How autism hit us

JadenGrace turned two on July 29th. A few days later, I happened to share something with friends online that I thought was strange. That Jaden wasn't talking yet. They didn't think that was so strange. In fact, they all knew (or had their own) children who didn't talk till two, or three or even four years of age. Then I said, "but that's not all--Jaden doesn't even know how to point or wave bye-bye." I am so grateful for the lone lady who spoke up. She has two autistic children. She said that sounded just like her little boy when he was two. He was diagnosed with PDD. I said, "What is PDD?" and began a Google search for it. Oh, my. Each website has different symptoms but there are ten or so that are common to all autistic children. Jaden sounded very familiar in those symptoms. That began a time of intense searching and learning and trying very hard to not change my view of my little girl. So many things began to fall into place, like lost pieces to a puzzle. Slowly, though. Over time. I knew JadenGrace had autism long before she was diagnosed. I never doubted it. But I had to hear it from someone else. I don't know why that was so important to me, since I didn't doubt that she was autistic. I just needed to know that I wasn't crazy. That was I was seeing was really there. Several people told me in the early weeks that they didn't see it. They would say "She's fine!" "She looked right at me!" "That's just her personality!" "She just doesn't want to play with the boys!" I wondered why I was the only one who could see it. Even Reg, who admitted that something was wrong, wouldn't say the A word until the Doctor said the A word. I began to become angry at all the people I listened to, even though they were really just trying to reassure me. I wanted to scream at them and shake them and say, "Don't you SEE it?!" Even the Early Steps program said, "we can't diagnose." The first Dr I took her to was the Pediatric Neurologist. He ordered EEG test and took blood and urine to do metabolic testing. He said she could have Landau Kleffner syndrome. I told him that was not as likely as Autism, since symptoms show up at about 3 or 4 in LKS, after an early period of normal development. A child who has been progressing fine just stops talking and understanding. Well, Jaden never started talking. Not much, anyway. She did learn a few words, but always 'lost' them. She would say it once or twice or in a few cases, 10 times, and then it was gone. I also reminded the Dr that LKS is very rare, while Autism is very common. (The Center for Disease Control says that in 2004, the rate of Autism was 1 in 166. Just ten years prior the rate was 1 in 10,000--this is really an epidemic! But more on that later) The good Dr talked me into the testing anyway. Good thing, I suppose,because some of Jaden's metabolic results came back slightly elevated. We are looking more into that now with another Dr. But the Neurologist wouldn't tell me my baby was autistic. He said he wasn't too sure, since her eye contact was 'pretty good'. I was floored. I wanted to ask him if he was high. A child looking into your eyes once in two hours doesn not make good eye contact. Especially not if you add in all the other obvious symptoms. He gave me a return appt for December. Our first appt was in August. I knew I wasn't waiting until December to get the truth about Jaden. It was pure torture waiting for "D" day. I suppose I can liken it to the families who have missing children, and they report that they have peace when they finally know where their child is, even if the child didn't live. I did eventually find a Dr who would diagnose Jaden quickly, but had to travel out of town to do it. I could go on and on about Dr's but just want to let everyone know that most Dr's are CLUELESS about autism. Just like most people are clueless about autism, until it hits a child they love. Then they become experts. And then some Dr's do suspect something going on with your child but are afraid to tell you, for some odd reason. The earlier you know, the more you can do for your child. Jaden's regular pediatrician knew she wasn't talking at 18 months and left it up to me whether I wanted her referred to Early Intervention or not. I appreciate his confidence in me, but if I had known that no speech is a major indicator of autism, I would have had her in Early Intervention the next day. He didn't mention autism.
Do I sound angry? I am. Mostly I am tired. Mostly I need help. Mostly I want people to care for my child the way I do. I suppose that is asking too much. But I can dream. I can look to a future where I am the voice for JadenGrace. I will speak up about autism and it's devastating effects on families. How prevelant it is now. How hard it is to get services. How insurance companies pay for addicted men and women to get back on their feet in rehab, but wont pay for children to have a therepy that the Surgeon General recommends for Autistic persons. Most insurance companies wont even pay for speech therepy--which will help JadenGrace be able to call me Mama. More tomorrow, I am tired. And sad.