deflated angry confused......

[lindy2017]

Hi, I had meeting this morning to discuss my son 12 yr old aspergers dx sept 2 .011....home tution since oct 2010 .....nurture unit available ....anxieties prevent him visting it now .........outcome of meeting home tutor to take hime to library or nurtuire unit or his school sen for tution.......he had meltdown when i told him will discuss with tutor tomorrow .....what i wanted to say does anyone have the deflated i had today and every time i go to meetings it was a shambles first the venue was changed 20 mins before then moblie phones were goign off in meeting when i spoke i felt as iff hey were not listening.,.....i was upset after i left cried when i got hiem discussed with son and hubby and were left deflated..........i will ahve to seek more support this year and have been on the phone since dx and emailing ...........does anyone have the same trouble ...........

[Sally44]

It appears to me that the main reason he is not in school is due to anxiety.

 

That should be being addressed by Clinical Psychology and/or CAHMS.

 

They can have meetings till they are blue in the face, but until the right professional is involved that can give the relevent advice, you are going round in circles.

 

Go to your GP and ask for a referal to Clinical Psychology or CAHMS that have experience of working with children with autism/aspergers. Explain to them that your son has not been in school since xxxxx due to anxiety and that he needs to be referred.

 

They maybe able to work with him on his anxiety. They maybe able to do some family sessions. They will be able to give advice to other professionals.

 

Have you looked at independent schools for children with Aspergers?

 

 

[Andy]

Hi Lindy, i can certainly sympathise with the disputive meetings. A really good experienced OT visited my sons school and arranged a meeting with us, the teacher from my sons class and herself to be present so that she could voice her concerns, and suggest classroom improvements. The Teacher plenty of notice of the meeting to keep the time available, but she kept leaving the meeting every five minutes, saying she had to attend to things. The meeting was a shambles, and the OT was seething at the behaviour and respect shown by the teacher, but nothing changed. every meeting we have been to seems to be rushed, or the room is no longer available so we sit on chaird in the corridor. It really angers me, and its difficult to express that in a school setting surrounded by young children.

Edited January 9, 2012 by Andy

[lindy2017]

It appears to me that the main reason he is not in school is due to anxiety.

 

That should be being addressed by Clinical Psychology and/or CAHMS.

 

They can have meetings till they are blue in the face, but until the right professional is involved that can give the relevent advice, you are going round in circles.

 

Go to your GP and ask for a referal to Clinical Psychology or CAHMS that have experience of working with children with autism/aspergers. Explain to them that your son has not been in school since xxxxx due to anxiety and that he needs to be referred.

 

They maybe able to work with him on his anxiety. They maybe able to do some family sessions. They will be able to give advice to other professionals.

 

Have you looked at independent schools for children with Aspergers?

I have a meeting with child psycharitist who dx him on friday ......when i said to her at meeting is there not any help for his anxieties as we have to address this first before education she said the community mental health nurse who visits us is the person who will help with this but she said he reported back that he was finding it hard to move further with my son and make progress.....she thinks hes a lovely laid back guy but that doesnt help me ... or am i expecting too much.....you are right i am goign round in circles and have to research most things myself which i dont mind snap cymru is one place i have contacted but the man who is suppose to help me hasnt been in touch since i contacted him beofre meeting he didnt turn up maybe hes ill know one knows.....i have applied for staturtory assessment they said letter would arrive in next few days as the 6 week deadline is coming up ....maybe this year will bring soem help ........yes it is due to his anxieties he is not at school......if i dont get any support we will ahve to de register .....

[lindy2017]

Hi Lindy, i can certainly sympathise with the disputive meetings. A really good experienced OT visited my sons school and arranged a meeting with us, the teacher from my sons class and herself to be present so that she could voice her concerns, and suggest classroom improvements. The Teacher plenty of notice of the meeting to keep the time available, but she kept leaving the meeting every five minutes, saying she had to attend to things. The meeting was a shambles, and the OT was seething at the behaviour and respect shown by the teacher, but nothing changed. every meeting we have been to seems to be rushed, or the room is no longer available so we sit on chaird in the corridor. It really angers me, and its difficult to express that in a school setting surrounded by young children.

