Aspergers/ASD support thread

laverne_2

Can't sleep and dreading the morning:(

Savvy_Sue

Aw, have a hug laverne

I wonder if there are specific things at school your DS can't cope with - noise and 'busyness' are often big no-nos for these children. Letting your son be somewhere quiet until it all settles down could help. Being dragged in doesn't sound like a good thing at all, btw!

Mandles

laverne wrote: »

Hello, hope you don't mind me joining your fantastic thread!
My 6 yr old son was diagnosed as having autism a couple of weeks ago. He doesn't seem too bad to me at the moment - main issues are concentration at school, hating school and occasionally having huge screaming tantrums when he doesn't get his own way!
School has been trying to deal with the concentration situation but don't really seem to be getting any results, when I asked what we could do at home to improve this I was just told to get him to do puzzles (which son does enjoy and always has so we are not really doing anything new here) He enjoys maths in school but struggles with literature. Have bought him some reading/writing workbooks for him to do at home which he is really enjoying and is able to complete the work with a bit of explaining and encouragement.
I have just been trying to ignore his tantrums when he has them as tbh I don't really know how to deal with this and don't really want to risk getting into an argument with him and getting cross as I am not sure if the tantrums are down to naughty behaviour or are a result of the autism? Also I'm fed up of other family members telling me to 'sort him out' and that he is not autistic just spoilt (tbh this has crossed my mind as well).
The main problem for me is getting son to school - over the past month he has really started to hate school and tells me upto 10 times a day that he doesn't like it/doesn't want to go etc. The week leading upto half term was unbearable. He had to be dragged in one day by 2 male teachers, had to walk him from the office through the school to his classroom on another occasion and was an hour late on another day because he was refusing to get ready in the morning!
Anyway, I'm really sorry to rant on and on but just needed to get things off my chest as although I know these problems are not half as bad as what some of you are experiencing they are making me quite upset at times and was hoping some of you maybe had some advise on ways I could help my son become happier with school. Am hoping to look into a support group near me soon but am doing up the kitchen this week and its all a bit hectic! Thanks, Laverne

I am sure that others will give you some good suggestions for school as i know it is a problem for many of them. If you think of it, it must be a real assult to their heightened senses . All those sounds , so much going on. My 5 year old goes into a sort of sensory overload at the end of his 2 hours at school (he only does 2 hours but will just be doing mornings..he is so hyper!) and does not hear some of the other kids talking to him or saying goodbye.

Tantrums are part of the autism but as they get older the apparently learn what triggers them and learn more control. My 5 year old is currently under the table having a wobbly because he cannot have another yoghurt. At 4am yesterday morning i was going through the toy box looking for a particular toy that he woke up wanting. There is just no reasoning with him. He just gets louder and worse and does not let things go and it is not worth the grief.

Ignore relatives, they have no clue what it is like. My OH is furious with a relative that we thought was on our side. She is making out to other family that it just weak parenting that my son is like he is which is total rubbish as i am a strict parent and my other children show how well that they have been brought up. Some people just have no clue and i'd like to see them cope with it.

The special needs coordinater should help you a bit with suggestions.

It does get better as they learn to know what triggers them and what to do when they start to feel that way. I did see that a few people said their kids got even worse at age 6 so he may get better.

Change of diet may help a little. It is a route that i am going down as my lad definately is worse when eating/ drinking some things (cows milk is one!!) and migranes that he gets often is also another thing that makes me think that i need to sort out his diet.

Keep your chin up. You are a good mum in a hard situation and you are not alone, especially this morning with kids going back to school.

Things that help my lad a little is the tv switched off (it is always on as i need background noise but he is a little better and talks better what it is off). No sweets but that is a real struggle to achieve as he can get in any cupboard / hiding place.

Agreed, dragging him into school physically by 2 teachers shows that they need to address this properly. Can he go to the office and "help" there for a while first. Can he start school by going to the library and doing a puzzle until he is calm. Maybe cut his school day and build it up gradually again. The school should be able to accomidate to his needs and may even be able to get extra funding for someone to just help him and be able to do the things like take him somewhere quiet what it gets too much.

