does nobody care

[sam1414]

my son is nine soon to be ten ,he is so special to me but the world outside is harsh to us both he has asd and it seems that no one understands ,even my friends dont really understand .i feel alone in this world that me and r share between us .i ve had another bad day i m exhaused but can t sleep .he is refusing point blank to go to school today ,because its swimming and he is in the big pool just moved up from the little pool ,.he hates it so much .it breaks my heart to watch him struggling every day at school ,he is so far behind but school do nt care they do nt seem to understand .yet again they kept him in school all day with aheadache no matter how many time i tell the school to ring me they do nt ,r says he tells the teacher but he is ignored so he dont say any more ,when he gets home his head is throbbing and he feels sick its a nightmare every day ,we have to go through a ritual to get him to take his medicine which takes ages .im despairing i just so alone i do nt no which way to turn .i m struggling to carry on working ,the csa have nt paid me for 2 years. dla have rejected us again. school is withdrawing some of r s time with special needs teacher and r is struggling more every day .his night time meds have changed so he is refusing to take them i hope there is some light at this dark tunnel we are stuck in i m desoperate for some good news

[Frangipani]

Hi Sam,

 

Sounds like you are going through a bit of a rough time at the moment. <'> There is help but we seem to have to fight for everything we get. Sounds like you need to get your sons doctor involved or whoever has made the diagnosis, as by the sounds of things you are definitely not getting the support you are entitled to.

 

Maybe even a change of school is something to consider. I have had to make this decision on occasion as some schools are just not equipped or capable. They just put them in the too hard box, and thats not fair to your child.

 

Sure someone with lots of answers will come forward soon. Just sending you lots of these <'> <'> <'>

 

Hope things start to work in your favour real soon.

 

<'>

[mossgrove]

Sam

 

The outside world can be a very harsh place at times, especially when youir child has Autism.

 

The best thing about this forum is that there are loads of people who do care, and are happy to offer advice and support.

 

You didn't say if your son had a statement, if he doesn't it would be agood idea to apply for one, so there can be a proper, impartial asessment of your son's needs.

 

Are there any support groups in your area? Meeting other parents in the same situation is important in reducing the sense of isolation.

 

Simon

[PinkSapphireAngel]

I think there are times when we all feel exactly like this because we are having to fight so hard and it feels like we are getting nowhere.

 

You really are not alone, this place is a lifeline for me.

 

I think getting the assessment (which of course is another fight I know) is your best start as well as looking at other schools.

 

It also might help to talk to IPSEA or ACE to see what more you can do and what support you can access.

 

Have you appealed DLA?

[JsMum]

I really feel for you and your son, and sadly there is many more mums and dads out their feeling just as you do right now and sadly we have to raise our concerns more and more these days.

 

I care and so do many on here.

 

just so you know that someone is thinking of you I will stand forward and say I care, I cant do out practically but I will listen and try and find some ways of helping you.

 

I have a few suggestions here:

 

Have you a carers centre, these are fantastic and they can support you with the DLA and your sons Educational Rights and look into respite, and offer emotional support.

 

Ask your local library for the nearest careres centre or Council services.

 

Secondly have a meeting as soon as possible with your sons schools senco and share your concerns that you have and how you are concerned about them reducing the hours in support.

 

Has your child got a statement of SEN?

 

If he hasnt you can request the LEA to assess your childs needs.

 

You can contact the Parentpartnership and get more details from the service about statementing.

 

Secondly visit your GP as soon as possible too and ask for a longer allocation as it is discuss your childs behaviour and diagnosis.

 

He may be able to refer you to the disability team.

 

There is support groups that have the leaders number if you dont want to go to a group just ask the leader if she could support you over the phone, and go from their.

 

NAS have local information in your area, Nas have a website.

 

I agree that an other appointment with his specialist is very needed here and I would ring and ask them if you can have an urgent appointment.

 

Looking at your post it could be that school are not managing your child and he isnt coping and so at home he is stressed which is why he cant sleep and doesnt want the meds as they make him.

 

 

I really want you to know that we do care, so please dont stop asking for help, try the places I have suggested and nothing comes back let me know.

 

I am sure others here will try and support you and listen.