Im glad im not the only one who has experienced this....why is it every time i go to meetings i come out un satisified ......angry sad ....it is so disrespectful makes you feel that they only have other things in their minds and your not important.....i have MS and its not helping me with all the worry ........

[Sally44]

I have always found it helps if you take someone with you who takes notes.

 

Towards the end, before we went to Tribunal, I ended up recording everything on a dictaphone. In that way you get on record what people say, what their opinions are, what they recommend, and who they say will do it, or what they say is not available. That is all helpful at any Tribunal.

 

At first the LA were funny about it and refused to allow me to tape meetings, saying that they required I made two copies and gave one of the copies to them at the end of the meeting so that I could not alter it . Luckily the CAHMS psychiatrist knew how to mic up a computer, and so the meeting went ahead and the LA had their copy. And it was useful at the Tribunal.

 

The main thing you need is a school placement where the child's needs are going to be met, all of them. For complex children that is often at an ASD specific independent school where all the provision is provided as standard and will not be removed or weakned at the next Annual Review. But you need to go to a Tribunal to get that, and you need reports that state that that is the only school that can meet your child's needs.

 

A mental health nurse may not be appropriate. They would need to have training and experience in working with children on the autistic spectrum. That is what you need to push for. And again it helps if you put that in writing to the CAHMS psychiatrist and ask her to respond. Tell them that under the Education Act ALL your sons need to be identified by a suitably qualified professional for them to be included in his Statement, and that those needs must be provided for and the professional MUST, by law, quantify and specify the amount of time and professional input needed to meet each and every need so that that can be included in the Statement. Then see what their response is.

 

Whatever their response is, it tends to be more by the book when they know you have written to them, and their response is going to be sent to an Educational Tribunal. It tends to concentrate the mind a bit more. Even if they don't reply, that is evidence in itself that your sons needs cannot be met expect in the school of your choice that has expertise and training/qualifications for children with similar difficulties to your child.

 

At the hospital there is also the PALS service, which is the equivalent of the Parent Partnership within the LA. They can give you advice regarding NHS professionals.

 

I don't know if that helps.

 

But basically you need to sit down and think what you want to achieve. And then you need to take the bull by the horns and start working methodically towards that goal. You need to get SEN law advice from places like www.ipsea.org.uk or www.network81.org.uk etc and you need to take it to a Tribunal. It takes alot of time and effort to do it. But there is no incentive for any professional to do anything otherwise, because by meeting your child's needs it costs them money.

 

Get in touch with the Parent Partnership and ask them to attend meetings with you, or a friend.

[lindy2017]

I have always found it helps if you take someone with you who takes notes.

 

Towards the end, before we went to Tribunal, I ended up recording everything on a dictaphone. In that way you get on record what people say, what their opinions are, what they recommend, and who they say will do it, or what they say is not available. That is all helpful at any Tribunal.

 

At first the LA were funny about it and refused to allow me to tape meetings, saying that they required I made two copies and gave one of the copies to them at the end of the meeting so that I could not alter it . Luckily the CAHMS psychiatrist knew how to mic up a computer, and so the meeting went ahead and the LA had their copy. And it was useful at the Tribunal.

 

The main thing you need is a school placement where the child's needs are going to be met, all of them. For complex children that is often at an ASD specific independent school where all the provision is provided as standard and will not be removed or weakned at the next Annual Review. But you need to go to a Tribunal to get that, and you need reports that state that that is the only school that can meet your child's needs.

 

A mental health nurse may not be appropriate. They would need to have training and experience in working with children on the autistic spectrum. That is what you need to push for. And again it helps if you put that in writing to the CAHMS psychiatrist and ask her to respond. Tell them that under the Education Act ALL your sons need to be identified by a suitably qualified professional for them to be included in his Statement, and that those needs must be provided for and the professional MUST, by law, quantify and specify the amount of time and professional input needed to meet each and every need so that that can be included in the Statement. Then see what their response is.

 

Whatever their response is, it tends to be more by the book when they know you have written to them, and their response is going to be sent to an Educational Tribunal. It tends to concentrate the mind a bit more. Even if they don't reply, that is evidence in itself that your sons needs cannot be met expect in the school of your choice that has expertise and training/qualifications for children with similar difficulties to your child.

