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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

  • Dear Aspie Angel

    What stands out for me here is when you wrote this:

    "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."

    If that is happening then whilst your son may appear on the outside to be coping, as Longman points out, what is going on under the surface is clearly a very different matter.  My advice would be to bring up the mental health concerns with the school - these are very serious and if not nipped in the bud could lead to greater problems later on (my son was of a similar autism profile at a similar age).  I would do this in writing and ask that your son be put at School Action, which is one of the steps before a statement of special educational needs.

    At the very least, he needs an Individual Education Plan to set out the social and emotional gaps in his development and to identify what provision can be put in place to meet his needs. 

    Personally, I havent found anything within school settings that works on social and emotional development in a meaningful way.  All thats ever been offered at school as far as I can see are interventions which merely scratch the surface and do not really go to the heart of our children's problems - problems with rigid thinking, episodic memory (which is at the root of the development of resilience - our kids lack the ability to 'bounce back' from a setback which contributed to your son's difficulties when the balloon escaped), problems with emotional regulation (where the challenge of losing the balloon was just too much for him to manage) and difficulties understanding other people and the world.

    If your son is self harming, depressed and having suicidal thoughts, he may benefit work on episodic memory and emotional regulation....this certainly helped in our case. 

    Here is a link to me discussing what has helped our son improve his episodic memory (and therefore, his resilience) and his emotional regulation:

    http://notnigellanotjamie.blogspot.com/2011/01/memories-of-competence.html

    I think you have got a fight on your hands - its much harder to fight for provision for children at the so-called 'higher functioning' end of the spectrum, because their IQ and verbal ability often overshadows and masks the very serious problems with social interaction and social understanding which can go on to have a dramatic effect on mental health (its all there in the research literature).

    But it is possible to get the right provision if you get the right information and the right help and support. 

    Best of luck

    Zoe

Reply

  • Dear Aspie Angel

    What stands out for me here is when you wrote this:

    "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."

    If that is happening then whilst your son may appear on the outside to be coping, as Longman points out, what is going on under the surface is clearly a very different matter.  My advice would be to bring up the mental health concerns with the school - these are very serious and if not nipped in the bud could lead to greater problems later on (my son was of a similar autism profile at a similar age).  I would do this in writing and ask that your son be put at School Action, which is one of the steps before a statement of special educational needs.

    At the very least, he needs an Individual Education Plan to set out the social and emotional gaps in his development and to identify what provision can be put in place to meet his needs. 

    Personally, I havent found anything within school settings that works on social and emotional development in a meaningful way.  All thats ever been offered at school as far as I can see are interventions which merely scratch the surface and do not really go to the heart of our children's problems - problems with rigid thinking, episodic memory (which is at the root of the development of resilience - our kids lack the ability to 'bounce back' from a setback which contributed to your son's difficulties when the balloon escaped), problems with emotional regulation (where the challenge of losing the balloon was just too much for him to manage) and difficulties understanding other people and the world.

    If your son is self harming, depressed and having suicidal thoughts, he may benefit work on episodic memory and emotional regulation....this certainly helped in our case. 

    Here is a link to me discussing what has helped our son improve his episodic memory (and therefore, his resilience) and his emotional regulation:

    http://notnigellanotjamie.blogspot.com/2011/01/memories-of-competence.html

    I think you have got a fight on your hands - its much harder to fight for provision for children at the so-called 'higher functioning' end of the spectrum, because their IQ and verbal ability often overshadows and masks the very serious problems with social interaction and social understanding which can go on to have a dramatic effect on mental health (its all there in the research literature).

    But it is possible to get the right provision if you get the right information and the right help and support. 

    Best of luck

    Zoe

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