Worried mom!!!! (Long)

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Registered: 10-10-2003
Worried mom!!!! (Long)
6
Fri, 10-10-2003 - 9:11pm
I have a few questions for you all, everyone seems to be so supportive and I could definetly use that right now! My DS is 5 years old and last year we were being told by his Pre-K teacher that she thought he had high functioning autism. Her reasons were because he is very hyper (little jumping bean!), doesn't seem to care about making friends and was developmentally behind the other children. Since then, we've taken him to a neuropsychologist and a psychologist along with taking him to our pediatrician. All three have said that there is not enough signs or symptoms for them to think it's any form of autism. His Neuro and Psychologist saw defenite signs of ADHD and he's now on Strattera, they both said that although he has a couple signs of Aspergers, there are no significant symptoms. He does play with kids if they want to play (sometimes he's even the one to initiate the play by approaching kids on his own!), he's never lined up objects or rocked back and forth and he does make eye contact. He will flap his hands when he gets really excited about something, but that seems to be dying down a little.

He is now at a new Pre-K for one more year and we just had a parent teacher conference. His new teacher is amazing, we think she's the best! She went over his evaluation and actually told me that he is farther along intellectually than his classmates and even wants to start him on sight reading! She told us that he is one of the funniest kids in her class also. The only problem is that for the last few days he has been out of sorts, he came into class and hid under the table crying that he wanted to go home. They have tried the weighted blankets and he's not that nuts about them, he doesn't really play with the other children. There's one little boy he will play with sometimes but they believe that this child has Autism and isn't as advanced as my son. She would like him to see the school psychologist about having mild Aspergers and we agreed to the test, she said it could come back negative but she'd like to rule it out at the school. After all this, here are my questions!

As far as playing with other children, I see my son do this a lot when I'm out with him or my family or friends take him out. We'll go to Burger King and he'll actually go up to kids and ask them to play with him, then they're off. Is that normal for Asperger children? I can't figure out why he's not playing with kids at school but outside of school he's really social!?! He's never liked loud noises and will cover his ears a lot with loud noise or if he's upset, but my 10 year old son still does this with the loud noises (even in movie theaters), yet he doesn't have Aspergers or Autism. I asked my 5 year olds psychologist over 4 times in different ways "Is there a possibility of Autism?" and "Could I find out a few years from now that he does have it?", she told me no each time. She just said that he does do some things that a child with Autism might do, but that does not mean he has it and she does not see enough to make her think he has it. I guess after 3 different Dr's saying that is not either of these things I'm not sure how to react if a school psychologist says that it might be. I'm jumping ahead I know, but it's got me a little rattled. He's such a sweet heart I can't find words to describe him, obviously I would like to think that this is something that he could grow out of, or that it's just side effects of ADHD. But at the same time, I don't want to be one of those parents who is so worried about the worst that I put myself in denial which wouldn't help my little guy.

Well now I have myself near tears so I guess that's my signal to end this saga! Sorry so long, I appreciate any response I get! =)

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Registered: 06-25-2003
Sat, 10-11-2003 - 12:55am
Hello and welcome,

I really want Sio to jump into this thread, and tell her story (again! Sorry Sio), but I know she is really busy right now, and may not be checking the boards too much.

This is just a hunch, but check out the Central Auditory Processing Disorder boards and general information on CAPD. Some kids with it can look like they may have HFA or Aspergers, and although thorough testing will rule those out, you can be left with a missing piece! My uneducated layperson's understanding of CAPD, is that the the brain cannot "filter out" certain noises which may be in the background in order to concentrate on the important stuff; such as like the human voice. Therefore there are often language delays and communication 'gaps' Symptoms and severity vary, but many children often misprounounce words (cannot distinguish subtle differences in sounds), have difficulty following the thread of the conversation and can often have trouble with word sequencing and following directions.

Do you notice that he often will appear to be listening to something very faint in the

background or will ask you about a background noise that you didn't even know was there? I know loud noises and certain frequencies will often upset a CAPD kid also, but this is also true for a kid with sensory issues who has sensitive hearing.

CAPD is diagnosed by an audiologist, but one specifically trained in this field and qualified to test for it. It cannot be officially diagnosed until about age 7, but some audiologists will screen a younger child to see if he shows "signficance" for it. In our area, there is no insurance coverage for the testing. (I want both my kids tested for this). Many pediatricians have not heard of it. I found an audiologist in our area by calling our 'regular' audiologist and asking him if he had knew of a CAPD specialist, then when the ped had not heard of it I gave her the number of the new audiologist and let them sort it out. Our ped was all gung ho to have DS screened after that!