 

At the hospital there is also the PALS service, which is the equivalent of the Parent Partnership within the LA. They can give you advice regarding NHS professionals.

 

I don't know if that helps.

 

But basically you need to sit down and think what you want to achieve. And then you need to take the bull by the horns and start working methodically towards that goal. You need to get SEN law advice from places like www.ipsea.org.uk or www.network81.org.uk etc and you need to take it to a Tribunal. It takes alot of time and effort to do it. But there is no incentive for any professional to do anything otherwise, because by meeting your child's needs it costs them money.

 

Get in touch with the Parent Partnership and ask them to attend meetings with you, or a friend.

Hi, Thanks for your help today home tutor came and my s on agreed to go to nurture unit for an hour on thursday although he didnt want to but did it for my sake then a woman from social services disabilities came phoned and said educational pyscologist from meeting yesterday said she should come and see us.......so tomorrrow morning shes coming .......they dont do parent partnersip here i got in touch with snap their a charity run for people like us and give help and support unfortuneatly the man who is suppose to help is not available and dont know what has happened to him....time will tell for that one....this is wales with the worst education report so that doesnt help .........theyve to get their act together this year or else ......i have been in touch with education chief through my welsh assessmbly mp so waiting to hear from her.....it depends where you live what help you get i thin ill have tpo move......i got in touch with ipsea and the woman there was helpful and said go for the staturtory assessment.....i dont have any friends they all live in scotland.........it all comes down to money..........

[Sally44]

If there is no-one to go with you, then you take notes as best you can.

 

Try to get the EP to talk about what she is going to do ie. assess him. Ask that she uses standardised assessments [because they don't automatically use them]. Only standardised assessments will give you a baseline reading of his skills and deficits.

 

Try to keep batting the ball back into her court. Don't let her get you talking for hours. She is an EP. If she does her job she will be able to clearly see what the issues are.

 

Just keep what you want down to a simple concise sentence. Ours used to be "we want our son to be in a school that can meet all his needs and where he will be able to cope and will be happy to go into school and where he will make progress." That just about sums up what everyone wants for their child.

 

If she starts asking you if you would agree to specific things like "if I am able to find a place in xxx school, would you be happy for your son to go there." Just reply by saying that you would be more than willing to go and visit any school that the EP thinks could meet his needs."

 

After the meeting, type up your notes, and send them to the EP as your notes taken from the meeting detailing what was discussed and what was agreed.

 

Don't be afraid to ask everyone to wait a minute while you write up something important that has just been said.

 

IF you feel it would be useful to record this meeting, can you get hold of two dictaphones? Then you can record the meeting and give a copy to the EP, if she wants it.

 

The EP will probably not be able to give you any concrete guarantees because it is the LA Inclusion Officers that do that. And I presume that there is not one coming to this meeting, or to the Annual Review?

 

What do you want to achieve from the Annual Review. Do you want the Statement amended, things added, a different placement, increased therapies etc.

 

I'm a bit confused: if you already have a Statement and will be having an Annual Review, why is IPSEA advising you to seek a statutory assessment towards a Statement?

 

If you don't have a Statement, then definately you need to write to the LA asking them to assess your son. His educational needs are obviously not being met if he isn't even in school.

 

And if you don't already have a Statement, what is this Review you mention? Is it just a meeting and you don't have a Statement.

[lindy2017]

I was adviced from IPSEA to apply for statutory assessment..............i have done that ..........i was told letter is on its way to do with it...................someone from social services disability team is coming today to assess..........................the EP instructed this .............................he is stressed at the thought of going back to nurture unit on thursday for an hour with home tutor................tome the nurture unit is the best place for him under 10 pupils small no noise.....side entrance dont have to go through mainstream part of school...............but it seams anything to do with school is a big anxieity to him.........on friday i have meeting with child psychatrist who dx him this is the first proper meeting since he was dx in september ..................hes suppose to come to this meeting but was saying he didnt want to go last night was anxious about everything.........thanks again for your knowledge .......

