May 13, 2007

What They Should Have Mentioned

Triumphs over autism ease a mother's sense of loss

"If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome."
-- Anne Dudley Bradstreet

I remember the day of my son's diagnosis of autism as if it were yesterday. The tone of the doctor's voice, the silence in the room, the words "lifelong disability, no cure, I'm sorry" still sting when I allow myself to reflect on that day.

But I have paused on occasions too numerous to count and think, "Someone should've mentioned that this would be part of the package" when my child was diagnosed with autism.

Someone forgot to mention that I would listen to my child's simple utterances or attempted approximations as if he were a world leader giving the speech of a lifetime. I could never have imagined the worth of a single word despite the fact that I may never hear it again.

Someone forgot to mention that when my son was finally potty trained at age 9 there would be few people who would understand the significance of such an accomplishment and even fewer with whom I could actually share it. Accomplishments of any size, their true worth known only to me, would bring quiet celebrations between my son and me.

Someone should've mentioned that autism is messy! That wallpaper's meant to be shredded, bathrooms are designed to be flooded, walls are bare in order to smear stuff on them, washable paint really isn't and that more food will actually be crushed and dropped than eaten.

I wish someone would've mentioned that autism is extremely expensive! Doctors, therapists, medications, supplements, conferences and sensory equipment are only the tip of the iceberg. I could not have guessed that it would be my child's disability that allowed people to cross our path in life that otherwise would not have and that such people would respond to a child in need.

Someone should have mentioned that each time your child with autism initiates or engages in a reciprocal hug, that feeling that you had when you held them for the first time comes back time and time again.

What they forgot to mention the day my son was diagnosed with autism is that the triumphs over this disability would far outweigh the tears, that laughter would eventually ease the sense of loss and that sheer faith would allow me and millions of other parents to fall into bed exhausted each night only to get up the next day eager to discover what else they forgot to mention.


mcewen said...

I suspect that there are a lot more of us than we know about. Apart from anything else only a tiny % blog. I wonder how we can find everyone?
Best wishes and Happy Mother's Day

Carol said...

Happy Mother's Day!

By the time my son was diagnosed at 2.5 years old, my husband and I had already known for a while what the developmental ped was going to say. So I couldn't help but smile when he finally said "autism". I was just so relived that we finally had the diagnosis and could begin getting Adrian services. He thought I was nuts and said, "I'm not sure you understand, there's no cure, this is lifelong...." I told him I understood (still smiling) and I left him scratching his head at my 'odd' reaction.

A representative from early intervention was at that appointment with me and as we walked out she said she'd never seen anyone take the news so well. I told her, "Autism isn't something my son has, it's part of who he is. He wouldn't be the same boy I know and love without it."

Eight years later, I still feel that way ;)

Nell said...

Happy Mother's Day to you :)

We're going in for an eval on Friday and the blogs and moms I've met so far have been nothing short of amazing, supportive, and interesting to learn from.

I've learned from you and your blog and wanted to let you know :)

Clay said...

"I was just so relived that we finally had the diagnosis and could begin getting Adrian services."

I'm with you on that. We went for several years not knowing why Edith was behaving the way she was, constantly being ignored by her neurologists. When she finally received the diagnosis at age 4 it was a relief to finally know what was going on and to be able to start getting help for her.

""Autism isn't something my son has, it's part of who he is."

We feel the same way about Edith.