In a turmoil

[In a turmoil]

I am in a complete turmoil and just feel like curling up in a ball and shutting everything out!! My son has had behaviour problems for about the last year and a half . He is very bright and gets on fine when under supervision, in a classroom or supervised activity but when he is at break time or lunch time and sometimes in a group it all goes wrong.

 

He can be very aggravating and irritating to other children and even to me sometimes. But he seems to know who he can get away with this behaviour with....as he very rarely and sometimes never does it with strong / stricter people as I think he sees they will stand no nonsense yet with others he can seem to wind them up completely....so at times I think he can switch this on and off.

 

Also, I sometimes think what I am telling him...ie. to stop this bad behaviour ...is just not sinking in. Its hard to get him to look me in the eye and talk to him....sometimes he will seem to listen but other times his eyes are all over everywhere and I don't feel he's listening. Yet he can remember things I didn't think he had even heard ....and months afterwards....like a little radar!!

 

He keeps getting himself into situations and what happens is never witnesses by adults...all on childrens hearsay. I worry about this. He desperately wants friends and other kids seem to really like him but then he goes and blows it with them. Lately his behaviour, I'm told is more sexual....like stoking other kids legs and feeling them....I am really worried about this. I think it looks bad on me and like its coming from home which it isn't. This has got worse since he watched a kids sex education video. A lot of the time he picks up things off other kids , I think he is often wound up by them and egged on to do stuff which is inappriate but he just doesn't know where to stop.

 

I am going to get him checked out but all this is driving me mad. Do you think he could have aspergers but be only just on the fringe of it?

 

How old is he? The first two paragraphs might have been describing our little boy, but we havent had any inappropriate sexual behaviour. BUT he doesnt understand about personal space and boundaries which could be the issue here.

 

I think you need to see your GP for a referral to a psychologist and also ask school to get a professional in to assess him.

[moving]

Are you able to enquire about the CAMHS service in your new area?

 

I moved to avoid anti social behaviour last year and it was the best move we ever made, but the move prior to that was the worst move we ever made. I think you have to stake out the new area and see how it feels. You can do that if you have family nearby.

[I feel so so sad ...]

People who have read my posts before or read my signature will know that I am bringing up my grandchildren. They are the children of my DD age 22 who has recently been diagnosed as having Asperger's.

 

We have 3 grandkids. Raph is getting quite near a diagnosis of AS/ASD and will be 6 next month. Freya has been with me from birth and will be 3 shortly, Brigid is 15months and came to live with us at the end of August. The youngest baby is still in foster care pending assessments/court reports. Thank goodness that my daughter had the contraceptive implant last month at my insistence.

 

Ive had a hard week, hospital appointment and Educational Psychologist appointment, two out of 3 kids ill too. If that wasnt bad enough, the social worker and her manager visited tonight. They came early evening so they could see DH too. We are supposed to decide in the next couple of weeks whether we want to come forward for baby 4. We have been thinking about this for months. Although its difficult to cope at times, we thought that we couldnt turn our own grandchild away. We were willing to give it a go, but we would have to have DH reducing his hours, which has proved difficult, plus a childminder to do the school run and a give me a break.

 

It has been pointed out to us that the new little one deserves more than that. And they are right, and its breaking my heart. Deep down, if I use my head not my heart, this new little one will get more attention and more of everything I guess from an adoptive couple who have youth on their side and dont already have 3 children: at least one of which has AS. We were asked to use our heads not our hearts and think about what is best for baby 4 and also each of the siblings. I said I didnt want to be in the position of saying no, so we have come to some sort of agreement that we will come forward, there will be a short assessment, which hased on what they have seen lately will say we are doing a good job with 3 but 4 will be too much. Then they will turn us down.

 

I really really dont want the baby to be adopted, but I dont want to put her at a disadvantage, nor do I want to take attention away from the other 3 as they desperately need it.

 

 

Either way I could just spend the next few days weeping over it. I know in my heart its probably the right thing to let her go but it hurts like hell.