[Sally44]

My son also has huge anxieties.

 

We have Clinical Psychology who have said that they don't think it would work to do any sessions with him.

 

We have CAHMS who say that although they could medicate him straight away, that as he is capable, it is worth doing some sessions with him and me to try to teach him some ways of managing his anxiety. Because the psychiatrist says that although medication can work, it does not address anything, and so the anxiety is never resolved - which I can understand.

 

However, as in your case, it is difficult to get my son out the door. The school do assure me that he is fine once he has arrived with them. And I can see that he is fine when he comes home. It is definately the transition between home and school that is the major issue. And he cannot control his anxiety.

 

I've got an appointment with the Developmental Paediatrician on Thursday and will talk all this over with her again.

 

I just want something to happen BEFORE he gets so anxious he either refuses or becomes ill again.

 

So I do understand where you are. And you are working in the right direction.

 

If you feel the nurture unit can meet all his needs, then go for that as the placement with all the support and therapies he needs.

 

Try to get some sessions in place with your son, you and school, if possible. So that Clinical Psychology can work with you and your son for some sessions and help him to identify and control is anxiety as much as he can.

 

When you see the psychiatrist ask her opinion about whether he needs medication, but also ask her to write to ClinPsych and request that some sessions are done - simply because it is worth trying and if it works, then he may not even need the medication.

 

You also want all this in writing [and ask for a copy of correspondence to be sent to you], to include as part of the Statementing process that he has extreme anxiety.

[lindy2017]

Hi, Thanks for help again.......this site gives more than the professionals.............dr cp did mention medication as last resort when we were at meeting in the school seewhat she says on friday.......let you know what the SS woman says ..........

[lindy2017]

social services disability woman came yesterday she was really nice so that helped she went through family history and everyhting that has happened with my son up to now she suggested getting an OT involved as she said the one connected to our CAMHS unit can specialise on children who find it hard going to school so shes getting back to me on that ........she told me about other boys in area who are similar to my son which made me feel better not alone and only one......next week im going to a meeting connected to NAS local woman set it up for mums like me the local press will be there to put another stry in the paper as they did before to highlight the problems we have on gwent if oyur child is on the autistic spectrum......spoke to welsh assembly members office for our area and the girl said she got word back that they are looking into it weasked for help from them as i felt so vurnerable .......she conctacted the chief of education ......will see today if he will go to nurture unit fingers crossed maybe i should go in and try and see if i can explain things first hand to a member of staff .........

[Sally44]

Does the nurture unit have an Educational Psychologist that they use? You can ask for their name and phone them up and talk to them and ask their advice and ask them to get involved [school would probably need to okay her involvement]. And be very specific in asking her what SHE/HE is going to do, what counselling or sessions she can do with your son and yourself or if she thinks he needs to be seen by ClinPsych or CAHMS ask her to refer him on.

 

The OT may have some advice but his difficulties are most likely due to anxiety, which can be a mental disorder and a separate diagnosis in itself, although it is related to being on the spectrum. And it is Clinical Psychology and CAHMS that deal with that side of things.

[lindy2017]

Our EP was at meeting and requested social services woman to come but the down side to ehr is she got it wrong again said that my son used towalk the dog every day and now he doesnt.....................we dont have a dog wehave 3 cats and a rabbit.......................another time she got the family history wrong so dont have much faith in her...from the start.....she has only met my son once in 2010......i dont know if nurture unit uses their own EP will have to ask today myself as i found it is better than relying on others.....if my son wont go to unit today i will meet his tutor and we can both go in and tell them about how it is now ............thanks for your help will let you know.....

[lindy2017]

My son agreed to go to nurture unit yesterday took most of the morning till half hour before we left at lunch time ......he put his s chool trousers on and shirt was saying ive got to go dont want to go......stayed in bed longer to avoid it....didnt eat got there and his tutor and i went in i updated her on what has been going on.....we talked to him reassured him etc....i left when i came back he had a smile on his face ...said it ok as there was hardly anyone about apart form a few teachers walking by ....he said he would go again on tuesday so ahve to wait and see........i got phone call from man from snap charity so hes going to help me ......