Primary Behaviour Service let down

[Corrimony]

DS - 5 yrs, HFA/Aspergers – is in Y1 and goes to mainstream mornings only as he finds school so overwhelming (has SNA in the morning, no funds for more hours which he cannot manage without; statement process is under way). The school arranged for him to attend the county Primary Education Service unit for a term where they would supposedly help him learn some social skills in a small group as a stepping stone to more hours in school. Three afternoons a week. Complete disaster! I was told they would help him and I feel so let down. Today I was told he had been shouting, screaming and crying most of the session and throwing chairs (he’s never been so aggressive before and in school he’s doing well with his assistant).

They have a policy of not phoning parents so they kept him shut in the ‘quiet room’ (a tiny cupboard-like room) screaming and crying until the end of the afternoon session. He thinks he was ‘locked up’ and he’s very disturbed by the whole thing. Obviously they have to protect the other children but how can things of got this bad? – no one else has ever had such trouble managing him and he has never been so aggressive before. Everyone else who has ever worked with him has found a way to help him relax and calm down before things got this bad – but not them!

When I was collecting him they told me he had been very ‘bad’ and a ‘nightmare’ in front of him, and that it had been very distressing for them. Since he started last week he has regressed so much in terms of behaviour, communication, cooperation, stress levels. He was in a good place when he started and now he's having lots of meltdowns and he's anxious and unhappy again. I was wondering if anyone had experience with similar units?

[Mollyweasley]

I am so sorry poor DS and poor you. I have no experience of these unit but I completely understand your concern and would not be happy at all with this situation. Sorry no solution but a holding hand.

[iloveithere]

my ds goes to one of these too. it isn't good, I have a long list of niggles, some minor, some bigger, but not as bad as your experience sounds.

Could it be the change that is upsetting him, rather than the place itself?

However, I do get the feeling that these places have a strictly 'behaviourist' approach, i.e rewards and sanctions, which is really no use whatsoever for a child with SEN, only really for those who mis-behave due to chaotic lifestyles/lack of boundaries etc.

They seem to think the child will 'learn' how to behave, when they are not 'being naughty' but are just responding to situations in the only way they can. I'm sure you know that you cant 'teach' a child with HFA not to have it anymore!

I don't think many councils have these facilities, if you don't mind me asking, where do you live?

[Corrimony]

Thank you Mollyweasley, so nice to hear. I think the change upset him and the hours should have increased gradually, but I think it's the place too. iloveithere, I think you are completely right about the route of the problem - it is all about rewards and sanctions and isn't actually helping with any of the sensory or social issues that make it difficult for him to behave like others. I haven't been debriefed properly yet but from what I gather the sanctions are just heaping on the pressure and causing stress overload and the rewards are not motivating (little pods with a surprise in - like Kinder Surprise - he doesn't like surprises and has very particular interests). I have such a long list of niggles too! DS's self esteem has really taken a blow. iloveithere, I can pm you with council.

[iloveithere]

Have pm'd you.

[OneInEight]

To be honest I think a split placement like this would be a nightmare for most children with an ASD. The rules will be inconsistent between the two locations and he will probably not know whether he was coming or going. A split placement was briefly considered for ds1 for secondary but the general feeling from the HT and EP was that ds1 would feel he did not belong to either and make his social difficulties worse.

ds1 was in an EBD school and it did work well for him so I don't think it is necessarily that EBD schools are unsuitable for children on the ASD spectrum. The difference was he had a fulltime placement there. It still took him a while to settle(couple of months I think) and we saw a big improvement when he was told his placement was permanent. They did have to use the quiet room on occasion especially at the beginning but ds1 has said afterwards that he preferred it to being restrained as he was in mainstream when he had a meltdown. We also felt the no callout policy was good in our circumstances as we felt some of the behaviour was because he had learnt that challenging behaviour was the quickest way to get out of a stressful situation and we needed him not to be rewarded for this.

[OneInEight]

Actually having read your OP again the thing that would concern me most is the language they are using.

ds1 used to come out with a report card every day and if there had been an issue like you are describing it would be listed as had "lots of problem" in whatever lesson. A staff member would also describe what had gone wrong but not using negative words like "bad" and "nightmare". Usually, there would be something positive on his sheet as well. They would then send him on his way with a "Let's have a better day tomorrow" and it was made quite clear that tomorrow would be a fresh start.

It made it clear to ds1 that the behaviour was not acceptable but without making him like the worst child in the world. It was also a lot less stressful for me (compared to the litany of character assassination we got at mainstream) which actually really helped too.

[Corrimony]

OneInEight, I see what you mean about the split placement - maybe that's a big part of what went wrong. And I see a no calling policy would be the right thing in some circumstances - it's just that they admitted they didn't know what to do with him and that he wasn't getting anything out of being there. If it seemed they knew what they were doing and it was the best thing it would be ok. The report card sounds good. At his mainstream school they use a diary to relate problems, always with something positive and they never use negative language like 'bad' or 'naughty'. There's thirty kids at school and only four in the unit but he's never lost it to this extent at school or had to be restrained.

iloveithere, your pm didn't come through. Did you get mine?

[tethersend]

Hang on- did they shut him in the 'quiet room' on his own against his will? If so, this is illegal.

I would be concerned about him being sent to ESBD provision when he has ASD. It's clearly not meeting his needs.

Whose decision was it for him to attend school part time?

Has anyone offered home tuition for your DS in the afternoon?

Sorry to ask so many questions, but there is a lot about your DS's situation which is concerning.

