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Struggling with autistic son

9 replies

Marie324 · 04/05/2023 11:23

I have 3 boys. My middle son (5) has a severe learning disability and autism with a high level of need across all areas. He has behavioural issues that are extremely challenging and I'm finding it increasingly difficult to find the strength to cope with him. I dread every single day and feel like my life is hopeless. I feel so guilty about the impact on my other children. My youngest is only a baby and has to grow up around constant screaming. The only thing keeping me here is the fact my children need me but I honestly can't see any hope in my situation. I've enquired so many times about respite but nothing is available. My family is crumbling and I don't even know myself. If someone can relate to this situation and offer any words of support or advice it would be helpful. Thank you

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ThomasWasTortured · 04/05/2023 11:35

Does DS have an EHCP? If not you should request an EHCNA. If he does what support is he receiving via that? Does it include therapies including SALT and OT?

Have you had a home OT assessment?

I know you have asked about respite but have you actually had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS. If not you should formally request them, Contact have model letters on their websites. Unfortunately, you will have to push for support.

Home Start are worth contacting if you haven’t already as they may be able to support you, too.

Marie324 · 04/05/2023 12:05

Thanks for your reply. That's helpful thank you. He does have an EHCP and goes to a specialist school. I haven't formally requested a social care assessment as I didn't know how to go about that. He's on a waiting list for CAHMS learning disability team and also front door for families which I think are social workers. Thank you for those suggestions.

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ThomasWasTortured · 04/05/2023 12:14

You should request an early review of the EHCP (on their website IPSEA have a model letter you can use to do this) as it needs to better meet DS’s needs.

Use the model letters on Contact’s website to formally request social care assessments.

Specific therapies and support should be in section F of the EHCP, so if the NHS can’t or won’t provide them the LA must commission independent provision. This doesn’t apply to generalised support from CAMHS though.

Marie324 · 04/05/2023 14:41

Thanks so much. Very helpful

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apapuchi · 05/05/2023 23:53

My older son (10 in July) sounds similar to your middle son, he's non-verbal and profoundly delayed in all areas. He is non-stop from waking until after midnight most nights. He's jumping around right now despite max medications given. I also have an 18 month old who I worry endlessly about as he sees so much challenging behaviour and is a sponge, plus the screaming meltdowns and aggression. I am determined he will go to residential school at least M-F from secondary (Sept 2024) but am not getting any agreement on that. I have to say it seems most children do develop and progress, my son just unfortunately regresses continually and has since age 7. Don't give up hope.

My son is older so/and is finally starting to access a night of respite a month next month, it won't touch the sides and won't change anything when he comes home the next morning. However I asked for it years ago and am glad it's finally been granted. Waiting lists are endless so get social services (disabled children's team) involved ASAP and CYPS LD team etc too. Anyone who might be able to help. You may be able to get direct payments now so a PA can take your middle son out a few hours or stay home with him while the rest of you do something without stress (well, relatively speaking!).

I feel for you, it is a miserable existence and sympathy does nothing to help. We love our kids, the feeling of not wanting them or us to be around isn't something said or thought lightly! Please get loud and insistent on help, support and better understanding of your son NOW so in the future things might improve, hopefully.

Marie324 · 06/05/2023 16:17

Thanks for your reply. In what way does your son continue to regress? My son was doing ok until his baby brother was born and since then he just seems to get worse. He refuses to even come downstairs now and is so paralysed with anxiety he just lies in bed doing nothing. It's so heartbreaking for us as a family. He screams and cries all day long. I'll be surprised if I don't develop some sort of hearing damage from it 🤣 I try to keep things normal for my oldest who is unbelievably accepting and loving of his brother. Yes I have a feeling accessing any respite at all will be a battle for us.

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apapuchi · 06/05/2023 21:16

Marie324 · 06/05/2023 16:17

Thanks for your reply. In what way does your son continue to regress? My son was doing ok until his baby brother was born and since then he just seems to get worse. He refuses to even come downstairs now and is so paralysed with anxiety he just lies in bed doing nothing. It's so heartbreaking for us as a family. He screams and cries all day long. I'll be surprised if I don't develop some sort of hearing damage from it 🤣 I try to keep things normal for my oldest who is unbelievably accepting and loving of his brother. Yes I have a feeling accessing any respite at all will be a battle for us.

Oh gosh that sounds so difficult, for him and also for all of the family, particularly you as you are trying to spin all the plates and help everyone as much as possible. It's wonderful your eldest is loving and tolerant. Does your LA have a young carers scheme? They organise events and support for children with disabled siblings. As my older is the child with additional needs (that we know, my younger son is still very young) this isn't relevant for us right now but as my little one gets older I will look into it for support for him from a group who 'get it'.

My son has always been non-verbal, I suppose pre-verbal for a time (some professionals still say this as I suppose it's more positive) as he used to have single words for a very restricted set of requests (mostly food and drink which is common as they're very motivational!). He now has no words, only sounds which are mostly loud noises, groans etc. If he does try to repeat after you it is unintelligible now, just a random noise. He used to play with a small range of toys, cars, play doh etc somewhat normally. He has never had imaginative play ability but would vroom cars, make play doh snakes etc. He now throws toys as he likes the sensory input from the sound and crash (I think) and play doh too. He has become so difficult with transitions that going anywhere is a nightmare and he tends to lie in the bushes when getting off the taxi at school as he doesn't want to go in. It usually takes a team of three quite some time to coax him in or however they manage it. His self-care has regressed, he has never done anything completely independently but we used to back chain hygiene and dressing and he'd do the final bit but now he's unwilling or unable or a combo of both. He doesn't sleep until after midnight so we do a day from 6/7am until he finally passes out after midnight in which he is either doing nothing or being destructive or melting down in a really distressing and loud way.

I am not trying to scare you. My son had peers who presented similarly when younger who have calmed down, accessed therapies and services which have helped them progress and be happy. My son is really complex and it is really hard all round, for him and those around them.

Knock on all the doors: OT (home adaptations and functional/sensory), CYPS and or CAHMS, keep on at your GP about both your son's needs and difficulties and your own stress and distress at this. I've forgotten if he's under the community paediatrician still? If so, email or call their secretary asking for help. Involve your local councillor and even MP if nobody bothers with you. My local councillor helped us get a disability social worker after the first one assessed him as being 'able to access universal services' as I told her I drove 30 miles each Sunday to take him to a SEND softplay session. Work that out!

I am here any time. Don't let things snowball any more than they have already, you are doing a brilliant job and the job of many which they'll try to leave you doing because you happen to be mum. If services and schools etc reject children with needs like ours because they can't meet need then how exactly are parents who are ordinary folk supposed to meet those needs and sometimes on a 24/7 basis while being an emotional and sometimes literal punching bag!? That's my question! He's your son and you love him but he and you need the support of others to care for him and keep you sanity and health. The mythical village would be amazing but as it is, many of us have to fight tooth and nail for services to be that village for us - or at least as close as we can get.

apapuchi · 06/05/2023 21:17

With regard to staying in bed, the screaming etc, do you have any concerns about his physical health or do you think it's all anxiety-related?

Marie324 · 19/05/2023 13:44

I'm sorry it's taken me so long to reply. Our family have been going through a tough few weeks. Our sons sound similar from what you describe. It takes such a physical and emotional toll on me, I'm not sure if you feel the same. We found out today we have been allocated a social worker so will wait to hear what they have to say. Thanks for your insight. It helps to know I'm not the only one going through it.

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