Behaviour management for 'adhd symptoms'

[KarenT]

Hello all

 

I don't post much here these days so apologies for coming out of the woodwork to ask for advice, but needs must.

 

Some of you might remember back on October we met with J?s psychiatrist about an ADHD assessment. He has Asperger?s (dx in 2006) and professionals have always claimed his hyperactivity, distractibility, impulsivity and lack of focus were associated with the AS, though we?ve always felt it went beyond that, hence the request for referral for ADHD assessment.

 

Meeting with this psychiatrist (different one to those he usually sees at CAMHS) coincided with J being removed from school to home educate, following a series of incidents in school including a one-day exclusion for violent behaviour, largely caused by staff mismanaging him in a playground situation and restraining him after ?forgetting? he was autistic. Naturally he went ballistic with pretty awful consequences (I'm not condoning his response but it could easily have been prevented). At that time, the Head urged me to meet with J?s psychiatrist and consider medication (with the implication that we were thus far being noble in trying to do it all by ourselves by behaviour management, which wasn?t the case as we?d been asking for medical support for some time but always being refused). Following the exclusion, I met with the Head to discuss all the behaviour management techniques we were using at home (and had had considerable success with for two years leading to that point), however none were implemented in school and J continued to deteriorate rapidly. Much of the work we?d done with him was undone in that time, and the Head later admitted to me that she?d had no support in place for him at all. He regressed about 18 months in five weeks and now, nearly four months later, is still struggling to recover.

 

Around that time we also applied for statutory assessment, which was rejected as apparently (in the panel?s opinion) J?s needs were being well met at his school, this based on ?evidence? gathered from education staff who had either admitted to not providing for him, or were too overworked to remember his specific needs, or in the case of the Ed Psych had never met him nor even attended meetings about him. Eventually we decided not to pursue an appeal as we honestly believe his needs CAN be met at SA+ if staff are prepared to support him - he doesn't need additional resources as outlined in a statement, just access to the existing ones. I don?t believe a statement would make much difference to general lax attitudes towards providing for children with special needs, and I felt that SENDIST would find the same.

 

These were the same people the psychiatrist contacted about the ADHD assessment. We did our Conners and school did theirs, and we met with the psych afterwards to discuss the results. Although she said she could see why we felt J did have ADHD the school?s view was different so her conclusion was that he didn?t have it. I reminded her that she?d asked if there was anyone else she could approach for information about J but she hadn?t done so (local and national charities who have been working with him for several years and know him very well) but she insisted she did things ?by the book? and as such J didn?t have ADHD so she wouldn?t be recommending drugs for him ? with the new NICE guidelines she couldn?t prescribe without a formal dx. This was the extent of the ?full assessment?. We were in her office about five minutes and she ushered us out quickly so she could write up her report ? three months later we?ve yet to receive a copy. It was made very clear that we?d used up appointment time that could have been used by another family, and reminded that J had been observed by about 13 different professionals over the years and none had suggested ADHD in their reports. It was clear that she felt we?d wasted her time.

 

So that was that, and once again we?re on our own trying to manage J without CAMHS support.

 

Now, I know we?re in the early stages of Home Ed and it will certainly take some time for J to adjust and stabilize emotionally, but we are still struggling to support him with what we regard to be ADHD issues. There are days when he literally cannot function without an adult alongside him, guiding and prompting him with the simplest of tasks. He is distracted by empty air (most of what sidetracks him is in his head, rather than external), and his impulsivity continues to worry us. His anger problems, which he?d worked so hard to address, have returned in full force, though he's beginning to recogise the signs again and is working on that.

 

We know that J won?t get a sniff of medication without a dx so we?re stuck with behaviour management. I?m well aware that ?you can?t teach until you can reach? but the fact remains, he can?t have drugs. The question is, how do we tackle this now? We?ve been trying to support him for years with guidance, reminders, reward and consequence systems, checklists and timetables ? the full works. But it?s just not sinking in and I don?t know what to do next.

 

What behaviour management strategies do others use to support their children? J'smum, I need you now!

 

Thanks, and truly sorry it?s so long!

Karen

x

 

[KarenT]

Oh, and VERY sorry for all the question marks in place of apostrophes, which always happens when I type up in Word then copy 'n' paste. Why does that happen on this forum?!

