BONKERZ...how's it going?????

[daisy5678]

any news?

Have been on and off here recently so might have missed it...

the more i look at the report the more angry i get. I dont have an appointment to go back and discuss the report witht he psych till end of april though.
In thier wsisdom CAHMS actualy state in the report the best way to help DS is to ignore his bad behaviour!! WOW I never thought of doing that!!!! How do you ignore and strong 7 year old boy who is running around the playground stabbing random children with pencils? How do you ignore a child who is banging thier head aggressively and hard against a window/chair/table? how do you ignore a child who is kicking the hell out of oyu? How do you ignore a child who is scraming and shouting uncontrollably at the top of their voice whist throwing everything and anything they can get their hands on?????
IM SO ANGRY RIGHT NOW. How dare CAHMS assume we havent treid these things? How dare they ignore the advice from dozens of other proffessional? How dare they blame my parenting skilss for my sons behaviour! I dont know what to do about it though!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You are right to be angry, how can they possibly say he doesn't meet the criteria for some kind of diagnosis! It's ridiculous to blame your parenting! I just had one other thought: is there anything that your DS absolutely hates that you could use when he kicks you? I ask this because we use ABA on my ASD DS, and when he used to hit and bite, I would wash his hair (which he hates). In time, he began to realise that every single time he did an aggressive action, it brought him a bad result (eg hairwash). Now I just have to mention the word hairwash and he comes back into line. I know not everyone agrees with aversive therapy, but it worked for me and he is now (nearly totally) non-aggressive. Is there anything similar for your DS, although I know it's harder as they get bigger (my DS is 5)? I wonder also if SOS SEN could help with ideas of a private diagnosis person who wouldn't cost the earth - their website is on line and they are a charity which helps people going thru exactly what you are going through.

You are right to be angry, how can they possibly say he doesn't meet the criteria for some kind of diagnosis! It's ridiculous to blame your parenting! I just had one other thought: is there anything that your DS absolutely hates that you could use when he kicks you? I ask this because we use ABA on my ASD DS, and when he used to hit and bite, I would wash his hair (which he hates). In time, he began to realise that every single time he did an aggressive action, it brought him a bad result (eg hairwash). Now I just have to mention the word hairwash and he comes back into line. I know not everyone agrees with aversive therapy, but it worked for me and he is now (nearly totally) non-aggressive. Is there anything similar for your DS, although I know it's harder as they get bigger (my DS is 5)? I wonder also if SOS SEN could help with ideas of a private diagnosis person who wouldn't cost the earth - their website is on line and they are a charity which helps people going thru exactly what you are going through.

thanks for that AMM: i dont think there is anything my DS hates TBH and im not sure a therepy like that would work. DS doesnt seem to be able to remember rules or consequences and therefor what works for him one day will not work after a few days IYKWIM. I have looked at the website although cannot see if they help find people to do private diagnosis as what i can see is they help with statements.

sorry the diagnostic report has been so disappointing. It does sound ridiculous that they reckon the way to deal with his behaviour in school is to film you and him through a mirror!!! I agree with the other ladies about seeking a 2nd opinion, and hope that with the help of your support group you manage to find a better way forward.

thanks TC i have contacted the local patient liason service to find out how i go about requesting a 2nd opinion and making a formal complaint. yet another battle i have to take on!

well patient liason just rang and said they have to deal with this alot. She is ringing CAMHS to find out what i have to do to get connors scale and ADOS done!

that is interesting, sounds like you might have a crap CAMHS!

well i have been told to file a formal complaint and i have also had to ring the psch who referred us to CAMHS who is the person who gave me the reprt on tuesday. His secretary passed me onto the care people who have said they want to try and find an amicable solution to my problem and are following it up immediately and that i should hear from them by wednesday. They have asked if i can hold off till wednesday to file the formal complaint as they will try to find a solution. I must say i did vent and rant at the lady i spoke to and she did seem very sympathetic to my complaint so fingers crossed we can get some more assessments done. I really hope im doing the best thing for DS. Im doubting myself so much right now but my heart and head tell me DS has bigger issues than just anxiety.

that sounds good, if they are desperately trying to hold you off from complaining. Bet it's their annual staff appraisal time and they all want to keep complaints down. Puts you in a good position...!

and by the way, I think headbanging and the other behaviours you describe sound a little ASD/ADHD, so no I don't think he just has anxiety. NF kids do not headbang when anxious imho. Headbanging, aggression and throwing absolutely everything were three things my ASD DS did all the time a little

thanks AMAM@ just a case of waiting to see if NHS ring me now before wednesday i suppose.

Oh Bonkerz...sending more virtual alcohol. Sounds like you have people moving on it all - which will hopefully mean progress. I have a copy of Connors form if you want it. xxx

givemesleep: that would be fab. can oyu email me please???
slittlejohns25
at hotmail dot com

foiund copy of connors forms that someone from here sent me ages ago and have done them with regards home. Plan to take copy to school meeting on 9th and ask them to fill them out so i can take them along to CAMHS. Does anyone know about scoring or translating the results?????

Hey Bonkerz. I see you have them already, so won't send!

I don't know anything about the scoring system - afaik, there isn't a score, but more a contribution to the overall picture e.g. if school and home's Connors forms both say that ds is hyperactive, inattentive and impulsive, then he meets all the criteria for ADHD as it is those three things plus must be present at both home and school, which would fit your ds!

How you feeling?

