Discussion
Hammer67 said:
AMLK, oldbanger. My footsteps are on the path you're both treading. I feel your pain. Stay strong chaps.
Some days just seem particularly bleak, you know?I looked after my siblings and in many ways also my parents when I was younger. So I wasn't ever going to have kids, not on your nelly. So selfish, eh? It seems like just desserts that just as I finally started getting my life on track that I find my mission in life is to look after two children with so many troubles. I would be over the moon to know they'd be capable of turning into self-supporting, capable adults.
oldbanger said:
Some days just seem particularly bleak, you know?
I looked after my siblings and in many ways also my parents when I was younger. So I wasn't ever going to have kids, not on your nelly. So selfish, eh? It seems like just desserts that just as I finally started getting my life on track that I find my mission in life is to look after two children with so many troubles. I would be over the moon to know they'd be capable of turning into self-supporting, capable adults.
One thing I`ve learned over the years having experienced life with an autistic son is that you have to be selfish and look after yourself and your partner/OH/wife because if you don't you get overwhelmed with all the issues you have to deal with. I should have been much more selfish but in the heat of the battles you lose focus on what really matters. A little of my story is here but it`s not an easy read. I looked after my siblings and in many ways also my parents when I was younger. So I wasn't ever going to have kids, not on your nelly. So selfish, eh? It seems like just desserts that just as I finally started getting my life on track that I find my mission in life is to look after two children with so many troubles. I would be over the moon to know they'd be capable of turning into self-supporting, capable adults.
http://www.pistonheads.com/gassing/topic.asp?h=0&a...
All the best, with you in spirit.
67Thanks hammer67, it is always good to hear things will improve.
Oldbanger I really feel for you, sometimes you wonder why you bother as nothing is right.
I have been through bad times recently, hence not posting much. I am signed off work with depression (on new meds, hopefully kick in soon), since I am off work it strengthens my daughter's case for not going to school, grrrr. My arthritis is also very bad (probably due to stress!), and it is hard not to be grumpy when I am in so much pain. It also seems my boss wants to get rid of me which really help me feel better,not! My parents realised the depths I had got into so came up for a week to help.
My house is now in a presentable condition again (thanks mum), and I have a letter of complaint written to go to nhs Fife - on investigation they made more cock ups than we knew (thanks Dad). My gp is being fab, contacting my occ health to say I AM fit for work as they say I am not thanks to my boss's exaggerations. CAMHS Dundee have accepted our case (yes another county to add to the mix!) so hopefully we will get our assessments before this year is over.
I can finally see light at the end of the tunnel again now.
Oldbanger, hang in there x
Oldbanger I really feel for you, sometimes you wonder why you bother as nothing is right.
I have been through bad times recently, hence not posting much. I am signed off work with depression (on new meds, hopefully kick in soon), since I am off work it strengthens my daughter's case for not going to school, grrrr. My arthritis is also very bad (probably due to stress!), and it is hard not to be grumpy when I am in so much pain. It also seems my boss wants to get rid of me which really help me feel better,not! My parents realised the depths I had got into so came up for a week to help.
My house is now in a presentable condition again (thanks mum), and I have a letter of complaint written to go to nhs Fife - on investigation they made more cock ups than we knew (thanks Dad). My gp is being fab, contacting my occ health to say I AM fit for work as they say I am not thanks to my boss's exaggerations. CAMHS Dundee have accepted our case (yes another county to add to the mix!) so hopefully we will get our assessments before this year is over.
I can finally see light at the end of the tunnel again now.
Oldbanger, hang in there x
AMLK said:
I can finally see light at the end of the tunnel again now.
or a train coming? 
Keep plodding, keep the faith. Its very tiring and frustrating and my respect/sympathies for doing what you can.
We too have seen a bit of a light in the tunnel or more precisely a sound - have been lucky that our daughter who is "challenging" has chilled remarkably since playing the oboe and finds it self calming. Thank God !!
Bloody noisy sometimes but she is doing well at it and its helping her and the rest of us. Still have blow ups but not as many. She is also doing indoor rock climbing which physically exhaust her so again helps stops the blow ups.
