tag:blogger.com,1999:blog-89378333857075489802024-03-05T12:29:16.429-06:00One Autism Mom's NotesReflections on Raising a Child with AutismPam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.comBlogger566125tag:blogger.com,1999:blog-8937833385707548980.post-81449311009217922702020-03-22T10:20:00.000-05:002020-03-22T10:20:09.178-05:00Shelter in Place<div class="separator" style="clear: both; text-align: center;">
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As COVID-19 has recently become a global pandemic, people
around the world have faced fear and uncertainty as well as a loss of freedom
because sheltering in place has become necessary to stop the spread of the
virus. Although the concept of staying home is daunting for many, I have had to
shelter in place before and can assure those who are experiencing this for the
first time that one can be content while homebound. As the Apostle
Paul states in Philippians 4:11, “…for I have learned to be content whatever
the circumstances.”</div>
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<br /></div>
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When I was pregnant with Alex, I was diagnosed with a rare
autoimmune disorder, chronic immune thrombocytopenia purpura, or ITP, in which
my immune system mistakenly destroyed healthy blood platelets responsible for
clotting, putting me at risk for hemorrhaging. Normal platelet count is between
150,000-450,000; my typical platelet count at the time was about 100,000.
Shortly before Alex was born, I caught a bad cold, causing my immune system to
overreact, and my platelets dropped dangerously low to 2,000. My obstetrician,
who never minced words, warned me, “You could hemorrhage into the placenta and
kill both you and the baby!” After being hospitalized for a few days and
treatment with intravenous gamma globulin, my platelets returned to a safer
range. However, I was to be essentially confined to home for the next few
months, taking care of a newborn baby and not risking getting sick and having
my platelets drop. Fortunately, by avoiding other people’s germs, I never had
another ITP crisis, and thankful to be alive, I was fine with being safely
ensconced at home.</div>
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Later I would realize that situation properly prepared me to
be the mother of a child with autism. At various times, we have had to shelter
in place with Alex because his unpredictable behaviors made going out in public
too difficult for us, or his sensory issues and anxiety made leaving the house
too difficult for him. Rather than complaining about the restrictions autism
has imposed on our family life, we have accepted what is. Thankfully, the three
of us enjoy being at home, reading books, listening to music, watching
television, surfing the internet, and spending time together in our peaceful
existence. Sheltering in place has frequently become a way of life for us.</div>
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Yesterday, an autism dad shared an interesting online
article written by mental health counselor Rose Reif and titled, “4 reasons why
special needs parents are better equipped than everyone else to handle
Coronavirus stress.” [To read this article, please click <a href="https://reifpsychservices.com/4-reasons-why-special-needs-parents-are-better-equipped-than-everyone-else-to-handle-coronavirus-stress/?fbclid=IwAR1wTK_UoSrTe5pnEDPEu1gj_HfA4AtW5i-ATI9z5l3nwzkDScY_wGFQV6s">here</a>.] Although one
would think that parents with special needs children would find the extra
stress caused by the pandemic daunting, she explains how life has prepared
these parents to cope even in extreme circumstances. Specifically, she notes
four qualities that make special needs parents stronger––traits that others can
learn and use to get through this current crisis.</div>
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First, she states that special needs parents are adept at
“tolerating ambiguity,” that is, accepting uncertainty, such as not knowing how
long this pandemic will last or what will happen. As she notes, “…for special
needs parents, this is not the first time that life hasn’t looked how they
expected it to look.” Moreover, she explains that special needs parents have
learned to accept and adapt to change quickly out of necessity, knowing that
there are “no guarantees” in life. When I am tempted to fear the future, I
remember the wisdom of my son, who often prophetically says, “Wait and see.”</div>
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<br /></div>
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Another trait that makes special needs parents resilient
according to this article is that they are “focusing on what they can control
(and only on what they can control).” While we can’t control what others say or
do, we can control what we say and do as well as determining our attitudes.
Life with a special needs child can feel out of control, but we take control by
our response, especially in a crisis setting. Alex’s behavioral therapist has
taught him a variety of mantras to recite when he feels anxious so that he can
feel a sense of control. His favorite is “Everything will be all right.” I do
the same thing with Bible verses, most often Philippians 4:13, “I can do all
things through Christ who strengthens me.” More importantly, we know that God
is in control, which gives us even greater comfort than thinking we are in
control.</div>
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<br /></div>
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A third quality noted in the article that special needs
parents possess is “knowing when to accept ‘good enough.’” Through experience,
special needs parents have learned that they cannot do everything they
should/need/want to do, so they have learned to accept their limits and
prioritize where to focus their energies. As Ms. Reif states, “These special
needs parents recognize that good enough may actually be perfect right now.” As
a perfectionist, this was a hard lesson for me to learn, but placing
unreasonable expectations upon myself brings anxiety and discontent. Good
enough is good enough, at least that's what I keep telling myself.</div>
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<br /></div>
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Finally, the article explains that special needs parents
have an “understanding that social distancing is not the same as emotional
distancing.” Specifically, parents of special needs children “know intimately
the pain of feeling isolated” because they have often had to miss family
gatherings or social events, due to their child’s unique needs. However, Ms.
Reif observes that this isolation has made them empathetic to the feelings of
those who are currently struggling with social distancing. She notes of special
needs parents: “They are reaching out, maintaining connection, and validating
how hard it really is to feel alone in your struggle and fear.” Thankfully,
modern technology allows us to connect via phone, email, and social media so
that we can feel less isolated from people we care about.</div>
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<br /></div>
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As we look ahead in these days of uncertainty, when life
feels out of control and we struggle to accept that we are doing enough, we
need to connect with others so that we don’t feel alone. Although special needs
parents have learned these lessons the hard way, perhaps others can benefit
from our experience. As the Apostle Paul reminds us to follow God’s example in
II Corinthians 1:4, “He comforts us in all our troubles so that we can comfort
others. When they are troubled, we will be able to give them the same comfort
God has given us.” Here’s a comforting thought: You’ve got this because God’s
got this. Or, as Alex would say, “Wait and see. Everything will be all right.”</div>
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<div class="MsoNormal">
“For in the day of trouble he will keep me safe in his
dwelling; he will hide me in the shelter of his sacred tent and set me high
upon a rock.” Psalm 27:5</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com2tag:blogger.com,1999:blog-8937833385707548980.post-77562127605038427082019-10-20T10:27:00.000-05:002019-10-20T10:27:04.023-05:00Seek and Find
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In last week’s blog entry, I wrote about the need for
sameness in autism and the problems that can arise when certain comfort items
are no longer available. Thanks to the thoughtfulness of an autism dad, The
Little Blue Cup Project emerged, allowing parents to connect with others and
track down rare items their children need. The online article I cited from <i>Vox</i>
[To read this article, please click <a href="https://www.vox.com/the-goods/2019/10/4/20891450/autism-comfort-items-replacement-strategies">here</a>.] also described problems that occur
when certain foods are taken off the market. Since many people with autism can
be picky eaters due to sensory issues and/or have food allergies and
sensitivities, being able to obtain specific favorite foods is a priority for
many parents whose children may reject substitutions.</div>
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Specifically, the article cites the example of a mother who
orders food items in bulk quantities for her adult son who will only eat a few
items, such as Laughing Cow cheese spread, two flavors of Capri Sun drinks, and
Nesquik chocolate drink mix. When her local grocery stores stopped carrying
Laughing Cow cheese, she wrote to the company, and they sent her a refrigerated
package containing four dozen boxes of her son’s favorite cheese. In addition,
she states, “I stockpile everything as if I can’t source them in the shops, and
he will not have alternatives.” Although shopping for groceries should not have
to require research and detective work, for many parents of children with
autism, it does.</div>
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Because of sensitivities to cow’s milk, Alex has been on a
dairy-free diet for more than twenty years. Recently, I had noticed that the
specific type of coconut milk beverage I use to make pudding and smoothies for
Alex has become more and more difficult to find in grocery stores. Fortunately,
the company’s website lists places where their products may be purchased;
however, the specific flavor Alex prefers was no longer available in the shelf
stable package we had bought for several years. </div>
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With some more online searching, I discovered that our local
Target store carries the same brand and flavor of coconut milk beverage in milk
cartons in the refrigerated case. What is especially helpful is that Target’s
website not only tells in what aisle their products may be found but also how
many of that particular item are currently in stock. </div>
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Thankfully, Target carries the elusive coconut milk beverage
as well as the same brand’s coconut milk vanilla yogurt alternative that Alex
eats every day. While other local stores had either stopped carrying this
product or were often sold out, probably due to greater demand and limited
supply, Target has come through for us once again by providing Alex’s favorite
dairy-free yogurt. Even better is that they offer this yogurt at a lower price
than what we had been paying at grocery stores.</div>
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After solving the issues with coconut milk beverage and
yogurt, I thought I could rest a bit from tracking down foods for Alex.
However, a couple of weeks ago, our local grocery store that offers a wealth of
special diet foods suddenly stopped carrying Rice Dream nondairy frozen
dessert, the ice cream equivalent Alex has eaten for more than twenty years. After
checking their website and discovering that no local stores carry this specific
product, I wrote an email to the local grocery store’s manager requesting that
they order this product. Within a day, the manager sent me a very cordial
response explaining that their supplier no longer carries the Rice Dream frozen
dessert. He even went to the trouble of checking to see if he could get the
item from other suppliers but had no luck. Moreover, he assured me that if
their supplier began carrying this product again, he would be happy to order it
for me. While I certainly appreciated his kind efforts, I knew that I would
have to find an alternative to yet another unavailable food item that Alex eats
every day.</div>
<div class="MsoNormal">
Once again, I was grateful for the ease of Internet
searching, which led me to two alternatives for Rice Dream’s frozen dessert. So
Delicious, whose coconut milk beverage and yogurt have been elusive but finally
found at Target, make a coconut milk “ice cream” and so does a company called
Nada Moo. After scanning their websites, I found that So Delicious non-dairy
frozen dessert is available at two of our local stores as well as Target, while
the Nada Moo is only found at Target. Again, the ever-helpful Target website
allowed me to find the aisle number for these dairy-free treats as well as the
number they currently had in stock before I ever arrived at the store.</div>
<div class="MsoNormal">
Of course, my search for dairy-free ice cream would have
been in vain if Alex rejected the coconut milk substitutes. Thankfully, he seems
to like the flavor and texture of the coconut milk ice cream as much if not
more than the rice milk ice cream he’s eaten all these years. Now I can buy his
coconut milk beverage, yogurt, and ice cream all at the same place as well as have the
opportunity to make a Target run, which I always enjoy!</div>
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Thinking that my current quest to find things for Alex was over, I
was disappointed to discover last week that the shampoo he has used for many
years has also been discontinued. Once again, I turned to my laptop for a
search of stores that might have his shampoo and was able to get some good
leads. Knowing that he is sensitive to textures and smells, I knew I had to buy
up as many bottles of his shampoo as I could find to store for future use.
Feeling like a hoarder, I stopped at three different stores and bought a total
of nine bottles of his shampoo, which should last us for a while. Hopefully,
before we run out, I’ll be able to locate an acceptable substitute or he’ll be
less picky about his toiletries of choice.</div>
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Among the various challenges autism presents is the need for
sameness, which tests parents who are trying to find specific foods and items our
children need and prefer. Fortunately, the Internet makes our searches for
these favorite things easier as we try to help our children cope in a world
that changes faster than they would like. Consequently, we pray for their
healing so that they can learn to be more flexible and willing to accept
alternatives when the originals are no longer options. In the meantime, we
autism parents hope that every time we seek, we shall find what our children
need.</div>
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“So let’s not get tired of doing what is good. At just the
right time we will reap a harvest of blessing if we don’t give up.” Galatians
6:9</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-36663212915749850512019-10-13T09:53:00.000-05:002019-10-13T09:53:55.681-05:00Comfort Objects
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In their early years, many children develop a fond attachment
to certain objects that bring them comfort. For me, a small pink blanket I
draped over my toddler shoulders served as my security blanket, much like the
<i>Peanuts</i>’ cartoon character Linus. My mother tells of how I stood by the washer
and dryer waiting for that beloved pink blanket’s return during necessary
laundry sessions. Most appealing about this blanket was the satin binding
around the edges that I fingered as I sucked my thumb. In fact, I so associated
the two calming sensory activities that when I decided to stop my thumb-sucking
habit, I told my mom to throw my blanket away. Wisely, she simply hid my pink
blanket in case I changed my mind, but my resolve proved strong, and I never
resumed my old habit nor needed the blanket I had dragged around until I was
five.</div>
<div class="MsoNormal">
When Alex was little, he had a beloved blanket, as well,
although his was too large to carry around. As a toddler, he slept under a
quilt my grandfather had given me. Years earlier, Paw Paw had bought handmade
quilts for each of his six grandchildren. Mine has squares depicting little boys
carrying fishing poles. The most eye-catching elements are the various brightly
colored fabric hats and boots the boys are wearing that are appliquéd on the quilt. Alex
was drawn to this design, and he called the quilt “the boys with socks.” Every
night as he happily snuggled under his cozy quilt, he seemed content that “the
boys with socks” would keep him company all night long.</div>
<div class="MsoNormal">
Aside from the security blanket, Alex has had other objects
that he finds comforting. However, most of them have been electronic items,
such as graphing calculators, spelling correctors, and handheld games. If he
misplaced these precious possessions, he became upset and even frantic until we
found them. Because these things were so important to him, we learned to keep
batteries on hand at all times to ensure they never lost power. In addition, we
even bought duplicates of some of these items so that he wouldn’t melt down
when they temporarily disappeared or permanently broke. Apparently, his
attachment to certain objects is rather common in the autism community.</div>
<div class="MsoNormal">
In a recent article, “Some autistic people find comfort in
specific objects. What happens when they’re not available anymore?” published
on October 4, 2019, in <i>Vox</i>, author Sarah Kurchak explains why people with
autism value comfort items. [To read this article, please click <a href="https://www.vox.com/the-goods/2019/10/4/20891450/autism-comfort-items-replacement-strategies">here</a>.] She
notes that autistic people like herself dislike change and prefer stability,
often found in certain objects. For her, a specific type of iPod offers her
comfort because the songs programmed on her playlist drown out noise, and she
finds the texture of the click wheel soothing. Since this device is no longer
manufactured, she explains that she has been searching eBay online for a
specific model identical to the one she owns that needs to be replaced. As she
states, “We tend to use the same items over and over again until they fall
apart, or we lose them.”</div>
<div class="MsoNormal">
When children with autism lose precious comfort objects or
these items break or wear out over time, parents often turn to the Internet to
find exact duplicates. However, some of these products may no longer be
available, which makes this desperate search more complicated. A few years ago,
a father from England began searching for a specific drinking cup, the only one
his son with autism would use.<span style="mso-spacerun: yes;"> </span>In
the article “Little Blue Cup: Dad Who Searched For Tommee Tippee Cup For Son
With Autism Starts Global Kindness Project,” published November 22, 2017, in
<i>Huffington Post</i>, Amy Packham explains how Marc Carter started an online network
to find specific items for people with special needs. [To read this article,
please click <a href="https://www.huffingtonpost.co.uk/entry/tommee-tippee-autism-hunt-global-project_uk_5a154f77e4b025f8e93289e5?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAADBnwIZMKznHoaAIw2argPkrg6FPvaLmgp-d7q9LK1MNMwpnCC_neb0IuWz90u3nlgs-XDjZ_RZ1hJeNBuE6I1gGfnEBI1niQmSpGeCEsZVM5OZFyB2KbI7mh7Hzntx8ZrUGjgGttlXHfYRx0vUmxqxJs3Zmtnu77r0gb2AfF7hq">here</a>.]</div>
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After he searched for the discontinued cups his son, Ben,
needed, the company that had previously made them sent him five hundred exact
duplicates. Recognizing that other parents of children with autism may have
similar needs, Ben’s father established Little Blue Cup, a Facebook page for
parents seeking specific hard-to-find objects. Explaining the purpose of this online
networking project, he states, “If you care for someone with disabilities or
special needs and they need a cup, bottle, or anything else, something small
that keeps them happy, healthy, and from having the most challenging times,
please let me know and we will search the Internet together.”</div>
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Looking over the Little Blue Cup Facebook pages (including a
page specifically for the United States and Canada), one sees requests for a
variety of objects held dear by people with special needs: blankets, clothing, stuffed
animals, and other toys. Most of these items are rare or no longer
manufactured, making the search to replace them more difficult. While the
requests and stories behind them are touching, the responses to the families’
needs are also heartwarming as people try to fulfill these requests with
similar or exact duplicates. Clearly, Marc Carter’s experience with his own
son’s needs allowed him not only to display his empathy by setting up the
Little Blue Cup Project but also to provide a way for people to interact
compassionately by requesting and fulfilling special needs.</div>
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Although comfort items are typically associated with
children, the need for these special objects often continues into adulthood for
people with autism. As one adult with autism remarks in the <i>Vox</i> article, “As
you get into adulthood, you’re kind of told that you’re not supposed to have
comfort items…It’s not an exclusively autistic thing, but it gets drilled into
us that we have to outgrow certain childish tendencies, like having comfort
stuffed animals or comfort items that you take with you all the time. If autism
is seen as a developmental disorder, then autistic people are seen as people
who have to outgrow childhood.” Fortunately, with the establishment of the
Little Blue Cup Project and the support from people willing to share comfort
items, perhaps those with autism can retain not only objects precious to them
but also an innocent childlike existence where they can feel comfort in knowing
people love and care about them and will strive to meet even the seemingly
smallest of their needs.</div>
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“When doubts filled my mind, your comfort gave me renewed
hope and cheer.” Psalm 94:19</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-39671315382043000442019-10-06T09:17:00.000-05:002019-10-06T09:17:11.436-05:00The Autism CARES Act
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJC1v5MhRLRPcK3tNSagJFSLJTFUT8waHRGnVlViWUV9duuHpjuozv-hhkQFH7bLRVhc4OXiEaGQOdl9XTT_RjRfpWFHaYKgCM8FhGle0lmnMCv4FQAP8I926pQQ79j_NLlME1pSl79yA/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="162" data-original-width="310" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJC1v5MhRLRPcK3tNSagJFSLJTFUT8waHRGnVlViWUV9duuHpjuozv-hhkQFH7bLRVhc4OXiEaGQOdl9XTT_RjRfpWFHaYKgCM8FhGle0lmnMCv4FQAP8I926pQQ79j_NLlME1pSl79yA/s1600/images.jpg" /></a></div>
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Last Monday, on September 30, 2019, President Donald Trump
signed the Autism CARES Act into law. As Natasha Anderson from Cleveland’s Fox
8 News reports in an online article titled, “President Trump signs ‘Autism
CARES Act’ providing $1.8B in funding for programs,” this law offers 1.8
billion dollars over five years for autism programs. [To read this article,
please click <a href="https://fox8.com/2019/10/02/president-trump-signs-autism-cares-act-providing-1-8b-in-funding-for-programs/">here</a>.] Specifically, three government agencies––the Centers for
Disease Control and Prevention, the National Institutes of Health, and the Health
Resources and Services Administration––will use these funds toward autism
research, education, early detection, and treatment.</div>
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According to an online article written by Michelle Diament
titled, “Congress Considers Renewal of Autism Act,” and published online
February 11, 2019, on <i>Disability Scoop</i>, the Autism CARES Act enables continued
federal funding for autism. [To read this article, please click <a href="https://www.disabilityscoop.com/2019/02/11/congress-renewal-autism-act/26019/">here</a>.] Autism
CARES is the acronym for Autism Collaboration, Accountability, Research, Education,
and Support. </div>
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However, this is not the first federal government act passed
to help people with autism and their families. According to the “Autism CARES
Act Issue Brief” published on the Autism Society website, President George W.
