NOT GETTING ACCURATE PICTURE OF HOW SON BEHAVES

[cmuir]

Hi

 

I'm utterly bewildered about how my son is really coping with day to day life, in particular at school.

 

He's nearly 6 and has been attending a special unit, 2 days per week, for 6 weeks (has another 6 weeks to go). It's run by CAMHS and he's there to be assessed as well as to learn how to identify and cope with his feelings, learn social skills, etc etc. The programme is an american programme and is very over-the-top. The 6 kids attending go to dinosaur school in the morning where using puppets staff teach the kids some of the aforementioned. Fact is, Robert is having a fabulous time. He's in a small class, he's loving the dinosaurs, and to crown it all, the kids are earning chips which can earn them two rewards a day. The staff simply haven't seen the behaviours which I see outwith the unit (something which I find incredibly frustrating!). I've shared my thoughts with the clinical psychologist and expressed that it's a manufactured environment, he's having a good time and earning lots of rewards (something I think is wrong and has actually created more problems than resolved). In addition, the C/P advised me to completely ignore his threats and actual attempts to self harm eg wrapping shoe laces around his neck, trying to run on road, head banging, saying he wants to die because he hates living, etc. I'm horrified. I think it's key not to allow R to be aware how upsetting this is for me to see/hear, but instead distract him, etc. However, I've said to the C/P that at this age he cannot possibly comprehend the enormity of the possible consequences his actions could have, however, a child doesn't behave like that for no reason. His moods are very up and down (almost euphoric/then very down indeed). Fact is, that if this isn't addressed now, when he's older he may well attempt the same and actually seriously harm/kill himself.

 

In addition, school tell me everything great and he's doing really well (yet they've approved continued f/t 1-2-1 support for next year!). Fact is, he receives 1-2-1 f/t support so he's obviously doing well. Every now and again, I hear snippets of things that worry me eg 3 weeks after it happened, heard he'd tried to run out of school. In addition, a visiting SALT who has known R since he was in nursery, painted a very different picture saying that she sees a very complex little boy who becomes incredibly angry and frustrated easily. Yet, R had a SALT outwith school and I was present. I witnessed the SALT having to try exceptinally hard to help R focus - he was very easily distracted. His consultant, after marking connors scales from me and his teachers, concluded that he's outwith the normal range, but not quite elevated enough for ADHD diagnosis. School are saying his concentration is good, yet marking him down for effort in classes - I've suggested that he's actually trying much harder than most kids, but is having great difficulty concentrating. In addition, headteacher told me 6 weeks ago that he's 1.5 years behind other kids for reading, yet at the unit the teacher there says he's doing really well.

 

I'm really confused after hearing lots of differing reports and worried that attendance at the unit where he's having a great time and receiving rewards ('bribes') every two minutes is actually lulling people into a false sense of security. I think this could be incredibly harmful in several areas eg possible withdrawal of LA support, DLA may not get renewed, etc etc.

 

Really getting me down. Not really sure how to tackle things other than at next review meeting to actually put all of the aforementioned in writing.

 

Caroline.

[DaisyProudfoot]

Hmmmm...there's a lot to take in there Caroline <'> >< <'>

 

First I would say, you're little one is obviously happy in the unit and this alone has to be a good sign because it proves that he works well in small groups and is willing to adapt to new social skills through this method of teaching.

 

Secondly I don't think it will lull people into a false sense of security you say yourself that at mainstream school he is still having difficulties.

 

What I'm seeing from what you're saying (and excuse me if I'm being so bold) is a child who is obviously blossoming in a small educational environment but struggling in a large-scale environment. In other words at the end of the programme he will be seen to benefit from this and therefore will most likely receive more support not less.

 

It also gives CAMHS an idea what helps your son to progress and what doesn't.

 

It may be worth finding out the name of the programme and have a look on the internet at some of the American sites and what deductions have been made.

[cmuir]

Hi

 

Thanks for your response. Hope I don't come across as being defensive (you're absolutely right about R doing well in small group settings with support), however, ...

