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Not sure if I'm in the right place but need some advice....

(22 Posts)
LoopyLena Thu 15-May-08 17:41:44

To cut a very long story short, DS2 has major problems!

He lost his brother when he was 3 years old and his personality changed. He became moody, aggressive and violent. This has caused major problems with school, he is constantly in detention for fighting, he's been threatened with exclusion and now the head wants me to take him home every lunch time.

This is not practical as DD has DDH and we are struggling with that, she also has other problems and trying to fit in around hospital apmts is difficult.

As well as loosing his brother DS2 lost his grandparents last summer within weeks of each other and he has a disabled baby sister. Me and his dad divorced when DS2 was 2 and he's moved house 3 times!

He's in year 3 now and every report and parents eve has been the same. Accademically, he's top of the class, exceeding national expectations, but for listening skills, behaviour and social developement, he's well below national averages.

Since reception, he has been placed in a 'friendship' group, which is basically a group of 5 boys, all with similar behavioural problems to DS2. Although none of them have been threatened with exclusion.

I have often questioned why these boys with Social developement issues have been taken away from the rest of their peers at lunchtimes... how can they learn to interact and socialise if they are being singled out?

Now the head is asking me to completely remove him from school at lunchtimes because he has thumped two kids this week.

DS2 isn't a nasty child all the time, he seems to have a split personality, he's been under a psychologist - but didn't really get anywhere and in year 1 the teacher was watching him closely to see if there was a trigger for his violent outbursts. She said she saw his facial expression change and he just 'flipped'.

He can be the most gentle, loving, affectionate child one minute but without warning, he can just lash out. He says he wants to be good and doesn't know why he does it. He also has major difficulties in large crowds, he runs around, hiding behind things, he can't walk normally, he almost jumps and skips along. He has very poor concentration and gets very emotional. He actually woke up crying one morning last week but didn't know why.

I just don't know where to turn. The school just seem to want him out the way, rather than try to help him and the GP didn't seem interested when I mentioned it to him.

I just feel like it's all closing in on me, DH works away a lot, DD is in a hip spica and needs a lot of my time and attention, we are facing the possiblilty she may not walk due to other problems and DS2 seems to be getting worse, the school don't want to help - just get rid of him.

Where do I turn???? sad

ancientmiddleagedmum Thu 15-May-08 18:00:53

God, poor you Loopylena - you have got a whole lot on your plate!! Has he been assessed for ADHD and aspergers -not saying I think that he is necessarily in that area, but what you say about him not liking crowds could be similar to aspergers, plus might the whole crowded school experience be too much for him and that's why he lashes out? I know some people don't want their kid to have a label, but in fact in some circumstances it would actually help as the school can't just treat him and discipline him as they would a "normal" child if he is found to have SEN. It would actually go against the Disability Discrimination act to punish him as if he's just naughty! I have an ASD son of 5 who used to hit, but I stopped him doing it by having an instant, immediate and unpleasant santion - in my case, hairwash was the sanction as he hated it. Could you use no tv or no computer time, or he loses a book he loves? I'm sure you've tried all that though, so really I'm just babbling now but I'm giving you big hugs!

LoopyLena Thu 15-May-08 18:21:15

That's interesting... DS2 also hates hairwashing...or infact any kind of personal hygiene!!! If i try to cut his fingernails you'd think I has killing him - and haircuts - OMG! The whole town must hear him scream!!!! I have tried all the usual 'bans' like his DS, the PC, TV, but he doesn't seem that bothered. He's been asking for his DS back but I keep saying he can have it when he proves he can behave at school - to which he just says OH, OK.

He has never been assessed - where do I go for that? Would it be through the GP?

ancientmiddleagedmum Thu 15-May-08 18:32:24

Yes, via the GP. Ask to be referred to a paediatrician for assessment for aspergers. Does he have any language oddities - eg is he over-precise or literal in how he talks? Or is he impulsive and always on the go? Did the psychologist he saw say anything?

