family stuff
Jan. 28th, 2008 09:07 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
llywelaMum had a meeting at the school today, with the doctor attached to the school, the Senco, Small's teacher and support assistant, and I'm not sure who else. Basically, they all agree that she has some form of autism. Well, we've suspected that for a long time now - you don't have to be an expert to see that she has some very autistic tendencies, which are getting worse and worse as she gets older. 'Semantic pragmatic' was the phrase being bandied around while she was tested for her statementing. So why has it taken 11 years for anyone official to say the word 'autism'? They didn't want to say it today, going off on that tired old tangent of not wanting to 'label' her. Apparently, being labelled as autistic could hamper her employment prospects down the line. Well, as a family, we tend to think that leaving school with no qualifications because her special educational needs weren't met would hamper her employment prospects rather more. We're all for labelling - a clear and confirmed diagnosis means treatment targeted to her specific needs, which is what she has needed for years now.
Trouble is, getting that diagnosis could take another year, even now that the ball is rolling. Why does it take so damn long to get anything done? Why has it taken so long to get this far? Everyone involved with her in secondary school has expressed amazement that the severity of her needs weren't picked up a lot earlier. But on the other hand, they all say that they can see why. She does score highly in some areas. But she scores incredibly low in most areas. Trouble is, those few peaks that she manages distort the rest of her testing, and disqualify her for a lot of the help she needs, which is the trouble with the IQ testing she's had. There are children in special schools who aren't as bad as her, but she wouldn't qualify because she does get these peaks. Such a stupid system. Instead of being something to celebrate, the fact that she does have some things she is good at becomes a reason for her to lose out on the support she needs.
Plas Mawr have won awards for their special needs department - they are one of the best schools in the country in that regard. Apparently, Small has the most complicated range of needs they've had at the school. And they are brilliant with her. In what other secondary school would a teacher play hide-and-seek with an eleven-year-old, or give up a lunch hour to play basketball with her? Since she started there, they say they've had to completely re-draw the action plan they had set up for her, once they realised the extent of her needs and just how young she is in her head. It's that emotional immaturity that is her biggest problem, the social skills, more than the learning disability, although she is never going to be academic. The school are already giving her a lot more support than is specified on her statement, so they want this diagnosis for her so they can access the funds to pay for the support plan that she needs. It's just that the process is so, so damn slow.
Evidently, bereavement counselling is the one service that could be accessed very swiftly for her. I guess bereavement tends to be something immediate, whereas special educational needs are always present, so they can take their time with those. Except that the longer the process takes, the more the child misses out on valuable weeks, months and years of their education that they can never get back. The bereavement counselling was turned down. She isn't ready for anything like that. Just the mention of her mother's name and she shuts down completely, gets very angry. Trying to force the issue wouldn't help; better to let it lie and let her deal with it in her own time.
So, anyway, that's the state of play. Small herself is happy at the school, apart from her difficulty adapting to having a one-on-one support assistant, which she has never had before. No child likes to be singled out as different. The assistant actually has a few children in the class that she supports, but most of her time is devoted to Small, who is the neediest. She does have trouble hanging on to her friends, mostly because her obsessive compulsive behaviour is difficult even for an adult to deal with, never mind a bunch of pre-teens.
But she was on cloud nine last week when she made the netball team. She's had so many people trying to talk her into trying out for that, ever since September, but she always refused. Last year, in primary school, she was the best player on the team and on the verge of being made captain. But then she had a chest infection and was off school for three weeks, and went back to find the team had been selected and settled on without her. The child who had been made captain in her stead told her she wasn't allowed to attend practice any more - not true - and she was so upset she refused to ever go back to netball. And it is the one thing she is really, really good at: ball sports. With so much else being difficult for her, she's channeled everything into that one thing she is good at, which is playing with balls: football, netball, basketball. Anything like that. So, after having numerous teachers, and us, working on her for months now, she has finally tried out for the team at Plas Mawr, and made it. Thank goodness for that.
She's having less of a good week this week. It's the time of the month, and that always hits her hard - the hormones send her sky high, she's incredibly heavy for an eleven-year-old, and just doesn't have the maturity to deal with any of it, either the emotional aspect or the practical. The school nurse thinks she might have endometriosis. The paediatrician thinks more likely fibroids. Either way, she is too young to be treated for it, so just has to endure. She also has a heavy cold at the moment. So do I, for that matter - the one I shook off last week did a u-turn and came back with a friend! And at our Sunday School party on Saturday, Small banged heads with one of the boys - the back of his head hit her nose, unfortunately in the same spot where she had a nasty blow from her birth father when she was 16 weeks old. So she already has a weakness there, plus she has a deviated septum. Result: a very nasty nose bleed, and a lot of bruising and swelling, which is still sore now. We don't think it's broken, but it was nasty enough anyway.