Bush signed the Combating Autism Act into law in 2006.<span style="mso-spacerun: yes;"> </span>[To read this summary, please click
<a href="https://www.autism-society.org/wp-content/uploads/2019/02/CARES-Brief-2018.pdf">here</a>.] This law was designed to coordinate federal agencies in response to
significant increases in the numbers of children diagnosed with autism. Since
that law was signed in 2006, the rate of autism has substantially increased
even more––approximately six hundred percent.</div>
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The recently signed Autism CARES Act replaces the original
Autism CARES Act that was due to expire on September 30, 2019. The 2014 Autism
CARES Act was a bipartisan bill both the Senate and the House of
Representatives passed unanimously. Under the previous ACA, $260 million of
government funds were allocated annually for autism research and services. Not
only does the new version of the ACA provide significantly more funding, but
the current law also addresses the needs of adults with autism, using the
phrase, “across the lifespan.”</div>
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Another bipartisan effort, the Autism CARES Bill of 2019 was
sponsored by Representatives Chris Smith, a Republican from New Jersey, and
Mike Doyle, a Democrat from Pennsylvania. Similarly, in the Senate, the bill
was introduced by Senator Bob Menendez, a Democrat from New Jersey, and Senator
Mike Enzi, a Republican from Wyoming.</div>
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In a statement, Representative Smith noted, “The problem of
‘aging out’ of services is a real hurdle every parent or caretaker of a child
with autism inevitably faces. But autism is a lifetime neurological disorder,
and adults with autism continue to need their services.” Additionally, he
stated that the Autism CARES Act will help provide support to “an estimated
50,000 persons with autism each year who ‘age out’ of critical assistance
programs,” a crucial need since, “many individuals and communities are
unprepared for this transition.”</div>
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The Autism CARES Act addresses three primary areas:
research, data, and training. Federal funds support research into biological,
genetic, and environmental aspects of autism as well as seeking potential
biomarkers for autism. In addition, researchers seek the best methods for
treatment and intervention in autism. Under the direction of federal agencies
supported by the Autism CARES Act, data is collected to estimate the number of
children with autism in various regions of the United States and to help
identify risk factors for autism. Along with research and data collection, the
Autism CARES Act supports training professionals to screen, diagnose, and treat
people with autism, including addressing physical and behavioral issues.
Moreover, the Autism CARES Act funds agencies that provide parents with support and information regarding access to
services for their children with autism.</div>
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President Trump demonstrated his heartfelt concern for autism families
as well as his enthusiastic support for the Autism CARES Bill, posting the following comments on
Twitter: “Today I was proud to sign the Autism CARES Bill! We support research
for Americans with Autism and their families. You are not forgotten, we are
fighting for you!”</div>
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Certainly, the Autism CARES Act serves as an impressive
example of how politicians can work together amicably for a noble cause.
Hopefully, greater emphasis upon the needs of adults with autism as well as the
increased funding will reap great rewards for the autism community. Perhaps
valuable research can find a cause and a cure for autism, thereby eliminating a need
for future Autism CARES Acts and answering the prayers of many families whose
lives have been touched by autism.</div>
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“Rulers lead with my help, and nobles make righteous
judgments.” Proverbs 8:16</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-83590655879356048282019-09-29T10:46:00.001-05:002019-09-29T10:46:54.659-05:00"To Protect and Serve"
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0YcYmaz_ic5oREGE0RsyKJuwWbgTVXKafuFCGL49MPOj8CWN3cAwN8tN5pY4H1Av11I5gijNOLhFILK13rCLnAKshuF3Y79gQLzNzh8yUHWnju1MqNiLMXZ6YtuYN76h9_PzYEeFJ2Aw/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="218" data-original-width="231" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0YcYmaz_ic5oREGE0RsyKJuwWbgTVXKafuFCGL49MPOj8CWN3cAwN8tN5pY4H1Av11I5gijNOLhFILK13rCLnAKshuF3Y79gQLzNzh8yUHWnju1MqNiLMXZ6YtuYN76h9_PzYEeFJ2Aw/s200/images.jpg" width="200" /></a></div>
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Last month, two Northwest Indiana police departments
announced initiatives to aid people with autism and their families. While these
programs seem rather simple, the potential benefits could be significant in
emergency situations. Moreover, these agencies demonstrated their caring and
commitment to some of the most vulnerable citizens in their communities, which
is certainly impressive and commendable.</div>
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On August 28, 2019, the Starke County Sheriff’s Office
Facebook page posted an offer of free bumper stickers to families affected by
autism or Alzheimer’s disease or dementia. Sheriff Bill Dulan noted that these
stickers could be posted on homes or vehicles to give first responders a “Heads
Up” in an emergency situation “that your child or loved one may need extra
assistance.” These bumper stickers bear the symbol of the Starke County
Sheriff’s Department and contain the following messages: “Emergency Responder:
An occupant may have autism or special needs. May not respond to verbal
commands” and “Emergency Responder: An occupant may have Alzheimer’s or
dementia. May not respond to verbal commands.”</div>
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By providing these bumper stickers at no cost to families
with special needs, the Starke County Sheriff’s Office shows their concern for those who may not be able to communicate in an emergency situation.
Additionally, this simple method of identification may assist first responders
in providing appropriate care and support to special needs people. Furthermore,
these stickers offer peace of mind to families dealing with autism, Alzheimer’s
disease, and dementia, knowing that their loved ones can receive the special
care they need in a crisis.</div>
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While the Starke County, Indiana Sheriff’s Office provides
free bumper stickers to help identify people with autism, the East Chicago,
Indiana police now offer free identification bracelets for people with autism. On
August 1, 2019, <i>The Times of Northwest Indiana</i> newspaper published an article
written by Paul Czapkowicz titled, “Forces partner to aid autism patients,”
explaining a plan by the East Chicago Police Department to help identify people
with autism. [To read this article, please click <a href="https://www.nwitimes.com/news/local/lake/forces-partner-to-aid-autism-patients/article_1beded82-b05e-5bff-82ab-458ac0b2a9de.html">here</a>.] Working with the North
Township Trustee’s Office, the police created the Emergency Identity Program.
The township trustee’s office provides forms for parents of children with autism
who wish to participate in the program. In addition, the agencies are currently
working with the local school system to offer the program to students who have
autism.</div>
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Parents who enroll their children with autism in the
Emergency Identity Program will be given a lime green bracelet for their
children to wear on their wrists, ankles, or shoes. These bracelets easily identify
the wearers as having autism so that police officers can help them cope better
in emergency settings. Additionally, North Township Trustee Frank Mrvan showed
compassion for people with autism, hoping that the bracelets would have a
positive impact instead of “having a stigma to them.” Participation in
this program is voluntary, and families who opt to enroll will receive the
identification bracelets at no cost to them.</div>
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As well as serving as an easily visible cue to first
responders that the bracelet wearer has autism, the bracelets are numbered so
that police can look up the person’s name, address, and phone number if needed.
In addition, the agencies are collaborating with the local 911 dispatch center
so that police could be notified in advance if they were going to the home of
someone with autism. Yet another benefit of this program could be helping to
find lost children who have autism since many children with autism wander from
home, school, or other safe places. These bracelets could help police find
these children and return them safely home.</div>
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Spearheading this initiative is East Chicago police officer Sgt.
Justin Orange, Sr., who is the father of a child with autism. He states, “The
reason why this was kind of near and dear to us was because I have a son with
autism and there’s also another officer on our department who also has a son
that has autism.”</div>
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In addition to developing the program to identify people
with autism by using these bracelets, the East Chicago Police Department has
worked with the Autism Society of Indiana to train officers in how to interact with
people with autism and how to calm people with autism who may be agitated in an
emergency situation. As North Township Trustee Frank Mrvan wisely notes,
“With autism, very often there are triggers such as flashing lights and noises
that escalate people, and their escalation turns to fight-or-flight.” Along
with training police officers, the city has offered seminars for families of
children with autism to explain procedures if the police were called to their
homes.</div>
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Further demonstrating their commitment to helping people
with autism, the East Chicago Police are working with the Autism Society of
Indiana to provide the department’s squad cars with de-escalation kits. These
kits include items, such as stress balls, stuffed animals, and spinners,
to help calm people with autism who are overwhelmed by sensory stimuli or upset
in a crisis situation. </div>
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At the time this newspaper article was written, more than
one hundred children and adults with autism had already registered for the East
Chicago Emergency Identity Program. Even more encouraging is that nearby
communities are developing similar plans to help people with autism.
Specifically, in Lake County, Indiana, the town of Munster has initiated a
comparable program, and the city of Hammond has recently started their own
program. In addition, North Township Trustee Frank Mrvan anticipates that the
Lake County towns of Highland and Whiting will also develop similar programs to
assist people with autism in the near future.</div>
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With the increase in the prevalence of autism, communities
must develop plans to help people with autism and their families in emergency
circumstances. Being able to identify people who have autism with stickers or
bracelets could prove to be a simple yet effective way to assist with this issue.
Moreover, training first responders how to interact with and to calm people
with special needs could prove vitally important in emergencies. The Starke
County Sheriff’s Office and the East Chicago Police Department clearly
recognize the needs of people with autism, as evidenced by their recent
initiatives designed to help this special needs population. Certainly, they
embody the police motto, “To protect and serve,” through their dedicated
efforts to help people with autism. Hopefully, more community agencies will
follow their lead and develop programs to aid people with autism, especially in
emergency situations when they need help the most.</div>
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“…help those in trouble. Then your light will shine out from
the darkness, and the darkness around you will be as bright as noon.” Isaiah
58:10</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-61766977055601905912019-09-22T10:51:00.000-05:002019-09-22T10:51:24.543-05:00Breaks and Breakthroughs
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR0zk3EZA9Dz6zoTu03XUyZisXfrfYK4wH0Pf9ezxpfWSyU4hl54pzmD08Ch88t65jwHL_m7t4dcQYEHIr5X25lEPtpl8p29FCfhEgegeAkTJaviXr8Qvhud0O9g0ti1NybrWjPFUsfrc/s1600/images-1.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="211" data-original-width="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR0zk3EZA9Dz6zoTu03XUyZisXfrfYK4wH0Pf9ezxpfWSyU4hl54pzmD08Ch88t65jwHL_m7t4dcQYEHIr5X25lEPtpl8p29FCfhEgegeAkTJaviXr8Qvhud0O9g0ti1NybrWjPFUsfrc/s1600/images-1.png" /></a></div>
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Like many students with autism, Alex has a laminated card
that reads, “I need a break” his therapist gave him a few years ago. These
visual aids communicate an important need for those who have limited verbal skills
or for those who simply may be too upset to speak. In addition, knowing that break
time is available may also relieve stress. Considering how difficult
communication, social interaction, and motor tasks can be for people with
autism, certainly they need to know that taking a break is always an option.
Over time, as Alex has mastered skills and learned how to cope with stress
better, he has relied upon his break card less and less, needing fewer breaks
and more easily verbalizing his needs.</div>
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In June, after writing this blog for nine years, I decided
to take a break from writing at least for the summer. Frustrated with the lack
of useful studies being done to help people with autism, I couldn’t find
interesting research to share. In addition, I knew that my summer would be
devoted to weaning Alex off an anxiety medication that drug companies had stopped
manufacturing. Even though he has done well when we have taken him off other
medications, we know that he deals with sensory issues as his nervous system
adjusts to the changes. Specifically, everything sounds louder to him, and his
sense of touch is more sensitive. I imagine that his nerves respond similarly
to when numbing subsides after dental work or a foot “wakes up” after being
“asleep.” At first, this sensory overload can even be painful until the nerves
adjust.</div>
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Consequently, we have helped Alex adjust to the changes,
keeping him from places where noises could bother him, and understanding that
he may be irritable at times, dealing with the physical changes. While he has
been adjusting to the medication reduction, I have been continuing to research,
hoping to find ways to help him cope in a world that overwhelms him at times. After
watching a webinar last month, I found a simple solution that has helped Alex
tremendously.</div>
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In an online Facebook talk sponsored by TACA, The Autism
Community in Action, Dr. Jerry Kartzinel explained the link between autism,
anxiety, and adrenaline. He likened some with autism as being like rabbits, who
flee when sensing danger, and others as being like lions, ready to fight when
adrenaline rises. He recommended monitoring the pulses through fitness devices
to observe rushes of adrenaline that cause heart rates to spike. Since all of
his explanations made perfect sense to me, especially with my observations of
how Alex reacts to anxiety, I began researching fitness trackers.</div>
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After comparing various features, I wound up getting a
Fitbit Inspire HR (heart rate) for Alex at Target for less than one hundred
dollars. Since he always wears a wristwatch, he was unfazed about also wearing
a Fitbit on his wrist, especially since it offers data he finds interesting:
time, date, steps and distance walked each day, and heart rate. While this
Fitbit also records data related to sleep, we don’t have him wear it during the
night, for fear it may impede his healthy sleeping habits. At the end of the
day, we sync the Fitbit to an app on our iPads and can see graphs showing
Alex’s heart rate throughout the day.</div>
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In the past month, whenever Alex seems agitated, we ask him
to check his pulse on the Fitbit. He then calls out the number displayed, and
typically his pulse is over 100 if he’s upset. Because he’s so attuned to his
body and numbers, he understands the link between his emotions and his physical
response measured by his heart rate. We remind him to get his heart rate down,
and he will sit calmly, sometimes rocking, until his heart rate returns to a
normal level. As we check his heart rate graph at the end of the day, we are
rarely surprised because his numbers correspond to specific events at specific
times during the day. Not only can we track any times he was upset marked by
increases in his pulse, but we can also see increases in heart rate due to
activity, such as coming downstairs for meals or excitement when his therapists
come to see him. Moreover, we’ve discovered that he’s remarkably mellow, as
evidenced by low pulses, most of the time.</div>
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A bonus feature of the Fitbit Inspire HR is the Relax mode,
which has also proven quite helpful. The Relax feature flashes instructions on
the Fitbit screen, telling the user to focus on breathing and the stars that
move on the screen. Intermittently, the Fitbit will send gentle vibrations that
softly buzz. According to the website Enabling Devices, “Vibration Therapy
Tools are fundamental when working with sensory integration. Vibrating products
are beneficial to special needs children especially for those with autism,
ADHD, or sensory processing disorder. They can calm kids who need more sensory
feedback or help train hypersensitive kids to tolerate more sensations.” Although
one might think this buzzing would be annoying to someone with sensitive
hearing and touch, Alex finds this gentle stimulation calming. After the two-minute
Relax session is complete, Alex’s pulse will usually drop at least twenty beats.</div>
<div class="MsoNormal">
While eliminating an anxiety medication has caused Alex to
deal with sensory issues in the past few months, he has adapted remarkably well
for the most part. Because he is aware of his physical needs, he usually knows
when he needs to take a break. Recognizing the connection between his heart
rate and stress has enabled him to be even more in tune with his body and to gain
greater control when his adrenaline levels make him feel out of control. Once
again, I’m convinced that God guides our path, as research led us to a simple
device that has proven extremely helpful to our everyday lives. By keeping
track of his heart rate, Alex is learning to cope with stress and better
reflect the pure heart God has given him.</div>
<div class="MsoNormal">
“Then Jesus said, ‘Come to me, all of you who are weary and
carry heavy burdens, and I will give you rest.’” Matthew: 11:28</div>
<div class="MsoNormal">
<br /></div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com4tag:blogger.com,1999:blog-8937833385707548980.post-42832205238631885682019-06-09T10:59:00.001-05:002019-06-09T10:59:12.687-05:00Most Annoying Award<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiNRUJqYHhxPorcyla6t_pufmKJ4KTF6lUaZQCXtgF81fCebUO4fw_hNUdZe9StX9IZbHFHQ7zOIqmvEYZdmphKixRdEtS8ncj7oUfEhZhY5D91YyH3LcVDYaZtoBYWhJVwvhc6iycxtw/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="255" data-original-width="197" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiNRUJqYHhxPorcyla6t_pufmKJ4KTF6lUaZQCXtgF81fCebUO4fw_hNUdZe9StX9IZbHFHQ7zOIqmvEYZdmphKixRdEtS8ncj7oUfEhZhY5D91YyH3LcVDYaZtoBYWhJVwvhc6iycxtw/s200/imgres.jpg" width="154" /></a></div>
<div class="MsoNormal">
Last week, an article from my local newspaper, <i>The Times of
Northwest Indiana</i>, received national attention: “Teacher mocks autistic student
with ‘most annoying’ award, parent complains.” In this news report and two
follow-up articles, education reporter Carley Lanich describes how a fifth
grade student with nonverbal autism received a trophy inscribed with “Bailey
Preparatory Academy 2018-2019 Most Annoying Male,” and she details the school
district’s response to the teachers’ involvement in this unprofessional and
unkind act. [To read “Teacher says she’s a scapegoat after student with autism
given ‘Most Annoying’ trophy” and to access links to two previous articles on
this story, please click <a href="https://www.nwitimes.com/news/education/teacher-says-she-s-a-scapegoat-after-student-with-autism/article_e06d2842-5d94-5bc6-ae23-e74e552118f5.html">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
According to <i>The Times</i>, on May 23, 2019, fifth graders from
Bailey Preparatory Academy, a public school in Gary, Indiana, celebrated the
end of the school year with a luncheon at a restaurant for teachers, students,
and students’ families. This event included a “Students’ Choice Awards”
ceremony where students chosen by their peers were awarded trophies for various
categories. Prior to the awards ceremony, students had been given ballots
prepared by two fifth grade teachers with categories and explanations of each
award, such as, “Most Positive (always encouraging or motivating others).”