LoopyLena Thu 15-May-08 18:48:24

Not sure about the language, although he takes other peoples comments very literally and to heart and gets upset easily. He can also be very repetitive and I have to tell him to stop saying something over and over again. He is always on the go, never able to keep still, fidgets and fiddles with things constantly, psychologist never really did much! DS was under her for 18 months and in that time she mainly spoke to me and his dad and the school, it never really went anywhere.

I think I will get a GP appointment.

ancientmiddleagedmum Thu 15-May-08 20:05:05

you can google aspergers on the net - but basically, they have some social problems and some problems understanding subtle social situations or unclear language. They can sometimes have obsessive or repetitive behaviours or interests which they will go on about beyond the point at which others are interested (mind you, that could be quite a few boys/men!). My boy screams the neighbourhood down for haircut and nails too (though funnily enough he is just about ok with fingernails, but much much worse with toenails. Who knows why?!). Perhaps your boy is lashing out because someone is getting into his space and he can't cope any other way, as the haircut etc could point to some sensory problems. Autism and aspergers are spectrum conditions, which means you can have it very very mildly or severely, or anything in between. I suddenley realised the other day that my DH , although otherwise not aspergers or autistic, absolutely hates having his head touched and also lines up the remote controls every night in the same pattern! if you google aspergers and it seems to fit, or ADHD, go in armed with what you've found out so the GP won't fob you off. Good luck!

LoopyLena Thu 15-May-08 20:08:48

DS2 is slightly worse with toenails too!!!!

Thanks for all your help, I'll get googling!!!!

ICantFindAFreeNickName Thu 15-May-08 20:29:50

I don't know if it will help you, but when we visited our gp about our son I had written down a list of all the 'odd' things, naughty behaviour, social problems etc. It really helped because I did it one night when I was at the end of my tether and added to it over the next few days when I remembered other bits. I then just handed it to our GP and let him read through it. He said that individually nothing obvious jumped out at him, but with so many things listed he agreed that we needed to get my son tested.
With all thats happened during your sons life, there is chance they will just try and fob you off, but if you think there might be more to it then that stick up for your son & yourself and insist on an assessment.
Good luck

sasquatch Thu 15-May-08 21:19:56

Your experience sounds somewhat similar to mine. My ds like yours at that age and very unhappy at school. he was excluded in year 7 and then I sought diagnosis, and recieved dx of aspergers after about 6 months. Same with fingernails and haircuts amongst other things. Now he just has very long fingernails as at thirteen he wont let me near them. It is a sensory thing adn interesting that at his age, he can now explain some of his difficulties, in this case he says he cant stand the feel of anything by his fingertips so having long nails protects him.

Anyway, having gone off the point a little, We are going to start a social skills group for parents and children at CAMHS next week, this is because (and you may have found with your ds, as I have) children with AS can Learn some social conventions that donot come naturally. For example ds never showed sympathy if other hurt themselves but learned to once I explained to him literally what to say in that situation. So this may be why your ds is in the group at school, even though I would also question the frequency of the group if he is not getting an opportunity to practise these skills.

Best of luck, And Im sure your ds also has lots of strengths as you mention.

LoopyLena Fri 16-May-08 12:12:49

I've made a GP apmt for tuesday at 8.40am. I've written my list!
I'm not going to be fobbed off!!!

Thanks everyone for your advice and support.

LoopyLena Fri 23-May-08 15:40:32

Just to let you know... DS2 has been referred to the community pediatric team for an assessment.

Thanks for all your advice. wink

ancientmiddleagedmum Sun 25-May-08 16:21:01

I'm very pleased you got the assessment Loopylena - let us know how it all goes.

LoopyLena Thu 02-Oct-08 18:56:47

It's been ages!!!!

DS2 had his initial assessment with the paediatric team. They feel he does have a ASD and refered him to CAHMS.

I had forms to fill in from CAHMS at the end of June.

Posted them back early July... still waiting!

I'm pleased to say there is a new head at school and she is lovely and that seems to have made a huge difference to DS2, he's being rewarded for every little thing he does good, instead of being in permanent detentions for silly little things he does wrong. He is liking school a little more this year.

