Aspergers/ASD support thread

starnight_2

No it's definitely an IEP. I've had a myriad of excuses form the school, i.e you already got a copy (I definitely didn't I check DS's school bag everyday as he always forgets to tell me about notes), the teacher is off, I'll do it tomorrow, and even once I was told they didn't have time and would do it the following week.

I'm becoming more and more unhappy with the school and it does not help that the acting head is the who you go re bullying/school issues and is also the one who refused to believe there was anything wrong with DS. But he doens't have this teacher anymore so I was putting that behind us, my main issue now is that although he has an IEP the teacher doens't seem to follow through. I think she is quite new to it an admitted to never having to do one before. I'm kind of at a loss what to do and where to go, he has 2-3 different teachers a week, and coming home from school with work that he had no idea what to do with.

I feel in limbo at the minute as he was discharged from CAMHS and passed on to ASD intervention team who have yet to see him. And the issues that he had before Christmas are getting worse again. I don't really know enough about how IEP's work, so thanks for your help.

laverne_2

my son has an IEP and when its due to be reviewed his teacher will call us in and explain what his targets are, what they expect him to achieve and how they will help him achieve his goals. There is usually room for us to add any goals that we think he needs to achieve in school as well. We then discuss the last IEP and if he made any progress with it. We also allways get a copy the day after our meeting. Maybe you can tell the school that you know other schools do it this way and you expect them to follow suit. Hope this helps and you start to get the support from school that you deserve.

cazscoob

Hi i recieved some wonderful advice before about my 3 year old Charlie and im back for more!
Charlie left the development centre he was attending 2 days a week to attend the local mainstream nursery. I had my doubts ont his working but went along with it thinking it may be the making of him and it has all collapsed around me The nursery started to take him on the 21st of Jan(his 3rd birthday) He attended for 2 days without too much fuss but was very quiet and observed more than being involved. Day 3 he fell off a bike outside landing backwards and banging his head on the wall, this is when the problems began. Nursery staff said he was fine after a few minutes but became hysterical when i went to pick him up, he would not leave my side the rest of the day and the following day refused to go back. I stayed with him for 2-3 sessions whilst he stood with his coat in his hands beging e to take him home.

I took him on a number of occasions but he started to make himself sick and would become hysterical and out of control at the word nursery, this being very stressful for both of us. The nursery have tried to write him a letter and i have even taken him to the school gates and back trying to get closer to the nursery wit no luck. We are stuck now as to what to do? we now have no support or time away from him and he seems to get stressed whenever he thinks he is going to be left with anyone apart from us and his grandparents. The pre school community team seem to think that we should take him and leave him until he settles but this seems awful nd cruel to leave him somewhere he is scared of/doesnt like?

We really need some advice and support and seem to be hitting a brick wall with all the support disappearing The development centre was perfect for him and i think he needs to go back but am unsure that they can take him back as they felt he needed a little more and it was time for him to move on. Please Help!

Savvy_Sue

Would the Development Centre give you some advice on this, do you think?

cazscoob

they cannot accept him back as it has to go through the pre school community team assessing him and making an application for him to go there. As its the only place in the area for children with additional needs the demand for places is high, the staff are all trained nurses and not nursery staff.

the preschool community tea cant understand the problems we are having and think tha this is the best place for him:(

On a totally unrelated note we were visiting a nursery that had an amazing magnetic toys called Clever cogs, Charlie was amazed by it and spent a long time playing with it and getting the pieces to move. i think its a great toys for Autistic children and seems to hold their attention!

Savvy_Sue

I didn't think the old place would take him back, I thought they might be able to offer some advice on how to get try getting him back to the 'new' place without too much stress.

I mean sure, the 'conventional' advice would be to tough it out, but that doesn't necessarily work well with all children, and could potentially be very damaging!

Another suggestion would be to see if someone from the nursery could visit him at home, and then maybe meet him at the gate and take him in. I'm not saying they would, but you would at least be communicating that he has additional needs!

Js_Other_Half

I know some children/adults with ASD struggle with toothpaste, but I came across a toothbrush today that doesn't need toothpaste.

http://www.ecoutlet.co.uk/soladey-2-ionic-toothbrush.html

It's not cheap, but may be worth considering if someone really cannot abide toothpaste of any description.

lottylouj

Hi all, i dont know if i need advice, but really need a rant.
I have DD (11) diagnosed with asd, gdd, epilepsy, learning disability and more.
She has become a living nightmare over the last couple of weeks, attitude, violent temper towards the younger brother and the dog, agressive, breaking belongings, answering back etc. I know some of it is down to her age and pubilty, we hit that in jan ( does anyone have problems with there DDs and refusing to wear sanitry wear?).
I just do not know what to do with her any more, i can bearly stand to spend time with her, i dread picking her up from school. She is a real jeckyll and hyde, any single thing can set her off, as simple as brushing her hair/ teeth. She has no idea of personal hygiene, i have tried all sorts with her.
I am on my own with her and DS, no support from family or friends and am just about at my wits end.
I feel sick at the thought of the easter holidays and how we are going to get through it.
She gets incredably anxious, she will rock back and forward, flap her hands, and pick her fingers and lips until they bleed.

