Tuesday, September 15, 2009

Autism - Part 1

Taking life for granted – how often do we do this? Over the past twelve and half years, I have learned a lot about small victories and taking things for granted.

Twelve and half years ago my son was born. By the time he was three months old, I knew there was a problem. There were no smiles, no coos, and no eye contact. My son was in a very different world than I was and it tore me apart. As time went by, it occurred to me that there was something wrong with him and I didn’t know how to go about finding out what.

A friend of mine who has a Down’s syndrome son encouraged me to call Early Invention myself and get him evaluated. By the time he was thirteen months old, my son had his evaluation and was found to have the verbal skills of a three-month old. Validation. Validation that yes, my instincts were right. Validation that someone heard me and really listened.

Over the first year of Early Invention, we taught my son sign language. I spent every spare moment I had learning about nonverbal children and sensory issues. As the speech pathologist worked more and more with my son, the word autism came out. I researched and researched. A name for the problem – was it possible?

Autism is such a hard spectrum to diagnosis as every case is different. A neurological disorder from birth affecting speech, sensory, and social skills in these children, yet affecting each one differently. For my son, he was completely nonverbal to over the age of three and his sensory issues were plentiful. Social skills that come naturally to more children had to be grilled into him before he grasped conceptions of acknowledging someone speaking to him, sharing and interacting with his siblings and friends.

The road was set to be a long and hard one. Join me in walking through my son’s journey in coping with Autism over the next few days.


Heather Howland said...

I'm visiting via your post on RWAOL, but wanted to say I understand. Both of my sons are autistic. I'll be watching for your next couple blogs. Even with the early intervention programs and special schools, it's so easy to feel alone.

Emma Leigh said...

Thanks for stopping by, Heather. It certainly can be a very lonely journey, even if you have tons of supportive family around you.

Denise said...

Thanks for posting something so personal that many people experience.

Looking forward to your other posts.

Anonymous said...

My son was not dianosed with Autism but does have the sensory disorders (not diagnosed until he was 4). He didn't sleep the night until he was 5 and either my husband or I had to sleep with him because he needed/craved the weight of our arm around him which he would rub until he slept. As sad as it is, it's nice when you actually have a diagnosis and then can start to learn how to cope, not just for ourselves, but for our children, as well. Thanks for sharing.

Gina Leuci

Emma Leigh said...

It's amazing, Gina, how much kids with sensory needs require that weight on them. It wasn't until my son was 2 that we learned about weighted blankets -- he finally started sleeping through the night with 10 pounds of weight.

Walking In My Sleep said...

You should talk with Andrew Smith, director of the UNH Survey Center. He and his wife are very involved in autism research and support. They have a son with autism and have many connections in the state and region.

Billie said...

A wonderful mom in Massachusetts has devised a program with 2 other women to help parents of kids on the spectrum to organize their treatment plan and all the info that bombards them. Please read about her at Autism Journey of Leslie & Joe