New and not sure how much I can cope with

[KathyM]

Hi everyone

 

My name is Kathy and I live with my partner and 3 children in West Yorkshire. I have joined for advice for my middle son, Dan, who is 13 and is still waiting for a diagnosis.

 

I don't know where to start. Since Dan was born he has been "different", shy, low self esteem, and has had learning difficulties which although not severe have ranged from him needing speech therapy as a toddler and older child (briefly) to him having been assessed as "dyslexic" at the age of 8 after much pushing by us. At 2 we asked whether Dan was autistic as he was slow to speak, couldn't maintain eye contact and used to bite (hard) to avoid physical contact. We were told we were being silly. Dan started collecting bottle tops at age 8 (hiding them in his pillow case), a phase that passed quickly but which the school nurse said definitely wasn't a sign of ASD/Aspergers. Since then we've pushed for him to be assessed, with school only interested in what affects his actual learning rather than social issues. School have focused on his low self esteem. We asked again last year (after a serious incident at school) and the school nurse saw us again, saying she was the only way through to Hillbrook/CAMHS and stating again that she wouldn't refer him as she felt he was just being a boy and his issues weren't specific to ASD. Since starting secondary Dan has had no extra help in lessons at all. Since he was young he has sporadically run away, hidden, balled up emotionally and physically and acted inappropriately, most commonly when faced with any sort of authority.

 

More recently Dan has started taking himself out of lessons - just getting up and walking to "remove" to sit alone. He tells me that in lessons he switches off sometimes because it makes him calmer. His main issues are when faced with substitute teachers or changes to usual schedules. He comes home with writing all over his arms and sometimes face. He has also sworn at teachers, been led into doing dangerous things when at school (by kids taking advantage) and has got himself a reputation. At home things are generally ok as I can read him, but I avoid telling him off as he will shut off for hours or run away. This is obviously unfair on the others. Dan takes things very literally, and struggles to understand and "obey" social rules. For example when he got a yellow card for asking why he wasn't allowed his hands in his pockets - he genuinely didn't understand. He has started swearing at teachers.

 

Last weekend I got a phonecall from the school's SENCO who said she had assessed him in school for his IEP again. She said he has literally no working auditory memory and very poor fine motor skills. She says this coupled with her discussions with teachers pushed her to ask for a referral to Hillbrook/CAMHS for ASD testing, and for referral to the Ed Psych. However, when I received a copy of this report, it was dated for November 2010 and the school nurse yet again says we have to start again with "information gathering" rather than a referral. Dan and I are meeting a primary mental health worker on 9th March with the school nurse for the same type of interview we've had 3 times now and has so far led to nothing.

 

To top things off, the "Remove Coordinator" has made things very difficult at school now. I received a letter from her stating Dan had had 5 "yellow cards" for bad behaviour and this was to result in a detention after school for the day before they sent the letter. When I rang and explained how we'd only just received the letter, she was rude and said that Dan "Had no respect or he'd have turned up" - he wasn't aware of it. I stated that perhaps the system of only getting in touch with me after 5 yellow cards (which turned out to be 8) might not work and could they please ring me when he was in trouble, she said "If we did that for Dan, we'd never be off the phone - he is so bad he's always in trouble, he's AWFUL". Obviously I found this alarming as noone had mentioned this, and asked to speak to his year head - she refused to put me through so I rang back directly. The year head was quite angry that the Remove Coordinator had said this and promised to have words as the yellow cards were being ignored in Dan's case because they strongly believe he has Asperger's. Later the same day I got a sniggering phonecall from the Remove Coordinator saying she had Dan with her and he'd made some foul comments about myself and his teachers (stating I'd sent him in to call them sexual swearwords). She seemed to find this very funny, sniggering and laughing and adding further rude words to the list. This turned out to be entirely false when we went straight to the school - Dan was in PE and hadn't even been in her care. When I explained what had happened to the Year Head again, she has had to take disciplinary measures against this lady as her claims were entirely false and (the part we were unaware of) she is not allowed to discuss pupils during school time over the phone as she has children in her presence and it breaks confidentiality.