Connors Rating Scale

Below are a number of common problems that children have. Please rate each item according to your child's behaviour in the last month. For each item, ask yourself, "How much of a problem has this been in the last month?" and circle the best answer for each one. If none at all, seldom, or very infrequently, you would circle "0". If very much true, or it occurs very often or frequently, you would circle "3". You would circle 1 or 2 for ratings in between. Please respond to each item.

1. Inattentive, easily distracted... 0 1 2 3
2. Angry and resentful... 0 1 2 3
3. Difficulty doing or completing homework... 0 1 2 3
4. Is always "on the go" or acts as if driven by a motor... 0 1 2 3
5. Short attention span... 0 1 2 3
6. Argues with adults... 0 1 2 3
7. Fidgets with hands or feet or squirms in seat... 0 1 2 3
8. Fails to complete assignments... 0 1 2 3
9. Hard to control in malls or while grocery shopping... 0 1 2 3

10. Messy or disorganised at home or school... 0 1 2 3 11. Loses temper... 0 1 2 3 12. Needs close supervision to get through assignments... 0 1 2 3 13. Only attends if it is something he /she is very interested in... 0 1 2 3 14. Runs about or climbs excessively in situations where it is inappropriate... 0 1 2 3 15. Distractibility or attention span a problem... 0 1 2 3 16. Irritable... 0 1 2 3 17. Avoids, expresses reluctance about, or has difficulties engaging in tasks that require sustained mental effort (schoolwork or homework)... 0 1 2 3 18. Restless in the squirmy sense... 0 1 2 3 19. Gets distracted when given instructions to do something... 0 1 2 3 20. Actively defies or refuses to comply with adults? requests... 0 1 2 3 21. Has trouble concentrating in class... 0 1 2 3 22. Has difficulty waiting in lines or awaiting turns in games or group situations... 0 1 2 3 23. Leaves seat in classroom or in other situations in which remaining seated is expected... 0 1 2 3 24. Deliberately does things that annoy other people... 0 1 2 3 25. Does not follow through on instructions and fails to finish schoolwork, chores or duties in the workplace (not due to oppositional behaviour or failure to understand instructions)... 0 1 2 3 26. Has difficulty playing or engaging in leisure activities quietly... 0 1 2 3 27. Easily frustrated in efforts... 0 1 2 3

Completed by__

Role/position/relationship to child__

Date completed Signed ___

I found this,
hope you find it useful.
HTH

Hi Bonkerz

I've just been skim-reading through this and your situation sounds very similar to ours with DS who's now 9 with a dx of AS. We knew J had behavoural issues outside the norm from about 2-3 years, and I strongly believed he had ADHD. In Reception he was observed in school by a psychiatrist and I later found out that the Head had withheld information that would have led to full assessment - as a result it was left there with a 'wait and see' outcome. They didn't even get as far as Connors forms.

By Y1 things were so far out of hand that I insisted on him being assessed at CAMHS. Although the paed told me she was 99% convinced he had AS and his ADOS suggested he should definitely be placed on the spectrum, he didn't tick all the boxes so the outcome was inconclusive. They wouldn't give a dx of PDD-NOS as an interim measure to ensure appropriate support was in place - he was either normal or not and in this case, not. LIke you, we were given insanely patronising advice on how to manage him (the naughty step, sigh), which like you we'd done to death so we knew he needed more. So school continued to not support him and his behaviour got worse.

We went for a second opinion assessment and this came up almost a year later, when J was 7 and a half (5 years after we'd first suspected something was 'wrong'). They dx'd in five hours, HFA/AS with no uncertainty whatsoever.

During this time we'd treated J as though autistic, following methods we'd learned through NAS Help courses and seminars and what we'd read in books and on the internet. As a result J has made amazing progress and is doing very well. However, although many of his autistic issues are being managed he still has ADHD symptoms and we're approaching CAMHS again to look into this further. Unfortunately, we've effectively cut off our own noses because by doing all this work with J his problems are much less obvious than they used to be, so it will probably not be recognised.

Anyway, my reason for posting was to urge you to go for a second opinion. You know your child well and it's clear that there are issues that need to be supported. You need that dx for him (whatever it turns out to be) so go for it.

thanks deeja, yes thats the form i have.
Givemesleep: thanks again for the help. i have filled out my bit and will get school to fill out one on 9th and then force posych to look at it. Still waiting for phone call from Psych though. If nothing by tomorrow lunch time i will be ranting onphone as psych goes off again tomorrow for 3 weeks leave! Feeling a bit let down and angry still. Very tearful especially cos we have just taken DS to soft play with DD and DSD and DH and he kicked off which is very embarrasing! HAve also had to cancel simming tomorrow as it is just too dangerous with just me and i cant get help to go! How can this be normal?>
Karen, thanks for your story. i will keep pusing for second opinion, i dont have much choice. I dont know many 'normal' children who need 32.5 hours of support at school and i have had to prove so much to get that so surely that speaks volumes!

Well im shocked to say the least. I decided to ring the psych to check he had got my message. I got a phone call back from his secretary saying that he recommends we go ahead with a formal complaint as he will not be recommending a second opinion. I have also been told im harming my son by going for further assessing and that im just a parent what do i know!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Make sure THAT goes into the formal complaint!

It's not about just your opinion - if he was fine at school, I'd sort of see the point in taking the parent's view slightly less seriously, even though it's very wrong, but TWO educational establishments agree with you that something is very wrong, so why are they being arsey with you for trying to find out what?!

You are NOT harming him - you're trying to help him and you know it...and so do they, really. Just arrogance on the psych's part - block it out!