Sunday, October 25, 2015

The New Kid on Sesame Street

 
A few days ago, a new character joined the Sesame Street neighborhood, and she has already become controversial as a topic of discussion in the media. Julia has orange hair and green eyes. She has trouble making eye contact, sometimes takes a long time to answer questions, and flaps her arms when she is excited.  In addition, she is also described as curious and very smart. Julia has autism.

Introduced by the Sesame Workshop a few days ago, the new character is “part of an initiative designed to reduce the stigma surrounding autism.” [To read the news report from PBS, please click here.] This initiative, entitled “Sesame Street and Autism: See Amazing in All Children” provides online and printed story books, a free downloadable app, and resources for parents and teachers, including routine cards on how to handle everyday activities with children who have autism. Although Julia will share storylines with Sesame Street characters Elmo and Abby in the books and resources, she will not yet be a part of the long-running children’s television show.

Immediately critics noted that while autism is much more prevalent in boys than girls, the creators of this initiative chose to make this first character with autism a girl. In addition, the debate regarding how to refer to this character also appeared this week. Is she an autistic character or a character with autism? Some adults on the autism spectrum prefer that she be called an autistic girl, asserting that autism is part of the personality. Other people prefer the “person-first” language in which the disability comes last in describing the character: a girl with autism.

Yet another area of debate arose as Sesame Street chose not to address the controversy regarding the cause of autism. While some factions insist that autism is a genetic, congenital disorder, others believe that environmental factors, such as toxins from the environment and/or vaccines, trigger neurological damage that leads to the diagnosis of autism. Apparently, some critics accuse Sesame Street of siding with the pharmaceutical companies who manufacture vaccines because of their decision to avoid discussing any potential causes of autism in Julia.

Julia, however, is not the first character with a disability on Sesame Street. As early as the 1970’s, characters such as deaf actress Linda Bove, paraplegic Tarah Schaeffer, and blind Muppet Aristotle were introduced to teach children about people with disabilities. To introduce a character with autism at this time shows how prevalent a formerly rare disorder has become. While the intention to educate typical children about peers who have autism seems to have a noble motive, I hope that Julia is not simply a one-dimensional token character, the one who has autism.

Frankly, I’m a little disappointed that Sesame Street has given a girl whom they deem “amazing” a common (albeit beautiful) name. Unlike the other girls on Sesame Street, such as Zoe, Abby Cadabby, and Prairie Dawn, Julia doesn’t have a poetic name. Also, unlike her female peers who accessorize their outfits (especially Abby Caddabby who wears fairy wings), Julia dresses rather simply with no jewelry like Zoe wears. Perhaps this is to show her sensory issues; she must wear comfortable clothes that don’t bother her and no accessories that might distract her.

Apparently, Julia’s most understanding peer is Elmo, the cute and furry little red monster, who explains her autistic idiosyncrasies to other characters who misinterpret her impaired language and social skills and think she doesn’t like them. Elmo explains, “…Julia has autism. So she does things a little differently.” As if Elmo weren’t lovable enough, his concern for Julia makes him even more endearing. Perhaps Elmo is not just a sympathetic character, but actually an empathetic one. Maybe Julia isn’t the first Muppet with autism, after all. In fact, I think that Elmo was the first character with autism on Sesame Street because he displays the following traits common in autism:

Pronoun Reversal––To prevent confusing the first and second person pronouns I and you,  Elmo refers to himself in the third person, using he, him, and his, and more commonly just calling himself "Elmo," as in “’Elmo doesn’t think that’s true,’ Elmo says.”

Difficulty in Controlling Vocal Volume––Elmo has a great deal of trouble modulating his voice, talking entirely too loudly most of the time.

Poor Eye Contact and Hand Flapping––Although Elmo’s googly eyes make it difficult to discern his ability to make eye contact, he certainly exhibits the stereotypical arm flapping motions when he is excited.

Sensory Issues––Yet another indicator that Elmo has autism lies in his obvious need for sensory stimulation. The popular Tickle Me Elmo clearly craves tactile stimulation.
Obsessions and Compulsions-––In a You Tube clip, Elmo show classic autism behaviors by becoming obsessed with the "CLOSED" sign, repeating the word over and over and then showing the insistence upon following rules often seen in autism.

