Aspergers/ASD support thread

Mandles

blue_monkey wrote: »

Yes, you need to write in everything. We have the same with my son, we cannot leave him unattended either. I know what you mean and it gets tiring telling people which is why you need to find a support group, it really will help you a lot.

My son has behaviour problems, ASD, a form of ADHD called Oppositionsal Defiant Disorder because they will not diagnose and treat ADHD until age 7, social and communication problems. He has not got a specific ASD diagnosis as we have not seen the paediatriction for that yet, just the ADHD doc (who diagnosed the ASD) and another doctor who tested his general developement (growth etc...) all of which is fine and he is far advanced in his practical skills, not with his social and communication skills.

You need to write everything, this is why you need to make a start, go through and do the bits that you can and then each day go back to it and do another section when you get a spare half an hour. I did one question at a time, one a day some days, and got it in 5 days before the cut off date, sent by Special Delivery eo ensure it would arrive and that I had proof of it being sent. Just in case. And photocopy it.

Fill in the bits that you can. There is a long section at the end where you can add how life is like with him. They contacted my son's teacher and his doctor so these will also back you up. However insignificant you think it is write it in. Make notes of how life is through the day as you take for things for granted, they become 'normal' and so when you think about doing it write it in a notebook, carry the notebook everywhere so you can do it. That helps.

But make a start on it now and get the bits filled in that you can, some bits will not be relevant so you can disregard them, get some post it notes and stick them in the pages you still need to fill in and do one day at a time, one question at a time. Read it over and over and in the end you'll get there. But the earlier you start the more you'll remember so it is important not to sit on the form once you have it. Make a start and you'll get there. It is hard going and depressing so please do not do it all in one day.

And no doing it before Lost. You need your wits about for that, remember

You are so helpful and so nice.Also waring about it being depressing has been taken in and i won't do it all at once as i know it is so easy to get depressed by the behaviour when you sum it all up. Thanks(dont worry, sunday evening(lost) is a total child free, form free zone!)

I have downloaded the form help. many thanks.I also rung autism help and they are sending me a help form and welfare number.
I am stuck on number 5 already. for aspergers would you tick;
has a mental problem.
has severe learning
has a long term illness

Would you tick all 3?

Also physical disabilities . He can walk and everything on his body works ok but because of his behaviour he cannot walk along the road as he would just suddenly run in the road or stop or freak out if he hears certain noises or just plain does not want to walk(does this count as physical difficulty then?

both severe learning disabilities and severe behavioural problems(behavioural yes but as he is pre school it is had to know as he can count as he has a great memory for copying things others have said like 1. 2 .3. 4 etc so again??

I am eating my words when i said form looked simple. If it wasn't so important i would breeze through it simply.

blue_monkey_2

Number 5. Yes, tick all 3.

Physical: NO, he can move all of his body. These come under the learning difficulties as he cannot 'learn' these things as ordinary kids do.

Last one: Yes. Learning is not just about school learning, it is also learning how to communicate, socialise, etc...

PS. I am only nice when my kids are at school or in bed, LOL, other times I am usually crying in the corner..... Keep smiling though.

blue_monkey_2

Oooh, Can I ask a question to the others here - when your child has been to paeds/CAMHS etc... can I ask what you did about siblings? I am not sure whether I speak to the doc about getting her referred or whether I wait until my appointment with paeds which is 'supposed' to be coming for March 23rd but I've still not had anything.

I am having issues with DD that are apparently 'not normal'. Sometimes, just sometimes, I get sick and tired of not being able to take my eyes off them for a single minute. DD drew on her bed last night with Biro, she hunted out the only pen as I had confiscated all the other writing things because she drew on my (beige :eek: ) carpet, doors and windown sill, which have not got to be repainted. Sometimes I feel I have a toddler in the house with the things she does.

But as I said to Madles: Keep on smiling (til 3.15pm anyway!!)

Strapped

Mandles wrote: »

You are so helpful and so nice.Also waring about it being depressing has been taken in and i won't do it all at once as i know it is so easy to get depressed by the behaviour when you sum it all up. Thanks(dont worry, sunday evening(lost) is a total child free, form free zone!)

I have downloaded the form help. many thanks.I also rung autism help and they are sending me a help form and welfare number.
I am stuck on number 5 already. for aspergers would you tick;
has a mental problem.
has severe learning
has a long term illness

Would you tick all 3?

