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Special but not too special - HFA Child dilemma

(17 Posts)
AllSquaredUp Tue 18-Oct-11 13:22:10

Facing huge dilemma with my asd DS situation - whether to get statement or not? Private school or state school? MS or SU in MS or SS? ( sorry this is a long one)

DS would be starting reception next Sept, awaiting diagnosis for ASD/HFA/aspergers, he is a very bright, lovely child and well ahead of peers in many areas. However has severe communication difficulty, his speech is delayed, he doesn't make conversation, he avoids his peers and has no friends.

Everyone I have spoken to in child services/LEA says he won't get a statement. But They all agree he needs support. He is currently goes to preschool at a private school. We enrolled him there before we realised he needs extra assistance and contrary to our belief/assumption the private school is not willing to put in extra effort to build/work with his communication style/issues. we found out they do not have right skills/awareness/attitude to work with him.

I feel awfully terrible and responsible about the situation he is in and want to get it right and ensure he gets all support he needs when he starts school. need input from MNers..

1. Do HFA children get statements?
2. Is MS school or special unit suited best for HFA/ASD child?
3. Your decision send your asd child to special unit - what was it based on?
4. If no statement - what are other options?

communication is big issue with my child, he never talks about his school, we would never know if he likes it or not Or something/someone is bothering him. On occasion he has lashed out and it is very easy to misunderstand him.

How do i ensure he gets right support? Should I apply for statement ? If statement is rejected what are my options? can't make out what is right for him as I have got it wrong once ... Pls pls advice

IndigoBell Tue 18-Oct-11 13:53:51

First of all you need to apply for a statement.

He may or may not get one. There are no real rules.

Just apply and see what happens.

If he doesn't get a statement then your only option is MS - so at least that'll make that decision easier smile

AttilaTheMeerkat Tue 18-Oct-11 14:15:59

Would apply for the Statement in any event and as soon as possible. You don't have to wait until next September. If a special school was for instance needed, your son would need a Statement in order to attend such a school.

I would say go all out to obtain a statement for your DS as apart from anything else such a document is legally binding. Would also keep to the state school system rather than private as private schools do not fall within the remit of the LEA.

If I had a £1 for every tome I have heard this or similar, "Everyone I have spoken to in child services/LEA says he won't get a statement" I would have enough money for a plane ticket to NYC now!!!. Who exactly have you spoken to in this LEA?. Such is designed to put off parents, parents whose children really do need extra support, from applying. Ignore such naysayers!!!.

If it is rejected you can and should appeal their crass decision.

IPSEA's website is helpful re the statementing minefield Use all available resources open to you.

AgnesDiPesto Tue 18-Oct-11 14:18:04

Yes you can get a statement.
Children can have severe deficits in language, social communication and be ahead in other areas.
My DS has just gone into school (nearly 5) and sounds similar. His autism is mod-severe but he is very bright.
He had fulltime 1:1 in private nursery + SALT + autism outreach and this was not enough. We did ABA privately at home alongside and then when SALT and outreach input was going disastrously wrong we put ABA support into nursery. We only ran a very part-time low cost programme. We were able to show enough difference between mainstream offering and ABA to win ABA at Tribunal.
DS now gets 35 hours of ABA support and goes to mainstream school for 3 half days and does the rest of his ABA 1:1 at home. He will build up in m/s over time.
This works brilliantly but was very hard and stressful to win at Tribunal.

He is clever enough for mainstream and benefits from the children - but only with the right support to teach him how to interact etc. We have found nowhere locally which had the skills to teach him - all teachers and TAs only had very basic awareness training.

We would have looked at a unit / SS but there are none near us.

LAs are trying to reduce statements or delay parents applying, but your child sounds like he would fit the criteria. We were told in the same week by the paed DS was the most severely affected boy he had ever seen and by the SEN officer he was too mild for a specialist placement. Which just goes to show that people tell you what fits their agenda. We were told we would never get even an assessment, or a statement, or fulltime 1:1, or ABA - and we got all of these.

You could look at dual placements eg PT MS / SS too.

However there are some mainstream school nurseries / private nurseries that are good with ASD but you need local recommendations really.

Does he get any state funding for his place? Any 1:1? Do the LA put in any funding?

We have the ideal scenario which is a very autism specific approach and very well qualified staff working with DS at home and in mainstream. He would now be too advanced for the local MLD SS. But too autistic for mainstream without specialist support. So we have in effect a specialist education delivered partly in a mainstream setting.

