Sunday, August 30, 2015

Risperidone and Autism

 
Dealing with aggression in autism, especially in children who have reached adult size, proves one of the most difficult challenges for parents of these children. Currently, the FDA has only approved two drugs for irritability in autism—behavior that includes aggression, temper tantrums, and self injury––risperidone and aripiprazol, whose brand names are Risperdal and Abilify. While medication can help address many of the behaviors associated with autism, parents and doctors must also weigh the potential negative side effects against the potential benefits drug companies tout.

In her April 28, 2014, article “Risperidone use in children carries heavy risks” published online by Simons Foundation Autism Research Initiative, Emily Anthes clearly addresses the risks and benefits of the drug risperidone, which is commonly prescribed to children with autism who display aggressive behaviors. Not only is risperidone the first drug the FDA approved for use in children with autism, but it is also the most widely used drug for children with autism. Originally, risperidone was used to treat schizophrenia, and the FDA approved this use in 1993. In 2006, the FDA also approved risperidone for the treatment of irritability in children with autism ages 5-16.

In 2002, clinical trials of children with autism aged 5-17 taking risperidone showed 57% reduction in tantrums, self-injurious behaviors, and aggression. Of those who responded favorably to the medication, 70% continued to show improvements after taking it for six months. However, not all children show this positive response to risperidone, and the negative behaviors return when the medication is discontinued. Moreover, the drug does not improve many behaviors associated with autism.

Additionally, risperidone has been associated with negative side effects, including drowsiness, significant weight gain, and hormonal changes. Specifically, children taking risperidone gain an average of six pounds within eight weeks of taking the drug. This weight gain carries even more concern in that it may not be temporary. Jeremy Veenstra-VanderWeele, the medical director of the Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt University in Nashville, Tennessee, notes, “You may change the body shape or body fat distribution in a child for the rest of their life.” This weight gain may also lead to other more serious metabolic issues.

A less common side effect, tardive dyskinesia, which manifests as involuntary repetitive movements, such as facial grimaces, tongue thrusting, and finger movements, has also been associated with risperidone. If the drug is stopped early enough, these movements may cease. However, even if the drug causing the movement is discontinued, the tardive dyskinesia may become worse and may be permanent.

Along with problems associated with weight gain, risperidone can cause hormonal issues in children taking the drug because it increases prolactin levels. Secreted by the pituitary gland, prolactin, if increased, can cause sexual dysfunction, lactation in girls, and gynecomastia, or swelling of breast tissue, in males. In fact, in Feburary 2015, a Philadelphia jury awarded a twenty-year-old man with autism $2.5 million after he developed size 46DD breasts as a side effect from taking risperidone from 2002-2006.

By the end of 2013, 500 plaintiffs had filed personal injury lawsuits against Johnson and Johnson, the parent company of Janssen Pharmaceuticals, who produces risperidone. In November of 2013, Johnson and Johnson agreed to pay $2.2 billion to resolve claims that they had improperly marketed Risperdal and two other drugs as having unproven benefits for elderly patients with dementia and children with autism.

In her article “Pharma company may have downplayed side effects of autism drug” published online August 20, 2015, by the Simons Foundation Autism Research Initiative, Jessica Wright addresses these serious side effects associated with risperidone. In a lawsuit filed against Janssen Pharmaceuticals, evidence has been presented that a 2003 study omitted data regarding the side effects of risperidone. Specifically, the study concluded that there was no link between the increased prolactin in boys and the development of gynecomastia.

This 2003 study of 700 children taking risperidone used data to show that prolactin increased the first two months on risperidone but returned to normal levels after five months on the drug. However, an earlier manuscript of this research has been found that includes two data tables that were not included in the published version of the research. This conveniently excluded data that shows a correlation between increased prolactin and side effects was never provided to the FDA for obvious reasons. This failure to disclose known serious side effects not only suggests deceit on the part of the drug company, but revealing this information also makes them open to scrutiny and lawsuits by those damaged by the drug.

On a personal level, when Alex first exhibited aggressive behaviors in his teens, two doctors recommended that he take risperidone. However, I had done enough research to know the potential side effects and decided that the benefits were not worth the risks. For one thing, he was difficult enough to manage, and adding more weight to him would make him even harder to handle during a meltdown. Moreover, my mother’s instinct made me very leery about the issue of tardive dyskinesia and the potential permanent damage the drug could do in that respect. Therefore, I tore up the prescription one doctor gave us for risperidone and politely asked for a different medication from the other doctor, who understood my concerns and complied with my request.

When Alex was hospitalized for extreme anxiety and aggression, he was given one dose of risperidone, probably because it is the drug of choice in treating aggression in autism. However, one of the nurses told me that after just that one dose, he began to exhibit concerning side effects that appeared to be tardive dyskinesia, so they stopped the drug immediately. Thankfully, he was under the observation of trained medical professionals who recognized this serious side effect and knew that he should never take risperidone again. My mother’s instinct, which I believe is God guiding me, was correct about risperidone’s potential negative effect upon Alex, and fortunately, he did not suffer any obvious permanent damage from that single dose.

Certainly, medications can effectively treat symptoms associated with autism. For our family, the right medications have helped Alex tremendously and have significantly improved our lives as they have eased Alex’s anxiety and aggression. However, parents must do their own research on medications and never trust doctors and drug companies blindly. Doctors may not know all the side effects of psychiatric medications, and drug companies may omit crucial data to increase their profits. Moreover, more research needs to be done regarding developing medications that may better address negative behaviors in autism and have fewer serious side effects. As parents we must help our children cope effectively with a world that overwhelms them, and we must find methods that, indeed, follow the guiding principle: “First, do no harm.”

“Is there no medicine in Gilead? Is there no physician there? Why is there no healing for the wounds of my people?” Jeremiah 8:22

Sunday, August 23, 2015

Behavior as Communication in Autism

 
Last Sunday, Salon posted a fascinating online article about autism entitled “We have autism all wrong: The radical new approach we need to understand and treat it.” [To read this article, please click here.] Written by Dr. Barry Prizant, a speech and language pathologist who has extensive experience in working with people with autism, this article proposes that rather than stopping behaviors commonly found in autism, the reasons behind these behaviors should be addressed instead.

Dr. Prizant notes that autism is usually diagnosed based upon observation of various “autistic behaviors,” such as hand flapping, echolalia, and rocking, but no one bothers to ask why the child is engaging in these behaviors. As he points out, the logic becomes circular: “Why does Rachel flap her hands? Because she has autism. Why has she been diagnosed with autism? Because she flaps.” Similarly, I once asked Alex’s behavioral therapist why he, like other adults with autism I have observed, often holds his hands awkwardly bent at the wrist and close to his chest. She told me that it’s just a common behavior seen in adults with autism. I suspect that he does this because it makes him feel secure, a standing fetal position that instinctively puts his hands where he can protect his chest and head.

Additionally, Dr. Prizant states, “Instead of seeking to understand the child’s perspective and experience, they [caregivers] simply try to manage the behavior.” He further asserts, “This way of understanding and supporting people with autism is sorely lacking…It neglects the importance of listening, paying close attention to what the person is trying to tell us, whether through speech or patterns of behavior.” Or, as behavioral therapists tell parents of children with autism: behavior is communication.

Later in the article, Dr. Prizant goes on to explain that because of differences in their neurological systems, people with autism must deal with dysregulation challenges. He notes that people with autism “experience more feelings of discomfort, anxiety, and confusion than others” and “have more difficulty learning how to cope with these feelings and challenges.” These challenges occur because of communication issues and difficulties in dealing with change. Sensory and medical issues also contribute to the dysregulation problems people with autism face.

As Dr. Prizant notes, all people face stressful situations in life that make us feel dysregulated, but people with autism are more sensitive to these circumstances and often do not possess the skills needed to cope with these issues. For example, he describes children with autism who cover their ears and run screaming when they hear a loud noise, overwhelmed by the sensory overload. Other times, the reason behind the behavior may be less obvious, but he urges parents and therapists to try to find the motivation behind the child’s behavior. He states: “In most cases, the child can’t explain the behavior in words, so it’s up to those close to him to sort through the clues.”