 

Anyway, that's the level of week we've had - I am recovering from spinal surgery and have found it very tough. To top it off, I cut myself in the kitchen tonight, dealing with it badly and being sarcastic, saying "Thanks a bunch for jumping to my aid, boys" to my sons as they continued on the Xbox while I bled. This led to Dan calling me a "Stupid b%%ch" and storming upstairs, and now him telling my partner that it's not his fault if I deserve to get called that. I know I shouldn't be taking it personally but it's upset me so much that I'm fighting his corner to the detriment of the other children here and he doesn't seem to care one bit, in fact he seems so cold and uncaring.

 

I have been in touch with BADASG as they have an informal support group (SKAT?) meeting in Bradford the night before Dan's appointment, but if anyone can help or advise us what to do I would really appreciate the help. I have no clue what I'm doing and I'm obviously failing.

 

Sorry for the great long intro.

 

Kathy

xx

[KathyM]

D'you know, when you write out War and Peace on your children, you inevitably remember more you want to add afterwards. I forgot to say that Dan rocks from foot to foot a lot and still struggles with eye contact.

[RainbowsButterflies]

Not really sure what to say other than that I hope someone offers you some help and support soon

[zeldasmum]

I am quite new to this and just going through the dx process with my son who is nearly 7. There are lots of people on here who really know their stuff and will deffo be along to offer you good advice.

 

I just wanted to send big hugs and to comment on what an unproffesional nasty piece of work the remove co-ord is , she should be out of a job if that is her way of working.

 

xx

[KathyM]

Thanks all of you for the replies and the welcome. I really appreciate it. Dan has come downstairs, apologised and has had a talk with me (over a hot bowl of soup). He is tired and I asked him if maybe we both felt like we were walking on eggshells at the moment. At first he thought this was ever so funny ("You can't walk on eggshells, they'd break!") but on explaining things further he said he pretty much always feels like that, especially at school. We talked about Aspergers, including the pronunciation which neither of us were sure on. He prefers "As-perjers" to "Ass-burgers" for obvious reasons (which I hadn't thought of personally, but he thought was hilarious).

[dm2010]

Hmm.

That old chestnut 'bad teachers' comes to mind again.

 

I can say this because my parents were teaching professionals, which this lot obviously are not.

 

The Remove Coordinator's actions if proven are gross misconduct possibly resulting in dismissal. After this breach of trust I think you would be quite entitled to require all disciplinary allegations to be agreed with you before action is taken, and that individual if not sacked never speaks to your son again.

 

Also an apology from the school because they are responsible for all actions of their staff. And don't stand for slander over the phone either.

The school also appears to have a serious problem distinguishing between what is important and what is not. Hands in pockets !? They must be bored.

 

But do not tolerate bad behaviour in the house. Aspies are quite capable of deciding to be polite 100% of the time not just when it suits them.

[kathyanne]

Hi, how terrible, I came on here new myself with a similar story, i have been fighting the system lately for my son, and getting nowhere. he did very similar things, i hated him as a teenager, he was so nasty to us all, everyone said that he was a bad one and just the way he was, from 16-19 i tried to get him diagnsosed but nothing , he wouldnt go to school in the end he hated it so much and curled up into his own little dark life. grrrrrrrrrrr i am so sick and frustrated, now at 21 we are making slight lee way and he may get assesed, he has seen 1 junior doctor and is due to see a senior phsch at some point.. when>>i dont know.his social worker never sees him because hes too busy ;( i feel your frustration i really do, but dont give in. James is my boy and i wont give in until im listned too and hes assesed and gets the things hes entitled too. Its true, you know your child better than them and gutt instinct says a lot, stick with it, the national autistic society give great advice and help , i am liazing with them at the moment re help and support groups... try them. good luck... your not on your own, ul get there in the end. kat

[smartloobylou]

im sorry you are experiencing this, we've just had DS diagnosed at 9 years old, his behaviour rapidly deteriorated last year and when he said his head was telling him to 'do things' we were straight down the GPs. We got an immediate referral to Child Adolescent Mental Health Team, who, over 3 appts with psychologist and/or psychiatrist, immediatley diagnosed ASD (he had delayed speech so they did not classify Aspergers.) But then they discharged us from CAMHT and i've been left on my own to figure out what the hell to do. Anyway, i would consider this firstly as a health issue (mental health) and ask your GP for an immediate referral. Forget the school for the mo, they LEA will be next on your list for a SEN once you get the appropriate diagnosis. Good luck and keep us updated

[lindy2017]

Hi everyone

 

My name is Kathy and I live with my partner and 3 children in West Yorkshire. I have joined for advice for my middle son, Dan, who is 13 and is still waiting for a diagnosis.