Students were to write in the name of a female and male student for each
category, and these ballots were returned to the two fifth grade teachers
overseeing this event.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When the so-called award for “Most Annoying Male” trophy was
given to a boy with autism, his father, Rick Castejon, was shocked but did not
want to cause a scene. He explained that his son didn’t understand the meaning
of the trophy and was not upset, but as a parent he questioned the school’s
judgment in giving an award for this category. Moreover, he noted that another
boy, who is not a special education student, received this same designation and
was teased by other students when he was called forward to receive his trophy.
The next day, the father contacted the school district with his understandable
concerns.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Reportedly, the teachers at the awards ceremony told the
parents that all of the fifth grade students had voted for the class awards,
and the teachers were just there to hand out the trophies. Apparently, they
were attempting to protect themselves against any fallout and placing the blame
upon the students. However, the father of the boy with autism directly
criticized his son’s special education teacher, who handed him the trophy,
stating: “You should have protected my son no matter what. Your job should’ve
been to say, ‘We’re not going to give this one out.’”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In addition to the traditional positive awards, such as
“Most Scholarly,” the teachers included the grammatically incorrect “Most
Funniest” and “Most Friendliest” categories on the ballot. Besides the negative
“Most Annoying,” the teachers also offered “Most Sleepiest” as a grammatically
incorrect and thoughtless choice for those “usually caught trying to take a
nap.” Again, these teachers used poor judgment when not considering their
students’ difficult home situations that may impair their sleep and make them
overly tired at school. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After the initial article about the boy with autism
receiving the “Most Annoying” title, this news story received national
attention and public outcry for the cruel treatment of this special needs
child. Readers insisted that the teachers involved at least be fired and even
prosecuted for their actions. The Gary Community School Corporation, already
suffering from a reputation as one of the worst school districts in the state
of Indiana, immediately attempted damage control. A school spokesperson issued
the following statement: “The team is working to ensure that an occurrence of
this nature will never happen again.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Initiating an internal investigation by an education
attorney, the school district placed the school principal on administrative
leave pending further investigation. Moreover, the special education teacher
and the two fifth grade teachers responsible for the ballot and awards have
been notified that their teachers’ contracts have been cancelled based upon
their “inappropriate behavior” and “poor professional judgment.” In a letter
from the principal, she notes the failure of these teachers to be “an
acceptable role model” and to treat their students with “dignity and respect” by
giving the “inappropriate awards.” The teachers have the right to appeal the
decision regarding their dismissal from the district.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although the principal and two fifth grade teachers have not
issued statements to the press, the special education teacher is loudly
complaining about her fate. Alexis Anderson-Harper, who has been employed with
the Gary schools for fifteen years, claims that she is being unfairly targeted.
She states, “I feel like my livelihood is being taken away from me.” In a
rather odd analogy, she continues, “You’re
playing Russian roulette with my life.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
According to Ms. Anderson-Harper, the fifth grade teachers
who organized the awards ceremony are to blame because they created the
students’ ballot for the awards. She simply explained the categories to her
students and even decided to omit the “Most Athletic” award since none of her
students participated in school sports. However, she failed to delete the “Most
Annoying” category. She claims that she didn’t realize her student would
receive that designation until after his name was read and she handed him the
trophy at the ceremony. In her attempt to save her job and her honor, she
apparently blames her colleagues and the students, never apologizing for her
part in the cruelty to her student, nor expressing regret for not doing
something to prevent upsetting his parents.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As a result of the national attention this news story has
generated, the family of the boy with autism has received letters of support
from around the country and offers of replacement trophies and scholarship
funds. However, the boy’s father states that they are only accepting the kind
notes they have received and are looking into having donations sent to an
autism organization. He explains that he did not want to cause trouble or get
teachers fired, but he just wanted someone to be held responsible.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In a society where too many trophies are handed out just for
participation to prevent hurt feelings and to promote self-esteem, this story
of “awarding” a trophy out of thoughtlessness and perhaps even spite raises
righteous indignation. Teachers who demonstrate such poor judgment and lack of
compassion should not be working with any children, let alone special needs
children, and they deserve to be fired. Whether the student with autism
understands the meaning behind the trophy or not, his parents do, and they
certainly must be hurt by the actions of these teachers. Moreover, the regular
education student who also received the “Most Annoying” designation does
understand what it means and had to endure not only the negative label but also
the taunting of his peers who voted for him to receive it. Hopefully, this
incident will make more people, especially those who work with impressionable
children and special needs students, think about how to treat people with
compassion and understanding.</div>
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<div class="MsoNormal">
“You will heap burning coals of shame on their heads, and
the Lord will reward you.” Proverbs 25:22</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-4532259828848530552019-06-02T10:10:00.000-05:002019-06-02T10:23:48.771-05:00Pleasant Plateau<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2AmZAvT7RcAccFuJJgQfTwlwdfZ7VE0XTAtMqCttI-JLLRySUtfmpEx5ZQCu03ejgf9lJsWN2h5B0lraroiKvlhe8PbbL-lKAkC2XJOoc7XQBjQbhYC5sEZRAl9OozbyEQje1FHSyDC8/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="163" data-original-width="310" height="105" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2AmZAvT7RcAccFuJJgQfTwlwdfZ7VE0XTAtMqCttI-JLLRySUtfmpEx5ZQCu03ejgf9lJsWN2h5B0lraroiKvlhe8PbbL-lKAkC2XJOoc7XQBjQbhYC5sEZRAl9OozbyEQje1FHSyDC8/s200/imgres.jpg" width="200" /></a></div>
<div class="MsoNormal">
For the past few weeks, every evening after Alex goes to
bed, Ed will remark in a questioning way, “He’s been good all day?” When I nod
and answer in the affirmative, Ed will say, “Knock wood, he’s doing really
well,” and we will both rap our knuckles on the nearest wooden table. Knowing
that I really shouldn’t buy into this superstitious ritual and should give
proper credit, I add, “Praise God!”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Because Alex’s progress has not been a linear path as we
have seen setbacks along the way, we fear speaking about the good could somehow
make him regress. When he is dealing with anxiety that causes his behavior to
decline, we pray mightily for change. However, when Alex is sweet and calm, as
he has been lately, we worry that doing anything differently might cause an
unwanted change.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For years, we have prayed for God to heal Alex. At times,
frustrated by regressions and waiting, I have been jealous of those who have
experienced complete healing from autism. Researching diligently, I have
thought if I kept reading and praying, I could find a cure for Alex. While some
children with autism have been healed by chelation therapy to remove heavy
metals, vitamin B12 shots, special diets and nutritional supplements, and other
methods, none of these gave us the miracle I desperately sought. Nonetheless,
the efforts have been worthwhile because these interventions did make him
better.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In addition, I have been frustrated that acne has left mild
scars on Alex’s face, even though he cooperated with methods to treat the
inflammation and never picked at his face. He also has a small bald spot left
behind by a minor scalp infection, folliculitis, that we treated immediately
under medical supervision. Thinking that Alex has suffered enough from the
obstacles autism has presented, I hate that he has small scars as reminders of
previous infections.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, perhaps these minor flaws are evidence of healing,
reminders that sickness is not a permanent state. Over time, the acne scars
have faded their angry redness, and the bald spot has shrunken from the size of
a silver dollar to that of a penny. I cut and comb his hair to cover the small
bald spot so that no one really sees it, and the acne scars along his hairline
are fading with nightly applications of Mederma scar cream and time. Most
importantly, these slight imperfections don’t bother Alex a bit. The only
mirror he uses is a toy mirror that softens and slightly distorts in its
reflection, much like that described in I Corinthians 13:12: “Now we see things
imperfectly, like puzzling reflections in a mirror…”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Nonetheless, we still battle infection and its lasting
effects. Two years ago, Alex had a bad case of yeast infection in his mouth and
throat that ruined his healthy and hearty appetite. While we have been praying
that he would regain his love of nearly all foods, he still chooses to eat a
rather limited diet. Even after the yeast infection has been controlled by
weekly doses of anti-fungal medication and after working with a fantastic
speech therapist to overcome sensory issues related to eating, Alex is still a
picky eater, which is not uncommon in autism. However, sometimes he will
surprise us and ask for a food not usually part of his chosen menu and devour
it happily. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since we have seen him overcome other issues with time, we
wait expectantly for the day when he returns to his varied appetite.
Furthermore, we are thankful that he has regained the weight he lost from his
self-selective diet because he has cooperated with drinking nutritional
non-dairy protein smoothies I make for him every evening to increase his daily
calorie intake. Every week as I weigh him on our old-fashioned doctor’s scale,
I say a prayer that I can push the bar a little farther to the right, and God
has been faithful, as Alex has continued gaining weight at a healthy pace.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Along with gaining weight, Alex has also shown reduced
anxiety lately. He’s not just content but happy, skipping through the house and
grinning from ear to ear. He has once again enjoyed going places, and he’s
chatty and interactive, making appropriate comments that intrigue and amuse us.
For example, he nicely asked me the other day to adjust his wristwatch because
“It’s too close to the armpit.” Mind you, it was just a little above his wrist,
but the exaggerated description made me laugh. The professionals who work with
him have also noted how well Alex is doing and have commented on how pleasant
and observant he is, asking good questions. Last week, his companion came to
stay with him while Ed and I enjoyed lunch at a restaurant. When we returned,
she told us that he had been “perfect.” She also shared that when she asked him
who was winning the baseball game he was watching on television, he told
her––knowing that she’s not a fan of the sport––“The team that has the most
points is winning.” She found his literal explanation amusing; he was trying to
explain something he thought she didn’t know.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we reach these pleasant plateaus where things are going
smoothly and every night and day I thank God that Alex is doing so well and Ed
and I knock on wood in hopes of keeping the trend going, we closely analyze
circumstances to make sure nothing happens to change the peaceful existence we
gratefully savor. However, sometimes things occur that we cannot control. A few
weeks ago, we learned that one of the medications that helps keep Alex calm is
no longer available. Despite the best efforts of a dedicated pharmacist, we
cannot get that medication, so the nurse practitioner who prescribes Alex’s
medications has given us a plan to wean him off that drug. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While my first instinct was to panic that this change would
upset Alex and cause a setback, I had to remind myself that God sometimes
shoves me forward with both hands because He has plans to move Alex into
something new and better. Although I would have preferred to enjoy the pleasant
plateau a bit longer, not being able to get this medication means that we must
make a change. Remembering that Alex has always responded to medication
reductions favorably, I prayed that this change would be equally smooth for
him. As we have decreased his doses over the past few weeks, he doesn’t show
any negative side effects. If anything, he actually seems even better with this
medication reduction, and we pray that once we take him off completely, he will
continue to do well and perhaps even get better. I have to believe that God was
showing us that Alex no longer needed this medication because the weaning
process has gone so well, and Alex continues to be calm and good natured.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Perhaps healing looks different than I had imagined.
Certainly God’s ways and plans are better than mine. Maybe God reminds me that
all my searching for a cure is not nearly as important as trusting Him to make
Alex better. Definitely, I have witnessed His hand in our lives, guiding us and
healing Alex in unexpected ways that make us know He was responsible. For us,
healing and progress have rarely been the sudden and dramatic changes I prayed
for and expected, but instead the culmination of small signs that reveal God
has been there all along. Knock wood and praise God!</div>
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<div class="MsoNormal">
“For I am about to do something new. See, I have already
begun! Do you not see it? I will make a pathway through the wilderness. I will
create rivers in the dry wasteland.” Isaiah 43:19</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-55849806859211981902019-05-19T10:44:00.000-05:002019-05-19T10:44:34.558-05:00Connections Between the Brain and Heart in Autism<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixUes00O5gWW3bAV3CwMHgssYBh352zCZtwxitb1zEUAd0fLBEkWkj1ASqYVXBiWDyD1uqadwoV8OEvQlPD1ahaxD49leqKEnuqy7z06EXX_2mCb8n5qrBCOnEcsA7sufJmwxS74Oh-Ro/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="183" data-original-width="275" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixUes00O5gWW3bAV3CwMHgssYBh352zCZtwxitb1zEUAd0fLBEkWkj1ASqYVXBiWDyD1uqadwoV8OEvQlPD1ahaxD49leqKEnuqy7z06EXX_2mCb8n5qrBCOnEcsA7sufJmwxS74Oh-Ro/s200/imgres.jpg" width="200" /></a></div>
<div class="MsoNormal">
Recently, two interesting research summary articles
published online at <i>Spectrum</i> indicate that children and adults with autism
display characteristic differences in heart rates, suggesting the autonomic nervous systems of
their brains also function differently. In “Nerves that control heart rate may
contribute to autism,” published February 19, 2019, Nicholette Zeliadt
describes contrasts between heart rate changes in typical children and those with
autism. [To read this article, please click <a href="https://www.spectrumnews.org/news/nerves-control-heart-rate-may-contribute-autism/">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Referencing “Developmental trajectories of autonomic
functioning in autism from birth to early childhood,” published March 2019, in
<i>Biological Psychology</i>, this <i>Spectrum</i> article explains research done at Brown
University in the United States. [To read this research article, please click
<a href="https://www.ncbi.nlm.nih.gov/pubmed/30641105">here</a>.] Under the direction of Stephen Sheinkopf, associate professor of
psychiatry and human behavior, researchers studied 118 children from ages one
month to six years by measuring their heart and breathing rates. Of this group,
12 had autism, and the other 106 did not have autism. They were assessed every
6-12 months.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Normally, a person’s heart rate increases when inhaling and
decreases when exhaling, a condition known as respiratory sinus arrhythmia
(RSA). The autonomic nervous system controls these slight changes. These changes
in breathing and heart rate are also linked to regulating emotions and paying
attention to social cues, which are often impaired in autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The researchers found that all of the children showed
similarly decreasing heart rate, which occurs over time with normal
development. However, the children with autism were slower than their typical peers to develop the
normal fluctuation of heart rate that occurs with breathing. Moreover, this phenomenon was most obvious after 18 months of age when
behavioral symptoms of autism often emerge. By the age of 6, children with
autism catch up with their typical peers in this trait (RSA) and demonstrate
similar fluctuation of heart rate with breathing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After observing the differences in heart rates and breathing
between typical children and those with autism, researchers concluded, “RSA is
a marker of functional status in autism rather than a cause of social deficits.”
They suggest that the impairment of the autonomic nervous system occurs when
autistic behaviors appear. Moreover, they note that children with autism have
issues with physiological regulation––such as breathing and heart rate––that
develop over time. Because this research only involved children who were
exposed to drugs before birth, the researchers plan to study other groups of
children to see if heart rate and breathing differences occur more widely.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In another recent <i>Spectrum</i> article, published May 17, 2019,
and titled “Nerves that control heart rate may be offbeat in autistic adults,”
Jessica Wright describes similar research involving adults. [To read this
article, please click <a href="https://www.spectrumnews.org/news/nerves-control-heart-rate-may-offbeat-autistic-adults/?fbclid=IwAR2pOJGvogySZlpxDYPYGRoocnWRLbC_UKKnZav5gGUgCdinZFMq9ol3AQk">here</a>.] She summarizes an article, “Reduced heart rate
variability in adults with autism spectrum disorder,” published in <i>Autism
Research</i> on April 10, 2019. [To read this research, please click <a href="https://www.ncbi.nlm.nih.gov/pubmed/30972967">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Under the direction of Adam Guastella, professor of child
and youth mental health at the University of Sydney in Australia, researchers
examined resting heartbeats of 110 adults aged 16-41. Half of the participants
had autism, and the other half included typical adults. All of the people in
the study had no known heart conditions, and none of them were taking heart
medications.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Usually, people’s resting heartbeat varies, showing
flexibility and readiness to respond to environmental changes. However,
researchers discovered that in adults with autism, the resting heart rate
rarely varied. Moreover, those with autism had a higher baseline heart rate
than the typical people. The lack of change in heart rate suggests issues with
the autonomic nervous system responsible for reacting to social stimuli as well
as heart rate and breathing. Researchers note that these results may explain
issues with social skills common in autism as well as heart problems that can
lead to early death in people with autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Of the participants in the study who had autism, half of
them were taking medications, specifically antidepressants and antipsychotics.
However, there was no difference in the heart rates between the adults with
autism taking medications and those with autism who were not taking
medications. Nonetheless, researchers indicate the need for further study to
examine the impact of medications upon those with autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While both of these research studies indicate connections
between heart rates, the autonomic nervous system, and autism that begin in
infancy and continue through adulthood, more research clearly needs to be done.
For example, what triggers at age 18 months may be responsible for the
emergence of autistic behaviors? What is the connection between impairment of
the autonomic nervous system and the apparent need for antidepressant and
antipsychotic medications commonly prescribed for autism? What can be done to
regulate heart rates so that adults with autism do not die young from heart
conditions? Certainly, gaining knowledge regarding autism proves helpful, but
more research must be done before we can hope to find a cure for autism.</div>
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<div class="MsoNormal">
“Jesus replied, ‘Love the Lord your God with all your heart
and with all your soul and with all your mind.’” Matthew 22:37</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com2tag:blogger.com,1999:blog-8937833385707548980.post-7481888388257606212019-05-12T09:32:00.000-05:002019-05-12T09:32:45.186-05:00Bears and Blanket<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY_nfbT64ntnn1pxjS3iqfhvlSAatw-vKaFT9Bhsuj9E5wamrU1r4107LGEyetBqpLlNZOoQlZxoLpIoUEcbfKOxQ69df_NVMPe64yuC5WXMNdoHS2MmfpTfxj84pr1WTRfiWollj8zkM/s1600/IMG_0410.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1296" data-original-width="968" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY_nfbT64ntnn1pxjS3iqfhvlSAatw-vKaFT9Bhsuj9E5wamrU1r4107LGEyetBqpLlNZOoQlZxoLpIoUEcbfKOxQ69df_NVMPe64yuC5WXMNdoHS2MmfpTfxj84pr1WTRfiWollj8zkM/s200/IMG_0410.JPG" width="149" /></a></div>
<div class="MsoNormal">
Before Alex was born in December 1991, I made two teddy
bears for him. After seeing how tiny he was as a newborn, I was worried that
those bears intended to comfort him might scare him instead with their big eyes
and slightly creepy smiles. Nonetheless, he seemed to like them, smiling back
at them as he grew older. Once he was bigger, he wanted those teddy bears, whom
he designated in his practical way as “Red Bear” and “Blue Bear” for the color
of the bows around their necks, beside him in his bed every night. When I would
check on sleeping Alex, I would find Red Bear and Blue Bear ever vigilant,
always awake and keeping watch over my boy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over time, Alex apparently outgrew the bears, who were
relegated to his bedroom closet for many years. Most people would have thrown
them away after all that time, but I felt sentimental about those bears that I
had lovingly sewn and stuffed while Alex was stuffed in my pregnant belly.
