Aspergers/ASD support thread

Mandles

I have just been through the exact same. I wanted an assessment for help but not a diagnosis as did not want a label as it would change everything. Anyway, this does not exist so i got diagnosis and was a bit tearful at first(still in a bit of denial if i am honest). But it is a really good positive thing to . I now know exactly what i can expect from him and can see what is his autism and what is naughty and how to deal with him in a way that is best for him.

Teachers will also know how to deal with him better if they have that "label ". And you also may get disability payments even with aspergers which you can use to make your garden secure or for babysitters to give you some respite etc.You can also get a statement for him which will give him more help in school (and no one needs to know if you dont want them to so the other kids wont talk).Also whatever school that you chose for your child they HAVE to take him(i like that one, he is set to go to the best school in my area).

I didn't want a diagnosis but am very pleased that i did get one now. Wishing you all the best.

Savvy_Sue

Mandles wrote: »

And you also may get disability payments even with aspergers which you can use to make your garden secure or for babysitters to give you some respite etc.

I don't want anyone to get their hopes up, DLA would be awarded for the NEED, the label would have nothing to do with it. The label may help with assessing and identifying the NEED, just as it MAY help with a Statement of Educational Needs, but it is the NEED not the label which matters.

Even now my eldest is at University, he has been able to get a mentor paid for with a disabled students grant with a diagnosis which seems to say "fragments of Asperger's". He never had any help all through school, apart from a mad panic to get him extra time for his GCSEs, because he didn't need any help.

The point is, a NEED has been identified (for someone to regularly kick him up the posterior, as far as I can see!) and therefore it is being met.

If you do apply for DLA - and with a child whose needs mean that s/he requires more attention than would be expected for a child of that age please go for it! - it's no use just saying they have Asperger's or they are on the autistic spectrum. You have to outline in detail what that means for you as a family. With or without a diagnosis, that's what counts.

Mandles wrote: »

Also whatever school that you chose for your child they HAVE to take him(i like that one, he is set to go to the best school in my area).

Again, I don't think anyone should get their hopes up with this one.

AFAIK, if a child has a SEN, then that Statement MAY say which school he should go to, and the parent's wishes may be reflected in that Statement. However, it is equally possible that the LEA may try to avoid naming a particular school in the Statement, and just list the child's needs and how they will be met. Or, they may try to name a school of THEIR choice, even if the parent believes their child's needs cannot be met there, or that a different school would be better.

If no school or a school not of the parent's choosing is named in the statement, a parent cannot insist on the child attending a particular school, unless they can demonstrate that no nearer (or cheaper - let's be honest about the LEA's likely agenda here!) school will be able to meet the child's needs, as identified on the statement.

This is something it's worth being aware of at your child's annual review, and pushing for a particular school to be named if that matters to you. That may be what Mandles has been able to do, but it's by no means automatic, and some LEAs are very poor at listening to parents.

Also keep an eye out for transport provision: if it was essential one year, make sure it's not quietly dropped the following year, or at any change of school, especially transition to secondary! While most children may be expected to make their own way to school at the age of 11, a child who STILL has no road sense may need to be taken by taxi.

Mandles

Savvy_Sue wrote: »

I don't want anyone to get their hopes up, DLA would be awarded for the NEED, the label would have nothing to do with it. The label may help with assessing and identifying the NEED, just as it MAY help with a Statement of Educational Needs, but it is the NEED not the label which matters.

Even now my eldest is at University, he has been able to get a mentor paid for with a disabled students grant with a diagnosis which seems to say "fragments of Asperger's". He never had any help all through school, apart from a mad panic to get him extra time for his GCSEs, because he didn't need any help.

The point is, a NEED has been identified (for someone to regularly kick him up the posterior, as far as I can see!) and therefore it is being met.

If you do apply for DLA - and with a child whose needs mean that s/he requires more attention than would be expected for a child of that age please go for it! - it's no use just saying they have Asperger's or they are on the autistic spectrum. You have to outline in detail what that means for you as a family. With or without a diagnosis, that's what counts.

Again, I don't think anyone should get their hopes up with this one.

AFAIK, if a child has a SEN, then that Statement MAY say which school he should go to, and the parent's wishes may be reflected in that Statement. However, it is equally possible that the LEA may try to avoid naming a particular school in the Statement, and just list the child's needs and how they will be met. Or, they may try to name a school of THEIR choice, even if the parent believes their child's needs cannot be met there, or that a different school would be better.

If no school or a school not of the parent's choosing is named in the statement, a parent cannot insist on the child attending a particular school, unless they can demonstrate that no nearer (or cheaper - let's be honest about the LEA's likely agenda here!) school will be able to meet the child's needs, as identified on the statement.

