17 year old going on 12 and emotionally burnt out!

[szxmum]

Hi everyone

 

I've been carrying on with my reading on Asperger's and am "somewhat" relieved to see that the patterns of behaviour that ds is exhibiting are not unique.

 

I have on my hands an emotionally burnt out 17 year old with a whole raft of mental health issues that have arisen from the anxiety overload mostly experienced during secondary school. Over the past five years, we have lurched from crisis to crisis until ds physically could not function - three weeks ago, we withdrew him from sixth form and successfully applied for DLA for ds and Carer's Alowance for me.

 

Since leaving secondary school, I am glad to say that the anxiety has substantially decreased - ds is a lot happier and more relaxed. We haven't had a panic attack in ages and the OCD and autistic behaviours, although still present, are intruding less on family life and becoming more manageable :thumbs:

However, it makes me sad that things have come to this - over the years we have dealt with CAMHS, AMHS and the school Nurture Group but the thing that has made the biggest improvement in ds's life was to take him out of school. Now that he no longer has to deal with the social and sensory environment he is a changed person

 

My concern is now, what next? There is no way he is ready for college or work (even voluntary). Intellectually, ds is very bright but in terms of social maturity he does not seem to have aged since he left primary school. He is retreating into the online and gaming world - Sonic and Mario; he avidly follows Doctor Who and is still obsessed by Pokemon and Yu-gi-oh. He has no interest in fashion, his appearance,going to a pub or nightclub, driving a car or going to work. He would like a girlfriend but runs in the opposite direction any time he passes close to a girl in the street or in a shop. He has no friends and is very isolated. However, he seems happy and for that I am thankful.

 

I appreciate that he needs time to "heal" - secondary school has cost him a lot in terms of his mental well-being. From my reading, I see that he also needs time to mature socially or at least time to learn how to act like an adult. But I have to be honest, I'm finding this difficult (probably more so than him, he is just happy that he no longer has to deal with school). He has stepped out the "normal" or expected pattern of development. Nobody can say to me eg in 3 years, 5 years, 10 years ds will be ready to step back into society - go to college, get a job, get a girlfriend / house / family. I don't know what his future holds, I have lost all the "normal" points of reference and it is hard.

 

In addition, I feel like I have lost my own identity - I have always worked part or full-time. I am now dependant on my husband and am a carer whose main (important) function is to "just be there" . I do appreciate the importance of "being there" but the days feel very long and lonely and I'm finding that hard too.

 

Sorry for the rambly post but at least writing it down is clearing my head.

 

Any thoughts, especially on the social maturity aspect of AS would be gratefully received,

Szxmum xxx

 

 

[bid]

Hi Szxmum

 

My son had a severe breakdown when he was 14 after 10 years of struggling in the mainstream school environment. He was out of school for 6 months before going to a residential special school for AS.

 

When he was at home I also had a toddler, plus two older girls. I found it very, very difficult. As you say, your son definitely needs time to heal. I remember feeling terribly guilty because I basically let my son sleep, but the LA EP said to me that when an adult has a breakdown they are allowed to rest and heal, and an adolescent is no different. I tried to get him out of the house once a week (to the cinema, swimming, etc) with variable success. After about 3 months we had home tutors twice a week, which helped to give his day more structure, and I also introduced a very detailed daily timetable going through the day hour by hour to include time out of his room, off the computer, trips out, etc.

 

We were very lucky because my son really wanted to go to his new school, and once there his progress was dramatic. Without a goal like that in sight, I think you have to take each day as it comes, and after a while start to build very small things into his day to give it a structure. I do think exercise is very important, maybe swimming once a week at first...I was never very good at implementing this for us, but once my son went to his new school he discovered wall-climbing which he really enjoyed.

 

As for emotional development, professionals now pretty much recognise that as a rule of thumb you can subtract a third of their chronological age to get their emotional age. Again, I think you can't look too far ahead, and remember that even if other people wouldn't be 'happy' with a certain life-style, if your son is happy that's all that matters. What about investigating any social groups locally around his special interests...that way you can gently encourage social skills and possible friendships but within a 'safe' scenario.

