My world as a mother began officially on October 21st 1999 when I gave birth to a perfect baby, well minus the hip dysplasia which threw me into fits of hysteria. How would we get through this?
Sounds silly but at the time she could’ve been missing legs. She wore a harness for 8 long weeks, one that she could’ve cared less about mind you, but I needed a straight jacket. Then a second pregnancy, one riddled with gestational diabetes, six needles of insulin a day, a potential pulmonary embolism and swelling that made me look like an alien.
I learned my lesson though and I wasn’t gonna freak out this time. I was gonna have another perfectly healthy beautiful child . . .and I did. My son wasn’t ‘strong like a bull’ like his sister but he was magical and he fattened up in no time.
THE best baby ever he was in fact, not like that high-needs crying machine that was my daughter. He gazed into my eyes and he hit every milestone, but definitely not on the same time table as his big sister who did everything months before the milestones. He remained a little delayed and everyone said boys were like that and I believed them.
I’ve always gone with my gut, that spiritual gooey center that tells me when I need to worry and it wasn’t making a peep. Aidan didn’t adjust to the Moms free morning like his classmates but still, my radar said nothing. He can adjust at his own rate and I will be fine with this all the way. His teacher told me one day in a very upset state that he displayed a couple of signs that she thought needed investigating. He flapped his hands when he was happy and he sat in a “W” pattern. I’m not one of these parents who gets defensive and I really appreciated that they were courageous enough to tell me. I made assessment appointments at the Children’s Hospital and through Henrico county ASAP and he was seen within days. I pulled every string I had everywhere.
He was diagnosed with Autism. I was told he might be a little peculiar and work in a cubical one day but he would continue to develop and maybe even outgrown this very temporary diagnoses and he did. He progressed every day. Most people didn’t even believe me when I told them he had Autism and within weeks of his assessment he was getting full services through the county. He received hours of all the recommended early intervention strategies and we were pleased. My heart was happy and my radar was silent.
At age 7 he slowly started slipping away. He went inside for brief spells but they were concerning me. This was the first time my radar went off. . .REALLY OFF. I had always read anything and everything I could get my hands on about Autism and it simply didn’t applyto my son and now it was.
This is NOT the way it was supposed to happen.
He was continually getting better and occasionally he would go inside but come out stronger. This time the spells were longer and now he wasn’t emerging. I was scared to death. My son was sitting beside me cuddled up in my arms and he was GONE. It was like someone had kidnapped his soul and I needed to know how to bring him back. I spent more and more time on the internet scouring websites and alternative treatments and I found TACA- Talk About Curing Autism. I read every page and watched videos, read different families experiences and although there was no active chapter in Richmond I still clung to that website. It offered real hope and I needed some. I was losing it.
Aidan stopped dressing himself, toileting independently, started fecal smearing, had disrupted sleep patterns and as if that wasn’t enough he had PICA. If you don’t know what that is I hope you never have to deal with it first hand. He drooled and chewed on his own shirts and anything else he could find. He stopped speaking. We waited impatiently for our first appointment with a DAN (Defeat Autism Now) Doctor and she instantly knew things about him that made sense and we left with supplements and a plan.
We started the gluten/dairy free diet within days. I didn’t wanna do it over weeks.
We were diligent about compliance and almost 3 months later we started getting him back.
His distended stomach started to diminish. His color returned, the PICA finally stopped. The words started flowing out of his mouth and I knew my son was healthier physically and mentally, but this fight was just getting started. I attended two conferences and I learned more and more every day. What I learned is that Autism is treatable. If you’ve met one child with Autism then you’ve met one child with Autism. I learned that I need support and there is always a different combination and his body chemistry changes with
Lisa Ann Setchel has recently joined the Richmondmom.com team. She is the joyous mother of two, owner of FreezeFrame Photo booth, and powerful autism advocate.
growth. The work doesn’t stop with the Doctor and it never really ends. This will be an ongoing battle that I will gladly fight with my son. He’s worth every effort and the way I stay sane is helping other families navigate this incredibly challenging journey. Whether you are starting, thinking about starting, afraid to start this process, on your way, hit a bump in the road or there is someone who either needs to hear what you know or someone who can enlighten you with what they know, then you should come. We don’t sell anything and it doesn’t cost anything. We just want what you want . . .For your child to be the best they can possibly be.
“Some of our families have been told to put their child in an institution. We’re hoping for Harvard”
TACA meets the first Friday of each month. We are a new chapter and all are welcome.
April is Autism Awareness Month ~ Join Us
DATE: April 6th 2012 7pm-9pm
WHERE: St. Andrew’s United Methodist Church
9801 fort King Road
Richmond, VA 23229
For more information about autism visit the TACA website.