This is something it's worth being aware of at your child's annual review, and pushing for a particular school to be named if that matters to you. That may be what Mandles has been able to do, but it's by no means automatic, and some LEAs are very poor at listening to parents.

Also keep an eye out for transport provision: if it was essential one year, make sure it's not quietly dropped the following year, or at any change of school, especially transition to secondary! While most children may be expected to make their own way to school at the age of 11, a child who STILL has no road sense may need to be taken by taxi.

Sorry,dont mean to get any hopes up without reason. As i say, i am new to all this and you cannot leave my son alone and unsupervised for 1 minute(i did yesterday and found him at the top of the stairs on his tricycle about to drive down the stairs!! and that is everyday with him. So i thought all aspergers have the need for constant supervision(are they not all like that?)

And sorry about the school . They are so very strong about it. The first team, speech and language and educational pshycologist have all been very definate in telling me that i can choose any school i want for him if i get the statement which they all say he will definately get. They said the school HAVE to have him if i choose that particular school.Maybe i am just living in a very good area as regards autism/aspergers.

Strapped

Mandles wrote: »

And sorry about the school . They are so very strong about it. The first team, speech and language and educational pshycologist have all been very definate in telling me that i can choose any school i want for him if i get the statement which they all say he will definately get. They said the school HAVE to have him if i choose that particular school.Maybe i am just living in a very good area as regards autism/aspergers.

We found that the LEA automatically named the school that he is at, even though they knew that we had previously requested a move (next nearest school has specialist SEN provision). The LEA's view was that he had a place at our nearest school & they were not obliged to offer him anywhere else (even if that would be a better school for him). Interestingly, I don't think that the current school Head really wants DS there, as he told me last week (in response to a supposedly anonymous parents questionaire) "if you feel that negatively about the school, there are other schools in the area that you could send him to"! :mad:

Edit: of course, if he went to the other school, the LEA would have to pay for transport...

shazrobo

my son had his annual review earlier this week, there are two special schools in the area, but was told he couldnt go to one of them as he is too bright. the other one is much closer to home, and i was worried about transport, as he can not be left unsupervised to walk alone. even though it is only five mins away they have agreed to transport again, which i am so relieved about. i would take him myself, but i have another son, at another special school, who is picked up by mini bus, and i need to see him on too, as he also cannot be left alone, and both lads turn 14 in april.
also on the subject of his review, we discussed future exams, gcse's, and they said he will do well, but as he has problems with fine motor skills, and handwriting, he will be able to have a scribe, who will write all his answers as he tells them to. for a change, the future is looking good for my sons

shaz x

Savvy_Sue

Mandles wrote: »

Sorry,dont mean to get any hopes up without reason. As i say, i am new to all this and you cannot leave my son alone and unsupervised for 1 minute(i did yesterday and found him at the top of the stairs on his tricycle about to drive down the stairs!! and that is everyday with him. So i thought all aspergers have the need for constant supervision(are they not all like that?)

Nope, they're all different! :rotfl:

In fact DS1 used to be hyper-cautious: as his nursery said to me (before I knew what the difference was!), some children would race to the top of the climbing frame and THEN realise they didn't know how to get down. DS1 didn't go any further up than he knew he could get down from. He made it to the top in the end, but he never ever got stuck.

Mandles wrote: »

And sorry about the school . They are so very strong about it. The first team, speech and language and educational pshycologist have all been very definate in telling me that i can choose any school i want for him if i get the statement which they all say he will definately get. They said the school HAVE to have him if i choose that particular school.Maybe i am just living in a very good area as regards autism/aspergers.

It is true that once the school's name is on the statement, the school cannot refuse to take them, even if they don't feel they can meet the child's needs. That's another reason to make sure that at reviews, you get the 'right' school named. However, AFAIK you have no more 'right' to your first choice of school than any other parent.

Glad to hear that your son's review worked out OK, shaz. Actually your case gives me an example of why the parents can't just name a school and get it - the LEA considers that one of the special schools in your area isn't suitable because your son is 'too bright'. Now, imagine a situation where a parent is insisting that that's the school they want for their child but the LEA say the child is too bright, and therefore that school cannot meet that child's needs? That's why professional opinions are looked for, and as parents we should listen.

I'm not saying the LEA is always right, btw. You have only to look at the IPSEA website to see how disgracefully some of the behave ...

mousytrap

Hi all,

I haven't been on here for a few months but I've just been quickly catching up with what I've missed. Sounds like you all need high rate DLA to restock those bathroom supplies... Personally, if I can get any it'll be all for respite.

I've had a hell of a week with DS1, aged 6 and a half. To recap, he's been attacking teachers for a couple of years now. I am amazed they have put up with so much. When I was at school children like were expelled permanently...