 

Just to give you a glimmer of hope: 5 years after my son's breakdown he now has a full-time job and travels independently around the country to meet up with mates from school

 

Bid

Edited June 16, 2009 by bid

[alexmum2]

Hi everyone

 

I've been carrying on with my reading on Asperger's and am "somewhat" relieved to see that the patterns of behaviour that ds is exhibiting are not unique.

 

I have on my hands an emotionally burnt out 17 year old with a whole raft of mental health issues that have arisen from the anxiety overload mostly experienced during secondary school. Over the past five years, we have lurched from crisis to crisis until ds physically could not function - three weeks ago, we withdrew him from sixth form and successfully applied for DLA for ds and Carer's Alowance for me.

 

Since leaving secondary school, I am glad to say that the anxiety has substantially decreased - ds is a lot happier and more relaxed. We haven't had a panic attack in ages and the OCD and autistic behaviours, although still present, are intruding less on family life and becoming more manageable :thumbs:

However, it makes me sad that things have come to this - over the years we have dealt with CAMHS, AMHS and the school Nurture Group but the thing that has made the biggest improvement in ds's life was to take him out of school. Now that he no longer has to deal with the social and sensory environment he is a changed person

 

My concern is now, what next? There is no way he is ready for college or work (even voluntary). Intellectually, ds is very bright but in terms of social maturity he does not seem to have aged since he left primary school. He is retreating into the online and gaming world - Sonic and Mario; he avidly follows Doctor Who and is still obsessed by Pokemon and Yu-gi-oh. He has no interest in fashion, his appearance,going to a pub or nightclub, driving a car or going to work. He would like a girlfriend but runs in the opposite direction any time he passes close to a girl in the street or in a shop. He has no friends and is very isolated. However, he seems happy and for that I am thankful.

 

I appreciate that he needs time to "heal" - secondary school has cost him a lot in terms of his mental well-being. From my reading, I see that he also needs time to mature socially or at least time to learn how to act like an adult. But I have to be honest, I'm finding this difficult (probably more so than him, he is just happy that he no longer has to deal with school). He has stepped out the "normal" or expected pattern of development. Nobody can say to me eg in 3 years, 5 years, 10 years ds will be ready to step back into society - go to college, get a job, get a girlfriend / house / family. I don't know what his future holds, I have lost all the "normal" points of reference and it is hard.

 

In addition, I feel like I have lost my own identity - I have always worked part or full-time. I am now dependant on my husband and am a carer whose main (important) function is to "just be there" . I do appreciate the importance of "being there" but the days feel very long and lonely and I'm finding that hard too.

 

Sorry for the rambly post but at least writing it down is clearing my head.

 

Any thoughts, especially on the social maturity aspect of AS would be gratefully received,

Szxmum xxx

 

[alexmum2]

Hi everyone

 

I've been carrying on with my reading on Asperger's and am "somewhat" relieved to see that the patterns of behaviour that ds is exhibiting are not unique.

 

I have on my hands an emotionally burnt out 17 year old with a whole raft of mental health issues that have arisen from the anxiety overload mostly experienced during secondary school. Over the past five years, we have lurched from crisis to crisis until ds physically could not function - three weeks ago, we withdrew him from sixth form and successfully applied for DLA for ds and Carer's Alowance for me.