 

K

x

[bikemad]

I dont have advice as im battling with camhs atm over what my ds has but couldnt read n run..... <'>

[JsMum]

Well Im here, I use a multi range of therapies but the most useful one is the SENSORY INTREGRATION and so J uses Weighted Blankets, He has a sensory Room all kitted out for his needs, using all sensory needs, he has a range of theraputic tools, so musical instruments, tactile toys, construction toys, mirrors, lights, anger management.

 

We also have arts and crafts to support his emotional needs, to help him Express in a positive way and we both enjoy Relaxation and Meditation so his Sensory Room incorperates these too. (CDs bought from Amazon UK)

 

He has a very ridgid, structured routines and we are using programmes used by a childrens developmental centre J attends annually, at the moment it is sequencing and we incoperate calendars to give him awarness and help him adapt to changes.

 

We use a communication Aid called Widgits and then there is dietary needs on top.

 

We still have our moments but there is less restriant, less aggression and not as much distructive reactions going on, also J is now in a residential special school that does meet his needs, so I get a big thing called Respite and the school have incorperated a very intensive Care/education Programme.

 

When J is at school I am busy making and implimenting programmes and preparing for his return for Holidays and Weekends and I am a lot more energy, when it was 24-7 last year I was drained and exhausted, so respite has to be another field to look into.

 

Our real difficulty at the moment is going away from home/school, so going out into town, ect but we have a programme for that too and he does cope with small shopping trips, and we recognise when he really can not do it and wait for a period where he is calmer and not as anxious.

 

I think what has to be very important is that if things are not working at school or they dont recognise thier needs then the work you do can go unrecognised and the child is always in a state of High Anxiety causing a cycle for Aggression, anger, behavioural difficulties ect because they are always in a stressed state and often with children with ASDs ADHDs that is often with the primary carer because they feel safe and can let it all go with them because they know the predictability.

 

Have you ever videod him, J was diagnosed first with ADHD at seven its since then he has had additional needs recognised.

 

One thing I do know is that I could not of done Home Education full time and look after J 24-7 with his needs, as well as been a single mum with no family support and found it massively difficult to cope with Js complex special needs which is why he required a 24hr curriculum.

 

If I could of Home Educated I would of done it from day one and never even bothered with school at all.

 

You have a real challenge on your hands when you have a child with complex special needs.

 

JsMum

 

 

[Moll]

I wish i could help , but I am currently trying to work this out myself, I'm off on a course this week about behaviour management the low arousal way. I hope that this will will give me some ideas and I will be able to feed them back. I have a lot of hope pinned on this as I am so tired of it all.

[KarenT]

Thanks for replies, especially you, Jsmum!

 

I'm short on time today (meetings and visits) but will reply properly later.

 

Thanks again

x

[KarenT]

Hi J'smum, and thanks for your detailed reply.

I use a multi range of therapies but the most useful one is the SENSORY INTREGRATION and so J uses Weighted Blankets, He has a sensory Room all kitted out for his needs, using all sensory needs, he has a range of theraputic tools, so musical instruments, tactile toys, construction toys, mirrors, lights, anger management.

 

Yes, we use much of that. I'm trying again with a weighted lap-pad - last time J tried one he freaked out and couldn't accept it, but he's more tolerant now. I've also used a lot of social stories to help him understand his sensory needs, which have helped.

 

We also have arts and crafts to support his emotional needs, to help him Express in a positive way and we both enjoy Relaxation and Meditation so his Sensory Room incorperates these too. (CDs bought from Amazon UK)

 

J's not arty-crafty at all, but I can see why it would help. We do relaxation as well but he's not keen - have been doing it for over two years now, several times a week, and he's only now beginning to lie reasonably still.

 

He has a very ridgid, structured routines and we are using programmes used by a childrens developmental centre J attends annually, at the moment it is sequencing and we incoperate calendars to give him awarness and help him adapt to changes.

 

Yes, definitely. I have a huge range of timetables, checklists etc depending on the circumstances. They don't always help though - he is very flighty and forgets to look at lists. I often have to lead him to them and remind them they are there. Was the developmental centre a referral from CAMHS or elsewhere? Do you have to pay for it? We have no official support for J, though he does go to a specialised fun club for autism. It's only once a month though.

 

We use a communication Aid called Widgits and then there is dietary needs on top.

 

I don't use a formal communication tool but have a lot of visuals anyway and they do help, depending on how stressed J is. Is your J gf/cf? We tried gf for a year but it didn't make any difference at all, but at least it's a box ticked.

