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Where do I start to help my kids?

Aspie Angel

I'm the mum of a six year old boy diagnosed with asperger syndrome, and a three year old boy who is in the process of diagnosis. My older boy was diagnosed three years ago, so I feel like I should be quite knowledgable with all the support networks, but I have large gripes about my kids at the moment, and find myself not having a clue where to get help!

My six year old is very bright, and has (with much family support) learnt to cope with daily life, and manages at a mainstream school quite well. I find, that because of this, many support doors are slammed shut in his face, and he gets no help whatsoever.

When we raise serious concerns with the school, they just say that they are impressed with how he copes. At his school they have a lunch hour of 1 1/2 hours which my son finds quite challenging. We have asked for support, but don't get it. We even resorted to offering to pay a lunch time supervisors wage but the school said they weren't allowed to do that!

Who can help my child?

More to the point, who will help my child?

I feel totally helpless and feel the only option left to me is to bring him home at lunch time. I don't want to do this, as it would leave me totally tied during the day. Also, my son has the will to form friendships, he just needs a bit help. If i take him out of school at lunch time, those social opportunities will be lost and he'll never learn!

How can I find out what my children should be getting?

My three year old was assessed last week and it was reported that he didn't interact at all with any of the children. Because he is also bright, chances are he'll get no help either. I asked the Outreach team how he could be helped to learn social skills, and they went on and on about the imput they give to secondary school children! He hasn't started primary school yet! How can I sit back and let my child be a bystander through his entire primary schooling, before any social input!

I feel so helpless as their main problems are social, and the main opportunities to learn social skills, are when they are out of my care.

Parents

  • Thank you Francesca,

    It's great to know that when you feel so helpless and lacking in knowledge, you can come to this website to get help.

    All I want is to know how my kids can be helped, even if it means me doing it all myself, if lack of funding for resources is the problem!

    I read books about parents who have tried this, or that, and I think to myself how much improved my childrens' conditions would be if someone would just spend a little directed time with them. Do I fight for it, or just sit back and watch the school and the outreach team neglect their responsibilites? To me, there is no choice!

    A part of me also feels guilty for wanting resources for my children when they do cope quite well, and we are so lucky because we could have it so much worse. But I feel the whole system is letting kids with asperger syndrome down as often they are too good for their own good! People shouldn't forget that those kids often are suffering more. I had my six year old referred to a psychiatrist on the 2nd January this year as he was depressed, had started self harming, and had suicidal thoughts. He still hasn't been seen by CAMHS yet. What more can I say? His pead consultant was not concerned in the slightest bit, saying that a lot of ASD kids have these thoughts. So does that make it ok then?!! So i just have to accept that my six year old is so sad he wants to throw himself under a car, because that's normal?! It's not good enough.

    Rant over!

Reply

  • Thank you Francesca,

    It's great to know that when you feel so helpless and lacking in knowledge, you can come to this website to get help.

    All I want is to know how my kids can be helped, even if it means me doing it all myself, if lack of funding for resources is the problem!

    I read books about parents who have tried this, or that, and I think to myself how much improved my childrens' conditions would be if someone would just spend a little directed time with them. Do I fight for it, or just sit back and watch the school and the outreach team neglect their responsibilites? To me, there is no choice!

    A part of me also feels guilty for wanting resources for my children when they do cope quite well, and we are so lucky because we could have it so much worse. But I feel the whole system is letting kids with asperger syndrome down as often they are too good for their own good! People shouldn't forget that those kids often are suffering more. I had my six year old referred to a psychiatrist on the 2nd January this year as he was depressed, had started self harming, and had suicidal thoughts. He still hasn't been seen by CAMHS yet. What more can I say? His pead consultant was not concerned in the slightest bit, saying that a lot of ASD kids have these thoughts. So does that make it ok then?!! So i just have to accept that my six year old is so sad he wants to throw himself under a car, because that's normal?! It's not good enough.

    Rant over!

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