Worried and in need of advice please.

Hi  Its so sad that so many of us have had to go through this - your story is very similar to ours except our son only lasted one year in secondary school, during that year we discovered he was probably ASD (no more or less confirmed) but we had to go to a private counsellor to get this suggestion - despite the school supposedly having an ASD unit!!!

To cut a very very long story short we were referred to camhs, our son is being treated for depression and anxiety, his doctor recommended we remove him from the school and he is currently getting home tuition from the LA.  We pressed the school to get a statement of special needs for him which takes 26 weeks.  We now have that and almost have a place at a special school (I will not believe it until it happens_ but things are looking like they are heading that way),, I just hope that this will be what he needs to make his life better and more positive all round.

My advice to you would be to take Tim to see your GP, get him referred to camhs.  Also you could see if your doctor or camhs might recommend that he not attend school if it is making him anxious - I cannot stress enough I wish we had removed our son earlier - it might have made all the difference to his mental health and maybe he wouldn't now be on two types of medication.  Your son is entitled to an education though, don't let them off the hook - press for a home tutor -  you will probably have to fight for this, we went to the top - Head of Inclusion at the LA who was fantastic.  Apply for a statement of special needs and have a look round at specialist ASD schools - I believe that other than home ed, this is the best bet.  But more than anything else I believe that he should not be going to that school!  Best thing we have done in the whole of the last year was to remove our son from the school.

good luck - you are not alone

Artisan38, You really need to copy your post into a new thread as this one is really about Tim'sMom's issues. You will get a more focused response.  

OK so this was supposed to be a reply to Tim's Mum and I have inadvertantly started a new post.

Apologies

Tracey

School DOES NOT WORK for children on the Autistic Spectrum unless you are fortunate to find a REALLY knowledgeable and understanding SEN teacher you will be battling for him until the day he leaves.

At the age of 8 my son was suicidal from the stress of having to conform to what the school thought was necessary and although his behaviour was good there, he was academically challenged and the meltdowns we had to endure at home were horrendous.

That was 9 years ago - we took him out of school and home educated him and we did so using an Autonomous Education method.  It does not involve ANY LESSONS and is completely child led meaning the child gets to learn what he wants when he wants in his own time.  He is now 17, has no GCSE's but has been admitted to college on a level 2 Art and Design Course which although difficult for him with regard to social relationships, he is managing to cope with and achieve a reasonable grade.

There is also a high proportion of children with Special Needs in the home ed community and so your son would actually spend time with people who were more disposed to be tolerant and understanding.

There are support and social groups all over the country as well as various support forums for Autonomous Education, Single Parent home educators and local activity groups. 

If you would like to find out more just PM me and let me know where you are and I can put you in touch with your local group.

Tracey ADI

who now specialises in teaching people with ASD to learn to drive

Hi

I'm new to the community so I hope I'm posting this in the right place? apologies if it's not.  Basically my 10yr old daughter has been diagnosed with Asperger's and despite knowing that she was an aspie since she was very little myself and my ex (her dad) are struggling to deal with the issue of her hiding toys.  I know that may not sound like an 'issue' but let me explain...

My daughter has 3 younger siblings, 1 is my younger daughter and the other 2 are her dad's children with his partner that he has now.  For a number of years i have struggled to get my child to share, toys in particular, but eventually I thought I had a system that worked, or at least worked to a point where no one had a breakdown, myself included!  I had sat down with my daughter after another meltdown over sharing and talked to her about using a timer to help each of us 'share', for example, if she was playing with a toy and her sister wanted it, then I would set the timer for an agreed time (maybe 5/10 minutes depending on the toy) once the timer went off then her sister would hand over the toy to her and the timer would be set again for an equal amount of time.  Therefore allowing both girls a chance to play with the chosen toy, my daughter understood this and co-operated on almost all occasions.  

In the event that she didn't wait for the timer to go off, and where she would snatch the toy away, I would remove the toy altogether and explain that she couldn't have it because she wasn't sharing like we had talked about.  All of which was part of our original talk, and it would be mentioned every time I needed to use the timer.  So I would clearly explain what was expected in each case.  Again she understood, and so did my youngest.  

However, she has been living with her dad, his partner and their two children aged 3yrs and the other little one is 5 months, since last year.  This came about for numerous reasons one of which was because I was struggling with my own health and didn't feel well enough to look after her,  I needed a break! unfortunately it has descended into a nightmare for everyone.  My daughter is having more meltdowns, thrashing her room, punching walls, punching herself! lashing out at everyone and everything and has taken to hiding her 3yr old sisters toys (some of which she has broken)  this has caused her step-mother to explode at her on many occasions and just this weekend packed her bags and left taking her two children with her.  

I have tried explaining about the timer technique, but don't think they see any merit in it, and basically her dad said that this behavior is just her being spiteful, that it has nothing to do with Aspergers.  They have also noticed other things have gone missing in the house and despite my daughter's denial at taking them (maybe she did? maybe she didn't? I really don't know) they have now turned around and said to her that anytime something goes missing she will be the first one they'll ask.  