 

When J is at school I am busy making and implimenting programmes and preparing for his return for Holidays and Weekends and I am a lot more energy, when it was 24-7 last year I was drained and exhausted, so respite has to be another field to look into.

 

Me too, although it's more difficult now that he's home educated. We are spending a lot of time dipping into HE opportunites (classes, social meets etc) to see what fits so there's not much time at present for anything else. I expect that will settle when our programme stabilises but for now there is little chance of a break.

 

Our real difficulty at the moment is going away from home/school, so going out into town, ect but we have a programme for that too and he does cope with small shopping trips, and we recognise when he really can not do it and wait for a period where he is calmer and not as anxious.

 

Now my J has always managed OK with shops and other outings - his issues are more social than sensory and he struggles when there are a lot of children together in an unstructured setting. School playtimes were always very difficult, although towards the end of his time at school he was managing very well with rough play, teasing, all the things our kids shouldnt' be able to cope with. We'd worked very hard on the dynamics of friendships, how they change day by day, and he'd come to terms with it well. However, incidents at school scuppered all that and we're back to square one. What alarms me most is how fragile that progress was and how easily it could be undone when there was no support available.

 

I think what has to be very important is that if things are not working at school or they dont recognise thier needs then the work you do can go unrecognised and the child is always in a state of High Anxiety causing a cycle for Aggression, anger, behavioural difficulties ect because they are always in a stressed state and often with children with ASDs ADHDs that is often with the primary carer because they feel safe and can let it all go with them because they know the predictability.

 

You're absolutely right. I feel we've been spitting in the wind for years, working hard with J at home and making progress, only to have it undone because similar support wasn't there in school. J's downfall has been his high intelligence, as schools have always assumed he must 'know better' and was therefore misbehaving on purpose. He's been through some awful times, sheer negligence and even abuse one one occasion - it's hardly surprising he's responded in the way he has.

 

Have you ever videod him, J was diagnosed first with ADHD at seven its since then he has had additional needs recognised.

 

No. I once suggested this to the CAMHS nurse (the one who said he knew what he was doing and suggested the naughty step (sigh)) but she told me it wouldn't be allowed as it would contravene his human rights. They're a funny bunch at our CAMHS.

 

Our main problem is that J was dx with AS first so the professionals have always accounted for his ADHD symptoms as being part of that diagnosis, hence they won't give a second dx, but I've always felt his ADHD presentation was greater than could be ruled out by AS. The difficulty is getting someone to acknowledge it. And of course he won't get medication without a dx.

 

One thing I do know is that I could not of done Home Education full time and look after J 24-7 with his needs, as well as been a single mum with no family support and found it massively difficult to cope with Js complex special needs which is why he required a 24hr curriculum.

 

It isn't easy, and I wouldn't be doing this by choice to be honest. But without a statement there is no alternative as I can't get him into a special school without one - it would be another bog-standard mainstream and frankly J just wouldn't cope with the transfer. He settled well into his last school because we'd worked so much leading up to that and he was calm. Right now he's a bit of a mess socially and wouldn't fit at all. And essentially I don't trust staff any more, having had such awful experiences in the past of lies, deceit and manipulation. I don't want J in that situation and I know he wouldn't get anything near appropriate care in school.

 

If I could of Home Educated I would of done it from day one and never even bothered with school at all.

Me too, that's my only regret, that I didn't take him out sooner.

 

So from what you've said, I'm still doing all the right things but progress is still limited. I can't think of anything else in behaviour management terms that I could introduce that would help, which is a bit of a powerless feeling. I think I need to pursue this ADHD dx but not really sure how to go about it. May have to look privately.

 

Thanks so much for your time, Jsmum, you're a star!

 

Karen

x

[JsMum]

Hi Karen wow what a reply and a lot of answers that gave yourself answers in answering them,

 

I guess from what you say the main areas where your son is struggling is socially, and his impusive reactions, its very common for children with ADHD to have particular problems with social skills because there actions make it very difficult for interaction, so I can understand why you want to look further into ADHD, however It may be also a good idea to look further into social Areas too.

 

Requesting particular support for these, J presantly for example has a sessional worker who works on his socail skills and takes him out to various venues and activities, This is done throw Social services how ever.

 

At school they are in process of supporting his Social skills with various activities were he has success and failures.

 

Its early days for us still, and so were still aproaching more therapies.

 

JsMum