 

Since leaving secondary school, I am glad to say that the anxiety has substantially decreased - ds is a lot happier and more relaxed. We haven't had a panic attack in ages and the OCD and autistic behaviours, although still present, are intruding less on family life and becoming more manageable :thumbs:

However, it makes me sad that things have come to this - over the years we have dealt with CAMHS, AMHS and the school Nurture Group but the thing that has made the biggest improvement in ds's life was to take him out of school. Now that he no longer has to deal with the social and sensory environment he is a changed person

 

My concern is now, what next? There is no way he is ready for college or work (even voluntary). Intellectually, ds is very bright but in terms of social maturity he does not seem to have aged since he left primary school. He is retreating into the online and gaming world - Sonic and Mario; he avidly follows Doctor Who and is still obsessed by Pokemon and Yu-gi-oh. He has no interest in fashion, his appearance,going to a pub or nightclub, driving a car or going to work. He would like a girlfriend but runs in the opposite direction any time he passes close to a girl in the street or in a shop. He has no friends and is very isolated. However, he seems happy and for that I am thankful.

 

I appreciate that he needs time to "heal" - secondary school has cost him a lot in terms of his mental well-being. From my reading, I see that he also needs time to mature socially or at least time to learn how to act like an adult. But I have to be honest, I'm finding this difficult (probably more so than him, he is just happy that he no longer has to deal with school). He has stepped out the "normal" or expected pattern of development. Nobody can say to me eg in 3 years, 5 years, 10 years ds will be ready to step back into society - go to college, get a job, get a girlfriend / house / family. I don't know what his future holds, I have lost all the "normal" points of reference and it is hard.

 

In addition, I feel like I have lost my own identity - I have always worked part or full-time. I am now dependant on my husband and am a carer whose main (important) function is to "just be there" . I do appreciate the importance of "being there" but the days feel very long and lonely and I'm finding that hard too.

 

Sorry for the rambly post but at least writing it down is clearing my head.

 

Any thoughts, especially on the social maturity aspect of AS would be gratefully received,

Szxmum xxx

 

[alexmum2]

Just reading your post makes me wonder if I am putting my son through a night mare., and would I be better of taking him out of secondary school now rather that wait till he has a nervous break down.

He has had a very difficult time so far(he is in yr7) so much so that our last visit to Camhs revealed he was suffering from depression. I know that when he has to go back after the holidays in September he will be distroyed.

He has only one friend at the school but only sees her during lunch breaks and during 3 lesson periods a week; the rest of the time he is on his own.

He hates walking into lessons because he says that he dreads not finding a table where he can sit by himself because if he has to sit next to another pupil the rest of the class call out to the kid he is sat next to, that he sitting with the freek or retard. he feels that everyone hates him apart from this one girl who accepts him for waht he is, she however does not have a group of friends that she can introduce him to as she is a loner too. I tried to persuade my son to invite her to the cinema or for tea, but he just says she not that much of a friend just the only person that talks to him.

I feel my son's life will head the same path as yours, because even now I have difficulty persuading him out wether to swimming or bowling or any activity he just wants to sit in front of his computor.

He is not as mature as the rest of his peer group but he is a lot brighter than most of his form tutor group, i worry what to do for the best and what the future holds.

Just like to say you sound a wonderful caring understand parent and I'm sure with your support your son will blossom.

[nellie]

Hi Szxmum <'>

 

My youngest son was diagnosed with AS at 21. He started to fail during his A levels. He went into full time employment on leaving school but eventually crashed in his late 20's. He attempted suicide and admitted himself to hospital for his own safety, discharging himself the day after his 21st birthday. Knowing when to push and how hard to push was difficult but my instincts told me to give him time and space to recover. I did however try to make him responsible for some things such as washing himself, his clothes and bedding. I would only intervene if the smell became unbearable!!

 

He's now 28, it has taken him 7 years to get where is. Apart from the odd hiccup he is happy and enjoys life. He works 4 days a week for MENCAP plus a Saturday job, (both pay well). Working for MENCAP means he has good support and a chance to learn about people with learning difficulties. He still lives at home and contributes to the running of the house. He has a good social life and plays sport. He drives, cooks, cleans, does his own washing, takes full responsibility for his dog, he is a joy to live with. We feel he is almost ready to leave the nest (with a little support), we shall encourage him if and when he wants to.

