Needs Lots of advice needed please regarding - statements/assessments/financial

[pucca]

I have posted here before about my ds (3.7yo) i will give you a little background first, bare with me lol....

Ds has a moderate loss due to glue ear, he has 2 hearing aids, he has very delayed speech and also has behavioural problems, routines - aggression - sensory issues. Also added to this is the fact he has a impacted bowel, he is on Movicol 3x a day and lactalose. His sleep is terrible too, as is settling him to sleep.

He was assessed last June, which they queried Autism/Aspergers but said due to the fact his eye contact was good they decided it was not that. We then went for a hearing test (cock up with appointments their side meant this was delayed) he should have had this done months earlier, they picked up a loss of 45Db in each ear, so i think they put the behavioural probs down to frustration because of this.

Now we are back at square one in a way, as due to me airing my concerns again they are going to re-assess him as there is no improvement at all even though he has been aided since Jan 10.

We went to see a top paed, and he said ds has a severe developemental delay (he doesn't know any colours or numbers and doesn't retain information) and he is going to start to re-assess at the end of April. The audiologist prior to this said yes ds has a hearing loss but no way is his speech problems because of this. Not only is the clarity of his speech really bad (he misses beginnings and endings of words) he also has a pitch issue and stammers.

I could list everything but i would be here all day.

I have applied for DLA for him and been awarded high rate care.I have phoned up tax credits but they didn't say much...will they change my payments?

He is starting school in Sept (will be just 4) and school have already applied for a statement the hearing is the end of April.
I have been sent a parental response form today, do i need to describe everything about ds in this? do they take this into consideration?

Regarding school, i am already worrying about simple things like ds sitting in the hall to eat his lunch, i think even before anything else this will be a problem. Will they consider having someone to sit with him do you think included in his support? he will freak out imo at the noise and mayhem of so many people.

He is also still in nappies - due to the bowel issue, no referral has been made yet but the paed has referred to the outreach nurse team (not heard anything yet) will it be a problem if he is still in nappies for school?

I have so many questions, and so little answers thanks for reading if you have got this far, and i appreciate any advice.

Hi,
I have add2 who will be starting school in september, she has ASD and severe language delay, we are in the process of statementing. If you got to the Cerebra website there are some helpful tips (and possibly and example) on what to write for your parental part of the statement.

Dd2 is still in nappies, this should not be a problem with schooling (a school can not refuse a child in nappies).

The statement should cover lunch times, break times etc (if he needs full time support then keep fighting until he gets it).

We are trying to get dd2 into a SN school as i m worried about how she will cope in MS (even with full support) but we have to wait until the end of may to see if she has a place.

Thanks for the reply Marne...

I will have a look on the Cerebra website thankyou for that, i am just finding everything so confusing at the moment.

hi pucca

marne is right, they can't refuse a child in nappies so that shouldn't be a big issue. I would put everything in the parent report, at least then they can't say you didn't tell them. You can describe what your ds is like when you have lunch out and take it from that angle, how he copes in noisy environments, does he take his aids out when it's noisy? Dd3 will get support at lunch and play times when she eventually does full days, we're not sure if she'll do another year in nursery or go up but just do mornings for a while yet. Hopefully the school will be flexible and do what will suit your ds.

It can take a fair while for speech to come right with aids, he really hasn't had that long. He will have to relearn some of his speech as it will be habit to say things the way he always has iyswim. How are you getting on with the cleft team? At least they are going to reassess, fingers crossed that goes well.

Well done on the DLA front! Tax credits should go up as you then get the disabled child element, hopefully there's a letter winging it's way to you already. You can claim carers allowance if you earn less than about £100 per week, doesn't matter what your dp earns, it's just based on you.

Hi Bigcar, nice to hear from you

I have done the parental response form, and i have put everything in it i did it on the computer instead of filling the form in as there was no way enough room.

Regarding the cleft, they have said he is ok...thankgod. He has been checked by 3 different people so i am happy with that, there was also talk of sleep apnea but that has now been ruled out too thankfully.

I earn just over £100, which is a pain really and i don't think it would be worth cutting my hours, i am hoping to bump my hours up in September when ds is in school.

Thanks very much for coming back to give me advise, you have been a huge help throughout.

ooops advice not advise! lol

good news from the cleft team then! Sounds like you are finally getting somwhere, hopefully the next assessment will go well too. Isn't it always sods law that you earn just a tiny bit too much