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chessxcore
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11 May 2011, 5:17 pm

My name's Tim I am a full time stay at home dad to my 3 1/2 year old son named Loki who has been diagnosed with autism. Loki is non verbal, i started signing with Loki a year ago, he responds to some signs but doesn't use them. We have been doing floortime 5+ times a day, Loki is a very happy and extremely active little guy. A expert climber. We keep locks on all the doors, a big metal gate blocking off the kitchen, we have gotten rid of most of our furniture and replaced what we could with over-sized beanbags. He is the most physically fit toddler i have ever seen, his balance, stamina, strength is astounding. He recently has been showing some joint attention and has been playing appropriately. Loki has been GFCF now for 6 months and it was literally overnight we saw the improvements in his mood.

Whenever we leave the house I generally have to carry him. If I'm holding his hand he is dropping continually to the ground, if i let go of his hand he is darting off. He was in early intervention and and now is receiving services from the school system. A OT, ST, PT(which i know he doesn't even need) and teacher come to the house. He also has OT and ST outside the house. He has a TSS that comes to the house M-F for an hour a day. My biggest issues are with the TSS.

She started 3 months ago now, she was just hired then so i know she is new to this. When she is here she sits down and tries to get Loki to come to her and sit with her and play appropriately with his toys. She dialogues everything he is doing in full sentences, and using a vast vocabulary. Shes in his face continuously. I can see how much it annoys him. He doesn't sit to play while she's here for more than a few minutes at best. When she's not here i can get him to attend for 20+ minutes.


Loki has troubles when it comes to falling asleep and occasionally staying asleep.
Today Lokis TSS provider had a ISPT meeting, Loki was up from 1 am to 7 am and had only been asleep a couple hours when they showed up. They insisted on waking him up, I was a little agitated, but went ahead and tried to wake him up. He eventually woke in a foul mood. They observed him for 15-20 minutes yelling and crabbing reaching for me to pick him up and hold him.

Should i be looking for a new TSS provider? I have mentioned my opinions on how the TSS could best work with Loki, they go unheard.


I have started using PECS, i am still learning while practicing floortime, i have read Could It Be Autism?: A Parent's Guide to the First Signs and Next Steps, The Verbal Behavior Approach: How to Teach Children With Autism and Related Disorders, The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder and The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing Disorder. If anyone after reading this has any other reading recommendations that you may think we could benefit from it would be greatly appreciated.



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11 May 2011, 5:41 pm

Hi!

I will probably delete the following in a couple days cause they're not "my" anecdotes to share necessarily.

Anyway: my sister, who does NOT have any form of autism, was always an expert climber who early on figured out how to escape her crib, and she wandered off on her own away from, my parents often when we went places. She was extremely independent-minded and stubborn.

I think everybody's different and it sounds like Loki has a lot of different rehabilitational therapists and to be honest - well, yes, if he continues to be nonverbal he'll need some help in that area obviously so he can eventually communicate, but also, some things probably won't change cause they're just ingrained personality traits, which I see as a good thing cause it makes the world more interesting.

So obv. I'm no expert but if the therapist(s) are trying to fit a square peg into a round hole, maybe you should look for therapists who work better with Loki. Or consider whether certain tendencies of Loki's are even in need of therepeutic remedy.



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11 May 2011, 5:54 pm

I am not qualified to give you advice, but I would say trust your own instincts. You are the one who can best judge as to whether the therapy your son is receiving is useful, and whether you should seek out a different therapist.



chessxcore
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11 May 2011, 7:37 pm

chessxcore wrote:


Loki has troubles when it comes to falling asleep and occasionally staying asleep.
Today Lokis TSS provider had a ISPT meeting, Loki was up from 1 am to 7 am and had only been asleep a couple hours when they showed up. They insisted on waking him up, I was a little agitated, but went ahead and tried to wake him up. He eventually woke in a foul mood. They observed him for 15-20 minutes yelling and crabbing reaching for me to pick him up and hold him.



On a kind of unrelated note, during this ISPT meeting the TSS supervisor asked about my spouse and when she was due - end of June. She then asked if we had everything that we needed for when our daughter would be born. She said that she could report us if we didn't.

(I explained to her, although i really was agitated to even have to explain my spouse has a baby shower at
the end of this month, my mom and sister were going to order a couple things for us, and that if need be i have money and my spouse has income) then she asked are you getting SSI yet for Loki?

This has absolutely nothing to do with Loki, and i must say I was kind of offended to have to explain this to her.



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11 May 2011, 7:56 pm

Hmm, yeah, I don't know what a TSS supervisor is but it sounds like what she said was completely out of line. I would be looking into finding a new one if I were you!