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
I’m so sorry to hear you’re going through this. I can’t even imagine the day to day stress you must be under. Perhaps you should confide in someone you trust about the suicidalist thinking you went through, even just to get it off your chest. Samaritans if you don’t want anyone you know offline to know. Would it be social services who would potentially offer residential care to allow you some respite? Maybe that isn’t something you want though despite the challenges. Must be so hard to know what to do for the best. Im glad you did not give up on life. And I hope that others here can offer you something more practical than my mere words of empathy. I’m not a parent but others here are. I just didn’t want you to have no responses before the morning as that’s a lonely thing in a time of great distress. Please hang in there. You are stronger than you know. You’ve already proven it.
We have social services involved now. She isn't the disability side as he got turned down as based on his ehcp (now being completely re done).suggests he's not disabled enough for respite. She tried her best though bless her. Just stuck in limbo not getting anywhere. He is getting worse by the day as no therapy and we are just existing kit living.