Sunday, September 28, 2008

The Question...(every Mother who has a Child with Autism Asks)


So, as most of you know who are reading my blog (hey...does anyone really read this?) I probably don't need to state the fact that my 8 year old son has autism. But if you are new, you might not know, so now you do!

Jonathan has autism. Though most people who meet him would never suspect. He is social and likes people. Upon first encounter, you might think he was just a typical kid with ADHD tendencies.

I credit LI, EI and PI for the radical changes in my son (The Lord's Intervention, Early Intervention and Parental Intervention) It has, without a doubt, been a team of people who have made a difference in my son's life.

But there are still *things*. He gets stuck. Doesn't want to move to a different activity or topic. Or his brain is so focused on something, he will argue his point as if his life (or yours!)depended on it. Or sometimes, he presses a "mute" button in his mind, and he will not hear you, respond to you, or even acknowledge your presence.

He can appear to be "disobedient" but honestly, most of the time the non-compliance has roots in the fact he is autistic.

This is not to justify or excuse, rather to understand.

These past few weeks, in particular, have been filled with one outburst after another. I have put my parental abilities in the witness stand, with my mind becoming a very harsh judge, while my heart is feeling the scars of the overwhelmingly "guilty" verdict. Somewhere I must have done something wrong for my child to be so _______________. (Feel free to fill in the blank with any inappropriate things we deem unacceptable in childhood behavior) So part of the problem is the fact that my son appears to be so NORMAL in looks, that people forget he is autistic.

This has become a blessing and a curse. Because without a visual reminder of my son's disability, one tends to forget he has one!

In frustration I wrote this the other day. I posted it on a few message boards. I've received many comments from other parents of children with autism. They have expressed that I have put into words what they've been feeling for years. So now, I share with you:

If Jonathan were blind, would I expect him to see?
No, I'd give him alternate ways to "see" his world. Let him touch and smell. Describe it to him. Would I apologize for him? (Can you imagine..."Oh please forgive my son for his blindness"??)

If Jonathan were deaf, would I expect him to hear?
No, but I'd provide hearing aids and therapies for him to be able to function as best as he could. I would learn to be conversational in sign language so I could understand and know my son.

If Jonathan was disabled in such a way as he could not walk, would I be angry at him that he was in a wheel chair?
No. I think I would see the wheelchair as the best way for my child to enjoy life, and be able to participate.

Why then is it so hard for me to accept the behavior issues that comes with autism? Why do I expect my son to "be like the other kids" in regards to social issues? Why do I expect him to THINK and ACT like the NT Kids? Why does it embarrass and humiliate me when he doesn't?

Would teachers be saying, (if my son was blind) "Oh, gee, you're son couldn't identify his colors AGAIN today..."
Or (if my son was deaf) "No matter how many times we play the song, Jonathan refuses to participate in music. He just will not sing, not ever"
Or (if my son was in a wheel chair) "Once again your son would not walk to the cafeteria. I mean...all the other kids his age are able to walk and carry their own trays. But he just stays in his chair..."

But I am forced to hear about all the behavior issues, almost daily, and then feel like for some reason I need to do better, discipline more, talk more, find the magic wand that will "fix" him.

Why is it different for my son, than a child who is visually or hearing or
physically impaired ?

I am pondering...

Knowing God will show me the answers I remain...
Donna

8 comments:

Angie said...

This is very insightful. I think you've nailed it right on the head...

Hilah said...

You opened my eyes with this post.

Anonymous said...

Why do you expect your son to "be like the others" in regard to social issues? The answer is simple. That is what society wants YOU to be like. Watch out if you should dare to think differently than the standards set by NTs. If you showed signs of non-conformity, you might end up with a not-so-nice label.

I don't know if your son might be more accurately described with an Asperger's Syndrome label (which isn't 'bad' or a 'defect'). If so, the definition for Aspergers should strictly be, "People who think differently."

Remember ---> "Blessed is the man that walketh not in the counsel of the ungodly."

The counsel of the Godly would be for you to love your son just the way God made him and trust God that He knows what He is doing.

What humanists call a 'disorder' might not be what God would call it.

The New Teacher on the Block said...

Thanks for reading my blog. I have been lucky enough to work with children with autism for 4 years and they continue to amaze me everyday.
This post is very insightful...I wish more people saw the world as you do and at least tried to understand children with autism. Many of the people who work at my school refer to my students as "those autism kids" and say things like "I don't know why they can't just act right." I pray that more people will come to the kind of understanding you (as a mother, of course) can have. As you point out, even though it is such a frustrating disorder to deal with at times, we always have to keep in mind that we would grant understanding to people with other disabilities and must strive to give the same to children with autism!

MiSScNeLLY said...

Wow! I don't know how you found me, but I am glad that you did. This post is thought provoking.

The Ashes said...

Hi Donna! Thanks for stopping by my blog and leaving a comment. We are currently going through the process to have my son, Caleb, evaluated. It's been a hard journey, as I'm sure you understand. We're in the process of moving to Mississippi...next week actually, so I'm trying to get things set up to have him tested or evaluated with a psychiatrist who takes our insurance. So great to meet a fellow Christian as well!!

365 Blessings said...

Beautiful!

Melinda said...

POWERFUL post and I can again relate to it in so many ways