Had a bad moment a few weeks back where I had to restrain her ( to stop her from hitting/poking the wife) and then I filmed her so I could show her what she was like in her challenging times - OMG that freeked her out even more so she was then trying to grab the camera from me - and carried on chasing me, running around me until she exhausted herself after 15 mins and was sick and had asthmas attack collapsed on the sofa- she then when slightly recovered grabbed the dog and used him as a hostage - she woulnd listen to anything even showing her I had stopped/deleted the film. Not until I gave her the camera so she could see it was deleted did she let the dog go.
Not sure what to do if the dog gets taken hostage again- not sure if she would hurt him or not. don't think she would. I'll set up a poll next time - "give in to demands" or "let the dog have it"
any pre-votes?
x
Edited by superlightr on Tuesday 31st January 12:17
Edited by superlightr on Tuesday 31st January 12:19
AMLK said:
Thanks hammer67, it is always good to hear things will improve.
Oldbanger I really feel for you, sometimes you wonder why you bother as nothing is right.
I have been through bad times recently, hence not posting much. I am signed off work with depression (on new meds, hopefully kick in soon), since I am off work it strengthens my daughter's case for not going to school, grrrr. My arthritis is also very bad (probably due to stress!), and it is hard not to be grumpy when I am in so much pain. It also seems my boss wants to get rid of me which really help me feel better,not! My parents realised the depths I had got into so came up for a week to help.
My house is now in a presentable condition again (thanks mum), and I have a letter of complaint written to go to nhs Fife - on investigation they made more cock ups than we knew (thanks Dad). My gp is being fab, contacting my occ health to say I AM fit for work as they say I am not thanks to my boss's exaggerations. CAMHS Dundee have accepted our case (yes another county to add to the mix!) so hopefully we will get our assessments before this year is over.
I can finally see light at the end of the tunnel again now.
Oldbanger, hang in there x
AMLK it sounds like you've been through the mill, so it's good to see that your parents are helping and there's a way forwardOldbanger I really feel for you, sometimes you wonder why you bother as nothing is right.
I have been through bad times recently, hence not posting much. I am signed off work with depression (on new meds, hopefully kick in soon), since I am off work it strengthens my daughter's case for not going to school, grrrr. My arthritis is also very bad (probably due to stress!), and it is hard not to be grumpy when I am in so much pain. It also seems my boss wants to get rid of me which really help me feel better,not! My parents realised the depths I had got into so came up for a week to help.
My house is now in a presentable condition again (thanks mum), and I have a letter of complaint written to go to nhs Fife - on investigation they made more cock ups than we knew (thanks Dad). My gp is being fab, contacting my occ health to say I AM fit for work as they say I am not thanks to my boss's exaggerations. CAMHS Dundee have accepted our case (yes another county to add to the mix!) so hopefully we will get our assessments before this year is over.
I can finally see light at the end of the tunnel again now.
Oldbanger, hang in there x
Things are generally a lot better with the kids these days, though that does mean that the relapses can be a bit of a nasty shock. Things are broadly positive to be honest.
This just popped up on FB thought it might help:
https://autism.pw/2017/01/27/autism-challenges-fac...
xx
https://autism.pw/2017/01/27/autism-challenges-fac...
xx
mad4amanda said:
This just popped up on FB thought it might help:
https://autism.pw/2017/01/27/autism-challenges-fac...
xx
I can so relate to a lot of that, apart from sibling problems as we just have the one child - though I honestly don't think I could deal with more.https://autism.pw/2017/01/27/autism-challenges-fac...
xx
Superlightr I think you did the right thing videoing the incident, they honestly don't realised what state they get into. My daughter suggested we record a school morning with her to make the authorities realise how bad things can be. I think your dog is safe though, who could hurt that gorgeous wee fluff ball! Seriously though, dogs are good for them, it helps ground them. My daughter loves her therapy dog sessions.
As for us, still unpredictable good and bad days. School attendance is improving, and she seems to have more better days at school than not (shame morning's aren't the same!). I am meeting with someone next week that is going to act as her school advisory, she is going to unobtrusively shadow her at school to see what triggers problems and offer solutions that the school can put in place. She has done this many times for kids at the school, so fingers crossed this helps.
Also after many phone calls and emails Fife nhs has finally sent Anna's paperwork to nhs Tayside. They have acknowledged receipt and currently reviewing her case and we should get assessment appointments soon, yeah!!!
Normality, what is that? We survive on individuality and chaos here!
I am here to moan again - sorry but I don't know where else to turn, you guys understand.