 

I look back and wonder how I survived those 7 years, as a carer I felt helpless and alone. It's awful watching your offspring so low and disabled. I decided to work from home where I could appear busy and be close at hand but not in his face. I worked from home as a volunteer for my local autistic society and spent hours on this forum giving advice where I could. It kept me busy, supporting others gave me a purpose.

 

Both my sons found school a struggle, they appeared to cope but internalised their anxieties which had a serious effect on their mental health. I knew my eldest was suffering but couldn't get anyone to understand that he was, although he looked as if he was coping at school his behaviour at home proved otherwise. Sadly my youngest managed to hold it together at work, school and home without anyone (even his close family) realising how he was suffering.

 

I agree with Bid our children are often slower to mature. Hang on in there, I'm sure things will improve with time. Try to encourage and motivate him (not easy) but give him time and space when he needs it. It's important to look after yourself too. Lots of me time and don't forget to reward yourself, even if it's just a pat on the back, which I'm sure you deserve.

 

Good luck and take care. <'> <'>

 

Nellie xx

Edited June 16, 2009 by nellie

[lisac]

I understand all this. Once my son left school ( he is now 22) lots of things became clearer . I understand him better now, as all the 'triggers' have been taken away . It is extremely hard if your children are sensitive . I could never have home tutored though, as at the time I had no money and really needed the break, so my poor son, had to go to school, the best i could do was to persuade the school ( spa asd school ) to try and teach him seperately in a quiet room, they didnt even know how to manage him. I feel guilty about it, but you do the best you can at the time. I really do believe that for some autistics, school can cause more harm than good.. I know with my son, plenty of space and time to heal and get over it all was the only thing that worked . He is now as happy as he can be, so things can improve , x

Edited June 16, 2009 by lisac

[szxmum]

Bid, Nellie, Lisac - thankyou so much for taking the time to reply and share your stories <'> (Alexmum2, I haven't forgotten you but I want to respond to you seperately)

 

You have all certainly have made me feel that there is light at the end of the tunnel. I know we have made the right decision for ds with taking him out of school and me being at home. We are learning to take one day at a time (both of us ). Ds is also sleeping lots and I guess its what he needs. I have started off with two very simple steps - I get him up at 8 o'clock, and he gets up, washed and dressed, ready for the day (sometimes he will go back to bed in the day for a couple of hours, sometimes he doesn't). As a family we all go to bed around 11.30 / midnight and he is always more than happy to go to bed. He seems to fall asleep quickly and sleeps far better than he ever did when he was at school - it says a lot, doesn't it? The other thing that we do is go for a short walk after lunch, just 10 minutes or so and he seems to enjoy getting out the house. So yes, softly, softly one day at a time.

 

Thanks again for your support guys - I've said it before but it makes such a difference to know that you are not alone and that others have had similar experiences <'> ><

[lisac]

szxmum, it sounds as if you are doing exactly the right thing at the moment. By taking all the pressure and stresses off, allowing him just to be, he will become more relaxed and happier. Sometimes 'safety' has to be enough. Ive learnt not to expect too much, take on day at a time, and just go at his pace, x

[smiley1590]

i can personally relate to your son's experience i myself had major depressive spells in school try self-harm in class with pencilcase equipment had to be taken off me for own safety breaking down into flood of tears anger confusion frustration whole different range of negative firework explodes of emotions -meltdown to where reached breaking point couldn't cope properly with 'normal ' daily lesson so another timetable was set u by LS teacher to help reduce stress and anxiety along with depression! id walk out lesson had do my exams (GCSE'S) in seperate room to others this kind of tips helped me get by!

 

without them nearly DIDN'T sit any i was that close to that mark where had pull out but managed to do basic GCSE'S n passed each with some grade so that's something! just need understanding staff and school to pull you through and talk through things work as team all together! i now done 3 years at mainstream college and course and this year passed A * so it can WORK OUT IN TIME to be positive steps forward even though feels nightmare like NEVER going to end get better and JUST STOP! but keeping working in baby steps take it at his level and pace gently and slowly! and keep him informed each decision made about him and his life!