Personal hygiene issue still a problem, you'd think acid was coming out of the shower and I was cutting his fingers and toes off and his hair!!!! He hadn't had it cut for months because he wouldn't let anyone near him!!! My god it was soooo thick! Finally got it cut last weekend. He almost hyperventilated!!!!

Will update again when or indeed if I ever get to see CAHMS

dustystar Thu 02-Oct-08 18:58:48

Good news about the headsmile Have you rung up to chase CAMHS? I know a couple of people whose referrals etc seemed to get lost in the systemhmm

PheasantPlucker Thu 02-Oct-08 19:18:04

Fingers crossed you get some help and answers x

LoopyLena Thu 02-Oct-08 19:22:10

Might do that, so much on at the mo with DD too, it's a nightmare!!!

LoopyLena Thu 02-Oct-08 19:27:59

Just though..I may as well tell you what's happening with dd too!!!!

DD's gross motor skills were all delayed and she has never been able to weightbare. DD saw physio in december last year as GP thought is was muscle strength related, they refused to do anything with her as all her joints were dislocating!!! I had to go back to the gp and ask for a referal to orthopedics. That appmt came through for Jan this year, she was dx with Hypermobility. She has severe Hypermobility in her lower limbs, not as severe in her upper body (beighton score 9/9!!!) Xrays revealed she has Bi-lateral CDH both her hips are completely dislocated, always have been and sockets have never formed!!!! She spent 23 days in Traction, tied up by her legs in hospital then has closed reduction to position the femors correctly for the sockets to grow. This was in February. She then had a hip spica applied. This is a cast from her chest to her ankles, this procedure failed because of her hypermobility - she dislocated inside the cast!!! It was repeated in April only to find it had failed again in July, despite having grown perfect sockets. She then had a 6 hour open surgery on both hips. She is still in a hip spica cast as her hips will not stay together, her feet rotate 180 degrees, her toes dislocate so we have to be careful putting her socks and shoes on, her knees are inside the cast - but they dislocated too before the cast went on. Her fingers have started to dislocate, sometimes particially - sometimes completely, which makes her really cry. sad Her shoulder came out once and went back in.

The surgeon has also told us dds skin is very elasticy and stretchy.

She's been in a full hip spica cast now for 8 months and has another 4 months at least, followed by braces, orthotics and paediatric boots. We still don't know if she will ever be able to weight bare.

DD has been refered to a consultant geneticist, it looks like she has Elhers Danlos. People I have spoken to about her Hypermobility are all concerned that a year in cast being immobilised is preventing her muscle development - therefore when the cast does come off the joints will dislocate again as there is nothing to hold them in place! For this reason i have requested a referal to Great Ormond Street Hypermobility Clinic for expert advice, in the hope that they can then work with her hip surgeon and come up with the best course of action!

What a year!!!!

Tclanger Thu 02-Oct-08 19:28:45

Message withdrawn at poster's request.

Arabica Fri 03-Oct-08 00:44:58

Oh, your poor DD. I can't really say anything helpful as my DD's hypotonia is only mild. But just wanted you to know I was thinking of you after reading your posts.

LoopyLena Fri 03-Oct-08 13:36:18

Thanks. wink How old is your dd?

Arabica Mon 06-Oct-08 00:27:32

She was 2 at the end of July. Her hypotonia just makes her a bit unsteady on her feet--she sees the orthopaedic team once a year for x-rays but her hips seem to be OK.

sphil Mon 06-Oct-08 09:34:43

Just wanted to say - you sound very positive and upbeat, even though you've got so much to cope with. Your Dcs are very lucky smile.

Have you tried social stories with DS? Maybe with pictures - explaining exactly what will happen when he has his hair cut etc? The other things that helped with Ds2 are letting him watch TV while it's being cut and wetting his hair beforehand - it seems to make a difference to the way the scissors 'sound' and also means that he doesn't get a shower of little tickly hairs on his skin.

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