Aspergers/ASD support thread

Savvy_Sue

Sue-UU wrote: »

Could easily have been a link of of this thread, the more I think about it the more sure I am it is. Will certainly have a search through again tomorrow Sue. Sleep well and let's hope it'll come to you.

Night.

Sue

You didn't put the link though! :rotfl:

klb wrote: »

Is it this one?

http://forums.moneysavingexpert.com/showpost.html?p=9815183&postcount=1699

Thanks but that's not the one I'm thinking of: it was definitely a fairly detailed post on this site.

Found it!

And in fact blue_monkey has almost certainly already seen it, because it's on a thread she started about her DD. However others may find it useful.

Sue-UU

Wonderful news Sue!!! So pleased you managed to track it down as it was a great piece! By this thread I meant this one "Aspergers/ASD support thread"

Not to worry as the main thing is, you have it!

All the best.

Sue

blue_monkey_2

Good evening everyone. Hope you and the little (and not so little) ones are keeping well.

Not much to report really, I am frazzled from the Xmas break and looking forward to some me time when the kids go back to school. That is after I have done all the chores that I have not been able to do since the kids have been off school.....

I've just been thinking about the posts on here - sue, funny how you found my post about DD - that was a funny thread to be honest, it is so hard to put into one thread what you do and do not do people assume you do nothing.

This week has seen the stabilsers off DS bike - of course, he wants them back on again - but he is great at riding his bike, DD got a new bike as the one we bought her last year has too much of a reach for her to be able to learn to ride it but she is doing OK but needs to build up strength in her legs.

New Years eve we got to a party (family) and Ryan started playing up, running around getting under the food table, hitting the other kids, I did turn to my husband and say if he is being like this we are going to have to go home. I am getting to the point where he is too big for me to hold and control, he has so much strength - some new people there thought he was being naughty until I explained - then this lady went onto explain how her friends older son has ASD and it has given her more understanding of children who are 'naughty' or having tantrums.

We have 2 rooms in the house - one for where we watch TV and another that is for the Wii, toys, rats and kids TV. Today while out shopping we found a light and mirror ball and both the kids LOVE it, it is main operated so my husband had to put it on the ceiling and buy more wire to get it all working but they spent 2 hours playing in the dark having a 'party' and doing 'strictly come dancing' with the radio on, it has a spinning mirror ball and spinning coloured lights so the flecks change colour!! It cost just £12.99. Fantastic. It was in Aldi if anyone else is interested.

In regard to the control thing I was talking about, I guess he does seem to control everything - and DD to a certain degree. She still has horrendous tantrums, is this 'normal' for a child of 6?

The other thing I wanted to ask is if anyone else has applied for a Blue Badge. I was waiting for the DLA forms in Feb but this weekend realised I have to apply to the council and it is nothing to do with DLA, I have printed the forms out but wondered if I was wasting my time or if anyone else has a BB. I need to send my letter in and was just wondering if I was wasting my time really.

So that is it, just pondering on stuff, getting by, we have been tied to the house all over Xmas except for a trip to town and to the park to get the kids riding their bikes. Only probelm is I cannot take them on my own on account of DS dropping his bike to the ground and running off from the park. Luckily hubby was there so I went off after him while he stayed with DD.

Savvy_Sue

I know a friend has Higher Rate Mobility and I think a Blue Badge for her child who is quite severely autistic and can't be 'trusted' in the fresh air IYSWIM. I'd say it was worth a try, I guess the thing to stress is how much extra work is needed to keep your DS safe, as compared with a NT child.

mandy.h_2

blue_monkey wrote: »

Good evening everyone. Hope you and the little (and not so little) ones are keeping well.

Not much to report really, I am frazzled from the Xmas break and looking forward to some me time when the kids go back to school. That is after I have done all the chores that I have not been able to do since the kids have been off school.....

I've just been thinking about the posts on here - sue, funny how you found my post about DD - that was a funny thread to be honest, it is so hard to put into one thread what you do and do not do people assume you do nothing.

This week has seen the stabilsers off DS bike - of course, he wants them back on again - but he is great at riding his bike, DD got a new bike as the one we bought her last year has too much of a reach for her to be able to learn to ride it but she is doing OK but needs to build up strength in her legs.