If your DS receives OT, it may be worth asking his OT if s/he knows much about APDs (auditory processing disorders) and the tests and therapies involved. There are therapies available, and I know once diagnosed and getting help, most of these kids just take off running.

So there are my two cents. I hope it helps.

Good luck and let us know how things go, OK?

-Paula


-Paula

visit my blog at www.onesickmother.com
Avatar for littleroses
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Registered: 03-28-2003
Sat, 10-11-2003 - 12:52pm
I don't have a lot of advice to offer, but I'll tell you what happened with my dd's dx. My daughter is 5 1/2 and just diagnosed last April with autism spectrum disorder. She's high functioning. My daughter started having seizures at 15 months old so she has been seeing a pediatric neurologist as well as her regular pediatrician. I kept saying, "She's not talking like the other kids." But she was talking. She had a whole catalog of pre-learned phrases that she fit into conversation as she got older. Enough to fool me and doctors. Only, I was with her more and she'd put these phrases into improper context. "You're a good customer!" Didn't quite fit into the topic at hand...but it was language. "Shake that bubble butt!" was funny...if you're watching Spongebob Squarepants, but not when my 4 year old thinks it's average dialog. Also, she is very easy to direct. Never a huge problems with transitioning to new activities or environments. She played alongside other children well. She just didn't engage in pretend play or a reciprocal conversation with them. They were more like the toys she played with. She also was fascinated with letters and numbers. She knew the alphabet and the sounds the letters make at age two. At age 3, she was writing words. She slept with books everynight. She is very intelligent. The big clincher was how incredibly friendly she is. She is even very charming. Everybody always loves my daughter. She'll go up to a cashier and say, "Hi, my name is Madison and this is mama!" In a big movie star voice. Only, she did this everyday at preschool for two years to her teachers. As cute as all these charming and intelligent things were...it seemed like we were living with Data (the android from Star Trek).

I could go on and on because there's a lot of things about her that are obvious to me now that weren't then (toe-walking, anxiety, etc). But, the doctors missed all this as well. All I really should have said in the first place instead of writing this whole rigamarole! Sorry! I took her to the school district for help. There is something called early intervention and that's where things got rolling for her. Some school districts may call it something else, but usually it's referred to as early intervention. Look in your phone book for the number to the school district and asked for early intervention's phone number. They will evaluate your child. Here they did a preliminary screening and once she obviosly missed some markers...she went through some more evaluations. This is a completely free of charge process to you. This is available to children starting at about 2-3 years old. That may vary between school districts as well, I'm not sure, but it is early intervention to help them before they get to school.

And, if everyone says you're child is fine, but you're still not getting the feeling that everything is quite right or the teachers are telling you otherwise. Just don't give up. My oldest daughter went to early intervention and didn't qualify for help from them by one point. So, safety nets do have holes in them. You're the last true safety net for your kids. Last of all, keep a diary of behaviors. Buy a cheap notebook at the store and write down anything that's odd. Does he walk on his toes often? Did teacher say he flipped out today when he had to stop doing an activity? Does he gag on his foods? This is a good way for you to see a consistent pattern that you can identify over time.

And actually, this is last of all. Everything is going to be okay. It's going to be stressful trying to map all this out. It's stressful to worry about your child. But, you sound like you are on top of things and persistent and keep looking for answers. You are a great parent! I can tell, with you around, he's going to be okay.

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Registered: 03-28-2003
Sat, 10-11-2003 - 5:39pm
You know, your post made me cry! You and I have been living this hell together and we didn't even know it! Oh, sorry, my name is Siobhain, I sign off as Sio. I am the mother of two wonderful children; Liam, age 6 grade 1, and Linnane, age 4, last year of Pre-K.

Last year, sometime in the beginning of the first half of school, the principal told me Liam had Asperger's Syndrome. I had no idea what that was, but I made quite the point of finding out! I have my master's in counseling, and I've always worked with adults with disabilities, still, once she said it, I accepted it as a very real possibility (as a good parent should). The first specialist didn't actually give Liam any tests, just, based on his professional experience and knowledge, ruled out ASD's to include high functioning autism and Asperger's. Quite relieved, I gave the principal the good news, returned to this board, thanked the ladies, (and, now a guy or two)for the wealth of 411 and support, and closed that chapter. The principal called me when she got my note. She was very direct. the psychologist just missed the boat. She recommended we either go through the public school system or go to this Neuropsychologist in town she wanted me to see in the first place. I called the lady she liked, it was like a 9 month waiting list! (I was back in panic mode). That would be a long time to wait! I called the school system. Here, in our county, what they do, is they try to get parents to take kids who may be on the spectrum to a center called TEAACH. It is part of the University of North Carolina system, and they have these diagnostic and resource centers throughout the state. They just deal with Autism and ADS's. Their waiting list was like 6 months! Still, I signed him up. (From my work, I knew some folks there, so I was hopeful it would move along quicker). A couple months later, I was called, as they had a cancellation. I got there, they did the intake interview and said that was all they needed to do! Not enough red flags. Out the door I went. This time I told the principal in person, and, after asking me about the tests they used to come to their conclusions, she pointed out that he still hadn't actually been evaluated! So, I knew she felt like the TEAACH center also missed the boat. Along the way, my pediatrition also said he just didn't see autism or Asperger's.

