Cy has been attending the Vulnerable Pupil group without much incident for a few weeks :)
He missed a couple of days becasue he was upset over something (when he feels upset the emotions confuse him and he just tries to get control back so he feels 'safe'. One of the ways he does this is by staying at home.) We had taken a rescue greyhound out for the day one Sunday and when we got back to the kennels we were locked out so brought her home with us for the night. CY knew she had a home lined up, and that we weren't in a position to keep her but it threw him a little and he missed a couple of days.
Yesterday and today he has refused again :( There seem to be a few things at play. Firstly, the teacher he has bonded with at the group is leaving after Christmas so that will throw him. I just phoned the teacher and she said they'd noticed he's been unhappy the last couple of days, and unco-operative in a way they haven't seen before. She's put it down to the fact that his school have sent work, and the teachers at the unit have been told they have to do a certain amount of maths, English etc with the students in the unit each week. I can see where the directors are coming from but you don't get school refusers/ school phobics and Aspies to do work by making it obvious that it's school work!!! D'oh! CY is not happy about any work from school and has been reluctant to do it, even for Yvonne (his group teacher.) She is going to reformat it so he doesn't know it's from school. He still has to get his head around the fact she's leaving, though.
He also refused to put his hands in the pastry to make mince pies, which the teacher thought was him being awkward but I told her that's an Aspie 'texture' thing - he hates the feels of anything like that on his hands, and he hates washing his hands as well! She said he was reluctant to join in a couple of games as well - again we know him well enough to realise that he never joins in games straight away as his fear of embarrassment means he has to be 100% sure of the rules before he will attempt anything. I asked whether he joined in after ten minutes and she said 'yes' - this is his usual 'adjustment' time to get used to something new.
On the positive side, she said he has produced good work, he's doing GCSE level Maths and he is really tickling them all with his dry sense of humour which he's revealing now he feels comfortable there. CY has also been going in on Mondays as well, at his own request.
Hopefully, he will go back into the pupil group before the Christmas hols (ahh Christmas, another excitement that the rest of us love but Aspies often don't, that could be throwing him as well as he hates surprises/being the focus of attention/possibly having photos taken!). If he refuses up til Christmas he will have built it into a massive thing by New Year and we'll be back where we started.
The teachers are really good but have confessed they need to read up on Asperger's. Might lend them a couple of books. She said they thought he was being rude the other day then realised he was being funny - don't even think they know about the Asperger ''inappropriate'' tendency...!
Tuesday 15 December 2009
Tuesday 10 November 2009
Tuesday 3 November 2009
Unit
I rang the afternoon after the meeting about CY's place in the Vulnerable Pupil Unit as we didn't hear about the decision either on the day of the panel hearing or the day after, when we has been assured we would. I was told that his place had been approved and to wait for further details. After a week I hadn't heard from anyone re: CY's place at the Vulnerable Pupil Unit so rang the Ed.Welfare Dept myself. I spoke to CS's line manager and politely said, "Hello, this is CY's Mum, I'm just ringing to see how things are progressing with his place at the **** school." The lady in question very rudely said, " Yes CS is going to speak to Steve ok." and put the phone down on me!! I had no idea who Steve was/is! So I waited another few days and still didn't hear anything so rang the school myself and asked to speak to 'Steve' and finally got through to a very nice bloke who invited Joe over to the school to have a look around.
We went over the following day and were made very welcome by V and Y, two of the teachers in the unit. They showed us around, reassured Joe, and chatted for a while. They said he could go for a trial morning the following day which he did!! He actually went to school! Yay! Steve asked me to fill some forms in and as we did it became clear that he hadn't been informed of the decsision to accept CY - he thought we were waiting for the NEXT panel meeting! So, if I hadn't have rang him directly, we would still be waiting, presumably, because he didn't know anything about us.
Anyway, once they knew that the decision had been made already, they were very happy to have CY join them and he's been going three days a week since. He loves it, it's a very small group (one other boy with Asperger's and two girls with school phobia/ bullying problems) and seems much happier in himself. So his attendance has gone up from 0% to 60% (because he's in three days out of five). He is supposed to do Accipio on the computer on the other days but it is DIRE and doesn't appeal to him at all. Like all kids with AS he has to be interested to do something, he won't do it just to keep the peace or get higher attendance so I don't go to jail! And he just hates it, so he won't do it.
