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HELP AND ADVICE

74 replies

paganmummsy · 21/07/2010 16:38

i am desparately seeking help and advice for my little boy age 9. At present my little boy is in so much difficulty and at present has been diagnosed with having Attachment Disorder by CAHMS. I am most definetly not happy with this diagnoses as like many parents i have researched quite a lot on the disorder and my son just does not fit the criteria for this disorder. I shall give you a little more detail of my sons story.
During early pregnancy i had an operation to remove an ovarian cyst, a pregnancy test was not administerd so the surgeons and myself did not know i was pregnant. the birth was also very traumatic as i was in labour for an awfully long time resulting in baby opening his bowels and consuming his waste causing him distress which resulted in an emergency ceasarean section.
he was thriving as a baby, very alert, developed normally, was very quite forward with motor skills i'e walking, talking etc......It was when he was nearly 3 years old i started noticing a few things that was not quite right. He would line up his toy cars and if one was to be knocked out of place or moved from where he had put it he would become outraged resulting in headbanging episodes. He had an enjoyment of collecting stones until he found his real love which is robots, he adores them and still collects them to this day and has over 50 of them as this is all he ever asks for as presents. When he started nursery it became extremely stressful as everyday the teacher would call me to say that he was distructive in nursery and found it hard to play with the other children. He would often make friends but not keep them for long as he would only end up hurting them.
I eventually enterd him into mainstream nursery when he was 4 only to be confronted with the same problems. He had no attention span, would find it hard to engage with the rest of the children and eventually i took him out of the nursery as it became too stressful and i felt that the other parents were not happy. I had sought advice from my health visitor who then tried to offer parenting strategies of which i was already following as i am a very hands on mum and am always attentive to my childrens needs.
As he became older it got harder and harder to do normal everyday things as he would 'perform' on a normal shopping trip or even just going to visit family.
This all then prompted me to seek medical advice where i was referred to Dr Rabb at the child development clinic at heartlands hospital. It was here that my son was diagnosed with ADHD. his problems started to escalate and eventually i found myself being socailly deprived as we were never asked to family gatherings. he didn't make friends and i was starting to become extemelly worried. He would become startled at certain noises, didnt like certain noises even the tone of his little brothers voice will get to him and that still happens to this present day. To cut an extremely long story short his life has become upsettingly unsettled and this is what has bought your name to my attention.
my son has been excluded from mainstream school permanently because of his behaviour, there have been CAF meetings a CRISP in place assessments by CAHMS EDUCATIONAL PSYCH involvment and i just don't seem to be getting anywhere.
The ATTACHMENT DISORDER diagnosis has been given by CAHMS and deep down and as being his mum i feel in my heart that they havent carried out a proper assessment even though it has taken months to even get to this point and being told that they are still working with my son and they don't think that the diagnosis will change.
The only thing i feel that they can diagnose my son with this disorder is because of the birth and pregnancy.
I believe that my son may not have ATTACHMENT DISORDER because
A) I am his biological mother, and he has a stepfather that has been with us since he was a tiny baby
B)he has never been in care at all, never abused, never neglected etc.....
C) has always had a normal family enviroment
D) Has been loved and is loved and always being told he is loved and he never refuses a cuddle or family group hug with his siblings
E) he was fine up until the age of 2 going on 3 years old
BEHAVIOUR INCLUDES
1)disruptive
2) angry outbursts sometimes results in smashing things and throwing things
3) misbehaves when we take him out socially
4) unable to take a joke with anybody so i am always walking on eggshells incase a person says something that Kian don't understand
5) controlling, always has to be in the lead when playing games and cannot take loosing a game
6)cannot make friends easily or sustain friendships
7) opens and closes the fridge door a number of times to make sure that the door is properly closed
This is a few to name. Attachment Disorder just does not seem to fit the bill with him and i am finding it extremely hard to take it in, i just don't see him to have this disorder as he is a loving caring little boy and wouldn't even take part in donkey rides on a recent family holiday as he said it is cruel and the donkeys must hurt.
he now attends a key centre where he has also had a fixed term exclusion for his behaviour and is only able to attend a couple of hours in the afternoon of which is for only 2 days a week.
I feel that his case has been treated unfairly and he is no longer having a full and proper education and i just don't know what to do for the best.
I am in desperate need of help and advice for the sake of my little boy.
Thankyou for taking the time to read, i could go on forever with my sons story.

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Lougle · 21/07/2010 19:44

PM, no problem at all Do phone the LA and ask when exactly he will be receiving his entitlement to a full-time education, and how they intend to deliver it. Some mutterings about Disability Discrimination might help, too.

paganmummsy · 21/07/2010 19:48

ReasonableDoubt

Thankyou, i shall give them a call tomorrow, i may even find that my sons school excluded him wrongly under the disability discrimintion act

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nicky693 · 21/07/2010 19:52

I have just read your thread and its frustrating even to read, let alone going through it. Poor you and your family

The correct diagonis seems to be a postcode lottery, its really unfair. I dont really have any more advise to bring to the table but just keep taking one step at a time and continue to fight your sons corner.

My son has ASD and ADHD and although he is placid in school he has a lot of your sons traites, and ASD can be a ginetic thing so dont understand why it has been ruled out.

Let us know how you get on.

SanctiMoanyArse · 21/07/2010 19:52

pagansmummy he has loads of problems with transition, although it has got worse I think. We have 2 kids with ASD so we are used to doing lots of warnings etc but it's still hard work.