 

hope sharing this with you helped in small way! feel comfort and not SO isolated confused and stressed! your son like so many others going through similiar things! keep fighting strong! make sure support in place that right for him!

 

take care

good luck with eveything

keep strong as possible he needs you more than ever!

XKLX

[szxmum]

Just reading your post makes me wonder if I am putting my son through a night mare., and would I be better of taking him out of secondary school now rather that wait till he has a nervous break down.

He has had a very difficult time so far(he is in yr7) so much so that our last visit to Camhs revealed he was suffering from depression. I know that when he has to go back after the holidays in September he will be distroyed.

He has only one friend at the school but only sees her during lunch breaks and during 3 lesson periods a week; the rest of the time he is on his own.

He hates walking into lessons because he says that he dreads not finding a table where he can sit by himself because if he has to sit next to another pupil the rest of the class call out to the kid he is sat next to, that he sitting with the freek or retard. he feels that everyone hates him apart from this one girl who accepts him for waht he is, she however does not have a group of friends that she can introduce him to as she is a loner too. I tried to persuade my son to invite her to the cinema or for tea, but he just says she not that much of a friend just the only person that talks to him.

I feel my son's life will head the same path as yours, because even now I have difficulty persuading him out wether to swimming or bowling or any activity he just wants to sit in front of his computor.

He is not as mature as the rest of his peer group but he is a lot brighter than most of his form tutor group, i worry what to do for the best and what the future holds.

Just like to say you sound a wonderful caring understand parent and I'm sure with your support your son will blossom.

 

Hi alexmum2 - your post has been on my mind since I read it. Has your son been diagnosed? Is he receiving any support in school? My son also had a "little mother" who looked after him in years 7 & 8. Unfortunately, she left at the start of year 9 and things went downhill rapidly after that.

 

I often wonder if we had received an early diagnosis (instead of at 17) whether things would have been any different. In our area there are no Asd schools - it is mainstream inclusion or a temporary exclusion unit whose purpose is to get students back into mainstream as quickly as possible. I have often wondered if I had known, would I have home-schooled? I honestly don't know - maybe for primary but for GCSEs, that's a big ask.

 

You know your son is depressed, so I would keep watching. Is there anyone at school who you can let know that he is depressed? I was very lucky to get the support of a fantastic Nurture Group teacher in year 11 - without him ds would not have passed his GCSes. I withdrew ds twice from school - once in year 11 at Easter before his GCSEs and then finally in year 12, a month ago. On both occasions, I found I acted quickly and instinctively - there was no thought involved, it was the ONLY course of action to take.

 

Is there any way your son's school could set up a Circle of Friends or a Buddy System for your son - maybe a buddy his own age and an older buddy say in year 10 or 11. Is there anywhere he could take time out? My son's school had a Nurture Group based in a mobile classroom that was set out like a front room and kitchen. Ds had an open pass to go there on any day, at any time. He never joined in any of the activities, they used to play cards or cook amongst other things, but he liked the environment and it gave him a place to go at breaks, lunchtimes, during PE, German and DT (he failed those 3 GCSes by the way but passed 6 others, plus a BTEC in IT - now there's a surprise ). I think the earlier these systems are in place, the more successful they can be. For my son, year 11 was too late but they may just be useful for your son in year 7 so I would certainly be pushing for support for him now.

 

Good luck <'>

[szxmum]

i can personally relate to your son's experience i myself had major depressive spells in school try self-harm in class with pencilcase equipment had to be taken off me for own safety breaking down into flood of tears anger confusion frustration whole different range of negative firework explodes of emotions -meltdown to where reached breaking point couldn't cope properly with 'normal ' daily lesson so another timetable was set u by LS teacher to help reduce stress and anxiety along with depression! id walk out lesson had do my exams (GCSE'S) in seperate room to others this kind of tips helped me get by!