Today, I had a phone call from his school mentor to see how he's doing. As he's dual registered at his mainstream school and the Unit, she said he can only get his attendance mark for mainstream school if he does Accippio on those two days he's not in the Unit. But he won't, so for those two days they will mark him as TRUANT(!) apparently!! Now, it can't be 'truant' because that is misleading - I know he's not in, so by definition he's not 'truanting' and I won't have that word on his records. He's refusing to work because it has no relevance/ interest and doesn't address his learning needs. I asked if he could complete other work and have that count but she said unfortunately not because it wouldn't count as a lesson - even though I am a teacher and could do a 'lesson' for him and give them the work. They said it has to be Accippio or it doesn't count. Never mind that the Accippio lessons I've seen are so dull they wouldn't pass OFSTED... I asked if MyMaths work would count but apparently that wouldn't either. I've explained it all to CY who said, 'Tell them I'd do it if it wasn't bullshit...'. And I'm not putting too much pressure on because the next thing would be he's refuse to go to the Unit as well, which would be a tragedy as he's doing so well there - he's doing GCSE level maths, some English (which he normally won't do) Art and Science. I'm not risking his great progress just to get 100% attendance.
We have a meeting soon with CS et al to discuss attendance, among other things, during which we are also going to have to refuse to accept the last minutes, so this will make us even less popular. The last meeting was so patronising I could have cried.
So, again, we go from being really pleased with his progress to being brought right back down again because no matter what he does it's never good enough for Ed.Welfare. We can't just pull him from the system because then he would lose his place at the Unit so we are stuck at their mercy should they decide that 60% attendance is not good enough and take us to court. Very depressing when we should be feeling really happy that he's found something that works for him.
We went over the following day and were made very welcome by V and Y, two of the teachers in the unit. They showed us around, reassured Joe, and chatted for a while. They said he could go for a trial morning the following day which he did!! He actually went to school! Yay! Steve asked me to fill some forms in and as we did it became clear that he hadn't been informed of the decsision to accept CY - he thought we were waiting for the NEXT panel meeting! So, if I hadn't have rang him directly, we would still be waiting, presumably, because he didn't know anything about us.
Anyway, once they knew that the decision had been made already, they were very happy to have CY join them and he's been going three days a week since. He loves it, it's a very small group (one other boy with Asperger's and two girls with school phobia/ bullying problems) and seems much happier in himself. So his attendance has gone up from 0% to 60% (because he's in three days out of five). He is supposed to do Accipio on the computer on the other days but it is DIRE and doesn't appeal to him at all. Like all kids with AS he has to be interested to do something, he won't do it just to keep the peace or get higher attendance so I don't go to jail! And he just hates it, so he won't do it.
Today, I had a phone call from his school mentor to see how he's doing. As he's dual registered at his mainstream school and the Unit, she said he can only get his attendance mark for mainstream school if he does Accippio on those two days he's not in the Unit. But he won't, so for those two days they will mark him as TRUANT(!) apparently!! Now, it can't be 'truant' because that is misleading - I know he's not in, so by definition he's not 'truanting' and I won't have that word on his records. He's refusing to work because it has no relevance/ interest and doesn't address his learning needs. I asked if he could complete other work and have that count but she said unfortunately not because it wouldn't count as a lesson - even though I am a teacher and could do a 'lesson' for him and give them the work. They said it has to be Accippio or it doesn't count. Never mind that the Accippio lessons I've seen are so dull they wouldn't pass OFSTED... I asked if MyMaths work would count but apparently that wouldn't either. I've explained it all to CY who said, 'Tell them I'd do it if it wasn't bullshit...'. And I'm not putting too much pressure on because the next thing would be he's refuse to go to the Unit as well, which would be a tragedy as he's doing so well there - he's doing GCSE level maths, some English (which he normally won't do) Art and Science. I'm not risking his great progress just to get 100% attendance.
We have a meeting soon with CS et al to discuss attendance, among other things, during which we are also going to have to refuse to accept the last minutes, so this will make us even less popular. The last meeting was so patronising I could have cried.
So, again, we go from being really pleased with his progress to being brought right back down again because no matter what he does it's never good enough for Ed.Welfare. We can't just pull him from the system because then he would lose his place at the Unit so we are stuck at their mercy should they decide that 60% attendance is not good enough and take us to court. Very depressing when we should be feeling really happy that he's found something that works for him.