Moreover, knowing that Alex often rediscovers items from his past and enjoys
the nostalgia of remembering his childhood, I thought he would be upset if
those bears ever disappeared.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Recently, those bears found themselves relocated from the
dark closet to their formerly honored positions in Alex’s bed. Checking on Alex
before I went to bed one night, I discovered Red Bear and Blue Bear on Alex’s
pillow, one on each side of his peacefully sleeping head. Since they were not
there when I said bedtime prayers with him before he went to sleep, Alex must
have dragged them out of the closet sometime after we recited bedtime prayers
and said, “Goodnight, sleep tight, don’t let the bedbugs bite! Love you!” in
unison, as we do every night.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While sleeping with teddy bears is not something typical
twenty-seven year old young men should be doing, Alex’s life is not typical. In
most ways, he is a little boy in an adult’s body that doesn’t function properly
because of autism. His hands don’t cooperate, so he relies upon us to help him
with getting dressed, grooming himself, and fixing food. The words don’t come
easily, so he trusts us to speak for him when he can’t tell what he needs.
Sensory issues make the world too loud, too bright, and too irritating for him,
but he knows we do our best to ease the distractions and soothe him. For these
and other reasons, he cannot live independently and needs our help to function
on a daily basis. Alex's life is not typical in any way, shape, or form.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Perhaps he sought out those teddy bears for additional
comfort. Although they are a bit faded and worn with a few stitches I added by
hand years later to reinforce the seams that had come undone because they were
so well loved, their big eyes, silly grins, and colored bows are still
familiar. Their stuffing has flattened over time, but they are still soft. I’d
like to think that as they surround Alex’s precious head, they protect his mind
and give him peace. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This winter, Alex also began sleeping with a quilt I made
for him when he was a little boy. Knowing his love of numbers and letters, I
found materials for the quilt squares filled with these beloved symbols and
stitched them together for him as I had the bears a few years earlier. Since
the quilt was made for a smaller version of Alex, it cannot cover his current
nearly six-foot frame. However, he is content to have the “1997 blanket,” as he
has dubbed it, cover his feet and keep them warm.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not long ago, I asked him why he liked sleeping with the
bears and quilt again, and he smiled and told me, “Because Mommy made them for
Alex.” While these comfort items may serve as nostalgic reminders of a simpler
time in his life, I think Alex now appreciates the effort I made by sewing the
bears and quilt especially for him. Maybe he sees them as symbols of the all-consuming
love I have for him that wants to protect him, to comfort him, to make his life
happy and content. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As I continue to pray that God will completely heal Alex of
autism so that he can live a fulfilling and independent life, I hope that he someday
will not need the comfort of Red Bear and Blue Bear and the 1997 blanket. If
they wind up back in the closet as fond reminders of an earlier time, I will be
content knowing that they served their purpose. In the meantime, I hope he
views these old, familiar bits of cloth stitched together as a reminder of his
mother’s unconditional love for her precious son.</div>
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<div class="MsoNormal">
“So give your father and mother joy! May she who gave you
birth be happy.” Proverbs 23:25</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-63339417468958887902019-05-05T08:46:00.000-05:002019-05-05T08:46:49.978-05:00Individualized Support Plan<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWFzGDet1Yb2PGup-8_FLxnIh9qUIc1nFIaUdHGhgG9-0YeMhFNxFjUdsPqTXwFIXJvBJHyAmnnk4RqMgmd_jEx1qGkh5CUcMsTNY9gNZRZ5Q9iT24qftXyDd5qyW30F8hpiho4O9Ib7s/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="224" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWFzGDet1Yb2PGup-8_FLxnIh9qUIc1nFIaUdHGhgG9-0YeMhFNxFjUdsPqTXwFIXJvBJHyAmnnk4RqMgmd_jEx1qGkh5CUcMsTNY9gNZRZ5Q9iT24qftXyDd5qyW30F8hpiho4O9Ib7s/s200/images.jpg" width="199" /></a></div>
<div class="MsoNormal">
A week and a half ago, we met with Alex’s case manager and
behavioral therapist for his regular quarterly meeting. As I have mentioned in
previous blog entries, those who receive support services from the state meet every
three months with their teams of professionals to go over progress and goals
and to discuss any concerns. We have been blessed with outstanding people who
work with Alex to develop his skills and who truly care about our family. The
primary topic for this particular meeting was to go over Alex’s individualized
support plan, which is similar to an individualized educational plan (IEP) developed
by special educational personnel for special needs students. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last year, Indiana’s Bureau of Developmental Disabilities
Services implemented Person-Centered Planning that requires gathering a great
deal of information in hopes of providing better services for individuals with
developmental disabilities. [To read my April 22, 2018, blog entry, “Person-Centered
Planning,” explaining this process, please click <a href="http://pambyrne.blogspot.com/2018/04/person-centered-planning.html">here</a>.] Although Alex’s case
manager has only been working with us for a little over a year, she has done an
excellent job getting to know him and collecting the details needed to develop
this comprehensive report. Currently, Alex’s person-centered individualized
support plan is 32 pages long and will likely increase with the additions we
made at our last quarterly meeting.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Prior to our meeting, his case manager sent me a draft copy
of the plan, which I read and summarized for Ed, who trusts my judgment.
Essentially, Alex’s goals are to continue progress in the following areas:
improving his communication skills, engaging in community activities, developing
coping skills to deal with anxiety, and achieving greater independence.
Considering that autism impacts his language, social, and motor skills, as well
as anxiety, these goals make complete sense and are worthwhile pursuits.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Reading the positive statements in
the document noting Alex’s achievements and progress over the past few years was quite encouraging.
However, his case manager wisely worded these comments, noting that continued
success requires keeping vital supports in place, such as ongoing behavioral therapy
and music therapy. Those of us who know Alex well recognize how valuable his therapists
are to his continued progress toward these essential goals.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After going through the draft copy of the plan prior to the
meeting, I made notes regarding changes or additions that might give more insights
into Alex and his current interests and concerns. For example, the report noted
that Alex’s hardest time of day was between 9:00-10:30 A.M. While this was true
several years ago because his bedtime medications had worn off and the morning
doses had not yet taken effect, this is thankfully no longer true. In fact, Alex
has improved so much that he only takes two medications at bedtime and awakens
pleasant natured. Fortunately, he doesn’t have any time of day that is
difficult for him, and we are grateful for this significant progress.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, he still struggles with sensory issues that can
trigger anxiety. For example, because his hearing is quite acute, noises can
startle him, and he can become overwhelmed by loud music or sounds. If we are
out in public, and volume annoys him, we may have to leave. In addition, he has
had difficulty recently with weather bothering him, especially rain. I have
read that dogs don’t like to go out in the rain, not primarily because they don’t like
getting wet, but because their ears are sensitive to the sounds of raindrops. Similarly,
I suspect that Alex hears the sound of rain amplified to a level that makes him
prefer to stay indoors. With this in mind, we asked his case manager to add the
following to his report: “Inclement weather, such as rain, extreme cold, and
wind, can bother Alex, due to sensory issues. He also has anxiety about
thunderstorms and tornadoes.” Hopefully, these added details will enable others
who work with Alex to understand his weather-related concerns.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Additionally, we requested that a few more details be added to
the “About Me” introduction to the document under the subheading “What people
like and admire about me.” While his case manager had done a good job of
explaining tasks Alex does to help around the house, we wanted the report to
describe Alex’s positive traits and personality a bit more. Trying to be
objective, I considered what other people have said and noticed about Alex.
With these observations in mind, we asked that Alex be described in the report
as pleasant and amusing as well as noting that he likes to share interests with
others and strives to do his best. His behavioral therapist agreed with these
descriptors of Alex, and his case manager confirmed the value of including
these details in the report.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Finally, in the “Social and Spirituality” section, we felt that
addressing Alex’s faith in God was necessary to understanding him. Although
church services can prove overwhelming to Alex with sensory issues, such as the
vibration of the church organ and the echoing sounds of a sanctuary, he has
developed a strong personal faith reinforced through our religious teaching at
home. Every night, he asks God to bless a long list of people who are important
to him––from family and friends to his support team to former Chicago Cubs
baseball player Sammy Sosa. Consequently, we requested that his report include
the following statement: “Faith is important to Alex, and he regularly says
bedtime prayers.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Even though Alex’s individualized support plan can be
daunting to read, especially as it details the obstacles autism has imposed
upon his life, the positive tone regarding the progress he has made with time
and support offers encouragement for the future. As we keep working to develop
his communication, social, and motor skills, as well as to develop his coping
skills and work toward greater independence, we continue to pray for God’s
healing. Furthermore, we hope that someday Alex will no longer need a support team
or an individualized support plan, knowing that with God all things are
possible.</div>
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<div class="MsoNormal">
“Jesus looked at them intently and said, ‘Humanly speaking,
it is impossible. But with God everything is possible.’” Matthew 19:26 </div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-69734955539081467412019-04-28T10:39:00.000-05:002019-04-28T10:46:02.513-05:00Recognizing Autism in Babies<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx3NC0zVykPEyo5N6X4sG9RtDHwBN7MdSf5MmrPdnKFghNBovEtDusFM8cNgCOoE8-vKpOw2cTh1JefBIs7_9OdkPqKQ7v2VgtOZVZxKvpfXGC8TTDBGEMZCRNyIfqZwAgmW-C4Ruu5tQ/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx3NC0zVykPEyo5N6X4sG9RtDHwBN7MdSf5MmrPdnKFghNBovEtDusFM8cNgCOoE8-vKpOw2cTh1JefBIs7_9OdkPqKQ7v2VgtOZVZxKvpfXGC8TTDBGEMZCRNyIfqZwAgmW-C4Ruu5tQ/s200/imgres.jpg" width="200" /></a></div>
<div class="MsoNormal">
According to research, some common traits of autism usually
emerge in infants during the ages of 9-16 months. However, parents may not be
familiar with these early signs, which can cause delays in having their
children diagnosed with autism. Often, children are not diagnosed with autism
until they are four or five years old, postponing early intervention that can help
address issues associated with autism. This month, two notable organizations
introduced helpful guides for parents of infants to help them identify
concerning characteristics related to autism so that they may seek further
assessment.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
According to “Early signs of autism for infants and
toddlers,” written by Joe Dziemianowicz and posted April 1, 2019, on the <i>Today</i>
show website, a new online resource called <i>Baby Navigator</i> can help parents
recognize common traits of autism. [To read this article, please click <a href="https://www.today.com/parents/early-signs-autism-infants-toddlers-t151329?fbclid=IwAR2xFQ18EeUHSNmPd3I-9Rnkj-aLkoVed2Zw9FdxjQToU_yYi7xYiln4CgU">here</a>.] Developed
by the Florida State University College of Medicine’s Autism Institute, under
the direction of Amy Wetherby, Ph.D. in communication disorders, this site is
designed for parents.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As part of the <i>Baby Navigator</i> site, <i>Autism Navigator</i> offers
a wealth of free resources for families, including photos, videos, and
screening tools for babies 9-18 months. [To view this site, please click <a href="https://autismnavigator.com/16-early-signs-of-autism-by-16-months/">here</a>.]
The goal of this site is to help parents recognize the first signs of autism to
assist in early detection and diagnosis. A primary resource of <i>Autism Navigator</i>
is an online text illustrated with photographs, <i>16 Early Signs of Autism by 16
Months</i>. This book not only defines common characteristics found in babies with
autism but also contrasts these behaviors with those of typical infants. In
addition, they note that if only one or two traits are exhibited, parents
should not be concerned, but babies showing four of the traits should be
screened for autism. Moreover, they recommend that those infants who display
eight or more of the traits should be referred for an autism evaluation.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The <i>16 Early Signs of Autism by 16 Months</i> include the following:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1. “Hard to get your baby to look at you”––They explain that
typical babies gaze at their parents’ face and eyes, whereas babies with autism
often do not look at faces.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2.<span style="mso-spacerun: yes;"> </span>“Rarely
shares enjoyment with you”––They note that typical babies smile and laugh,
while babies with autism may rarely smile or show facial expressions and may
have a flat affect, making it difficult to tell whether they are happy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
3.<span style="mso-spacerun: yes;"> </span>“Rarely
shares their interests with you”––They explain that babies with autism often do
not use gestures, such as pointing, or sounds or words, as typical babies do.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
4.<span style="mso-spacerun: yes;"> </span>“Rarely
responds to their name or other bids”––They describe how babies with autism may
not come when they are called or may not engage in interactive behaviors, such
as waving or looking where someone else is pointing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
5. “Limited use of gestures such as showing and pointing”––They
indicate that babies with autism often do not point with their fingers.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
6.<span style="mso-spacerun: yes;"> </span>“Hard to
look at you and use a gesture and a sound”––They explain that typical babies
use a combination of behaviors to show their interests and wants. Babies with
autism may not be able to do all three behaviors at the same time.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
7.<span style="mso-spacerun: yes;"> </span>“Little or
no imitating other people or pretending”––They note that around a year old,
babies copy others’ behavior, such as caring for a teddy bear or pretending to
cook. However, infants with autism may not display these behaviors.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
8.<span style="mso-spacerun: yes;"> </span>“Uses your
hand as a tool”––They describe how typical babies ages 9-16 months use a
variety of gestures, such as reaching and waving. In contrast, those with
autism have limited gestures and may use their parents’ hands as tools instead,
such as using a parent’s hand to point instead of their own.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
9.<span style="mso-spacerun: yes;"> </span>“More
interested in objects than people”––They explain that typical babies like to
interact, whereas babies with autism may ignore other people, especially if
they are already engaged with toys or objects.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
10.<span style="mso-spacerun: yes;"> </span>“Unusual
ways of moving their fingers, hands, or body”––They note that babies with
autism may stiffen and flare their fingers or display unusual posture.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
11.<span style="mso-spacerun: yes;"> </span>“Repeats
unusual movements with objects”––They describe how children with autism may
spin or line up objects.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
12.<span style="mso-spacerun: yes;"> </span>“Develops
rituals and may get very upset over change”––They note that typical babies
learn routines but can adapt easily to change. By contrast, babies with autism
need routine and may be inflexible and upset about change.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
13.<span style="mso-spacerun: yes;"> </span>“Excessive
interest in particular objects or activities”––They explain that infants with
autism may be overly focused and difficult to shift their attention away.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
14.<span style="mso-spacerun: yes;"> </span>“Very
focused on or attached to unusual objects”––They note that babies with autism
are often drawn to utensils or gadgets.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
15.<span style="mso-spacerun: yes;"> </span>“Unusual
reaction to sounds, sights, or textures”––They describe sensory issues found in
autism, such as putting hands over ears in loud environments, squinting in
bright light, and being bothered by clothing tags.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
16.<span style="mso-spacerun: yes;"> </span>“Strong
interest in unusual sensory experiences”––They provide examples of behaviors
observed in children with autism, including looking out of the sides of their
eyes and rubbing objects that have texture.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This clearly written and well-organized book offers a
valuable resource for parents of infants who may be concerned that their
children are displaying characteristics of autism. Another excellent resource
introduced this month may also provide helpful guidance for those parents of
infants concerned about their children’s development. The National Autism
Association recently published “Autism SOS” online as a simple guide to help
parents recognize signs of autism at 12-18 months and 18-24 months. [To view
this guide, please click <a href="https://www.facebook.com/NationalAutism/posts/10157294309119283">here</a>.] The letters <b>SOS</b> stand for <b>S</b>ocial Avoidance,
<b>O</b>bsession and Repetition, and <b>S</b>peech Delays.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Specifically, social avoidance in autism includes the
tendency to prefer objects to people, a lack of eye contact, and not responding
to others’ facial expressions, such as smiles. In addition, social avoidance
includes the following behaviors: not imitating parents, preferring to play
alone, and not liking being touched.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Examples of obsession and repetition commonly seen in autism
may involve children staring at their hands or objects, especially things that
spin. Moreover, they may engage in repetitive movement, such as hand flapping
or rocking. Also, they may exhibit a need for sameness and routine, and they
may become upset by sensory issues, including loud noises and bothersome
textures.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The third identifying aspect of autism, speech delays, is
critical but not as specifically addressed by <i>Autism Navigator</i>. For many
parents, speech delays are the impetus to have their children assessed for
autism. “Autism SOS” explains that speech delays involve expressive language,
such as the baby not attempting to communicate by pointing or reaching or by
making sounds like “da-da” or “ba-ba.” In addition, the child may repeat words
over and over with no real intent to communicate to others, and by two years
old, the child may not be able to produce two-word phrases. Furthermore,
children with autism may display speech delays by their lack of receptive
language, not responding to their names nor understanding simple statements and
questions directed to them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While the rapidly increasing numbers of children diagnosed
with autism are worrisome, the increase of helpful resources for parents is
encouraging. Hopefully, the availability of useful guides, including <i>Autism
Navigator</i> and “Autism SOS,” will encourage parents to seek professional help
for their children who are struggling with autism so that they can overcome
obstacles and develop skills needed to develop their full potential.</div>
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<div class="MsoNormal">
“After these signs take place, do what must be done, for God
is with you.” I Samuel 10:7</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-52212550936251431612019-04-14T10:39:00.000-05:002019-04-14T10:50:22.514-05:00On Target<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV5J_umUGDWgwB3JkD-DVuHq_J70llAl3uEKVO0LwyfwanZoIKawg2L8_fn-bZC2_e59OKpdvZJTbV84vNz7qifHDpuGslO2aOghsUywTWJBdbkPyk_nxkD5lg0AHw8B6eoAnkRFWv_i0/s1600/search.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="124" data-original-width="124" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV5J_umUGDWgwB3JkD-DVuHq_J70llAl3uEKVO0LwyfwanZoIKawg2L8_fn-bZC2_e59OKpdvZJTbV84vNz7qifHDpuGslO2aOghsUywTWJBdbkPyk_nxkD5lg0AHw8B6eoAnkRFWv_i0/s1600/search.jpg" /></a></div>
<div class="MsoNormal">
Recognizing sensory and motor issues people with autism and
other disabilities face, popular retailer Target has addressed these needs by
recently offering special lines of clothing and home furnishings. Through their
Cat & Jack clothing for children, Universal Thread clothing for adults, and
Pillowfort home items, Target now offers products thoughtfully designed with
their special needs customers in mind.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
According to articles on Target’s corporate website, <i>A
Bullseye View</i>, titled “Cat & Jack Includes Adaptive Apparel to Help Meet
the Needs of Even More Kids” and “Design for All: Cat & Jack Add Select
Sensory-Friendly Pieces for Kids,” Target began offering “sensory-friendly”
clothing in 2017. [To read these online articles, please click <a href="https://corporate.target.com/article/2017/10/cat-and-jack-adaptive-apparel">here</a> and <a href="https://corporate.target.com/article/2017/08/cat-and-jack-sensory-friendly-pieces">here</a>.] For
example, this line of clothing has stamped labels instead of tags, flat seams,
and no embellishments that may bother children with sensory sensitivity. In
addition, leggings were designed with extra room in the hips to accommodate
older children who wear diapers.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Target clothing design director Stacey Monsen knows firsthand
the difficulties of dressing a child with autism: her young daughter has autism
and was not potty trained by age seven. Working with a volunteer group of
parents and organizations who could provide input, the Target team worked to
solve some of the problems of clothing children with special needs. As Stacey
Monsen states, “My goal is to keep being an advocate, for my daughter and for
others.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not only are the Cat & Jack clothing sensory friendly,
but they also come in a wide range of sizes: toddler sizes 2T-5T and bigger
kids sizes extra small through extra extra large. Additionally, the clothes are
quite reasonably priced from $4.50-$39.99, with most priced under twenty
dollars, making sensory friendly clothing available to a wide range of
customers.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Following up on the popularity of the Cat & Jack
sensory-friendly clothing, Target introduced adaptive clothing in the fall of
2018. Using input from “real kids,” designers developed apparel to meet special
needs. Specifically, this clothing line includes snap and zip closures on the
sides and back along with abdominal access openings that are hidden. Other
features include footless sleepwear, bodysuits sized for older children wearing
diapers, and jackets with zip-off sleeves. Additionally, this clothing is made
with “extra-soft, comfortable, and durable cotton knits.” All of these adaptive
clothes were designed to make dressing easier for children with special needs
and their parents.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
According to a <i>Disability Scoop</i> online article written by
Shaun Heasley and published on January 31, 2018, “Target Adding Clothing For
Adults With Special Needs,” the retailer added a line of clothing to serve
women with sensory and adaptive needs in February 2018. [To read this article,
please click <a href="https://www.disabilityscoop.com/2018/01/31/target-adding-clothing-adults/23661/">here</a>.] The Universal Thread collection offers tops and jeans in a
wide range of adult sizes reasonably priced from $5 to under $40. Like the Cat
& Jack clothing line for children, the adult versions are
“sensory-friendly” with stamped labels instead of tags, flat seams, and
extra-soft material. The jeans have longer inseams, wider leg openings,
high-rise backs, and no pockets to make getting dressed easier.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Building on the success of the clothing lines addressing
special needs, Target has recently added sensory-friendly items to their
Pillowfort home collection. According to an online article written by Mark
Wilson on <i>Fast Company</i> published April 3, 2019, and titled “Target’s newest
furniture is for kids with sensory sensitivity,” Target is now offering
furniture items specifically designed for special needs children. [To read this article, please click <a href="https://www.fastcompany.com/90328333/targets-newest-furniture-is-for-kids-with-sensory-sensitivity">here</a>.] Just as with
their Cat & Jack sensory-friendly and adaptive clothing, Target designers
consulted with parents and children to gain input on this sensory-friendly
furniture line. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Furthermore, Target’s website details the careful thought
put into these special home items on their “Sensory Friendly Kids’ Home” page.