 

I don't know where to start. Since Dan was born he has been "different", shy, low self esteem, and has had learning difficulties which although not severe have ranged from him needing speech therapy as a toddler and older child (briefly) to him having been assessed as "dyslexic" at the age of 8 after much pushing by us. At 2 we asked whether Dan was autistic as he was slow to speak, couldn't maintain eye contact and used to bite (hard) to avoid physical contact. We were told we were being silly. Dan started collecting bottle tops at age 8 (hiding them in his pillow case), a phase that passed quickly but which the school nurse said definitely wasn't a sign of ASD/Aspergers. Since then we've pushed for him to be assessed, with school only interested in what affects his actual learning rather than social issues. School have focused on his low self esteem. We asked again last year (after a serious incident at school) and the school nurse saw us again, saying she was the only way through to Hillbrook/CAMHS and stating again that she wouldn't refer him as she felt he was just being a boy and his issues weren't specific to ASD. Since starting secondary Dan has had no extra help in lessons at all. Since he was young he has sporadically run away, hidden, balled up emotionally and physically and acted inappropriately, most commonly when faced with any sort of authority.

 

More recently Dan has started taking himself out of lessons - just getting up and walking to "remove" to sit alone. He tells me that in lessons he switches off sometimes because it makes him calmer. His main issues are when faced with substitute teachers or changes to usual schedules. He comes home with writing all over his arms and sometimes face. He has also sworn at teachers, been led into doing dangerous things when at school (by kids taking advantage) and has got himself a reputation. At home things are generally ok as I can read him, but I avoid telling him off as he will shut off for hours or run away. This is obviously unfair on the others. Dan takes things very literally, and struggles to understand and "obey" social rules. For example when he got a yellow card for asking why he wasn't allowed his hands in his pockets - he genuinely didn't understand. He has started swearing at teachers.

 

Last weekend I got a phonecall from the school's SENCO who said she had assessed him in school for his IEP again. She said he has literally no working auditory memory and very poor fine motor skills. She says this coupled with her discussions with teachers pushed her to ask for a referral to Hillbrook/CAMHS for ASD testing, and for referral to the Ed Psych. However, when I received a copy of this report, it was dated for November 2010 and the school nurse yet again says we have to start again with "information gathering" rather than a referral. Dan and I are meeting a primary mental health worker on 9th March with the school nurse for the same type of interview we've had 3 times now and has so far led to nothing.

 

To top things off, the "Remove Coordinator" has made things very difficult at school now. I received a letter from her stating Dan had had 5 "yellow cards" for bad behaviour and this was to result in a detention after school for the day before they sent the letter. When I rang and explained how we'd only just received the letter, she was rude and said that Dan "Had no respect or he'd have turned up" - he wasn't aware of it. I stated that perhaps the system of only getting in touch with me after 5 yellow cards (which turned out to be 8) might not work and could they please ring me when he was in trouble, she said "If we did that for Dan, we'd never be off the phone - he is so bad he's always in trouble, he's AWFUL". Obviously I found this alarming as noone had mentioned this, and asked to speak to his year head - she refused to put me through so I rang back directly. The year head was quite angry that the Remove Coordinator had said this and promised to have words as the yellow cards were being ignored in Dan's case because they strongly believe he has Asperger's. Later the same day I got a sniggering phonecall from the Remove Coordinator saying she had Dan with her and he'd made some foul comments about myself and his teachers (stating I'd sent him in to call them sexual swearwords). She seemed to find this very funny, sniggering and laughing and adding further rude words to the list. This turned out to be entirely false when we went straight to the school - Dan was in PE and hadn't even been in her care. When I explained what had happened to the Year Head again, she has had to take disciplinary measures against this lady as her claims were entirely false and (the part we were unaware of) she is not allowed to discuss pupils during school time over the phone as she has children in her presence and it breaks confidentiality.