 

JsMum

[UltraMum]

Sam - you are in the right place because we do care

 

<'> <'> <'>

 

There are some excellent suggestions above - take your time and follow them up when you feel strong enough

 

There are some excellent pointers on DLA in this forum - at the top of the following page http://www.asd-forum.org.uk/forum/index.php?showforum=4

 

Please feel free to vent your feelings here and get some free advice and some virtual hugs

 

<'> <'> <'> <'> <'> <'> <'> <'> <'>

[Karen A]

Hi Sam sorry you are having a rough time.As others have said there are people here who care about you and your child.It can be very lonely and isolating having a child with difficulties many of us have experienced this.I think it can be worse now-I find that because Ben is in a mainstream school I have less in common with other mums with NT children.Being part of a support group does help.I only have one idea to add to what others have said.If swimming in the big pool is very stressful you could insist your son returns to the small pool.Speak to his teacher or take it to HT.I had a different problem with swimming last year.As Ben enjoyed swimming with us I said that if it was going to be a difficult experience having school lessons I would withdraw him.I know it is only a small part of the situation you are in. But if you can change one thing to start with it sometimes helps with feeling a bit more in control. <'> <'> <'> Karen

[Suze]

hi Sam <'> big hugs to you.I would go in and have a chat with school, re the swimming , I took my boy out of swimming as he found it so so stressful and hated it so much.Finding a support group is an excellent idea .Does your area have an Autism support /development team that can be invited in by the school to advise on stratergies to help your son?...........Ours proved invaluble when my son had problems.I would also keep a diary of problems you have and tings your boy finds difficult.You can use this as evidence for the DLA and assessment if you push for a statement for your son.All the best Suzex

[Valiant_Skylark]

Hope you had a better day today, Sam. <'> <'> <'> <'>

VS xx

[sam1414]

thankyou all for your words of advice and just to know that someone cares was lovley .r did not go swimming that day had to keep him at home im goin to look at another school next week fingers crossed i know it will be hard for r but he can t go on like this . i have took a week of work sarting sunday so im goin to see what i can do in a week to kick someones ###### !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!in to listening .hopefull his night meds are changing back to normal so we both can get some sleep .bad news on the dla they said my appeal was to late !!!!!!!!!!!!!!!!!! so im back to form filling . on the down side my neighbour is complaining about r behavoiuior affecting her son ,my mum can t cope with r for much longer when im at work .my so called friend said to reece in front of everyone i know u arent normal but i won t have you behaving that way in my house .i could not believe what i was hearing ,my reply was he is normal just special .people are so cruel ,she is my closet friend the one i thought understood thankyou all so much i will let u know what happens in my week off

[Kathryn]

Hi Sam,

 

A week off work sounds great, I hope it gives you the space you need to think through what to do, and also a bit of a respite from the pressure.

 

Good luck next week, I hope you manage to make some progress on the education front, however small.

 

K x

[Flora]

Sam <'>

 

Reading your post it struck me that it's exactly one I could have written when Bill was the same age as your son. He was newly dx, I was turned down for DLA, the school didn't seem to do anything different. Eventually I poured this out to his consultant who contacted the school he was in at the time and organised a meeting. Things changed.

 

Then we relocated and I was struggling again but then found this forum which has been an absolute saviour. I learned how to fight constructively for my son's right to an education and support. I learned that the things we needed were things he was entitled to. Through this forum I gleaned the knowledge to enpower me to get some of the things my son is entitled to.

 

The only thing I'll say to you is... Don't give up.

 

You've been turned down for DLA? Reapply, but arm yourself with information, advice and knowledge on how to fill in the forms ( all the information is here on the forum, but if you can't find it then you only need to ask).

 

You can't get the school to listen? Ask for specific advice on the issues which are bothering you, and again arm yourself with the knowledge to make them listen.

 

Please don't think I'm being trite. None of this is easy, but your son has a right to understanding and you are his voice. Everyone here is behind you every step of the way.

 

Be strong hun and don't hesitate to ask for specific advice for all of the difficulties you are encountering. It's a lonely old world for us struggling, and can feel very isolated, but you trully are not alone <'>

 

Flora X