You can apply and if you get turned down - and you probably will its a standard tactic - you appeal. It will take months to get to tribunal by which time we on here will have helped you collect the evidence you need wink.

You might want to look to moving to a mainstream pre-school if only so you can say you have tried that and it has failed before you appeal for anything specialist. Will your outreach service go into the private nursery and work with staff there? Or will they only go into their own settings? Usually you have to show a child has exhausted the cheap provision before something more expensive is put in. If any of the schools have a unit then that would usually be a good choice as you can get fast tracked into the unit from nursery.

AllSquaredUp Tue 18-Oct-11 14:22:10

Thanks IndigoBell, will do that.

AllSquaredUp Tue 18-Oct-11 15:57:33

Thanks for the detailed reply Agnes, as of now he does support in preschool from LEA (SIPS), 10 hours a week ( 1:1) which is good. This won't continue after he leaves school. We might get something called pupil Resource Allowance which some money for school towards dc. I am assuming we have no say in the kind of help school would seek.

We are in exactly same situation, salt and portage isn't working as effective one would expect, as you said he needs somethign tailored for his needs, he doesnt fit into most the prototypes they have atm, I do want to explore ABA, however not sure if it is suited for HFA. Did start ABA privately and then got the funding for it later?

We have no set directions given by anyone, everything split into different unit, ed psyc is to observe him in school setting, we will know what he thinks may be after 2 months, diagnosis isn't expected till mid next year, everything is so slow, sorry about ranting.. Thanks for the pointers

madwomanintheattic Tue 18-Oct-11 16:12:35

if he gets 10 hours 1-1 in order to cope/ access the curriculum in pre-school, you do need to be applying for a statement and using this as evidence that he needs support in ms.

i suspect if the general consensus is that he doesn't need a statement, then there is now ay he would be accepted for a specialist unit place in any case, so i would focus your attention on ms for now.

visit your local schools and discuss the situation with the ht's.

you have to apply now for the place you want. most of the schools are having open days etc at the mo -what is the closing date for yr r applications in your area?

Marne Tue 18-Oct-11 16:20:25

Hi, i have 2 dd's on the spectrum, dd1 has AS and at the moment has no statement, dd2 has HFA and severe language delay (hardly talks) and has a statement with full time TA/1:1. I applied for dd2's statement in the May before she started school, i had no back up from ed phyc (who told me not to bother applying) but i had no trouble getting a statement with back up from her nursery and SALT. My dd's are both in MS and doing well but i have feeling dd2 will end up in sn school in the next couple of years (just because her sensory isues are so severe).

I agree with the others, go and visit some schools and see what feels best for your ds, we chose sn school for dd2 but are application was turned down as she was academicly ahead for her age and they felt MS would improve her speach (being around more verbal children).

AgnesDiPesto Tue 18-Oct-11 16:46:03

Yes we started ABA privately and then showed it was leading to gains that m/s+visiting professionals were not achieving.
It was worth it for us as we have no suitable SN school, no ASD units and m/s would not be able to teach him adequately. The only option would have been a MLD school where he would have been the only child with speech and an IQ above 70.
So its quite a common scenario I think to have a child too able for one and too severe for another. But good quality support in m/s can work.
If you are even thinking of asking for ABA support in school you want to start applying for a statement now and expect it to take a year including appeal. The advantage of ABA before you go into school is that schools don't feel they are going against the LA in accepting ABA. Once we had ABA directed by tribunal all the schools were happy for ABA staff to come in. But if we had not got it on the statement all would probably have refused.
ABA is suited to HFA - it includes social skills, conversation (DS not at that level yet), classroom skills etc etc. ABA is just a way of teaching, but you can use it to teach any skill whether basic or complex.
The best advice I can give you is push outreach and SALT for very specific programmes and targets and regular reviews where they can show you if the approach they are trying has worked or not.
If you PM me with your email I will send you our statement and IEPs for ideas of what good provision looks like and what you should be asking the outreach / SALT to deliver; not that they will be capable of doing it though.

tryingtokeepintune Tue 18-Oct-11 19:54:02


My ds went into ms at first have transferred into a unit attached to a ms this Sept.

We decided on ms because we thought he would not fit into the unit when we went to look 5 years ago. However, since then, the policy was that they will only admit children who are capable of accessing ms into the units. He has been there since September and this is the first time I have seen him eager to go to school. He talks about the things they do and sometimes tells me the funny things that has happened during the day or some days ago.

