My Son Turned 18 today: Reflecting on Our Journey with Autism
February 28, 2012 20 Comments
I found this tee shirt for my son while shopping for a card for him at the Lifeway store here in Georgia. It says “I will be courageous”. If you are a parent of a child with autism I don’t need to explain to you why I bought it. It takes a lot of courage to face the world with autism. Happy Birthday My Son. You are courageous – and you have inspired me to take care of children all over the world and to never, never, never give up. I love you and hope and pray for the very best for you and always will.
WOW. I couldn’t begin to explain the last 18 years without a whole book. From an easy pregnancy and simple delivery you progressed as a sweet and happy baby boy right up until 8 months when that first ear infection struck. It didn’t want to go away easily and ultimately you needed tubes to drain the infection. Prior to that we tried a lot of antibiotics and none worked. We didn’t realize back then that you had a primary immune deficiency and couldn’t make enough IgM to defend your body.
I can’t even talk about the next year and all the things that happened. But your mother and I had to watch our precious boy change without understanding what was happening. The first time you pulled the pans out of the kitchen cabinets and banged on them it was cute. The next 20 times it was obvious something was wrong. And then you just didn’t seem to cry when you fell and hurt yourself. I had never seen that before.
The worst part of those early years was the horrific diarrhea that would actually burn your bottom within seconds. That was so sad and so hard to treat. Back in those days we understood so little about the gut connection to autism.
Ultimately, secretin ( a simple hormone) give IV made a huge difference in that problem. It was an immediate change and even got you the attention of Bernie Rimland and the National Enquirer. Your response to secretin made you an immediate hit with about 10 million readers of the Enquirer and neither your nor my life has been the same since.
Thanks to a meeting I was invited to at NIH, I met Prof Gupta from University of California – Irvine who suggested I consider IVIG for you. Intravenous immunogloblin made a huge difference as well – enough so that Prof Simon Murch from the Royal Free Hospital considered it life changing for you.
Over the years I have learned much about your health and in that process you have taught me so much about helping other children. You mother has never tired from helping you in this process and you have an amazing sister who loves you and cares for you.
Now you face being an adult and seeing the world through more than just the eyes of child. You are growing up but aren’t “grown-up”. You feel that and yet you want more say over your own life. It is coming, but you mother and I recognize you still need our support.
Bless you my son. I love you and pray you continue to inspire others to persist in their struggles like you have.