Monday 28 September 2009
After a few days of trying to get CY into school, we have had no success. They have done all they can, I think, in terms of getting him a private room, meeting him at home , setting up siutable work etc. We have done all we can in terms of seeling the idea to him as a good one.Perhaps now the LEA will get their finger out and sort out some kind of home tuition?
DF (new mentor) has been in contact a couple of times a week to check whether he's going in, but he just won't, and alongside the refusal we get his feeling of failure because he hasn't managedit, with the subsequent high behaviour at home. All we are doing, I think, is setting him up to fail.
Last Thursday there was meeting to decide if he has a place at the Vulnerable Pupil Unit, or whatever it's called this week. No-one contacted me last week to tell me the outcome, even though they know we are waiting for the verdict. Rang the Ed.Welfare dept today to be told CS isn't in and that the manager might get back to me today if she knows the information.
Waiting, waiting, waiting.
Still haven't had a letter from CAMHS confirming that they are underwriting the Psych report.
DF (new mentor) has been in contact a couple of times a week to check whether he's going in, but he just won't, and alongside the refusal we get his feeling of failure because he hasn't managedit, with the subsequent high behaviour at home. All we are doing, I think, is setting him up to fail.
Last Thursday there was meeting to decide if he has a place at the Vulnerable Pupil Unit, or whatever it's called this week. No-one contacted me last week to tell me the outcome, even though they know we are waiting for the verdict. Rang the Ed.Welfare dept today to be told CS isn't in and that the manager might get back to me today if she knows the information.
Waiting, waiting, waiting.
Still haven't had a letter from CAMHS confirming that they are underwriting the Psych report.
Tuesday 15 September 2009
And so it goes on
Last Thursday we had a meeting at school to discuss the way forward with CY. Again I requested a place at the Pupil Support Group to be told it has to go to the panel on 23rd Sept for a decision - all the time Joe's enthusiasm 'window' is lessening. No way of rushing it. No-one wants to stick their head out and make a bloody decision. And also, there are a limited number of places, I've been told so he may not get in. At which point I said that they will need to make a place because he has medical needs which have to, legally, be met. CS was trying to make out I thought it was easy to get this extra help - erm, yes, it's taken TWO YEARS and we are still no better off, I REALLY think this is easy......
School have arranged for CY to work with a new mentor who seems very nice. They still do not seem to accept the psychologists report, still saying they need a 'consultant' to make a diagnosis, even though the school Ed. Psych who was at the meeting said it was a very thorough report with clear recommendations. I asked again about Enhanced School Action PLus to be told he is already on School Action Plus (no-one bothered to tell us).We left the meeting with the arrangement that the new mentor would visit home to see CY on Monday (yesterday) and having been THOROUGHLY patronised by the SENCO. She was saying this is a new start for CY ands we have to put it to him positively, as if WE have caused this problem by telling him he can't do it. OMG. For two years we have been putting on the happy face for CY only to be devastated when he can't make it. For two years we have been ringing schools saying we can't get our son in after spending all morning being upbeat with him.
Better news last Friday (11th) as CAMHS key worker rang to say that their consultant HAS AGREED THE DIAGNOSIS OF ASPERGER"S as have three other specialists on their panel. So school can no longer rely on that 'we need a consultant' chestnut before they do anything. No-one wants a disabled child but when you have one and people are refusing to accept it, a formal diagnosis makes you very happy indeed.
Yesterday (Monday) CY's mentor came out and he was very co-operative, agreeing to go into school today for an hour and work with her. She had arranged a quiet room and suitable work etc so there shouldn't be problems. Except this morning after being quite chatty he suddenly stopped answering any of my questions (about breakfast etc), shut down and refused to interact. When I tried to ask about what he found difficult he wouldn't speak. I tried to explain about what school had put in place, to reassure him but he shouted at me to stop talking about school and started crying. It's like he thinks he can go in, but then finds it too difficult. Intellectually he wants to go (hence buying new shoes, stationery etc, telling friends) but doesn't actually get there.
Have rung school and spoken to JW (who at least now is very sympathetic) and DF, who is going to try again tomorrow and come out to the house if he won't go in. Have no idea what will happen next week when I start teaching again. Wish I'd never agreed to it, even if it's only a few hours.
