Tag Archives: Partners in Policymaking

The Journey: ABA and How I Feel about It Now

[This post is the first in a series about looking back on aspects of my journey as an autism parent and how I feel about it now that my son is 20 years old.]

One thing you’ll find with most parents of children who have autism is that they always remember D-Day. The day of their child’s diagnosis. The day everything changed.

Some parents are devastated; they grieve for the future they envisioned for their child, for the parenting experience they expected to have. How could this happen to me? To us? This is so wrong!

Some parents are filled with shock and fear – what does this mean? What are they supposed to do? What’s the next step? What does this mean for their child’s future? They feel a sense of dread and despair for the journey ahead of them.

Some are angry. Who does this doctor think she is? She doesn’t know my child. My child shows affection! He laughs! How dare this doctor say he has autism? I know my child better than any professional could.

Some, surprisingly, feel relief. They knew something was different about their child. They knew their child should have been talking by now. They knew he wasn’t just a “late bloomer.” They knew their child wouldn’t be shrieking at any outing in the community unless there was something going on with him.

And, of course, many parents feel a combination of these reactions and emotions. Me? I felt strangely relieved, but also shocked and fearful of the future. In 1997, the year of our D-Day, autism was still considered by some in the medical field to be the death sentence of developmental disabilities. There wasn’t much information out there. No internet, few books. Somehow I found out about ABA and learned that there was a local center that offered ABA-based therapy, without the use of aversives. At that time there were only four children in the program, and my son became one of them.

From the age of 3 to 6 years, he received approximately 25 hours a week of therapy, including two home visits every week. He was taught to communicate using PECS – Picture Exchange Communication System – with cue cards and schedules. He also received speech and occupational therapy. When he responded to the behavior therapy by following instructions and interacting with the therapist, he received a gummy bear or some other type of treat. And after over two years of this intensive therapy, he began stringing together three words of spontaneous speech. He was five and a half, and I had some hope.

Over the course of many years, he progressed more than I had ever dared to dream. I felt certain it was because of the early intervention therapy he had received. I recommended ABA-based therapy to other parents I met. I believed that it saved my son. He wasn’t cured, and I never expected that, or even hoped for it. But I had wanted him to be able to interact with us and navigate this world as comfortably as he could.

At some point, probably when I participated in the Partners in Policymaking program last year, I became aware of the concept that maybe he would have been okay on his own, without therapy. Maybe he hadn’t needed to lose 25 hours a week of his childhood and been made to feel like there was something wrong with him. Maybe he would have learned to speak on his own timeline, might have naturally developed a way to filter all the sensory input that agonized him. Maybe with time he would have been fine on his own, and he could have just been allowed to be a little kid, unfettered by sitting in a chair across from a therapist five days a week. Maybe he could have had a “normal” childhood.

And I started to feel bad about the therapy I had so exuberantly lauded. I started to think that my son, with all the gummy bears and goldfish crackers he was rewarded with, had been trained like a seal. Or a lab rat. How could I have thought that was how to teach him? How could I have thought that was beneficial for him?

Either way, there’s no way of knowing if it was the therapy or if it was just the passing of time. And instead of beating myself up over something I will never know, I have come to accept the belief that it was both. It was the therapy and it was the passing of time. But it was also my son’s determination, my belief and hope, our connection, and our love. It was not one thing; it was everything.

[Image courtesy of Keep Calm Studio]

Are Special Needs Actually Special?

spe·cial

adjective \ˈspe-shəl\

: of a particular kind

: peculiar to a particular person, thing, or purpose

: unusual, exceptional

: especially important or loved

–          New American Webster Dictionary

Back in the days when I had time to write more than one post a month and actually read other peoples’ blogs, I came across somebody’s post suggesting (boldly, I thought, and perhaps rashly) that special needs aren’t special. And I couldn’t figure out if I was offended or simply indignant, but I do remember thinking, That’s ridiculous. Of course special needs are special! My son needed full-time, one-on-one assistance in the classroom – that’s a special need! For years my son needed laminated cue cards in order to communicate – that’s a special need! At age 19, he needs me to keep track of all of his appointments, finances, medication, and hygiene – special needs, I tell you. I could not see how anyone would think otherwise.

But due to the fact that my son, who has autism, among other disorders, recently said this to me: “I don’t like it when you say ‘special needs’ or ‘developmental disabilities’ about me. It makes me feel like I’m incapable of doing things,” I have spent the last few months trying to find an acceptable alternative (since he vetoed ‘differently abled’ and asked, “Why is it so important to you?” when I pressed for his preference).

And so I refrained from saying “special needs” in his presence even though I continued to use it when he was not around. In all honesty, I’ve never really liked it. After all, “our” kids are not any more special than anyone else’s kids, or our other children who don’t have disabilities, for that matter. But some of our kids’ needs are special. Of that I was certain.

And then last month I started attending the Partners in Policymaking program. A 6-month leadership training program for adults with various types of disabilities and parents of children with disabilities, it exists in 46 states. Partners in Policymaking makes participants better advocates for themselves, their family members, and the greater disability community. I highly recommend that everyone should attend it at any point in their parenting journey. Why? It will rock your world. It will turn everything you ever thought about disabilities and “special needs” upside down, no matter how many rodeos you’ve been to.

So why aren’t special needs special? Because we all have the same needs. I know this is revolutionary, so bear with me. We all need to:

-Be loved and appreciated for who we are
-Be safe, well, and comfortable
-Communicate
-Get around
-Have autonomy
-Have friends
-Have a creative outlet

Some of us can meet these needs without any assistance. And some of us need support to have these needs met. But that doesn’t make those needs special – because they are the same for all of us. Some children (or adults) need assistance so that they are safe (tracking devices, locks and gates), comfortable (weighted blankets, sound protection, head support, etc.). Some need support with communicating (voice devices, iPads with apps, PECS cards). Some require a power chair, medical transportation, or other assistance with getting around. But the need is to get around, the need is to communicate, or be safe, and those needs are not special. We all need them, unless we want to say that we all have special needs.

My son requires support in meeting several different needs, but his needs are not special. I have the same needs! I just don’t need assistance in meeting them (most of the time). It may have taken me a while to get to this point, a point where I’m ready to embrace an idea that just a few years ago made no sense to me at all, but I’m here. And I’m here because my son told me, in no uncertain terms, that it was time to change my entire way of looking at his needs: “It makes me feel like I’m incapable of doing things.”

I’ve been in the parenting trenches a while now, feeling like I’ve earned some kind of a badge, like I’ve got this. But the old adage is true – I’m learning that I still have a lot to learn. And I probably have at least a few more rodeos, too.

 

Image courtesy of Wireandtwine.com