Putting aside the controversial aspects regarding Julia and my tongue-in-cheek assessment of Elmo, one of those who developed the character of Julia has a powerful motivation. Autism mom Leslie Kimmelman, who wrote the online storybook We Are Amazing that introduces Julia, explains when her son was diagnosed with autism more than twenty years ago, not much was known about autism. She comments that autism is “still a puzzle, and every child is affected differently.” Moreover, she explains, “So what’s the most important thing for people to know? We’re all different in some way or another––that’s what makes the world an interesting place.”

While eliminating stigmas, making people aware of autism, and helping them to understand why our children behave differently is important, we cannot lose sight of the ultimate goal: helping our children reach their full potential and searching for a cure for this disorder that attacks their nervous systems. It’s all well and good to call these children amazing, but I look forward to the day when Elmo doesn’t have to speak for Julia, and I don’t have to speak for Alex. Think what these curious and very smart children will be able to tell when they overcome the obstacles autism has presented in their lives—now that will truly be amazing!

“Everyone was gripped with great wonder and awe, and they praised God, exclaiming, “We have seen amazing things today!” Luke 5:26

Sunday, October 18, 2015

Insurance

 
Yesterday, Alex got one of those letters. Usually, I throw them away and don’t even bother to open them.  When they come from credit card companies who eagerly but unwittingly offer him a credit line, I shred them. Some of them claim to know that he surely has debt after college and probably needs to buy a car. I suppose that must be true for most young men his age. However, autism derailed his plans for college, and I, as his mother and personal assistant, handle all his correspondence. What should be a rite of passage for a twenty-three-year-old becomes a reminder that Alex’s life is not typical.

“Dear Alex, So how long has it been? Six months? A year? Three years?”

Actually, it’s been nearly twenty years since he received a diagnosis of autism, but I don’t think that’s what you’re asking him.

“When it comes to taking care of your home, you have enough to worry about. Mortgage payments, repairs, upgrades, cleaning the gutters––your home insurance is just as important to maintain. Over time, changes like additions, renovations, or even major purchases can impact your insurance needs. Alex, let’s review your policy together to make sure your coverage doesn’t have gaps.”

Don’t worry about Alex because he doesn’t worry about any of those things. Oh, and he doesn’t need homeowner’s insurance because he lives with his parents.

“It may take a disaster to show many homeowners just how big the gaps in their coverage are, and by then it’s too late. A fire, a violent storm, a thief in the night––major losses can mean thousands in out-of-pocket costs you didn’t plan on.”

Now you’re talking! We never planned on autism, and we’ve spent thousands of dollars in out-of-pocket costs. However, insurance refused to pay for most of those.
“Alex, call me or email me today so together, I can take a closer look at your policy­­––your coverage, limits, and deductibles––to help you choose the coverage you want to prepare for what might lie ahead. So call me today and let’s get started!”

That may be a problem. Alex isn’t allowed to use the phone because he thought it was entertaining to call 911 when he was younger to see what would happen. Also, we took away his email privileges as a nine-year-old when he started contacting automobile dealers about cars he liked through their online ads. As I explained to one car salesman who called asking for him, Alex was too young to drive. Of course, now he’s old enough, but he still can’t drive. Also, I’m wondering as his mother, how did you get his name and address in the first place?

Although these sales pitch letters from credit card companies and insurance companies remind me what Alex should be doing at his age and make me feel a bit wistful that he is not living the life he could be living because of autism, they also remind me that his life is blessedly simple. He is like the birds and the lilies of the field Jesus describes in the Gospels, never worrying about the things in everyday life that create stress for most people: paying off college loans, paying for cars and houses or making sure they are protected by insurance from disasters small and large that might threaten these possessions.

As Alex’s personal assistant who makes all of his phone calls and handles all of his correspondence, I am tempted to respond to the nice insurance agent who seems genuine in wanting to help ease his mind about the worries of the adult world he has recently entered.

Dear Angela, I’m not certain how you obtained Alex’s name and address, but I feel you should know that he is an adult with autism who does not have a car or a house to insure because he lacks the communication and social skills needed to hold a job. In fact, his language limitations prevent him from speaking with you directly, as he relies upon his dad and I to speak for him. Unfortunately, your company cannot provide the real coverage we need “to prepare for what might lie ahead.”