Have decided to request Statement - had put it off as thinking WD (his mainstream school) is much better for him but it's not working and time is passing by. We don't have much left to lose if he won't go into his mainstream anyway. How long have I been saying he needs individual attention from tutors? I feel we are constantly experimenting with him, trying new ways to get him in when perhaps we should just accept he won't/ can't and try something else. All he's getting are messages of failure when he doesn't manage it. We've had a lovely child all Summer and today I have a very Aspergic child. Go figure.
School have arranged for CY to work with a new mentor who seems very nice. They still do not seem to accept the psychologists report, still saying they need a 'consultant' to make a diagnosis, even though the school Ed. Psych who was at the meeting said it was a very thorough report with clear recommendations. I asked again about Enhanced School Action PLus to be told he is already on School Action Plus (no-one bothered to tell us).We left the meeting with the arrangement that the new mentor would visit home to see CY on Monday (yesterday) and having been THOROUGHLY patronised by the SENCO. She was saying this is a new start for CY ands we have to put it to him positively, as if WE have caused this problem by telling him he can't do it. OMG. For two years we have been putting on the happy face for CY only to be devastated when he can't make it. For two years we have been ringing schools saying we can't get our son in after spending all morning being upbeat with him.
Better news last Friday (11th) as CAMHS key worker rang to say that their consultant HAS AGREED THE DIAGNOSIS OF ASPERGER"S as have three other specialists on their panel. So school can no longer rely on that 'we need a consultant' chestnut before they do anything. No-one wants a disabled child but when you have one and people are refusing to accept it, a formal diagnosis makes you very happy indeed.
Yesterday (Monday) CY's mentor came out and he was very co-operative, agreeing to go into school today for an hour and work with her. She had arranged a quiet room and suitable work etc so there shouldn't be problems. Except this morning after being quite chatty he suddenly stopped answering any of my questions (about breakfast etc), shut down and refused to interact. When I tried to ask about what he found difficult he wouldn't speak. I tried to explain about what school had put in place, to reassure him but he shouted at me to stop talking about school and started crying. It's like he thinks he can go in, but then finds it too difficult. Intellectually he wants to go (hence buying new shoes, stationery etc, telling friends) but doesn't actually get there.
Have rung school and spoken to JW (who at least now is very sympathetic) and DF, who is going to try again tomorrow and come out to the house if he won't go in. Have no idea what will happen next week when I start teaching again. Wish I'd never agreed to it, even if it's only a few hours.
Have decided to request Statement - had put it off as thinking WD (his mainstream school) is much better for him but it's not working and time is passing by. We don't have much left to lose if he won't go into his mainstream anyway. How long have I been saying he needs individual attention from tutors? I feel we are constantly experimenting with him, trying new ways to get him in when perhaps we should just accept he won't/ can't and try something else. All he's getting are messages of failure when he doesn't manage it. We've had a lovely child all Summer and today I have a very Aspergic child. Go figure.
Tuesday 18 August 2009
On the positive side..
..we've had a good Summer. CY seems to have re-made friends with M from down the road so now has two people he spends time with. He was good on holiday (only one meltdown to speak of), good at grandparents in Whitby (again only one upset and mostly due to being let down by his brother not wanting to go bodyboarding with him). He has asked to join Scouts (!) and goes to Games Workshop once a week to play Warhammer which is very independent of him (we drop him at the top of the street then stay in the shopping centre in case we get a phone call). He goes to the shop with his friend, buys himself a drink, goes to Games Workshop for 1 and half hours and then goes to McDonalds for 20 minutes. Seems independent, and is progress, although still very structured routine.
What about the start of term?
I rang the EWO today to see if CY has a place in the borough vulnerable pupil unit only to be told he hasn't even been referred yet because the woman who does it is on annual leave! I said it would be nice to know what he is doing at the start of term as it is only 2 weeks away and she said he should still be going to his mainstream High School (mmm the one he's been refusing to go to for most of the year??!) Apparently the referral wasn't even going to happen until well into September. CY seems really positive about going to this unit (only 4 kids per class, specialist teachers etc) and I don't want to give him time to go off the idea. EWO reckons it could be 6 weeks after the start of term before he gets his place. Will ring again tomorrow to see if there's anyway to hurry it up. Will also need to request an assessment as EWO says the idea of the VPU is to re-integrate them into mainstream which CY will not tolerate in the near future - far too many sensory issues and the way the curriculum is delivered is just not suitable for him. He needs strong visual images, no chance to get bored and little writing. I asked her if she read the Ed.Psych report and she has, but still doesn't seem to get the extent of CY's needs. She doesn't even know whether the kids wear uniform at the VPU despite sending several kids there. These kids are on a conveyor belt and once she's passed them on from her section she probably heaves a big sigh of relief. What a joke.