 

without them nearly DIDN'T sit any i was that close to that mark where had pull out but managed to do basic GCSE'S n passed each with some grade so that's something! just need understanding staff and school to pull you through and talk through things work as team all together! i now done 3 years at mainstream college and course and this year passed A * so it can WORK OUT IN TIME to be positive steps forward even though feels nightmare like NEVER going to end get better and JUST STOP! but keeping working in baby steps take it at his level and pace gently and slowly! and keep him informed each decision made about him and his life!

 

hope sharing this with you helped in small way! feel comfort and not SO isolated confused and stressed! your son like so many others going through similiar things! keep fighting strong! make sure support in place that right for him!

 

take care

good luck with eveything

keep strong as possible he needs you more than ever!

XKLX

 

 

smiley - you are an angel. Thanks for your post xxx

[frogslegs]

I have been reading this thread with great interest as my son is currently in year 5 so we are visiting the local secondary schools and I am in despair. They are all massive schools (between 1400 and 1700 students) and I cannot see my son coping there when he is currently not coping emotionally with the primary which has 250 students. I am looking at every options possible which includes home education and another one is to go and live somewhere where schools are smaller. I worry about him having to walk from school on his own, he finds the noise in the classroom and disruptive children impossible to cope with. He feels that everyone is talking about him. Whether this is true or whether it is in his head I am not sure. He comes out of school emotionally spent every day currently. Home education scares me, and moving elsewhere is a massive hassle. My husband and myself seem to have the same conversations again and again without any valid option. It is seriously scary.

[alexmum2]

szx mum

Yes he is statemented and has 25 hours he goes to learning support centre (which is within the school) during break and lunch were like your son he is happy togo but doesn't take part in anything the other kids are doing unless he has his friend there and they go on the computors. His school did arrange a buddy for him ( a boy in his year) but this didn't work out very well as they kept arguing and my son wasn't keen on this boy.

They are now trying to organise a social club which will be for an hour and a half during lesson time but as yet they haven't had any response from some of the parents of the children they have approached I think this may be a none starter; his friend is the only one who at the moment has joined.

His school keep trying to get him to go out in the play ground during the warm weather but he finds this too intimidating especially if he doen't have his friend with him(she doesn't stay with him all the time)

There is only 1 moderate learning difficulties school near by but there are several special schools which cater for asd kids in the county but they are some distance away. I have thought about home ed more and more just lately but feel that I would not be able to keep him track and posably we would argue a lot if he were to refuse to do any studying but I would rather this than see him made ill over going to school. Just reading your post makes me feel I am not on my own as with the other post I've read and that in it's self is a great help.

[purplehaze]

Hi alexmum2-I just wanted to say my son has struggled in secondary school with a statement and we have had lots of different problems over the years (he is 15 now). My son started to go to a SEN school for one lesson a week and by chance I found out about an outreach programme they do which is ideal for children like my son who can't handle a big school (only at most 8 children).

 

Maybe you could try to see if any of the SEN schools have anything like this or phone up the local authority and ask. There may be more on offer for your son than you think-it's just a shame no one tells you!

 

If I could go back I would have never put my son in this mainstream school and would have home schooled him. I'm choosing well-being over GCSE's and hoping his self-esteem will improve.

 

 

SZXmum-just wanted to say it sounds like just what your son needs-some time out. XXX

[NobbyNobbs]

I appreciate that he needs time to "heal" - secondary school has cost him a lot in terms of his mental well-being. From my reading, I see that he also needs time to mature socially or at least time to learn how to act like an adult. But I have to be honest, I'm finding this difficult (probably more so than him, he is just happy that he no longer has to deal with school). He has stepped out the "normal" or expected pattern of development. Nobody can say to me eg in 3 years, 5 years, 10 years ds will be ready to step back into society - go to college, get a job, get a girlfriend / house / family. I don't know what his future holds, I have lost all the "normal" points of reference and it is hard.