 

But also, if my daughter's Asperger's diagnosis had been made when she was a child, I dont think any of this would have happened.

[Aspies better looking]

There is one statement that keeps coming up in everyones posts ...

"big blue eyes"

DD has big blue eyes and is Asperger's. Her NT brother has brown eyes. DGS has big blue eyes and is likely Asperger's or ASD. They both started out blonde but their hair has gone darker as they have got older.

 

Is there an aspie with brown eyes, just to disprove the point please?

[iep targets]

I find learn his birthdate a strange one for an IEP dont you? Why? I know we all need to know our date of birth some time but surely there is something more pressing for him to learn, like high frequency words.

 

The counting ones are probably OK... Do they mean rote counting or count 30 objects accurately? There is a difference between just reciting the numbers and actually counting something.

 

I havent seen an IEP for a while though. Lets be honest its not fair for me to comment as I dont know the child, but if you feel there are other more relevant things as measurable targets on his IEP I think you should raise them.

[Fireworks]

Well, its November 5th and our fireworks are still in the cupboard unused. DGS isnt feeling very well and the noise of everyones fireworks are upsetting him.

 

Am I imagining this? When I was a little girl you used to be able to buy decent display fireworks with no bangs. Some boxes actually said no bangers. Things like Golden Rain, traffic lights etc where the point was the lovely changing colours. Now its as if every single one has to emit a loud bang or its no good.

[Lsa questions and annual review]

Does she know who you are? Mind you thats not the point. I really cant believe she has the cheek. I dont know how you manage to compose yourself. Dont you feel tempted to tell her to get on with what she is supposed to be doing? I think you need to complain formally so your child gets the support he needs.

 

I used to be a year one teacher. We had a nursery nurse who consistently did as you describe. None of the teacher's wanted her as she was either off sick or getting a coffee or doing something totally irrelevant. She always had a cast iron alibi though! She had worked in the school for years and I think when she first started her job there wasnt much to do, but as more and more children came to the school with increasingly complex needs, her time was in great demand. I used to regularly feel like tearing my hair out as I had a child in my class who hadnt been statemented but needed one to one as he functioned basically as a 2 year old. The problem was, it wasnt my job to discipline her, that was for the head to do, but I had to plan units of work around her and she never fulfilled the requirements. She wasted my time and the children's time. I left the school, she is still there and apparently still as useless as ever.

[Aspies better looking]

Well of course all of ours are beautiful!

[Have I been given accurate information?]

I would be grateful if those of you who have been through the statementing / diagnosis processes could have a read of this and make sure nothing is being missed.

 

It is suspected that Raph has Asperger's /ADHD/ASD, he has problems at school, in reception year the Early Years Inclusion Service were involved. This year (Y1) is proving difficult, his behaviour problems have increased, school got an Educational Psychologist to see him. She did some IQ type tests on him and wrote a report for school. I met with the Ed Psych, class teacher and senco today and the Ed Psych thinks we should go for statementing. The SENCO said - "can we still do that ?"- the Ed Psych said there is additional funding attached to statements for exceptional cases. Exceptional cases are not defined. Due to Raph's difficult background, he has many experiences in common with a "looked after child" (i.e. one in foster care). Such children are given priority in our area and he may get statemented.

 

The Ed Psych said the SENCO should fill in MPA1 for statementing. This requests a Multiprofessional Assessment. The issues she should include on it are Behaviour Problems, Disruptiveness, Aspects of Social Communication. A request takes 6 weeks. I can speed up the process by writing to the SEN Dept of the Children and Young People's Service, our local council, and asking for a multiprofessional assessment of our child.

 

Initially I was told we would need to go to a specialist centre which is an annexe of the Children's Hospital known as Ryegate. But as I have already got a series of appointments with CAMHS for assessments, the two specialists at CAMHS can do those assessments in house. ie they can assess for a social communication disorder.