Wednesday 15 July 2009
Confirmed!
We went to see the private Ed.Psych on Monday and she did an ADOS test which confirmed all we have known for the past year (and more that we didn't know). CY DOES HAVE ASPERGER'S SYNDROME. The report will be ready in a couple of weeks, but she noticed loads of things that even we as his parents haven't cottoned on to.
Now perhaps they can pull their finger out at the LEA and get him the education he deserves. And we can start understanding our son instead of having every problem tinged with 'does he know what he's doing and needs a sanction or does he genuinely not understand?'
Am also getting more and more angry and appalled at the statement from our Ed.Welfare Officer when I said the only way CY would get qualifications would be to have home tutors and her reply was 'Perhaps we have to face up to fact that CY is not going to have the kind of life where he needs qualifications'. Yes, thanks for writing my son off when he's 12.
Today I have spoken to the SENCO at CY's school to let her know we will be taking up a place at the PRU if poss (so no more trying to get him into mainstream for the moment) and we'll be pushing for home tutors via assessment and possible Statement. She said school still didn't have enough evidence to do this themselves but that we should. Also said our private Ed.Psych had spoken to the school Ed.Psych (eek, anything over 5 minutes and we are having to pay the private Ed.Psych for her time!). She confirmed the actual report will be available in 2 weeks. I confirmed we will be writing to CAMHS to tell them of developments and hurry them up for a report, which is needed for LEA assessment.
Rang EWO at LEA to tell her we are keen to take up place at PRU and pursue home tutors. She wasn't in but GB is passing the message on.
Now ringing CAMHS Key Worker to find out name of Psych who is doing the tests there and see if we can hurry that up.
This is a full time job - there should be a person who does this co-ordinating for you!
Now perhaps they can pull their finger out at the LEA and get him the education he deserves. And we can start understanding our son instead of having every problem tinged with 'does he know what he's doing and needs a sanction or does he genuinely not understand?'
Am also getting more and more angry and appalled at the statement from our Ed.Welfare Officer when I said the only way CY would get qualifications would be to have home tutors and her reply was 'Perhaps we have to face up to fact that CY is not going to have the kind of life where he needs qualifications'. Yes, thanks for writing my son off when he's 12.
Today I have spoken to the SENCO at CY's school to let her know we will be taking up a place at the PRU if poss (so no more trying to get him into mainstream for the moment) and we'll be pushing for home tutors via assessment and possible Statement. She said school still didn't have enough evidence to do this themselves but that we should. Also said our private Ed.Psych had spoken to the school Ed.Psych (eek, anything over 5 minutes and we are having to pay the private Ed.Psych for her time!). She confirmed the actual report will be available in 2 weeks. I confirmed we will be writing to CAMHS to tell them of developments and hurry them up for a report, which is needed for LEA assessment.
Rang EWO at LEA to tell her we are keen to take up place at PRU and pursue home tutors. She wasn't in but GB is passing the message on.
Now ringing CAMHS Key Worker to find out name of Psych who is doing the tests there and see if we can hurry that up.
This is a full time job - there should be a person who does this co-ordinating for you!
Tuesday 7 July 2009
Current thoughts
Why have we had to pay privately for a diagnosis? In what other sphere of medicine would it be appropriate for a child to have to wait a year for a diagnosis while the finger is pointed at the parents because he can't get into school?
Why haven't the school written an IEP after a year??
Why haven't we been sent the minutes of any meetings yet?
Why have they failed to notify me by post of the last two meetings?
Why are they insisting they can't apply for an LEA assessment and statement without a diagnosis when every other forum./ parent partnership etcare telling me otherwise?
Why haven't the school written an IEP after a year??
Why haven't we been sent the minutes of any meetings yet?
Why have they failed to notify me by post of the last two meetings?
Why are they insisting they can't apply for an LEA assessment and statement without a diagnosis when every other forum./ parent partnership etcare telling me otherwise?
