Advice please

[pops666666]

Im just wanting a little advice from anyone who can help, I have an 11 year old and since being born he has always been different. When he was 1 the doctor thought he was at the top end of the scale of hyperactivity but I didn't go down the route of medication and just coped. Now he is due to go to senior school and it is a real concern to me how he will cope. Various comments have been made over the years at his primary school about him by his teachers such as he has a very adult sense of humour and I was even told by one teacher that my son has schitso episodes. I have mentioned it to the school that I thought maybe there was an underlying issue with him but they just tell me they will look into it and then I hear nothing. He has always had issues with his eating but I am constantly told that he is just a fussy eater but it is much more than this. I can count on one hand the number of things he will eat and woe betide me if its not the same brand. Textures, colours and shapes seem to play a very big role in it. It effects family life as we are unable to go for a meal without scrutinising the menu first and holidays can be a nightmare. Going away with the school is just a worry, he has only done it once due to his eating habits and it was only for 3 days and he came home half starved. Recently he has started having what I can only describe as panic attacks where he tells me his throat is closing up and he cries but cant tell me why he feels this way. I went to the doctors again and finally this one seemed to listen to me. She said she was 99% certain he had asperges and she referred him to a dietician, at last I felt as if I was getting some help only to be rejected by the dietician as his BMI was ok. I feel so frustrated by it all as Im just not getting anywhere. Yes my sons BMI may be ok but its not ok that he is surviving on such a restricted diet. I have got another appointment to see my doctor on Wednesday but Im not really holding my breath on getting any help. I have read some books on Asperges and there are things in it that I can connect with my son. I just feel so down about it all.

[Bunny4jeff]

Hi,

I'm so sorry you are having this trouble trying to convince the powers that be that your son may have Aspergers. I think it's time to speak to your doctor and tell him all the things that make you think he has Aspergers. Make a list and bring it with you, in case you forget anything, and make it clear you would like him checked out, there'll be a waiting list but once he's on the waiting list you'll know the first steps have been taken to get him diagnosed one way or another. I hope your GPS is sympathetic, if not, change to another. You can go private to get diagnosed quicker with a recognised test but it can cost around £1,000.

[broady61]

Hi Pops,

You have pretty much described my son of 11 in your wording! I have tried getting help from school for the past 2 years, they have done SEN assessments and monitoring and nothing back besides he his a happy child. Besides only having 1/2 children he "tolerates".

We have also been to the GP and they reckon it is just part of growing up, they made it pretty clear if school aren't worried they aren't and he will soon grow out of it!

He is rather advanced at math and science and only struggles with hand writing, but told the teachers, he will type his words!

He is not naughty at school or disruptive, but comes home an emotional wreck! He can also be quite aggressive/violent with it. He does also frequently get bullied due to certain traits such as wishing to put his hair up in a top knot and not being intersted in main stream sports.

Recently he actually befriended some girls at school and told them he was thinking about suicide...now they have brought us in and want to do art therapy and all sorts of BS!

He leaves the school in 8 weeks and i feel they have failed him for years.

Hopefully we may get a bit of support before the end of the school term to get him on the road to help.

How is your son doing and have you got anywhere?

P

[pops666666 in reply to broady61]

Hi p

I did go back to the doctors and she referred him to a clinical psychologist because of his panic attacks. We have since had an appointment with her and she is going into his current school to do an assessment. We have a further appointment to go and see the clinical psychologist to fill in an ASD form. We still have had no support from his current school but fortunately the school he is moving up to has been helpful and we have an appointment to go and see them and they will explain their support system.

I think what you are going through is terrible and it must be any parents worste nightmare to hear their child has though about suicide. I would take him straight back to the doctors and tell them this it's horrendous that it has had to reach this point before anyone has listened to you.

I hope things get sorted for you.

[broady61 in reply to pops666666]

Sorry pops for the late reply and thanks for the response!

We have since had token "therapy" responses from school, which have given him a break from pretty much the bullying. Also we have been down a heartbreaking 2hour appointment filling a referral form discussing his traits and emotions and showed they knew a different child!

I asked for a copy of the referral for after being told it would be September at the earliest for action to happen after it going to a panel in June, that got delayed for "impact north". I asked his mum to book an appointment at the GP, armed with the report I went to the appointment without him. The doctor listened and booked an appointment for today and told me to bring him. We went, he referred him to camhs but warned me to be prepared to fight!

I do believe my boy has Asperger's, he even agrees he has all primary traits at minimum.

We also sat in a meeting last Friday to meet with the Sen manager at the school he was transitioning to, which felt like it went very well. She was aware of his transition day (today) and saw him fleeting this am and not since.

He was due to meet his sister at 3.15 (school finishing) he was so confused at 2.45 when they let them leave he walked home alone after the worst day he's ever had without being waiting for his sister.

The night prior he was a mess because I couldn't give him a rundown of what to expect!

I feel broken at the minute!

P

[pops666666 in reply to broady61]

Its awful what you are having to go through, We have had one appointment so far with Cams which was traumatic as my son got very upset. They asked a million questions of which I understand but it was as if they were trying to find something that we had done wrong to blame for why he is like he is. We have 2 further appointments with them this month. We also have met up with the SENCO at his future school and it all looks very promising but I am just hoping that they follow it through as it doesn't sound like they did for your son. The school that my son is going to has a place where he can go its a sort of unit with computers and games and a garden if he doesn't want to be in the big crowds at break times does the school where your son is going provide this? Speak to the school again and express how disappointed you are in his first day support and let them know he needs more support. Will he finish at 2.45 every day and have to wait for his sister, if so maybe ask if the school can help by reminding him to wait for his sister maybe in the reception area, hopefully he will meet new friends and they will help him too. I feel for you and your son its just awful him having to go through this and for you to have to see him go through this. I hope you get sorted sending love and thoughts to you x

[broady61 in reply to pops666666]

Hi again pops,

thanks for the love and thoughts!

I hope your lad starts to find it easier to open up and not feel as though it is an inquisition when at cahms! It looks like he will have a pretty solid support system available to him when he starts, which fingers crossed will be excellent for both you and him!

I am expecting them to try and find a way to turn his issues into a "Parenting" issue! Let them try!

He went back to his primary school today, and had quite a good day (a lot of the kids have already moved on to their new schools, 2 week transitions etc) so most of the kids he doesn't get along with/pick on him are not there!

We have been in touch with the support staff at his current school to express the disappointment we felt and the anxiety and stress he went through and to be fair, she was rather upset herself.

Fortunately, he will finish at the same time as his Sister every day in the future, so wont have that issue again. I am more concerned now though, that he has been able to get up and leave once, what will stop him doing so in the future should he have a meltdown?

I will take your advice and make an appointment to see what support the school can offer him, like you mentioned just for a break or to get away from the noise and crowds.

I have also explained and asked him to consider how he wears his hair, as this is something he will get picked on about and it is something he can change, or he tries to grow a thicker skin and not worry about other peoples thoughts... he is still considering, but i know he will not change it deep down and I don't want to force him to, he is an individual and should be able to chose how he wears his hair...i don't get him his clothes out each day and tell him how to dress!

Anyway, hope you keep in touch and you both stay strong.

Thanks again