I am a breaking point here, every day I am seeing a little bit of my daughter dying away. We are still not getting help and I don't think I can handle things anymore. I was put on new anti-depressants in January, at my review I felt better and was signed back to work and was to keep on the same level of medication. I realise now that the only reason I felt better was because we had been promised help and my parents were up to help out. That help has been rejected and my daughter and I are suffering. My parents have come back up to help but I am still not feeling better. I am scared to go back to my GP as I fear she will sign me off again, and I am scared that will led to me losing my job.
As for Anna I don't know what to do. We were promised NHS Tayside would accept her case, but heard 10 days ago they have rejected her referral as we don't live in their area, so we are back to useless Fife again. It has been nearly 2 years since her primary school head referred her for assessments. I have recently been told that Fife (where we live) have agreed to do her assessments (about bloody time) and she has been put on the FAST pathway - ironic name as the current wait for assessment on this pathway is 2 yrs!!!!
She is really struggling at school. She had a complete meltdown last Wednesday and my husband had to pick her up. We were unable to get her to school on the Fri (Thurs was too much snow, half the school didn't make it!!). Today she has received a detention for refusing to go to Science class(her most stressful subject due to the teacher - a fact they are very aware of). I am really annoyed as this is not going to help matters at all - I dread to think what tomorrow morning is going to be like. On questioning her about what happened she said that the new head of pupil support has changed the rules (as of last week) and she is no longer allowed in the hub at lunchtimes. The hub is where she goes to get her 'down' time to be able to managed the day. She is allowed in there during her free periods, but on a Wednesday that is her first lesson, so essentially she is not getting 'down time' during the day. Science is straight after lunch, so I am guessing she was still to stressed to deal with it. She said 3 teachers approached her together and shout at her to go to lesson, and when she refused she got a detention to be carried out tomorrow lunchtime. In reality I am guessing 3 teachers when up to her and told her to go to science in a stern voice. If you see that from her perspective that is really intimidating (she is small in stature too!). A detention at lunchtime is only likely to cause the same issue tomorrow. I understand that she can't always get what she wants, but is nobody noticing the real struggles she is going through?
Sorry to use this forum to rant yet again but I don't know where else to turn.
I am a breaking point here, every day I am seeing a little bit of my daughter dying away. We are still not getting help and I don't think I can handle things anymore. I was put on new anti-depressants in January, at my review I felt better and was signed back to work and was to keep on the same level of medication. I realise now that the only reason I felt better was because we had been promised help and my parents were up to help out. That help has been rejected and my daughter and I are suffering. My parents have come back up to help but I am still not feeling better. I am scared to go back to my GP as I fear she will sign me off again, and I am scared that will led to me losing my job.
As for Anna I don't know what to do. We were promised NHS Tayside would accept her case, but heard 10 days ago they have rejected her referral as we don't live in their area, so we are back to useless Fife again. It has been nearly 2 years since her primary school head referred her for assessments. I have recently been told that Fife (where we live) have agreed to do her assessments (about bloody time) and she has been put on the FAST pathway - ironic name as the current wait for assessment on this pathway is 2 yrs!!!!
She is really struggling at school. She had a complete meltdown last Wednesday and my husband had to pick her up. We were unable to get her to school on the Fri (Thurs was too much snow, half the school didn't make it!!). Today she has received a detention for refusing to go to Science class(her most stressful subject due to the teacher - a fact they are very aware of). I am really annoyed as this is not going to help matters at all - I dread to think what tomorrow morning is going to be like. On questioning her about what happened she said that the new head of pupil support has changed the rules (as of last week) and she is no longer allowed in the hub at lunchtimes. The hub is where she goes to get her 'down' time to be able to managed the day. She is allowed in there during her free periods, but on a Wednesday that is her first lesson, so essentially she is not getting 'down time' during the day. Science is straight after lunch, so I am guessing she was still to stressed to deal with it. She said 3 teachers approached her together and shout at her to go to lesson, and when she refused she got a detention to be carried out tomorrow lunchtime. In reality I am guessing 3 teachers when up to her and told her to go to science in a stern voice. If you see that from her perspective that is really intimidating (she is small in stature too!). A detention at lunchtime is only likely to cause the same issue tomorrow. I understand that she can't always get what she wants, but is nobody noticing the real struggles she is going through?
Sorry to use this forum to rant yet again but I don't know where else to turn.