Hopefully that'll be the end of the drama for this week!
Anyway, that's the end of my rant. Sorry for going on and on so much. Just needed to get it all down.
Trouble is, getting that diagnosis could take another year, even now that the ball is rolling. Why does it take so damn long to get anything done? Why has it taken so long to get this far? Everyone involved with her in secondary school has expressed amazement that the severity of her needs weren't picked up a lot earlier. But on the other hand, they all say that they can see why. She does score highly in some areas. But she scores incredibly low in most areas. Trouble is, those few peaks that she manages distort the rest of her testing, and disqualify her for a lot of the help she needs, which is the trouble with the IQ testing she's had. There are children in special schools who aren't as bad as her, but she wouldn't qualify because she does get these peaks. Such a stupid system. Instead of being something to celebrate, the fact that she does have some things she is good at becomes a reason for her to lose out on the support she needs.
Plas Mawr have won awards for their special needs department - they are one of the best schools in the country in that regard. Apparently, Small has the most complicated range of needs they've had at the school. And they are brilliant with her. In what other secondary school would a teacher play hide-and-seek with an eleven-year-old, or give up a lunch hour to play basketball with her? Since she started there, they say they've had to completely re-draw the action plan they had set up for her, once they realised the extent of her needs and just how young she is in her head. It's that emotional immaturity that is her biggest problem, the social skills, more than the learning disability, although she is never going to be academic. The school are already giving her a lot more support than is specified on her statement, so they want this diagnosis for her so they can access the funds to pay for the support plan that she needs. It's just that the process is so, so damn slow.
Evidently, bereavement counselling is the one service that could be accessed very swiftly for her. I guess bereavement tends to be something immediate, whereas special educational needs are always present, so they can take their time with those. Except that the longer the process takes, the more the child misses out on valuable weeks, months and years of their education that they can never get back. The bereavement counselling was turned down. She isn't ready for anything like that. Just the mention of her mother's name and she shuts down completely, gets very angry. Trying to force the issue wouldn't help; better to let it lie and let her deal with it in her own time.
So, anyway, that's the state of play. Small herself is happy at the school, apart from her difficulty adapting to having a one-on-one support assistant, which she has never had before. No child likes to be singled out as different. The assistant actually has a few children in the class that she supports, but most of her time is devoted to Small, who is the neediest. She does have trouble hanging on to her friends, mostly because her obsessive compulsive behaviour is difficult even for an adult to deal with, never mind a bunch of pre-teens.
But she was on cloud nine last week when she made the netball team. She's had so many people trying to talk her into trying out for that, ever since September, but she always refused. Last year, in primary school, she was the best player on the team and on the verge of being made captain. But then she had a chest infection and was off school for three weeks, and went back to find the team had been selected and settled on without her. The child who had been made captain in her stead told her she wasn't allowed to attend practice any more - not true - and she was so upset she refused to ever go back to netball. And it is the one thing she is really, really good at: ball sports. With so much else being difficult for her, she's channeled everything into that one thing she is good at, which is playing with balls: football, netball, basketball. Anything like that. So, after having numerous teachers, and us, working on her for months now, she has finally tried out for the team at Plas Mawr, and made it. Thank goodness for that.
She's having less of a good week this week. It's the time of the month, and that always hits her hard - the hormones send her sky high, she's incredibly heavy for an eleven-year-old, and just doesn't have the maturity to deal with any of it, either the emotional aspect or the practical. The school nurse thinks she might have endometriosis. The paediatrician thinks more likely fibroids. Either way, she is too young to be treated for it, so just has to endure. She also has a heavy cold at the moment. So do I, for that matter - the one I shook off last week did a u-turn and came back with a friend! And at our Sunday School party on Saturday, Small banged heads with one of the boys - the back of his head hit her nose, unfortunately in the same spot where she had a nasty blow from her birth father when she was 16 weeks old. So she already has a weakness there, plus she has a deviated septum. Result: a very nasty nose bleed, and a lot of bruising and swelling, which is still sore now. We don't think it's broken, but it was nasty enough anyway.
Hopefully that'll be the end of the drama for this week!
Anyway, that's the end of my rant. Sorry for going on and on so much. Just needed to get it all down.
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no subject
Date: 2008-01-30 08:29 pm (UTC)Hopefully things start to look up for her soon.
no subject
Date: 2008-01-31 07:14 am (UTC)