DLA 'days a week/times a day/minutes' and Autism

dizzyblonde82

I have recently filled out a DLA form for my son who is 5 years old and has been diagnosed as being on the autism spectrum.

I felt really bad filling in the form and found it upsetting, I was the same as you as I didn't really think about how much we have to care for him and how much help he really needs. As he is our only child we had nothing to compare to so we wrote out everything on the form and used some additional pages.

The first letter we received from the DLA office was advising that they were seeking medical reports, about 3 weeks later we were awarded DLA.

It has made such a difference to our lives as I have now been able to reduce my working hours down to school hours only, the additional time with my son has made a huge difference to how he talks and responds to me.

If you are really struggling with the forms you could try contacting a local autistic organisation who would look at the forms with you.

chivers1977

Blue Monkey

I used the guide on the Cerebra website to complete DS's form. I typed all of the answers to the questions on word and just wrote see additional sheets on the actual form. This meant that I could add and edit as I was going along. Might be too late for you now as it sounds like you are a long way through. Make sure you treat yourself with a nice glass of wine when you've posted it!

blue_monkey_2

Thanks for the replies, I sent the forms off yesterday by Special Delivery. I had a moment of 'have I forgotten anything' when I was outside the PO but I realised it was tough and I'd just let it go and see what happens.

I found out yesterday that my son is being bullied at school and I've been in this morning to speak to them about it. I am finding that he is really struggling socially, kids making him do things he should not and also they call him names and then pretend to be his friend then turn and beat him up. He is not even 8 yet. 3 other parents have told me that their children have told them my son was being picked on, he still thinks these little sh its are his friends. I have been in this morning and asked them to keep an eye on it so will see what unfolds.

Horrible nasty kids. I'll wait until they are old enough and I'll call the police if I find it happening then!!

Karena_3

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Hi.
Please do write down all issues with bullying and keep a record.
ACE have an excellent download with advice regarding how to do this.I will post a link for you.It is worth keeping a record so that you can accumulate evidence.Bullying is a very common problem for pupils with ASD because they do not always realise that they are being treated badly.
Does your son have any support during play time or lunch break ?

http://www.ace-ed.org.uk/advice-about-education-for-parents/Anti_Bullying/tackling-bullying
The information can be downloaded from this link.
Karen.

blue_monkey_2

Thank you Karen, I will take a look.

The SENCO/Head told me today that they will have someone keep an eye on him at break and play times.

It is so hard because I've seen how he interacts with these kids and is so obviously 'different' he does not understand their social rules and hey clearly do not want him around them but he cannot understand that. Because they are all made to sit and work together and they have to be nice in class, the assumes that this means they are friends with him.

The other problem I have is that (and from this I can only assume it is because he has heard people so many times talking about eye contact) he thinks he has to go right up close to people and stare at them in the eye. As you can see, he is clearly going to get picked on when he does odd things. Obviously there is only so much I can do while he is with me and this is what worries me. Thanks for the links though, a diary is a great idea, thank you, I will start one and speak to him after school.

dizzyblonde82

Glad to hear that you have sent the forms off, hope you get a decision fairly quickly

Does your son have a statement for education needs which gives him some one-on-one support? My son also gets up close to others and sometimes other children find it intimidating, my son also struggles to understand that the other children may not share his interests.

We introduced a home-school diary in which they write any issues which happen in the day and I can write anything that happens in the evenings or note my son's mood etc, we find this works well as we don't have to talk in front of my son and it provides a record so that we can see if a certain thing triggers problems.

The other main problem my son has is that he likes to lick everything, he licks shop windows, display cabinets, other children's faces etc

carerof3

blue_monkey wrote: »

Thanks for the advice. I did not do it today so will do it tomorrow and will go through the info.

I spent today trying to get a waterproof duvet cover - any ideas? I saw a PVC one online but can imagine that will get pretty sweaty. Ideally a terry toweling one that will absorb when he wees. I can't get the duvet done some days when he wets and this is not the best time of year for drying them (in the summer they go outside).

I have a waterproof terry sheet which is excellent (mind you, I bought a new one today and he freaked and would not sleep on it as he did not like the feel of it) but he still gets it on the duvet and it is driving me insane as it is cheaper to buy new ones than get them done locally in the launderette.

Ridiculous really.

There are lots of bedwetting aids in the shop at http://www.eric.org.uk/

e.g. http://www.eric.org.uk/Shop/product/119

Hope this helps.

Karena_3

blue_monkey wrote: »

Thank you Karen, I will take a look.

The SENCO/Head told me today that they will have someone keep an eye on him at break and play times.