New Years eve we got to a party (family) and Ryan started playing up, running around getting under the food table, hitting the other kids, I did turn to my husband and say if he is being like this we are going to have to go home. I am getting to the point where he is too big for me to hold and control, he has so much strength - some new people there thought he was being naughty until I explained - then this lady went onto explain how her friends older son has ASD and it has given her more understanding of children who are 'naughty' or having tantrums.

We have 2 rooms in the house - one for where we watch TV and another that is for the Wii, toys, rats and kids TV. Today while out shopping we found a light and mirror ball and both the kids LOVE it, it is main operated so my husband had to put it on the ceiling and buy more wire to get it all working but they spent 2 hours playing in the dark having a 'party' and doing 'strictly come dancing' with the radio on, it has a spinning mirror ball and spinning coloured lights so the flecks change colour!! It cost just £12.99. Fantastic. It was in Aldi if anyone else is interested.

In regard to the control thing I was talking about, I guess he does seem to control everything - and DD to a certain degree. She still has horrendous tantrums, is this 'normal' for a child of 6?

The other thing I wanted to ask is if anyone else has applied for a Blue Badge. I was waiting for the DLA forms in Feb but this weekend realised I have to apply to the council and it is nothing to do with DLA, I have printed the forms out but wondered if I was wasting my time or if anyone else has a BB. I need to send my letter in and was just wondering if I was wasting my time really.

So that is it, just pondering on stuff, getting by, we have been tied to the house all over Xmas except for a trip to town and to the park to get the kids riding their bikes. Only probelm is I cannot take them on my own on account of DS dropping his bike to the ground and running off from the park. Luckily hubby was there so I went off after him while he stayed with DD.

i would consider applying i have a friend whose son is asd and has real trouble with pains in his legs, apparently this is quite common with our kids so she has a blue badge, i am in process of trying to convince ds that he needs a bus pass so when he gets on wrong bus its not such a panic as to how he will get home. really im thnking of in the future and college etc he wants to go and im worried already over the logistics. he has not gne to school alone yet and hes in yr 10

shazrobo

i think different authorities vary on blue badges, i tried to apply for one, and was turned down, because we only get lrm, but a friend, in another area got one. good luck with trying.

seven-day-weekend

Hi Mandy, my son is useless at finding his way round and could quite easily get on the wrong bus, although at nearly 29 he's evolved better coping strategies then when he was 17 and going to college.

Could you (or someone) maybe do the journey with him before he starts college until he's 'got the map in his head' as my son puts it? Or maybe write down the bus number, where the bus stop is for getting on (show him), same for getting off and various landmarks along the journey? Maybe that will help him cope better.

A funny story about my son, when he was 17 and had to go to college for the first time, let's call it Chav College. I did the above for him (where to get on and off etc) and also said to him that if he found himself in the town centre he had gone too far, just get off the bus and walk back the way the bus had just come from and he would come to the college.

Well at about ten am my husband (who had a morning off school for some reason) received a phone call with a plaintive and panicky voice on the other end of the phone saying 'I don't know where I am'. (How he expected my husband to know where he was I have no idea, but dads always fix everything,don't they, even when you're a scared seventeen-year-old). Anyway, Ben said he had done what I said when he found himself in the town centre and had in fact come to a college, but it wasn't Chav College, it was Lazybones College. This college is in an entiirely different town!

Anyway, by asking him the names of some nearby shops and landmarks my husband was (thankfully) able to work out where he was and went to fetch him.

It turns out our son had gone to the right bus stop to get on the bus, but instead of getting the local bus, got the one to Birmingham (15 miles away) which stopped at the same stop and the 'town' he was in was a Birmingham suburb and not our home town.

We didn't know he has AS then, but we did know he had difficulties in these things, so we made sure next time he knew the actual bus number and not just the stop! (I didn't realise the Birmingham bus stopped there otherwise I would have put the bus number down.

So, hope this cheers you up and gives you a bit of a laugh! We all (including our son) still laugh at it!

Strapped

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?

Savvy_Sue

Strapped wrote: »

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?

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.

looby-loo_2

7 Days a week. My son did a smilar thing when at school. He went 3 miles past the stop and walked back. Forgot he hd mobile in his pocket