Ds 10 never a word spoken

[PinkChaires]

Hi, my ds has never spoken a word.
Diagnosed autistic at 2. Really struggling these days with violent behaviour towards himself and hate thinking about future. SEN school a bit useless, they just don't know how to deal with him and they won't work with us (for example they have been useless in getting him an aac device despite them saying it will be beneficial for him)His understanding is low but getting better this past year. I have to give him CBD or else he would literally make himself bleed. Anyone else in the same boat? I feel so alone as I don't really know any autistic children at this level

My youngest brother who now lives in assisted living doesn’t talk and is autistic with global development delay. They give him Risperidone to control his moods and to stop outbursts, he’s been known to severely attack others from a young age up to adulthood he’s 20 now, started Risperidone at the age of 12, while still living at home alongside melatonin to help with sleep.

You should not be medicating your child without a doctors advice - and no doctor would advise you give off the shelf CBD, aimed at adults with unknown quality and quantity to a child for ASD. Nor would they prescribe it for that.

Unfortunately help for people in your position is completely shit, you're at the end of your tether, you're dealing with violence, scared for yourself and him and are not getting anything like the support you desperately need.

I think you need to speak to your Dr and see if you can get something properly prescribed for him. CBT can affect the liver and imagine how you'd feel if you caused it. Also speak to his school and tell them you're not coping and you were wondering what was holding up the AAC device. Go in and speak to someone face to face if you can as it's easy to fob you off on the phone or by email. See if they can offer any other support or suggestions while you're there.

Talk to SS they need to know about the violence and that you're struggling, they might be useless but at least there will be more professionals with an awareness of your situation. Speak to them about respite as well. It will be like hen's teeth but you need it and should request it. You're being failed (like so many others sadly) and I hope you get the support you deserve one way or another.

I second social services, my brother had to have support from them and they did help especially with respite care.

Thanks , hes only violent towards himself. Hes so gentle with the rest of us . I am scared to get social sevices involved. CBD i am slowly weaning him off but what other choice do i have? The medication side effects honestly scare me , they seem to be much worse than CBD

What is assisted living? Do we still see him? Is your brother happy?

Assisted living is a home that’s owned by a care company that looks after my brother 24/7, he has day time and night time carers. It’s a big house and he lives with other disabled young adults. He has his own room, access to a wet room, huge garden etc.
it got harder for him to live at home due to the violent outbursts, and unfortunately there was no other option for him other than him go into assisted living. My mum was severely attacked by him and she’s now disabled with a walking stick. He of course couldn’t help it as he’s severely disabled but it does take 3 people to look after him and my mum was on his own. It took a while for him to settle, he’s been there since he was 15. His special school couldn’t handle him either and they dropped him down to 2 days a week when he was 17. He was allowed to finish school at 18.
he is very happy and yes we can visit whenever we like and make sure he has gifts, clothes, toiletries and sensory equipment.
he has an amazing schedule, they take him on outings and car journeys and he has a trampoline and his own pool in the garden as he’s liquid focused with his sensory needs.

Social services were very helpful btw and they were the ones that helped him gain his place into assisted living. They are there to support you, and with the respite care they organised 2 carers twice a week to collect my brother to take him out for my mum, that was school holidays as well. Please ask your sons consultant for the medication to help with his moods, it helped my brother massively and he only has huge meltdowns now very few far between.

Thanks makes me feel much better. I just want him to be happy and live a good life but right now he hits himself quite hard. When hes not having a meltdown hes such a loving boy

Sounds like you need an early review of the EHCP and potentially a change of placement. IPSEA has a model letter you can use.

Is SALT and use of AAC detailed, specified and quantified in F? Is any MH support included? What about OT?

Is DS already under CAMHS &/or a paed? If not, has a referral been made?

Another one saying request social care assessments. A carer’s assessment for you and an assessed by the children with disabilities team for DS. Contact has model letters on their website you can use. Also, look at your LA’s short breaks offer.

Review done for this year. Aac is not detailed , i would just like to start the process of him getting one. All OT etc is meant to be done through school

Sounds like the EHCP is poor and needs improving. Unless SALT, AAC, OT etc. is detailed, specified and quantified in F, it doesn’t have to be provided and can’t be enforced.

It is worth reading IPSEA and SOSSEN’s websites to understand EHCPs better,

When was the review? Do you have the right of appeal, will you get the right of appeal shortly or was the review too long ago?