Sunday, October 20, 2019

Seek and Find


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 Vox [To read this article, please click here.] 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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
“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

Sunday, October 13, 2019

Comfort Objects


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 Peanuts’ 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.
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.
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.
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 Vox, author Sarah Kurchak explains why people with autism value comfort items. [To read this article, please click here.] 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.”
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.  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 Huffington Post, 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 here.]
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.”
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.
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 Vox 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.
“When doubts filled my mind, your comfort gave me renewed hope and cheer.” Psalm 94:19

Sunday, October 6, 2019

The Autism CARES Act


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 here.] 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.
According to an online article written by Michelle Diament titled, “Congress Considers Renewal of Autism Act,” and published online February 11, 2019, on Disability Scoop, the Autism CARES Act enables continued federal funding for autism. [To read this article, please click here.] Autism CARES is the acronym for Autism Collaboration, Accountability, Research, Education, and Support.
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.  [To read this summary, please click here.] 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.
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.”
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.
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.”
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.
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!”
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.
“Rulers lead with my help, and nobles make righteous judgments.” Proverbs 8:16