[iloveithere]

I got your, thought I had replied, it was in the middle of the night, so I might have pressed the wrong button. Phone running out of battery, so ill reply again tomorrow

[Corrimony]

tethersend, thanks for your questions – it feels so good to tell someone about it all.

There was someone with him in the quiet room - sorry, should have made that clear. DS felt he had been ‘trapped’ in there for 'an hour' (sense of time can’t be relied on, obviously!). From what they said when I collected him it sounded like they had kept him in there for a long time - until home-time - because they didn't know what else to do with him because he wouldn’t stop screaming and crying. It is hard to believe they even tried to help him calm down because he has always been receptive to help and comfort after he has had a meltdown. Is this acceptable practice as long as someone is with him? Should they not have effective strategies for helping children like him calm down?

All the children started YR part time and he just never moved onto full because he wasn’t managing the hours he did. He has been given one to one in the mornings (even before the statement has been processed) and it's obvious he can only function with this help. School says they can't fund anymore and that even with the statement he will not get any more hours. He is academically able and not behind in that sense (although his knowledge mostly comes from his own curiosity at home and not because of what he has learnt at school). He can't focus on anything at school without the constant guidance of the assistant and as he gets very anxious and overwhelmed she takes him out for regular walks around the school to keep calm enough to be there. He needs heaps of help with planning what is going to happen, interpreting things etc. Wouldn't last five minutes without her.

No one has offered tuition - does this happen? I am worried we would have to put him in full time and watch him fail in order to prove he couldn't manage before we could get more help- a big risk as his trust and confidence in school has been built up ever so carefully and gradually. I really don't know where to go from here.

[tethersend]

If someone was with him in the room, then it is not illegal. However, it's clearly not good practice either, unless it is a proven technique to calm a particular child down (i.e., it's a strategy specified in their behaviour plan/IEP). In this case, it sounds like it did not help your DS to calm down, therefore it was not a good strategy and it sounds like they do not have the skills to deal with his behaviour.

If the school are saying that they can't have him in school full time, then this is an illegal exclusion.

If they are saying that he needs 1:1 support all the time, then they need to apply for a statement (EHCP) for him, and make an application to the LEA for interim funding whilst he is being assessed.

Contact the LEA and explain that as your DS is being illegally excluded from school, you want to know what provision will be put in place for him whilst he is not at school.

What year is he in?

[Corrimony]

He's in Y1. The statement process was started in YR and is underway but is taking a long long time. LEA have agreed to assess so we are now waiting for the assessment. However, the school have said that children with even more severe problems are only getting the basic 12 (or was it 15?) hours of one to one so DS will almost certainly not get any more hours than he already has. I don't know if they are right on this (I hope not). It's very interesting that you say they could apply for interim funding - I hadn't heard of that so I will raise it. Sounds hopeful, thanks.

[tethersend]

He is entitled to full time education regardless of how many hours' support are on his statement.

In Y1, this should be at least 21 hours per week.

It sounds like he is part time because the school can't cope, not him.

Definitely raise this with the LEA.

[PinkShark]

DS was handled the same in Y2 but in a ARP unit. It brought such sad memories, I used to pick DS all sweaty, red and breathless from crying in the 'quiet' room which ultimately used to be their sensory room.

I think your DS may be similar to mine so a bit more nurturing approach, ie. build relationship first may produce better results rather than rewards he doesnt like. Perhaps tell the teacher what works best for your DS in terms of reward, for DS if not eadible used to be out on scooters/bikes and doing the work on the 'fly'.

[Corrimony]

Sorry to hear about the sad memories PinkShark. Hope things are much better now. MY DS is like yours - he does respond to a nurturing approach. I read in one book on parenting an ASD child: "rules without friendship equals rebellion". That is definitely the case for my DS!

[AgnesDiPesto]

Don't worry about what other children have got in past. Just concentrate on what is right for yours. That's what the law requires. You may have to go to tribunal to get it and won't make many friends on the way but it will be worth it.
My ds has ABA programme in and out of school. He does 1:1 at home and then has 1:1 supoort in school (35 hours week in total). We have built up time in school slowly he is now year 3 and goes 7 half days, in yr 1 it was 4 half days. It's worked well for us doing it that way as we have only increased time in school when his skill level and tolerance justified it.
We had to go to tribunal and do private ABA to gather evidence to get it funded and are the only family in the LA who has this. Just because no one else has got it doesn't mean you won't be successful.
This unit would not be right for my son. His 1:1 ABA is very nurturing and fun. He never needs to be restrained or put in time out. He's had his moments over the years but always been handled through positive behaviour approaches and consequences he can cope with eg losing chance of his choice activity. But he gets many chances throughout the course of a session. We have never finished a session on a negative, always get him back on track. We have a reward based system and mostly he is motivated by that as the staff use things he really likes. If it doesn't work they change the rewards and the system!
Personally I would not send him back. I would use it as evidence he is capable of challenging behaviour when inappropriate provision is made and that is why he needs autism specific individualised approach and then fight that to tribunal if necessary.
Having private ABA / autism specialist involved is what has made difference for us. Everything else - his successes at home, life skills, school all flow from the fact his ABA supervisor knows him and knows about autism.
Also he is not going to necessarily learn social skills just because he is in a place with other children. He would probably fare better with an ABA therapist or similar taking him to a playgroup or Cubs.
He can learn social skills in a small group in his current school too. His 1:1 just needs to take him and 2-3 others into the hall and play some social games.
As you say this is more to do with funding that what's right for your child.
maybe get in touch with IPSEA and see if can get caseworker to help you with assessment?