Sorry to read things are going backwards again AMLK. You must be so terribly sad and frustrated.
I don't have any suggestions right now but I wanted to tell you that I know you guys will find a way, eventually. It's good to read that your parents are still staying with you to add some support too.
Hang in there girl. You've been working so hard to get things resolved for your daughter.
I don't have any suggestions right now but I wanted to tell you that I know you guys will find a way, eventually. It's good to read that your parents are still staying with you to add some support too.
Hang in there girl. You've been working so hard to get things resolved for your daughter.
AMLK said:
I am here to moan again - sorry but I don't know where else to turn, you guys understand.
I am a breaking point here, every day I am seeing a little bit of my daughter dying away. We are still not getting help and I don't think I can handle things anymore. I was put on new anti-depressants in January, at my review I felt better and was signed back to work and was to keep on the same level of medication. I realise now that the only reason I felt better was because we had been promised help and my parents were up to help out. That help has been rejected and my daughter and I are suffering. My parents have come back up to help but I am still not feeling better. I am scared to go back to my GP as I fear she will sign me off again, and I am scared that will led to me losing my job.
As for Anna I don't know what to do. We were promised NHS Tayside would accept her case, but heard 10 days ago they have rejected her referral as we don't live in their area, so we are back to useless Fife again. It has been nearly 2 years since her primary school head referred her for assessments. I have recently been told that Fife (where we live) have agreed to do her assessments (about bloody time) and she has been put on the FAST pathway - ironic name as the current wait for assessment on this pathway is 2 yrs!!!!
She is really struggling at school. She had a complete meltdown last Wednesday and my husband had to pick her up. We were unable to get her to school on the Fri (Thurs was too much snow, half the school didn't make it!!). Today she has received a detention for refusing to go to Science class(her most stressful subject due to the teacher - a fact they are very aware of). I am really annoyed as this is not going to help matters at all - I dread to think what tomorrow morning is going to be like. On questioning her about what happened she said that the new head of pupil support has changed the rules (as of last week) and she is no longer allowed in the hub at lunchtimes. The hub is where she goes to get her 'down' time to be able to managed the day. She is allowed in there during her free periods, but on a Wednesday that is her first lesson, so essentially she is not getting 'down time' during the day. Science is straight after lunch, so I am guessing she was still to stressed to deal with it. She said 3 teachers approached her together and shout at her to go to lesson, and when she refused she got a detention to be carried out tomorrow lunchtime. In reality I am guessing 3 teachers when up to her and told her to go to science in a stern voice. If you see that from her perspective that is really intimidating (she is small in stature too!). A detention at lunchtime is only likely to cause the same issue tomorrow. I understand that she can't always get what she wants, but is nobody noticing the real struggles she is going through?
Sorry to use this forum to rant yet again but I don't know where else to turn.
ahhhhh so difficult for you all. I am a breaking point here, every day I am seeing a little bit of my daughter dying away. We are still not getting help and I don't think I can handle things anymore. I was put on new anti-depressants in January, at my review I felt better and was signed back to work and was to keep on the same level of medication. I realise now that the only reason I felt better was because we had been promised help and my parents were up to help out. That help has been rejected and my daughter and I are suffering. My parents have come back up to help but I am still not feeling better. I am scared to go back to my GP as I fear she will sign me off again, and I am scared that will led to me losing my job.
As for Anna I don't know what to do. We were promised NHS Tayside would accept her case, but heard 10 days ago they have rejected her referral as we don't live in their area, so we are back to useless Fife again. It has been nearly 2 years since her primary school head referred her for assessments. I have recently been told that Fife (where we live) have agreed to do her assessments (about bloody time) and she has been put on the FAST pathway - ironic name as the current wait for assessment on this pathway is 2 yrs!!!!