 

Is all this correct? Can you see any possible pitfalls that I can pre empt?

 

If the Educational Psychologist thinks he should be statemented who else needs to be convinced?

 

I see so many of you that have problems with the system that the meeting seemed too good to be true.

 

#Thanks, if you have read this far!

[LICKING]

There is some post on the forum that discussed pica so do look into this, though I know he isnt eating anything, the one thing that was interesting was sometimes the Eating/licking was a result of anemia, so do look into this.

 

PICA is associated with children with Autism.

 

JsMum

 

I had pica when I was pregnant and craved playdoh. I did actually taste it and was disappointed to find it was salty. There was a theory that the cravings in pregnancy were to address a deficiency too! Interesting isnt it?

 

[Feel so bad for my lad......]

Im sorry to hear this. I know just how you feel.

 

We moved house last year because of a bully.

 

We shouldnt have needed to but no one was going to address the problem, we had done our best.

 

I have also been the victim of bullying as a child and as an adult, and you get to feel that its you that has something wrong with you. I couldnt let my child keep taking it, it got me down. Thats why we moved.

[Does your child have a Wii]

What stopped Jay from running around on the train, knocking into people, tripping up people, falling over and getting everyone anoyed, video games and consoles and I tell you they are a god send, if they werent around I would be in padded cell, in a holiday placement for kids with ASDs/ADHD, the tv, dvd, video, ds, psps, Portable dvd players, were on constantly, we never ever got enough of tomous the tank, dinasours, ect,,,, for some as bad as it sounds, they give us parents a bit of respite.

 

JsMum

 

Well said!

 

[Non-ASD-specialist NHS staff training]

Just discovered this post and decided to add to it.

 

I am really ashamed to admit that I have a psychology degree and I am a qualified early years teacher. I didn't know my daughter had Asperger's until she was 22. I knew she was different, but other professionals had dismissed my worries. I knew about Kanner's definition of an Autistic child, I had read Uta Frith's book on autism, but it never occurred to me that it applied to my daughter. The problem was, she wasnt the typical autistic child described in the text books. That may be a problem with the medical professionals that have actually heard of ASD. You are given a broad definition, you might actually just meet one child with autism in the course of your work, but that might not help you. The child will have the same broad traits, but they may be expressed in different ways.

 

I am so embarrassed that I never tell the psych at CAMHs or the Ed Psych or the Senco about my background!

[Does your child have a Wii]

Right on !! I have read about people insisting dogs can cure my son of autism, and now electronic games will, and boost his fitness ! he can run rings around everyone now......which is in stark contrast to the advice I had that electronic games will hinder his advancement and spoil his communication, if our kids are playing that all hours they aren't talking are they ? My son is strictly rationed, to certain times, and to a certain time scale... and only after he relates his day and what he has done...Some of us still don't watch TV my son doesn't, he has zilch interest in it, which I suggest is the true mark of a discerning viewer ! cos I hardly watch it either... as son of only plays one game and up to only one level, what's the point anyway ? these games seem to be a way out of communication, not a way in. At present it is a distraction till he finds something else to do...

 

 

Well that's one way of looking at it.

 

Our son's special interest is electronic games though. He seems to have a particular talent with the games for a 5 year old. He taught himself to read when he was 3 1/2 and often reads the little booklets that come with the games (the only person I know who bothers with this). He has even taken the instruction booklets into school to read. I also find that when he is playing a game it has a calming influence on him, i.e. he isnt jumping from one piece of furniture to another. I would rather he was outside with a football, but that can get annoying too. I have lived through many hours of thudding whilst my eldest sports mad son was kicking the ball against the outside wall. We all know that dogs and games cant cure ASD, but I dont see why our lad shouldnt enjoy them if that is his particular interest.

[WHAT MAKES YOU HAPPY?]

Chocolate

 

Classic Rock Music

 

Time alone: peace and quiet

 

Cuddling a tiny baby and smelling that new baby smell!