Thankfully, Alex has taught us that the only insurance we truly need in life is our faith. No matter what “disaster” comes in life––“a fire, a violent storm, a thief in the night” or even autism––God will always take care of us and provide us with what we need. Moreover, God offers “24/7 Protection” and “Personalized attention” as you claim to do, and He offers even greater savings than you tout.

While we appreciate your offer to help Alex, his dad and I can handle the everyday tasks like paying the bills and cleaning the gutters. The rest we entrust to God, whom Alex trusts wholeheartedly to see him through life and to ease any worries that might arise. Right now his biggest concern is whether the Chicago Cubs can beat the New York Mets so that they can finally go to the World Series. I doubt you can help him with that, so feel free to remove him from your mailing list. Sincerely, Alex’s mom

“That is why I tell you not to worry about everyday life––whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to Him than they are? Can all your worries add a single moment to your life?

…Look at the lilies of the field and how they grow. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, He will certainly care for you. Why do you have so little faith?

These things dominate the thoughts of the unbelievers, but your Heavenly Father already knows your needs. Seek the Kingdom of God above all else, and live righteously, and He will give you everything you need.” Matthew 6:25-28, 30, 32-33

Sunday, October 11, 2015

Satisfaction

 
A few weeks ago, Alex’s case manager told us that the State of Indiana was conducting surveys regarding the satisfaction of people who receive disability services. She explained that the survey was meant to be used in a variety of living situations—from group homes to supported living in apartments to living in the family home—which meant that some of the questions may not quite fit Alex’s situation. As his case manager, she informally interviewed him in person, and I was able to sit in on this session. We never know exactly what Alex is thinking because he doesn’t say a lot, but when he does offer his opinion, it’s usually interesting to hear his comments.

The first part of the survey dealt with his room and his privacy. For example, he was asked if he shared his room with anyone (which he doesn’t) and if his door were closed, whether people would knock before entering. Apparently, Alex recognizes that we respect his privacy by always knocking before entering his room because he answered that question with a strong affirmative. He was also asked about how much say he had in decorating his room, such as paint color, furniture arrangement, and bedding choices. He must think that he has more input than he actually does because he told her that he was able to make all of those choices for himself. While he has chosen the bedding (currently Chicago Cubs baseball sheets and comforter) and had input on the themes (baseball and NASCAR), I picked the paint color (basic antique white) and the arrangement of the furniture. Since his dad gets little say in those decisions, either, I have no problems with being assertive when it comes to home d├ęcor.

Another part of the survey addressed his access to technology and whether he needed permission to use the telephone, television, stereo, and computer. Because Alex shows good judgment in his use of devices for entertainment, we allow him to use them on his own. This is a far cry from the days when we hid the remote controls because he found it more entertaining to hurl them across the room than to use them for their intended purpose. One exception to this free access to technology is the phone, which we do not allow him to use on his own. After a few times of dialing 911 to see what would happen, Alex was banned from the phones so that he would not place false alarm calls. Even though he has not done this for many years, we still have memories of police showing up on our doorstep from his 911 experiment, and we keep the phones hidden or locked away to prevent him from trying  “the boy who cried wolf” scenario again.

A third aspect of the survey related to how many opportunities he has to go out in the community. Because Alex’s behavior has improved significantly, especially out in public, he gets to go someplace nearly every day. He was able to say that he goes to various sporting events, concerts, restaurants, parks, and stores. In fact, he was pretty enthusiastic talking about restaurants he’s frequented because he really likes dining out, which combines his love of food with his love of going places. Some more specific questions asked about the places where he shops and what kinds of things he buys for himself. The prior week, he had been several places to buy himself items, so he was able to explain with a little prompting from me that he’d bought books at Barnes and Noble, various foods at the grocery store, shirts at Kohl’s, and shaving cream at K-Mart.

Additionally, the survey asked about people with whom he interacts regularly, specifically those whom he’d seen in the past month. In addition to naming Ed and me, he included my parents, my siblings and their families (and named all of them individually), and his therapists. When he named these people who are important to him, he grinned broadly, as though thinking of them made him especially happy.

As he answered the various questions, Alex clearly showed an enthusiasm about his life. Even though autism makes his life more difficult than it should be and prevents him from participating in many activities young people his age enjoy, he is satisfied and doesn’t complain about what he’s missing. (Truthfully, he’ll occasionally whine to me that he can’t drive, but that’s really the only complaint he ever lodges.) Like the Apostle Paul, who states in Philippians 4:11, “…for I have learned to be content whatever the circumstances,” Alex has learned to be content despite the limitations autism places on his life. Instead of focusing on what he does not have or cannot do, he appreciates what he has and what he can do, and his positive outlook inspires me. Moreover, as his mom, all I want is for him to be happy, and knowing that Alex is content fills me with joy and gratitude.