Eventually, because of the other problems, like the ones you wrote about with your child, I went to the PhD the principal had referred me to in the first place. I completely checked her out. I mean, I wasn't going to see her just for the principal! But everyone I talked to about her gave her such rave reviews! Also, I liked her. I mean, in the whole process, I'd talked to her a couple of times. She did grad and undergrad at Harvard, she worked at the Harvard Asperger's clinic. She was the person both TEAACH and the school system referred kids to when they had questions. Also, her experience was very wide and diverse. Not just autism. She insisted she'd only give Liam a full psycho-educational evaluation. The first day she met Liam she said "no Asperger's". She wasn't going to even evaluate him for it, she was so sure. Then she spoke to the principal. Our next meeting, she said sometimes it is just as important to rule Autism out as it is to rule it in. She pointed out to me that this would follow him. And, people know so little about Asperger's and HFA, that they can convince themselves that things are there when they are not. Of course, all I heard in my heart was that she wanted to test him for it! (Back in panic mode). DH, gotta give him credit, said do it, and do it to the nth degree. So she did.

Although Liam has a social component that is very similar to Aspergers, and he has sensory issues, he is in the <1% range for both the Gillium Autism Scale and the Asperger's Syndrome Diagnostic Scale.

I want you to do me a favor. I know this is a lot to ask, but your post so reminds me of my first post, I think it would be good if you could read some of the story (knowing the end). Could you please do a search on

Sio Liam

That should get you most of them. Of course, I don't think you will read them all, just check some of them out. It may give you some confidence. I think the moral of Liam's story is, just because people see autism and Asperger's doesn't mean that's what it is. Liam actually has Central Auditory Processing Disorder, Sensory Integration Dysfunction, Dyslexia, and visual processing issues to go with his ADD inattentive. All this results in an inability for him to interact with his peers in a lot of situations. (Paula did an excellent job of describing CAPD). Like your son,he flaps his hands. mainly if he is in trouble or if an airplane flies over. Unlike a lot of kids with CAPD/APD, he has no language delays. But, he did have a very flat affect, until here recently. Also, he is very smart.

Some books I'd suggest you check out are:

*Like Sound Through Water*

*When the Brain Can't Hear*

*Asperger's Syndrome* by Tony Attwood

Feel free to email me off list siobhain@ec.rr.com

The ladies on this board (and gents) are great, and, so supportive! Honestly, even though I wouldn't recognize them on the street, I consider them amoung my closests friends. When we have questions, my DH will say "go ask your girls" then he bugs me to check the board! One thing they said at some point was, I got the opinions from the experts, so maybe, just maybe, the school was wrong. My question to you is, why do your experts think your son isn't on the spectrum? And, if all the autistic like charecteristics are the ones mentioned, then what are his non-autistic traits? For example, Liam has no problems with comprehension or abstract thinking. (T. Attwood does a great job of breaking down those traits in an easy to understand way). Also, the PhD's and the teachers are professionals, but you are the expert on your son, what do you think?

Sio


Edited 10/11/2003 5:53:10 PM ET by sio64

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Registered: 10-10-2003
Sat, 10-11-2003 - 9:26pm
First off, I want to tell you all thank you so much! You're all just amazing people and so supportive!

Sio, I will definetely look up Sio Liam, if not tonight then tomorrow morning. I looked up CAPD on Yahoo and some of those symptoms sound a lot like DS, I'm going to check with his psychologist about that. Wouldn't it be nice to just have 1 week where your child doesn't have to deal with this and you don't have to worry about it? I find myself having panic modes also, my biggest worry is that kids will be mean to him or tease him or that he won't have many friends. I'll actually sit back and get myself worked up worrying that he'll have birthday parties and kids won't show up or want to come. It's a horrible feeling! He's such a sweet kid that the idea of his feelings ever being hurt by others just tears me up!

