Where do I go from here? (long)

[bumblingbovine]

I managed to post this on someone else's thread by mistake so here it is again

_

Ds is unlikely to get a "diagnosis" at the moment anyway and it has left me feeling very very isolated Ds has a number of behavioural and emotional difficulties. His behaviour at school in particular is very very difficult. He is currently on action plus and has had a 1:1 TA for 20 hours a week since the second term of reception (he is now in year 1). Given the difficulty most people on here seem to find in getting 1:1 allocated, this is probably an indication of how difficult ds is in school. The school have just put in a request for a statement (with our approval and consent) and we are now starting down that route.

He has seen the following professionals:
Private dev paediatrician who assessed him as about a year behind generally and also with some gross motor skills problems but we didn't pay for a specific ASD assessment because we had an nhs appointment come through so decided to go with that.

Behaviour support person - She has visited and once a term since he was in reception. I am not sure her suggestions (mostly sensible behavioural stuff) have had much effect

Two OTs (one nhs, one private) - both of who think he has SPD and also gross motor skills problems

An EP - who suggested Autism/Asbergers (the school thinks this is the case)

A SALT - who found no specific language difficulties (which I could have told her!), though she said that he should be tested when older to see whether his language skills had developed appropriately.

A community Paed - She did an assessment for ASD and ADHD and looked at all the reports from the above people. She had said that he did not score highly enough on either of the two tests she did to warrant a diagnosis of ASD or ADHD. However based on his behaviour problems in school she is going to ask CaMHS to do an in-school observation and for them to assess him, though given our experience of CAMHS aropund here this could take forever.

At home we do all of the following

• 15-25 mins extra help daily with reading and writing on top of what the school give (which isn't much tbh) Ds does this without too much complaint.
• OT exercises - 20 minutes daily as well as additional stuff as and when needed
• I do a social skills game or story with him a few times a week. at the moment we are focussing on personal space and appropriate ways to get attention.
• Use visual timetables at home to help with morning and evening routines
• Collaborative problem solving with DS on specific incidents at school. I have been having some success recently with getting to what is causing the outbursts. This is a big improvement on "I don't know" which is what I used to get in the past if ds was asked about why he had done something. Solving the problems is more difficult though!

Ds has stopped hurting us (hasn't done so for around 18 months) and is generally reasonably co-operative at home but I am not sure how much more "school" I can take. Ds seems reasonably happy to go to school but I dread drop off and pick up. So much so that I am beginning to spiral down into depression (something I am prone to).

What do we do now? I feel like DS is on this round of assessments and report writing, none of which is giving us a diagnosis or more importantly any real way of helping him.

what is it about drop off and pick up that is difficult?
You don't need a dx to access support - support is supposed to be needs based and you have lots of evidence for that which you can submit as part of his statement application based on the views of the professionals that he has seen.
Think about what you want to happen at school to make things easier for ds. You need clear ideas about what you want to be put into place to get the right support.

Hi cornsilks

Those are very good questions.

The problem with drop off and pick up is really about me and my isolation at school. Most (though not all) of the parents are obviously not happy with ds being in the same class as their child. We have had several parents approach us to coomplain about ds's behaviour . Also each time I get a report of what ds has done that day I am beginning to feel hopeless. I know this is a real sign that this whole issue is leading to me getting depressed. I suppose the answer to that is to see the GP about me. Part of me does feel though that a don't need a pill, I just need the school to be able to manage ds.

I really don't know what would work with ds in school. I know that at home we have had quite a bit of success with working out problems with ds and that being "too firm" tend to send ds into minor meltdown. I say minor because ds's meltdowns are really quite minor at home nowadays and are almost always because I have dropped the ball in the way I deal with him. When I am tired/feeling low I sometimes revert back to the shouting which so does not work with ds.

With DS you need to be firm but calm and also open to some (though not too much) negotiation on some things. It can be a difficult balancing act sometimes and we don't always manage it but most of the time it is fine at home.

At the last school review, the school basically told me that they had run out of ideas as to how to deal with ds. All his IEP targets at the beginning of last term were behavioural in nature and at the end of last term, their measurements of his behaviour showed that he had got much worse rather than better.