Wednesday 1 July 2009
Almost there with diagnosis :-)
After hearing 'we can only apply for support once he has a diagnosis' one too many times, and knowing that CAMHS will take UP TO A YEAR before CY is at the top of their list, we decided to take him to a private Ed.PSych. The lad just needs support and we didn't know what we we dealing with, so armed with an interest free credit card, we took him on Monday. Why can't the NHS be so easy? Why should we have to wait a year for our child to be tested when he has a medical problem. It's shocking, disgusting and I AM going to write to my MP about it.
Anyway.
CY was very co-operative with the private Ed. Psych. She was brilliant. In two hours of testing she could tell us the following:
He DOES have a Pervasive Developmental Disorder and it is likely to be Asperger's - she's going to do the ADOS test in 10 days time.
He is a very visual thnker and finds it very difficult to learn from words - hence preference for TV history programmes over books.
He has a severe probelm with his 'processing speed' which will need addressing.
He is gifted in maths but average at the other things she looked at. His lang problems manifest in his writing (spelling, handwriting process, reading for meaning) not really in his verbal language.
She DOES NOT recommend a special school placement as she thinks it is inappropriate, instead she thinks we should pursue LEA funded home tutors. YAY!!!!!!
She is going to write us a report after the ADOS. I spoke to the SENCO at school today and she still won't put in an LEA assessement request until we have the written report in front of us.
CY is still refusing school most days and will need a tutor who can tailor lessons to his specific ways of learning. He has missed almost two years of school now, attending only a couple of days a week at best and missing months at a time at worst. At least we are getting somewhere now, but it will have cost us about 1600 pounds in private Psychologist appointments and we are just a normal family who don't actually have that lying around! It's not right that we have had to do this.
Anyway.
CY was very co-operative with the private Ed. Psych. She was brilliant. In two hours of testing she could tell us the following:
He DOES have a Pervasive Developmental Disorder and it is likely to be Asperger's - she's going to do the ADOS test in 10 days time.
He is a very visual thnker and finds it very difficult to learn from words - hence preference for TV history programmes over books.
He has a severe probelm with his 'processing speed' which will need addressing.
He is gifted in maths but average at the other things she looked at. His lang problems manifest in his writing (spelling, handwriting process, reading for meaning) not really in his verbal language.
She DOES NOT recommend a special school placement as she thinks it is inappropriate, instead she thinks we should pursue LEA funded home tutors. YAY!!!!!!
She is going to write us a report after the ADOS. I spoke to the SENCO at school today and she still won't put in an LEA assessement request until we have the written report in front of us.
CY is still refusing school most days and will need a tutor who can tailor lessons to his specific ways of learning. He has missed almost two years of school now, attending only a couple of days a week at best and missing months at a time at worst. At least we are getting somewhere now, but it will have cost us about 1600 pounds in private Psychologist appointments and we are just a normal family who don't actually have that lying around! It's not right that we have had to do this.
Thursday 26 March 2009
Another battle with school. Gloves on.
After asking at school on Tuesday, it became clear that CY doesn't have an IEP (Individual Education Plan) when he should have one. They've hastily put together 'Pastoral Support Programme' and it says Special Needs: NO and Medical Factors: NO
OMG I am mad as hell.
Shelley Bunting at CAMHS told me clearly (and I asked her to repeat it to make sure!) that as far as CAMHS are concerned, Joe has Social Communication Disorder and it's probably Asperger's. I have told his Ed Welfare Officer this and she acts like I have Munchausen's by Proxy, as if I want my child to have Asperger's! No-one wants their child to have it, but the fact is, he does and we welcome it now because it explains so much about him. This afternoon I will write a massive list of why kids with SCD /AS find it so hard to go to school, and I will give it to the people who deal with Joe. Even when they gave me a form for referral to the Ed Psych it said 'school attendance' was the problem. No, my son has Asperger's and because of this he finds school hard. Having Asperger's is a problem.
I bet every parent in the UK has this same problem and we all have to fight it individually because people in schools aren't listening!
OMG I am mad as hell.
Shelley Bunting at CAMHS told me clearly (and I asked her to repeat it to make sure!) that as far as CAMHS are concerned, Joe has Social Communication Disorder and it's probably Asperger's. I have told his Ed Welfare Officer this and she acts like I have Munchausen's by Proxy, as if I want my child to have Asperger's! No-one wants their child to have it, but the fact is, he does and we welcome it now because it explains so much about him. This afternoon I will write a massive list of why kids with SCD /AS find it so hard to go to school, and I will give it to the people who deal with Joe. Even when they gave me a form for referral to the Ed Psych it said 'school attendance' was the problem. No, my son has Asperger's and because of this he finds school hard. Having Asperger's is a problem.