With Alex, we have learned to help him express his emotions so that we can better help him cope. For example, his hands may shake for a variety of reasons. Consequently, we will ask him if he’s cold, nervous, excited, or just shaky. He has become very good at explaining the reason behind his trembling hands, and we can help him once we know the reason by getting him a blanket, reassuring him, sharing his joy, or reminding him that his medications just make his hands a little jittery at times. We have also discovered that when he grabs our arms, this is not an act of aggression, but a cry for help instead. He needs something but is so upset that he cannot express it verbally. Rather than addressing the behavior, we have learned to acknowledge that he’s upset and try to get to the bottom of whatever has caused him to reach out to us for help. Once we know the source of his upset, we can reassure him that we will help him cope.

Last week, one of my students who has autism approached me and suddenly moved her hand toward my head. Having seen Alex do similar motions, I took her hand gently in mine, moved it down into a friendly handshake, and told her that I was happy to see her. She smiled and told me that my necklace was pretty, which was probably the reason why she had impulsively moved her hand toward me; she wanted to touch my necklace because she liked it. Instead of reprimanding her for violating personal space, I was able to help make her behavior a socially acceptable one—a grab for an intriguing object that could have been perceived as threatening instead became a respectful handshake. My experience with Alex had taught me how to respond in a way that was understanding of her needs.

To conclude his article, Dr. Prizant explains, “Most of the behaviors commonly labeled ‘autistic behaviors’ aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally. In other words, in many cases they’re strengths.” Specifically, some behaviors not only signal that they are overwhelmed, but these actions also help to calm them by helping them gain control of the situation that feels out of control. Furthermore, he points out that all people have routines and methods to calm themselves in stressful situations, but children with autism may be discouraged from doing these behaviors, such as rocking or flapping. For example, I hum when I’m nervous, but I know that it’s not socially acceptable to do this in certain situations. Alex, on the other hand, will ask a question repeatedly when he is nervous, not caring how others perceive him. Rather than telling him to quit asking the question, we repeat his question so that he knows we have heard his concern, and we give him the opportunity to answer his own question. Realizing that he already knows the answer, Alex becomes reassured that everything is all right and stops repeating the question.

As an autism mom, I thoroughly appreciate Dr. Prizant’s insights into why people with autism behave the way they do. Because their nervous systems are especially sensitive to sensory issues and anxiety and because they often lack the verbal skills needed to express their feelings, they behave in untypical ways to communicate their emotions. Those who deal with people who have autism need to remember that they are doing the best they can to cope in a world that overwhelms them. Moreover, we need to figure out the reasons for their behavior so that we can help them cope and communicate their emotions. While we may not always understand their behavior, we certainly need to be understanding of them, showing compassion for their struggles and reassuring them that we truly care.

“Reflect on what I am saying, for the Lord will give you insight into all this.” II Timothy 2:7

Sunday, August 16, 2015

The Autism Epidemic

 
This week a provocative article regarding autism appeared online and has caused some controversy. In his article “Is There Really an ‘Autism Epidemic’?” writer Cody Fenwick challenges the assertion that autism is increasing at a staggering rate. Although he mentions the statistics usually cited to show that cases of autism have significantly increased in recent years, he proposes that autism is no more prevalent than it ever was. Instead, he believes that different criteria are being used to describe autism, and better diagnosis of autism along with more available resources have led to more people “experiencing ASD symptoms.”

To support his argument, he mentions research aligning with his belief that autism rates have not increased in recent years. Specifically, he cites a single study in Australia regarding the “global burden” of autism spectrum disorders that determined there was no change in American autism rates from 1990-2010 or around the world, for that matter. In reference to increased rates of autism diagnosis, he summarizes a California study that found higher rates of autism diagnosis in regions that offered diagnostic resources. This same study noted that children who moved to regions that offered better diagnostic resources had better chances of receiving a diagnosis of autism. Obviously, this makes sense: parents take their children to experts when they have symptoms that require evaluation and diagnosis. Moreover, some parents move their families closer to these autism experts so that their children can receive the best possible care. This scenario would seem to refute, rather than support, the author’s point that autism is not an epidemic.

In addition, he refers to “significant research”––but never cites the sources––regarding the increased diagnosis of autism. According to this nebulous body of study, the reason why the occurrence of autism seems to be increasing is because people have more access to mental health services, more incentives for having an autism diagnosis, and greater knowledge of autism. Fenwick asserts: “…high rates of ASD are due to more available resources, rather than an increase in people experiencing ASD symptoms.”

If Fenwick had talked to any autism parents, they could tell him that none of these reasons are true. Parents often wait months or even years to get services for their children with autism because there are simply not enough available resources, primarily because the number of children with autism has increased more rapidly than the availability of professionals who work with them. As for the “incentives” of having an autism diagnosis, this is simply ludicrous. Autism parents know that a diagnosis of autism often means discrimination and having to fight insurance companies to provide needed services. Moreover, if a greater knowledge of autism truly exists, there would be no need for autism awareness.

Another argument that Fenwick makes is that autism is simply a reclassification of the diagnosis of intellectual disability. He supports this position by noting that while the diagnosis of autism has increased (yet there is no autism epidemic, according to him), the diagnosis of intellectual disability has decreased. He suggests that many people who would have been labeled as having an intellectual disability are now classified as having autism, noting that the autism spectrum is diverse and has wide criteria for diagnosis. As anyone who studies statistics knows, “Correlation does not imply causation,” and the decline in those with intellectual disabilities has a more likely cause. According to recent statistics, an estimated 92% of pregnancies in which Down syndrome is diagnosed are terminated in abortion. Tragically, these children who would have been diagnosed as having intellectual disability are being eliminated from society before they can be born, and this is more likely the reason for fewer children receiving the intellectual disability diagnosis.

On the other end of the spectrum, he states that many people with high functioning autism probably went undiagnosed in the past. However, my more than thirty years of experience as a teacher tells me this is not true. Autism, even the high functioning version, is not something that could be ignored. The hallmarks of impaired language and social skills and behavior could not simply be swept under the rug. The reason more children are being diagnosed with autism is because autism rates are increasing; it’s that simple.

While Fenwick attempts to make his point that increased diagnosis of ASD does not mean more people have autism than before, he explains that the term “autism epidemic” should be avoided because classifying autism as a disease or plague is “hurtful and demeaning” to people with autism who view the condition as integral to their identity. Whether autism is a disorder, a disability, or a disease, it clearly impacts people’s lives in negative ways, impairing their language and social skills. The term “autism epidemic” is not intended to diminish those who have autism; instead, using this term may help bring attention to the difficulties they face on a daily basis.

Although the author concludes his argument that autism is not an epidemic by stating the “need to avoid making unwarranted claims to gain attention for our cause,” he never explains why he personally views autism as “our cause.” However, he also points out the need for better mental health services and research and even concedes that the current research on autism rates is “not decisive,” noting that there could be an actual increase in cases of ASD.

If, indeed, autism rates are increasing—and I believe they are, based upon my research and experience––attention is needed so that more research is done regarding how to help people with autism to allow them to get better support and services than are currently available. To quibble over the semantics of the term “epidemic” wastes more time that could be spent finding ways to help people with autism. For the record, however, I do believe there is an autism epidemic that if not addressed immediately will overwhelm our medical care, education system, and economic resources. With not enough support systems in place to handle this epidemic, those who need help will suffer. Our children with autism deserve much better.

“For He will rescue you from every trap and protect you from deadly disease.” Psalm 91:3

Sunday, August 9, 2015

Autism Mom Guilt Bingo

 
This week, my sister-in-law posted a funny graphic on Facebook about mom guilt. Entitled “Mom Guilt Bingo,” it first appeared about a year ago on the blog Sweet T Makes Three. What makes this bingo game so amusing is that it is so true: we moms frequently second guess ourselves when raising our children and feel bad about our mistakes. Of course, some of the items included in the Mom Guilt Bingo are tongue-in-cheek, such as “High Fructose Corn Syrup in the House” and “Birthday Party Wasn’t Pinterest Worthy.” However, others squarely address those issues where we feel we’re not doing enough as our children’s mothers.