The school has provided skills groups and training which he is doing well at, though he hasn't seemed to have transferred the skills to the classroom.
They have not however managed to get a visual timetable going for ds despite, it being recommended by the EP at the beginning of the year and a SALT recently. Ds's teachers are also a job share which makes communication more difficult. Also the OT made a number of recommendations about providing breaks and specific exercises to do a set times or before certain activities. Although the school have tried some ofm these things, I think they have already decided that these things won't work with ds and have been very half hearted about implementing them.

I get the feeling that they think ds has some major problems but that really they have no clue how to handle him and would really rather he went away.

poor you and ds OP that sounds really tough
If the other parents are complaining about his behaviour then that is proof that his needs are not being met. The school can't just say that they don't know what to do about ds - it is their job to seek the appropriate support that your ds needs and if that means that they have to access support and advice from other agencies then that is what they have to do. Have you thought about applying for the statement yourself rather than leave it to the school?

As far as the job sharing goes, that shouldn't matter. DS2's teachers job share (1 works Mon-Wed noon, the other works Wed noon - Fri), and they just make the extra effort to communicate. Really shouldn't be that much of an obstacle.

Can you contact both the EP and the SALT, perhaps in writing, explaining your concerns that the visual timetables recommended by them quite some time ago has STILL not been implemented, as well as your concerns about the IEPs and such?

One thing I tried when parents complained was to thank them for bringing it to my attention, sympathise that their child was affected by my child's lack of support and state that i needed their help to flag the problem to the teachers and make sure school took it seriously.

Didn't have any problems after that, but my plan B response would have been to ask them to write to the governors and copy it to the headteacher and LA .

Thanks everyone

I have spoken to the SALT about the lack of visual timetable as she saw DS most recently and she said she would make the timetable for the school so that they could use it. I am just wating for her to do that at the moment.

I have to say that the school does have quite a tough job with ds though. He is like a different child there really. At home he is willing to look at me and talk to me and dh and to engage with us. As soon as we enter the school building, he has trouble looking at me or paying attention. His TA really struggles to get him to do as she asks. He has to be asked several times before he does anything he doesn't want to. He has daily outbursts when frustrated. He hurts people children and adults regualarly (at least 2-3 times a week).

He is also just SO impulsive. This morning at drop off time he went to his chair and sat down quite nicely. I was just talking to his TA about something quickly (15 secs or so as the class was just about to settle down for carpet time) and ds shoved the chair next to him forward so that it hit another child on the back. He often can't explain why he does these things although sometimes when we are at home I can get him to think about what he did and to talk about how it happened and sometimes why.

He can be impulsive at home and still very occasionally throws things he shouldn't (like balls in the house) but throwing a chair is not something he would ever do at home.

I suppose I just feel like a useless parent. Without a label (and I know many people don't believe in them anyway) ds is just a naughty boy to most people. Sometimes I start to wonder if thst is true and that dh and I are just really crap parents. DS has two parents who love him, who never exhibit violence of any type. We try and be consistent, provide routine and clear boundaries while still giving Ds choice . Though I have sometimes been known to shout, I have never even hear dh shout at ds ever. He has a model of patience and calmness in his dad (slightly less so me) and yet we have a child who is just so violent.

We don't even have any other children to point to and say, "hey they are Ok it can't just be our parenting". I spend so much time feeling guilty it is beginning to get in the way of helping ds. I don't feel like I can attend the loccal autism or adhd support groups as ds doesn't have these (so we are told). I just don't know anyone at all in rl who has a child with this level of behavioural difficulty.

Hi LeninGrad

Thanks for posting

Ds has playtherapy once a week in school and has done since reception. the play therapist is lovely about DS actually and says she thinks he is a lovely boy with a great imagination and very verbally able. It doesn't seemed to have helped his behaviour much though. Having said that he does tend to be quite happy so maybe that is an achievement given his difficuties at school.

CAMHS here (Oxfordshire) is absolutely useless. If it weren't for the lovely nhs paediatrician seeing him and assessing him in her own time we would still be waiting for camhs to do something. She felt sorry for us because we had fallen through a crack in the rules. The rules on assessment here have changed recenetly in that the hospital now only assesseas children up to the age of 5 years old. Ds was 6 in the week he got the nhs appointment so the hospital refused to do a ful MDA on him. CAMHS then said he was too young for them!. The nhs paed has done what she can but promised to put all the work and reports she had in frot of someone from camhs and insist that someone came to the school to observe him and that they take on the assessment.