I bet every parent in the UK has this same problem and we all have to fight it individually because people in schools aren't listening!
Tuesday 3 March 2009
Reading age and more updates
CY did a reading test today at school and despite school refusing for at least half the time over the past two years, he's got a reading age of 16 years and six months...all more indicators towards why he's been school refusing and more evidence to spur the school into demonstrating how they can cater for his gifted and talented needs. CY has been attending willingly for a short amount of time twice a week and decides himself what he will learn. I'm absolutely convinced that this slow process is the only way we'll get him back into anything like a regular timetable. He needs to SEE and experience how school benefits him, no amount of telling him will do it as he cannot visualise or imagine anything other than his immediate needs and experience. Today he was there for 2 and a quarter hours, happily did the test and agreed to another one on Thursday. Being lovely at home though still prone to tears and hypersensitivity over daft things so needs supervision. Still needs quite rigid, time consuming bedtime routine but it works and he sleeps so worth it. He sleeps soundly now we allow the dogs to sleep in his room and it's having a positive impact on his mood and co-operation during the day. Went into town with his friend on Saturday, only the second time he's been out and about without adults - came back on the bus together, all new life skills and confidence building, all good:-)
Still not heard re: DISCO and neuro cog test. Must phone CAMHS. Have meeting Thursday 12th March with EWO et al to review progress at school and plan ahead. CY's mentor at achool has asked me to sign forms to allow him to work with the ed.psych but will need consultation with IM at CAMHS before I agree- don't want too many cooks spoiling the broth. To me, helping him cope with the Asperger's (or whatever it turns out to be) via CAMHS will get him into school of his own accord. One of the end results will hopefully be better and more productive school attendance but it's not the first and only goal - the EWO obviously has a different viewpoint to us here. Mrs O, the teacher in charge of the unit at school, is becoming our newest saviour - fantastic welcoming and calm attitude and flexibility just as R needs right now.
Chops Elder has to make options choices soon but seems well sorted in what he wants to do. Parents' Evening next week.
Still not heard re: DISCO and neuro cog test. Must phone CAMHS. Have meeting Thursday 12th March with EWO et al to review progress at school and plan ahead. CY's mentor at achool has asked me to sign forms to allow him to work with the ed.psych but will need consultation with IM at CAMHS before I agree- don't want too many cooks spoiling the broth. To me, helping him cope with the Asperger's (or whatever it turns out to be) via CAMHS will get him into school of his own accord. One of the end results will hopefully be better and more productive school attendance but it's not the first and only goal - the EWO obviously has a different viewpoint to us here. Mrs O, the teacher in charge of the unit at school, is becoming our newest saviour - fantastic welcoming and calm attitude and flexibility just as R needs right now.
Chops Elder has to make options choices soon but seems well sorted in what he wants to do. Parents' Evening next week.
Friday 6 February 2009
Pride before a fall? Hope not.
After much soul searching and debating I have just cancelled the doctor who was supposed to be coming to assess CY for Disability Living Allowance. CY already sees enough people regarding his Asperger's and I just can't bring myself to list all his faults to a strange doctor while CY sits there as if he is such a burden that I need someone to pay me to look after my own son. Poor child needs SOME self esteem. I won't do it and I'd rather not have the money, even though it will get pretty tight. Fortunately, I can do exam marking in the evenings to make ends meet - but I bet it doesn't feel fortunate in June when CY is having a meltdown and I've got 300 scripts to get through! Onwards and upwards, though - CY has managed a few hours in school this week for the first time after months of school refusal due to anxiety.
Sunday 1 February 2009
Saturday 31 January 2009
Why don't Education Welfare Officers listen to parents?
Chops Younger has been school refusing for over two years, off and on. After what seems like an age being treated like the worst possible parents ( because GOOD PARENTS would find a way to get their child into school) it is emerging that, far from being the manipulative explosive child that the Education Welfare people assumed, Chops Younger probably has Asperger's Syndome. His school refusal has been fuelled by absolute terror/ social anxiety which was why the poor kid would suffer any sanctions and refuse any rewards to get him into school.