His meltdowns are legendary too; has been known to kick through a wall.

DS1 had a similar birth, although I didn't get teh C-szection- basically I had been in and out with BP issues for weeks, then started fitting and was rushed in for CS; when I got there the Obst looked at me and said oh not you again you can go home in the morning. Didn't see anyone that morning, wheeled over for scan; went for a shower next day and came back to find a note saying ds1 had lost 1lb in utero and theyw ere planning emergency induction. he got distressed during labour but with eclaimptic conditions there is a risk of a syndorme called HELLP so they have to be really careful about bleeding and they lost my bloods twice. Then there was no spare anaesthetist as they ahd taken another high risk woman down with only one on the ward.....

I consider myself pretty lucky to have him and at 5lbs 5oz he was a fighter, sister had same issues and her ds was in NICU for months. He's fine now though and ds1- well. Funny how it works out huh? Mind, ds3 had a perfect birth, 3 hours etc and attends an SNU and is quite markedly asd.

ArthurPewty · 21/07/2010 19:54

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SanctiMoanyArse · 21/07/2010 20:02

You'd think with the Unio courses there they would know what theya re doing wouldn't you? Sad.

Saying that, we've had 2 dx's, one complex and taking years, yet I never actually encountered any of the local experts that teach at Uni . They always seem to be for teh next level up. Or have full books.

Typical.

paganmummsy · 21/07/2010 20:03

This is my first day using MN and to be honest this is the first time i have ever felt supported and from complete strangers, its remarkable, i havent had any support over the years from my nearest and dearest, i think maybe its hard for them to understand. Yes i am in Birmingham and i will deffo have a rant about brum lol. I have spoke to Dr Congdon on the phone and he has been most helpful in fact it was he that gave me the gentle push to start questioning attachment disorder. He also bought to light the fact that my son is left handed and whilst at school he didnt get any extra help and had to struggle using equiptment that right handed kids were using, this could have filterd his anger even more making him frustrated and to misbehave.

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tribunalgoer · 21/07/2010 20:07

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tribunalgoer · 21/07/2010 20:08

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paganmummsy · 21/07/2010 20:09

SanctiMoanyArse

Its unbelieveable how families are treated these days, i went to the proffesionals for help and instead of giving me help i found myself being assessed in the process. I remember noting down all of my sons behaviours at home whislt we were out and literally poured my heart out explaining exactly what i have to go through every day with my son, only to be told that what i had written looked as though i had copied from the internet and that i was pushing for a diagnoses of asd, my reply to that was, i dont know if i should take it as a compliment that you think my written work is of high standard, or that you are starting to get a little frightend because you arnt doing your job properly, and that was the educational psychologist that had insulted me with that.

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paganmummsy · 21/07/2010 20:13

thankyou to tribunalgoer who has been really helpful with helping me use MN thankyou

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tribunalgoer · 21/07/2010 20:16

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AgnesDiPesto · 21/07/2010 20:22

This place in Nottingham do second opinions but you would need to get your PCT to fund it here - you could ask your GP to make a request to the PCT to fund it.
They say they are good at the more difficult to diagnose cases.

My DS has classic autism and developed completely typical until he was 2.2 and then regressed. He didn't start doing the lining up / obsessional play until he was 2.7.

ArthurPewty · 21/07/2010 20:29

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paganmummsy · 21/07/2010 20:40

OMG i really do feel like me and my son have been treated like shizzle, i was told there was a CRISP in place but i have no reports to show of it, the only thing i have is the pigheaded head teachers reports telling me what a bad misbehaved child i have I think i better start seeking legal advice

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paganmummsy · 21/07/2010 20:43

Ok, i have just rooted through my paperwork at the top is a link and it says CRISP report, this was from the educational psych,
can anyone tell me what the band scoring means please

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ArthurPewty · 21/07/2010 20:45

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ArthurPewty · 21/07/2010 20:47

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paganmummsy · 21/07/2010 20:56

Looking at the banding score shows that he has 6 banding score 0 this for his things like language etc...he has 3 in the banding score 1, he has 1 in the band score 2, he has 5 in the band score 4, and 3 in the band score 5.

from the information you have given me wasnt it obvious they wernt coping with him or his needs at school

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tribunalgoer · 21/07/2010 20:57

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ArthurPewty · 21/07/2010 21:06

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paganmummsy · 21/07/2010 21:07

I have an awful lot of evidence from the little red child book that you are given from birth, it is documented in there the very first time i asked advice about my son and his behaviours signed and sealed by the health visitors, i have every medical appointemnet letter, every little shread of paperwork handed to me from the school,
if at the end of my battle, the diagnosis of attachment disorder doesnt change, i will start a new battle of the misdiagnosis of ADHD, and the loss of valuble help should the diagnosis have been right in the first place. after all this has been going on now for 7 years

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ArthurPewty · 21/07/2010 21:08

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ArthurPewty · 21/07/2010 21:14

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paganmummsy · 21/07/2010 21:15

yep he has five '4's and three '5's
I dont think it is a school within your area, i am near the town centre by the bcfc ground. my youngest son is at the school and doesnt seem to be having any difficulty but as far as i am concerned they have no idea on how to deal with children with difficulties and seem to think they can, only to be ripping off the hand of the fund payer for the help for these kids. if you were to read the reports from the school it would break your heart and i was almost tempted to do to the headteacher what she had put my son through with no understanding, but there again i'd probably be diagnosed with attachment disorder too.

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