Also physical disabilities . He can walk and everything on his body works ok but because of his behaviour he cannot walk along the road as he would just suddenly run in the road or stop or freak out if he hears certain noises or just plain does not want to walk(does this count as physical difficulty then?

both severe learning disabilities and severe behavioural problems(behavioural yes but as he is pre school it is had to know as he can count as he has a great memory for copying things others have said like 1. 2 .3. 4 etc so again??

I am eating my words when i said form looked simple. If it wasn't so important i would breeze through it simply.

Mandles, for part 5 I ticked:
- has problems with speech or language
- has a learning difficulty
- has a mental health problem
- has both a severe learning disability and severe behavioural problems

although the Welfare Rights woman said that they may not accept the last one as Aspergers is not generally considered a "severe learning disability". BTW, she also advised me to put "severe behavioural problems, autistic spectrum disorder under assessment" in Part 4 rather than Asperger's as DS doesn't have a formal diagnosis yet, and apparently "Asperger's" is the kiss of death for DLA because the DWP's guide for decision makers says that Aspergers kids can need no more care than a "normal" child (like to see them spend a few hours with DS lol).

ETA: Do please get someone to help you - I would've spent hours agonising over the "minutes each time" and "times a day" questions, but the Welfare Rights woman told me not to bother with a lot of them, just to give a good picture in the main box, or to write "several" or "many" times a day where appropriate ("at least once" for part 12), or "throughout" the day etc.

shazrobo

blue_monkey wrote: »

Oooh, Can I ask a question to the others here - when your child has been to paeds/CAMHS etc... can I ask what you did about siblings? I am not sure whether I speak to the doc about getting her referred or whether I wait until my appointment with paeds which is 'supposed' to be coming for March 23rd but I've still not had anything.

I am having issues with DD that are apparently 'not normal'. Sometimes, just sometimes, I get sick and tired of not being able to take my eyes off them for a single minute. DD drew on her bed last night with Biro, she hunted out the only pen as I had confiscated all the other writing things because she drew on my (beige :eek: ) carpet, doors and windown sill, which have not got to be repainted. Sometimes I feel I have a toddler in the house with the things she does.

But as I said to Madles: Keep on smiling (til 3.15pm anyway!!)

i would speak to the doctor about getting her referred, and mention the things that you think are 'not normal'

reading everyone's replies is making me feel normal, and i'm not the only person in the world, who can't leave there kids alone for two minutes without something happening

shaz x

Savvy_Sue

For bumble-bee, some people find Parent Partnership very helpful, I think you just google that plus your area. I found IPSEA very helpful when I needed some advice about school.

mandy.h_2

i cannot stress enough how much easier filling in a dla form is using the guide on nas website they virtually tell you what to write for each question i kept a timetable of our day and sent a copy with form

blue monkey i to had to have discussion re siblings needs and was to had to go via gp referal not a problem as our gp is excellent. she was not as but was a suffere of circumstances caused by ds canhs did counselling and now much better.

to be truthful i htink she has as traits but they do not cayse her difficulties so not pushing things while she is settled

Bumblebee67

Many thanks Savvy-Sue I'll give them a try

Amber_Sunshine

Hi all, remember me?

I am now more convinced than ever that i am an Aspie and am finding it so hard to cope with normal life.

I had a dreadful experience with my last flatmate and am now in temp accommodation. Was flathunting with a friend as he is the only person I trust enough to live with, I just can't cope with other people, but looks like that plan has fallen through. I can't afford my own place and have less than two weeks to find somewhere. I don't know what to do, I feel like I will never be able to cope in this world and take care of myself.

blue_monkey_2

Just a quickie, I wanted to share what happened last night.

DD came into the kitchen to get her tea and my husband said 'what have you got on your lips?'. I looked at her and she had drawn on her lips with blood red MARKER PEN.......... I was speechless and told her to try and wipe off as much as she could as she was reading in assembly the next day........

I guess this is because I had to confiscate all of the make up she had as she used it to decorate her toys, furniture, hair, etc... everything except her face. I feel a bit mean but it goes in the bin now because I cannot trust her to have things like this. People say I should trust her with it but how can you when every time you try you find it smeared over the house??