HF ASD in Mainstream

[Simone007]

Hi everyone,

I've been told by a good friend of mine who posts here that this is place to come for all things SEN related so wondered if you'd be able to offer me some advice...

I will try to keep this brief but it's hard to know where to start.

My little boy, aged 7 was diagnosed last year with ASD. He is HF (Asperger's) and generally achieving above average academically at school.

He's just been referred for an assessment for Dyspraxia also.

Since dx, school have put some support into place for him which includes a home/school link book and 1 hour of support each week (initially 1-2-1 and now in small groups) to look at social stories.

He is on School Action Plus but does not have an IEP (despite us requesting one). At our last meeting with the senco and sendis where the IEP was brought up again but we were told he didn't need one... the lady from Sendis noted some clear targets on the minutes but these have not been transferred to an IEP and I have no idea of who is responsible and how they will be measured.

Socially and emotionally he's years behind his peers and is becoming more and more isolated. His self-esteem is on the floor. He plays by his self or will (due to pressure from school) will find random children to attempt to 'play' with but as he usually will pick year 5/6 girls and combined with his short attention span/needing to be in control of games/rules this is always short-lived.

I decided to apply for SA without school's say-so and yesterday was 'summoned' to our HT. The meeting was awful. I was accused of 'bad mouthing' the school (quote " a friend of a friend of an ex TA who once worked at school told another teacher that you've been saying you're not happy with our support for your son"....

The truth is I am not! They refuse to see the extent of his anxieties and how far behind he is emotionally & socially. He will 'cope' throughout the school day.. perhaps the meltdowns only occur at school once a week but most evenings at home, and feeling 'safe', he will be anxious and stressed about school.

The HT clearly had NO CLUE about my son. Telling me that she was pleased with his 'social progress'.. how she could possibly come to this conclusion, I have no idea. Although not specifically telling me she disagreed with our application for SA she did tell me she didn't think he needed any more help than he's currently getting (1 hour of social stories a week). She also told me, not in these words precisely but more or less, that it was a mistake telling him about his diagnosis as they feel it's made him 'worse' and he uses having ASD (apparently writing it on his work) Erm, may he feels like he doesn't fit in?

I have been awake since 03.30 going over and over yesterday's meeting. It was awful. I will not 'win' against our HT who is well known within the LA and I fear my only option is to move my little boy to a different school - which scares the life out of me. I felt some of the 'curve balls' she threw yesterday about the gossip and the implication that his problems were 'at home' because they don't see them at school has severed communication. How do I send him there knowing he is not understood?

I am sure I have missed loads out I hope that this makes sense to somebody and any advice would be greatly appreciated.

Thanks

[Simone007]

Thank you for bumping Leonie :)

[ouryve]

I can't give specific advice, but good for you for applying for SA. Given their apparent wilful ignorance and bullying tactics, I would also explore other schools for your DS, if that's an option in your area. He sounds like he would be fine in mainstream, with the right support and a sympathetic school that's willing to pull its finger out can make so much difference.

[LimboLil]

Hi, do you know where the gossip came from? I am in a different situation to you but equally gut wrenching, see my post re academies, there might be info on there that helps you a bit. I am extremely careful at the moment not to discuss the issues I have going on with my son with any parents at the school, it's very cliquey and many of the staff live locally. Unfortunately, a friend of mine having similar-ish issues quoted me quite out of context on some things to further her own case and although nothing has been said to me about it I can't imagine that it's helped me at all. I am still on friendly terms with the mum involved as our kids are friends but I have literally ceased discussing anything whatsoever about school with her and stick to general chit chat. I'm sure she must have realised this and it's a shame because her own situation isn't a million miles from mine, but she should have thought about it before she started drawing my name into her issues. So not much advice on your overall situation but I think, unfortunately, you have to be ultra careful about what you say to people as it might get turned back on you in the wrong way. Hope you are able to get on top of things. Have you tried speaking to IPSEA, they give good, confidential and free advice over the phone.

[Catsdontcare]

I would explore the option of moving schools in all seriousness. I think even with a statement your DS is unlikely to get the support he needs at his current school.

[Simone007]

Thanks Ouryve x I hope that we get approval for assessment so he will be seen by Occ Therapy, Ed Psych and so on within school and perhaps then school might pull their finger out. I have a horrible suspicion that it won't make any difference. I had hoped that the diagnosis might but it hasn't really. I just want my boy to feel happy at school and get the right support. I am doubtful that this will happen here, our HT is not one to back down...

