Acquired brain injury for my DS, am i in the right place?

[OohAahBird]

So the very short story is we were in a serious accident last year and my son was badly injured, he came out of hospital at the end of this year and we are now negotiating the world of a child with special needs. While trying to come to terms with everything that has happened to us. He Is only 6 and is also trying to come to terms with what people politely refer to as life changing facial injuries.

This must be such a big adjustment for both you and him. Are he & you getting support in real life?

We have friends locally who have been really supportive especially while we were in hospital with him for so long, and we have the child brain injury trust who are fab, but people don't really get what we are going through and we have yet to meet any other parents who have been through anything similar, he is a very different child, his personality is very different and for his sisters its a bit like we brought home a stranger who looks like there brother did.

That must be really tough. Are you getting help from social services and with education? Does he have an EHC plan?

ECHP,is going through at the moment but i have yet to see a draft, and am waiting to see whether they are addressing everything, its very complex from a medical point of view, even excluding the brain injury.

Had a phone assessment with someone from social services, but apart from promising to chase up OT they dont feel they can offer anything at present, our daughters are traumatised by the accident and then being separated from us for so long because he was too ill for us to keep them with us (he was in paediatric intensive care for nearly a month and then had months of rehabilitation) and he wouldnt cope without us at present either, so respite isn't really an option.

Glad that the EHCP is being processed and that you are on the ball with regard making sure everything is taken into account. One thing I would say is that only the education parts (think it is E and F) where educational needs are specified and the required provision is listed are legally challengable. As far as I recall, the care aspect / health part is not, so it is worth trying to get as much in the education part as possible, eg OT, / physiotherapy and pointing out that these are all necessary for him to access education. Will he be returning to the same school or a different one?

He has gone back to the same school on reduced hours with emergency funding to have 1:1 support, while the ECHP is being done

It's section B where educational needs are supposed to be set out; Section E is outcomes (across education, health and care), and F is support. The Code of Practice does set out that medical and care needs and support should all be fully specified, but at the moment you can't appeal to the tribunal to enforce that. However, he comes within the definition of being a child in need which means that the LA should do a thorough social care assessment anyway - bear in mind that social care support isn't just restricted to respite care.

Strictly he's entitled to full time education, so if you think he can cope with it you could push for him to have home tuition to cover the time he's not in school.

Incidentally, can you claim compensation for him arising from the accident?

It's good he's getting 1:1 support at school. It must be really hard because, as nice as people are, they don't really understand what it is like to be in your shoes. Do the Child Brain Injury Trust have any online forums or anything where you can link up with others who have been through similar?

Thanks for clarifying that Ceto.

Tadworth court which is a neuro rehab unit has an online forum, but its very quiet and very few posts, which is why i thought i would see if there were any other mums on here, i used to be very active on here about 11years back, but took a break and never really came back.

He cant cope with any more hours at present, he cant cope in the classroom most of the time, too much noise, action and can't concentrate, though that will improve over time, but with brain injury fatigue is a large issue for a long time. When we first got the emergency funding he was only just managing 1.5hrs, we are now up to 3.
We had medical access to education at home initially, but was only getting 2hrs a week.

But to be honest with physio and other rehab, and medical appointments we would struggle if he was back full time at moment

Hi OP
Just popping in to signpost you to the charity "Headway" www.headway.org.uk in case no-ones told you about them. They've been a great support to a family I know whose son suffered serious head injuries in a rta.

The Cerebra website is quite good too.

I am sure you have but just checking that you have claimed DLA for your ds, Carers Allowance and tax credits if you can.

Hello oohahbird, I can't offer you any advice as you're further down the process than we are. My daughter suffered an acquired brain injury at the end of last year, she's not expected to return to school until September so we're a little behind you with regards ECHP etc. I understand a lot about what your saying re neuro fatigue, changes in personality, fitting in all appointments (we have MDT's, physio, OT, orthotics, speech therapy, psychology, Botox clinics etc etc). If you want to chat please feel free to message me on here.

Yes you are in the right place and welcome

I'm afraid I have no specific advice re acquired brain injury as my ds has ASD.

However I can relate to finding your own sense of normal and re calibrating your life. I think if you feel what you are doing is right for your family and for all of you then you carry on - no one fits a text book despite the professionals wishing we did!

You sound on the ball with ensuring your Ds gets the right EHCP issued which will be a big help as that's legally binding.

I'm a big believer in children learn best when they are ready to learn. So if physio and downtime is needed and that allows your ds to learn for an hour that hour is far more productive if he's engaged than 3/4 hours of him just being present in a classroom to tick a box of attendance on a register.

Hi, my DD has 'brain injury' through a rare neuro disease. It's not the same as your situation but I relate to things you were saying. I guess my words of wisdom would be to fight for what you think is right for your DS. Have confidence that you understand him best.

I think that the most useful thing we did down the EHCP path was to get a neuropsychology assessment. It depends how severe and obvious his difficulties are, but for us a lot of the issues were subtle, and none of the other professionals involved 'got' them. The assessment pulled out eg neurofatigue was real, anxiety was real, processing information was affected etc. We had said all this as parents, but it wasn't really taken on board until we had that written by a Dr. The other thing that we've had to push against is the insistence to be working to full time school attendance. Eventually we got her signed off to attend part time long term by paediatrician, but it was complicated to get to that place.

I'm not active in any charities (mainly because my DD's disease is so rare that there isn't one). The ones pointed out above look useful though - I tend to just read. Facebook groups can be good. I get a lot of general SEN info reading here, and from eg IPSEA.
Feel free to PM if you want.

Buntingsmum
Cerebra and the CBIT child brain injusy trust should both cover you and cbit have been amazing and cerebra have lots of books you can borrow for free

Had multiple neuropsychology assessments as he had PTA post traumatic amnesia after he was brought out of the induced coma.
Tbh due to the severity of the brain injury and physical injuries we have lots of medical evidence and we got emergency funding from LEA for him to have 1:1 at school, but hospital had said he couldn't go without it and we had Medical access to education initially till it was organised.

Am working on DLA oh my its epic and it doesnt help that he is still under 9 consultants in 3 different hospitals and has had so many tests that its taking an epic amount of time to compile it all.

Oohaahbird, I've just completed my DDs PIP forms (moves from DLA to PIP once they're 16), it's very sobering when you write down everything on the forms as to how much your child has/is affected by their ABI.

Buntingsmum, my daughters cause if her ABI is quite rare too, I've only come across one charity by chance in the UK and that just doesn't solely cover her condition. I also get most of our support and info from FB groups.

That's a lot of consultants oohahhbird! Make sure that you copy it before you send DLA to at least make next time less epic. It's good that you have so much 'evidence' - hopefully things will go smoothly and you will get the support he needs long term. Make sure you look after yourself too.
The charity "changing faces' came to mind just now. Perhaps a longer term thing, but they were fab for a friend with DD with facial issues.