Parents of children with ASD!!!

[Anna85]

Just wondering what kind of help/support your DS/DD gets in school?

My DS is nearly 5 and is Reception. Throughout nursery he had assistance from a Behaviour Unit who seems to think he has made improvement if only little steps (which I disagree) and after a meeting yesterday they surprised me by saying this support which cease today!!! Nice for the notice!!

Anyway my DS behaviour in school is not good and is very challenging. At the moment he has a IEP and has 2 hours shared 1-1 with 3 other children all with different SN.

I feel that he needs more. Unfortunatley I have been told he is too on the High Functioning side to be in a different school but a daily school life is a battle!!

As a parent I feel really frustrated about the lack of support (which I am sure I am not the only parent to be).

He now have to wait for a referral to our local County Inclusive Resource Team which my DS case will not be discussed until February!!!! So cannot apply till after then for a statement!!

I ask everyday how he has behaved and I think they are getting fed up off me but after all I just want what is best for my son!!

Rant over! Sorry! x

You do NOT have to wait to apply for a statement.

you can do it yourself, today. Google IPSEA, and have a read. You are in a better position if you do apply yourself, with regard to appeals if necessary, so don't waste any time!

There are model letters on the IPSEA site, and ask away here - there are many of us who have gone through Statementing/are going through it.

With regards the school/high functioning side of things. I would say have a look around as man schools as possible in your area. do not exclude any just for reputation/supposed intake levels etc. as you go around, try to picture your ds there - would he fit in? can you see another child like your ds? etc

As you are finding out, you are your son's best and only advocate. No one in the LEA will tell you even half the story - they will be too busy trying to juggle budgets.

Read up, be informed, and start the fight!

I have sought advice on statementing etc and been told for our local panel to agree to a statement, the school has to be seen to have done everything possible before a statement is necessary! And this would include the referral to County Inclusive which hasn't been done yet!!! :-(

who told you that?

if the school is not meeting your son's needs, then he needs more help.

the only way to access this help is to have a full assessment of his needs, and then have those needs addressed in a statement.

you do not need ot progress through school action/school action plus, or wait for any other panel decision.

it may be a battle, but it is one you need to fight, if your ds needs extra help.

my dd1 went from shared support in pre-school, to a full time position in a highly specialised SN school - no bollocks about extra help form the school etc.

the whole purpose of a Statutory Assessment is to assess what needs the child has - the LA cannot apply blanket policy and say they willnot assess until you have progressed through some obscure panel system - that is illegal.

Speak to IPSEA, they are really good.

Anna

You have been seriously (and prossible even legally) misinformed.

YOU can apply for a Statement at any time.

If they are lying to you about this they are probably lying to you about the extent of your child's difficulties.

I would apply now

I have 2 chidlren with ASD, one with dyspraxia (an associated disorder)

DS1- gets a TA 16 hours (just bumpd up) which includes 1-1 at all breaks. Nothing else- no behavioural or ed psych input. He is up for a palce at a specialist AS school in year 7 (next year) but so are 37 others for 2 places.

DS3 has a palce in a unit, general SEN though in fact in relaity it is all children with ASD. He gets SLT regularly and music therapy as part of school. If he goes into MS (depends on how he is, what's ebing done etc) he gets a 1-1 or 1-2 TA.

DS2 gets sod all, the funding was spent on RE and they refused to refer him for help, taking him off the SEN register after 6 montsh as they couldn;t help us. bastards.

Can I advise you call SOS!SEN OP? theya re great, google their number.

yes they are telling you crap, we were told crap and applied anyway and were given the statement.

Don't beleive LEAs. Ever.

DS is just 4 (starts school Sept 2011). Has moderate ASD. Is verbal but severely delayed with language, is quite passive although some toddler tantrums. Poor attention. Very distractible. Very little social interest in others. Lots of repetitive behaviours which interfere with learning. In nappies. Ahead in some areas (mainly academic rote learn skills eg can read many words, count). Average IQ. We had to fight all the way - initially were fobbed off like you. Also told too bright for special school. We got a statement at 3.3 for 100% 1:1 in mainstream nursery (12.5 hours a week) + termly SALT and autism outreach. Made no progress. Recommendation (ignored by LEA) was for specialist teaching so we did ABA privately at home, demonstrated good progress and we appealed statement to tribunal and won 35 hours a week ABA, 48 weeks per year (at home and in mainstream nursery), 12 hours a month supervision, termly consultation, ABA training for mainstream school when he transfers in and hopefully if we can hold onto statement 100% ABA support in school. We were repeatedly told by everyone we would not win - son just needed mainstream etc but tribunal saw that there were no autism specific programmes or systematic teaching in place and that mainstream had failed him big time. Trust your instincts. Even Parent Partnership basically fobbed us off as son too young / give mainstream a go etc. My son lost a year and a half while we got through the system and that was largely why we won everything we asked for because the tribunal could see time was running out and for mainstream to work (and the alternative is a SLD school as everything else has been shut) we had to have ABA to have any hope of him getting to school next year. Don't waste time if the resource team is anything like our autism outreach it was a load of generic b***ks with insufficient time to give anything other than basic autism awareness advice.

Just adding my voice to those who are already telling you to go on and apply for statutory assessment yourself.

I am doing so, and I don't even have a DX yet. Am already learning the tricks! I have the support of pre-school, the communication and interaction team who are working with us and (apparently, although I shall believe when I see it) the LA's educational psychologist (well, that's what she told me, there's a query outstanding as to whether she's qualified yet....a whole other story).

I have also found quoting a few bits of the SEN Code of Practice helps stop these "you can't do X, Y, Z" comments...because they know that YOU know they are talking rubbish!

Best of luck...am off to finish my Appendix A "What are your hopes and aspirations for your child"...

Starlight- i wish i could get all that on a statement for dd2, so far this year (from sept) she has seen SALT once, been refussed OT twice and has had one visit from outreach, her statement states 15 hours support when part time and 30hrs when full time, she is now full time and still not getting the 30hrs so i have to take her out at lunch time.

Dd2 is HFA but has severe language delay, she rarely talks, has no sense of danger and eats everything she lays her hands on yet, her school will not provide her with full 1:1 until they can get funding to do so, i am now considering taking her out altogether.

Thanks Starlight, i have been trying to get my head around it all today, i'm so stressed at the moment and i almost lost it with dd1 tonight . Dd2 is now poorly so will be home again tomorrow. Someone said that the school has 3 moths to sort out any support on the statement, is that true? and does that meen the school has 3 months to sort out 1:1 for when she's full time? The school seems to think they are doing everything right/by the book. Dd2 has a review of her statement 3 weeks ago, at the meeting the SENCO said she has applied for funding for the 30hrs but then i spoke to her a few days ago and she said she only applied 2 weeks ago and it was for funding from Jan (next term) . So i phoned dd's case worker and she didn't seemed bothered about the lack of support but agreed that dd2 needs some OT involvement and maybe more support at lunch time, she then said she would try and get a report written up by christmas .

I think i will try and make some phone calls tomorrow but i'm not sure if there is much i can do until she returns after christmas (see if she gets her 30hrs then). I think i will be keeping her home next week.

Marne If the LA wrote the statement they should have given the school the funding from day one. If tribunal write it they have 6 weeks. Do ring local Govt ombudsman as they can intervene if provision is being withheld. The funding split between LA and school is not your problem. Tell Lgo you may have to Take your child out of school if 30 hours is not in place as they will then hopefully accept case even if you have not been through complaint process. Even an email from Lgo to council may be enough to kick start things. If Lgo take it up will also take pressure off you to resolve it as caseworker will do the liaising.