Anyway, we've had him on the autism assessment queue for 9 months already. We have recently been told that it could take up to 11 more months before they *start* the assessment... and the queue since we joined is now 2.5-3 years long... If we lived 2-3 miles away in Southampton NHS area we'd be starting about now... I strongly suspect he's Aspie. He's very bright and shows many of the symptoms.

It all kicked off on 12 March when I went along on the school trip as a helper (for the first time). He chucked a mental about something and took off from the group, who were walking to another location. Teacher had to go back for him and they were gone some time. Turned out he'd kicked her (again... they *really* ought to get faster at getting out of the way) and the Head had turned up to sort things out. Luckily the trip was local. He seemed to be calming down but 30 mins or so later he started kicking and biting the Head. At this point he and I had to go back with her to the school and we were home by 11:30. I was told that it wasn't because I was there that he played up.

The next day he headed off to school and seemed OK but I got another call to go and get him because the violence had continued. This time he got his second exclusion, for a whole week.

I have spent the whole week practically imprisoned here with him, trying to get him to do some work from some workbooks from WHSmith. Sometimes he sat and did an hour or so but most of the time it was an uphill struggle. He's also been on a "porridge diet" 2 meals a day as part of his punishment so it's also involved keeping his face away from the fridge, etc. I'm knackered and I've put on weight from all the chocolate.

I thought he was going back to school this coming Tuesday (Monday being INSET) but got called to this meeting on Thursday. They're not having him back yet. He's going to be doing three mornings a week at the local behavioural centre place and two mornings a week at school after Easter. Because they haven't got a place for him until they ship someone else back to school, we have to take him there for an hour a day until the holidays. I take it that's so that the school gets out of taking him back. What a farce. Not enough time to get anything done but enough to muck up everyone's day.

Anyway, the behavioural centre say that he's likely to be there for quite some months while they assess him for the Statementing and determine whether he's going back to mainstream or find him an appropriate special school. His tour of the school he was due to start at in September has been put on hold since we don't know if he'll still be going there. He used to do after school football (when he was in the mood) so that's also down the gurgler.

He's clearly been upset and anxious about everything this weekend. I think he's understanding now how serious the situation has got but we're not all that convinced he's going to be able to improve. The only glimmer of hope is that he treats his Dad better than he treats me or his teachers, which suggests he has less respect for females. Certainly thinks he's a grown up and has little respect for authority in general.

They say that it will all be resolved within a year and he will be in appropriate education, but I think it's going to be a LONG year...

Meanwhile his younger brother is currently under the paediatrician, speech therapy, portage, occupational therapy and educational psychologist, all trying to catch his development up for school in September. He really, really looks forward to going. I'm trying to get him out of nappies still but we've having reasonable success (at the nursery end anyway). Just don't like the way he's picking up some behaviours from his brother, especially having IDIOT and SHUT UP bellowed at me all the time...

Sorry I've been waffling on but felt like I needed to vent a little to those that understand...

Oh, two more questions:
1 Paediatrician recommended Transporters DVD. Are any still available free from anywhere or do you just have to keep an eye on Ebay?
2 Do you really have to have a diagnosis before you can go on NAS parent courses or can you get on with proof you're on the assessment queue or something?

Ta
mousy

shazrobo

hi mousy, sorry cant help with your questions, but wanted to offer hugs
reading posts like yours makes me realise i wasnt the only one to have kids who attacked teachers etc.
both mine had statements, but only really received the help they needed when they where high school age, and both sent to special schools, which have been brill. hope you get things sorted a lot sooner than i did

shaz x

Strapped

mousytrap wrote: »

Hi all,

I haven't been on here for a few months but I've just been quickly catching up with what I've missed. Sounds like you all need high rate DLA to restock those bathroom supplies... Personally, if I can get any it'll be all for respite.

I've had a hell of a week with DS1, aged 6 and a half. To recap, he's been attacking teachers for a couple of years now. I am amazed they have put up with so much. When I was at school children like were expelled permanently...

Anyway, we've had him on the autism assessment queue for 9 months already. We have recently been told that it could take up to 11 more months before they *start* the assessment... and the queue since we joined is now 2.5-3 years long... If we lived 2-3 miles away in Southampton NHS area we'd be starting about now... I strongly suspect he's Aspie. He's very bright and shows many of the symptoms.

It all kicked off on 12 March when I went along on the school trip as a helper (for the first time). He chucked a mental about something and took off from the group, who were walking to another location. Teacher had to go back for him and they were gone some time. Turned out he'd kicked her (again... they *really* ought to get faster at getting out of the way) and the Head had turned up to sort things out. Luckily the trip was local. He seemed to be calming down but 30 mins or so later he started kicking and biting the Head. At this point he and I had to go back with her to the school and we were home by 11:30. I was told that it wasn't because I was there that he played up.