[Fireworks]

We buy a few low key ones (i.e. cheap ones!), for the girls. Raph likes the idea in principle but when the bangs start he gets upset. Sometimes he just gets overexcited and hyper, being noisy and dashing about. He doesnt like other people setting them off when he is in bed (like new year etc). He is OK watching them from a bedroom window though. Ive never been that big on fireworks. I remember buying some for our (now grown up) kids and husband and I were on our own outside after a while, kids inside eating and watching telly.

[Shouting & Volume Control - Any Advice!?]

I find the loudness hard to cope with too, as we are generally a quiet family, but Raph's loudness is now starting to spread to his little sisters. Our youngest girl, 15 months, has got very squeal-ly (if there is such a word).

 

With Raph its not just speaking in a loud voice (nightmare when little ones are in bed) but he also enjoys making lots of noise too. He recently asked me for some cymbals, which I conveniently forgot about. He likes banging things in general. Yet the vacuum cleaner is too loud, he doesnt like fireworks or certain other loud noises. I pointed this out to our Clin Psych and she said he probably gets enjoyment from making loud noises, whereas the loud noises he cant control lead to some sort of sensory overload.

 

We have a reward system going (marbles in a jar) and one of his rewarded behaviours is speaking in a quiet voice for 20 minutes. He hasnt achieved this yet.

[LICKING]

Im quite glad to hear that someone else has this sort of behaviour. I knew with Raph it was something to do with the spectrum, but I didnt know what. I suspect its some sort of sensation seeking, but also a way of exploring things; additionally he obviously doesnt know its not socially acceptable to go about licking things.

 

Raph licks the car window, thats not so unusual I know. He has tried to lick other things in public places, usually quite random and Ive had to remind him. The worst one was when a friend of my husbands came round. It was the first time Raph had met him and he kept licking him, despite being told not to! Raph also likes to put all sorts of objects, often toys, into his mouth, or explore them with his mouth. His game boy as edges which have obviously been sucked or gnawed, and countless other things end up soggy or chewed. I was going to say he was the only one in the family who does it, but thats not strictly true. His NT uncle chews the neckline of his t shirts.

 

I would also agree with tjw and state that Raph is quite tactile too.

 

So if anyone knows the theory behind the licking please tell us.

[Glasses are driving me crazy]

I also agree with the above.

 

Also have a good sturdy frame which is up to being bend and repositioned.

 

Will pm you with the frames we have

 

Thank you. As these were his first glasses I just got the ones that were free with the voucher. They are not spring loaded.

 

Thank you, especially, Lynne, this is the sort of specific recommendation I could do with.

[Glasses are driving me crazy]

This isnt about Irlen lenses!

 

Raph has glasses, they spend more time going back and forth to the optician than on his face. He bends them, not deliberately, just by being a kid and being heavy handed. I asked someone on the other "lenses" thread about special bendable frames but they said they were no better. I got a second pair, today they are both no good! grr! The main problem is that the arms get wider and wider apart. But to be fair, they often do get bent in other ways too!

 

Could someone direct me towards a type of frame (by PM if its advertising) that will stop this happening?

 

Is it better to get titanium? Can you get something on prescription for children with problems like ours?

[Spelling of Asperger's]

Oooh yes, me too, or with no 'p' at all - Asbergers....

 

A related question: do you pronounce Asperger with the 'ger' sound as in hamburger or Germany?

 

I always say Asperger's with the ger like hamburger. When people say it the other way I get confused and think Im wrong though. Im sure I read that it was guh sound not juh. Then I complete the rest of the conversation switching from guh sound to juh sound. Madness isnt it?

 

[What should the school have in writing?]

Hello,

My son has Aspergers and is in Class 2. He is very disturbed and upset at the moment and the school had called for a meeting with a SEN outside teacher and the SEN teacher from the school. I have a poor memory and I expected to see a written account of the meeting, but have nothing. I have just learned that my son should have a Individual Education Plan? Is this correct., should ALL children have one? If this is correct can I ask to see it?