We decided to move him because he was not making progress and the ms school was only babysitting him - they expected nothing of him. At least at the unit he gets SALT every week, Music Therapy (I could not find any available therapist despite looking for over a year), etc. It is also the first time he has been set homework appropriate to his abilities, rather than homework which I should be doing (make a volcano in Yr 2). Ds also joins in the ms for some activities.

I think the advice already given re: getting a statement is the first step you should take. Also visit the schools and see what they can offer.

Also, does your ds have any sensory issues? I can see now that the noise in the ms classes was very distressful to ds and he used to cover his ears when going in.

AllSquaredUp Tue 18-Oct-11 20:25:14

Thanks all for your input, yes would be starting on statement preparation straight away. Yes, I am putting in application form for MS state school and would be visiting local schools in coming weeks. We feel MS with right kind of help would suit him, however getting kind of help is tricky.

I plan to ask if they run any social skills club or have buddy programme for children with communication difficulties. Anything specific I should be asking/looking for? Anyone have handy check list? smile

Madwomanintheattic, yes admissions are open till mid January, am trying gather as information as possible.

Tryingtokeepintune, good point, DS has sensory issues, we think not too severe though, he hates vacuum cleaner or lawn mower noise.

Agnes, good to know ABA works, will get in touch with you for the details.

tryingtokeepintune Tue 18-Oct-11 21:11:01

You might want to look around at the special schools to see if any provide an 'inreach' programme for communications. When ds was in ms school, he used to go to a special school twice a week for half-hour for these sessions. His TA would go with him and then, in theory, use the strategies with him for the rest of the week too. This was the area he made the most progress.

Have you had any assessments done? SALT, OT? You will probably need the reports to get the LA to provide a reasonable statement.

As for questions to ask when visiting schools - ask how would they deal with a child who finds the place too noisy? HOw would they ensure that he plays with other children? Do they have any other children on the register with similar problems and how have they dealt with it?

Make a list of the things your ds would need help with and ask how they will/have dealt with such issues.

ArthurPewty Tue 18-Oct-11 21:31:25

Message withdrawn at poster's request.

ArthurPewty Tue 18-Oct-11 21:36:43

Message withdrawn at poster's request.

AllSquaredUp Tue 18-Oct-11 22:48:10

tryingtokeepintune, thats what i feel, the preschool TA is still doing thing as last term. Effectively someone who sits down with him to ensure he doesnt disrupt the class!! mix of SS and MS might work for my DS.

Still not sure what process is involved in this. I spoke to Local Admissions, was said entry into SS is always referred, you need a statement to be qualified for that. There, it goes round-and-round!!

He has SALT working him for 9 months now and has home portage since Sept. thanks for the questions, yep, making a list.

LeonieDelt, encouraging to hear about your DD1, bless her. one thing I have taken away from today's chat is apply for a statement, no matter what experts say.

bialystockandbloom Tue 18-Oct-11 23:05:54

Yep, agree with all the others. Apply for a statement. Ignore the official schtick. We were told by paediatrician, early years intervention officer, and even our aba consultant that ds (hfa) wouldn't get a statement - too 'engaged', too verbal, too 'high functioning'. Yes he is those things, but lo and behold he did get a statement. (Admittedly it is shit and we are appealing it, but hey.)

Equally important is to look carefully at schools now. Try and imagine how he would be in them, and imagine what support they will give him, and whether it is the kind of support you think he needs. Eg one school I visited made a big thing about showing me the 'sensory chill-out room' which children could use if they needed to escape. My ds at the time had big difficulties with social interaction; the last thing he needed was to be removed from social situations, he needed practice under expert guidance. So ask all the questions you need to. Arrange to talk to the senco of each school, and try to pin them down about what they could do to support ds.

Btw we turned down a place at one of the best private schools in south London as they couldn't offer ds the support he really needed. He started Reception at a nice local state school this year - jury's out still, but just wanted to tell you that, as private schools are not necessarily the best place if the support isn't there - be open minded about it.

Imo the key to ms school is ensuring he has the right support there - and frankly the only way you can do that is via a statement.

We also do ABA (Verbal Behaviour) with ds, which has been fantastic.

ArthurPewty Wed 19-Oct-11 19:45:52

Message withdrawn at poster's request.

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