Another lurker introduction

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iVillage Member
Registered: 03-25-2003
Another lurker introduction
2
Mon, 09-15-2003 - 2:46pm
I've been lurking on this board for about a week now. I have a feeling that this might become my new "home" of sorts.

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

iVillage Member
Registered: 03-25-2003
Mon, 09-15-2003 - 7:06pm
Hi Angela -

Thanks for your post below! I'm happy to 'meet' someone else who delurked at the same time I did...we can get to know the others here together. Until a week ago I thought everything was just fine with Ben, so dealing with this has completely blindsided me. I was really glad to find this board and I'm looking forward to hearing more from those who have been there and done that (or going there and doing that, as the case may be!)

Glad you're here!

Lynne

iVillage Member
Registered: 03-26-2003
Mon, 09-15-2003 - 8:05pm
hello and welcome.

first of all, BTDT on lots of what you said. My dd had lots of ear infections, was chronically late on motor milestones but not terribly so, had very odd language and language was real slow in coming, and i had a ped that wasn't particularly concerned. Finally when he "wasn't" concerned after her 3 year check up I did some investigation and found a private SLP to do an eval and found her to be significantly delayed with a language disorder. Took another year to get a PDD diagnosis, but most docs are better about that now. This was 6 years ago.

You have a couple options here. First, the district is dragging there heals and it is time to learn IEP (Individual Education Plan - the plan every child with special needs gets) and IDEA (individuals with disabilities in education act - the national law behind special education) 101.

Rule #1 - put everything in writing. you need to send a request to have your son evaluated to the district in writing. When you do that it sets the time limits in place. They then need to get an assessment plan to you and get him assessed within a certain time period. THis changes state to state, but typically the whole process takes less than 2 months. Also here in CA, they have to have an assessment plan to you to sign within 2 weeks.

Rule #2- get him completely evaluated. They do need to evaluate every area of suspected disability. If you just ask for speech now they will do that, then when you meet you may want to address more and then it takes more time. Ask for full evaluation now. That would most likely include speech and language, Occupational and physical therapy (motor skills), and pyschological (that is a lot of the cognitive and behavioral testing that may indicate autism type stuff, will also show if he is learning on age level or if he is behind). They may also separate achievement tests for how his preacademic skills are. This is a bigger area among school age children.

Find parents groups in your area. They will know what is around and available in your area and will have good contacts and tips.

Next, I would consider finding a new pediatrician if yours in not supportive. Been that route and it is a real headache trying to get them to listen to your concerns.

Welcome to our board.

Renee

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