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Thursday, February 09, 2006

Discovering the Ability in Disability

Having a child with disabilities is hard work. Having three...the word "exponential" just doesn't seem to cover it.

I'm told I handle it well. Like most parents I often wonder if this is true. There are times when I feel so overwhelmed that I just can't help but wonder how I'm going to make it through the day. There are other times when I've no doubt I'm doing well; my children are reasonably happy, reasonably healthy, very exuberant individuals who are thriving each in their own way.

Still, there are a few things that really get to me. Line's like the one in this article: "A child with autism is unable to relate to or communicate with others. For a parent, the diagnosis is devastating."
(emphasis added)

I've heard that many times. I've been told that many times. Some people have even gone so far as to tell me that I'm in denial because I DON'T feel devastated!

Don't get me wrong, finding out your child has autism is very unsettling, very upsetting. It's a very emotional, heart-wrenching experience. Trust me, I know. I've gone through it twice already, and am in the very slow process of going through it a third time.

However, when people constantly tell you how devastated you should feel, when you buy into that, when you let yourself grieve continuously over your fate or the fate of your child...you lose sight of something very important, absolutely essential in fact.

Autism is NOT an end. Your child's life, your child's future does NOT end just because he or she is diagnosed with autism. Your child's future is in your hands, as it always was, and you as a parent have a responsibility to maintain your vision for your child's future. That vision may have to change, as it undoubtedly would as your child got older, but that change does NOT have to be seen as a negative one.

As each of my children were born my husband and I had distinct hopes for them. Hopes that they would grow, that they would learn, that they would independently seek ways to make this world a better place. We had visions of marriages and grandchildren. We envisioned them going to college or learning their own trade. We wanted a family owned business that our children, once they were older, would be able to work in and learn in, perhaps taking it over themselves one day.

All this happy idealism came to a screeching halt during a long dinner filled with extended family. My sister-in-law was getting married. My husband's family had gathered together at a restaurant, amicably enjoying each other's company. As for myself, I was miserable. Like everyone else with kids, I brought my two, little children with me. Unlike everyone else's kids, my children wouldn't sit at the table, they wouldn't eat, they didn't want to have anything to do with all those "strangers." It was a very upsetting experience, and despite having a table full of people who cared about us, including my mother who repeatedly took one or the other of my children outside to calm them down for me, I felt totally alone.

One time during this seemingly unending meal, my mother took my oldest child, Willy, outside, because he was throwing yet another tantrum and disturbing the meal for everyone else. My husband's grandmother (who'd raised three children and was an experienced nurse) urged me to follow them out with her. For a long moment we were both quiet. She watched Willy scream at my mother and noted my exhaustion. Then, she said it.

"It's not supposed to be this hard, Stephanie. There's something wrong. We need to get this checked out."

All the hurt, all the pain, all the confusion came pouring out and I burst into tears, which is indeed a rare occurrence for me. She'd said what I both longed and dreaded to hear...it wasn't my fault, I wasn't a bad parent, there was something wrong that was beyond the expectations of normal parenting. From that moment on I was determined to help my child (this was, of course, before I knew Willy wasn't our only child with developmental disabilities) recover from whatever was making him so uncontrollable and such disagreeable company.

It wasn't an easy battle, and we're nowhere near through all the obstacles we face, but we've succeeded to a great degree. We got the help we needed and our children, Willy especially, are making great progress.

However, it took one more catalyst before I made the firm, irrevocable decision to turn my back on the "autism is devastating" mentality.

In the process of obtaining a diagnosis for Willy we went to a developmental clinic near our home. There they not only confirmed that Willy's diagnosis of autism was accurate, but gave him a prognosis, which the first doctor we saw wasn't willing to do. We were told he would never really talk. He would never be able to learn with his peers. He would never practice pretend play. Basically, they told us he didn't have any hope of living a normal, productive life. Furthermore, because we had my step-son to care for, along with our other child, Alex, and a fourth on the way, Ben, we were strongly encouraged to forego developing a treatment plan and simply to place Willy in an institution.

My husband and I gathered our son up, finished up the paperwork that they required, declined scheduling any further appointments and left. We've not been back. That was two years ago.