This week, I felt my own pangs of mom guilt as I eagerly prepared to start teaching another school year later this month. As I bought school supplies, revised syllabi for my classes, photocopied handouts, and decorated my classroom in anticipation of a new group of students, I felt that yearly pang of guilt about actually enjoying a job that takes me away from Alex every weekday morning. Mind you, he’s twenty-three years old, supervised by his beloved father while I’m away, and sleeping some of the time I’m at work, but I still worry that somehow my absence is detrimental to him.

While probably all mothers feel guilt from time to time, autism moms feel guilt that typical moms do not. We wonder whether we have done something wrong to cause our children’s autism—probably going back to the now debunked and completely ridiculous “refrigerator mother” theory that our supposed coldness impaired our children’s social skills. Moreover, we worry whether we are doing enough to make our children better. With those perceived shortcomings in mind, I offer my version of Autism Mom Guilt Bingo.

B is for Borrowed—Here are the squares I borrowed from the original Mom Guilt Bingo that also apply to autism moms:

Yelled

Incomplete Baby Book

Work Outside the Home

Hiding in the Bathroom

Used TV as a Babysitter



I is for Imagined causes of child’s autism—what we may have done during their early development, according to “research”:

Got sick during third trimester

Wore nail polish while pregnant

Passed along autoimmune tendencies

Too many ultrasounds during pregnancy

C-section


N is for Need to do this to keep child happy and mom sane:

Allowed child to rewind Disney videos over and over

Put child in GoodNights in the daytime when too big for diapers and pull-ups

Told child white lies

Let child slam doors and turn on and off lights in nightly routine

Engaged in routine of saying “Bye-bye” repeatedly during credits of television shows


G is for Gosh, I’m not proud of this:

Wanted to poke out eyes of people who stare at my kid

Jealous of parents who have typical kids

Made Rain Man jokes

Considered making T shirts that read: “I’m Autistic, What’s Your Excuse?”

Blamed, begged, and bargained with God



O is for Overloaded with toxins unknowingly:

Cooked in aluminum and nonstick pans

Built deck with (arsenic) treated lumber

Followed (thimerosal-containing) vaccine schedule faithfully

Gave Tylenol after shots

Child chewed on his flame-retardant pajamas



No one said that motherhood would be an easy job, and autism adds a whole new dimension of struggles to raising a child. Being human, we moms make mistakes, often unintentionally, and we pray that our shortcomings will not harm our children. Thankfully, we can rely upon God’s forgiveness when we fall short, and our kids are more resilient than we think they are. I’m especially blessed that Alex never holds a grudge; when I tell him I’m sorry, he readily accepts my apology and moves forward. (Occasionally when he’s OCD, he will remind me, “Mommy made a mistake in 1996,” but usually he doesn’t hold too much against me.) Without a doubt, I am the one who holds me accountable for my mistakes, and guilt ensues. However, I need to remember that if God and Alex can forgive me, then I need to forgive myself and let go of the guilt. Oh, and one of these days, I will finish Alex’s baby book, maybe someday after I retire from my job.

“You forgave the guilt of Your people––yes, You covered all their sins.” Psalm 85:2


Sunday, August 2, 2015

Request List

 
Because Alex has made significant progress in the past several months, Ed and I asked him two months ago to make a list of the things he’d like to do over the summer, confident that he would be able to behave himself well enough to do these requested activities. Knowing Alex as well as we do, we were also certain that his list would be reasonable and, therefore, manageable. Basically, he made the following list:



1. Go to different restaurants.
2. Go to the county fair.
3. Go to concerts in the park.
4. Go to the farmers’ market.
5. Go to Zao Island (a local family arcade and miniature golf course).
6. Go to Dairy Queen.
7. Go to the movies.
8. Play in the sprinkler.

With two weeks left before Ed and I return to our teaching jobs, marking the end of our summer, we have been able to fulfill all of the requests on Alex’s list. This summer, he has enjoyed dining at Round the Clock family restaurant (in Valparaiso and Chesterton), Culver’s hamburger place with gluten-free buns, Panera Bread for salads (inside and out on their patio), Fazoli’s Italian restaurant, Schoop’s fifties-style diner (breakfast and dinner), Suzy’s CafĂ©, The Port fifties-style drive-in, Tao Chen’s Chinese restaurant, Bob Evans family restaurant, and Kelsey’s Steak House. Despite the limitations of his gluten-free and dairy-free diet, we have found items on the menu that he can eat, and he happily devours whatever is put in front of him. Most importantly, he demonstrates that he has learned the manners we have been teaching him, thanking the people who wait on him and being pleasant and patient.

On Monday evening, a perfect summer night with comfortable temperatures, we took him to our county fair, something he looks forward to visiting every year. Along with visiting the horse and cattle barns, we looked at the 4-H exhibits, enjoyed an excellent concert by country musician John Berry, and walked around the carnival midway. Whenever we go places, Alex wants to know what there will be to eat and drink, but most food fare at the fair doesn’t fit within his dietary limitations. However, he did enjoy a root beer float minus the float and strawberry lemonade. Also, he wanted to continue his annual fair tradition by playing the duck pond game, where he chose a red sock monkey stuffed animal, whom he named Alan (after his favorite country singer Alan Jackson) for his prize. Although he told us he had “tired feet,” by the end of the evening, he rated his visit to the fair “one hundred percent.”

On Thursday evening, we took him to a concert in our downtown park, the last one of the summer series, where we had already seen the local community band, a country band, and a rhythm and blues group. The last concert was a pop group who were not Ed’s taste in music, but Alex and I found them entertaining. Of course, Alex also liked having something to eat and drink as he bobbed his head to the music.

This summer, we also took him to the Saturday farmers’ market here in town and the European Market in nearby Chesterton. Even though these were on his request list, Alex seemed more interested in walking as fast as he could past the displays instead of actually shopping. In fact, he reminded me of Chevy Chase’s character Clark Griswold in the movie Vacation at the Grand Canyon, nodding his head and moving along, just to be done. Consequently, we bought nothing, but we could at least check off another item on Alex’s list.

Also, we took him to Zao Island, but the miniature golf course was extremely crowded. Even though Alex is much more patient than he used to be, we felt that the wait would be too much for all of us. Perhaps we will try again before summer is over; I always enjoy Ed telling Alex repeatedly to look at the golf ball because Alex is looking everywhere but at the ball. Nonetheless, Alex enjoyed playing the Wheel of Fortune video game and the NASCAR simulation racing game, where he drives Dale Earnhart Junior’s car but drives recklessly, running into walls and other cars, making us glad that he does not have a driver’s license. Even though his favorite video game, Deal or No Deal, was broken, he still smiled the entire time. I think we definitely need to return to Zao Island for a round of miniature golf and a try at Deal or No Deal before summer ends.

For years we used evening trips to Dairy Queen as a reward for good behavior in the summertime. Even though Alex’s diet limits his options on the Dairy Queen menu, he likes their Arctic Rush slushes and typically keeps a mental list in which he rotates the flavors he likes: cherry, lemon-lime, and strawberry-kiwi. Although blue raspberry is another option, he never chooses it because he doesn’t like the “blue lips and blue tongue” that is inevitable after drinking one. This summer, Alex has strayed from his usual slushes, choosing instead to have their gluten-free french fries with root beer to drink. Even though we no longer have to bribe him with trips to Dairy Queen, he still enjoys frequent visits there for a snack or dessert.

Because going to the movies can be overwhelming with the big screen, loud volume, and crowds, we have avoided taking Alex to the movie theater for fear he would have sensory overload. In fact, the last time we took him to the movies was before we knew had had autism; we went to see Toy Story when he was three years old. Although he was fine then, we never took him to movies again for fear that he might get upset. Moreover, he never really seemed very interested in anything that had a plot. Recently, though, he has shown greater patience and enjoyment in following the plot of television shows and movies on t.v., so we thought we’d give this another try. When he asked to go to the movies, specifically to see the new Pixar movie Inside Out, which he’d seen advertised on television, we thought this was the perfect time to take him. Once again, he showed how much progress he’s made, sitting calmly and enjoying the movie, never complaining about how long he had to wait or asking when he could go home.

