It's official now

iVillage Member
Registered: 03-22-2006
It's official now
18
Sun, 12-31-2006 - 4:15pm

I've posted here a few times in the past here about my son, who will be 6 in March. We had an intensive three day clinic to attend at the beginning of December and he's now been diagnosed with Autism Spectrum Disorder officially, the pediatrician defined his diagnosis as Aspergers verbally but on paper he's ASD. He stims and has intense interests, is cognitively normal and is in the 95th percentile for vocabulary.

The team said it was so hard to get a diagnosis because he appears so normal, brilliant actually with his vocabulary. Which just goes to show how little most doctors actually know about Autism. We've seen a pediatrician in the past who said his stimming was just a 'habit' and we needed to distract him. On the second day of the assessment he started stimming in front of the psychologist which he virtually hasn't done much out of the home in a long, long time. Her assessment was grueling for my son, question after question with no time for him to talk (disaster for my guy, he *needs* to talk, a lot) so in order to cope with the over load he started stimming. I've only ever had digital video on the lap top to show doctors in the past so her seeing the stimming in person really helped show what I see all the time but have had a hard time conveying.

So, here were are. Trying to find a behaviour interventionist if we even need one. I'm not into ABA at all and the BI training seems to be about that type of therapy. We were given a lot of credit by the assessment team for the work my husband and I have put in on our own one on one with our son and would like to continue in the same vein with other therapies.

We will finally qualify for funding to pay for some occupational therapy. The public child development centre ot wouldn't even see him, he's not disabled enough I suppose. She's the only ot for our cdc and whole school district so she's incredibly busy. He stims though, a lot, and I feel it's sensory related.

So, I guess this is my intro, we are in BC, Canada, in the north interior. We live on 10 acres with a few pets that my son adores. The animals really are good therapy for him. He's homeschooled but does a lot of things, like swimming, skiing (lessons in January if he enjoys it), play groups, etc. We are also looking into gymnastics. No siblings.

I'm wondering, do any of you use behaviour interventionists or other therapies like an OT, etc? My son has trouble sharing the conversation sometimes and using 'first and then' seems to help, are there any other tips you have? I am also ordering Writing with Symbols and will try to use PECS for our daily schedule because he likes to focus visually on things.




Edited 12/31/2006 4:30 pm ET by ocarina101

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iVillage Member
Registered: 03-20-2003
Tue, 01-02-2007 - 11:56pm

Welcome to our cozy little group.

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iVillage Member
Registered: 03-22-2006
Wed, 01-03-2007 - 12:18am

Hi, cl-insideout418, thanks for the welcome and answering my question. :)

When you say your son has personal care attendants, is that at school, at home or within the community? Also, what is a PCA and ST?

iVillage Member
Registered: 03-20-2003
Wed, 01-03-2007 - 9:08pm

Isaac has personal care attendants here at home, but he also attends a center based program where he has them as well.

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iVillage Member
Registered: 03-22-2006
Thu, 01-04-2007 - 12:44am

Thank you for clarifying the abbreviations PCA. :)

I'm meeting with the occupational therapist and behaviour interventionist who works with the therapist but charges way less on the 15th. that we make progress. :)

iVillage Member
Registered: 11-11-2003
Thu, 01-04-2007 - 12:17pm

Sounds like things are moving forward for you guys!

My son who's now 8 was diagnosed when he was 5. I did alot of sensory diet stuff with him up to that point and we did some private OT at age 5. We also used HWT from about pre-school on. We also enrolled him in a Special Needs Gymnastics program when he was 5.
He loved it, really excelled and joined the Pre-team. But the motor dyspraxia got the better of him so we stopped that. He went to a regular public K and had pull-outs for speech, OT , nd the resource room. None of that was terribly helpful. He did get 20 minutes of Adaptive PE and a visual schedule that were.

We are homeschooling and have pretty much just been on our own. No services, no doctors, no therapists, no meds. He is doing great except for Reading and is now on par socially with other peers. I would love to work with a behavioralist but haven't found any close that accept our insurance. He does go to swim lessons weekly. Monica

iVillage Member
Registered: 03-22-2006
Thu, 01-04-2007 - 12:42pm

Hi Monica! Thank you for your reply. We love homeschooling and I really can't see him getting any services in school because he talks so well and I've had the school district ot tell me that she mainly works with kids who can't walk or have huge motor disabilities.

Now that we know what it is, we've learned a lot and can help him in social situations and with his school work. My son can tell you a thousand things about all types of bugs but he cares very little about his abcs. But, I console my self with the fact that he is on par with other kindergarteners right now and is in fact learning.

I hope you can find a behavioralist that your insurance will cover, would they cover a tutor to help with reading? Some of the bhaviourists here do tutoring as well, maybe if it's classified as a tutor someone will help you out?

iVillage Member
Registered: 11-11-2003
Fri, 01-05-2007 - 9:13am

My son is also a great talker with an impressive vocabulary. I took him to our Infant
and Toddlers program when he was 2.5 and they said he had the most developed language
they had ever seen. They estimated he had the skills of 6-7yo at that point. The Speech he received was for "pragmatics" -the social use of language- which is a trouble spot for most of our kids. Pragmatics teach things like how to greet someone, how to have a
conversation, how to agree or disagree, how to change topics. These were all things my son needed but they were *only* addressed for 30minutes a wk with the SLP and a group of other kids who were socially delayed. Because kids with Autism can not generalize learning from one area to another, these issues need to be integrated into their entire school lives -in the classroom, in the gym, in the lunchroom, on the playground. I still do an "Annual Service Plan" for Zach at the school were they continue to offer the speech, but really he plays for a couple of hours a day with his friends so that is the best therapy>

My son had mild gross motor delays -I didn't even know he had these, but a good gym teacher did. He also has dsypraxia which makes it extremely difficult to learn new motor patterns. The Adaptive PE consisted of taking the new skill the kids would be learning and breaking it into single steps so that he could learn it before class.

The thing with school services is that too often you have to fight like crazy to get them and when you do, they really aren't what your child even needs.

Zach also collected and studied bugs, then spiders, and now snakes. He doesn't like the
academic stuff, very active physically, loves to "create" stuff from odds and ends, and is a phenomenal story teller. I really want to get Dragon Speak so that he can dictate his stories into the computer and then print them.

I really felt the weight of the world was lifted off my shoulders when Zach left school. He hated school and everyday was a struggle to get him there then he was exhausted and angry when he got home -that was 1/2 day K! He was making so little progress there I didn't think I could do worse. Since he's been home, the change in him has be incredible!
Everyone from family to our neighbors remark on how much he has matured. I really feel the anxiety school created impaired his learning. Good luck to you! Monica

iVillage Member
Registered: 03-22-2006
Fri, 01-05-2007 - 3:36pm

Hi Monica, my son has been assessed recently by a speech therapist and physiotherapist and neither say he needs their services. I am comforted by the fact my son seems to have conversations with children better than he has with adults, it used to be the other way around. I'm still waiting on the speech therapist's report from the assessment, maybe she will have some speak therapy recommendations and I will go from there.

I guess my son is 'very high functioning' as the physiotherapist put it. The only therapist I think would do us some good right now (and who is taking my concerns seriously) is an ot and finally we will be able to see one.

I guess my relief is obvious, I just hope they click and the therapy helps.

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