She is really struggling at school. She had a complete meltdown last Wednesday and my husband had to pick her up. We were unable to get her to school on the Fri (Thurs was too much snow, half the school didn't make it!!). Today she has received a detention for refusing to go to Science class(her most stressful subject due to the teacher - a fact they are very aware of). I am really annoyed as this is not going to help matters at all - I dread to think what tomorrow morning is going to be like. On questioning her about what happened she said that the new head of pupil support has changed the rules (as of last week) and she is no longer allowed in the hub at lunchtimes. The hub is where she goes to get her 'down' time to be able to managed the day. She is allowed in there during her free periods, but on a Wednesday that is her first lesson, so essentially she is not getting 'down time' during the day. Science is straight after lunch, so I am guessing she was still to stressed to deal with it. She said 3 teachers approached her together and shout at her to go to lesson, and when she refused she got a detention to be carried out tomorrow lunchtime. In reality I am guessing 3 teachers when up to her and told her to go to science in a stern voice. If you see that from her perspective that is really intimidating (she is small in stature too!). A detention at lunchtime is only likely to cause the same issue tomorrow. I understand that she can't always get what she wants, but is nobody noticing the real struggles she is going through?
Sorry to use this forum to rant yet again but I don't know where else to turn.
I can only highlight what steps we have taken.
We in the end paid for the assessments and reports in order to bypass the government slow/backlogged methods. This may not be an option for you.
We now have 2 of our girls one with Asperges and one Dyslexia but who has expressed self harm under a phycaiatrist. Phycartrist (fek I cant spell it and autospell wont recognise it - my dyslexia sorry - I'm talking about a mental health doctor/specialist !) was very concerned and immediately has written that our daughter when she is finding classes too stressful and unable to cope must be allowed to leave the room and go somewhere quiet he has used the terms "abuse" and "torture" in their report to show how serious it is and for the school to take it seriously. The school have been excellent but it was need to be written down in a report to have it formally actioned.
Daughter is now getting weekly meetings with the mental health specialist (pls can someone correct my spelling on this one !) which starts next week. The other daughter has a 'red card' to get out of the lesson when feeling she cannot cope and has a quiet room to go to. She can also enter a classroom early leave early to avoid the crush in the corridors. The teachers are very understanding and we think the head teacher has a child in similar shoes.
I think the best thing to do is try if you are strong enough to meet with the head teacher and put all this down in a letter and give some guidance to them as to how they can help. We have written to the head and to each individual teacher highlighting that our daughters are not being 'bad' but just cannot cope with the sensory overloads some days. My wife has been brilliant in doing this but it does take an enormous amount of time and is very stressful for the whole family. Are there any charities nearby that may be able to help? CAB etc. Perhaps ask the head to read this tread on PH?
Edited by superlightr on Thursday 2nd March 11:21
Sorry to read that AMLK, been there, know what you`re going through.
All I will say is, trust your instincts.
Is the school the right place for your child?
If the answer is No then remove her. Force the issue but, of course, only you know if you and your family are in a position to handle the subsequent fallout from doing so.
We had to take this action with our lad and ultimately it worked. Took a while, Mrs H had to give up her job, but it worked. We were even threatened with prosecution at one point.
Take care and ATB.
All I will say is, trust your instincts.
Is the school the right place for your child?
If the answer is No then remove her. Force the issue but, of course, only you know if you and your family are in a position to handle the subsequent fallout from doing so.
We had to take this action with our lad and ultimately it worked. Took a while, Mrs H had to give up her job, but it worked. We were even threatened with prosecution at one point.
Take care and ATB.
Just had a quick read of this thread as my daughter has low level ASD;
Wow. Life in our house can be a challenge at times, but this thread has really put things into perspective.
My utmost respect goes out to you guys who have the more serious versions to deal with. Very best of luck with it to you all.
Wow. Life in our house can be a challenge at times, but this thread has really put things into perspective.
My utmost respect goes out to you guys who have the more serious versions to deal with. Very best of luck with it to you all.
Me again. Wish I could come on here and say all our problems have been solved, but it think that is an unachievable dream.
I'll start with the positive - we have a date for assessments!!!!!! It took a formal complaint, loads of phone calls and the intervention of a psychiatrist from another CAMHS board to get it, but this time next week it will all be over. Now I am worrying what the outcome of the assessments will be. Will there be a diagnosis that will result in funding for school? How do we go about getting funding? I know that after next week I am going to have another fight on my hands to get the support we desperately need. Why is it so hard to get help?
At home things are not good. A week before the Easter holiday I took the decision (rightly or wrongly I'm not sure) to take her out of school for 1 week, with the school's permission. I had my grandad's funeral to attend in the south of england and the easiest option was to take her with me, plus she never attends a full week of school at the moment. She was due back at school yesterday, but after more than 3 weeks off, coupled with being a Wednesday (her worst day) she did not go. This morning was a horrendous morning, but we have got her there, whether she manages a full day remains to be seen. She says she needs more support and help at school.