The school are quite vague about how much extra help he is getting - he definately needs one to one sometimes.

We have another meeting coming up and the school doctor is going to be there, I'm not sure who else will be there. Should this meeting be followed up by a letter about what was discussed and the action plan?

Thanks, C

 

Yes he should have an IEP if he has Special Needs (which he does). Yes you can see it. Ask, they should try and work with you with some of his targets.

 

Having said that, I havent seen my boys IEP recently, but I do usually get written notes of any meetings we have.

 

Is he seeing the Educational Psychologist through school?

 

Are they going to get him statemented?

[letter to school]

I havent got an answer, but I think your suggestion is a really good idea (the letter with time frame) and wanted to say thanks, cos I will might need to do the same soon.

 

Good luck!

[Medical Appointment Support]

Is there any specific support available to individuals with an ASD or other issue that may cause some communication/interaction difficulties to help in attending and understanding what happens during medical appointments not related to the ASD?

 

For about the last two months I've been going through fairly intensive medical treatment both as an inpatient and outpatient and I've got several months still ahead of me - unrelated to ASD. I've been coping with a bit of ingenuity involving people I can text and say aarrggh haven't a clue what the docs said/doc didn't understand me and a fantastic GP/practise nurse who have been doing everything they can to make things as easy as they can for me but I'm feeling at the maximum of my coping levels now. I had a consultation today with my consultant, two other doctors and saw three nurses who help with different aspects of my treatment and I found it totally overwhelming - so much so I forgot to even look at the list of questions I had written to take, but also, I realise now, that I didn't really take in what was being said and so didn't realise that there were things I didn't understand until several hours later.

 

I know a certain degree of this would be expected for anyone in this situation, but it is exacerbated by my ASD. I'm unsure about how much of one of my medications to take tomorrow morning as I've been given conflicting advice and didn't get anything written this morning, which I really need and didn't think quick enough to ask - I'll contact my GP surgery for advice so I can get through this, although it's not ideal as it's caused me some further stress.

 

Are there any services/anything anyone can suggest to give me some support/who can I ask - I almost need another pair of ears to listen so someone can take me again through what was said when I've had some time to let things go in (and got away from the sensory overloading hospital environment) and realise what I didn't understand or someway of being able to go back with questions, but this doesn't fit the usual way consultants work.

 

I agree, you do need another person with you, some sort of advocate. I think some hospitals do have this sort of service but I cant for the life of me remember what its called. I have an Asperger's daughter, 22, diagnosed as an adult and I have to go to most of her medical appointments ESPECIALLY the psychiatric ones, otherwise nothing happens or she doesnt go or we never find out what is wrong.

 

I understand that most hospitals have a PALS service, but Im not sure if this is just about making a complaint. They are a patient advisory and liaison body. Take the name of your hospital and add hospital PALS to it on a google search and see if they come up about it.

 

Otherwise, I suspect you dont have a support worker through social services, but this is the sort of person who could help. I wonder if there are any charities who support people during their hospital visit? Surely there must be?

[Gah! Disaster of an outing]

I thought about this again today.

 

We called in Sainsburys with "our 3" not for a full shop just to pick up some baby clothes as they are 1/3 off atm. I think the older R gets the more his behaviour stands out from that of the girls and the more people gawp. I was going to say to one gawper about Asperger's but she looked so stroppy I couldnt face the comeback. Its all this lolling about, flinging head around, protruding tongue or rolling it or doing saliva thing, poking arms and legs out at unusual angles, making silly baby noises that caused all the staring today. It just brought home to me how he has no self consciousness about his behaviour or appearance which would normally regulate this sort of thing.

 

However, earlier in the week I took him on his own to the same shop and he was fine (mostly). When he has someone on a one to one basis he is usually quite reasonable. Not perfect but acceptable. Its a shame though, because most of us with more than one child actually want to do things as a family. Ah well.