Tuesday, June 9, 2015

The Toughest Thing About Having A Child With Autism? It Changes

Recently I have seen a couple of blogs that tried to pinpoint the one toughest thing about having a child with autism. I have never been able to write that one because for me the hardest thing changes. Some years it was one thing and some years another. On any given day I would probably give a different answer still.

Before the actual diagnosis, the hardest thing was trying to figure out what was going on. Then, at age two and a half the hardest part was explaining autism to others and trying to get them to accept the diagnosis. At that time I was still on the edge of denial myself. Then there were some really hard months of educating myself about autism, the best therapies, and reading everything I could get my hands on. I barely slept. The hardest part for a while was physical exhaustion.

Always crazy about hats
At age three and four the hardest parts were eliminating stereotypic behavior and resigning myself to having teachers and therapists involved in almost every waking minute of my son’s day. Oh, and the cost. The money we were always trying to find to pay for all the teachers and therapists. That was so very hard. Then there was the guilt. That was hard! My son has siblings. They lost a huge part of their mother to autism. I found the guilt a very heavy burden to bear. I could not be there for so many of the things my children needed me for because their brother needed me more.

At age five the hardest part of having a child with autism was the transition to public school. The early intervention had helped him so much but the special education department of our local public school, could not and would not do the things I thought they should for him. The transition was hard but the years after that were harder. Having your special needs child in the care of someone who you do not communicate well with is torturous.

When those hardships were finally resolved, the stereotypic behavior was once again the hardest part to deal with. Sometimes it seemed almost obsessive and compulsive. When we were successful with eliminating a targeted stereotypic behavior, sometimes it was replaced by something worse.

Some days if you asked me what the hardest part of having a child with autism is I would definitely answer, “watching him wrestle with his anxiety.” He is generally a pretty happy guy but it only takes a few seconds to change things for him. His worries are sometimes ridiculous to the rest of us but so real to him. It is so so hard watching him struggle. 

And always, ALWAYS, hanging over my head is my own anxiety: the worry about the future. What does the future hold for my son? What will happen to him when I am gone? Will there be a place for him in society? Will he be happy? What will become of my sweet Tate? Today, that is the hardest part of having a child with autism. But if you ask me tomorrow, the answer will probably be a different one.

Tate with his brothers, 2015
If you liked this post, you might also like these: Dear Autism and The Things Autism Has Taught Me

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