His patience also paid off as he waited for the final item on his list request list to be fulfilled. After rainy and unseasonably cool weather this summer delayed his sprinkler runs, he finally was able to enjoy sprinkler time during some hot days in the past two weeks. Even though most young men his age would not think hanging out in the backyard sprinkler was something cool to do, Alex sees this as a fun summertime activity that he’s anticipated every year. As we watch him enjoy that simple pleasure, we are reminded that even though he’s come so far, he’s still basically a little boy at heart.

As summer comes to an end, I think all three of us can easily say that this has been our best summer ever. Alex has been able to do all the things he wanted to do, and Ed and I have been thankful and happy to watch his delight as he engaged in these common activities that brought him such joy. God has truly blessed us, and we are grateful.

“Listen to my voice in the morning, Lord. Each morning I bring my requests to You and wait expectantly.” Psalm 5:3

Sunday, July 26, 2015

Setbacks and Stepping Stones

 
With autism, progress doesn’t always mean moving forward. Sometimes setbacks occur that teach us so that we are ready for the stepping stones that lead us toward our goals. In January, Alex began attending a day program for adults with disabilities where he has been working one-on-one with a staff person to learn computer skills. Because he has had behavioral issues in the past, they requested that Ed stay in case any problems arose. Although Alex has made significant improvements in his behavior, we understood their concerns and were willing to do whatever was needed to make sure Alex was successful. Frankly, we were unsure how he would adapt to the new environment, but he made us proud by handling himself very well. Once they were confident that he could behave himself, they decided that Ed could simply drop him off and pick him up at the program and did not need to stay for the entire session. Moreover, they increased his sessions from once a week to twice a week. Despite various situations that in the past would have thrown Alex for a loop, such as a broken computer printer, a fire drill, changes in the staff who worked with him, the internet being down, etc., he never seemed to get upset and rolled with whatever came his way there.

In fact, he seemed to handle situations so well that they suggested that he stay for lunch after his computer classes so that he could socialize with the other clients, who are about his age. When this new schedule began last month, we were again uncertain as to how Alex would adapt, but he enjoyed being with other people and seemed to be following the rules. All of the feedback we were given indicated that he was doing very well, and we were delighted that he had the opportunity to learn computer skills and to interact with his peers.

While we thought everything was going amazingly well since we had only heard positive reports, we found out that they were not happy with him because he had been resetting the microwave oven. Because of his OCD, Alex needs for the world to be just so, which means that he always closes cabinet doors and drawers and that he needs for clocks to be accurate. Also, he believes that if a microwave is stopped midway through the cooking cycle, it should be cleared back to the original clock setting. Apparently, someone at the day program was stopping the microwave without clearing the cooking time, and Alex saw those flashing lights as an invitation for him to fix a problem. Clearly, he needs to respect other people’s property, but I’m sure he intended his actions to be helpful: someone forgot to reset the microwave, and he was happy to remedy the problem so that everyone could see the clock again. Moreover, we didn’t know he was doing this until they told his behavior therapist when she checked with them regarding his progress, and she relayed the information to us. Once we were alerted to the circumstances, we talked to Alex and told him that he was not to touch their microwave because it was not his. He seemed to understand, but he probably would need to be reminded since his need for clock accuracy is so strong.

In addition, we found out that he had been imitating other people’s voices, something he does when he likes a person. He truly does not intend to mock the person; in this case, he copies them because he admires them. Again, we reinforced with him that he cannot imitate people because it’s rude, and he seemed to understand. We also discovered that he had been invading other people’s personal space by standing too close to them or by trying to touch them, which we know he cannot do, especially since he is so big that he can appear threatening. Once again, we discussed this issue at length with him once we were aware of the problem, and Alex seemed to take this concern to heart.

A few weeks ago, after six months of good behavior, Alex became upset and grabbed his staff person, which was unacceptable, and they called Ed to come and get him immediately. Right away, Alex knew that he had handled the situation wrong and expressed remorse for his actions. Also, I discovered that he had thrush, the yeast overgrowth in his mouth that has plagued him repeatedly for more than three years and causes him to be extremely irritable, which probably caused him to become agitated. After much communication between their staff, Alex’s case manager, our behavior therapist, and us, they finally decided that Alex could continue but with some restrictions, including having Ed stay part of the time in case Alex had any issues. Again, we understood their concerns and complied with their requests, and we emphasized with Alex the need to behave himself.

Since then, he has apparently been following the rules, but he has also been a bit anxious, seemingly worried that he will make a mistake. In fact, he asks us after every session if he did anything bad because he truly wants to do a good job. Last week, the director told Ed that Alex had a bad morning, but when he asked Alex’s staff member what had happened, she indicated that he had been clearing the microwave again and dismissed it as rather minor. As teachers, Ed and I obviously understand the need for students to follow the rules, but we also value accurate and specific feedback. As parents, we will do everything in our power to make Alex the best that he can be, but we will also lovingly help him to do better when he falls short. Alex knows that he can always count on us, no matter what, and that support gives him the confidence to try again.

While I wish that Alex would always follow the rules and behave perfectly, realistically I know that he will make mistakes, and we will help him learn to do better the next time. Just as Alex is learning from these experiences, I am also learning valuable lessons that I hope will make me better as a person, parent, and teacher. Because I appreciate that Alex’s behavior therapist and music therapist always emphasize his strengths, even when noting his weaknesses, I know how important being positive is when I deal with my students. Moreover, Alex’s therapists move on after he makes a mistake, knowing that he will stumble at times, and they don’t dwell on what he did wrong, but instead praise how he recovered nicely afterward. Finally, the compassion and understanding that they show Alex and us as his parents, knowing that we are doing our best under the difficulties autism presents, strengthens and helps us move forward so that Alex can continue making progress. As the new school year approaches, I know what kind of teacher I want to be—one who knows that my students will stumble from time to time, but who is there with a helping hand to lead them to the next step, patiently encouraging them along the way and praising their efforts so that they want to keep learning and trying. Just as Alex continues to learn, I realize that I am still learning, too, making mistakes and making amends, thankful for all the lessons he teaches me along the way.

“Though they stumble, they will never fall, for the Lord holds them by the hand.” Psalm 37:24

Sunday, July 19, 2015

The Calm After the Storm

 
Sometimes the signs are so subtle, they would be easy to miss. Nonetheless, we celebrate every step of progress we see Alex make, knowing that he is, indeed, getting better. This week some seemingly small incidents reminded us just how far he has come, especially in learning how to remain calm in any situation.

On Thursday morning, Alex awakened shaking. Shaking is not uncommon for Alex and has various triggers. For example, the lithium he takes to stabilize his mood can cause occasional tremors in his hands. Also, he has hypothyroidism that makes him more sensitive to being cold, and he sometimes shakes when he feels cold. In addition, when he’s excited or ecstatic about something, he will shudder with joy, as though he cannot contain the happiness inside him. On that morning, however, the shaking was not caused by any of those reasons. After looking at the expression on his face, I could tell that he was having a panic attack, and excess adrenaline was causing his entire body to shake. Often panic attacks will send him into the fight of the “fight or flight” mode, and we knew we had to approach him gently so that he would not become aggressive.

As we tried to soothe him, he told us that he was upset because he had made a mistake. Knowing we shouldn’t push him too hard or argue with him, we told him we understood, and we respected his decision to stay home from his computer class. Since he loves going to computer class, we knew he must have really not felt well in that he was deciding not to go. We asked him if he wanted us to stay with him until he felt better or if he’d rather be alone, and he told us he just wanted to be left alone. His ability to make rational decisions and remain reasonably calm without escalating to yelling, throwing things, or becoming aggressive demonstrated a significant and welcome change in his handling of anxiety. After reassuring him that we were there if he needed us, we honored his request to be left alone. Fortunately, he also understood my need to check on him regularly and never became upset when I asked him if he was feeling better.