 

Anyway, that's the level of week we've had - I am recovering from spinal surgery and have found it very tough. To top it off, I cut myself in the kitchen tonight, dealing with it badly and being sarcastic, saying "Thanks a bunch for jumping to my aid, boys" to my sons as they continued on the Xbox while I bled. This led to Dan calling me a "Stupid b%%ch" and storming upstairs, and now him telling my partner that it's not his fault if I deserve to get called that. I know I shouldn't be taking it personally but it's upset me so much that I'm fighting his corner to the detriment of the other children here and he doesn't seem to care one bit, in fact he seems so cold and uncaring.

 

I have been in touch with BADASG as they have an informal support group (SKAT?) meeting in Bradford the night before Dan's appointment, but if anyone can help or advise us what to do I would really appreciate the help. I have no clue what I'm doing and I'm obviously failing.

 

Sorry for the great long intro.

 

Kathy

xx

Hi, I joined last year due to my 11 year ols son having problems being in school had to take him out last april we registered with secondary school but he gets home tutor at moment.....he finds it hard being around alot of noise lights changes....school is pleased with his work he only gets 5 subjects.....we are being assessed with CAMHS had first interview a few weeks ago waiting for the 3DI assessment.............then we might get dx..........i know how tyou feel......some days are good some not........lindy

[KathyM]

Thanks all of you for your replies and experiences, I really appreciate them. A lot of your experiences ring very true with me too.

 

I feel like I painted out Dan's behaviour as worse than it is in the heat of the moment. It is not common that Dan and I fall out over anything, probably why it upsets me so much. He is mostly a wonderful person to live with - honest, helpful, funny and often very insightful (he has a knack of seeing things from a different perspective than you expect). I'm often telling him I haven't thought of things from that perspective. Dan and I usually have quite an affinity, and while I love all 3 of my kids equally, him and I rarely fall out and he doesn't "do" the hormonal strops like his brother and sister lol. What happened last night is not common, not at home anyway, and is definitely the result of me handling things badly. There is a point where I know I have a choice to make between tough and soft mum - I hate having to rethink how I treat him and I resent having to treat him differently if I'm honest as it feels like others see it as weakness on my part (I don't resent him, I resent life for throwing this at us sometimes!). Regardless of that, he's responsible for his own behaviour, especially now he's getting older - he won't be able to act like that when he's in work and so he has to learn how to respond to that. Dan's major problem is with firm or angry authority as he finds it very hard to understand and respond to appropriately. That does mean that I am worried about dealing with things in that way though which sometimes is unavoidable. But how does a mum prepare her child for the real world if they can't cope with that?

 

As for the REmove Coordinator, I fully agree that she needs disciplining (and my choice would be for her to be sacked) but I am stuck as if I go in all guns blazing and they *don't* sack her, it will be hugely detrimental to Dan when he spends a lot of time in there. We will have to be very careful how we respond.

 

Thanks again

 

Kathy

xx

[genie]

Hello Kathy,

 

I really feel for you because I have gone through this sort of thing with my d and the school ( she is a school refuser ). I think it depends on the school. However, even though my daughters school have been helpful in the past, this all broke down recently because the head of year to which my d moved up to ( yr 11 ) was rather stuck in prehistoric times and made it perfectly clear that her personal opinion was that my d was naughty, obstructive, lazy, stupid ( though she never actuall said these words - her general attitude and other things she said in various meetings spoke volumes. All she has wanted to do of late is to issue sanction after sanction and we had to tell her that unless she could be more positive in her methods then all the progress made before ( re-integrating her into mainstream lessons and building her self esteem ) would be dashed. That's exactly what has happened and now d refuses to attend school for most of the time ( I find I can get her in in hte afternoons but really I have no idea how things are going to pan out ). Because of conflict with this one particular teacher, communication is now awkward and has more or less broken down. The deputy head of the whole school now 'deals' with me on the basis of e-mailed one liners delayed by days at a time in reply to mine. Time we just don't have.