[To access this page, please click <a href="https://www.target.com/c/sensory-friendly-kids-home/-/N-b50sj">here</a>.] For example, the cocoon seat offers
“cradled comfort” as well as a removable, washable “super-soft” cover with a
water-resistant liner. The hideaway tent allows children a place to get away
from sensory overload while providing a carrying case for easy transport. The
crash pads, like the cocoon seats, have removable, washable covers with
water-resistant linings, as well as durable fabric and foam. The weighted
blankets, which many children with autism find soothing for sleep, have
“super-soft removable, washable covers.” As with the special clothing lines,
Target has kept these home items reasonably priced from $20-100, making them
available to most families. As Target senior vice-president Julie Guggemos
explains, “At Target, our purpose is to help all families discover the joy of
everyday life.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Certainly, Target should be commended for their concern for
special needs customers and their willingness to seek input about how to make
their lives easier and better. By offering a variety of reasonably priced clothing
and furniture that address sensory and adaptive issues, Target can successfully
meet the needs of a growing population. Indeed, through the Cat & Jack,
Universal Thread, and Pillowfort collections, Target can help families,
especially those with special needs, “discover the joy of everyday life.”</div>
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<div class="MsoNormal">
“And this same God who takes care of me will supply all your
needs from His glorious riches, which have been given to us in Christ Jesus.”
Philippians 4:19</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-54467001534522344872019-04-07T09:26:00.000-05:002019-04-07T09:26:48.416-05:00Autism by Numbers<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal">
Last Monday, April 1<sup>st</sup>, marked the beginning of
this year’s Autism Awareness Month. One of the many things I have learned from
Alex is the value of numbers and statistics, as well as qualifying figures as
“approximately” or “exactly.” In honor of my adult son with autism, I will
share some important data that demonstrate the need for autism awareness every
month, not just every April. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The sources of my information are articles from the websites
for the National Autism Association and The Autism Community in Action. [To
read “Autism Fact Sheet,” please click <a href="https://nationalautismassociation.org/resources/autism-fact-sheet/">here</a>. To read “Autism & Safety
Facts,” please click <a href="https://nationalautismassociation.org/resources/autism-safety-facts/">here</a>. To read “Autism Statistics and Cost,” please click
<a href="https://tacanow.org/autism-statistics/">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1.<span style="mso-spacerun: yes;"> </span>According to
current statistics from the Centers for Disease Control and Prevention,
approximately <b>1 in 59</b> children in the United States has autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2.<span style="mso-spacerun: yes;"> </span>The rate of
autism is <b>4.5 times</b> higher in boys than in girls: an estimated rate of <b>1 in 42</b>
boys vs. <b>1 in 189</b> girls in the U.S.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
3.<span style="mso-spacerun: yes;"> </span>Approximately
<b>40%</b> of children who have autism do not speak.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
4.<span style="mso-spacerun: yes;"> </span>Estimates
reveal <b>more than 3 million </b>people in the United States have autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
5.<span style="mso-spacerun: yes;"> </span>Since 1970,
autism rates in the U.S. have increased significantly from <b>1 in 10,000</b> to <b>1 in
1,000</b> in 1995 to <b>1 in 250</b> in 2000 to the 2018 report of <b>1 in 59</b>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
6.<span style="mso-spacerun: yes;"> </span>Even though
autism is the most rapidly increasing developmental disorder, only about <b>5%</b> of government
research funding is spent on autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
7.<span style="mso-spacerun: yes;"> </span>Autism is
often––in as many as <b>85%</b> of people with autism––accompanied by other
conditions, such as anxiety, OCD, epilepsy, allergies, asthma, autoimmune
disorders, and gastrointestinal disorders, as well as difficulties with eating,
sleeping, and sensory issues.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
8.<span style="mso-spacerun: yes;"> </span>In 2008,
researchers in Denmark discovered that people with autism have <b>double</b> the
mortality risk than typical people, primarily due to drowning and accidents.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
9.<span style="mso-spacerun: yes;"> </span>Approximately
half (<b>48%</b>) of children with autism try to wander away from safe environments.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
10.<span style="mso-spacerun: yes;"> </span>In children
with autism aged 14 and younger, <b>91%</b> of total deaths in the U.S. resulted from
accidental drowning after wandering away from a safe place in 2009, 2010, and 2011.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
11.<span style="mso-spacerun: yes;"> </span>Of adults
who have autism, <b>87%</b> live with their parents.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
12.<span style="mso-spacerun: yes;"> </span>The United
States currently spends about <b>$268 billion</b> for autism costs annually. This
amount is projected to increase to <b>$1 trillion</b> per year by the year 2025.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Behind these facts and figures are real people and their
families whose lives are impacted every day by autism. While awareness is
important, action is needed to help children and adults who are struggling with
autism. Because so many cannot speak for themselves, we must speak for them. <span style="mso-spacerun: yes;"> </span>Those who wander need to be protected
from danger, and underlying medical and psychiatric conditions need to be treated
instead of simply being dismissed. Moreover, more research needs to be done to
find the causes and cures for this lifelong disorder that is growing at
epidemic levels at great personal and financial cost. Our society can and must
do more to help these vulnerable and precious souls afflicted with autism and
their families who love and care for them.</div>
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<div class="MsoNormal">
“Teach us to number our days, that we may gain a heart of
wisdom.” Psalm 90:12</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-78916567877154603022019-03-31T10:13:00.000-05:002019-03-31T10:13:12.024-05:00Waiting for a Change<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijoaTbzF5SUTQG8TY5PTg1gScOzngeFX9p0ukcqpl3TE-8Cgk51SZ4gJjWWseLAdzZY1j1l-RWnxfRAvd9t-IPAJoRCuhaO-KTdiO3rv2nweGbuD1EfHmwz6osPfqAHqxmJPvVXIy9E-s/s1600/images+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="187" data-original-width="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijoaTbzF5SUTQG8TY5PTg1gScOzngeFX9p0ukcqpl3TE-8Cgk51SZ4gJjWWseLAdzZY1j1l-RWnxfRAvd9t-IPAJoRCuhaO-KTdiO3rv2nweGbuD1EfHmwz6osPfqAHqxmJPvVXIy9E-s/s1600/images+2.jpg" /></a></div>
<div class="MsoNormal">
“At the time I have decided, my words will come true. You
can trust what I say about the future. It may take a long time, but keep on
waiting––it will happen!” Habakkuk 2:3</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About a week and a half ago, we noticed Alex wasn’t acting
like himself. Instead of being good-natured, he was irritable. Instead of being
logical, he was irrational, jumping to ridiculous conclusions. In addition, his
OCD, which is usually controlled well by medication, was heightened as he kept
repeating the same questions and phrases. From years of experience, Ed and I
recognized these telltale behaviors as a likely sign that Alex once again had
yeast overgrowth in his digestive system, which affects his behavior
negatively.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fortunately, his doctor understands the impact yeast has on
Alex’s behavior and trusts our diagnostic skills in this area. After I sent his
doctor a brief email describing our suspicions and requesting a refill of
antifungal medication, he responded quickly and assured me that he had sent a
prescription to the pharmacy. When I went to pick up the antifungal, I was
pleased and surprised to discover that his doctor had authorized enough refills
to last a year. Clearly, he recognizes the negative effect yeast overgrowth has
on Alex, and he trusts our judgment in giving medication as needed to help Alex
heal.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As we have found from experience, the antifungal medication
makes a difference quickly. Within an hour, we see Alex become more docile and
less edgy. Within two hours, he’s content and calm, and the OCD behaviors seem
to disappear. Because he responds so favorably to the antifungal, our
suspicions regarding what made him irritable are confirmed. Since we have dealt
with these infections repeatedly for years, we know what to expect and are
always grateful that the medicine works fairly rapidly to make Alex feel
better. Waiting is easier because we don’t have to wait long to see changes,
and we are confident he will get better.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few days ago, Ed came home from work grimacing and holding
his left hand on his lower back. Some Google searching had allowed him to
diagnose himself with his first kidney stone. Despite my suggestion to go to
the emergency room that evening, he decided to try to treat the ailment himself
by drinking water and taking over-the-counter pain relief medicine. The next
morning, when the pain was getting worse instead of better, I made an
appointment for him to see his doctor, who confirmed that he did, indeed, have
a kidney stone. Even though his doctor prescribed various medications to help
the nausea and pain as well as to help the stone pass, Ed was suffering from
what he described as the worst pain he’d ever experienced in his life.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At that point, we knew he needed to go to the emergency
room, but with Alex, plans always need to be made carefully so that he doesn’t
get upset and overreact. A quick phone call to my parents, who thankfully live only
ten minutes away, solved the problem. My dad, who has dealt with kidney stones
over the years and could empathize with Ed’s pain, would take him to the ER
while my mom and I stayed home with Alex to keep him calm. As we waited, we
prayed that Ed wouldn’t have to wait long for his pain to ease.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About an hour later, my dad called to tell me that
everything was going well and that all of the medical staff had been kind and
helpful. In fact, the doctor taking care of Ed had suffered from kidney stones,
too, so he could relate to how painful they are. When the nurse gave Ed
intravenous pain medicine, she assured him that he would feel much better
within twenty minutes. While that intensely painful waiting time must have
seemed much longer, the nurse’s prediction was accurate: Ed’s pain level
dropped from the highest rating of 10 down to 1 in twenty minutes. Moreover, as
the doctor had predicted, Ed was relieved to be able to pass the stone last
night fairly painlessly without any further medical intervention. Just as with
Alex, the right medical treatment makes all the difference in the world, and
experiencing positive changes makes waiting for complete healing bearable. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While I hate that Alex and Ed had to suffer needlessly, both
of these experiences show how things can change suddenly for the better. So
much of life is spent waiting and wondering when things will change. Many times
I have sat in waiting rooms, wondering how much longer before my turn would
arrive or even if they had forgotten about me. The longer I waited, the more I
became frustrated and began questioning if I should just give up and leave. Nonetheless,
the waiting eventually ended, and my turn always arrived, despite my lack of
patience.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Similarly, the longer we deal with Alex’s issues related to
autism, I can become discouraged waiting and wondering if things will ever
change. However, experience has taught us through the years that things do get
better in time. We wondered if he would ever sleep through the night, and in
time he did. We began to lose hope that he would ever learn to use the toilet
independently, but after years he finally did. We questioned if he would ever
be able to carry on a conversation with us, and now some of our sweetest
moments are spent chatting with our fascinating and entertaining son. Somehow
the longer time passes, we think these changes for the better are less likely
to happen, but we continue to wait for the appointed time God has designated
for these milestones.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thankfully, I was raised by loving parents whom I can always
trust for help, support, and comfort, so I know that I can also trust my
heavenly Father to take care of my family. When my parents told me the other
evening that they were on their way to help us, I had no doubt that everything
would be all right. Knowing that help is coming makes the waiting easier to
take. Similarly, I can trust that God’s help is on the way, so I don’t need to
despair. If we didn’t have to wait in life, there would be no real need for
faith. Moreover, the longer I live, the more of God’s goodness I see,
fulfilling His plans, while making the waiting less wearisome and more worthwhile,
as I know that healing will eventually come in His perfect timing.</div>
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<div class="MsoNormal">
“I wait for the Lord, my soul waits, and in His word, I put
my hope.” Psalm 130:5</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-8883967809528132662019-03-24T08:42:00.000-05:002019-03-24T08:52:43.296-05:00Autism and OCD<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ_gJfL79hhqP2GTwsCaPEkbgMsgF5MVhvpZk7EH7oZ1j69qatOXb0rIYkuDL5zCUvHXGF784AWxrdLVywEPtolgPwvSbr5SljNHumV2XfLb5t8Mm2jz6Nkr-3Teng64gIgaaIkK7SOzU/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="218" data-original-width="219" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ_gJfL79hhqP2GTwsCaPEkbgMsgF5MVhvpZk7EH7oZ1j69qatOXb0rIYkuDL5zCUvHXGF784AWxrdLVywEPtolgPwvSbr5SljNHumV2XfLb5t8Mm2jz6Nkr-3Teng64gIgaaIkK7SOzU/s200/imgres.jpg" width="200" /></a></div>
<div class="MsoNormal">
Since many people with autism are also diagnosed with
obsessive-compulsive disorder, scientists have been studying how these two
conditions impact each other and differ from one another. A recent article
written by Daisy Yuhas and published online on February 28, 2019, in <i>Scientific
American</i>, “Untangling the Ties Between Autism and Obsessive-Compulsive
Disorder,” compares and contrasts these two disorders. [To read this article,
please click <a href="https://www.scientificamerican.com/article/untangling-the-ties-between-autism-and-obsessive-compulsive-disorder1/">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Research indicates that up to 84% of people with autism
suffer from some form of anxiety, and up to 17% of people with autism spectrum
disorders also have obsessive-compulsive disorder. People with autism and/or
OCD may respond to sensory stimuli in unique ways; sensory overload can cause
anxiety, which is part of OCD. Typically, those with OCD deal with obsessions,
or recurring thoughts, feelings, and ideas. They may also be driven to engage
in ritualistic, repetitive behaviors, or compulsions, attempting to get rid of
these unwanted obsessive thoughts.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In studies, researchers have observed that OCD rituals
appear quite similar to repetitive behaviors found in autism. For example,
those who have obsessions with cleanliness may wash their hands over and over,
or those who have obsessions with safety may repeatedly check to make sure
doors are locked and appliances are turned off. Typical repetitive behaviors in
autism include lining up toys or other objects in a certain order, flapping
hands and/or rocking the body, or watching a scene from a video repeatedly.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While both conditions involve repetitive behaviors,
differences exist between OCD rituals and autism behaviors. To illustrate, OCD
rituals are quite specific and must be performed in a certain way to relieve
anxiety. However, autism behaviors tend to be more generalized. Those with
autism usually have various repetitive behaviors they can choose to calm
themselves. As Columbia University professor of psychiatry Jeremy
Veenstra-VanderWeele notes, “They’re [people with autism] just looking for
anything that’s soothing; they’re not looking for a particular behavior.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although the reasons for repetitive behaviors in OCD and
autism may differ, the parts of the brain associated with both conditions appear
to be the same. Recently, scientists have discovered common pathways and brain
regions in both autism and OCD, namely the caudate nucleus located in the
brain’s striatum. The striatum area of the brain is linked to voluntary
movement and reward processing. The neural circuits running through the
striatum are involved in how behaviors start and stop, including in how habits
form. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Additionally, the caudate nucleus deals with memory,
specifically storing and processing prior knowledge and experiences to help in making
future decisions. Moreover, the caudate nucleus is crucial for using language
and learning. According to research, the caudate nucleus tends to be unusually
large in people with autism and in people with OCD. Scientists have theorized
that in people with OCD, the caudate nucleus may not be able to control transmission
of worrisome thoughts, which affects their actions and decisions. Hence,
rituals are used to cope with anxiety associated with obsessive thoughts.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While the most common intervention for OCD is cognitive
behavioral therapy, those who have dual diagnoses of autism and OCD usually do
not benefit from this treatment method. In cognitive behavioral therapy (CBT),
therapists help people discover new coping techniques by changing their thought
patterns. However, researchers note that people with autism tend to have
difficulties imagining situations and alternative outcomes. For this reason,
CBT may need to be individualized to meet the needs of each person. For
example, children with autism may benefit from having their parents included in
the therapy sessions. Other people with autism may find CBT more useful if
language is adapted, visuals are provided, and/or rewards are offered. While personalization
of CBT therapy may require more effort, the effectiveness of this therapy will
likely increase.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Even though autism and OCD share common characteristics,
such as repetitive behaviors in response to sensory overload and anxiety as
well as involvement of a specific area of the brain, differences exist between
ways of seeking calming behaviors and the effectiveness of standard treatment.
