For those of you who have been reading my blog for the past year that I have been on VOX you know that I am the proud mommy of two wonderful boys on the Autism Spectrum. Today Oprah had Jenny McCarthy and Holly Robinson Peete on her show. They are both mommies to Autistic sons who came on the show to tell their stories. It really brought back a lot of memories of the early autism days for our family. So I thought I would come here and share some more...
Christian and Aaron are fraternal twins who are 8 years old. They were born 16 weeks premature and had quite a fight from birth until their first birthday to stay alive. At the age of about 18 months we took them in for their MMR/DPT shots and within DAYS I knew that something DEVASTATING had happened with Christian. He began flapping his hands, banging his head on things, and scraping his forehead on the floor until it bled. He ceased to speak, smile or make eye contact. (all of this occurred within a short few short days of having the vaccinations) My little boy just left...went away...to where I still don't know.
Needless to say I was horrified and wanted to know what was going on but none of the doctors we spoke to could give us a straight answer. We took him to the Pediatric Developmental Clinic in Houston at Texas Children's Hosptital for testing around the age of two. After a few short weeks we had our Diagnosis. Christian was diagnosed with Profound Autism. It was one of the most heartbreaking days I have ever experienced. It truly felt like a death sentence for him.
Since then I have learned that Autism IS treatable.(at least for the families who have good insurance and a LOT of money) Some would say CURABLE but I have my own questions about that because I have not found a cure yet. What I WILL tell you is that it wasn't ANY of the doctors that gave me hope about Christian. They all said the same thing....
He will never speak....
He will never be able to learn like other kids...
He will never show affection....
He will be profoundly retarded....
And the most shocking thing of all they said to me...80% of all marriages that get an Autism diagnosis with a child end in divorce.....
Needless to say It was hard to have hope after hearing all of that...
But then I attended the University of Google....That means that as soon as I got home I got on Google and typed in Autism...and I read EVERYTHING I could find..I ordered every book I could get my hands on about Autism, and READ THEM....I consider myself to be quite the expert on Autism...
It was only a couple of years ago that we got the same heartbreaking diagnosis for our other twin Aaron. His Autism isn't nearly as severe as Christian's but it is DEFINITELY noticeable...and I am POSITIVE it came about from the same shot that Christian got.
And here's a scary statistic:
When Christian was diagnosed at the age of two with Autism the statistics said one in 150 children would be diagnosed with Autism. TODAY that statistic is one in 94 boys will be diagnosed with Autism. What is it that's fueling this increase? I don't know. I would guess that it has a LOT to do with immunizations. I know I am not alone in this belief.
We have tried everything possible to HEAL Christian and Aaron. Special diets, ABA, Floortime, Speech Therapy, Occupational Therapy, Physical Therapy, Enzymes, you name it... Did any of it help? Well, to be honest not really....I do think it MIGHT have helped if we could have afforded to continue with it.
Treating Autism is PROHIBITIVELY expensive if you don't have insurance(which we don't). (just one hour of ABA therapy cost around 60.00 here in Texas. and kids with moderate Autism like Christian has would require 40 hours a week of ABA to see any good result...you do the math on that..)(around 2400.00 per week per child)
In a way watching today's Oprah only made me feel guilty and sad.Sad that I couldn't afford to provide for my sons what Jenny and Holly could afford to provide for their sons. I am thrilled that their sons are better, and sad that mine may never get there. It just seems so unfair sometimes.
In a way I've just had to learn to accept that this is the way my boys are. They have Autism. And although I can do things to make their lives easier and more comfortable we just simply cannot afford to CURE them, and time is running out. Science says that the sooner you nip it in the bud the better your chances are of a good outcome...Where does that leave us? Where does that leave the moms who aren't celebrities? I don't know. I guess you could say I have mixed feelings about it all.
There's a part of me that wants to fight tooth and nail for my boys, and there's a part of me that's TIRED. There's a part of me that's hopeful, and a part of me that's hopeless. I do know this. We HAVE beat the odds so far. Christian does speak, he does make eye contact, and he does show affection. He no longer bangs his head or flaps his hands, and he is in normal classes at school with an aide.
Aaron is in normal classes without an Aide, although heavily medicated for his ADHD, OCD and Autism, and he struggles.
And that divorce statistic? Yeah we beat that too...
I know this much. I won't ever give up on them. I will always love them, and I will always be there for them. I have to hope in my heart that that is enough.