i struggled with secondary school a lot (i was undiagnosed) i had something near a nervous breakdown when i was in year 8, i got cold after cold, and one day just didn't get up out of bed. i had horrible headaches all the time (i could only lie in a darkened room and listen to audio tapes of kids stories for 3 months! i gradually got back to school, part time building up to full time. then in year 11 i had another attack and one day just couldln't walk into class. fortunatelyl my aunt taught at the school and one of the teachers took me to her and she could see i needed to go home, and walked out the door with me, despite the office shouting that i didn't have permission to leave and she couldn't take me. i never went back to that school properly, eventually i did a little work in the library, sat my GCSEs in a room on my own and we moved house. i missed the first year of sizth form, did my A levels in one year in year 13 after failing all my AS exams due to not attending... and went straight on to university, had to leave in second year because i couldn't cope... went back and tried again the next year, and this year (5 years of uni) i quit altogether after even them supporting me studying from home failed (by that point i was on the way to ASD diagnosis).

 

i'm very thankful my parents are letting me take it slowly, to start to find my way in the world after the education nightmare. i've just got an interview for a part time job 15 hours a week. they expect me to do a 'normal' day, and my mom takes me out with her wherever she goes so i dont get isolated. i'm a leader at my local churches sunday school now and having a lot of fun with that.

 

perhaps you couldl help your son find a very low-pressure volunteer job. that way there are no direct consequences if he can't cope, but it will give him something to use his mind and occupy his day. it all takes a lot of time, and naturallyl being far more immature than our age is a problem. my mom also helps out at sunday school, so she can help me to talk to the other people, but i'm taking a bigger and bigger role and now do all the paperwork, lots of the planning and run a session every 3 weeks. in some ways mental immaturity is a help in this area, at least for me, because i dont mind my mom helping me

[szxmum]

i struggled with secondary school a lot (i was undiagnosed) i had something near a nervous breakdown when i was in year 8, i got cold after cold, and one day just didn't get up out of bed. i had horrible headaches all the time (i could only lie in a darkened room and listen to audio tapes of kids stories for 3 months! i gradually got back to school, part time building up to full time. then in year 11 i had another attack and one day just couldln't walk into class. fortunatelyl my aunt taught at the school and one of the teachers took me to her and she could see i needed to go home, and walked out the door with me, despite the office shouting that i didn't have permission to leave and she couldn't take me. i never went back to that school properly, eventually i did a little work in the library, sat my GCSEs in a room on my own and we moved house. i missed the first year of sizth form, did my A levels in one year in year 13 after failing all my AS exams due to not attending... and went straight on to university, had to leave in second year because i couldn't cope... went back and tried again the next year, and this year (5 years of uni) i quit altogether after even them supporting me studying from home failed (by that point i was on the way to ASD diagnosis).

 

i'm very thankful my parents are letting me take it slowly, to start to find my way in the world after the education nightmare. i've just got an interview for a part time job 15 hours a week. they expect me to do a 'normal' day, and my mom takes me out with her wherever she goes so i dont get isolated. i'm a leader at my local churches sunday school now and having a lot of fun with that.

 

perhaps you couldl help your son find a very low-pressure volunteer job. that way there are no direct consequences if he can't cope, but it will give him something to use his mind and occupy his day. it all takes a lot of time, and naturallyl being far more immature than our age is a problem. my mom also helps out at sunday school, so she can help me to talk to the other people, but i'm taking a bigger and bigger role and now do all the paperwork, lots of the planning and run a session every 3 weeks. in some ways mental immaturity is a help in this area, at least for me, because i dont mind my mom helping me

 

 

 

Thank you for sharing your story. I just want to say that I think you have been incredible to battle on for so long with the education system; well done for the steps you have taken and good luck for your job interview. Your Mum must be very, very proud of you - I know I would be. <'> <'>

 

The reason that we took ds out of school in year 12 was because we could see the future panning out exactly as you have described. I guess the only difference between your story and my ds is that we hit our final "could not cope" moment 7 years earlier.