A little later, I asked him whether or not he felt well enough to go to music therapy that afternoon. Although he was less anxious, he was still a bit jittery. However, he decided that he wanted to go to music therapy and began getting ready to go. I asked him whether he needed a dose or even a half dose of Valium, which his doctor has prescribed for panic attacks, to make him feel calmer, but he was confident that he didn’t need the medication to cope with his anxiety. When we arrived at his music therapist’s office, I told him that Alex had been anxious that morning but insisted that he wanted to come to music. His therapist told him that he admired his dedication and reassured Alex that if he wasn’t feeling well, they could cut the session short so that he could go home and relax. Sitting in the waiting room, I wondered if Alex would make it through the entire session, but he did, emerging smiling at the end. His therapist told me that Alex had done a great job and seemed to be calm. In fact, I sensed that the session had made him even calmer, perhaps doing a better job than the medication might have. Clearly, Alex knew what he needed to make himself feel better, and he was able to communicate those needs to us instead of resorting to negative behaviors, which is a tremendous blessing.

Later that evening, we were able to go out to a nice restaurant as a family to celebrate our wedding anniversary, and Alex showed no signs of the anxiety that had bothered him in the morning. He thoroughly enjoyed his dinner, especially since it was his favorite food––shrimp––and used nice table manners. In addition, he practiced social skills by engaging in conversation, asking appropriate questions, and never interrupting. Even when another waitress came over to engage him in conversation (We learned that she had worked with adults with disabilities.), he answered her questions nicely. Clearly, all of the skills that Alex's therapists and we have been teaching him are making an impact.

Yesterday, we again saw how well Alex has learned to cope in situations that previously might have upset him. We took him to his cousin’s graduation party, where there were lots of people gathered under a tent in mid-90 degree heat. My mom noticed that Alex was shaking, but when I asked him whether he was nervous or excited (knowing that he certainly wasn’t cold), he shuddered and told me that he was excited, meaning that he was happy to be there. Even as a storm loomed closer with thunder and lightening, which used to terrify Alex, he remained calm and pleasant.

With the storm approaching, we decided to take him to a nearby restaurant for dinner. Just as we walked in the door, rain began pouring down, and winds began whipping around. Suddenly, the electricity in the restaurant went out before they could take our order. Even though we were basically stuck there since we didn’t want to go out in the storm, Alex didn’t get upset about the power outage or the storm. In fact, he seemed to see the whole situation as an adventure, commenting, “It’s very rare for the power to go out. The odds are about one in one hundred.” He maintained that calm, waiting patiently for the storm to pass and the power to return, and then happily enjoyed his dinner once the electricity returned and allowed his food to be prepared. Based on past experiences where changes of plans could send Alex into a panic, Ed and I kept watching him to make sure he wasn’t getting agitated, and we were amazed and pleased by how well he handled the situation. Once again, he showed us how much better he is now.

While many people would take for granted a young adult’s ability to cope with a panic attack, a strong storm, or a power outage, let alone to make pleasant conversation, we know how significant these milestones are for Alex, and we thank God for making him better. Learning to handle social situations and to deal with anxiety has not come easily for him, yet he has worked hard so that he can enjoy typical situations, such as going out to a restaurant, or even how to cope in rare circumstances, such as when the electricity suddenly goes out. Essentially, he is showing that he can deal with the storms of life­­––whether internal or external––so that he can enjoy all that life has to offer.

“Then they cried out to the Lord in their trouble, and He brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed. They were glad when it grew calm, and He guided them to their desired haven.” Psalm 107:28-30

Sunday, July 12, 2015

Smell and Taste Sensitivity in Autism

 
In last week’s blog entry, I discussed the issue of sound sensitivity, which is quite common in people with autism, and how listening to the EASe CD with modulated music helped Alex overcome his difficulty with loud noises, such as vacuum cleaners and hair dryers. This week, as I was reading various research articles from The Great Plains Laboratory, Inc. Facebook page, I ran across two interesting studies related to other types of sensory issues found in autism. Although Alex’s sensory issues have primarily focused upon hearing, sight, and touch, apparently many people with autism also have overly acute senses of smell and taste, as well.

A news report entitled “Study: Kids with autism don’t react to odors” describes research in which thirty-six children, half of whom had autism and half who did not, were presented with various smells through an olfactometer. [To read this article, please click here.] This tool delivered various scents through the nostrils and then measured how the children responded to those smells by how much they sniffed. Typical children breathed in longer for pleasant smells, such as roses, and breathed in a shorter time for unpleasant smells, such as rotten fish. In contrast, children with autism breathed in the same amount of time, no matter what scent they smelled.

The study notes that the response from the children with autism may be linked to a difference in perception of odors, or this may be a physical issue in that they cannot control their breathing in response to different stimuli. Either or both of these theories seem reasonable, since children with autism typically have sensory and motor issues. Whether this sniff response has possibilities as a diagnostic tool for identifying children who have autism is uncertain, but researchers noted that the observed responses might explain the problems many children with autism have with eating, since the sense of smell is closely linked to the sense of taste. However, as one autism researcher noted, the problems with eating may also be linked to motor problems in swallowing and chewing.

Although I’m not completely certain how well Alex can perceive smells, he will comment when he smells something unpleasant, telling us, “It’s too stinky!” and even leaving the room to avoid the smell he doesn’t like. Moreover, he will tell us to spray air freshener, saying, “Need Oust in here!” if the smell is mild. If the smell is too offensive, he’ll say, “Need to spray Lysol!” Also, he has recently begun to make comments comparing one smell to another, remarking, “It smells like french fries in here.” Consequently, he seems to deal with his smell sensitivities because he can verbalize ways to describe them and or even ways to eliminate those he finds offensive. Perhaps his control over smells is one of the reasons he is not a picky eater like many people who have autism.

In another article posted on The Great Plains Laboratories’ Facebook page this week, the Simons Foundation Autism Research Initiative recently published the summary of a research study entitled “Picky eating sways parents’ views of children with autism.” [To read this article, please click here.]  This study from Italy found no differences in behavior or physical issues, such as gastrointestinal problems, in children with autism who were picky eaters versus those who were more willing to eat a variety of foods. However, parents of children who were picky eaters perceived their children to have more behavioral problems and more stress.

Interestingly, the article notes, “the root cause of picky eating in autism remains unknown.” However, the article fails to address sensory issues that likely would impact the child’s eating habits. If the food smells strange or the texture does not appeal to the child, the child won’t want to eat it. Moreover, as the autism researcher in the previous article mentioned, difficulties in chewing and swallowing often found in autism would certainly play a role in eating problems. While this article focuses upon parents’ perceptions of picky eaters, underlying issues beyond the behavioral and physical components they examined are clearly at work.

As I have mentioned in previous blog posts, we are blessed that Alex has always been a remarkably good eater, willing to try any food. Moreover, despite the limitations his food sensitivities present that restrict him to a diet free of glutens and milk products, he eats a wide variety of foods. For most of his life, the only three foods he would not eat—other than those not permitted on his gluten-free casein-free diet, which he follows faithfully––were popcorn, broccoli, and mashed potatoes. In the past few years, he has even taken two of those foods off his list and now likes broccoli and mashed potatoes prepared without milk products. We suspect that his former dislike of those two foods was more from a texture standpoint than a taste and smell aspect. At this point, the only food he will not eat is popcorn, which he tells us is “too salty and too crunchy.” Needless to say, we are delighted that he is such a good eater; in fact, he eats a more varied diet than either of his parents. He loves seafood, which I despise, and he happily eats peas, carrots, and mayonnaise, which Ed avoids. Apparently, Alex does not have the smell and taste sensitivities that many people with autism have, and we are thankful for that.