For those dealing with both autism and obsessive-compulsive disorder,
therapists need to individualize methods of treatment, teaching calming skills
and coping methods so that their clients can enjoy a better quality of daily
life.</div>
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“For the Lord your God is living among you. He is a mighty
savior. He will take delight in you with gladness. With His love, He will calm
all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-81991049071160186032019-03-17T09:53:00.000-05:002019-03-17T12:44:45.804-05:00Change of Plans<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm8-ipdQej1tT9gZoDFPN2axBtDw6L5zHA79JPJqWqhapyd6kQB6jFwNugljSUSPp9_EbYzBbN-A-cjRyLFX9HhcXmTjMSyhFyXkZF6f0blHIxf3REcSSqjYzAwzjHA9AuHf4Rxlt0s7A/s1600/imgres.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="259" data-original-width="194" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm8-ipdQej1tT9gZoDFPN2axBtDw6L5zHA79JPJqWqhapyd6kQB6jFwNugljSUSPp9_EbYzBbN-A-cjRyLFX9HhcXmTjMSyhFyXkZF6f0blHIxf3REcSSqjYzAwzjHA9AuHf4Rxlt0s7A/s200/imgres.png" width="149" /></a></div>
<div class="MsoNormal">
When good things happen, people often attribute them to
fortunate coincidences or lucky breaks. Today, on St. Patrick’s Day, one might
even give credit to "the luck of the Irish.” However, I know that these
benefits are not simply random events but are instead blessings, and I’m
constantly looking for the hand of God in everyday life. Last week, I didn’t
have to look far, as we saw God’s attention to detail as changes in plans made
our lives easier.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two weeks ago, Alex was scheduled to have his regular
six-month cleaning and check-up at the dentist. Up until a few years ago, we
took him to pediatric dentists who specialized in treating disabled patients,
but then we switched him to our family dentists. Because our dentists and their
staff are so kind and understanding of Alex’s needs, Alex loves going for
dental appointments. He is especially fond of his hygienist, who is wonderful
with him, kindly explaining what she is going to do beforehand so that he’s not
taken by surprise and constantly praising him for doing a good job.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The day of Alex’s scheduled appointment, the office called
to tell me that his hygienist would not be there that day. They gave us the
option to keep his appointment and have another hygienist clean Alex’s teeth or
to reschedule another appointment with his regular hygienist. Knowing that Alex
would prefer to see his beloved hygienist, I opted to reschedule his
appointment for next month.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last Wednesday morning, I was surprised to receive a call
from our dentists’ office telling me that Alex’s hygienist had an appointment
available that afternoon if we wanted it. Although this was another sudden
change in plans, I thought Alex would be pleased to see his hygienist sooner
than expected. After asking him if he would like to go to the dentist, he
decided he did, and we took the offered appointment that day. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The day that Alex was originally scheduled to go to the
dentist was a bitterly cold and windy day. In fact, I had considered canceling
his appointment because I wasn’t certain that we could convince him to go in
the bad weather. By contrast, last Wednesday was mild and fairly warm, and we
knew he would be fine going out in the pleasant weather. Even his dentist
remarked on what an improvement in the weather there had been between the two
days. I have no doubt that God rearranged the details to make things easier for
Alex, and in turn, for us.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Alex’s appointment went remarkably smoothly, as he
interacted nicely with his hygienist and dentist and handled the cleaning and
check-up with complete calm. His hygienist commented that Alex keeps getting
better and better every time she sees him, which was encouraging. An added
bonus was that Alex had no cavities, so he doesn’t need any additional work and
doesn’t need to go back for another six months. Despite the changes to the
original plans, or perhaps because of those last-minute changes, Alex adapted
and handled them better than we could have anticipated.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The following day, Alex was scheduled for music therapy. As
I have explained in previous blog entries, Alex is still adapting to having
music therapy at his therapist’s office instead of having in-home sessions.
After sensory issues overwhelmed Alex for the last session, his therapist
decided to do the next session at our home. As I expected, Alex did very well
in the more comfortable home setting for this most recent music therapy
session.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Besides the session going well, we were also thankful Alex
was at home for another reason. Shortly after his therapist left, I could hear
the local tornado sirens sounding, and the television weather reports issued a
tornado warning. Since Alex has anxiety about tornadoes, we calmly took him to
our basement and reassured him that we were safe there. Fortunately, the
tornado warning did not last long, and the tornado that caused the warning to
be issued was small and far from our home. However, had we gone to the music
therapist’s office that day, we would have been driving home with the tornado
sirens blaring and Alex likely having a meltdown all the way home in the car. Once
again, we felt blessed that God had arranged, or rearranged, the plans in our
favor.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Seven years ago this month, we made our most difficult
decision as parents to have Alex hospitalized for debilitating anxiety. After
trying for months to help him ourselves and unable to find anyone locally who
knew how to help, we took him to a facility in an adjoining county. As
upsetting as that time was, we know that God had arranged those plans, too.
From that difficult experience, we gained a team of dedicated professionals who
knew how to help Alex and how to support us as parents. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Through the guidance of the hospital social worker, we
learned how to navigate the state system of getting disability services. In
addition, we learned the value of having medical power of attorney for Alex and
were blessed to have an attorney friend who came to our home on a Sunday
afternoon to draw up the needed paperwork right away. The psychiatric nurse
practitioner assigned to Alex has the reputation of knowing more about adults
with autism than anyone in our area, and she continues to oversee his
medications. After this time of crisis, we gained an excellent case manager to act as
Alex’s advocate and oversee his state disability services, a phenomenal
behavioral therapist to help him deal with anxiety, and a trusted respite
caregiver who treats Alex as a friend. Additionally, we were able to reconnect
with his outstanding music therapist after taking a break due to Alex’s
anxiety. <span style="mso-spacerun: yes;"> </span>God knew that we needed
all of these people in our lives, and He brought them to us to help make Alex
better.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although things seemed to be falling apart at the time, God
was assembling all the pieces and putting them together for us in ways we had
never considered. Whenever I fret about what the future holds for Alex, I need
only to look back at the past to see how God has always provided what we need.
Certainly, there is no reason to worry because I believe that His hand will
continue to move people and circumstances where they need to be. Moreover, I
have no doubt that God’s plans for Alex are better than I can even imagine.</div>
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<div class="MsoNormal">
“‘For I know the plans I have for you,’ declares the Lord, ‘plans
to prosper you and not to harm you, plans to give you hope and a future.’”
Jeremiah 29:11</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-91468024200678993002019-03-10T09:23:00.000-05:002019-03-10T09:23:59.640-05:00Censorship<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj24dNKbO7fuVh4JkdS6WEzngBrTKbrFXi1DXxyAtOQ0hFpDwFkwGyPdSHRYKEbvc32ttq3UqwD19qk7PNe8F94hboIWYF2gKlNgpmxFHAcfIXb1Atd4R0bcK7b15K-wvM7apUaE5gvJ1k/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="226" data-original-width="223" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj24dNKbO7fuVh4JkdS6WEzngBrTKbrFXi1DXxyAtOQ0hFpDwFkwGyPdSHRYKEbvc32ttq3UqwD19qk7PNe8F94hboIWYF2gKlNgpmxFHAcfIXb1Atd4R0bcK7b15K-wvM7apUaE5gvJ1k/s200/images.jpg" width="197" /></a></div>
<div class="MsoNormal">
Many autism parents have felt great frustration as the
government seems to have little interest in pursuing why autism rates are
rising rapidly, what causes autism, and what can be done to help those affected
by autism. However, one Democratic congressman seems intent on making sure no
one has access to information questioning potential connections to vaccines. Recently,
U.S. Representative Adam B. Schiff from California sent open letters to the
CEOs of Amazon, Facebook, and Google expressing his concern that these major
Internet entities are promoting “products and content that discourage parents
from vaccinating their children, a direct threat to public health.” [To read
this letter, please click <a href="https://schiff.house.gov/news/press-releases/schiff-sends-letter-to-amazon-ceo-regarding-anti-vaccine-misinformation">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Describing these Internet sites as a “primary source of
information” for many Americans, Congressman Schiff, indulging in hyperbole,
urges these Internet companies to recognize their responsibility by not adding
to this “growing public health catastrophe.” Apparently not trusting his
constituents nor any other Americans to use critical judgment when seeking
information online, Rep. Schiff wants to ensure any information contradicting
the complete safety of vaccines is eliminated from Amazon and social media
sites, including YouTube, Pinterest, and Instagram, as well as Facebook and
Google. He worries that “even parents and guardians who seek out accurate
information about vaccines could unwittingly reach pages and videos with
misinformation” and be unable to make decisions for themselves regarding
vaccine safety. By presenting only one side of the issue, he hopes to make all
parents compliant in vaccinating their children.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Jumping on the pro-vaccine bandwagon, CNN business writer Jon
Sarlin posted an online article, “Anti-vaccination conspiracy theories thrive
on Amazon,” on February 27, 2019. [To read this article, please click<a href="https://www.cnn.com/2019/02/27/tech/amazon-anti-vaccine-books-movies/index.html"> here</a>.]
Like the congressman, the writer indicates concern for those who may not be
able to think for themselves and wants to limit the information to only one
point of view. He states, “But perhaps more disturbing from a public health and
misinformation perspective, there were also books [on Amazon] that people
simply searching for information––new parents, for instance––could mistake for
something offering neutral information accepted by the public health
community…” However, insisting upon banning books sets a dangerous precedent
for our society.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not surprisingly, when Amazon removed anti-vaccine
documentaries from its streaming service, Amazon Prime Video, CNN gleefully
reported this news and seemed to take part of the credit for this act of censorship.
On March 1, 2019, Jon Sarlin wrote another article, “Anti-vaccine movies disappear
from Amazon after CNN Business Report.” [To read this article, please click
<a href="https://www.cnn.com/2019/03/01/tech/amazon-anti-vaccine-movies-schiff/index.html?fbclid=IwAR14HaYaaDgBZyJqEORfZuVgIqVH5a463l9widBSPfFeNfta2wpg6UsOY_U">here</a>.] While the reporter was pleased that Amazon had removed these videos, he
expressed concern that Amazon continues to sell books offering an alternative
position. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
According to CNN, a Facebook spokesperson explained that
they have “taken steps to reduce the distribution of health-related
misinformation on Facebook, but we know we have more to do. We’re currently
working with outside experts on additional changes that we’ll be announcing
soon.” One wonders what constitutes “health-related misinformation” and what
medical training these “outside experts” have. In a more decisive action to
limit point of view, Pinterest announced a temporary ban to block all vaccine
searches. Clearly, social media is acceding to the pressure put to bear by
those who want only pro-vaccine perspective presented.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In another online article posted March 7, 2019, <i>Wired</i> describes changes Facebook will make. [To read this article, please click
<a href="https://www.wired.com/story/facebook-anti-vaccine-crack-down/?fbclid=IwAR3K76NNUMGhoruVjRrGnFNS5uN2BypDnGIoEA0xA4fsi1OnX6eko5A_4rg">here</a>.] In “Facebook Will Crack Down on Anti-Vaccine Content,” Louise Matsakis
explains that Facebook has announced that they will no longer promote
anti-vaccine information through ads or recommendations. Furthermore, they will
make this topic less prominent in search results and news feeds, reducing the
rankings of pages and groups that “spread misinformation about vaccines.” In
addition, Facebook is examining ways to provide information from “expert
organizations” regarding vaccines.<span style="mso-spacerun: yes;">
</span>Similarly, Instagram will not recommend content or hashtag search
results they deem as “vaccine misinformation.” This suppression of information
should be worrisome to those who value critical thinking. As novelist George
Orwell predicted, through government officials, the mainstream media, and
social media that want to dictate what is “misinformation” and what is not, “Big
Brother is watching you.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To give Rep. Schiff his due, he probably has good intentions
and believes that he is protecting those he deems not able to think for
themselves. In his press release regarding his letters to the social media
giants, he strongly asserts his faith in vaccines: “The scientific and medical
communities are in overwhelming consensus that vaccines are both effective and
safe. There is no evidence to suggest that vaccines cause life-threatening or
disabling diseases, and the dissemination of unfounded and debunked theories
about the dangers of vaccines pose [sic] a great risk to public health.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, Rep. Schiff apparently has not read the information
on the government’s own Centers for Disease Control and Prevention’s website,
or he would realize that evidence indicates the potential for vaccine harm. [To
access this site, please click <a href="https://www.cdc.gov/vaccines/vac-gen/side-effects.htm">here</a>.] Specifically, the MMR (Measles, Mumps,
Rubella) vaccine can cause “deafness, long-term seizures, coma, or lowered
consciousness, and brain damage.” The Varicella (Chickenpox) vaccine can cause
“infection of lungs (pneumonia) or the brain and spinal cord coverings
(meningitis).” The DTaP (Diphtheria, Tetanus, and acellular Pertussis) vaccine
can cause “non-stop crying, for 3 hours or more (up to about 1 child out of
1,000)”; “seizure (about 1 child out of 14,000)”; and ‘high fever, over 105
degrees F (about 1 child out of 16,000).” In addition, the CDC site warns of
the potential side effects with any vaccine: “As with any medicine, there’s a
very remote chance of a vaccine causing a serious injury or death.” Clearly,
vaccines are not as safe as Rep. Schiff and the media would like everyone to
believe. Parents should be aware of potential risks––no matter what they
are––before they vaccinate their children.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One even wonders why the media wants to remove the
alternative views. In the <i>Wired</i> article, the writer cited information in <i>The
Atlantic</i> that noted the “majority of anti-vaccination content on Facebook
appears to originate from only a handful of fringe sources.” While I question
that assessment, if they believe this to be true, they should have nothing to
fear from a few they deem as unreliable sources. Moreover, despite Rep. Schiff’s
concerns that anti-vaccine information is leading to a “growing public health
catastrophe,” there appears to be no evidence of this impact.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As Louise Matsakis notes in the <i>Wired</i> article, “It’s not yet
clear whether the proliferation of anti-vaccination content online has led to a
significant decrease in vaccination rates in the United States.” Specifically,
she cites CDC data that shows that the number of children under the age of
three who have received the first dose of the MMR vaccine “has remained steady
for years.” If, indeed, those anti-vaccine views essentially have no effect,
why must they be silenced?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Until a definitive cause has been established for autism,
nothing should be ruled out completely. In order to make informed decisions, we
must have all the information, not just what politicians and the media have
determined that people in our free society can know. We must have access to
many viewpoints without censorship and continue to seek the truth. As Jesus
said in John 8:32, “And you will know the truth, and the truth will set you
free.”</div>
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<div class="MsoNormal">
“Then everyone who has eyes will be able to see the truth,
and everyone who has ears will be able to hear it.” Isaiah 32:3</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-47967370377530644992019-03-03T09:38:00.001-06:002019-03-03T09:38:11.501-06:00Dealing with Detours<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal">
“Detour, there’s a muddy road ahead. Detour, paid no mind to
what it said. Detour, oh, these bitter things I find. Should have read that
detour sign.” ~ “Detour” by Paul Westmoreland</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In last week’s blog entry, I described how Alex became
agitated during music therapy and responded by pounding on the therapy room door.