So now she's anxious about being blamed for everything, and doesn't feel like she is being listened to.  When I asked her about the issue over taking the toys she admitted that she took them and said she did it because everytime she attempts to play with one, her sister (who is only 3) snatches the toy away, and step-mum tells my daughter to just leave her to play with it.  This frustrates my daughter, to the point where it builds up and up and then she explodes! over what seems like nothing to them but is obviously a major issue for her in her head.  I hope no one thinks I'm being silly in asking for advice over this, even though it sounds like a small thing, it's turned into a major issue.  I just don't know how else to deal with it?

Step-mum has since returned but on a 'lets see how it goes basis' again i feel that this is putting my daughter under pressure to 'behave' or else!  Step-mum also said that she would throw out my daughters ipod after she smashes it on the floor, she made a show of doing this in front of my daughter (as punishment for hiding the toys), but then decided not to throw it away (however both step-mum and her dad allowed my child to believe it had been destroyed) this completely messed with her head, and she was upset over the prospect of not having it so she could text me/facetime me.  I feel like the issue has been blown all out of proportion, or am I getting that wrong? I want to help my child but don't know how? and the issue is only getting worse the longer it's left, help!    

any advice would be great, just another perspective on it would be great also, thanks in advance 

Go back to basics, familiar ground, even if that means home schooling

thankyou all so much for your replies you all have given me much needed advice and i am now looking into home schooling. I would love to keep Tim in school so he doesnt appear 'different' to his friends but it seems like i have been guilty too of  being unable to accept that Tim can't cope like the other children. But thats only because i wanted Tim to have the same opportunities as his older brother, who is now in a full time office job after doing 2 years in college.

It's so difficult, it breaks my heart. I'm also fed up of comments like '' oh you molly coddle him, if it was anyone else you would just tell them to get on with it'' and '' he knows what he's doing''

I feel like im on trial trying to prove my son has difficulties, i even find myself doubting myself. But i am going to be strong for Tim. I'm not going to give up. I'm definately getting advice off all the authorities for the best way forward, and i wont settle until my son is geniunly  understood.

In the meantime i will continue supporting Tim at home, seeking advice and knowledge off other parents and proffesionals.

Thankyou all very much, it means a lot to know we are not alone xxx

Hi Sally,

I think Tim would be better off with home tutoring and not going to school.  He is right, they do not understand, and school is a very scary place.  They are not really capable of listening. You may as well have spoken in a foreign language.  What the teacher eventually saw was Tim's distress but it doesn't mean she, or any of the other staff, know how to make school appropriate for him.

If they could start with home tutors in maths and English. You will probably need to talk to the tutor and tell him or her what situations would be hard for Tim. And discuss with Tim where he would be happy to have these sessions.  He would need to meet the tutor first and for a short period.

Perhaps discuss with Tim what subjects he would like to continue and which he would like to drop.  I really don't think the school can cope with Tim, and that is not a critisism of Tim but of the school system.

hi sally I was in the same situation with my son adrian just keep pushing the school and remember no one knows tim better than you have you thought of contacting the nas and ask about how to get tim an advocate as I think that sometimes having someone other than mum to speak on tim's behalf and get his fears and frustrations across can have a bit of an impact , adrian still at times becomes anxious and nervous but is now in third year in secondary we are in scotland so the years are different but he is doing great and loves school now but that has taken hard work and alot of tears and sleepless nights he is doing brill academically with support and is picking standard grades which i never thought would happen so just stay strong and if you ever need to let off steam just drop me a message and i'm hear to listen its not easy sally but it can get better x kathleen x

Personally I would photocopy the letter from the psychiatrist with the diagnosis and take it in to school and give one copy to the Head and one to the Special Needs teacher who sounds like an idiot. I'm sure it's already in Tim's records, but sometimes these things get buried. The school has an obligation to provide appropriate care - is it time to go and see the Governors? 

The reason Tim isn't 'behaving like he's autistic' in class is because he's learned a lot of skills and is working very hard to use them to appear NT. 

Is there a local NAS parents or family group in your area that you can go to and get some solidarity? Plus, local parents will have lots of suggestions on what has worked for them in your area - I know provision differs across the country. And perhaps Tim can meet some other youngsters who are autistic so he doesn't feel alone. 

Also, if Tim is profoundly distressed, would counselling help him to deal with his anxiety and process his thoughts? You said he was diagnosed by a psychiatrist - so was my daughter and when the doctor gave his diagnosis he signed her off but explained 'if your daughter has mental health issues then you can bring her back'. I'm thinking about how to address the acute problems Tim is having right now - a psychiatrist or counsellor would be able to explain to him that he's not alone and give him chance to vent. 

Are there any other services in your area? What about your local education authority or council? Do the council have an Autism officer or is there a special needs inclusion team in the LEA? Talk to them and see if they can offer any help - you might find that Tim is entitled to some 1:1 time and that could help him.

Are there any other agencies you can call in? Educational psychology, occupational therapy? I'm in Wales and when I refused to sign off on what I thought was a lazy and slapdash IEP, I demanded that my daughter be assessed by the Ed Psych and the school had to get my kiddo assessed. (She's been diagnosed with Aspergers and has been on the SEN register for 2 years but had never seen the Ed Psych because she's no trouble.)