Things at school are changing too, and this is stressing her. The pupil support is the biggest change. They are reducing the number of students allowed in. Our daughter is 1 of the 11 students (of a school roll of 1300) allowed in. Unfortunately this means the 2 older girls she had become friends with in there are no longer going to be there at lunch and break times. This is a great shame as she really struggles with friendship and they seem to help her. The plus side of this is that they must class her as in significant need of support to allow her in, and hopefully this is reflected in the report the have given for her assessment (they are not allowed to attend the meeting as they are a different county - rolls eyes!)
I'm struggling too. I went back to my gp, had my antidepressant meds increased but allowed to stay at work. I am going back today, hopefully she will up my dose again. Work is a big problem, I know I should be signed off but I have been called up for an official review involving HR due to my level of sickness. I have got my union involved because of the complete lack of support at work. I have recently been registered disabled so I am hoping they can't get rid of me due to the disability discrimination act - there is still plenty of work I can still do in my department.
Sorry for the long rant, it is all I seem to do on here. I actually came on for some advice and opinions on schooling. Our daughter is highly intelligent (her learning support teacher said her stats results were one of the top in her year), but is struggling with the school environment. Home schooling is not an option, I do not have the patience required! If (and that is a big if) we are granted school funding as a result of her assessments do we
a) keep her at her current main stream school with extra support, or
b) send her to a specialist residential school? (currently looking at The New School in Butterstone, Dunkeld)
I can see pros and cons of both. Our daughter keeps wavering from one to the other. I think she honestly prefers the specialist school, but does not want to be away from home.
Any advice or experience of this would be extremely welcome.
I'll start with the positive - we have a date for assessments!!!!!! It took a formal complaint, loads of phone calls and the intervention of a psychiatrist from another CAMHS board to get it, but this time next week it will all be over. Now I am worrying what the outcome of the assessments will be. Will there be a diagnosis that will result in funding for school? How do we go about getting funding? I know that after next week I am going to have another fight on my hands to get the support we desperately need. Why is it so hard to get help?
At home things are not good. A week before the Easter holiday I took the decision (rightly or wrongly I'm not sure) to take her out of school for 1 week, with the school's permission. I had my grandad's funeral to attend in the south of england and the easiest option was to take her with me, plus she never attends a full week of school at the moment. She was due back at school yesterday, but after more than 3 weeks off, coupled with being a Wednesday (her worst day) she did not go. This morning was a horrendous morning, but we have got her there, whether she manages a full day remains to be seen. She says she needs more support and help at school.
Things at school are changing too, and this is stressing her. The pupil support is the biggest change. They are reducing the number of students allowed in. Our daughter is 1 of the 11 students (of a school roll of 1300) allowed in. Unfortunately this means the 2 older girls she had become friends with in there are no longer going to be there at lunch and break times. This is a great shame as she really struggles with friendship and they seem to help her. The plus side of this is that they must class her as in significant need of support to allow her in, and hopefully this is reflected in the report the have given for her assessment (they are not allowed to attend the meeting as they are a different county - rolls eyes!)
I'm struggling too. I went back to my gp, had my antidepressant meds increased but allowed to stay at work. I am going back today, hopefully she will up my dose again. Work is a big problem, I know I should be signed off but I have been called up for an official review involving HR due to my level of sickness. I have got my union involved because of the complete lack of support at work. I have recently been registered disabled so I am hoping they can't get rid of me due to the disability discrimination act - there is still plenty of work I can still do in my department.
Sorry for the long rant, it is all I seem to do on here. I actually came on for some advice and opinions on schooling. Our daughter is highly intelligent (her learning support teacher said her stats results were one of the top in her year), but is struggling with the school environment. Home schooling is not an option, I do not have the patience required! If (and that is a big if) we are granted school funding as a result of her assessments do we
a) keep her at her current main stream school with extra support, or
b) send her to a specialist residential school? (currently looking at The New School in Butterstone, Dunkeld)
I can see pros and cons of both. Our daughter keeps wavering from one to the other. I think she honestly prefers the specialist school, but does not want to be away from home.
Any advice or experience of this would be extremely welcome.
Edited by AMLK on Thursday 20th April 10:11
Hi,
I have just come out of this process.