 

Your story and all the others that have been shared above just go to show how important early diagnosis is. I appreciate that diagnosis does not provide all the anwers but at least as a parent it raises your awareness - you'll know to take note of the warning signs and at least try not lurch unwittingly from crisis to crisis.

Edited June 18, 2009 by szxmum

[frogslegs]

I wish that having an earlier diagnosis could help but just like you all I am having a constant battle with the education system because, and that is KEY, we do not have a statement. My son's needs are not preventing him so far from learning but they are preventing him from emotionally coping and I find those emotional needs are totally dismissed. I am getting extremely bitter. Yesterday I went to visit a local state secondary school which prides itself on its achievements. My child is bright but when I explained his needs I was basically told no statement no support. The 'every child matters' is absolute rubbish. Small schools have gradually been amalgamated into huge factory type learning centres. These places do not suit our children. Their needs are such that they need to attend a specialist units but they are square pegs for these factory type learning centres. When I read your statements I can foresee what our life is going to be like for the next 6 years and it feels like we are on a complete slippery slope. The needs of severely affected children seem to be more or less addressed but if you are an in-between then there is a huge loophole and our options are incredibly limited. It is true that having an earlier diagnosis gives us awareness but it does not give us solutions.

[szxmum]

It is true that having an earlier diagnosis gives us awareness but it does not give us solutions.

 

 

<'> Frogslegs

 

I completely agree with you about secondary schools. My ds attended a school with 1400 pupils and it was like bashing a square peg into a round whole, he just did not fit.

 

I am sorry if my post gave the impression that I thought an early diagnosis was the answer to everything, that was not my intention and it is certainly not the way I think. I read all the stories of people who trying to get support for their children and it makes me sad and angry. But at least awareness is increasing and in some areas support and understanding is improving. My hope is that this good practise will spread and spread and there will be less and less stories like the ones on this thread.

 

 

 

[purplehaze]

Hi, As I have said my son has been failing secondary school for years and has a statement for 22 hrs. He has been offered a place in an outreach programme by the SEN school my son goes to for one lesson a week. He went for a trial today and came home with positive things to say-I haven't heard any positive things about education from him for years. It was 1:1 just him and the teacher no other children were in the classroom and next week they are taking him to something called skids which is bikes and machanics etc.

 

There can be hope- but it's a shame most parents have to fight for the right support for their children. It was just chance I found out about this and now I have to have a meeting as the mainstream school as usual for us are making things hard.

 

Parents should try to get together in certain areas and run their own outreach programmes with support from local charities etc.

 

Someone told me that you can e-mail the health department any concerns you have about your children's mental health as they are trying to find out how many people want/need help and support. Also phone your local authority and ask what support is on offer-outreach/units/home teaching etc. Phone the children's disability team and ask for support.

 

I totally agree an early DX is so important-I work with children (early years 2 1/2 plus) on the spectrum and they have so much support put in place so they can achieve and we all work together-but it seems to dissapear in a lot of secondary mainstream schools and even primary-I have been shocked by some of the professionals I have had transition reviews with. Don't get me wrong there are some great schools out there.

 

I'm so fed up with the lack of support we have had over the years and there seems to be many families in similar situations. The government are losing money-they may have to support mental health issues from teenagers right through to adult life but also other family members who can not cope any more. If they put the RIGHT support in place early on then they should have growing children/adults who have higher self-esteem and well-being and who can cope with the world because they have the right support.

 

The system is failing lots of children and it needs to STOP. IMHO

[frogslegs]

szxmum no problem. I am so so frustrated. I want to find a solution for DS BEFORE we get to this sort of situation that results in mental health issues. I cannot resign myself to put my son in a school that will not look after him properly because he deserves better! 'The Government's aim is for every child, whatever their background or their circumstances, to have the support they need to:be healthy, stay safe, enjoy and achieve, make a positive contribution and achieve economic well-being'. I don't think children like ours are able to achieve fully.

 

 

I am sorry if my post gave the impression