THERE. I said it. We now have a diagnosis of Autism. Specifically, Pervasive Developmental Disorder-Not Otherwise Specified. I didn't know what to do with that information for the first few days. I felt like I was saying a "dirty" word or that maybe Charley would "look different" now. I didn't want to talk about it or tell anyone. I can't say that I was completely surprised by the diagnosis, given some of Charley's behaviors. But, it was still an emotional blow. As a therapist, I've worked with lots of kids with autism and always found myself wondering how the parents "did it". Well, I guess I'll know now.
I knew some in our "therapy world" would scoff and discount the diagnosis, some family and friends would say, "He will grow out of it. He's just being a boy!" and some would probably even say, "DUH! You didn't know?" To all of them I say, "If you know our sweet son, I appreciate your opinion. But, it's just that...your opinion." Believe me, we've heard 1000 different opinions from qualified and not-so qualified individuals. And, honestly, every one of those opinions land on my heart. Because Charley is my son. He is my child. I love that child with all my heart. And, if the autism diagnosis means that Charley will have access to more services now and in the future, then I'm OK with it. Especially, since I watched the test, talked at length with the physician and therapist who tested him, and understood and agreed with the results.
Charley is his own unique little self. If you only know him through the BAZILLION pictures that I've posted on facebook, you don't know the extent of his disabilities. Most of my friends don't really know until they spend an hour or so with us in a restaurant, at a park, or at home. Some don't know what to say...some judge...but some just love us - period. I thank God for those who don't mumble under their breath when I give Charley his binky when he's having a meltdown, or when I give him a sippy instead of an open cup because he doesn't have the praxis and motor control to bring the cup to his mouth without spilling it all over himself. The lack of eye contact, inability to really play with other children, the frequent visual self-stimulation with anything that resembles a stick, the severe lack of balance and clumsiness, and the emotional breakdowns when getting over-whelmed are just a few of his "quirky" traits that make life a little more difficult for Charley. They don't define him and neither does autism.
Charley is a beautiful, fun-loving, sweet, sometimes shy little boy with a smile that will literally melt your heart. He loves music, his dog, his Daddy and anything that spins. He just recently became "attached at the hip" to Mommy (and I LOVE it!) and he has the BEST giggle and laugh that you will ever hear from a child. Despite some huge developmental hurdles he faces, we truly believe that he will achieve great things. Only God knows what that will be and it's our hope that one day, Charley will desire to have Jesus in his heart so that he can follow that path that God has already set in motion for him.
So, if you get the opportunity to meet Charley...please don't take it personally if he doesn't acknowledge that you're in the room, or he hides his face in my neck, or has a meltdown in the floor. You may get a big wave, a huge smile, and a babbling one-sided conversation. Who knows?...We never do! :-)
Just know that God placed this special little one in our lives for specific reasons. All of which, I'm guessing, don't necessarily have to do with Charley. He has taught us so much in the last 2 years about God's redeeming love, grace, and faithfulness. Four days after the autism diagnosis, we found out that Charley is having seizures that the physicians don't want to treat at this time. Again, hard news to swallow, especially after we were told that at some point they will be severe enough to treat. Next week, we go to Cardinal Glennon in St. Louis to test his kidneys, heart, eyes, hearing, and to visit the genetics clinic to learn more about his specific chromosome deletion. Please pray with us that the Lord will have his hand on Charley and his health, and that He would continue to give us the strength and knowledge to handle what challenges we may face while helping Charley navigate his way through life.
Love to ya,
Shell