My son is 9 and received a diagnosis of Autistic Spectrum Disorder with Sensory Issues a month ago. he is 9 and in mainstream school. Homelife is stable for now. School is turbulent and he is always in strife of some sort, has no friends and is rather upset by this. He is a good achiever academically when he is in the class but that isnt alot and he basically is not fulfilling his potential.
Re funding. A diagnosis unfortunately is not the answer but its a step in the right direction. The extra funding comes in two forms. Funding from the government for the school and Disability Living Allowance paid to you for the child. To obtain either you first need a diagnosis. For the school to get funding the child MUST have an EHCP (Early health care plan) This is what used to be called "Statementing" before they changed it. Getting an EHCP takes months and months of evidence gathering and processing. Once obtained it will culminate in an amount of hours that the child requires support for. In some cases it can be as little as 14 hours support a week. HOWEVER, the school has to provide the first 14-20 hours support themselves. That means they must financially support it and wont get any extra money.
An EHCP is almost always required first in order to gain access to a specialist school too.
The are notoriously difficult to get though so you will need the schools backing on it and they will drive the process. The school also have to prove they have done EVERYTHING they possibly can to support the child first and that has to be documented.
My advise is concentrate on the diagnosis and go from there. My journey took from age 6 to age nearly 10 to get anywhere.
I have just come out of this process.
My son is 9 and received a diagnosis of Autistic Spectrum Disorder with Sensory Issues a month ago. he is 9 and in mainstream school. Homelife is stable for now. School is turbulent and he is always in strife of some sort, has no friends and is rather upset by this. He is a good achiever academically when he is in the class but that isnt alot and he basically is not fulfilling his potential.
Re funding. A diagnosis unfortunately is not the answer but its a step in the right direction. The extra funding comes in two forms. Funding from the government for the school and Disability Living Allowance paid to you for the child. To obtain either you first need a diagnosis. For the school to get funding the child MUST have an EHCP (Early health care plan) This is what used to be called "Statementing" before they changed it. Getting an EHCP takes months and months of evidence gathering and processing. Once obtained it will culminate in an amount of hours that the child requires support for. In some cases it can be as little as 14 hours support a week. HOWEVER, the school has to provide the first 14-20 hours support themselves. That means they must financially support it and wont get any extra money.
An EHCP is almost always required first in order to gain access to a specialist school too.
The are notoriously difficult to get though so you will need the schools backing on it and they will drive the process. The school also have to prove they have done EVERYTHING they possibly can to support the child first and that has to be documented.
My advise is concentrate on the diagnosis and go from there. My journey took from age 6 to age nearly 10 to get anywhere.
Thanks Lemmonie.
We were at the hospital for 4 hours on Wed, and it was very enlightening. First of all our daughter went with a psychologist to do a cognitive test while we spoke with the paediatrician. After that she underwent a 'play' test with a speech therapist and occupational therapist, which we were allowed to observe behind a one way window. This I found quite heart breaking, I didn't realise how awkward she is socially, she must rely on us so much as she is not too bad when we are around. The hardest part was when they spoke to her about friends, she couldn't even define what friendship means.
After this they said they would need 30mins to discuss their findings and then they would give us their result. After just 5mins they were back with the diagnosis of ASD (I guess they all agreed easily!). It sounds awful but we are all so relieved, now perhaps we can get proper help for her. They are going to send their full report to us in about 4weeks, then we will meet with them in 6weeks so we can discuss any questions we have.
In the meantime they suggest she drops more non essential lessons at school to help her manage (though her IQ can back as 138, so she must persevere with school!!), and they are going to chase CAMHS as they are concerned about her mental heath.
I had a meeting at school to discuss the above. They will look at her dropping CDT, Art and Modern Studies (her choice). They are going to send a plan to all her teachers to explain her ASD and how they need to manage it. She is also going to attend a group session with one of the support teachers designed for kids with ASD to teach social skills and discuss emotions. Her learning support teacher is going to change to one who specialises in ASD, who fortunately my daughter loves - she describes her as being like a school mum!!
When the school get the full report I am going to have a meeting with the new head of pupil support to update her PDP and sort stuff out for S2. Fortunately the last few weeks of this year the pupils follow next year's timetable so they are familiar with it and get to know their teachers, I think this will be invaluable to our daughter.