She is in main stream school and gets very little support and non of it is on 1-1. She will not attempt to help herself in school, she doesnt do homework any more as that was a complete source of upset. She is not statemented, cant get her one no matter how hard we try ( the school cant believe she hasnt got one) She is very isolated in school and has no friends, She started there in Sept (secondary school) and it has always been the same, nothing has changed in school or at home that i can think of that would cause these latest problems.

I have a support worker who has just started with me and a referral has been put into the disabilities team, but i dont know what they can or might do.

I cant go out with her, she will run off in to roads, steal, have a hissy fit, hurt her brother. I dont know how to deal with her when she does something naughty, nothing works at all. I know she doesnt understand as others would, but its like hitting a brick wall.
Mentally she is about 5-6 yrs old, and i see other kids moving on and growing changing and delevoping while she is left behind, her brother is 8 and has over taken her. I know she doesnt know any different from her life but it is so hard.

I guess i dont understand her as much as i should and a lot of this is my fault, but i just feel lost. She has completly changed i bearly recognise her any more. I want her to be re acessed because im sure the origional diagnoses doesnt stand anymore. I know any type of diagnoses will not change her, but maybe it will help me.
I am a member od nas but i find the website hard work to navigate.

Did anyone find things changed or got owrse around the 11 age? how do you deal with girls and sanitry wear and personal hygiene.
Guess i had to get this out of my system, im sorry if it doesnt make a lot of sence or if im rambeling. I know i come across as not caring and maybe not loving. I do though, i love her to bits and want the best for her and ds, but i just feel at a complete loss of what to do next.

Savvy_Sue

In the absence of more constructive advice, have a massive hug lotty!

The only thing I can think of off the top of my head is those picture stories for the sanitary wear and hygiene. A friend had some when she decided it was time to get her DD out of nappies at night (aged 7 or 8), as she was sure DD just liked the feel of them.

There was a picture of DD happy in her nappy, and going to bed - teeth, hair etc.

Then there was DD without her nappy, all the routine, and DD looking less happy, but still going to bed.

Then there was DD sleeping all night without her nappy, and waking up happy.

Or something like that.

Can anyone explain this better?

blue_monkey_2

Hiya,

Did not want to read and run. Yes, they are called power cards too, so you have your DD favourite character telling her that she needs to wear it to keep fresh and clean.

I have to be honest, I am a bit of a meanie with my AS children, I could let them walk over me or I could just make them do it. Yes we fight over it, there are tantrums and there are tears, bit eventually these things become part of their morning routine.

I know I am going to get shot down in flames over this but there are a lot of parents that 'give in' for a 'quiet life' and to stave off the tantrums but there are things that are children need to learn that they have to do, to be accepted in society - not now, but as adults, but this learning starts when they are children. And I think that if being made to do these things (yes, against their wil initially) it does beince accepted as being part of their routine. Yes you need to pick your battles but our kids also need to elarn to fit into society, it is just that the job is a bit harder than with NT kids.

I had a shower with a fold back screen put in because I knew there would be times I am holding my son down in the bath to get him clean - if I had never bothered then he would not be bothered in bathing - but now he does and he lovs to lie in the bath, Likewise as with cleaning his teeth, I held him down and he had to do them. Now they are part of his routine. Same with haircutting, I hold him down while my wonderful hairdresser runs the clippers over. He screams and he cries but hey, that's life, it needs doing.

Sorry, I know that this is not much help but your daughter does need to learn that she HAS to do these things. Even if you have to make her wear a panty liner every day to get used to the feeling. It is easy to not to do them because she has a tantrum, hits, screams, shouts, etc.... walk away and go back and do them again. I have spent time locked in the bathroom with my son fighting against bathing but now it is part of his routine.

You need to ensure that these things become part of your daughter daily routine so that she feels she HAS to do them as routine is so important to AS kids. The thing is, it has not been part of her routine and so she is fighting against it. This is what you need to change.

Sorry if that comes across as harsh.

It is hard but I think I am much harder on my kids than other parents are and I do not really give into thing like this because, having been the victim of bullies at school, I refuse to let my children be a target too. I feel I am being cruel to be kind, but it has worked for us. it just takes a lot of fighting to get there. The reason she is not interested in the hygiene is because you have not done it so routinely. Yes, you can pick your battles, but for me, this was a battle I wanted to win.


ETA: You could also put these things on a daily timetable so she has to do them, do you have PECS cards you could use? You could add a ST one.