Aspergers/ASD support thread

seven-day-weekend

cobbingstones wrote: »

Hi all,

I am currently waiting for a diagnosis for my son who is 5. School feels he could be either Asbergers or High Functioning Austisic

I would like to ask you all for any tips to help for Christmas? Last year he opened one present, then returned to the table and did some writing (His obsession at the time) Then with lots of encouragement he opened a little more etc.. He did not seem at all bothered by the whole occasion and to be honest at the time I felt very upset.

This year I've bought lots of Mr. Men toys (his current love) and a few different others for variety. How do you all prepare your children and yourselves for the differences that Christmas brings?

Many thanks

Why does it matter if he does not open them? Just give him one a day until they are all gone. It might be too much all at once.

Savvy_Sue

carerof3 wrote: »

My Mum says I should "chalk it up to experience" and let the matter drop, but I don't think he should be allowed to walk into private houses and inspect people's bedrooms just on a whim. And if this IS the law, then something needs to be said to parliment.

Thanks for updating etc. I'm with you, not your mum, I don't think I could let this drop. I think he was bang out of order, in so many ways, and we don't need that kind of bully in the police.

If you're arrested, you get a phone call. the idea that you can't make one if you're NOT being arrested strikes me as dubious, to say the least.

BTW, does your son carry a card to explain that he is a vulnerable adult? Would something like that be helpful? Maybe not if he's never out on his own, but could be useful eg if whoever's with him ever has an accident or is taken ill.

carerof3

Savvy_Sue wrote: »

Thanks for updating etc. I'm with you, not your mum, I don't think I could let this drop. I think he was bang out of order, in so many ways, and we don't need that kind of bully in the police.

If you're arrested, you get a phone call. the idea that you can't make one if you're NOT being arrested strikes me as dubious, to say the least.

BTW, does your son carry a card to explain that he is a vulnerable adult? Would something like that be helpful? Maybe not if he's never out on his own, but could be useful eg if whoever's with him ever has an accident or is taken ill.

Thank you for your support, it's good to hear you agree with me. No, he hasn't a card - but I think it was obvious he is disabled. He does have his name & phone no in his wallet. When he was younger I made him a badge with my mobile no on it saying "If you are concerned about my behaviour please phone ....". He doesn't really like wearing it, and takes it off, so I don't ask him to wear it unless I know he is likely to wander off on his own. He has 24 hour support really, but likes to go to the DVD section of the supermarket, while I browse round the clothes - that sort of thing. When he was really small the badge said "If I am alone..please contact ......" .

I've just got back from visiting h to see what is happening. It seems the police were passing, saw two missing window panes and my son quietly using his laptop in the front room. They knocked at the door. My son got to the door first (probably thinking it was me) as my h was in the kitchen at the back of the house. Son then started talking in what would sound like random sentences e.g. little boy swimming, the car went into the face - relating mainly to his favourite tv adverts. When h got to the door, the PC asked if they could come in out of the rain!! h said no, and PC said they were concerned about the welfare of the boy! When I was there later, PC told me that he could see through the window that son was autistic, and that he knew all about autism, so why he thought someone repeating odd phrases was being harmed is beyond me! After that they threatened forcing entry, and h, like me, being worried about son's reaction to this, let them in.

PC told H on tuesday that he doesn't think I'm very happy with him - an understatement! I'm going to try to see the log at the police station on Monday. PC thinks that I'm only interested in money, not my boys safety. This is because he was talking about h's depression - which I didn't know about. My logic is he pays his maintenance, so he must be in work, so he must be ok. Also being autistic that was what kept going round in my head, and I kept saying! Still, I don't care - the searches were illegal, and I will fight for an apology. I'm quite practiced at fighting causes - my method is polite, persistant and quote the law.

Sorry, I seem to have gone on at length again.