The next day he headed off to school and seemed OK but I got another call to go and get him because the violence had continued. This time he got his second exclusion, for a whole week.

I have spent the whole week practically imprisoned here with him, trying to get him to do some work from some workbooks from WHSmith. Sometimes he sat and did an hour or so but most of the time it was an uphill struggle. He's also been on a "porridge diet" 2 meals a day as part of his punishment so it's also involved keeping his face away from the fridge, etc. I'm knackered and I've put on weight from all the chocolate.

I thought he was going back to school this coming Tuesday (Monday being INSET) but got called to this meeting on Thursday. They're not having him back yet. He's going to be doing three mornings a week at the local behavioural centre place and two mornings a week at school after Easter. Because they haven't got a place for him until they ship someone else back to school, we have to take him there for an hour a day until the holidays. I take it that's so that the school gets out of taking him back. What a farce. Not enough time to get anything done but enough to muck up everyone's day.

Anyway, the behavioural centre say that he's likely to be there for quite some months while they assess him for the Statementing and determine whether he's going back to mainstream or find him an appropriate special school. His tour of the school he was due to start at in September has been put on hold since we don't know if he'll still be going there. He used to do after school football (when he was in the mood) so that's also down the gurgler.

He's clearly been upset and anxious about everything this weekend. I think he's understanding now how serious the situation has got but we're not all that convinced he's going to be able to improve. The only glimmer of hope is that he treats his Dad better than he treats me or his teachers, which suggests he has less respect for females. Certainly thinks he's a grown up and has little respect for authority in general.

They say that it will all be resolved within a year and he will be in appropriate education, but I think it's going to be a LONG year...

Meanwhile his younger brother is currently under the paediatrician, speech therapy, portage, occupational therapy and educational psychologist, all trying to catch his development up for school in September. He really, really looks forward to going. I'm trying to get him out of nappies still but we've having reasonable success (at the nursery end anyway). Just don't like the way he's picking up some behaviours from his brother, especially having IDIOT and SHUT UP bellowed at me all the time...

Sorry I've been waffling on but felt like I needed to vent a little to those that understand...

Oh, two more questions:
1 Paediatrician recommended Transporters DVD. Are any still available free from anywhere or do you just have to keep an eye on Ebay?
2 Do you really have to have a diagnosis before you can go on NAS parent courses or can you get on with proof you're on the assessment queue or something?

Ta
mousy

Mousy, if it makes you feel any better, when we took our son back after his second exclusion, we went into the meeting and within half an hour had to be called out to take him home again! So you're not the only one with a child with *ahem* challenging behaviour. Then he was put on part-time hours (which meant I lost my job :rolleyes: ). The turning point for us was when the County Autism Team got involved - until then, the staff didn't really have a clue tbh. Things do get better - our son's in school full time again now, statemented, and who knows might even get some education one day (he's not doing the same stuff as the rest of the class for most of the time at the moment, but working up to it).

I don't know the answers to your 2 questions, sorry. (Never heard of Transporters - what is that?)

blue_monkey_2

HI everyone,

I've not caught up with this thread, I popped in the other day and saw a few new pages so I'll have a look tonight and catch up. I am just back from the clinic and wanted to pour my mind out really.

We got the appointment for the clinic and saw a lovely doctor today, the school also went and she spoke to all of us. Having to speak about my awful family with the teacher there was mortifying, and the only time I nearly cried was when I saw that these so called 'friends' my son has tell him to do things and then laugh at him, not with him. And that he does not really have any friends, he plays with children but they are not 'friends' as such. But when I took him to the school lots of children came running over to the fence calling him. Which was lovely and nice to see.

But anyway, today he has been confirmed as having ADHD. The doc has mentioned that there is medication for 5 year olds, not for school use but for home. I also have to go back in 2-3 months time where she discuss this but also will be speaking to me without the school there as they want to assess his Autism.

I feel a bit empty and weird to be honest. Maybe guilty also Should I be doing more? Is this my fault? I know the answer is no but my mind is spiralling. Mind you I have had a headache for DAYS and now it has gone. I guess I must have had this appointment on my mind. I am not sure what I expected really.

But it is the M word that set my mind in a whirl. Do I want to medicate him for a better life for me or should I let him be as he is? The thing is I'll still have DD to deal with who is just as bad as he is (more so in fact). I know that this is a disorder of his brain but also feel that there is so much stigma and people judge kids who have ADHD. At our group the other day someone was talking about this and had said to their child that the medication restores the balance in their brain and this makes them the person that they are, not what the condition is making them so this is why they should take it.

I'll catch up more later, I just wanted to wallow in some biscuits and have a coffee before catching up on work here but I needed to offload it here, I hope no-one minds. Thanks.