Essentially, he was probably trying to communicate that he wanted to get out of
that room. He was overwhelmed by sensory stimuli––nearly falling out of his unsteady
chair and adapting to a new fan––along with having to wait while listening to
others’ concerns about the office bathroom being out of order. After
redirection to use his hands to play bongos instead taking out his frustration
on the door, he was able to calm himself and finish the session successfully.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although I could have dismissed that situation as an
isolated incident, I know Alex well enough to be certain that he would have
trepidation about the next music therapy session. Not wanting him to use the
door for a percussion instrument again, I considered ways to prevent a repeat
performance. As Alex’s parents, Ed and I have always tried to smooth his path
in life by removing any obstacles we can and by preparing him for those we
cannot remove. However, we also know that life often presents sudden detours
that he may have to endure.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When Alex was younger, he would become anxious if he saw a
detour sign along the road. He knew this meant that his beloved routine routes
would change, and that made him fret. To ease his concerns, I would remind him
of an old song my dad likes to sing. From the back seat of the car, we would
hear Alex imitating Grandpa by singing in a deep voice, “Detour, there’s a
muddy road ahead…” Somehow singing about the detour calmed his fears and made
him less worried about having to change course.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If a simple song could help him cope, I knew that Alex could
learn other ways to deal with situations that take him by surprise. During his
behavioral therapy session last week, we discussed with his therapist the
circumstances that led up to Alex getting overwhelmed at music therapy. While
his therapist sympathetically understood why Alex had become upset, she also
helped him to understand that he can control his reactions when he feels out of
control. After working with Alex for more than five years, she not only knows
him well, but she also knows how to bring out the best in him.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As she went through the chain of events that led up to his
upset, she offered him ways to keep himself calm through deep breathing,
repeating positive affirmations (Alex’s favorite: “Everything will be all
right.”), and asking for help. By asking him questions, she was able to discern
what was really bothering him. No, the new fan did not upset him; in fact, he
liked it. Yes, he was upset about the chair tipping and worried that he might
fall. In addition, she discovered something he had not told me: the room was
too hot. Since Alex is very sensitive to temperature changes, that alone could
have set him off. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After getting input from Alex, she and I worked with him to
brainstorm ways to make the next session better for him. Since the heat seemed
to bother him, I told him that he would wear a short-sleeved shirt instead of a
long-sleeved shirt for the next session. In addition, since he didn’t like having
to wait, we would plan to get there right before the scheduled time instead of
a few minutes early. Finally, his therapist, who is familiar with the music
therapy office from having meetings there, suggested asking his music therapist
to bring a chair from the conference room. She remembered that those chairs
were sturdier than the folding chair in the session room and less likely to
tip. After talking with her, both Alex and I felt more confident about going to
the next music therapy session.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Because Alex’s music therapist has also worked with him for
more than five years, I knew that he would be flexible about making changes to
help Alex. After sending him an email explaining Alex’s concerns and the
potential solutions we had brainstormed, he immediately called me on the phone
and enthusiastically agreed with our ideas. Moreover, he had a better
suggestion: instead of moving a chair from the conference room, he would move
Alex’s sessions to the conference room. Since that room is larger and has a
table for Alex to set his drink, as well as sturdier chairs, he thought the
conference room would be a good change. If the new setting did not seem to
help, he kindly offered to resume providing Alex’s therapy sessions in our
home.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After telling Alex about the new venue for music therapy, he
seemed a bit nervous about the change. However, I explained the advantages of
the conference room, and he was willing to try. Just to make sure we were aware
he wasn’t thrilled about this detour, he waved “the claw,” a gesture he uses to
let us know he’s not happy by lifting his arm, bending his wrist at a 90 degree
angle, and shaking his hand in the air in a way reminiscent of the 80’s “Walk
Like an Egyptian” dance. After waving “the claw” once at me and once at his
music therapist, he was cooperative, and his therapist described the session as
“fantastic” with no other negative behaviors. Alex had detoured into the
conference room and decided the new route was more scenic than the old one. By
being understanding and willing to accommodate Alex’s sensory issues, his
therapist was rewarded with a cooperative client.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since autism and anxiety make navigating life more difficult
for Alex, he relies upon the adults he trusts to help him cope with circumstances
that make him nervous. We are certainly blessed to have a wonderful support
team of professionals who not only sympathize with our concerns but who also
actively seek ways to make Alex’s life easier and to teach him how to deal with
the unexpected situations that make him uneasy. Sometimes, something as simple
as changing setting can make a difference, assuring Alex that, indeed,
everything will be all right.</div>
<div class="MsoNormal">
<br /></div>
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<span style="font-family: Cambria; font-size: 12.0pt; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Cambria; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">“Show me the right path, O
Lord; point out the road for me to follow.” Psalm 25:4</span><!--EndFragment-->
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-20824515486341035832019-02-24T10:11:00.000-06:002019-02-24T10:11:34.078-06:00Searching for Signs<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9nvDwya2h_0t77yCZYOHfl2JLubUQokm1LPbXj0tcR0k3n3n8WP9-q7Thpg8j5X36t4ae3yNWkoIPaAlK37KU2t5Sjk2G58gQTsi0BiHSszwkGWBmSE92G754FZla6L-iQOnfGAIcN4/s1600/imgres.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="159" data-original-width="318" height="100" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9nvDwya2h_0t77yCZYOHfl2JLubUQokm1LPbXj0tcR0k3n3n8WP9-q7Thpg8j5X36t4ae3yNWkoIPaAlK37KU2t5Sjk2G58gQTsi0BiHSszwkGWBmSE92G754FZla6L-iQOnfGAIcN4/s200/imgres.png" width="200" /></a></div>
<div class="MsoNormal">
Last Thursday, I was sitting in the waiting room during
Alex’s music therapy session when I heard a knocking sound. As I listened, I
could tell that the sound was coming from the direction of the therapy room
where Alex was supposed to be singing and playing keyboard. At first I thought
perhaps he or his music therapist might be playing a drum, but then I realized
the sound was definitely a hand knocking on a door, and I was certain that Alex
was responsible for the insistent knocking.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although I never want to interfere with his therapists’
sessions, I also want to provide back-up for them if he’s being uncooperative.
Consequently, I quietly walked back to the therapy room and stood outside the
door, listening and trying to assess what was happening. Standing in the
hallway, I could hear Alex continuing to knock on the closed door from the
inside of the room as his therapist gently tried to redirect his behavior.
Since Alex wasn’t responding, I decided to knock on the door, let myself in, and
try to help the situation.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While Alex seemed a bit surprised to see me, his therapist
looked relieved that I was there. He explained that Alex had been fine until
his chair had tipped and he had almost fallen out of it. To be honest, that
folding chair had worried me the first time I saw it because it’s not
particularly sturdy. Because of OCD, Alex tends to fixate on things that happen
and takes longer to get over them. He was likely replaying that moment of fear
of falling, despite his therapist’s reassurances that he was all right. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When his therapist asked Alex for a reason why he was
knocking on the door, Alex kept responding, “Nothing.” I suspect that Alex may
have been dealing with anxiety by hitting the door instead of his therapist
(which is a good thing) or seeking attention or trying to escape the setting by
knocking on the door and hoping to be let out of the room. Perhaps a
combination of these was the catalyst for Alex’s insistence on knocking on the
door. When Alex is upset, he has trouble explaining what he’s feeling. However,
his therapist’s calm approach didn’t seem to make Alex stop his behavior.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Using my middle school teacher voice, I firmly told Alex,
“Knock it off!” After asking him what he was doing and getting no reply, I told
him that pounding on the door was a dumb thing to do because it was annoying
and could hurt his hand. Wondering if his therapist thought I wasn’t handling
Alex properly because I was too blunt, I looked over Alex’s shoulder to see his
therapist covering his face, trying to conceal his laughter from Alex. At least
he found me amusing and didn’t seem to disapprove of my methods. On the other
hand, Alex knew I wasn’t happy with his behavior, so he stopped knocking on the door, and he wasn’t laughing. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then his therapist mentioned that Alex seemed to need to
move his hands, so he had offered for Alex to give him “high fives,” but Alex
would only lay his hands gently over his therapist’s palms. That was actually a
good sign of self-control on Alex’s part: he didn’t use this opportunity to
slap his hands hard to let his therapist know he wasn’t happy. Instead, I
suggested that his therapist get one of the bongo drums for Alex to play and
get rid of his nervous energy. While Alex wasn’t keen on the idea at first, I
asked him to play fifty times with his left hand, then with his right hand,
then with both hands. By incorporating numbers into the activity, he was
willing to cooperate. After some drumming, Alex was calm and ready to finish
the session on a good note by singing the familiar “Goodbye” song that ends every
therapy session.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Even though I felt bad that Alex had exhibited challenging
behaviors during the session and that I had intervened, I sensed that his
therapist welcomed my support and some insights I shared. For example, I
noticed that the therapy room has a new fan, which may have over-stimulated
Alex with its appearance, sound, and feel since he is especially sensitive to
touch and sound. In addition, before the session ever started, Alex’s patience
was tested because he had to wait for his therapist, who needed to finish his
lunch quickly and to text another client’s mother, which meant that Alex’s
session didn’t start exactly on time, as he prefers. Also, the bathroom at the
office was out of order, which understandably seemed to upset all the employees,
who were discussing this in the waiting room in front of Alex. Even though he
didn’t need to use the restroom, Alex seemed concerned that other people
weren’t happy about the broken toilet.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While knocking on the door wasn’t the right thing to do,
Alex was so overwhelmed that he didn’t know what to do. By stopping to analyze
the situation, I could figure out the source of his behavior, redirect him, and
reassure him that everything would be fine. Moreover, I followed my motherly
instincts––which I know God directs––to go back to the therapy room not only to
support his therapist but also to support Alex. I had read the signs correctly.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next day, I had been grocery shopping and realized that
I had lost my credit card. After a quick search of my purse, our house, and my
car––aided by my perpetually calm and logical husband––I decided to go back to
the store to see if I had dropped it. After retracing my steps in the parking
lot and store, I went to the customer service desk to see if someone had found my
card. Disappointed that they did not have my card, I began planning to call the
credit card company to cancel my card. However, I decided that I would give the
parking lot one more search.<span style="mso-spacerun: yes;"> </span>As I
prayed for God to help me find my credit card, I decided to stop and stoop so
that I could get a better view. Suddenly, I saw a ray of sun shining on
something on the ground. Walking over, I realized that the sunshine was
reflecting off the metal chip of my credit card lying on the parking lot where
my car had been parked previously. I don’t know how God could have answered my
prayer any better or more dramatically––as if the heavens opened up and,
thankfully, showed me the way.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although I sometimes think that God is too busy to be
concerned with the minute details of my life, last week’s incidents reminded me
that He is always present. If God can give me signs about how to handle Alex or
how to find a lost credit card, surely I can trust that He will always show me
the paths I need to take to fulfill the life He has planned. All I need to do
is be still, pray for help, and wait for His guidance.</div>
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<div class="MsoNormal">
“Now then, stand still and see this great thing the Lord is
about to do before your eyes.” 1 Samuel 12:16</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-12798871522606957372019-02-17T09:20:00.000-06:002019-02-17T09:20:20.078-06:00Virtual Reality as Therapy for Autism<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwJ4ityb1Btz7PFJzjG6l5Pbmk14653jrmFT7ata8ENfdW9tKeMx8eXXspFH6EMENYgvp_k78lBQ58QgaK83rueDoEmsgUcrS0KhoP1QwcP2X-ljwaEz9wTov_1eQ5V5xqHugaesat0vo/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="168" data-original-width="300" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwJ4ityb1Btz7PFJzjG6l5Pbmk14653jrmFT7ata8ENfdW9tKeMx8eXXspFH6EMENYgvp_k78lBQ58QgaK83rueDoEmsgUcrS0KhoP1QwcP2X-ljwaEz9wTov_1eQ5V5xqHugaesat0vo/s200/images.jpg" width="200" /></a></div>
<div class="MsoNormal">
Researchers estimate approximately one fourth of children
who have autism struggle with phobias that can negatively impact their daily
lives. Thanks to modern technology, researchers have discovered a promising new
method of treating these extreme fears. Using virtual reality therapy,
researchers at Newcastle University in England in conjunction with Third Eye
NeuroTech have created interactive computer-generated scenarios to help
children with autism deal with their fears.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week, <i>Science Daily</i> published an online article
regarding this research that was also published on February 14, 2019, in the
<i>Journal of Autism and Developmental Disorders</i> and <i>Autism in Adulthood</i>. [To read
“Immersive virtual reality therapy shows lasting effect in treatment of phobias
in children with autism,” please click <a href="https://www.sciencedaily.com/releases/2019/02/190214191939.htm">here</a>.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For this therapy, known as the Blue Room treatment, children
and adults with autism were exposed to a 360-degree virtual environment related
to their specific fears. In real life, the people with autism would have
difficulty coping with these frightening scenes. As researcher Dr. Morag Maskey
notes, people with autism may have trouble imagining scenes, but the virtual
reality allows them to visualize these scenarios while they are provided
support to deal with their fears. Accompanied by a psychologist, the children
used an iPad to navigate and control completely the situations they were shown.
In addition, they did not have to wear goggles, unlike some forms of virtual
reality.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some of the phobias addressed in this treatment included
fears of the dark, walking into rooms, school, public transportation,
elevators, dolls, balloons, dogs, and wasps and bees. For the first study, 32
children with autism who were between 8 and 14 years old were divided equally
into two groups. The first group began treatment in the Blue Room immediately,
whereas the second group, acting as the control group, waited six months to
begin the Blue Room treatment. The children spent four sessions per week in the
Blue Room with a psychologist observing personalized scenarios related to their
individual phobias. Their parents could also observe these sessions through a
video link. After these treatments, the parents provided opportunities for
their children to face their fears in the real world.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two weeks after the virtual reality treatment, 25% of the
children in the first group were able to cope with their specific phobias. Six
months later, the positive effects of the therapy remained, as 38% showed
improvement, and only one child displayed an increase in the intensity of the
phobia. In the second group, 40% showed improvement two weeks after completing
the treatment, and 45% retained the benefits of the therapy six months later.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In a similar but smaller study, eight adults with autism
ranging in age from 18 to 57 participated in four twenty-minute sessions in the
Blue Room interacting with scenarios personalized for their specific phobias.
Six months later, five of the adults retained the benefits of this therapy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While the research team plans further studies to see how
long lasting the effects of this therapy are and to discover why some children
and adults do not respond to this treatment, the positive results are encouraging.
As Dr. Maskey states, “It is incredibly rewarding to see the effect it [the
Blue Room treatment method] can have for some, overcoming a situation which
just a week previously would have been so distressing.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Moreover, the leader of the study, Professor Jeremy Parr
from the Institute of Neuroscience at Newcastle University, emphasizes how life
changing the effects of this therapy could be. He states, “For many children
and their families, anxiety can rule their lives as they try to avoid the situations
which can trigger their child’s fears or phobia.” Furthermore, he adds that
this treatment “offers hope to families who have very few treatment options for
anxiety available to them.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since extreme fears can produce debilitating anxiety in
people with autism, potentially triggering aggressive panic attacks or causing
them to avoid situations they fear, addressing phobias in a supportive way
could have lifelong benefits. Fortunately, the researchers at Newcastle
University and the technology experts from Third Eye NeuroTech have discovered
that virtual reality may help children and adults with autism successfully
overcome phobias so that they may face everyday reality fearlessly.</div>
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<div class="MsoNormal">
“I prayed to the Lord, and He answered me. He freed me from
all my fears.” Psalm 34:4</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-36115816344941470402019-02-10T09:54:00.000-06:002019-02-10T09:54:19.748-06:00Social Skills for Social Media<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzPF-J-0YkpGEpCDI4vKKg_gUvnHApeVJ_8HTmv5KyGm0R0mx_k0-JTOCOU-gR7FkC9saibzh5lNlZf4irc1g9fiISktNQKBPguGU7SFoJmg67bTFBrzuoKpGiBpFYdD_fXOHZ_deE1oc/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="183" data-original-width="275" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzPF-J-0YkpGEpCDI4vKKg_gUvnHApeVJ_8HTmv5KyGm0R0mx_k0-JTOCOU-gR7FkC9saibzh5lNlZf4irc1g9fiISktNQKBPguGU7SFoJmg67bTFBrzuoKpGiBpFYdD_fXOHZ_deE1oc/s200/imgres.jpg" width="200" /></a></div>
<div class="MsoNormal">
While social media offers opportunities for parents of
special needs children to share information and support, this modern
convenience also can allow people to be hurt by intentionally or
unintentionally unkind comments. When parents of children with autism make rude
remarks, I wonder if they, like their children, may be on the autism spectrum
themselves and have difficulty with social skills. Others may be sleep-deprived
from taking care of children who stay awake all night, and others are likely understandably
upset by the stress of their circumstances. Nonetheless, in order to help each
other, we need to remember the power of words and strive to be kind and helpful
in what we say to others.</div>
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<br /></div>
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Over the years, I have participated in various online
support groups for parents of children with autism. A great deal of what I have
learned about autism and parenting children with special needs has come from
those wise and caring parents who were willing to share what they have learned
from their experiences. Remembering the thoughtfulness of those parents who
helped me through the early years of autism, I strive to offer the same support
and information I received to other parents of children with autism. However,
I’m sometimes surprised when parents of young children with autism deem
themselves experts and fail to value advice given by veteran parents.
Nonetheless, many of us still share our experiences, hoping to help others.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week, a parent shared serious concerns about a child
with members of an online support group and asked valid questions while seeking
information. Instead of offering sympathy or empathy to a parent in crisis,
some seemed more intent on critiquing parenting skills. Perhaps if they
couldn’t be nice, they should have been quiet instead. One person kept asking
nosy question after nosy question, more like an investigative reporter than a
supportive presence. In a sense, this interrogator seemed to be trying to gain
all the attention by asking irrelevant questions. At one point, I was waiting
for this person to ask the silly question from the movie <i>The Breakfast Club</i>:
“Can you describe the ruckus?” After all those questions, this person, who is
not a parent, had nothing helpful to offer, which confirmed my suspicion of simply
seeking attention.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Another issue that arose in this online conversation was the
topic of medications, which is a touchy subject in autism. Certainly, many
parents would prefer not to medicate their children. However, for some with
autism, medication proves essential to well-being and safety, addressing
depression, anxiety, and aggression. Some parents of younger children with
autism eschew the use of medication, yet they don’t realize the need until
their children get physically bigger and stronger, becoming more difficult to
handle when they have meltdowns. Those who tout only using behavioral therapy
need to remember that therapy takes time to have positive effects. I know this
because Alex has been in behavioral therapy for more than six years with a
fantastic therapist; the benefits take time to achieve. Moreover, some parents
are on long waiting lists for therapists and cannot get the help they need
immediately. Therapy may only be one piece of the puzzle.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Later, some caring parents brought compassion to the
discussion. Addressing the parent by name, offering not only good, specific
suggestions but also sharing their own experiences and empathy, these parents
provided what the parent in crisis was seeking: understanding and guidance. Perhaps
these parents reflected upon their own situations and remembered what they
wanted to know in similar situations and what had been helpful to them. By
being gracious instead of critical, they offered the support that should always
be present in a social media support group. Responding to their kindness, the
parent in crisis was equally gracious, thanking everyone for the advice and
support.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Last week, the Indiana Resource Center for Autism at Indiana
University posted one of their terrific social stories on their Facebook page.
Written by Kristi A. Jordan, these short stories intended for children with
autism provide helpful tips regarding how to interact with others. For
Valentine’s Day, the social story suggested, “It is nice to make a card for
every person, even if you do not like them. If you do not like someone,
remember that is a secret. You should think it, but don’t say it. Keep that
thought a secret.” Perhaps, all of us, not just children with autism, should
heed that advice. As Alex’s behavioral therapist reminds him in a useful
handout: “Before you say something, THINK: Is it true, helpful, informative,
necessary, and kind? If not, keep it to yourself.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Addressing the issue of how to deal with rude people on
social media, especially trolls, autism mom Cathy Jameson recently wrote an
outstanding essay for <i>Age of Autism</i>. [To read this essay, please click <a href="https://www.ageofautism.com/2019/02/running-into-vaccine-interference.html?fbclid=IwAR2e7NretUMHgis2k50mteiLl4og2pLaMIP8dn-UhM2SnKBJ4_QC0lfMMUI">here</a>.]