About the Christmas presents problem above. My sons both screamed at wrapped presents when young. I gave them unwrapped for years. Then one got 'into' having wrapped presents, and unwrapped any parcels he could get his hands on. Give him a gift to give to Grandma, and between door & grandma the paper will have been removed! Leave a wrapped parcel somewhere, at any time of year, and come back to find it open! I just gave the unwrapped presents in a large gift bag so you could see into it from the top - but still they were often uninterested. Leave the gifts around the place and when they are not 'new' they will love them. Now aged 20 & 22 they open presents, but the youngest still just throws them to one side and goes back to his favourite video, and the oldest is only interested in what was on his list for Santa - which this year is only three computer fonts - he has simple tastes!

Mandles

Well, this probably sounds pathetic but i am fed up of feeling like a trouble maker and a parent that everyone should beware of, especially as my DS's school just never seem to listen to me.

Last year i had a massive blow up in writing with my sons teacher as i was daily told that my son should be reading each day after school (hes 6 years old , autistic and behind, partly due to school (a whole nother story!) and he gets sick ALOT. I had initially explained that after school he either just does not talk at all or is incredibly angry and reading is just not going to happen! She then said, "well what about when you are making dinner or before bed?" ..... I then again, said how it was at home after school and she then had a dig as all the other parents write in the reading diary. Next morning i go into school and am greeted by TA who says "did you do your reading last night?" :mad::mad: So i exploded via reading diary explaining how it was and how bad this made me feel and how he just cannot do homework after school and how she had made me feel like a useless parent.She also had said he is difficult ast school but they manage!

The result from this that i had to have a meeting with tearful teacher who was shaken by my letter (i was very clear but not offensive to her) and the head teacher. And it was agreed that he could not do work after school but weekends and holidays is fine. Must add that teacher STILL gave me suggestions of how i could do it after school . Also i have told school how DS has no clue about road safety and would walk into road without looking.

New teacher, same One to one TA
8 months later, my son goes on a school trip across a massive, very busy A road which is a dual carriageway. Must add that he has a one to one assistant who i really like but instead of holding his hand was holding another naughty boys hand and a little girl who obviously wanted to hold the teachers hand. My son was holding another childs hand (who had just randomly punched someone!) and they all crossed to an island in the middle of this A road, my son is now 20cms away from speeding lorries, cars etc , with no one in front of him and not one adult in reach of him and he playing where he stood, waving his arms around.:eek: I stood on the other side of the road in absoloute horror. Eventually, after a lorry and 2 cars narrowly passed him, another teacing assistant caught up and saw this and stepped in from of him and said "wow , that lorry came close!". I said nothing but just went home and cried as he could have been killed.

So this was over a month ago now and i have said nothing (but will never let anyone look after him on a school trip again apart from me). But my fury is that i am being nagged all over again by his TA as my son needs to practice words after school, headteacher telling me off as i called his TA "a helper" in a holiday form . So with this pent up fury , i explained all over again how he is unable to do work after school . TA replied , ok then, what about in the car after school, or what about in the shops after school as you are walking around? I want to explode!!! These people who could have killed my son through neglect a month ago just wont listen and keep going onto me about the same old things and wonder why i get annoyed . I sent another long note in saying how frustrating it was that i have to keep explaining this and sent a print out from Autistic society saying how kids are different at school but they just don't take it in!! And now they are all treating me as if i am a difficult and nutty parent . I feel alone at the school anyway and this just makes me feel worse . I do really like his TA(thus dont want to get her in trouble) and love his new teacher , but the TA doesnt listen and Head is really nasty to me. I could scream!

kabie

Mandles.

That's not pathetic at all, it is very familiar sounding though. I'm an annoying parent too, if you want the best for your kids and you're going to advocacte for them it seems you have to get used to being disliked.