 

My big fear is that CAMHS haven't witnessed the worst of his behaviour full stop and they certainly aren't seeing it in the unit so it's difficult for them to make conclusions (they only seem to make assumptions!). I've asked them to make contact with a social worker who worked with us for nearly 2 years. She was truly the only person who saw everything, she saw R at home with us, in nursery and school, and on his own - CAMHS haven't contacted her at all. At the end of the day, the reason he's at the unit is because his consultant (who is brilliant) has been on the receiving end of his behaviour once or twice. Still frustrating that CAMHS aren't seeing any of this. They simply aren't witnessing the self harming, mood swings, odd things that he talks about, etc) and so I worry about the recommendations they'll make.

 

I've researched the name of the programme (Webster-Stratton Programme) and it's all very positive (call me cynical, but I've only found responses from non-parents, so feel that it's no wonder it's all positive). Main focus is teaching the children social skills and help them manage behaviour as well as running a programme for parents (parenting skills). All very patronising - in the groups I attend, parents are given stickers and sweeties for contributing answers/comments to the group after watching video clips!!!

 

With regards to school, only reason I know things are hunky dory is because others tell me so. School staff are only honest, when pressed and even so it very much depends upon who you speak to as to what kind of answers you get, so again I worry about what will come of all of this.

 

Thanks.

 

Caroline.

[DaisyProudfoot]

I think it would make sense for you to contact the social worker (or the office where the SW worked if they are no longer there) and ask to be given access to the records so they can be forwarded on to CAMHS rather than waiting for CAMHS to contact them. It might be a data protection issue.

[Cat]

There have been quite a few topics here re Webster Stratton and the last time that we contacted Carolyn Webster Stratton she responded by saying that this programme was NOT specifically designed for childern with ASD but they would probably gain something from it. She also confirmed that there was no one in the UK trained to modify this programme for children with ASD - so we got it straight from the horses mouth.

 

Here are the links to past subjects here

 

http://www.asd-forum.org.uk/forum/index.ph...ebster+stratton

 

http://www.asd-forum.org.uk/forum/index.ph...ebster+stratton

 

Cat

[cmuir]

Hi Cat

 

Many thanks for the links. Very interesting indeed. The links have just reinforced how I'm feeling about the Webster Stratton Programme. I've found myself in the parents groups frequently disagreeing with certain strategies. Getting rewards for being nice, paying each other compliments (which become insincere because of keenness to gain rewards!), not addressing issues such as self harming, timeout/punishment when child is in full blown meltdown mode, etc are all examples of things I disagree with. The strategies suggested really don't work - believe you me, I've tried them a few years ago!!! Sitting watching videos and being asked to comment on examples of bad parenting whilst being videotaped, then being given stickers and sweeties is all very patronising!!!

 

I note you say you actually made contact with Carol Webster Stratton who said that this programme isn't designed for ASD kids - WOW! Did you write or email? I'd love to shove that under the noses of one particularly sanctimonious female!!!

 

All in all, I'm really concerned this programme could do much more harm than good (R will now do nothing without demanding a reward - whereas before on the whole he would be compliant and be happy with a verbal 'pat on the back'). I've been told to ignore the self-harming, etc. How helpful?!

 

Thanks.

 

Caroline.

[Cat]

Let me check with the part of the 'we' involved in the Carolyn Webster Stratton e-mail conversation and I will get back to you. I have the mail but it went to someone else - also a member here we were working together. My friend actually dug and dug until she had quite a file by the time we had finished.

 

Cat

[cmuir]

Hi Cat

 

I trolled the net last night to get contact details for Carolyn Webster Stratton and hey presto got a response:

 

Hi -we have had quite a few children in our programs with Aspergers Syndrome

over the years and the parents report success with the program. However, we

don't have randomized research trials with just kids with Autism or

Asperger's. I would think the program would help with management issues

regarding these children and to provide a support group -- but if you could

find a support group just for parents of children with Asperger's syndrome

you might prefer that specific focus.

 

In our studies the children we see have behavioral problems but also many

other comorbidities including Attention Deficit Disorder, Learning

Disabilities and Language Delays and Asperger's Syndrome and other

developmental issues.

 

Best wishes, Carolyn

 

I think the clear message is that the course can help with management strategies (I've found some parts to be great), but it's not specifically for ASD kids.

 

 

Caroline.