If it helps eduaction wise, my older DS i think also has a very mild touch of autism. He really struggled at first school and had no clue what was being asked of him half the time as he has poor understanding.He was below average for everything. He then got to about 11 and everything started to sort of click in his head and he is average in most things and a real maths and science brain so is doing well in those subjects so don't worry too much along the learning front. Good luck.

laverne_2

A huge thank you to savvy sue and mandles - your support and advise have really lifted my spirits today so thank you!! :j

I agree that the teachers dragging him in was too extreme which is why I walked him through school to his class one day and allowed him to be late on another occasion. That particular day caused so much distress for my son and me (I was crying almost as much as him!) that I have vowed to not let this happen again. You'll be pleased to hear that we had a good day today and he went in with no problems (apart from the small tantrum he had about not liking his umbrella anymore but that was dealt with quickly and he ended up holding my hand and sharing mine which was nice:))

I have got a huge uphill struggle with the school that he goes to as they apparantly do not favour kids with additional needs and only seem to want to concentrate on the 'good' kids. When my other half spoke to ds class teacher before half term to let her know he has had his autism confirmed and that we would like to have a meeting with her and senco she told him that senco would not help:mad: - I thought that was there job? I am a determined mum who will fight for his right to stay at the school he is in and to get the extra help he deserves. He has lots of friends at his school and I feel that he is not enjoying his time there as he is not getting the help he needs at the moment and i would hate to uproot him and move him to another school but obviously understand that if things do not improve where he is then i would have to seriously consider this

Mandles - thanks for the advise on the food issues, I honestly thought that it was only things like sweets and sugary stuff that were triggers - never imagined cows milk to be one (ds can drink upto 2 pints of the white stuff a day!) Will definately need to have a look into this some more and try to cut certain things out. My ds sounds a bit like your older one - has poor understanding but when things are explained to him on a one to one basis he can do the work. Last year he could hardly read 2 words but now his reading is getting more fluent by the day and his teacher has even said that he sometimes helps the other kids with their reading - he was just a bit slow on the uptake but as you say this seems to have 'clicked' in his head now and he seems to be getting on well.

So sorry that i have rambled on again but I don't really have anybody that i can talk to about this stuff and it is really nice to know that I am not the only one in this situation.

One more thing - does anybody know how long the statement process takes as I know that we will not get any beneficial help from school until he is statemented:mad:

rainbow81

Hi Laverne

Sorry you are having such a tough time. My son is also 6 and has a 16 hour a week statement.

I am no expert in the Statementing process at all, but having been through then maybe my experience may help you.

Firstly, does your son have an IEP (Individual Education Plan)? You should know if he has as you will be called in to see his teacher and possible SENco to discuss it termly.

This will mean he is on at least School Action, where he will get targeted help and support in areas he is struggling with.

If outside agencies are called in to help with your son (such as speech therapists or Autism Outreach/Educational Psychologist) then he will be moved onto School Action plus.

The school then gets funding from the LEA so it is when the needs are more severe/complex. After a couple of terms of not getting very far on SA+ then it was suggested that my son would benefit from a Statement.

We had shed loads of evidence of his needs, from speech therapists, physios, occupational therapists, Paediatricians and the mental health service.

He is fine academically, as in he can read, do maths, and has an understanding of the world relevant to his age so not being behind academically doesn't matter if there are significant social or attention needs (which my son has).

My son does't currently have behaviour problems at school, but they are pretty flexible with his needs. There was a time when he was so anxious that he would not even go into his classroom and would cry and withdraw and be so upset, it was heartbreaking so I know where you are coming from there.

I would say that the whole statementing process took about 10 months from when it was first suggested to getting a person employed to support him. I should also point out that we started looking towards a statement before an official diagnosis.

May be it is that your son doesn't need a statement, but it certainly sounds as though he needs some extra support at school. When my son was on SA+ he got 10 hours of support a week.

I would suggest you contact Parent Partnership as they know the ins and outs of the process involved and will be able to support you with the choices ahead of you.

Have you been offered a place on the Earlybird Plus course? That is something you attend with someone from the school (if they are willing) and I found it invaluable in learning what my son needed at home and at school. The main thing was t make everything visual! He has lots of photographic storyboards, especially of things he is unsure of like the start to the school day, and school trips, that sort of thing.