“So I decided there is nothing better than to enjoy food and drink and to find satisfaction in work. Then I realized that these pleasures are from the hand of God.” Ecclesiastes 2:24

Sunday, October 4, 2015

Yes, I Am an Autism Mom

 
Of my various roles in life, none is more important to me than being an autism mom.  More specifically, being Alex’s mom takes precedence over everything in my life. After more than twenty years of being an autism mom, imagine my surprise to discover this week that the term “autism mom” apparently offends some people.

In her Huffington Post essay published this week, “Why I Call Myself an ‘Autism Mom,’” Shawna Wingert  explains that she, too, recently discovered that the term “autism mom” strongly offends some people. Although I wasn’t sure whom she was referencing, once I read scathing comments in response to her essay, I found the critics—adults who say they have autism and some who simply criticize everything parents with autism do and say.

Truly, I admire that Shawna Wingert earnestly tries to understand the point of view of those who criticize her for calling herself an autism mom, and she beautifully defends using that title. She explains, “I never want anyone to assume that I somehow think my son’s autism is about me.” Perhaps because I’ve been an autism mom longer than she has, I don’t feel the need to be as cordial to those who want to criticize autism moms. In fact, I want to defend her and all the other autism moms from those who would dare question our intentions and motives.

As she also notes, the phrase “soccer mom” commonly exists in our society, and no one seems upset by that terminology. Moreover, university bookstores stock t-shirts and sweatshirts to sell to students’ parents emblazoned with the name of their college followed by “Mom” or “Dad.” For most parents, our lives become entwined with our children’s, as do our identities. Hence, we become soccer moms, dance moms, Valpo moms, etc. We are proud of our children and involved in their lives and activities, and we enthusiastically take on the titles that describe our children. Autism moms are no different. Instead of taking our kids to practices and games, we take them to speech, occupational, and behavioral therapies.

Like Shawna Wingert and many others, I am an autism mom and will continue to use that title unabashedly. However, autism is not who I am, nor is it who Alex is. Autism is simply what occupies our time, just as soccer does for soccer families.

However, those who bash the term “autism mom” (and made their presence known through harsh comments responding to her essay) accuse us to trying to claim autism as our own, something we “have” that really “belongs” to our kids. As Shawna Wingert asserts, “Autism is his, and his alone. I do, however, think that parenting a child with autism is mine.” Indeed, parenting a child with autism is something we own, something that binds autism parents to understand each other, allowing us to empathize because we share situations typical parents do not.

Furthermore, some of the nasty responses to this essay suggest that autism moms are self-centered and like those with Munchausen Syndrome By Proxy, as though we enjoy having children with a disability because we seek attention ourselves. Believe me, if I could erase autism from our life, I would do it in a heartbeat. Honestly, I hate how hard autism has made life for Alex, and we have focused our efforts on making his life better and easier in spite of the havoc autism has wreaked on his body and mind. By sharing our experiences in my blog, I sincerely want other autism parents to know that they are not alone, and I also want to increase autism awareness for those who don’t know firsthand what autism parents are dealing with on a daily basis. Furthermore, I always strive to show God’s grace in our lives; my intention is to glorify God, not myself.

As an autism mom, I am grateful God has given me the organization needed to keep track of the three dozen pills we administer to Alex every day and all his various appointments and paperwork. As an autism mom, I’m appreciative that I have the energy needed to help Alex with his daily living skills and that I am healthy and strong so that I can take care of him. As an autism mom, I am thankful for the wonderful team of specialists who help Ed and me develop Alex’s skills and make him the best he can be. As an autism mom, I am fortunate to have family and friends who have prayed for us, supporting us in the difficult times and celebrating with us in the good times. As an autism mom, I am blessed that God has always taken care of us, showing us the paths we should take and keeping Alex safe from danger. As an autism mom, I continue to pray for healing so that Alex and others like him no longer have to struggle with autism, and so that we no longer need the term “autism mom” because we will simply be grateful moms instead.

“I will comfort you there in Jerusalem as a mother comforts her child.” Isaiah 66:13