My sons primary school hated me and were quite open about telling other parents that they would prfer if I took my child to another school

Didn't help that I'm not great at tact etc (what with being autistic myself). I had an awful time at school and I'm just not prepared for my kids to have the same. On the bright side his high school is much better and he's actually happy to go there: there is light at the end of the tunnel, it's just that you may not make any friends on the way, good luck.

munchings-n-crunchings

Been there, done that and got the t shirt :-)
From age 7 to 11, my daughter was a ticking time bomb from the moment she got out of school, till she eventually got it out of her system. But let's face it. She had just spent the last 6.5 hours trying to conform and fit into an environment she didn't understand.

There are some simple things you can do to help.
don't worry with the normal conversation, like 'how was your day? it can be just too much. Give him space to work out his frustration.
Something line a trampoline is perfect, and he can bounce away and calm down.
Try a timetable, for homelife-evenings and weekends. Structure is really helpfull for children with ASD, so they know what will be happening and when. Schedule in things like quite time, cartoon time, reading time and bedtime. Use pictures to help with identifying things. This way, activities can be included, and they won't come as a total surprise. I made a large A3 size timetable and laminated it. I found pictures of different things that were applicable to my daughters life, like swimming, music practice, homework, bath time etc, and I made 1p size discs and laminated them attaching velcro dots to the back. You can make extra things to include a dentist visit or something like that.
If it helps, sit with your son, and whilst you read, see if he will point and follow the words with his finger. Talk about wht you see in the picture and bring the story to life.
I bought my daughter a book called When My Autism Gets Too Big, which helped her understand her feelings.

My last piece of advice, would be...don't let autism beat your son. The minute you adopt the attitue he can't do something, then you've lost. It's ok to say things are hard, but don't give in. Be creative, and find solutions. It might not be the normal way of doing something, but if it works, run with it.

Regards
Munchie

Mandles

Thanks both of you for your words and advice. He used to be like a zombie for hours after school and not talk, not look at you, answer you...he had just "gone" . It used to break my heart to see him like that. He is still is quite like that after school but sometimes just incredibly angry. I agree, it is purely all the stress and overstimulation from school coming out so i feel that why on earth should i force him to do homework when he is like that? He is only 6 and he just goes to his room and spends time quietly unwinding with lego or something like that and it works for him. And if the work is that important, it surely should be done at school. As i say, i am more than happy for him to do work at weekends and school holidays so why is it so hard for the school to bend and keep making such an issue out of this?
He has clubs he does weekends and school holidays and i have social stories at home for him and he is a different child wekends and school holidays.
I have a much, older son with ASD and he has a very happy, sucessful , active life so i think i deal with it fine but sometimes schools just need to listen as i know my sons limits better than them and for age 6 i think he is doing quite well and for him right now, 6 hours a day of school is his limit.

Flyboy152

Mandles wrote: »

Well, this probably sounds pathetic but i am fed up of feeling like a trouble maker and a parent that everyone should beware of, especially as my DS's school just never seem to listen to me.

Last year i had a massive blow up in writing with my sons teacher as i was daily told that my son should be reading each day after school (hes 6 years old , autistic and behind, partly due to school (a whole nother story!) and he gets sick ALOT. I had initially explained that after school he either just does not talk at all or is incredibly angry and reading is just not going to happen! She then said, "well what about when you are making dinner or before bed?" ..... I then again, said how it was at home after school and she then had a dig as all the other parents write in the reading diary. Next morning i go into school and am greeted by TA who says "did you do your reading last night?" :mad::mad: So i exploded via reading diary explaining how it was and how bad this made me feel and how he just cannot do homework after school and how she had made me feel like a useless parent.She also had said he is difficult ast school but they manage!

The result from this that i had to have a meeting with tearful teacher who was shaken by my letter (i was very clear but not offensive to her) and the head teacher. And it was agreed that he could not do work after school but weekends and holidays is fine. Must add that teacher STILL gave me suggestions of how i could do it after school . Also i have told school how DS has no clue about road safety and would walk into road without looking.

