March was Disabilities Awareness Month and April is Autism Awareness Month. Today is World Autism Awareness Day, Light it Up Blue. If you read my “About” page, then you know my son Wendell has Intellectual and Developmental Disabilities and Autism. So here and on Facebook, I’m sharing my experiences and feelings about what these conditions mean to me. Not what they mean to someone else because I can not speak for anyone but myself.
I am not special because I have a son with disabilities. I do not expect pity for how our lives are effected by Wendell’s disabilities, or praise for doing what I think anyone in my position would do. I am dumbfounded when parents tell me they couldn’t do what I do. Sure, some days are more difficult than others, but really no different than a family with typically developing kids would experience. We share the same emotions of joy, frustration, accomplishment, dejection, agitation exhaustion; only for different reasons. Some days I’m strong, but on days when I am not, I have DJ and my mom to back me up.
Additionally, I have wonderful friends who provide words of encouragement when I am frazzled. They give the praise to Wendell (not to me) when we see results at something we’ve worked hard to achieve. They laugh with us at his silliness (Hats, Hats, TOO MANY Hats!), and are saddened by his set backs. I thank my friends, RT, BT, DLP, BA, SAR, CK, JC, DC, JW, PEF, MAT, LBH, DSR, TB, and DTD, just to name a few.
Disabilities come in many forms; physical, intellectual, genetic, accidental. Wendell was born 4 weeks premature and only weighed 3 pounds 14 ounces. He spent 4 weeks in the NICU, and came home with a feeding tube and heart monitor. I won’t go into all his issues, but basically, his dad and I were told he would catch up by the time he was 2. Didn’t happen.
Somewhere along the line, his pediatrician sent me an essay, “Welcome to Holland” by Emily Perl Kingsley, written in 1987. Looking back, I think it was her way of telling me, without “telling” me, that Wendell would continue to have challenges and I should prepare myself differently than I had planned. If you’ve never read it, see my page called Inspiration.
Wendell was delayed on all of his childhood milestones; he sat independently at 11 months, he walked at 27 months. I don’t remember first words or sentences, other than they weren’t on schedule. Special Ed classes started at age 3, that was the first time anyone ever used to words “Mental Retardation”, and I was devastated. More on that subject later. Toilet training wasn’t completed until he was 8 (yuck). And, he was tube fed until just before his 10th birthday. We spent a month at the Penn State Hershey Feeding Clinic where he learned to eat. This is still a work in progress, and yes, more on that subject later.
The Autism diagnosis came after we moved to Pennsylvania, Wendell was about 6. His level of Autism is moderate, which means his social skills are impaired, he perseverates, and has behavioral issues. These issues, in combination with his intellectual and developmental disabilities are what make Wendell unique. I will share more of our challenges and triumphs over the month. To learn more about Autism, visit Austism-Society.org, Autismspeaks.org, or Autismnow.org. To learn about Intellectual and Developmental Disabilities, visit thearc.org. Thanks.