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Not getting much support for my child

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Old 04-16-2008, 09:50 AM   #1
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Join Date: Jul 2006
Posts: 238
tinymom05 HB User
Not getting much support for my child

I am concerned about the support i don't get cause my child doesn't have all the signs of classical autism and he is diagnosed because of certain things, behaviors, stims, routines, transition problems etc....

Everyone that comes in contact with him thinks cause he is social, gives hugs (which an OT told me cause of input he gets from hugs he does this at times) and people think cause he does those things that he shouldnt be on the spectrum. He also has behavioral problems and the one Mom that was talking to me said "no not him" and she was going on telling him how sweet he was being, yet few minues before he was giving me a hard time and eating up how she was making a big fuss over him after. He acts up but is more extreme then others his age and for different reasons he does these things yet everyone seems to tell me it is typical and makes excuses for everything he has done. Even his stims some have said (my parents or others) are cause he copies off of other children. I have lots of his behaviors on tape and i feel like not even going to dev pedi next month cause she seems to think it is sensory but nothing is wrong she doesnt want to diagnose even though he was diagnosed by a psycologist. He has stims, and high pain threshold, hyper more than other children, thinks the world is all about him. Cannot be told and if i do tell him no he wont comply with me cause of me correcting him. He then runs to someone else whether it be dad a therapist and gives them a hug and looks back at me while he is doing this. He echoes my whole conversation he cannot have back and forth conversations. Everything seems to be about "him" if he does have any speech or he points out stuff to me which he just started doing but if i point out anything he doesnt care about it. i love hearing his progress and very proud of him but when there are concerns everything gets written off like nothing is wrong and don't give me anything to work on him with either. I ask him do you like school? He says "Acool" and babbles saying things i have no idea what he is saying. The one therapist said maybe vocal stim.

In school they have to give him easier tasks to work on complaince. Yet the speech therapist tells me he comes right to the table when she works with him at school, and i think because he knows the ST and works with her and asks for things that they work on every day cause it is his routine.

He is also obsessed with food he can eat for 3- 4 hrs straight he is chewing on his hand if he isnt eating and actually put a scab on his hand from biting so hard. He has a hard time with new places and has the biggest meltdown and needs food that is the only thing that calms him and when he starts eating he cant stop or else back to meltdown. Yet people write off his big meltdown too though, and all along i am sweating cause he is acting up and hurting himself.

I am mad cause strangers or even some therapists i know arent concerned, i wish they could walk a month in my shoes to realize what is going on and it is a broad spectrum. Just because he isnt rocking in the corner doesnt mean there arent concerns. Is it only me?

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Old 05-01-2008, 08:24 AM   #2
Join Date: Apr 2005
Posts: 470
Picali HB User
Re: Not getting much support for my child

Tiny, I think the lack of support for children is chronic and universal. There is a horrifying lack of knowledge regarding autistic spectrum disorder throughout the public sector and an endless procession of specialists who will regularly contradict themselves and each other. It's definitely not you.

I've found information from the National Autistic Society useful and I've had to develop a very thick skin. We avoid getting into discussions about behaviour and asd now because I'm fed up having to explain things and justify myself to people. My attitude now is very similar to yours - if anyone thinks they can do a better job, they are welcome to take over - I'd be very happy to sit on my bum for a month!

Try not to let other people get to you - you've enough to worry about without other people causing problems!

Old 05-01-2008, 03:11 PM   #3
Join Date: Jun 2007
Location: Texas
Posts: 370
golfhat HB Usergolfhat HB Usergolfhat HB User
Re: Not getting much support for my child

There are more services a child can get than just for autism... If a child has trouble in ANY area that keeps him from excelling in school they can have in- school help with that. Writing, speech, emotional, sensory. But you have to be able to prove it.

The school made my daughter go thru hoops for 6 months before they said ok. Once they accept them you are in for that year. Then the next year you must apply again and you start all over.

But as I said, even if your child does not fall into the SID or autism guidelines there are other types of OT or PT you can get. The teachers like the extra help because they have more than enough to do as it is.

Just because no is totally sure of the diagnosis does not mean nothing is wrong, as you well know.

Last edited by golfhat; 05-01-2008 at 03:14 PM.

Old 05-29-2008, 01:52 PM   #4
Join Date: May 2008
Location: Manitoba, Canada
Posts: 4
stepdad75 HB User
Thumbs up Re: Not getting much support for my child

Whoa .............

That sounds way too familar. Been raising a teenage boy ( 17 now ) with his mother for 3 yrs now. My opinion would be Asperger's, based on what I read. We have a fully grown man you might as well say, displaying many of those same traits and I too wonder if he is aware of his arrogance. Personally, I have a learned a lot in the few years and would have to say that he is unaware. OCD and PDD seem to throw a big-ole monkey wrench into everything the affect. Still learning though. However, it is leading to problems at home .... we can not discipline without violence. I have to watch my temper consistantly. He is more daring as he ages, yet his social capacity is around 11-ish. Disregarding house rules, yet his mom doesn't want to give up, yet we can't get him to co-operate on anything that might spruce things up for him. Very anti-social....and has not attented school for pretty much past 6 yrs..... ( I do not consider showing up when he wants to in a remidial course as going to school ). His mother has slid into 4 yrs of depression once already, before I met her ....... You have ears here ........

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