Published on 12, July, 2020
My son was diagnosed asd in 2019, we coped quite well. Got an ehcp and he was thriving by the end of year 2.
Fast forward to Nov 2021, he suddenly started with a sensory issue to tissue. Then it progressed to wrappers on sweets, crisp packets. He started to bang his head in response.
Then it was foil, burps and any form of plastic. Lots of support at school too, but it became so severe we started part time schooling last summer as the food smells from dinner Hall even in the air triggered his self harm.
Now he headbands constantly every waking minute every 30 seconds. Triggers, it will be very very hard and cause damage.
Despite of this and all the professionals and meetings between around 20 people.
Referral to medical paeds x2 declined
Cahms declined
Occupational therapy declined but now on waiting list
Social services can't help
Ehcp been scrapped and new one written = 20 weeks
We are exhausted. He's harming, his sisters have no life but yet there is no one who can advise us what to do!!
The summer holidays I fear I won't cope mentally at all, I kept quiet last year about almost taking my own life.
We can't touch plastic wrappers, cook with doors open, burp, sing, even use toilet paper. His young sister gets hit if she even talks somedays. All documented too
Thankyou to everyone who's responded. I have changed our life to completely adapt to Jack's needs, I'm his trusted safe person when in crisis, limited absolutely all triggers but it seems like he's getting more anxious every week. He also has an element of pda, so any aids to reduce overload like ear defenders etc he point blank refuses.
The headbanging is more a habit now, and when a trigger it's so severe. He will do it very hard and alot even when he's crying it hurts. Trying to restrain when it is bad he gets worse.
I'm more worried that no professional knows what to do either, except he's complex..
Kids have certain rituals. My brother always kicked the location, while he fell or tripped, while I itch in one area; then scratch the mirror opposite location in my body.