Thursday, March 21, 2013

Looking Back and Pressing Forward

-from Christy

Josiah was almost eighteen months old. Jeremy and I had been thinking for a while that something was a little off, but we soothed our concerns with the idea that perhaps our sweet boy was just quirky. My Mama and Daddy had been suspicious too, but they waited a little while to say anything. My Grandmother was close to passing, and Mama knew it just wasn't the time to tell me that she was wondering about the possibility of Autism.

I remember sitting in the living room with Jeremy one evening. I'm not sure which of us pulled the website up with a list of warning signs for Autism, but there it was. We read the list, and we sat in disbelief. It was like reading Josiah's biography. It was undeniable. This was our boy. I cried in bed that night as we lay looking at each other with Josiah between us. We fell asleep wondering if this could be and what were we going to do.

I awoke the next morning on a mission. Mama suggested a few people to call, and those people suggested a few people to call, and then I talked to our pediatrician on the phone. Dr. Mertz has become a dear friend over the years. He has walked through many difficult trials with us, and I knew he trusted my mother's intuition. Dr. Mertz asked me what things were concerning me, and he agreed to make a referral to the Children's Developmental Services Agency for testing. Dr. Mertz and a few other precious friends gave me very clear direction those first few days. Our initial meetings with the CDSA confirmed our fears, and, by the age of two, Josiah received his official diagnosis of Autism. 

And so began the flurry of therapies. Speech, Occupational, and Educational. I researched and I made appointments with a neurologist and a developmental pediatrician. Josiah underwent an MRI with contrast and genetic testing. It was at our neurologists office that I first heard the term ABA (Applied Behavior Analysis) therapy. The doctor assured us that the therapy is exceptionally costly, and he said that there were several other alternatives that would provide Josiah with every opportunity for development. He was right about ABA being expensive. Jeremy priced it, and, for one month of therapy, it would have taken our entire monthly income. It just wasn't a possibility. So I set out to learn about every therapy and early intervention we could get for Josiah. And we did them all. We drove to and sat through hours of therapy each week. I am thankful for those times because I now have the confidence that I did everything I could do. The therapies and therapists were good and so very supportive, but none of us had a clue just how severe Josiah's Autism truly was. 

Four and a half years later, our sweet boy has had almost no developmental gains. He now has the diagnosis of severe Autism and intellectual disability. We often hear from those working with him that he is one of the most severe children they have ever seen with this disorder. The Alamance Burlington School System (ABSS) just recently approved Josiah for homebound education, and they have brought in a well known ABA consultant to work with us. We are so thankful for this opportunity, but we are guardedly optimistic. We really like the consultant, and she understands and agrees with what we have been saying about Josiah for a long time. Our goals for him are the same, and she has given us many reasons for hope. Not hope like "maybe he will earn a PhD someday," but hope like "maybe he will potty train and maybe he will learn a few signs." Hope is a blessing! 

After our first few meetings, I was left thrilled about being hopeful, but heavyhearted that we were just getting access to ABA now. The therapy the consultant is using is actually a version of ABA called the Verbal Behavior Approach. The book we are reading makes so much sense. I have been left wondering why I have never been told about this book before. 

I know this is a lot of rambling to get to the point of this post, but here it is......To every Daddy and Mama out there wondering what to do, to every parent out there wishing they would have, and to every one asking what if, all you can do is your best today. God is in control. He gives us knowledge when He wants us to know. Our job is to do the best we can for our child with what God has given us. And so I am trying very hard to take my own advice right now. Stop what if-ing, Christy. Do all you can for this sweet boy today. Tomorrow will come, and God will give you the knowledge and strength for tomorrow. 

For all those Mama's looking for a way to start implementing ABA and Verbal Behavior techniques at home, here is the book you need. I am recommending it not because we have seen great gains yet, but because it is important to hope. Love and Blessings! 

1 comment:

Just use your name, not your email address.