It is so hard because I've seen how he interacts with these kids and is so obviously 'different' he does not understand their social rules and hey clearly do not want him around them but he cannot understand that. Because they are all made to sit and work together and they have to be nice in class, the assumes that this means they are friends with him.

The other problem I have is that (and from this I can only assume it is because he has heard people so many times talking about eye contact) he thinks he has to go right up close to people and stare at them in the eye. As you can see, he is clearly going to get picked on when he does odd things. Obviously there is only so much I can do while he is with me and this is what worries me. Thanks for the links though, a diary is a great idea, thank you, I will start one and speak to him after school.

Hi.
In my area there are some ASD outreach teachers.They work in mainstream schools.They work with children but also offer advice to school staff in dealing with difficulties during unstructured times.I found them very useful when my son was at primary school.

Some schools also use a circle of friends.A small group of children who would be good friends who are helped to understand the difficulties a child with ASD can have and how they might be able to help.

The NAS has more ideas for unstructured times.I will see if I can search them out.

http://www.autism.org.uk/working-with/education/educational-professionals-in-schools/lessons-and-breaktimes.aspx

School covers all of the school day and not just lesson time and so the SENCO should be able to help with break times and lunch time.

If your son is being picked on because he does not understand social rules this is directly related to his disability and the school have a duty to deal with the issue.It is no more acceptable than if a child who used a wheelchair was picked on because of the wheelchair.:mad:

Karen.

blue_monkey_2

Hi again Karen,

My son has started coming home from school wet and I have been to see the teacher today - I did write a letter also and put it in his homework book as she has been off ill and I did not know if she would be back - but I have listed everything in the letter. I also told her that he is coming home having wet himself so he is clearly anxious about a lot of things and I want it dealing with.

Children around here just do not get statements unfortunately, if they do not give them to children who cannot read and write at Y6 then I doubt they would give it to my son as he does not have any educational problems. The school are usually pretty good I'll be honest and I have spoken to his SENCO on Tuesday and we have the support of the Autism Advisory Service too who are at the end of the phone and will come into school.

I am also friends with some School Govenors and I have been to as many people as possible to talk about this - believe me, I'll not go down without a fight and I think they know this and this is why they are on the ball with my son as soon as I mention something, because they know I'll keep on climbing until I get the help I need.

Just so hard knowing how to start to deal with it but I have started putting notes in his homework book and speaking to the teacher. I told them that if he starts to smell of wee then this will give the kids even more ammunition. I have to admit, she was horrified when I told her this. It does seem a bit of a co-incidence though, I am wondering if they have scared him from going into the toilet on his own. I asked him today if the kids had been mean to him and he said not because 'boy x' was not there and he seems to be the ringleader.

Karena_3

blue_monkey wrote: »

Hi again Karen,

My son has started coming home from school wet and I have been to see the teacher today - I did write a letter also and put it in his homework book as she has been off ill and I did not know if she would be back - but I have listed everything in the letter. I also told her that he is coming home having wet himself so he is clearly anxious about a lot of things and I want it dealing with.

Children around here just do not get statements unfortunately, if they do not give them to children who cannot read and write at Y6 then I doubt they would give it to my son as he does not have any educational problems. The school are usually pretty good I'll be honest and I have spoken to his SENCO on Tuesday and we have the support of the Autism Advisory Service too who are at the end of the phone and will come into school.

I am also friends with some School Govenors and I have been to as many people as possible to talk about this - believe me, I'll not go down without a fight and I think they know this and this is why they are on the ball with my son as soon as I mention something, because they know I'll keep on climbing until I get the help I need.

Just so hard knowing how to start to deal with it but I have started putting notes in his homework book and speaking to the teacher. I told them that if he starts to smell of wee then this will give the kids even more ammunition. I have to admit, she was horrified when I told her this. It does seem a bit of a co-incidence though, I am wondering if they have scared him from going into the toilet on his own. I asked him today if the kids had been mean to him and he said not because 'boy x' was not there and he seems to be the ringleader.

Hi.
If a child has ASD and the difficulties with Social Communication experienced by them impact their ability to participate in any area of school life then they have SEN which is an educational problem.

Ben is very bright and able in many respects however he has a Statement of SEN.
I appreciate that many LAs try as hard as possible to avoid conducting Statutary Assessments.However any blanket policy which says ''We do not issue Statement'' is illegal.

IPSEA provide individual telephone advice for parents through the use of trained volunteers.It may be worth talking things through with them.

http://www.ipsea.org.uk/How-we-can-help/Advice-Line.aspx

I know it is a battle.We have pushed for several years and even though things are better I have still spent time this morning dealing with various issues at school.

Karen.