Because of the social aspects and the fact that Tim has probably made some friends in school, and also because out in the big world where our kids are going to have to go and earn a living eventually, I think it's best if we can keep our kids stay in school  if at all possible to learn the life skills they are going to need. (IMHO - your mileage may vary etc.) Plus, if you educate the school, you make it easier for the next kid. 

Hiya 

Has Tim been reffered to your local CAMHS team by either his Doctor or The School? Im guessing the School havent, they dont seem competent enough!!! If not this NEEDS to be your next step. I went through exactly what your going through only my son was in Primary School at the time. (Hes now in High School and being treated like a Human Being). The teachers Pretend they know how to deal with additional needs, i think they see it as a weakness if they say they dont. There needs to be more training and awareness for them. But first you need to push Tims G.P. to get him referred to CAMHS (If you havent already). If you have then you need to be getting on to the CAMHS teams back for some help and Support...Its a classic case of the authorities brushing it under the carpet, You need to be constantly ringing until they get fed up with you and leave there cumfy chairs to deal with it. I hope ive sort of helped. Good luck 

Hi I went through hell for 6 years putting my son into mainstream - false promises, nodding heads, but no real idea of autism. to cut a long stressful story short it ended when he melted down after school and tried to run under a bus. We had no life.

the teachers also thought i was lying because he was 'fine' at school. Fine meant copying work from others and desperatly trying to fit in causing after school explosions.

Thats the point when I had enough - the school did not meet my sons needs. I contacted the council and found out where there was a school that has autism knowledge.he was moved with no fuss to an enhanced resource school and our life changed.

Our life continues to improve - his teachers understand him and put things in place without me asking.

They will cope with a change in school and often very positively if its the right school. 

I hope i help to give you the confidence to move him.

thankyou both for your replies. I have just had a phone call from school. I am so upset, this is seriously making me ill. And all i want is for them to understand Tim. The teacher in school (head of special needs) has just telephoned me and stated '' Tim can't be autistic because all his teachers are saying he doesnt display signs of it in his work, or behaviour'' even tho he had a major meltdown in front of her yesterday.. I have a letter in front of me which states..     '' there is no doubt that Timothy shows a number of features which would be consistent with a diagnoses in the autistic spectrum. It is also clear that Timothy is of low academic ability has low scores on verbal comprehension and has a very slow processing speed. This pattern would certainly explain why tim finds it difficult to understand instructions and that he misunderstands the comments of others. He is likely to find it particularly difficult within the social setting where the rules are more complex. It is also likely that he becomes angry when he does not have the means to express himself clearly as well as his difficulty fully understanding what others are saying to him.

Timothy would benefit by being understood as having social and communication difficulties as seen in autism. Strategies designed for use in young people with autism maybe helpfull to Tim. Planning for Timothy's future beyond school will need to take this assessment into account.''

This is a report i received off the child psychiatrist that was assessing Tim for over 2 years, HOW can a teacher tell me my son is behaving badly due to some underlying trigger but he is not autistic. I am absolutely gutted, and feel like they are blaming me for the way Tim is feeling..

Im at a loss as to what to do now. I have contacted the parent partnership for advice and im waiting for their reply. Im so so upset..

hi

My children have been withdrawn from both special and mainstream, i trusted schools who piled on the pressure refused to acknowledge difficulties, and caused massive emotional distress to my kids,who refused school, low and behold only then when the damage was done and its all too late to begin to acknowledge what id been telling them all along

my eldest daughter required councelling when she was in school, since shes been removed shes like a different girl no longer requres councelling and is educationally progressing much better,

My youngest daughter was having meltdowns at a ridiculous rate due to nasty teachers who frankly arent fit to be near children, and now is again a happy little girl.

i think that in itself speaks volumes

if you remove your son because of emotionall distress the authority should help with home educating your child, ive made my authority help financially and with resources etc., after all its their doing.

Hi Sally,

 sorry about the tough time you and your son are having.  Sounds as though you are doing all the right thinngs for him, well done you on going back to the school with regards the talk to the class.  You are standing up for your son brilliantly.

It does make you wonder if the school really listen at all, i have had a few talks like that.  Lots of nods of understanding and lists of what they will do, you come out feeling positive only to be let down a while later.   

My son went into school (reluctantly) very stressed today as he had to talk about his favourite book in front of the class for world book day.  i was told by the school they felt it good to push the boundaries every once in a while, i guess that is what they are doing today, that is assuming they have even remembered my son has Aspergers as they have had three different teachers in the last three months !

I often wonder what i would do if my sons anxiety got worse due to school and i always conclude with i would home school him.  I accept it is really important to try mainstream schooling first to aid social skills, but i think too much stress would do more harm than good forcing them to school.  Talk to your son, if he can assure you he would do the work at home and possibly sign him up for club of some sort for the social interaction.  I can imagine the relief for your son would be immense.

I have read comments on successfully home schooling Aspies on this site and also comments from Aspies who had a hard time at school and on leaving admitting they wished they had been home schooled.  It is not for everyone and may not always be easy but i think here it sounds to me like your best option, talk to your son. 

take care