Independent Schooling

Hi, my 12 year old, Year 8 son, a recently diagnosed Aspie, doesn't, and never has, wanted to go to school. All through primary years I was told he was fine once I had gone and that it was behavioural problems. We sought assessment through CAMHS and after five years got the diagnosis last October. He is at an independent school, who do not have any other ASD pupils (?). Had we had an earlier diagnosis we probably wouldn't have sent him to this school, however, he is there (well, sometimes).

My point at the moment is, I'm worn out, depressed, sad, feel totally useless to the rest of the family, have no life of my own, and feel of very little use to anyone, let alone him.

Everyone said once we knew then there would be lots of support and help and it would all get easier, but I don't see it. My hubby and I are on the Autism Parent Training course at the mo, run by the IDS and maybe this has had a huge dawning effect of me, "he's not like the children of the other parents on the course", but he is!. I don't know any other aspies, I just still feel really alone.

The lady from IDS on the course has said she would come and visit us and maybe talk about going into school (which they shouldn't really do because Independents don't buy into the County IDS service) I'm so frustrated! We pay our taxes and NI and yet everything has to be so "cloak and dagger". School say they are willing to help but ask me what I want them to do, and I really don't know, I thought they were the professionals Son is very bright, not easily motivated, but can achieve A and B grades without being there half the time, so he doesn't need extra tuition. He's always been very good in school, the model student, all the teachers love him, wish they saw more of him. The problem is when he gets up in the morning, I don't know whether he's willing to go or not. I'm done with the physical fight to get him there, I don't have the energy to go through all that again, and probably couldn't anyway as he is as big as me now!

Feel like I've waffled, but had a bad day!

P.S. I really don't want him to change schools, it might just carry on, and better the devil you know!

Bye for now.

Parents

Frankie99 over 14 years ago

Annie, reading this makes me feel so sad because as parents of a 9 year old with Aspergers who is at an independent school we have been through all that you talk about (refusal to go to school, county autism team refusing to help, considering whether to confront the nightmare situation of moving to another school which can get the support etc). And the feelings of being abandoned and left on your own to deal with it. In our case we chose an independent school in the first place because we knew our son, undiagnosed at that stage, could not cope with large class sizes. Once the problems started with school we felt completely abandoned by "the system".
Last year things reached such a difficult point with the school that we gave notice and applied for a place in a state school. In the end, his school persuaded us that they did want to keep him and that they would make the necessary adjustments to make the situation tolerable for our son, us and the school. They have stuck to their word on this. It's still not perfect as, while the school want to do the right thing, they don't always know what that is. But they are trying.
The advice I would give you is to keep talking to the school. The school need to understand about the condition - and on the positive side, a teacher spoke to me today to say that this particular independent school is seeing more and more cases of autism/aspergers so it is in the school's interest to take this on board so they can support other children in the future. Encourage them to see that time spent understanding your child is an investment for their future. Small changes at school can make an enormous difference - equally some changes might not work at all but some things will help. Another avenue might be to try to gain funding from Social Services that could be used to buy in specialist support for the school. We are going down this route at the moment by using our budget for support at home to buy in expert help. Our "expert" has autism so knows what she is talking about. And one of the most positive statements she made to me was that she dreaded to think how my son would cope in a state school which came as a huge relief as I was blaming myself for the decision we took 5 years ago.
Are Social Services providing you with enough support? If not, write to your MP. Unfortunately I've found that's the only way to get them to do something and it has worked. Not all the help has been of much use but some (eg our expert) has and having that extra support is vital so you don't feel alone.
I do hope you get the support you and your son deserve.

Reply

Frankie99 over 14 years ago

Annie, reading this makes me feel so sad because as parents of a 9 year old with Aspergers who is at an independent school we have been through all that you talk about (refusal to go to school, county autism team refusing to help, considering whether to confront the nightmare situation of moving to another school which can get the support etc). And the feelings of being abandoned and left on your own to deal with it. In our case we chose an independent school in the first place because we knew our son, undiagnosed at that stage, could not cope with large class sizes. Once the problems started with school we felt completely abandoned by "the system".
Last year things reached such a difficult point with the school that we gave notice and applied for a place in a state school. In the end, his school persuaded us that they did want to keep him and that they would make the necessary adjustments to make the situation tolerable for our son, us and the school. They have stuck to their word on this. It's still not perfect as, while the school want to do the right thing, they don't always know what that is. But they are trying.
The advice I would give you is to keep talking to the school. The school need to understand about the condition - and on the positive side, a teacher spoke to me today to say that this particular independent school is seeing more and more cases of autism/aspergers so it is in the school's interest to take this on board so they can support other children in the future. Encourage them to see that time spent understanding your child is an investment for their future. Small changes at school can make an enormous difference - equally some changes might not work at all but some things will help. Another avenue might be to try to gain funding from Social Services that could be used to buy in specialist support for the school. We are going down this route at the moment by using our budget for support at home to buy in expert help. Our "expert" has autism so knows what she is talking about. And one of the most positive statements she made to me was that she dreaded to think how my son would cope in a state school which came as a huge relief as I was blaming myself for the decision we took 5 years ago.
Are Social Services providing you with enough support? If not, write to your MP. Unfortunately I've found that's the only way to get them to do something and it has worked. Not all the help has been of much use but some (eg our expert) has and having that extra support is vital so you don't feel alone.
I do hope you get the support you and your son deserve.

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