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|Mon, 09-15-2003 - 2:46pm|
Like Lynne posted before me, there has been something "different" about my son for awhile. He did hit most of his milestones a little late. Every time I brought it up with the pediatrician, I was given the "all kids develop at their own rate" story. About a month ago, after mentioning AGAIN that his speech was behind, I was finally given a referral to a speech and language lab, along with a referral to an ENT. (He had a nasty ear infection, but hasn't been plagued with infections lately enough to have it impact his speech, in my opinion anyways.) I didn't really suspect anything was wrong per se, but that he was behind in his speech enough to require some outside assistance. Btw, the pediatrician who finally gave him the referral was not his regular ped, but another Dr in the same office.
Btw, my son is 3.5. He rarely talks in complete sentences, and will act like he doesn't hear you, when you know that he does. He hits frustration level very easily, and what speech he does have goes down the toilet at that point, and tantrums begin.
At the ENT, Drew was being his normal "wild man" self :) When we started to talk speech, the Dr started asking a lot of questions that I had never thought about before. Is he always this loud? Does he talk about the same things over and over? Does he always repeat what you say to him?
Before we left the ENT, the Audiologist evaluated him, and came to the conclusion that either he has a hearing loss, or he has a processing problem. Again, we were referred to the speech lab.
(I'm sorry this is getting so long!!) We are supposed to go to the speech lab next month, but my insurance is making us jump through lots of red tape for them to pay for the evaluation. I am supposed to get a letter of medical necessity from both the ENT and his pediatrician. Then, the ins co will review the claim, and decide if they will pay after the review. The ENT won't be a problem to get a letter from, but the pediatrician will, I believe. Since it wasn't his regular ped - I think we may run into problems there. I don't have the financial means to pay for the eval out of pocket. (don't think I should have to anyways!)
We had been having regular visits from Parents As Teachers, which is run by the school district up until age 3. The educator and I had talked a lot about Drew's speech, and decided to wait and see what happened over the summer, and if any improvements were made. If none, then she would refer me to the appropriate people at the school district. Well, I've contacted her and explained that he needs a speech eval, and that since my insurance is not so willing to pay for one, that I'd like it done by the school district. She said that she's referred Drew's file to the appropriate people, but I haven't heard hide nor hare since school started.
In the interim, I've done quite a bit of research on autism spectrum, and CAPD. I don't seem to find much info on CAPD. But many of the characteristics of Asperger's fit my son. He HAS to have a routine. Clothes and other things have to be a certain way. He repeats much of what I say to him, but he doesn't give any indication of understanding. He will talk at LENGTH about what happened on Dora, or Blue's Clues, and seems to zone out when he's doing it. You can try and talk to him at that point, but he just keeps right on talking. Doesn't socialize at all, wants to be by himself. Good eye contact at times, hardly any at others. Has to be "in the mood" for affection. Other things too, but I can't remember them all right now. I would expect a 3 y/o to recognize the letters of the alphabet (he can some, but not all), but not be able to recognize different models of cars (he can correctly distinguish a Porsche, from a Ferrari, from a Mustang, etc). Disciplining my son has been so hard, since most of what we say to him, may or may not be understood. I just don't know.
Also, my son's babysitter has an autistic daughter. She has made several comments to me about how she sees a lot of characteristics in Drew that she saw in her daughter at his age. At first I was really taken aback, didn't know what to think. I know this isn't very "pc" to say, and I don't mean to be offensive at all, but to someone who knows very little about autism, her daughter looks and acts "classically" autistic. She does lots of hand flapping, no eye contact, inappropriate behaviors at times. Not until I did some research did I truly see how much of a spectrum autism was. At the time my babysitter made the comparison, I didn't see how her daughter's behavior could be anything like my son at all.
Now, I know that my "research", my babysitter's opinion, and a comment from the audiologist doesn't mean much. But there's always been something about Drew that was a little different from the rest. My Mom says I'm looking for things that aren't there. My DH is mostly convinced, but is waiting for the evaluation.
What frustrates me the most right now, is that I feel "lost" and can't get any validation. No, I haven't even asked my pediatrician for that letter of medical necessity, but I already know the answer. She doesn't think there's anything wrong. I feel like I've knocked at the school district's door, but his "file" is lost in the shuffle. Where do I go from here? Who do I contact? I don't want to place a label on my child that might not be correct, but I don't want him to carry on as he is, when there could be help for him.
Thanks so much for reading all of this.
-Angela, Mom to Drew 3.5 y/o