New teacher, same One to one TA
8 months later, my son goes on a school trip across a massive, very busy A road which is a dual carriageway. Must add that he has a one to one assistant who i really like but instead of holding his hand was holding another naughty boys hand and a little girl who obviously wanted to hold the teachers hand. My son was holding another childs hand (who had just randomly punched someone!) and they all crossed to an island in the middle of this A road, my son is now 20cms away from speeding lorries, cars etc , with no one in front of him and not one adult in reach of him and he playing where he stood, waving his arms around.:eek: I stood on the other side of the road in absoloute horror. Eventually, after a lorry and 2 cars narrowly passed him, another teacing assistant caught up and saw this and stepped in from of him and said "wow , that lorry came close!". I said nothing but just went home and cried as he could have been killed.

So this was over a month ago now and i have said nothing (but will never let anyone look after him on a school trip again apart from me). But my fury is that i am being nagged all over again by his TA as my son needs to practice words after school, headteacher telling me off as i called his TA "a helper" in a holiday form . So with this pent up fury , i explained all over again how he is unable to do work after school . TA replied , ok then, what about in the car after school, or what about in the shops after school as you are walking around? I want to explode!!! These people who could have killed my son through neglect a month ago just wont listen and keep going onto me about the same old things and wonder why i get annoyed . I sent another long note in saying how frustrating it was that i have to keep explaining this and sent a print out from Autistic society saying how kids are different at school but they just don't take it in!! And now they are all treating me as if i am a difficult and nutty parent . I feel alone at the school anyway and this just makes me feel worse . I do really like his TA(thus dont want to get her in trouble) and love his new teacher , but the TA doesnt listen and Head is really nasty to me. I could scream!

From one "difficult" parent to another, I say, "screw 'em!"

:rotfl::rotfl::rotfl:

But seriously though, there really seems to be a breakdown in the management of childen with additional educational requirements. You need to sit down with the SENCo (I presume they have one) and sort this out, otherwise things are never going to get better.

When was the last time a review was done? Have they done an IEP (Individual Education Plan)/Provision map? Have you been through the statementing process?

It might also help if you get in touch with your local Parent Partnership, they can help with advice on how to access all the help your son needs.

Flyboy152

munchings-n-crunchings wrote: »

Been there, done that and got the t shirt :-)
From age 7 to 11, my daughter was a ticking time bomb from the moment she got out of school, till she eventually got it out of her system. But let's face it. She had just spent the last 6.5 hours trying to conform and fit into an environment she didn't understand.

There are some simple things you can do to help.
don't worry with the normal conversation, like 'how was your day? it can be just too much. Give him space to work out his frustration.
Something line a trampoline is perfect, and he can bounce away and calm down.
Try a timetable, for homelife-evenings and weekends. Structure is really helpfull for children with ASD, so they know what will be happening and when. Schedule in things like quite time, cartoon time, reading time and bedtime. Use pictures to help with identifying things. This way, activities can be included, and they won't come as a total surprise. I made a large A3 size timetable and laminated it. I found pictures of different things that were applicable to my daughters life, like swimming, music practice, homework, bath time etc, and I made 1p size discs and laminated them attaching velcro dots to the back. You can make extra things to include a dentist visit or something like that.
If it helps, sit with your son, and whilst you read, see if he will point and follow the words with his finger. Talk about wht you see in the picture and bring the story to life.
I bought my daughter a book called When My Autism Gets Too Big, which helped her understand her feelings.

My last piece of advice, would be...don't let autism beat your son. The minute you adopt the attitue he can't do something, then you've lost. It's ok to say things are hard, but don't give in. Be creative, and find solutions. It might not be the normal way of doing something, but if it works, run with it.

Regards
Munchie

This alone, is probably the best advice any one will ever get about how to manange ASD.

Gingham_R

Mandles, how would your son feel about allowing you to film him in the evening? If his teachers could see just how worn out by it all he is by the end of the day they MIGHT start backing off on the expectations of the infuriating reading record book.