Sio, how are your children doing now? Have things gotten better and are they happy? Thanks for showing me I'm not the only one out there with these problems, I was really starting to feel alone with all of this!

iVillage Member
Registered: 06-25-2003
Sat, 10-11-2003 - 11:21pm
Thanks Sio,

I saw this post and I instantly thought of you. Of course I could well be wrong, I think the possibility of an APD should be checked out, at very least.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-28-2003
Sun, 10-12-2003 - 10:16pm
Your post definitely gave me the deja-vu feeling! I've been thinking a lot about Liam in pre-school. I used to say I didn't actually notice his issues in pre-school, but I think that was a form of denial. I just didn't have the fortitude to open up to the possibility that he may have issues. Thank goodness, in life, sometimes when we avoid a certain road, we find it at our open door, refusing to not be trodden. That's basically what happened to us.

In pre-school, Liam was always in smaller classes, and, the building was new and very well insulated. So his issues were more related to the ADD. But once he got to Kindergarten, it was just overwhelming for him. Last year,with his CAPD, he had to focus on all the noises he heard. Thus, if he was at the table, and, say, Grace and Hannah are discussing horses, or Will is trying to tell him about his latest Lego invention, Liam is actually listening with equal attention to both. This results in him not actually being able to be a part of either conversation. Throw in there someone somewhere in the building flushing a toilet, and he has to give that his attention as well. By the time the teacher says "boys and girls, today we are studying the letter 's'", he has long sense given up and may just need to crawl under the table to avoid letting the whole world in via his ears. Throw into this already miserable mix, a very slow processing speed. What he does hear, he has to concentrate on so hard, he might not be able to look at you while you're talking. So, if you were in his classroom, and, telling him you think he hung the moon, he's staring straight ahead, not saying a word. Then, you either repeat it, or, turn as you've given up. And, he answers you! Looking back, I can see why they came up with Asperger's. Honestly, if you saw him at a playground at school, even today, there is a very good chance he could go through the whole recess playing completely alone. Walking around the playground, not even looking at another soul. So entrenched in his little world, that even the teacher blowing her whistle isn't responded to (and, we know he can't help but attend to the noise!)

You asked if things have gotten better, and, in a lot of ways, they have. We did some pretty amazing things that have helped him a lot. First, I got him some musicians ear plugs. They filter out background noise, but he can still converse with people. Totally blocking noise actually increases noise sensitivity, so the audiologist suggested these plugs as a great alternative. Right off the bat, as soon as he got them, he used them and it was amazing the difference they made. School has been in session for a while, and he's acclimated to the noise, so he uses them a lot less. But they are in his backpack if he needs them. (they were $135-ouch). Next, we did a program called FastForWord. This program slows down sound and reintroduces sound to the brain, via computer games. These are sounds, that due to his CAPD, he didn't properly hear or process when he was learning language. Before FFW, Liam didn't understand the subtle nuances of language, and his affect was quite flat. Unless, of course, he was having a meltdown, or extremely happy. After just two of the six weeks we did FFW, people were making comments to me about his affect. Not always in the nicest of contexts, mind you! He became quite a sarcastic little bugger! (He's still way into the sarcasm!). At six, and only ever living in the south, he is now picking up a regional dialect. Very subtle, but there. Best of all, he notices these changes himself! He tells me things he didn't "hear" before, like the bubbles on the fish tank. This was, by far the best money spent. But it was a lot of $. The lisencing fee was $908. then, my co-pay was $25 a day. He did it five days a week. And, we will return to FFW1 in the summer, then move on to FFW2. That will require a reduced liscening fee, and another $25 a day. Sessions run between 6 and 8 weeks per program. We had to stop as it was just too exhausting for him to do it while going to school.

Once I had the dx, he and I (and the rest of the family) all started talking about it. Now, he can tell us when he is overwhelmed and when he just needs quiet. That has taken a lot of the pressure off of him. He knows why he feels that way, and what to expect. This year, he is much more social then he was last year.

Still, he is not the most social person you've ever met. Actually, he is still the least social kid in his class. It still bothers me. (Not him, me). At this point, it doesn't seem to bother his peers, and they accept him, and, when he wants to, they play with him. But, like you, I worry a lot about the future. Like everyone on this board! I see a lot of life passing him by, and I worry about that.

I'm lucky in one respect. CAPD didn't have a name in my house when I was growing up, but my sister, Linnane, sure had it. She still does. She's in her forties, and when I was at the bottom of my fall to despair, she'd rather flippantly tell me he'll outgrow most of this, so just lighten up. I often wanted to drive to Miami just to hit her! But then I would have to say, "self, what ever he got, she got. So, she just may know what she's talking about!"

Anyway, enough about that! Yes, he's got a long way to go, but he is doing better.

Now, if you don't mind me asking, why did those experts rule out ASD's, and, why isn't that enough for the school? Did you tell the new school about the psychologist and the neuro psychologist?

Sio