Thursday, July 03, 2008

Autistic Children Grow Up

Autistic children grow up.

They get taller, bigger, stronger. And like other parents we must adapt as they do, both to continue to enjoy their presence in our lives and to help them develop to their fullest potential. For some parents of autistic children the physical growth of their children also represents a point of departure; they must part company with their autistic children whose behavioral challeges can no longer be accommodated coming from the large, powerful frame of an adult. The brutal reality is that some parents (particularly mothers) and siblings are physically attacked by the autistic children, brother or sister for whom they care so deeply.

I have read on the internet heart wrenching stories of parents who have had to make the agonizing decision to send their autistic child/adult to live in residential or institutional care. As a lawyer I have provided some pro bono legal services to parents struggling with the challenges of caring for autistic children who have been aggressive to them and had become a risk to family members. Such realities are not the usual autism fare of CNN, New York Magazine or Good Morning America. They are real none the less for the parents who care for these children and mourn, (yes Jim Sinclair MOURN), the premature loss of their children.

Above are pictures of our son Conor, 12, with his mother, Heather (also author of Goody Bledsoe, see right side of page). Conor, diagnosed with Autistic Disorder, is now slightly taller than his mother. He grew like a weed this past year, with the usual changes that accompany that stage of life. When Conor is outside the house by himself, in the yard or on one of the steps, we check constantly. Sometimes visually, sometimes by asking him to say "Hi". On one such occasion I was startled by the deep man's voice that answered. It was Conor's voice, no longer the voice of a boy.

Conor is aggressive on occasion. We have "managed" the aggressive aspects of his behavior, thanks in large part to Applied Behavior Analysis therapy which has also helped Conor with so many areas of life. But there are still times when it is difficult. And we know that a day will likely be coming when we will no longer be able to have him with us in our home. As Conor grows bigger and stronger and we grow older and weaker.

In the meantime though we enjoy Conor and all that he has brought to our lives. We do not subscribe to the misguided "autism is beautiful" ideology that urges people to find joy in their child's neurological disorder. We accept the realities of Conor's autism, we face those realities and we try to do something about them, to help Conor overcome them to the fullest extent possible. We do so with great joy, the joy of Conor, a fun loving, affectionate but challenging blessing in our lives. For as long as we can.


Anonymous said...

Very sweet picture!

There's nothing better than getting those sweet hugs & kisses!:-)

Happy Belated Birthday!

Bonnie said...

G is turning 13 next week. He's as tall as I am, so it does make some aspects of life much more challenging. Sometimes it drives me crazy the intense focus on early intervention. Kids can stil learn and grow after the age of five...

Marni Wachs said...

Your blog entry was very poignant. It made me happy and sad for you and your family, and for myself and our family as well. The physical signs of growth and progress which would normally be noted with optimism, are also a strong (throat lump) reminder of future decisions...and all the fears that come with it.

Back to living in the now.

Rambling Woods said...

I wish I had had some realistic parents such as you and your wife the years I was teaching. My specialty is mental retardation, but the same harsh realities may be true. So many parents are told to find the "meaning", "the joy" or other platitudes of one facing adversity. The truth is that a child with special needs is a challenge, a loving challenge, but a challenge non the less. I hope there is more good research, more education, more acceptance, more money..all toward autism...