While a great deal about autism remains a mystery, sensory issues, such as sound, smell, and taste sensitivity obviously impact daily life. If these hyperacute senses create stress, the person may either avoid uncomfortable situations or may react in ways to cope with the unpleasant stimuli. Often therapists who work with children who have autism will note, “Behavior is communication.” Meltdowns may be the only way some children with autism can communicate how overwhelmed they feel when they are assaulted with sounds, smells, and tastes that are too strong to handle. As parents, we need to find ways to help our children cope with the world that is often too much for them, and hopefully, research will find better methods to allow children with autism to enjoy the variety of sensory experiences in life so that they can live life to the fullest extent.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Sunday, July 5, 2015

Sound Sensitivity in Autism

 
Last week with the Fourth of July holiday approaching, various people asked me if fireworks bother Alex. Because so many people with autism have sound sensitivities, this was a very reasonable question. In fact, many children and adults with autism find certain noises quite disturbing and must cover their ears or wear noise-cancelling headphones in situations where loud noises are present. Fortunately, fireworks and other annoying sounds do not upset Alex, and I believe that a home therapy program we did with him when he was about five years old greatly helped address his sound sensitivity. As I listened to the teenage boys who live behind us setting off all kinds of fireworks last week, including throwing M-80 firecrackers in garbage cans that made our neighborhood sound like a war zone, I was thankful that Alex isn’t bothered by loud noises any more.

When Alex was little, his sensitivity to sound was one of our first clues that he had autism. As a baby, he would pick up his head when our relatively quiet furnace would come on, and he seemed to recognize the sound of our cars when one of us pulled into the driveway, showing joy that Mommy or Daddy had come home even before we walked in the door. In contrast, the sounds of the vacuum cleaner and hair dryer terrified him, sending him running away and crying. I remember once when he was a toddler that as he and I sat in the car waiting for Ed to scrape ice off the windshield, he was nearly hysterical, apparently upset by the scraping noise.

When I mentioned this sound sensitivity to his pediatrician, who was certain that Alex didn’t have autism and that I was just an overly concerned mother, he suggested that we take him to an audiologist to have musician’s earphones specially made for him to cancel out background noise. Knowing that he would outgrow these custom-made earphones quickly, spending hundreds of dollars on having them made struck me as a waste of money. Instead, I began looking into ways to treat his sound sensitivity, not just ways to block noise, realizing that he would often encounter surprising sounds and may not be prepared with earplugs, earphones, or headphones at all times.

My research led me to reading about auditory integration therapy, or AIT, developed by French ear, nose, and throat doctor Guy Berard in the 1950’s to address hearing sensitivities and imbalanced perception of sounds in the ears. AIT programs typically require twenty sessions of listening to specially modulated instrumental music with a variety of sound frequencies. These twenty sessions typically last thirty minutes each over ten days with two sessions per day that are at least three hours apart. Generally AIT takes place over two weeks––five weekdays followed by a weekend off and resumed the following five weekdays. In addition, AIT requires that the client wear headphones for the thirty-minute sessions and basically do nothing except listen to the music.

After reading that some children with autism respond very well to AIT, I considered whether this therapy might benefit Alex. However, I had some doubts as to whether this treatment had any merit because its methods seemed somewhat suspicious to me. Moreover, the cost of the treatment––typically $1000-$2000––was quite expensive. If AIT worked, it certainly would have been worth the money, but I was still skeptical. Another concern I had was that Alex’s sensitivity to touch was even greater than his sensitivity to sound, and I could not imagine that he would be able to wear headphones for the ten total hours he would be required to wear them for the AIT sessions.

Consequently, I began seeking alternatives and found the EASe CD, which was recommended by another autism mom. EASe, which stands for electronic auditory stimulation effect, was created in 1995 to help address sensory processing issues in children with autism and others with sensory difficulties. Essentially, the program works very similarly to AIT in that the person listens to instrumental music modulated with various sound frequencies for thirty-minute sessions twice a day for ten days. Unlike AIT, however, the creators of EASe seemed to understand that some children would not be able to use headphones and suggested that they could listen to the CD on a stereo with good speakers instead. In addition, the cost of this in-home program, which offered great convenience, was only about $60 to purchase the EASe CD that could be used over and over. After watching Alex cover his ears every time a loud appliance was turned on, I decided it was time to try the EASe CD and ordered a copy.

That summer, I faithfully followed the prescribed schedule of twenty half-hour sessions over ten days, playing the CD that sounded like pleasant but slightly strange elevator music over our stereo speakers with Alex, who was remarkably cooperative about listening. I can still picture him at age five, sitting in our living room, contentedly rocking in our La-Z Boy rocker recliner as he listened to the EASe CD. While I listened along with him, I still had my doubts as to the effectiveness of this therapy, but we soon noticed that he stopped covering his ears when he heard loud noises, and he no longer became upset by the sounds of noisy electrical devices. Over time, his sensitivity to sounds seemed to disappear completely, and I credit the EASe CD with that positive outcome.

Recently, I checked online to see if EASe was still making CDs and discovered that they have expanded their line to several different music CDs from the original one we first purchased in the 1990’s, and they also have also developed games to address sound sensitivity. Moreover, they offer a free download of their EASe music CD, which seems like a great way for parents to try the program and see if their children might benefit. In addition, their website clearly explains how the program works, answers many questions parents might have, and offers testimonials of customers who have benefited from the program. [To check out the EASe website, please click here.]

Even eighteen years later, we still see the benefits of the EASe CD in that Alex handles noise amazingly well, never covering his ears and never needing to wear headphones in noisy situations. We take Alex to concerts, sporting events, and even fireworks displays, and he enjoys himself thoroughly, never bothered by the loud noises that once upset him greatly. With the various issues autism presents that makes Alex’s life difficult, we are thankful that we found a therapy that allowed God to heal him so that he could enjoy typical family outings without being bothered by sounds. Now, that is something definitely worth celebrating with fireworks!

“But Moses replied, ‘No, it’s not the shout of victory nor the wailing of defeat. I hear the sound of a celebration.’” Exodus 32:18

Sunday, June 28, 2015

Alex Asks

 
As autism parents, Ed and I are blessed that Alex, unlike many people with autism, can speak. Although speaking is difficult for him both in terms of generating what he wants to say and in terms of articulation, or speaking clearly, he can express himself enough that we can understand what he wants to convey verbally. For many years he struggled to construct questions, yet we knew he wanted to ask about the things he had seen and heard. Even though we modeled for him how to ask questions and taught him the W’s (Who, What, When, Where, and Why), he could not put all the pieces together to ask the questions he had in mind. Instead, he would simply say a key word in a questioning tone of voice so that we knew he wanted to know something more about it. However, over time he has thankfully developed the ability to ask us questions so that we get glimpses into what is going on in his mind, and we recognize that the things that sometimes seem rather superficial are actually quite deep.

Since we gave him an iPad Mini several months ago, Alex asks us fewer questions because he can ask Google for information he thinks we don’t know. To make sure he is visiting appropriate websites, Ed and I regularly check his search history to see what topics he has Googled. Not only are we relieved that he consistently uses safe websites, but we are also fascinated when we see what questions he has asked Google. For example, he asked Google this week, “How much does a bathtub weigh?” Since he loves numbers and baths, I suppose this question shouldn’t surprise us. For another search this week, he asked, “How many children are there around the whole world?” Additionally, he asked, “How many home runs does Alex Rodriguez have?” The most unusual topics this week were “Rolex watches” and “Afro wigs”; I’d love to know what triggered his curiosity about these two topics.

Looking down through the Google search history list, we can see that he is most interested in learning about people, and as we know, he wants statistics about them so that he can categorize them. This week he searched for ages, heights, and weights of former baseball player Mark McGuire, celebrity chef Emeril Lagasse, Wheel of Fortune’s Vanna White, newscaster Jim Lehrer, and singer Bob Dylan. The celebrity who seemed to fascinate him most, however, is Suzanne Whang, who narrates several shows on HGTV. He wanted to know her birthday and weight, but clearly what he finds most interesting about her is her voice. Specifically, he had Googled “Suzanne Whang’s voice,” “Listen to Suzanne Whang’s voice” and “Suzanne Whang has got a soothing voice.” Now we understand why he has shown an enthusiasm for watching home improvement shows lately. He’s really not watching them as much as he’s listening for Suzanne’s soothing voice.