So long as children at this school are doing well academically they appear to have no interest in emotional well-being and development. I feel they're giving my son the bare minimum just so they can say 'we are doing something' and imagining the improvements. Yesterday he stood still all of lunchtime (alone). In the afternoon he spilt water on his self and was upset about this/having to change etc. School told us but played it down as usual. Once home he was withdrawn and anxious and then had a full on meltdown over what I had cooked for tea (refusing to eat again).

I feel like I am letting him down and there is no worst feeling than this.

:(

[Handywoman]

Hi Simone007 what an awful situation. Unfortunately it sounds very much like the school my two go to. The HT is not the best at listening (polite version) and her raison d'etre seems to be to keep a lid on everything so that nothing goes above the parapet. I had an issue with our SENCO telling me my anxiety was at the route of my daughter's maths problems, when in reality we have an Ed Psych report showing clearly how her cognitive profile specifically affects her learning in maths (SpLD). I was livid. I went over slimey HT and wrote straight to the governors. This seemed to galvanise a bit of action even if the govs were only impartial on paper.

TBH I think you have done marvellously by applying for SA for your boy. The HT is now clearly ruffled (good for you) and is now having to make up stories about what they've been doing to help, and perhaps magically come up with an IEP account for what they have or haven't done til now. She's trying to scare you off by telling you he's made brilliant progress socially, when in reality she neither knows nor gives two hoots, or there would be: a) and IEP in place and b) no resistance to parental application for SA.

I would tell you to move schools too but in reality that is difficult and you might find yourself out of the frying pan into the fire (certainly that's my feeling about my own local schools, I hear awful stories from them all!!!) so that's not necessarily the right thing either.

My advice to you (is not much really) is to have as good a paper trail as possible about their resistance to IEPs or any empty promises they have been making, and stick to your guns. Be prepared for an appeal against refusal to assess. Keep going. Call IPSEA for advice. Your HT is the one who should be waking up at 3am! (I know in reality it's unbelievably stressful and takes balls of steel). The system is at fault, ultimately, I cannot think why schools are so against doing everything they can for kids with SEN. But that seems to be the way it is and therefore everything is a fight to the death for parents. You are doing the right thing. I wish you lots of luck, stay on here for hand holding and brilliant advice (there is lots on here).

[Simone007]

LimboLil, yes I have my suspicions. I spoke (briefly) to parent at school who's son is statemented (just to get advice about the process etc). She asked what my reasons were and I said 'because I don't feel school are offering him enough support'. Very foolish. I will not make this mistake again. It's a shame really when all any of us want is the best for our children.

[Simone007]

Handywoman, thank you so much.

I feel totally beaten today and combined with the lack of sleep am a wreck (sitting in the office pretending to be working!!)

I promise I will digest your advice as soon as I can and make a plan. Yesterday I wondered if I should withdraw my application for SA but the only thing I am sure of today is that I will keep going with this.

If my application to have him assessed do I need to wait 6 months to reapply?

Thank you again for listening xx

[LimboLil]

Have a relaxing evening and a good night's sleep. I felt depressed and drained beyond belief yesterday but all the advice on here and a night's sleep and I feel quite Tiggerish again today. lol. The friend you spoke to may even have thought she was being helpful, I don't think mine meant to cause me any harm, she was just thinking on her feet about her own situation but I've come to the conclusion that I have to keep it zipped from now on! Which is a shame, just increases the feelings of isolation.

[Simone007]

Thank you all very much. I really do appreciate all of the advice and reassurance. Knowing others have been/are going through the same things is comforting.

I will definitely stick around. Thank you for making me feel welcome :)

[flowwithit]

Its good you have applied for a SA. I think you should think about another school too. My son is 12 and dx HFA academically ok but has anxiety and sensory difficulties. He is at a school that doesn't support very well and it's a nightmare keeping on top of things and trying to manage it all. We have just got SA but i dont think his school will get much better. At his age now he refuses to move as he hates anything to change so as your son is young enough to listen to you and has time to settle at a new school it might be the least stressful thing in the long run. Keep going with SA though whatever you decide.

[AgnesDiPesto]

There is no law about talking to your friends about school. Every parent does this. Do they think other parents in the playground don't moan and talk to each other?
Do they think teachers don't go home and chat to their partners or chat in the staff room about children?
So what, you are entitled to your opinion
The best way to prove you wrong is to send home a happy child
I've asked for a meeting with HT and even just that has prompted massive defensiveness from teacher and she doesn't even know what I'm going to say yet! So yes sadly this is typical.
Keep going with the SA. If its refused you appeal this decision. Its only if you lose your appeal you have to wait to apply again.
Sometimes staying in a rubbish school makes it easier to get a statement as its easier to get evidence of failure; but then think of moving if / when you get the statement
If you fail at any hurdle then again move him then.
If they give you a hard time print off some info about mental health issues and children with HFA and tell them that why he needs to have good self esteem and be able to make social connections not be on his own all the time.

