Aspergers/ASD support thread

seven-day-weekend

Looby-loo. how sensible!

My son had to go to central Birmingham to work for two weeks . Once he got out of New Street Station, he asked someone where the address was. They told him but he could only remember the first 'turn left'.. So he turned left and walked until he came to another junction, then did the same again. He found the place by this method. He then had to do the same again when it was time to come back!

He had to ask directions, there and back, every day for the fortnight he was working there. After this he 'had the map in his head' - but he didn't have to work there any more!

This was several years ago and he says if he had to go there again, he'd have to ask directions agian as the 'map' has now gone again.

mandy.h_2

Strapped wrote: »

Hi everyone. Well, we've had some good news in the Strapped household. It looks as though DS will be getting his statement and additional funding for 1:1 support - the details are not finalised yet, but in the meantime the LEA have started paying for 0.4 time support (and expect this to increase). :j


Soooo...I decided to have a go at claiming DLA for DS as well. My God, could they make the form any harder?!

I've had a look at a couple of the forums helpfully mentioned earlier in this thread (been reading over the last week lol!) and found the Cerebra guide and the DWP's guide for decision makers, etc but I still have a fairly basic problem: my son is nearly 7, and as I understand it, to get DLA you have to prove that he has care needs "substantially in excess of those for an "ordinary" child of the same age".

Help?! (He is my elder child...)

What would people say that an "ordinary" child aged 6/7 should be able to do re. dressing/undressing, eating/drinking, toiletting, etc? I guess that they would not be fully independent anyway at this age.

For example, dressing:
(a) be able to go to their room, select appropriate clothes and put them on independently and return dressed correctly
(b) need parent to select appropriate clothes eg put them out on their bed, but for them to be able to then dress themselves without further help
(c) need help selecting AND dressing
or (d) something else?

I feel overwhelmed having to consider this stuff for each and every little aspect of day-to-day living...I think I do a lot for DS - he clearly has "problems" - but without knowing what is "normal" it's difficult to judge what constitutes "substantially in excess". (For example, getting dressed comprises me laying out his clothes in the morning, asking him to go and get dressed, trying to let him do it himself (he has to learn and all that) but him returning still in his pyjamas, for me to remind him that "he is getting dressed", for him to return with his trousers inside out, or with his jumper on but no polo shirt, or else he just doesn't return and I go to get him 10 minutes later to find him engrossed in a Dr Who storybook... you get the picture. He usually manages to get it right-ish eventually, and I make a few adjustments lol.) Most of DS's problems are more to do with his behaviour and anger management tbh, but I want to give a full picture of life in the Strapped household.

Comments, please?

hi
i have just been awarded dla for my 14yr old ds. i looked on NAS they have guidence on exactly how to fill in the form for a kid like ours i found it invaluable i also suggest you make a timetable of everthing you do for ds during day including promting to do things more than once and put times next to it, i did this and you would be surprised at the things you do automatically without realising, then send a copy with form and also photocopy everything they get lost quite a bit at the dla place hope this helps

Strapped

Savvy_Sue wrote: »

OK, it's a long time ago, but I am pretty sure that by that age all of mine could do (a) as long as the clothes were where they expected them to be (in other words, not still in the laundry basket!) DS1 had 'issues' about needing to wear all the same colour (pants, socks, t-shirt, sweat-shirt and trousers all in red, for example) but accepted that on school days he had to limit this to matching pants and socks.

Even if they weren't quite at (a), mine were certainly at (b). DS3 was only 5 or 6 when I took him to school in his pjs, but that was definitely a case of 'hadn't chosen to dress when requested' rather than 'needed help to dress correctly'.

Likewise I would expect a child of 6/7 to be fully capable of sitting at the table and eating a meal, using cutlery, without assistance (although whether this art has been fully mastered by DS3 has yet to be demonstrated on a regular basis). Some help with cutting meat might be needed, but once that's given, while you might not want to take the child to the Ritz for afternoon tea, they should know what cutlery is for and be able to feed themselves using it.

Toileting: again would expect child to be normally dry/clean by day and able to wipe their own bottom, although occasional accidents may happen (and once more it's DS3 who resisted learning to wipe his own bottom and STILL uses an inordinate amount of toilet paper to do it!) Nights - can take MUCH longer, especially with boys!

I'm going to add road sense, although you didn't mention it. I think this age is too young to be out alone, BUT I would expect a 6/7 year old to know how to stay close without necessarily having to hold hands, to stop at kerbs and help look right and left. Some children don't have this ability and will rush on ahead, dash straight into the road etc, and DO require a lot more supervision than other children.

I do recommend getting help to fill in the form. If you have a local Welfare Rights office, they're ace at this. They will also know what's 'normal' and how to get the right information out of you.

