Navigating the Developmental Disability World

Understanding Autism and other Developmental Disabilities

If you’re reading this, chances are good you are close to an individual who either has a developmental disability or you suspect may have one. Recognizing and responding to developmental disabilities takes patience, creativity, and willingness to try novel approaches. If you are a parent caring for someone with a DD child – and are unfamiliar with this world – you probably have a lot of questions.

  • Why doesn’t my child respond to situations like others?
  • Why doesn’t my child show interest in the activities others enjoy?
  • Why doesn’t my child want to be held? Or, why does my child hug everyone all the time?
  • Why does my child require so much repetition?
  • Why doesn’t my child smile or talk?

Everyone is different and everyone’s list of questions will vary. But – the number one question I had when I was starting to realize that I needed extra support for my daughter was:

What can I do to improve my daughter’s life as well as everyone’s in this household?

As someone who had virtually no experience with mental and developmental differences, I got quite an education when my daughter was born – and didn’t react to anything in a predictable way. The parenting styles my husband and I used on her three older siblings didn’t work on her. Getting her to answer a question was impossible and painful. Yet, we persisted in applying all the typical rewards and punishments to try to influence the outcome we wanted. They didn’t matter. Whether it was a gold star or a time out – she didn’t care. As the school years progressed, she was put into a resource room with others who displayed learning differences. She was put on an IEP (Individual Education Plan). I had no idea what this resource room was for and what and IEP did.

Family members trying to be helpful told us she’d grow out of it. When I suspected autism, I was told “no way; she looks normal.” When I took her to a few different psychologists, I got a few different evaluations. When I spoke with her teachers, they told me she’d be lucky to hit a fourth-grade reading level and that I should look into other programs for her – possibly for her entire life. Some doctors tried prescribing medications to help her moods. She refused to take them.

What she did do was draw. And color. And paint. And cut up papers and towels and blankets and tape them into sculptures. As I noticed the things that triggered a sense of calm and accomplishment for her, I learned that the more of these I could provide, the better off we all were.

Let me cut to the chase. There is no silver bullet. There are no magic formulas. But – there are plenty of resources for people who know what questions to ask and where to look – neither of which were apparent to me as my daughter was growing up. I started NPower to share what I’ve learned with others – and to chip away at the ridiculous stigma that people with learning differences should be cured. They are who they are – and the sole onus shouldn’t be put upon them to adjust to fit into our world. But, help is available so that parents can encourage their children with differences to make the most of their potential and enjoy their lives.

As it turned out, my daughter got a diagnosis of autism when she was in middle school. This formality opened up several doors for her at school. She was able to get more resources and help. She qualified for job coaching through DODD. We explored every option that was presented and chose the ones that made the most sense. Fortunately, we had a good school system and teachers who cared.

Today, she’s 21 and is reading at an eighth-grade level, which we were told would never happen. (She’s reading Harry Potter now!) She’s got tons of gumption, works two part-time jobs, takes long runs and creates intricate, colorful art. She qualifies for assistance through our county DD Board – and their services have enriched her life far beyond what I would have been able to do without the diagnosis and supports through the school.

I realize my story is only one story. Other scenarios require different approaches and sets of expectations. But, the one thing all families affected by a developmental disability share is a sense of uncertainty. Improving her life remains a constant, and I’m still asking: What can I do to improve my child’s life as well as everyone’s in this household? My goal is to keep learning and adapting – making every day the best it can be.

Future blog posts will address these questions and share ideas on how to navigate the DD world.