[SallyBear]

The HT sounds horrendous and obviously hasn't a clue about inclusion. I hardly think that an hour of social stories really cuts the mustard. I think that all the advice so far has been excellent!

Welcome to the board and please keep posting!

[Inappropriatelyemployed]

God, she sounds just like DS's old head. Full of her own importance and only concerned with her school's reputation. She didn't have a clue about SEN.

You chart your own course but be warned it is very difficult to get things down if the school are against you. it means that even if you get a statement, they are probably going to do whatever they like.

Start looking for other schools just in case.

[Ilisten2theradio]

the Department of Education's SENCOP which is guidance that schools must follow states:

School Action and School Action Plus

School Action:

Intervention at the level of School Action involves staff in the child?s school, e.g. class teachers and/or the Special Educational Needs Coordinator (SENCO), providing additional support to help the child?s progress. This may also involve ?one-off or occasional advice? from LEA support services but would not require regular or ongoing input from external agencies. The Code recommends that strategies which are adopted to enable the child to progress should be recorded in the form of an Individual Education Plan (IEP), a working document which outlines support that is additional to, or different from the differentiated curriculum plan which is part of provision for all children. In comparison with statements of SEN, the Code makes a recommendation that IEPs are reviewed at least twice a year and ideally, on a termly basis.

School Action Plus:

At the level of School Action Plus, a request for support will usually have been made to external services following a review of the child?s IEP. At this level external support services, whether provided by the LEA or other outside agencies, will provide more specialist input and may include regular visits by professionals from a specialist service (e.g. a qualified teacher of the visually impaired from the visual impairment support service). The external specialist may act in an advisory capacity, provide additional specialist assessment or be involved in working with the child directly. A new IEP is then drawn up which sets out fresh strategies for supporting the child?s progress

The school should be preparing IEP's which should be reviewed termly with your input!!!
If you google SEN toolkit you can find out how they should be written etc.


My DS is HF Aspergers. he is now 12. We got a statement only in yer 6. He was getting lots of help from the school though although it felt like a fight for every crumb of help I got in the beginning.
You need to read up on the sorts of help that you think the school could be doing and go the SENCO and ask for it with evidence as to why it is needed.
Also you can self refer to the OT for things like hypermobility, sensory issues, fine motor control issues which are common in ASD children.

You can also request that they get an EP in to observe him, although they may resist and there is usually a long list to get this to happen.

You can also request autism outreach come in to observe and make recommendations.

Hope this may give you some ideas.

[Simone007]

Wow! Thank you all so very much for taking the time to reply to me and offering me such fantastic advice and support.

I have meetings arranged with class teacher (Senco), Sendis and with HT mid-April. I will make sure that I go to these meetings fully prepared.

IListen2totheradio, thank you so much. It's pretty clear that school are not following SENCOP - no IEP's despite being on Action Plus for starters.

We have a referral to OT for Dyspraxia via our family GP. (although I'm told the appointment won't be before the summer) Despite struggling with PE, not being able to ride a bike, balance, hyper senses, very poor organisation and so on, the school have done absolutely nothing to support him in this area. Well, despite removing him from PE on the occasions where it gets to much for him and he has a meltdown. Last week he couldn't hop during a PE lesson and was removed and asked to go and read in a different classroom. He was convinced he was being removed as he had done something wrong - you can see why he has very poor self esteem.

Still, school refuse to see the bigger picture and consider him to be making adequate progress!

I feel a bit better this evening which is wholly down to your fantastic support & advice. Thank you so much :) x

[Ilisten2theradio]

I had so much help over the years from the lovely mumsnetters on SNs who have pointed me endlessly in the right direction re the law, and the kinds of help available.

before DS saw the Ed Psych I did manage to get the outreach in to see him in school and this was helpful for making some adjustments in class.

We also got help in break and lunchtimes - It can be done but needs a lot of pressure as the Teachers and TA's normally have their breaks at this time too.
Ds was lashing out in the playground when he didn't understand all the social rules and the constantly changing rules of playground games, so that did help our cause a lot, and if he is refusing things you can get help on the grounds of health and safety or safeguarding.

little things made big differences like coming in from break 5 mins early to "debrief" with a TA, a move'n'sit cushion, fiddle toys, a visual timetable, being warned in advance if possible about changes, being at the front or back of the line with a teacher/ta when going out of class/lining up.

additonal help in PE etc

it really is a mindset they need to get into when you work out what will help