So at the moment we are going to stay in main stream school if our daughter can manage it with the extra changes put in place to help her. To be honest this last week has seen a dramatic change in her, it is almost like we have a different child, she has actually been happy to go to school. This is not down to the diagnosis as this started before that. The only change is that she has got a different science teacher (she hated her other one - a physicist who was very 'old school'). It is so frustrating the one person can have such a dramatic impact on all our lives.
I have also enrolled on a few courses to improve my knowledge on ASD - a course run by the NHS for parents with ASD kids aged 9-14, and a few run by an ASD charity, one on inflexible thinking, one on social skills, one on anxiety and one on the law and parental rights.
Summing up, I can finally see the light at the end of the tunnel. Maybe there is hope for us yet.
We were at the hospital for 4 hours on Wed, and it was very enlightening. First of all our daughter went with a psychologist to do a cognitive test while we spoke with the paediatrician. After that she underwent a 'play' test with a speech therapist and occupational therapist, which we were allowed to observe behind a one way window. This I found quite heart breaking, I didn't realise how awkward she is socially, she must rely on us so much as she is not too bad when we are around. The hardest part was when they spoke to her about friends, she couldn't even define what friendship means.
After this they said they would need 30mins to discuss their findings and then they would give us their result. After just 5mins they were back with the diagnosis of ASD (I guess they all agreed easily!). It sounds awful but we are all so relieved, now perhaps we can get proper help for her. They are going to send their full report to us in about 4weeks, then we will meet with them in 6weeks so we can discuss any questions we have.
In the meantime they suggest she drops more non essential lessons at school to help her manage (though her IQ can back as 138, so she must persevere with school!!), and they are going to chase CAMHS as they are concerned about her mental heath.
I had a meeting at school to discuss the above. They will look at her dropping CDT, Art and Modern Studies (her choice). They are going to send a plan to all her teachers to explain her ASD and how they need to manage it. She is also going to attend a group session with one of the support teachers designed for kids with ASD to teach social skills and discuss emotions. Her learning support teacher is going to change to one who specialises in ASD, who fortunately my daughter loves - she describes her as being like a school mum!!
When the school get the full report I am going to have a meeting with the new head of pupil support to update her PDP and sort stuff out for S2. Fortunately the last few weeks of this year the pupils follow next year's timetable so they are familiar with it and get to know their teachers, I think this will be invaluable to our daughter.
So at the moment we are going to stay in main stream school if our daughter can manage it with the extra changes put in place to help her. To be honest this last week has seen a dramatic change in her, it is almost like we have a different child, she has actually been happy to go to school. This is not down to the diagnosis as this started before that. The only change is that she has got a different science teacher (she hated her other one - a physicist who was very 'old school'). It is so frustrating the one person can have such a dramatic impact on all our lives.
I have also enrolled on a few courses to improve my knowledge on ASD - a course run by the NHS for parents with ASD kids aged 9-14, and a few run by an ASD charity, one on inflexible thinking, one on social skills, one on anxiety and one on the law and parental rights.
Summing up, I can finally see the light at the end of the tunnel. Maybe there is hope for us yet.
Hey to everyone.
Up until Aug 2015, I was tutoring and supporting children on the Autistic spectrum with discerning courses (ESF funded so sadly no more) tailored for their educational needs.
I loved working with every one of them, more so than mainstream children. NOTHING gave me greater teaching happiness than seeing them achieve behavioural or academic success whilst they were with me and my staff.
I do miss them.
As a fortunate quirk of fate, early into my - now - career of house build/resto, I discovered a brick layer who I realised early on was on the AS. He is fab. I won't have anyone else lay bricks for me due to how damn good he is. Now I just need to find a chippie/pliumber and sparks as good in their disciplines as he is and I will be a happy man.
Up until Aug 2015, I was tutoring and supporting children on the Autistic spectrum with discerning courses (ESF funded so sadly no more) tailored for their educational needs.
I loved working with every one of them, more so than mainstream children. NOTHING gave me greater teaching happiness than seeing them achieve behavioural or academic success whilst they were with me and my staff.
I do miss them.
As a fortunate quirk of fate, early into my - now - career of house build/resto, I discovered a brick layer who I realised early on was on the AS. He is fab. I won't have anyone else lay bricks for me due to how damn good he is. Now I just need to find a chippie/pliumber and sparks as good in their disciplines as he is and I will be a happy man.
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