 

I think the general attitude of schools in the main is that it is the child at fault and not the environment. Its the child that must be 'fixed' to conform to external environment and not the environment that needs adapting. However, if you stick with it, and you speak to enough people at the school, you may come accross someone a bit more forward thinking and open minded. Is dan in mainstream lessons? Do the school have a 'nurture room' facility? This proved to be invaluable for my d in earlier years. She went part time for a good while, then eventually full time. She has never done P.E at all in secondary school as this created too much anxiety. It was a case of fine tuning school life for her the whole time...so even changing places in class helped, or moving her to another class altogether..one that was quieter and where the teacher had a grip on the kids so noise was less ( that sort of thing ). Yes, I think the school thought I was an over anxious mother - but in the end I didn't care what they thought as long as I got the best environment put in place for my d. it hasn't always worked though..it is a hit and miss affair...and the teachers never really understood that this would always be a case of two steps forward and three steps back. mainstread education just does not suit alot of children and I would wager its far more than the people would care to admit. The lack of knowledge over school refusal is astounding...even amongst proffessionals I've found. If I could I would love to become involved in campaigns, - something - to educate people about this this monumental problem...I feel that the system creates so much overload in children that its no wonder at all that kids react in the way that they do.

 

You could consider asking the school about part time hours...though this is at their discretion and they don't sound too sympathetic or knowledgeable. Home ed. is another route of course ( I was just never ready to take that leap of faith though I do regret it now ).

 

I do wish you all the best with this..it sounds like a challenging situation and you just need to keep plugging away finding the right people who will support you and your son in the way that you want.

[sky]

hi -i felt i must reply to genies post regarding the quote that schools seem to blame bahaviur issues on the child rather than the enviroment surrounding the child. SO AGREE with this.having major probs with my son at school at the moment -even tho he a attends a special school.his probs have escalated recently due to moving up in ths school into a class where i believe their efforts to get my boy to "conform" to their class structure has resulted in a very anxious unhappy and increasingly aggressive boy.it is only now when camhs have been called in and we have the expertise and understanding of a brilliant lady that things are beginning t get sorted out-having gone into the class to observe .this could possibly have been avoided if time had been taken to get to know that too many demands would lead to this situation and to try to adapt rather than him having to adapt to them .

[genie]

Hi sky, unfortunately its the medical model that schools tend to go with, rather than the social model which considers environment and intereaction principles. Certainly for us, its made the issue ten times harder because not only are you dealing with school refusal on a day to day ground level, you are fighting a battle with the 'authorities' who see the child as the one with the problem. That's not to say its always been that way in my experience - there have been windows of enlightenment, but I have to say that they have become fewer for us in recent weeks. New teachers coming up I imagine are indoctrinated into this way of thinking. As are TAs. As part of my sociology degree we were on a module with some TAs who were doing degrees in child welfare/development. I was astonished at their way of thinking. Extremely condescending in their attitude with ideas about dysfunctional children that made us sociologists hair stand on end ! All in favour of 'parenting classes' for children with behavioural difficulties...as if forcing children to be 'middle class' just like them, was the absolute answer. Very blinkered, very un-holisitc and very naive. I was horrified to think that these people are the very ones dealing with those children most at risk and most in need of expert and knowledgeable help. yet it was painfully obvious that the blame was always with the parent or the child itself and that the answer was to follow conformist principles and that would make everyhing right.

 

The enlightened are few and far between; and in actual fact, even the one particular TA who has to a degree been helpful in our case...can also be very patronising and states the very obvious at the most inopportune moment. I know, deep down, she regards me as a neurotic and over anxious parent. If I am..then it's actually no wonder ! The first report by an ed. physcho we had when my daughter was younger was to suggest that I felt I the need to 'nurture' my child. If that's a fault then it begs the question, who exactly is it thats off the wall here?

[sky]

yes -totally agree with the"conforming " bit -have had to grit my teeth so many times at the lack of true understanding andEMPATHY that so many people have -in fact the camhs lady is like a breath of fresh air but wheher that is enough remains to be seen.as he is in a class with other children who do not have the same disability as him he is seen as a problem and is presently 2-1 as he has lashed out at staff only because he of the demands being made on him that he cant cope with. i think this is making things worse as too many people around him makes him more anxious of course.SO INFURIATING! WHY is conforming so important when a childs mental health and happiness is at stake? so many blinkered ,narrow minded people!!!