We use social stories and friendship/emotions books quite a lot. Ds calls them his friendship stories and likes to ask for them at night before bed. I know he is just trying to put off turning the lights out but I usually take advantage and read him one or two. He does put his hands over his ears though sometimes if I want to read one to him at other times and he doesn't want to listen.

His behaviour is really related to the following difficulties

• Difficulty keeping his hands to himself. He has an almost unstoppable drive to touch things and people all the time. This is much more evident in school than at home though
• Difficulty with transitions, particularly if you are asking him to change from something he likes to something he likes less
• Difficulty understanding the reasons why someone might have done something
• Difficulty asking for help (probably because he is unaware he needs help ISWIM). Again this is much more evident at school. At home he asks for help quite easily.
• Difficulty persiting with things that are difficult or that he finds tedious. He needs a lot of adult input to do this.

The school did mention a CAF a while ago, I will ask the Senco about it. I am sort of assuming that they will do this as part of the statement of needs assessment though I could be being naive.

I am quite interested in ABA but I am not sure where to start. Also the school would need to implement it as well as his real difficulties are at school rather than at home. I know I keep saying that but it is nonetheless true.

You can ask your GP to refer you to the social communication clinic for complex cases / second opinions at great ormond street. The local camhs has to consent but this is normally a routine exercise. Anyway it would be difficult for them to refuse.

If they are not allowing a second opinion, the camhs 'patient advice and liason service' should be able to help you get it organised. Particularly if you have a local paediatrician who feels there is a problem...

I would agree ABA or someone capable of writing and demonstrating behaviour programmes for the staff to follow. These need to be really individualised to your child and applied consistently by everyone working with him
It does not sound as though you would need much ABA - eg perhaps just supervision and training of the TA / teacher and a small amount of 1:1 'coaching' eg of social rules etc per week
Do you think his behaviour problems are due to sensory overload / busy environment etc and a unit or smaller class (eg private school) would be worth considering - or do you think it is rigid behaviour / poor understanding of social rules etc - in which case ABA can help with this in mainstream. You can ask LA to fund either

My son has an ABA trained 1:1, but the provider we work with also train school TAs to deliver ABA.

You could post a thread about ABA in Oxford and see if anyone can recommend anyone. Also try Yahoo ABA UK group.

If you ask for ABA on the statement - you will need probably first to do some ABA and show it will work - you have a good chance of getting it if the cost is similar or less to what the LA would have to do eg if you argue your child is at risk of his placement breaking down and having to go to a specialist placement for ASD or BESD then ABA will suddenly start to look like a much cheaper option.

Ds is unlikely to get a "diagnosis" at the moment anyway (...)
we didn't pay for a specific ASD assessment because we had an nhs appointment come through
What happened with the NHS appointment? Has that happened? Why has he still not got a dx? Also maybe it'd be useful to look at special schools to see if they could meet his needs better.

Thanks for the replies

This is very difficult to answer but I think a good deal of it may be the first though there is definitely some of the latter too.

The problem with a private school is that I am not sure many of them would take a child with these difficulties or am I wrong?

There is a local school to us for children with BED who take only statemented children. It had an excellent ofsted and they particulalry commented that children who had been there sinmce year 1 or 2 did particularly well. I am planning to contact them to see if we can visit. This is our backup if things don't improve. We would probably try another ms school before that though. I am also seriously considering home schooling but it is a very big step as I would have to give up work.

Ideally though I'd like ds to manage in MS and one problem with him going to a special school is would not legally be able to remove him to home school him if we weren't happy with it so I see that as a last resort really.

AllieZ
We saw an nhs paediatricain who did an ADR questionnaire with me and a conners with us and the school and who looked at all the reports provided by the people called in by the school (OT, SALT, EP).

She said that she couldn't give him a diagnosis based on what she has as he did not score highly enough on these tests to get a diagnosis of ADHD or ASD but that a lot of children came into that category of having problems but with no real label.

DS is also doing averagely (at the low end) at school but she did also say that given the amount of work we do with him at home and her assessment of him face to face she felt it was entirely possible that he wasn't reaching his full potential academically.

As I said she has passed us on to CAMHS as she can't do any more for DS.

bumblingbovone I would seek a 2nd opinion (and possibly trying private, too, if that doesn't work). With all that you describe he should really get a dx, which then would make getting him the help he needs much easier.