CY and I had a meeting with CAMHS (Child and Adolescent Mental Health people) on Tuesday - the Education Welfare Officer from school was there and CY's angel of a specialist, IM. The idea was to thrash out a plan to get CY into school even for just an hour. CY has problems with mornings and I didn't want this mixing with his school problem so we arranged an hour on Thurs afternoon, where we would be given a timetable for next week. We have had no violent incidents from CY for months now as he feels so well supported by us and CAMHS and I'm not about to start it off by suddenly changing the goal posts.
CY, bless him, got all dressed up in his uniform on Thursday and went to school, into their pupil support unit for an hour and was fine. We were beginning to think this could never happen, a simple thing like our boy going to school. I was sooo proud of him - it sounds like nothing but was a massive step for him. The teacher there was wonderful with him and then I was given the timetable for next week, as organised by the EWO.
She's organised for him to start at 10am.
Not the afternoon as we asked.
And she wants the transition done in 6 weeks.
Not 8 weeks as CY asked.
Fortunately, CYs school mentor has a brother with Asperger's and knows the deal. She said as long as he does his hour and a half each day, the time he gets there is negotiable.
Why can't Education Welfare Officers listen to parents? We've spent two years with the threat of court action hanging over us because we couldn't get CY to attend school even though he is a very intelligent kid. Both Mr Chops and I work in education and value it - we weren't keeping him off school so we could go shopping with him! Believe me, the past couple of years would ahve been much easier for us if we didn't have to take loads of time off work. Can't even describe the stress of waking each morning to face a child who has completely locked himself into a silent passive world just to avoid the trauma of school. Just as we are making progress, they treat our requests with a pinch of the proverbial, as if we are making outrageous demands to take the piss. No, really, my son has school anxiety and (awaiting diagnosis but the experts think so) Asperger's. When we ask for afternoon appointments we are doing this to ensure success, not to be difficult. Please listen to us, EWOs. You have a job to get bums on school seats. We've got to ensure our boy can learn to face the world. And if it means getting labelled as a difficult Mum in order to make that happen, then let that be.
CY and I had a meeting with CAMHS (Child and Adolescent Mental Health people) on Tuesday - the Education Welfare Officer from school was there and CY's angel of a specialist, IM. The idea was to thrash out a plan to get CY into school even for just an hour. CY has problems with mornings and I didn't want this mixing with his school problem so we arranged an hour on Thurs afternoon, where we would be given a timetable for next week. We have had no violent incidents from CY for months now as he feels so well supported by us and CAMHS and I'm not about to start it off by suddenly changing the goal posts.
CY, bless him, got all dressed up in his uniform on Thursday and went to school, into their pupil support unit for an hour and was fine. We were beginning to think this could never happen, a simple thing like our boy going to school. I was sooo proud of him - it sounds like nothing but was a massive step for him. The teacher there was wonderful with him and then I was given the timetable for next week, as organised by the EWO.
She's organised for him to start at 10am.
Not the afternoon as we asked.
And she wants the transition done in 6 weeks.
Not 8 weeks as CY asked.
Fortunately, CYs school mentor has a brother with Asperger's and knows the deal. She said as long as he does his hour and a half each day, the time he gets there is negotiable.
Why can't Education Welfare Officers listen to parents? We've spent two years with the threat of court action hanging over us because we couldn't get CY to attend school even though he is a very intelligent kid. Both Mr Chops and I work in education and value it - we weren't keeping him off school so we could go shopping with him! Believe me, the past couple of years would ahve been much easier for us if we didn't have to take loads of time off work. Can't even describe the stress of waking each morning to face a child who has completely locked himself into a silent passive world just to avoid the trauma of school. Just as we are making progress, they treat our requests with a pinch of the proverbial, as if we are making outrageous demands to take the piss. No, really, my son has school anxiety and (awaiting diagnosis but the experts think so) Asperger's. When we ask for afternoon appointments we are doing this to ensure success, not to be difficult. Please listen to us, EWOs. You have a job to get bums on school seats. We've got to ensure our boy can learn to face the world. And if it means getting labelled as a difficult Mum in order to make that happen, then let that be.
The view from Chopsville changes quite quickly. Dark times only linger if I allow the conversation to continue, otherwise they pass on the next breeze. By the time I've written it, it doesn't matter anymore and probably isn't representative of my opinion anymore. Except views about the British Education system - these tend to remain strong and unwavering and are usually right.
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