While Google helps Alex answer trivia questions about celebrities he likes, he still relies upon Ed and me to answer other questions. Not long ago as we were saying bedtime prayers together and naming off all the people whom he wants God to bless––a list that seems to grow longer every week––I asked him if we’d missed anyone. He asked me, “How about Dr. [name of psychiatrist we saw only once eight years ago]?” At first I was surprised that he even remembered this doctor because our encounter was brief and long ago. Also, I was totally unimpressed with this doctor because he was rather rude and very unhelpful, which is why we never saw him again. Moreover, he basically ignored Alex during the appointment, so I have no idea why he would have made an impression on Alex. However, Alex remembered him and wanted to pray for him, and so the psychiatrist we saw only once has become a regular in our nightly “God bless” list. Somehow Alex believes this doctor needs blessings, and the more I think about it, Alex is absolutely right. Even though the doctor showed little regard for Alex, Alex didn’t take offense and showed the proper attitude by repaying rudeness with kindness, which makes me proud as his mother.

Recently Alex asked me an interesting question that also showed his compassion toward others. Out of the blue, he asked me if he could learn sign language. When he was in special education preschool, sign language was part of the curriculum to help the students with speech delays learn an alternative way to communicate. Because Alex also has fine motor delays, he could not make his hands do the symbols, and he really wasn’t interested in learning how to use sign language. Nearly twenty years later, he suddenly wants to learn sign language, so I asked him why. Immediately he explained that he wanted to be able to talk to another young man in his day program who is hearing impaired and has limited speech. The thoughtfulness behind his motivation made me proud of the young man he has become. Even though autism impairs his social skills and the motor skills in his hands, Alex wants to be able to communicate with a friend and is willing to do the work needed to accomplish this goal. Consequently, I taught him how to finger spell his friend’s name in sign language, and even though Alex’s fingers struggled to make the letters correctly, he smiled as he kept trying.

Because words come easily for me, I have often spoken for Alex, knowing that he struggles to express his thoughts and feelings. However, I realize that he has a great deal to share with the world, and I need to encourage him to allow his voice to be heard. Clearly, he has shown independence by developing his typing and written language skills so that he can discover more about topics of interest to him. What pleases us even more, though, is that he is not only improving his speech but also learning to convey his compassion for others by learning to communicate with them in ways that are difficult for him but are comfortable for them and by praying for people he believes deserve God’s blessings. And so, I conclude with a question of my own: Is it any wonder that my son makes me so proud?

“And without question, the person who has the power to give a blessing is greater than the one who is blessed.” Hebrews 7:7

Sunday, June 21, 2015

Autism Dad

 
When Ed envisioned fatherhood, I have no doubt that he never pictured himself as being an autism dad. Nonetheless, he has not only accepted the additional responsibilities and concerns of raising a child with autism, but he has also become more patient and more devoted because of Alex’s special needs. Unlike some fathers who flee when the terrain becomes rocky, Ed has remained steadfast as we have worked together cooperatively to parent Alex the best way we know how. Today on Father’s Day, I would like to give Alex’s dad proper credit for just a few of the many things he does to make Alex’s life––and therefore, my life––better, or in the affirming words of Alex, “good and special.”

1. He has created a younger version of himself in Alex. As Alex grows older, he has become his dad’s twin who loves math, seafood, and Bob Dylan—all things that I despise. Sometimes, when I hear the caterwauling of Bob’s voice coming from the basement while they are listening to him “sing,” I suspect that they are enjoying the thought of annoying me by turning up the volume so that I must listen, as well. While I don’t dare venture any closer when they are listening to music, I do enjoy observing the two of them as they watch sports together on television. Although Alex enjoys the numerical aspects of sports, such as statistics, I think he enjoys spending time with his dad even more. Their shared contentment makes me content—even when I don’t agree with their taste in music.

2. He takes great pride in all of Alex’s accomplishments, no matter how small they may seem. Having gone through some very difficult stages with Alex, we are grateful when things go smoothly. Whenever we take Alex to a restaurant or a family gathering, we are amazed how well Alex behaves now, and Ed always praises Alex and tells him how much fun going places with him is. Also, Ed will later comment to me about how good Alex’s behavior was and about how he appreciates that we can relax when we take him places because he is so good now. In addition, Ed’s pride in Alex shines through when he tells me about his experiences dropping off and picking up Alex at his day program, which is one of the responsibilities he has gladly assumed. Although we were a little nervous about how Alex would do in the day program, Ed has been pleased to share with me the positive response Alex has received from the staff and the other clients.

3. He has become amazingly patient. Because autism has presented many obstacles for Alex, mastering skills often takes a long time. Nonetheless, Ed encourages him constantly with praise and convinces Alex that he can do tasks that seem too hard for him. Although I tend to want to do things for Alex because I don’t want him to be frustrated, Ed knows that Alex must do things for himself and coaches him patiently so that he can feel the sense of accomplishment of doing something himself, even if it takes some time. In addition, Ed gently and patiently encourages Alex to improve, reminding him to stand up straight with his hands at his sides and encouraging him to speak louder so that we can hear what he has to say. Sometimes figuring out what Alex is saying is like playing a game where we ask him, “Where did you see that?” “What letter does it start with?” “Can you spell that?” and “What’s the most important word in that sentence?” to see if we can use clues to figure out what he’s trying to tell us. Because Ed never gives up on trying to hear what Alex is trying to tell him, Alex patiently tries to explain to us what he’s saying so that we can understand him.

4. He supports me, no matter what. Through the years, I have many times become excited about some new autism research and methods I have found, and Ed never dampens my enthusiasm for trying something new. Although he asks questions, I know that he shows the wisdom to be led by his head when I tend to be led by my heart, and I know that he trusts my judgment if I truly believe that we need to try something new with Alex. Even though he doesn’t find medical research as fascinating as I do, he patiently listens as I happily rattle off the details. Last week, he even watched an hour webinar on his own volition given by a doctor whom he knows I admire and then told me about a question and answer session I had not yet seen that we watched together and discussed. To know that Ed always believes that I am doing what’s best for Alex has given me confidence to try new things that I would not have been brave enough to try on my own. For that trust, I will always be grateful.

5. He loves Alex as much as I do. Because Alex requires so much time, energy, and attention, he must come first in our lives. Although marriage counselors say that parents must put their spouses first instead of the children to keep a marriage strong, this prioritizing does not work when the children have special needs. Knowing that Ed is as devoted to Alex as I am, I know that he is not jealous of the all-consuming love I have for him because I know he feels the same way. By the same token, I understand that he loves Alex unconditionally, and that comforts me. Moreover, our shared devotion to Alex is precisely what has made our marriage strong: we share the same goal to provide Alex with a happy life in which he can reach his full potential.

Happy Father’s Day to all the dads, especially the autism dads whose lives didn’t turn out the way they’d planned, but whose children blessed them in ways they’d never predicted. Every day I thank God for Ed who blesses Alex and me with his unconditional love for both of us. “There ain’t nothing that I wouldn’t do, go to the ends of the Earth for you, make you happy, make your dreams come true, to make you feel my love.”––Bob Dylan

“My children, listen when your father corrects you. Pay attention and learn good judgment, for I am giving you good guidance. Don’t turn away from my instructions.” Proverbs 4:1-2

Sunday, June 14, 2015

New Things

 
This past week was the first week of my summer vacation from school, but it was a busy week filled with activity and new things. Thankfully, Alex handled the hectic schedule and transitions amazingly well, which shows the progress he’s made in being more flexible and willing to try new things.

On Monday, we had an appointment with his psychiatric nurse practitioner who prescribes his medications for OCD and anxiety. This was the second time that we had visited her new office, which is conveniently located less than ten minutes from our house. Previously, we had to travel about thirty minutes to her old office, and we’re thankful that our travel time is much less now, even though we only need to see her every six months.

For this appointment, Alex did an especially good job of answering her questions instead of relying on us to answer for him. We were also pleased to tell her about the additional services that Alex receives since she last saw him in December. She had good news to share, as well, telling us that all of Alex’s blood tests looked very good. Since his lab work indicates normal levels and he is doing so well, she decided to not make any changes in his medication. After we thanked her and left her office, we took Alex to Target to pick out the things he would need for his next adventure on Tuesday.

“Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert.” Isaiah 43:19 KJV

On Tuesday, Alex not only had computer class at his day program for adults with disabilities, but he also stayed for lunch hour there with his peers for the first time, something he’d been eagerly anticipating for weeks. With his brand new lunch bag that he chose himself, he headed off for class and lunch with friends. When Ed went to pick him up afterward, they told us that he had done very well but was a little shaky, which can happen for various reasons.