While she specifically mentions the heated debate regarding vaccines, she offers
good suggestions for handling any topics of contention. These provided good
advice for me at a time I was ready to straighten someone out on social media
for making comments I saw as hurtful and unfounded. Instead, I chose discretion
and opted not to engage in the debate. As Cathy Jameson advises: “Sometimes
it’s best to just walk away and let it go.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
However, she also offers helpful recommendations when
engaging in dialogue with others: “When you do say something, I’d suggest doing
so without emotion and name calling. When one resorts to name calling, the
chance to politely prove a point is immediately lost.” Moreover, she offers a
valuable tenet for dealing with others online that also applies in real life:
“Encourage people. It’s simple and what we prefer to do.” We may not always
agree on every topic, but we can be agreeable in how we treat others.</div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: Cambria;">"Do you have the gift of speaking? Then speak as though God Himself were speaking through you. Do you have the gift of helping others? Do it with all the strength and energy that God supplies. Then everything you do will bring glory to God through Jesus Christ. All glory and power to Him forever and ever! Amen." 1 Peter 4:11</span>Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-67366037981953945172019-02-03T09:25:00.001-06:002019-02-03T09:40:34.463-06:00Testing Testing<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCkN5dkIX56muBzLsziaOvZbmZOq6RLetNuoQbeE9IYaGCrDnnJWHtFHQU_cSeUKIQZ37sjdK_Z0YXuXNC_rJakAThUw5A1fvho7F8CtelffUFEKvO2yoqOwpUHHjvbeb_EpJWelDy3to/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCkN5dkIX56muBzLsziaOvZbmZOq6RLetNuoQbeE9IYaGCrDnnJWHtFHQU_cSeUKIQZ37sjdK_Z0YXuXNC_rJakAThUw5A1fvho7F8CtelffUFEKvO2yoqOwpUHHjvbeb_EpJWelDy3to/s200/imgres.jpg" width="200" /></a></div>
<div class="MsoNormal">
As a classroom teacher for more than thirty years, one of
the few aspects of my job I truly disliked was giving standardized tests to my
students. In fact, retiring from teaching brought relief that I would no longer have
to give these dreaded assessments. Knowing these evaluations were often worded
in ways that were confusing to my students or bored them with long reading
passages that failed to hold their interest, I questioned how accurately these
tests could measure their abilities. As I watched some students who lacked
motivation rush through the tests simply to get done and others struggle
through every minute trying to finish in time, I knew their scores would not
reflect what they really knew. Moreover, the general atmosphere of anxiety
prevalent during testing among students and staff was upsetting and
counterproductive. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My mistrust of standardized tests has only been heightened
as the parent of a child with autism. Having been present for most of Alex’s
evaluations, I know that they cannot measure accurately what he actually knows
and can do. Consequently, on traditional intelligence tests, he scores quite
poorly. Nonetheless, we place little value on the IQ values assigned to him,
knowing that Alex is smart in ways that the tests fail to measure.</div>
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<br /></div>
<div class="MsoNormal">
Recently, an enlightening article in <i>The Atlantic</i> addresses
the shortcomings of using traditional cognitive testing with people who have
autism and offers promising alternative methods. In “IQ Tests Are Biased
Against People With Autism,” published December 31, 2018, author Nicholette
Zeliadt notes, “…research has confirmed that some autistic people––especially
those who speak few or no words––have abilities that standard tests of
intelligence underestimate or overlook.” [To read this article, please click
<a href="https://www.theatlantic.com/health/archive/2018/12/why-many-people-autism-have-low-iq-scores/578974/">here</a>.] In addition, the subtitle of this article states, “For those with poor
verbal and motor control, traditional intelligence exams can be a faulty way to
measure real cognitive ability.”</div>
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<br /></div>
<div class="MsoNormal">
Recognizing problems of using traditional testing methods
with people who have autism, scientists have recently considered new ways to
test cognitive skills. Some have adapted existing tests, while others have
developed new tests. In both cases, the goal has been making tests easier to
complete for people with autism. Other researchers have employed technology
that measures eye movement and brain activity to evaluate skills. While using
technology may produce more accurate results, the expense and lack of
portability make these methods less accessible.</div>
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<br /></div>
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Although experts cannot reach a consensus about which tests
are most useful in evaluating people with autism, researchers note that none of
the most commonly used assessments qualify as “a particularly good fit.” In
addition, interpreting scores often proves problematic when assessing people
who have autism. Many issues commonly associated with autism make testing
difficult, such as anxiety, social-communication challenges, restricted
interests, and lack of motivation to do boring tasks. Furthermore, poor fine
motor control makes pointing, which is required in some tests, difficult, and
tests lasting nearly an hour are too challenging for those with attention
issues. As Beth Slomine, neuropsychologist at Kennedy Krieger Institute in
Baltimore, Maryland, candidly explains, “…the tasks we have that measure
cognitive ability are often boring, [and] the tasks don’t always measure what
we think they’re measuring.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At Boston University’s Center for Autism Research Excellence
in Massachusetts, researchers have adapted testing for children with autism. To
make the process less stressful, the child does not interact with the
evaluator. Instead, two pictures are shown side by side on a screen as a
recording instructs them to “Look!” Additionally, to keep them interested,
pictures of beloved character Thomas the Tank Engine and videos of rockets
launching are shown. According to the director of the Center, Helen
Tager-Flusberg, “We did that to keep them engaged, to keep them looking––it
doesn’t feel like a test.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Using technology to observe eye tracking, researchers at
Bar-Ilan University in Ramat-Gan, Israel, monitor involuntary eye movements as
a method of testing people with autism. Under the direction of Yoram Bonneh,
associate professor of vision science and optometry, the researchers study
“tiny flicks of the eye as it jumps toward something of interest” in people
with autism to assess word comprehension. After words are spoken or shown on a
screen, two pictures are displayed side by side, with only one matching the
given word. Eye movement toward the picture demonstrates word comprehension.
This research indicates that adults with nonverbal autism perform as well in
this testing activity as typical adults do.</div>
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<br /></div>
<div class="MsoNormal">
In addition, these researchers show multiple choice
questions and answers on a screen without reading them aloud. When the person’s
eyes stop on a correct answer, the researchers use this behavior as a measure
of cognitive ability. After testing a group of young men with autism who had
minimal verbal skills and were thought to be illiterate, the researchers
discovered through the testing that these men could actually read.
Consequently, this testing method not only proved the young men had the ability
to read and understand written text but also demonstrated that their skills had
previously been underestimated.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At Rutgers University in Newark, New Jersey, scientists have
been using EEGs to test minimally verbal children with autism. As the children
watch images immediately followed by hearing a word that may or may not match
the picture displayed, researchers use the EEG technology to look for brain
activity to indicate the recognition of the image and word. Through this form
of testing, the research suggests that the children don’t always connect the
words and pictures. Another theory is that children with autism may use other
parts of their brains to process what they have seen and heard than typical
children do. Nonetheless, using brain wave technology allows scientists to
glimpse how the minds work in children with autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Clearly, research shows the importance of creativity when
assessing people who have autism, considering their special needs and the
differences in the ways their brains process information. As Charles A. Nelson,
professor of pediatrics at Harvard University and Boston Children’s Hospital
notes, “These kids we think are very low functioning, very nonverbal, may have
more going on upstairs then we’re giving them credit for.” Indeed, using
traditional methods to question those with autism may produce questionable
results. Instead, parents, educators, and professionals should seek better ways
to assess the skills of people with autism, and more importantly, they must
never underestimate the abilities of those whose brains work in mysterious––and
perhaps even superior––ways.</div>
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<div class="MsoNormal">
“But there is a spirit within people, the breath of the
Almighty within them, that makes them intelligent.” Job 32:8</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-81074337097979325882019-01-27T08:34:00.000-06:002019-01-27T08:34:54.752-06:00Book Review: Common Man, Extraordinary Call<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM-wyYFDTGc0TkET66C5dP3tUiRsPWfZo8MmRBazk7FrYgVbbzIg6Kch4RTOKiegBgUCzrq3uTuj_MX2DR30qLt-8SawkJTH5wky6FNE3gSoXgbFM_KMUaGXolwi9C91ssinVjCjawtN0/s1600/imgres.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="279" data-original-width="181" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM-wyYFDTGc0TkET66C5dP3tUiRsPWfZo8MmRBazk7FrYgVbbzIg6Kch4RTOKiegBgUCzrq3uTuj_MX2DR30qLt-8SawkJTH5wky6FNE3gSoXgbFM_KMUaGXolwi9C91ssinVjCjawtN0/s200/imgres.jpg" width="129" /></a></div>
<div class="MsoNormal">
After a child is diagnosed with special needs, many parents
seek advice from others in similar circumstances who can share the wisdom of
their experiences. In <i>Common Man, Extraordinary Call</i>, released last week and
available from Amazon and Barnes and Noble, special needs dad Jeff Davidson
offers an honest and clearly written guide for fathers of special needs
children. As the father of an adult son, Jon Alex, who was diagnosed with
cerebral palsy, intellectual disability, and nonverbal autism, he and his wife,
Becky, generously share what they have learned. [Special thanks to Becky
Davidson and Kregel Publications for providing me an advance complimentary digital
copy of this book.]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although he never served in the military, the author
explains that he greatly respects those who have served our country.
Consequently, he uses military terminology throughout this guide for fathers
who have unwittingly been drafted into the troops of special needs dads. In
each chapter, he offers practical ways to deal with issues through a section
titled “Mission Critical,” in which he provides checklists detailing what needs
to be done.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As he provides leadership to the dads on the front lines,
Jeff Davidson explains the tactics in a casual, conversational tone that is reassuring.
Sharing candidly what he has learned along the way, he reveals a keen sense of audience,
engaging the reader through direct address: “You” and “Dad.” Moreover, each
chapter ends with "A Story from the Front Line,” in which special needs dads share
their own stories, or an “Encouragement from the Homefront,” a letter from
Jeff’s wife, Becky, offering support to special needs dads. In addition, the
book also provides a helpful study guide at the end, reviewing important points
in the book, as well as thought-provoking discussion questions for further
reflection.</div>
<div class="MsoNormal">
<br /></div>
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One of the issues the author tackles in the first chapter is
the problem of denial. In fact, he admits that he refused to say that his son
had autism until three years after his son’s diagnosis. However, he notes:
“When I finally accepted the truth, our world shifted, and life became easier.”
Having struggled with denial himself, he strongly urges special needs fathers
to ask God for help in accepting their circumstances.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In addition to asking God for help, the author also advises
asking others for assistance when needed. Enumerating all the various roles
fathers must play in providing for their families’ physical, emotional,
spiritual, and financial needs, he understands that special needs dads may feel
overwhelmed. While fathers may be reluctant to impose on others for help, he
explains, “If we forgo their help, we are robbing them of the opportunity to be
a blessing.”</div>
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<br /></div>
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Moreover, the author encourages special needs parents not to
isolate themselves from others. While raising a child with special needs fills
life with challenges, he urges, “We have to be willing to let people into our
lives. They need to know what your reality is like.” Although allowing others
to see what life with a special needs child is really like may be
uncomfortable, he assures the benefits are worth the efforts. Ultimately,
others can gain understanding as well as love and respect for people with
special needs by interacting with families who are raising special needs
children.</div>
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<br /></div>
<div class="MsoNormal">
Perhaps one of the most powerful chapters of the book,
Chapter 8, “Emotional Land Mines,” candidly describes the difficulties special
needs parents must consciously avoid. Specifically, he warns against envying
other people’s lives and advises special needs parents to stop comparing their
lives to those of others. Additionally, he describes the dangers of fear, self-pity
that can lead to despair, futile attempts to assign blame for the child’s
disability, and the sense of being cheated. Instead, he suggests, “…the power
over every circumstance depends upon my choice of perspective.” Similarly, he
addresses the bitterness and grief associated with missed milestones,
beautifully noting the importance of a positive perspective: “Joy can be found
in the simple successes, and contentment in the seemingly insignificant
moments.” Furthermore, in dealing with the death of dreams that parents of
special needs children face, he admonishes abandoning our expectations because
“God has plans and dreams for our children, too.”</div>
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<div class="MsoNormal">
Yet another key point Jeff Davidson raises is the importance
of teaching our special needs children how to overcome fear. He stresses that
parents must reassure their children that they can confidently trust God as a
source of wisdom, protection, and provision. As an additional reassurance to
parents, he reminds us, “God will always be there for your children, even if
you can’t be.”<br />
<br /></div>
<div class="MsoNormal">
Sadly, Jeff Davidson passed away unexpectedly and went to be
with the Lord in May 2017. In the preface of <i>Common Man, Extraordinary Call</i>, his
wife, Becky, explains Jeff’s desire to help special needs families, especially
fathers of children with special needs. Moreover, she notes that writing and
publishing this book fulfills his dream “to speak directly to the men he knew
were so in need of hope.” Indeed, Jeff Davidson’s words of faith and love will
continue to inspire others while sharing the hope he had found in the Lord. <br />
<br /></div>
<div class="MsoNormal">
<span style="font-family: cambria; font-size: 12pt;">“The master said, ‘Well
done, my good and faithful servant. You have been faithful in handling this
small amount, so now I will give you many more responsibilities. Let’s
celebrate together.’” Matthew 25:23</span></div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0tag:blogger.com,1999:blog-8937833385707548980.post-78062435113287183632019-01-20T09:48:00.000-06:002019-01-20T09:48:36.410-06:00Small Setbacks<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTM22ZNwYCUMXt8enD-Wg9e_7l024A8JKVW-MoJa3j6PlhaKeoPHHRcAZI1VWQxbce0w2C3mM-jZYFcO55XhT-YqAq8bKYhIKQ-ffIfl1ytgrA9z-jkZ6s_7IP6RNWAtl47hxHU-_tOFs/s1600/images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="168" data-original-width="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTM22ZNwYCUMXt8enD-Wg9e_7l024A8JKVW-MoJa3j6PlhaKeoPHHRcAZI1VWQxbce0w2C3mM-jZYFcO55XhT-YqAq8bKYhIKQ-ffIfl1ytgrA9z-jkZ6s_7IP6RNWAtl47hxHU-_tOFs/s1600/images.jpg" /></a></div>
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A few weeks ago, when we took Alex for his annual physical,
his doctor proclaimed him to be in excellent health. Although we suspected this
to be true, for Alex had not needed to go to the doctor since his last annual
exam a year ago, we were delighted to get such a good report. Nonetheless, the
doctor did have one issue for Alex (and us) to work on: eating more calories
per day and trying to gain about fifteen pounds. While many of us would be
ecstatic to have our doctors give us that advice, we knew this could be
challenging for Alex, whose metabolism and level of activity keep him naturally
thin. Along with the food aversion issues he’s struggled with for more than a
year and a half that caused him to lose weight, gaining weight for Alex is as
difficult as losing weight is for most people.</div>
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Nonetheless, we took the doctor’s suggestion to heart,
trying to find ways to get Alex to eat more and consume more calories.
Fortunately, Alex made a real breakthrough around Christmas, suddenly eating a
greater variety and quantity of foods, returning to his past habits of eating
healthy, instead of limiting himself to cold and smooth foods. He even began
asking for old favorites, such as meatloaf and shrimp, and happily devoured
them. Thanking God for this Christmas miracle, we thought Alex had made a big
breakthrough in overcoming the food aversion that not only made him not want
to eat certain foods but also triggered panic attacks at the kitchen table. </div>
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Because his doctor understands Alex’s issues well, he
recommended adding nutritional supplements, namely Ensure or Carnation
Breakfast Essentials, to Alex’s daily diet. Although both of these products
contain milk, to which Alex has a dietary sensitivity, I was willing to take a
chance that their benefits outweighed the potential concerns about giving him
milk products in these supplements. After I added Carnation Breakfast
Essentials powder in Classic French Vanilla flavor to Alex’s nondairy shakes
made of Rice Dream ice “cream” and coconut milk beverage and strawberries, he
seemed to like the taste and was willing to drink three of these shakes every
day. I thought we had found a great way to get some calories into him easily.</div>
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However, after a few days of these shakes, Alex began
complaining of headaches. While I suspected the milk in the nutritional
supplements might have been the culprit, I thought a few more days wouldn’t
hurt. I was wrong. The more days Alex had the powdered milk supplements, the
more irritable he became. Then he started complaining of stomachaches. Although
I was fairly certain the source of his pain and grouchiness was milk in the
doctor-recommended nutritional supplement, I knew we had to test this theory by
eliminating it from his strawberry shakes. Once I removed the milk product from
his shakes, Alex stopped complaining of headaches and stomachaches, and he
stopped being cranky, which was probably a result of not feeling well. Consequently,
we had to abandon the doctor’s simple plan for adding calories and find other
ways to help Alex gain weight.</div>
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About the same time, and probably not coincidentally, Alex’s
wonderful progress in eating a variety of foods was followed by a regression.
Unfortunately, he wanted to return to the cold and smooth diet, favoring
applesauce, dairy-free yogurt, and non-dairy pudding. Between the bad reaction
to the nutritional supplements and the return of food aversion, I was terribly
frustrated by these setbacks, even though they were relatively small. Knowing
that Alex has an appointment in a few weeks with his doctor to monitor his
weight, I am feeling pressure to make sure he puts on some pounds to show that
I’m putting forth effort. </div>
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Feeling a bit defeated and disappointed, I knew what I had
to do. Reminding myself of Philippians 4:13, “I can do all things through
Christ who strengthens me,” I resumed my usual determination and began
researching other ways. Knowing that Alex likes pudding, I found a great and
simple-to-make recipe for peanut butter pudding that can easily be adapted with
coconut milk. Full of calories and protein, it offers Alex what he needs. In
addition, the recipe came from one of his favorite chefs, the late “Mr. Food,”
whom Alex loves to imitate by repeating his motto in a deep voice: “Ooh, it’s
so good!” I knew that Alex would be willing to try this new food, especially,
if we both said Mr. Food’s motto before he ate it. Fortunately, the peanut
butter pudding turned out delicious, and Alex loves it because it is, indeed,
“Ooh, so good!”</div>
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In addition, I found a different nutritional supplement to
try that uses plant proteins instead of milk proteins. While I’m not sure
whether Alex will like the taste, we’ll give it a try next week. In the
meantime, I keep praying that he’ll resume his healthy and varied diet, as we
witnessed the week after Christmas. However, I also know that I need to remain
upbeat and calm about Alex’s eating habits so that he doesn’t pick up on my
anxiety and add it to his own. If nothing else, I am tenacious about making
sure Alex is healthy and happy, and I won’t allow these small setbacks to deter
that ultimate goal. Most importantly, I know that God has a plan for Alex, and
as the Great Healer, He will make certain that Alex gets everything he needs.</div>
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“But as for you, be strong and do not give up, for your work
will be rewarded.” 2 Chronicles 15:7</div>
Pam Byrnehttp://www.blogger.com/profile/11693728509115670248noreply@blogger.com0