Now, Willy is happily attending first grade with his peers. He has lots of friends. He talks up a storm and can read and spell at his grade level. And he plays marvelously, with plenty of pretend play mixed in with his functional play. Yes, he needs a one-on-one aide to get through the rigors of the school routine. He still throws an occasional tantrum. He can't quite comprehend the difference between emotions yet. He still needs therapy and specialized intervention. But Willy is a success story! He's making progress, keeping up with kids his own age, and is actually participating productively in our society. He's able to do a lot of things, many things we were told by the "specialists" that he simply would never be able to do. He's got a ways to go, but I know, as long as we focus on what Willy is able to do now and what he'll be able to do in the future, our dreams for Willy will come true...and nobody is going to tell me I should be devastated!


At 2/09/2006 2:50 PM, Blogger Lisa Renee said...

It's because you didn't believe it that things are not that way.

I've basically gone thru the same thing as far as what the doctors have told me were possible.

Had they been right? I wouldn't have five children, and I would have been dead years ago. I don't often go into all the details of what I've been thru, but when I do I get almost a similar reaction as "how did I manage to get thru that".

I often wonder...was there a choice? Sure okay I could have given up but that doesn't seem like much of an option.

I have a very good friend who's daughter is 13 and has autism. Trinity has managed to do many of the things that those "specialists" said she would never do. Probably because her mother and father like you and your husband? Didn't believe them....Even if they would have been right? Everyone has a purpose here in life...

At 2/09/2006 3:34 PM, Blogger Stephanie said...

See here and I was hoping to fix it BEFORE anyone read it...just goes to show, spell-check BEFORE you hit post!

I do believe you're right, Lisa, that what you choose to believe makes a difference in how well you overcome life's obstacles. Which is one of the reasons I felt this an important topic to blog about.

It is my hope that through telling my story I can encourage other parents (and people in general) to take what "specialists" say for what it's worth. Their opinions can be valuable, but they are merely opinions.

People need to know that there are successes out there and that you don't have to be a do-it-yourself take-on-the-world type to achieve those kinds of successes. Sometimes all it takes is believing in yourself or your child.

You are certainly a success story in your own right and I'm very glad to know you!

At 2/09/2006 4:34 PM, Blogger Lisa Renee said...

That feeling is mutual Stephanie, and I think that is one of the reasons why we "clicked". While we of course are not always going to agree on every topic, we share some very important basic beliefs and attitudes.

It's gotten us both this far and will get us both farther than someone who spends their time being "devistated". Life is too short for that.


At 2/09/2006 4:42 PM, Blogger Lisa Renee said...

I'd have to add I have to thank my great-grandmother for my attitude. She's the one who would listen to me cry and rail about how unfair life was, hand me a few tissues then look at me and ask "Are you done now?" "Yes" I'd sniffle, then she'd look at me and say "Well are you going to try to change it? Deal with it? or Forget it?"

Most times it would end up being something not important enough to try to change or to really have to deal with, but she kept things in perspective for me. I'm lucky she was in my life. Life isn't always going to be fair or even easy, but those moments like I'm sure how you felt when Willy does something that "they" said he couldn't do, make up for it.

I tell myself that if I hadn't have gone thru all that I have? I wouldn't be the same person that I am now, and I know as I write this? My great-grandmother is probably looking down, nodding her head.


At 2/09/2006 5:10 PM, Blogger Stephanie said...

I know EXACTLY what you mean! I grinned just thinking about those moments of personal triumph!

For me, the thing is remembering to celebrate each such triumph, no matter how small it might seem to someone else.

Like when Alex said, "play-doh, play-doh, play-doh." From the outside that seems insignificant. A five-year-old identifying the toy he's playing with and saying is no big deal, but for Alex to say anything is a big deal...so we celebrate!

At 2/09/2006 6:07 PM, Blogger Lisa Renee said...

Made me smile too, and I wasn't even there, I know that feeling. I think part of it is if life has not been easy you tend to not take it for granted.

There are moments I feel bad that I haven't been able to give my kids some of the things their peers have but then I stop and remember the important things that they did get. Things that are priceless...

At 2/09/2006 9:24 PM, Blogger Stephanie said...

Priceless gifts are the best kind!

Well, except maybe Monster Rancher 2. ;-)

At 2/10/2006 1:53 PM, Blogger Lisa Renee said...

lol :-)

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