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.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2008-01-28 10:00 pm (UTC)It's a pity for her she started her periods so early. It's hard for most kids but with other difficulties too it must make it doubly hard for her.
Congrats to her for making the netball team. :)
no subject
Date: 2008-01-28 10:11 pm (UTC)It's hard for most kids but with other difficulties too it must make it doubly hard for her.
It's really hard to explain just how badly she copes with the practicalities. This is a child who has lost three coats and two PE kits since September! There's that enormous degree of carelessness on top of the emotional immaturity - it's like a child of six or seven trying to deal with blood and pads and all the rest of it. Nightmare.
But yeah, she's delighted about the netball team, and so are we. And this team of professionals all said that getting the dog was the best thing for her - she adores her Ruby.
no subject
Date: 2008-01-28 10:14 pm (UTC)Don't apologise you have every right to get it all out on here. Sorry it's taken so long to get it looked into and will take a lot longer to get a diagnoses. Guess they probably want to make sure :/
It's a shame she misses out on the support she needs just because she scores highly in some areas.
no subject
Date: 2008-01-29 10:16 am (UTC)no subject
Date: 2008-01-28 10:40 pm (UTC)no subject
Date: 2008-01-29 10:21 am (UTC)She can be an incredibly challenging child to look after. She can also be incredibly sweet and loving. Makes life interesting, always...
no subject
Date: 2008-01-28 11:04 pm (UTC)and congratulations to small for making the netball team.
Sending Dr Doyle to look after you :) (pretend Dr Kingsford is Dr Doyle, ok)
no subject
Date: 2008-01-29 10:23 am (UTC)I have no voice today. Is just gone.
Small was so happy about the netball, you'd never know she'd spent the last four months refusing to try for it...
no subject
Date: 2008-01-29 07:59 pm (UTC)no subject
Date: 2008-01-29 01:54 am (UTC)I get so cross reading about how your family struggle to get the help Small needs, and how she is actually further disadvantaged by the political correctness of not wanting to "label" her. It sounds as though she is in a wonderful school, though where they really think and care about her.
Don't feel bad about the need to rant, I think you're remarkably restrained. Rant away, just sorry we can't do anything but offer moral support.
no subject
Date: 2008-01-29 10:38 am (UTC)no subject
Date: 2008-01-29 02:24 am (UTC)Secondly, congrats to Small for overcoming her earlier rejection for the basketball team, and trying out and making it to the team at her new school. It is great that she is good at sports.
It is a shame that a lot of her special needs are still not being addressed but it sounds as if her school is very good and something might comeof this latest assessment at long last.
no subject
Date: 2008-01-29 11:29 am (UTC)Small has always been good at ball sports - since she was tiny, it's been impossible to come out of a shop without a ball. It's good that she has something she is good at, as she struggles so badly elsewhere. This school is very good, but it would be nice if all the red tape could be cut through sooner rather than later!
no subject
Date: 2008-01-29 04:29 am (UTC)Quite agree about the 'labelling' probs- in this day and age nobody wants to make a wrong move, but I'm very much in the 'call a spade a spade' camp.
And! Super good that she's on the netball team! Tell her 'congrats!'
no subject
Date: 2008-01-29 11:32 am (UTC)This stupid political correctness of not wanting to 'label' children is so damaging. Everyone is labelled, whether openly or not. We look at someone and instantly form an opinion: pretty, ugly, sporty, geeky, etc. At least an official medical diagnosis of a learning disability is useful!
People are mad. And systems are crazy.
no subject
Date: 2008-01-29 05:38 am (UTC)A few things . . .
LOUDER THAN WORDS: A MOTHER’S JOURNEY IN HEALING AUTISM by Jenny McCarthy is a very informative book. Don't be strayed by her Hollywood career, Jenny McCarthy is admirable for how she has responded to her son's needs.
I've read of alternative diet treatments to lessen the symptoms of autism. Some of them include limiting intake of dairy, eating only gluten-free foods and yeast free diets. I'm sorry that I don't have any specific websites or books to cite for you but I thought I'd pass that knowledge on to you.
Don't just wait for a diagnosis. Read up on therapies and treatments you can do at home. The most important thing in her life right now is that you and the rest of your family are so supportive of her. God bless you and Small and the rest of your family. Stay strong.
no subject
Date: 2008-01-29 11:37 am (UTC)The alternative diet treatment is something I'd heard of before, so is probably worth looking into further. She's a good eater, though - loves her vegetables and proper cooked dinners, rather than junk food anyday, which is a good thing.
Thanks for your support :)
no subject
Date: 2008-01-29 01:09 pm (UTC)The school does sound good tho! :) And yay for netball.
no subject
Date: 2008-01-29 01:19 pm (UTC)Yay for netball indeed. Since she was tiny it has been impossible to come out of a toyshop without a ball of some kind. It seems all that investment does actually pay off...
no subject
Date: 2008-01-29 06:54 pm (UTC)no subject
Date: 2008-01-31 07:12 am (UTC)no subject
Date: 2008-01-29 09:57 pm (UTC)no subject
Date: 2008-01-29 11:34 pm (UTC)It's great news that she has got into the netball team. :D
no subject
Date: 2008-01-31 07:13 am (UTC)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)