After we questioned him a bit, he told us that he was a little nervous that we might not pick him up on time after lunch. Considering that he’s used to being around us most of the time, his separation anxiety was understandable. We reassured him that we will always pick him up on time, and he seemed satisfied. During his behavioral therapy session that afternoon, his therapist also assured him that he didn’t need to worry about being picked up after lunch because he could depend on us.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19 ESV

On Wednesday, his caretaker Jessica came to, as she says, “hang out with” Alex in the afternoon. Ed and I had planned to go out to lunch while she was there, but Alex seemed to be a little off. In fact, he told me that if we left, he was going to be bad for Jessica. Since that didn’t sound promising, I told Jessica that we’d stay home since I didn’t trust him. However, Jessica stepped up, assertively told Alex that he was going to behave while we were gone, and encouraged us to go, insisting that they would be fine. Since I still had doubts, I told her to call me on my cell phone if she needed anything, and I kept checking it throughout our lunch. However, she never called, and when we came home, she told us that Alex had been perfect and had not given her a bit of trouble. This was the first time that I had left him when I was concerned he might not behave, but Jessica’s no-nonsense attitude showed Alex that she was boss, and he complied.

“See, I will do a new thing, now it shall spring forth; shall you not be aware of it? I will even make a way in the wilderness and rivers in the desert.” Isaiah 43:19 MEV

On Thursday, Alex once again had computer class and lunch at his day program, and he once again got along very well. In fact, the supervisor told Ed that after lunch, she had Alex help clean up by washing dishes, wiping off tables, and running the vacuum cleaner. Not only was he comfortable having lunch there on just his second time, but he was also practicing daily living skills by cleaning up afterward. He seemed pretty proud of himself when he told us what he had done while he was there.

That afternoon, we had another new thing: instead of having his music therapist come to our home for his session, we went to the music therapist’s new office here in town for the first time. Even though we had prepared him for this change, his music therapist and I anticipated that he might need some transition time to adjust to the new setting. However, Alex sat right down at the keyboard with a huge smile on his face, ready to start the session. Afterward, his therapist told me that he had done a terrific job and didn’t seem to mind being in a new place at all. This new flexibility on Alex’s part amazes all of us who know him well.

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 NIV

On Friday morning, we took Alex to his new doctor for a follow-up visit since he last saw her for the first time in the fall. At that visit, he was pretty edgy and didn’t seem comfortable in the new office. However, this time he was calm and pleasant, and he answered the doctor’s questions nicely. Because he has yeast overgrowth, thrush, in his mouth again, we’re going to treat him with antifungal medication, and we’re going to try vitamin B12 shots for a few months to treat his slight anemia. Even though we have done these treatments before, doing them with a new doctor feels different. However, we like her very much because she is kind to Alex and takes our concerns seriously. We pray that she will help him continue to heal.

“Be alert, be present, I’m about to do something brand-new. It’s bursting out. Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.” Isaiah 43:19 MSG

Yesterday we started Alex on a new supplement to help heal his gut and boost his immunity. After listening to an online lecture featuring a doctor who specializes in internal medicine and wellness, I found his explanation of inflammation and its connection to disease logical and fascinating. Consequently, I decided to try his recommended protocol for Alex in hopes that we can eradicate the stubborn yeast infections that have plagued him for more than three years. We pray that this new method will bring healing not just to Alex but also to others with autism. As someone who does not like change, I felt a bit unnerved as this week of new things shifted us out of our comfortable rut. Nonetheless, I have faith and hope that God is making the paths out of the autism wilderness, desert,  wasteland, and badlands, and He is taking Alex where he needs to go. Behold!

“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 NLT

Sunday, June 7, 2015

Little Things Mean a Lot

 
My school year ended on Friday with a teachers’ work day in which we completed our paperwork for the year and packed up our classrooms for the summer. Like our students, we also spent time socializing to make the work more pleasant. As I was visiting with my friend and colleague Melissa, our friend and colleague Justin stopped by to ask where the old textbooks should be taken for recycling. Knowing that Alex would love to have an old science textbook to read, I asked Justin if he could put one aside for Alex. He assured me that he would, and then Melissa asked if Alex would also like to have an old geography textbook, which I knew he’d be happy to have. As I was getting the geography book, Justin returned with not one but four old science textbooks in excellent condition. My friends’ thoughtfulness not only delighted Alex, who was thrilled to have new books to read for the summer, but their kindness also blessed me in that they were doing something nice for my son. While both of them shrugged it off as no big deal, this small gesture meant a great deal to Alex and to me. Indeed, as the old saying goes, “Little things mean a lot.”

Later that day, I received a Facebook invitation from an autism mom friend to a page called “Cards for Trent.” Thanks to Facebook, many autism parents in our area have been able to get to know each other and share information. In this instance, a family friend had made a request that people send graduation cards to a young man with autism. As she explained, Trent has never had a birthday party and will not be having a graduation party and he never asks for much. She went on to say, “He doesn’t have any friends which is ok with him. He loves receiving mail and checks his mailbox everyday hoping there is something in there for him.” With this in mind, she requested that people send him cards congratulating him on his graduation from high school because it would “help bring him some happiness.”

After reading this heartfelt request, I was deeply touched because, like Trent, Alex and other young adults with autism often lack the social skills needed to have friends. Fortunately, Alex doesn’t really seem to notice because he considers our family, my friends who have been kind to him, and his therapists to be his friends. For him, that’s enough. However, knowing how much small acts of kindness mean to Alex, I copied down Trent’s address and sent him a graduation card the next day. That day, his family posted a picture on Facebook of his sister holding a big stack of cards they had received, and I’m sure they were grateful for the kindness of people who had reached out to their son. I hope that these cards make their son as happy as Alex is when he receives cards in the mail. In this age of convenient e-mail and text messages, we sometimes forget that sending a card in the mail can mean much more. For example, every year my dear friend Sharon always sends Alex a birthday card in which she writes a personal message to him and signs it, “Your friend, Sharon.” Alex looks forward to receiving his card from Sharon every year, and he often carries it around the house with him. Little things mean a lot.

A quick Google search of ways to help parents of children with autism will bring up links to lists of suggestions of what to do, what not to do, what to say, and what not to say. For those who want to help but are unsure of how their offers might be accepted, I would suggest this: send the child/adult with autism a card in the mail to let them know you are thinking of them, especially for a milestone—birthday, graduation, holiday, etc. We have been blessed that Alex has various people who remember him with cards: my parents who send him cards for each holiday along with some spending money, my sister who makes special mathematically themed cards for him, Alex’s Aunt Pat who sends cards for holidays and includes gluten-free and dairy-free treats, Alex’s Aunt Babs who sends him postcards from the places she’s traveled, and other family and friends who reach out to him in thoughtful ways. Even though Alex lacks the language skills to express his appreciation, I see how his eyes twinkle and his smile spreads across his face when he realizes that someone cared enough to send him a little something to brighten his day. As his mother, those acts of kindness bless me, as well.

Last week, we were at the grocery store looking at a display of the Coke bottles that say, “Share a Coke with” followed by a variety of first names. Alex enjoyed looking through these bottles and grinned whenever he recognized the names of family, people who work with him, and family friends.  Although he doesn’t express affection easily, these people mean a great deal to him. I know this because he names all of them in his prayers he recites with me every night before he goes to sleep. The next day, he asked me if there were any bottles that said, “Share a Coke with God.” I told him I didn’t think so, but I thought that was a really good idea. Whenever I feel wistful that Alex doesn’t have friends like most people his age, I remember that Alex doesn’t feel that way. He knows that God is his best friend, and he cherishes those who have been kind to him, even in small ways that would seem rather insignificant to most people. Somehow I think God would enjoy sharing a Coke with Alex, who sees the good in people and shows his appreciation by asking God to bless them every night. What more could anyone want in a friend?

“If your gift is to encourage others, be encouraging. If it is giving, give generously. If God has given you leadership ability, take the responsibility seriously. And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8