WHY is it so HARD toget DS dx'd and get him help he NEEDS? {sigh}

[SammyK]

I am so fed up.

DS is 4, has Aspergers, Dyspraxia and developmental delay. I don't need a piece of paper from a doctor/panel to tell me this but realise a dx opens a door to sevices, help, etc.

School and I raised our concerns with LEA EP who dismissed DS, saying he can cope til h is seven, this was last year and now school have finally conceeded that he does need 1:1 (his nursery teacher and I have said this from day one), and they are gathering video evidence now so edpsych can assess him. I think they have realised I, and thankfully his teacher, will not be backing down and quietly going away!

At the stage last year were edpsych dismissed our concerns I went to my GP and got a referral to a developmental paediatrician at a multi agency autsm clinic. The DP has assessed him, myself and his teacher have filled in GARS forms, and DP has now told me the next step is Educational Pyschologist {bangs head against wall} and ESPD for physical aspects to be diagnosed (school sent for this referral at last meeting I had with them).

DP asked if I wanted sleep medication for DS the other day.

SALT saw ds in November in his school, I assumed she was seeing him at school regularly - no. She hasn't even sent a programme in for school to do with him. Also still waiting for community SALT referral as well as school based one (referred in Oct).

Meant to have had an individual health visitor since Nov (instead of a general team of HVs), keeps cancelling visists, doesn't return my phone calls, turned up today over an hour late without calling. I had given up and suited and booted 3 kids to go out to library. She has rescheduled for a fortnight but has told me she is leaving her jb mid march so why bother giving her our story so far only to have another one to tell in march.

My community nursery nurse is the ditziest woman I have ever met, she means well but I haven't found any sort of practical use for her as of yet. Was referred to her for ds's toilet phobia which school senco has been of more help with.

DLA form was soul destroying but I got through it and sent it off, and they have sent me additonal Q's which are obvious and do not need asking.

I feel so tired and drained. Why is it soo hard to sort all this out for him. He is a little boy who needs help and no one seems interested.

Thank you if you have read all of this. I know it is self involved when other parents have such bigger troubles, dcs with serious health issues or troubles, but I feel soo fed up.

oh sweetie,

I am tired of it all and want to give in and go hide in a quiet corner somewhere but DS keeps me going. He is struggling and needs help.

it is a v slow process... dont give up hope...

Firstly big hugs (I dont care if I get flamed I think you need hugs)

Secondly, I was talking to a lady at a NAS meeting yesterday, I have seen her a few times, she is also struggling and said its because they have said they wont dx until her little one is 7, he is about 3 now. I think maybe As is very complexed to dx from what I have heard and read.

Have they not mentioned Esap funding to you. Its just my comm paed said they could get 1-1 virtually straight away as she would recommend this. She did ask about the ed physc but mine has broken her ankle and we are still waiting this was goingback to last year.

I also think, you have done a wonderful job so far and think the vid footage is a fantastic idea.

Could you also maybe apply for a statement through IPSEA.

Sorry if any of this is no use, but didnt want to read and run, you sound at your wits end

I am naturally impatient and proactive so I am finding it maddeningly slow.

I do think I am losing hope, this is it isn't it - an ongoing frustrating process.

I feel that everyone whose phone I am ringing, that I am writing letters to and attending meetings with don't actually care. Life with a disabled child is emotionally harder anyway, we shouldn't have to fight so hard to get them basic help.

I have done the IPSEA letter requesting an assessment, this s when I got the reply that Edpysch felt DS should cope until 7 and then be assessed. At the time he was 3. 4 years of not coping, but actually finding the school experience frightening and extrmeely upsetting is just not acceptable to me and thankfully the school agree with me. His teacher suggested video footage to show how hugely upset DS gets at the smallest thing.

Apparently (my community nursery nurse) has told me, a child's development aged 7 something clicks in their brain, and it is only after this point that they can be sure it is AS. Bollocks. DS is a walking textbook case and is not magically going to turn into an NT child on his 7th birthday.

I have not heard of ESAP funding for 1:1 so will look into that thanks. Adds that to wheel chair services, two phone calls to make tomorrow.

I bet I am on some kind of annoying parent list they email to all NHS and LEA staff.

Sorry just googled it for you Sammy, not sure but it could just be Lancashire as thats all I can find, surely they have it elsewhere, its the Ehanced School Action Funding Plus. Where abouts are you? I will see if I can find any more info.

I am in Hull.

sammyk i understand where you are coming from and you can have a BIG HUG from me as well.

DS wasnt dx,d until he was 9 by which time he was out of school as a result of school/LEA refusing to take our concerns seriously.

Same with DD,we went to tribunal to get her assessed but we didnt win,shes now using every trick in the book to get out,last week she told her teacher she was in pain and was crying so we took her to a dentist that day,but he said nothing wrong,then later she told me she hadnt wanted to play out at play time.

she has a private dx of PDD-NOS and we are currently battling CAMHS to dx her,and we wont give up.

Dont give up, a very nice SN HV told me a couple of years ago, "off record" that the parents who "shout the loudest" are the parents who get the dx,s and support, which is what we are trying to do,i get very very impatient as well like you, its not fair is it.

Hmm, been looking but all I can find is Lancs, and kingston at the moment. Perhaps might be worth asking about though, yours might be under a different name.

Surely it cant just be Lancs, maybe someone will know on here.

Sorry Sammy, I feel I got your hopes up there but honestly didnt know.

Don't worry alfiemama, DS is on school action plus so I will ask around.

It's surprising how often you find out abut things with like this from other parents, authorities seem to keep it all secret and then fight over it in a petulant 'no you're not having it' way.

I want ot thank you all for replying - MN has been such a huge support for me, it has really helped to have a rant and get it all off my chest.

I am definately oneof those 'shout the loudest' parents. Im sure they are all sick of me already.

There are schemes like enhanced school action plus in other authorities but they have different names for it. Also emergency SEN funding maybe available ask the SENco for information.

Phew! thanks for that wassup3000, I was feeling very guilty.

Sammy I think you have to be heard these days, you shouldnt have to be because people should do their jobs properley but they dont hence why sites like this do a good job.

Saying that I think these schemes are not in all authorities but some. On the one hand they are quicker for gaining funding than getting a statement and on the other your child may need a quantified statement to meet their needs so look at what is available carefully of course.

I am going through the same thing atm Sammy it's so frustrating isn't it!!