Thanks a lot; I have found Welfare Rights and sent them an email asking for help. I'll also contact CAB on Mon because I'm not sure whether the public are meant to contact WR directly, or it's supposed to be done through CAB. Anyway, it sounds promising. Their website says that advisers "send an accompanying letter reminding decision makers of the law to help ensure they come to the correct conclusions :rotfl: ". Excellent. I know it shouldn't make a difference, but I think it's human nature that decision makers may examine all the information more carefully (and we have tons of supporting stuff to send) if they think you have professional advice and will fight all the way. (Another member of my family has applied for DLA in the past - they are physically disabled to the point of struggling to walk from one room to another and yet got turned down because they made a poor job of the form, so I am anxious!)

Do you think that it might be better to wait until DS has his Statement of SEN before applying, or shall I apply (inc reports from EP, behaviour support, school, paed etc) and mention that I send Statement later?

Strapped

PS I forgot to mention - road sense - yes, DS has NO road sense. He wanders along in his own little world, and just steps right out into the road so you have to have tight hold of him at all times. He's also known for trying to "escape" from school so they have to have an eye on him at breaktimes. BUT - again, I wondered whether the DLA response would just be that all children of 7 need to hold hands along a country road?

Sarahsaver

on my sons dla form i put that he needs supervision near roads and he is 8 last yr he ran into the road a few times, it IS an additional need;) especially as he ran in front of a lorry once

Savvy_Sue

Agree with sarah, the roadsense (lack of) IS an additional need IMO. As I said, you wouldn't let a child of 7 out on roads on their own, BUT most of us find that by that age they have enough sense not to need hand-holding all the time.

Strapped wrote: »

Do you think that it might be better to wait until DS has his Statement of SEN before applying, or shall I apply (inc reports from EP, behaviour support, school, paed etc) and mention that I send Statement later?

I would not wait for the SEN, because the two are not dependent on each other. He may have educational needs, without being eligible for DLA, and vice versa. But, more importantly, the date your claim starts (if successful) is the date you apply, so holding on until you get the SEN in writing isn't advisable.

seven-day-weekend

Just a quick visit to say that my son (29 next week), no longer has a mild obsession with Jeremy Clarkson (thank God for small mercies).

It's now Barack Obama! He approves of his decision to close Guantanamo Bay and is now busy finding out everything he can about the man.

However, Obama is a good role model for any young man to have so I shan't mind the ear-bendings so much if they are about him!

blue_monkey_2

HELP!!!!!!!

Hi guys, not sure if anyone is around to advise me. I've been called up the school as Ryan punched someone, has used the F and S word and has smashed up a bit of the classroom. I've got to go up the school shortly and speak to them and him.

The problem I have is with 2 boys, I've not said anything apaprt from last week where I was assured it was a bit of rough and tumble, but one of the boys punched Ryan in the face 4 times, so much so he had a small nosebleed the day after. I told the school and was told they had a small incident and that was it. I asked Ryan if the other boy got into troule and he said no.

Anyway, the problem I have is that if someone hits him and does not get reprimanded he then thinks that he can do the same. Likewise, these 2 boys use the F and S word - we do not use swear words in this house because we have children and we know how Ryan sucks words in. Anyhow, I have heard the mothers laughing outside the school about being called in as their children have used these words and they have got in trouble. If Ryan hears the words he will just keep on using them. Only he is the one getting in trouble for it now. Do I just keep on running to the school telling tales about these 2 kids? I mentioned to someone else that Ryan had been hit and someone said 'was it x?' so these boys have a reputation for this already and they are just 4 and 5!!!!

Can anyone give me some advice on how I can deal with this and what I say. I am hoping that there is someone around here before I leave that can set my mind at rest. I've also got to get a grant sorted for the front door which is single panel glass, as he started throwing things and yesterday threw my boot at it - luckily it was my Ugg and not my husbands steel toe cap.

Have I got more of this to come? He has started getting so irate lately. I need to know how I approach this and what I can say to the school. Fingers crossed someone is around, the forum is playing up this morning too. Thanks. x

shazrobo

hi blue monkey, firstly, (((big hugs)))
secondly i would definatly tell the school staff where your son is picking up these words, and also about the other boys punching him.
i know exactly how you feel, one of mine has just gone back to school today, after a two day exclusion for pretty much the same thing

shaz x

blue_monkey_2

Thanks Shaz, I do not like to go in telling tales but he seems to be drawn to these 2 boys, but at the same time I've seen them being mean to him. It is hard enough when your child is NT. I am shaking like a leaf at the moment.

I started an ASD/ADHD support group yesterday and I am going through the book now, just applied for a HAND card, I've called county about getting a new door so he cannot put something through the glass (oh, just remembered the back door too. Apparently someone comes out to assess your needs so I might mention having a path put in then too.

Rather interestingly, this group highlighted problems with girls, in that they are high functioning until they reach their teens and then all goes wrong and many of them get in trouble and are abusive because of the hormone change and they suddly cannot deal with the problems they have and cannot express their frustrations. It seems there may be a link with ASD but because they have managed to get through school they have not had any help and it coes out at home. By the time they are teens they are non-responsive to the help so it gets missed and they are troublemakers. I am definately going to the docs about DD - I'd rather it be nothing than something I miss that then cannot be dealt with later on.