Good luck and sorry for the huge post!

Savvy_Sue

Statements, I think there is a time limit to how long it can take, but even before I got to the end of that post I was going to say IPSEA! Talk to them about the reactions you are getting from school.

Having said that, sometimes it's best - for the child's sake - to walk away from a school which doesn't care and find one which does.

angie_baby

Hi All,

Has anyone had to give up full time work to care for the child due to there ASD? Im a single mum, so would have to claim benifits.

Im really thinkin of giving up work for the next 2 years to get him sorted. It would also give me time to study too.

Anyone ever had the same? Any any ideas how i would go about it. I did post on the benifits board ages ago when i was first thinking about it and they rekoned idbe entitled too carers allowance. Or should i just go and see my local CAB centre?

Thanks,

Angie

Mandles

laverne wrote: »

A huge thank you to savvy sue and mandles - your support and advise have really lifted my spirits today so thank you!! :j

I agree that the teachers dragging him in was too extreme which is why I walked him through school to his class one day and allowed him to be late on another occasion. That particular day caused so much distress for my son and me (I was crying almost as much as him!) that I have vowed to not let this happen again. You'll be pleased to hear that we had a good day today and he went in with no problems (apart from the small tantrum he had about not liking his umbrella anymore but that was dealt with quickly and he ended up holding my hand and sharing mine which was nice:))

I have got a huge uphill struggle with the school that he goes to as they apparantly do not favour kids with additional needs and only seem to want to concentrate on the 'good' kids. When my other half spoke to ds class teacher before half term to let her know he has had his autism confirmed and that we would like to have a meeting with her and senco she told him that senco would not help:mad: - I thought that was there job?

One more thing - does anybody know how long the statement process takes as I know that we will not get any beneficial help from school until he is statemented:mad:

My sons statement took about 3 -4 months. It depends on lots of things. How quick the experts return their results, how many other statements are going through and loads more things.

You're school sounds totally rubbish (sorry but it has to be said, especially as you can't even see the SENCO!) Ridiculous. Ever thought about moving schools? I was told that mine may do better in a small school which i have gone for. Maybe meet some local heads of the local schools if it is an option that you are thinking about. TBH you are probably in for a bit of a fight with one thing or another wherever he goes.

I always got very frustrated with my older ds as he never could do more than one thing that i asked him e.g "can you go and get your socks and pants" and he would only get pants as he could only retain 1 thing at a time. Only now do i know that that is part of aspergers , so no wonder school is hard as some of them can only do 1 thing at a time. They should have someone explain questions to him, even at exam times.

You may also be able to get disability and carers allowance which is a real help. Come here for help with the forms as they look simple but it is important to fill out a certain way or you could lose what you are entitled to.

By the way, our SENCO is only in one day a week and gives suggestions as to how to help my lad best. She did say that she will always meet with us when we want so that is what yours should be like really in my opinion.

Mandles

angie_baby wrote: »

Hi All,

Has anyone had to give up full time work to care for the child due to there ASD? Im a single mum, so would have to claim benifits.

Im really thinkin of giving up work for the next 2 years to get him sorted. It would also give me time to study too.

Anyone ever had the same? Any any ideas how i would go about it. I did post on the benifits board ages ago when i was first thinking about it and they rekoned idbe entitled too carers allowance. Or should i just go and see my local CAB centre?

Thanks,

Angie

I have pm'd you but here are the links for the forms. get them sent as soon as you decide as they only count from the date you apply;
(carers) http://www.direct.gov.uk/en/CaringforSomeone/MoneyMatters/DG_10012522

http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/On_a_low_income/DG_10018926
and for lone parents http://www.direct.gov.uk/en/Parents/Moneyandworkentitlements/YourMoney/DG_4003043

angie_baby

Thank you mandles.

Today i made the choice.

I am going to become a SAHM for the next two years. It will give me time to sort my DS's problems out. Im hopng to get him ready for main stream secondary school. I needed to do this ages ago. So as of the 1st of May i will be here for him