This is what my husband, Mark Diaz wrote today remembering a dear friend Rocky Leonard: Recognizably I am Not being a big Facebook/Listserv poster. However, I find it necessary, from time to time, to add input to a group where I think it is appropriate. This is one of those times. My son Tyler is 14. When he was a toddler he was diagnosed del +. Back then, like most of us, I had no idea what angelman syndrome was. I had so many questions. The internet and doctors painted a worse case scenario of what I could expect for my little boy. Quite candidly, I fell into a depression like I had never known. Im not a geneticist. I felt I had to believe what the professionals were telling me and what they were saying was that my son would NEVER walk, talk or be able to do things other kids can do. Talk about a bummer! My wife discovered the list serve and the ASF. I closely monitored the list serve where I read stories of hope and received great advice from other Angel parents. Then in the fall of 2002 I attended a picnic with other Angel parents where I met their children. I was shocked to see the level of functionality these kids were performing at. From climbing slides to swinging to signing to playing catch with a ball to feeding themselves to not spilling while they drank from an uncapped top, this was far beyond what the doctors and the internet said an Angel would be capable of. One of the parents, Rocky Leonard, engaged me in conversation welcoming me to the group. I was honestly frightened of the unknown for not just my son but for me. I told Rocky how surprised I was to see how functional an Angel could be. Now this is the point of this incredible long post; he said, The doctors dont know shit. We are the professionals when it comes down to AS. We are our childrens voice and its up to us to educate the doctors. Rocky passed away a few short weeks ago but I can still hear the advice he gave to a young 27 year old kid who was scared out of his mind. And you know what? He was right, We are the professionals. We know how to function with our angels in a world not particularly geared for angelman syndrome. We can tell when our child is going to have a seizure long before they have it and we can tell when they want something and specifically what that something is without so much as a word or a sound. What Ive found even crazier is the ability to pick up on indications of wants from angels Ive never met, and seeing other Angel parents who never met Tyler pick up on his cues. So Id like to simply pass Rocky s wisdom along. Be patient with the doctors who dont really understand AS. Teach them. You are going to live in a world of AS where most doctors will only visit it when they see your child. Teach them the signs that are unique to your Angel. But most important, try to see the world through your angels eyes. I mean seriously, dont you want in on the joke that keeps them laughing? By the way, a couple of months after being diagnosed, Tyler took his first steps. Hes been off and running ever since. His seizures are pretty much non existent except when he runs a temperature. He doesnt wear pull ups because he points to the work zone when hes gotta-go. Hes good about holding it in too. He uses his iPad mostly for his music (Imagine Dragons is his favorite) and for taking pictures and videos (NEVER change with Ty in the room). But uses it for constant communication at school and at his moms. His favorite food is salad, though everything else is fine too, and his newest passion is riding shotgun in the golf cart I saw and had to get for him. As for his functionality, He desperately wants to drive the cart but Im not that cool of a dad just yet. Though he knows how to turn the key and press the accelerator, his steering skills leave much to be desired. Oh and breaking. Thats definitely not his strong suit. But who knows what time will unfold. After all, hes not suppose to be able to do 90% of what he does. In other words; Dont let peoples opinions get in the way of what your angels abilities are. Yeah that last sentence was another Rocky quite too. Mark Diaz Holly, MI, Dad to Tyler, 14.8 yrs Deletion and disposition +
Posted on: Tue, 12 Aug 2014 18:57:32 +0000
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