Monday, April 09, 2007

Raising An Autistic Child - Reality Check # 1

Raising an autistic child brings both great joy and great challenges, for the parents and for the child's brothers and sisters.

As a father nothing lifts my spirits more than arriving home after a tough day at work and seeing Conor's face pressed against the window waiting for Dad. I went to a local pub to watch the Toronto Maple Leafs - Montreal Canadiens hockey game two nights ago and returned after my sons were asleep. I found out the next day that Conor had tried to summon me home the evening before by asking Daddy, Daddy and when that didn't work taking his mom's hand and walking to the front door saying Harold Doherty, Harold Doherty. I can not tell you how much Conor strengthens his Dad every single day.

Yesterday was a big Dr. Seuss day for Conor and he pulled out one favorite after another to read -Cat in the Hat Comes Back, Hop on Pop, Oh Say Can You Say, I Can Read with My Eyes Shut. I can not describe the joy that I feel with every word that I hear Conor read.

Yesterday Conor wanted tickles. His laughter from playing tickle games is totally infectious. Conor also decided to lean back on the two rear legs of one of the kitchen chairs. When Dad told him "chair, floor" he put the chair fully on the floor on all four legs. Then he leaned back again. I walked around the corner of the kitchen entrance and Conor leaned back again. When I popped my head around the corner he laughed in suprise. We did that several times. Although I was trying to correct his behavior so the chair would not be ruined and he would not be hurt by falling back to the floor I could not help but laugh and take joy in this game of peek a boo, a game which Conor did not play at an age most children would have begun playing it.

Despite the great joy, the happiness and the pure all out fun that raising Conor brings there is very a dark side to the reality of autism and raising an autistic child. The courageous parents of the Autism Every Day video presented that reality for all the world to see - and judge. Two days ago while I waited with Conor at a local mall while his brother completed a transaction (involving trading in of old video games for a new WII Warrio game) Conor, understandably, had a small meltdown. The mall was crowded with people shopping while the stores were open on the long holiday weekend. Most people even encountering a tantrum are understanding but some are quick to judge even if they do not dare voice their judgment. One gentleman walked by with a disapproving looking back as he walked and while Conor engaged in a tantrum. For me, such uninformed judgmental behavior is not a big deal but it happens to many families with autistic children and it does wear down many families as a recurring stressful situation in their lives.

On the difficult side of raising a child with autism, or at least a child with severe or classic autism, is the self injury and injury to others that sometimes occurs. There are times when Conor's behavior is flat out dangerous. Yesterday Conor unexpectedly and with no provocation lashed out and hit his brother on the leg. His brother was not hurt but it was still an assault and Conor is growing bigger and stronger. A potentially more serious event occurred during that same drive when Conor threw an object past my ear while I was driving. That is part of the dark reality of autism for many families - the potential or risk or injury to family members including brothers and sisters. Yesterday's drive was a reality check. It is the type of reality you will not hear about from feel good about autism web sites, movies or television shows but it is real and it is a reality that parents and families of autistic children can not wish away or avoid.

Attached is a link to, and an excerpt from, an article by David Royko which describes some of these realities as he has experienced them.

What It's Really Like To Raise a Child with Autism

My son is 8 and big for his age, but he acts like a toddler -- tantrums and all.

By David Royko

I set my sights on the turn in the road up ahead, hoping Ben will somehow see the slight change of direction as a good place to turn around. He doesn't, and we don't. I become more and more concerned, finally turning back myself and saying, "Okay, Ben, I'm going back now. Bye-bye." Luckily, he follows me.

My good mood restored, we are about three minutes into our long haul back when the tantrum begins. Actually, the word "tantrum" doesn't really do justice to what's happening. Some behavioral specialists use the term "behavioral seizure," which, in its clinical cleanliness, also misses the mark. I have yet to come up with a phrase that captures it. It's one of those things where "ya hadda be there."; But you don't want to be.

Ben stops walking and starts hopping on one foot. He screams and hits himself with full force on the sides of his head. He bends forward at the waist, flings himself back up, screeches loudly, smashes himself in the face with his left hand, and then sobs, all in about five seconds. Uh-oh. I realize we have gone too far.

I grab him by the wrists and say, "Come on, Ben. We have to walk to the car. No hitting." He screams again. He shifts into dead weight and crumples to the ground. Now he is on all fours on the sidewalk, slapping himself in the face.

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