Possible Disability Living Allowance for child

dalip

bluebird36 wrote: »

Thank you for your kind replies.

I am just still in between non believe and actual relief after the diagnosis. My son's behaviour was/is so extreme, but for years people (like the school, friends, other parents...) were implying that if I only would be stricter, or using a 'starchart', or not be divorced.... that he would not behave this way.

Nobody seemed to think that I have also a wonderful daughter, who behaves politely, is kind to others, learns well at school, is popular, helpful and generally well brought up. By me!

I approached the GP, the school, and various other professionals over the years and was always sent away after some condescending remarks along the lines of 'boys will be boys'. Meanwhile the behaviour became worse and worse. He is emotionally like a 3 year old (scared, unpredictable, quick tempered) in the body of a 10 year old (tall, strong, academically intelligent) who does not understand other people's point of view.
He is also sensitive to loud noises, certain textures on his skin, mostly only eats cold food....
The texture problem will show when wearing clothes. IHe insists on wearing certain schooluniforms, will not put on others and may destroy anything he feels is uncomfortable on him by just ripping it or cutting it.:mad:

And when he falls into a rage (which can now happen several times a day) nopossession is safe. I currently own 3 glasses, all others have been smashed.The hoover was thrown down the stairs and broke. The last washing machine was kicked to death... I think you get the picture....:eek:

It is very, very hard for me and my daughter to go through this every day. I hardly sleep, as he also suffers from sleeping difficulties and needs constand supervision. I work to earn enough money and pay all bills.
Many of the things I bought on the catalogue or on my credit card were replacements, for broken things. I lost £1000 deposit on my last rental property, due to the damage he inflicted...:eek:
I think I also spent some money to make myself feeel better at times, not huge amounts, a CD here, some books there, new shoes... but it all sums up.

I just cannot go on like this anymore. The impending BR is a first step to try and turn things around. My son's diagnosis will hopefully enable us to manage his condition as best as possible, even if this means earning less money. I know we can be happy on a small income, as long as we have enough to survive and time to repair all the broken things...

I am grateful to you for all your tips regarding DlA. I will contact the National Autistic Society and ask for help with the forms, as I have heard from several people now that they are very complex. :A

We have another consultant appointment this afternoon and I hope that the medication can be adjusted.

Wow - this was a long rant! I apologize.... is there a way to add all this to my diary? seems a shame to not add it to it... Anyway, thanks for listening! xx

OMG BLUE How tiring that must be but i bet you get rewarded now and again with a special smile from your boy,nobody knows what goes on behind 4 walls and that must be soooooo hard for you sometimes dealing with it on your own and there's me bleating about my OH and my family....well and truely ashamed of myself:o. I think you are amazing ,you deserve a second chance more than most. Keep at it girl.Dx

Gosh hope i did not come across as condescending,was not meant to be:o

restofmylife

Hi Blue,

My son is now 13 and was diagnosed with Aspergers at age 7, I would advise you to go into detail for everything and ensure you get a Hospital Letter and a letter from his school to attach to your claim for DLA. I get high rate for personal care and low rate for mobility. I went BR on 30/3 and did put it on SOA stating it was my son's DLA. I have not heard yet about IPA so I don't know if it will be included or not.
It was a great relief for me when my son got his diagnosis, I cried but I picked myself up and found everything out that I possibly could about the condition. A good book to get is "Aspergers Syndrome" by Tony Atwood - it became my bible. My son had a very hard time, no friends not invited to parties etc. I spent my life repeating myself with things like "stop making that silly noise" and "look at me when you are talking" etc etc and it had worked enourmosly! The best thing he ever did was pass the 11+ and got into a Grammar School which was the fresh start he needed as nobody from his primary school went there. He is now a Happy 13 year old with a lovely group of friends who have no idea he has Aspergers. Good luck to you and your lovely son and I hope everything works out for you. If you have any questions or need advice I am happy for you to PM me.

ROML

xx

bluebird36

Thank you for your kind replies!

Dalip - your problems with OH are just as important as mine! When things are going wrong with the ones we love, it can be heartbreaking and mind numbing. . . all we can do is try our best, keep on going and hope that things will get better somehow. My little boy does have so many wonderful traits as well, I feel almost guilty now for complaining, I love him so much; there are two sides to life with him and yesterday when I posted the difficulties just seemed too overwhelming...
You do not sound condescending at all, I know you care about me and so many other people on here and always try to help and be kind. You also deserve a break!:kisses:

JG- thank you for the link, will check it out tonight! Am presently reading like crazy about the condition and trying to find info on the net, so that is a real help! I wish you, your son and all your family much strength, especially in this stressful BR time!:hello:

restofmylife- how wonderful to hear that your son is fining life easier now and is in a great school and hppy. That is what it is all about, isn't it? I just want him to be happy and enjoy life and his childhood. I would like to get in touch via pm very much, have not had chance to find a support group or anything yet and to hear from somebody who is in a similar situation would be lovely! And 'Tony Atwood' is right here next to me!;)

restofmylife

Your very welcome to get in touch anytime

shadowdragon

I think the DLA and other Government bodies are skeptical about such illnesses as its easier to label a child with a learning/behaviour disorder rather than be strict/punish/give the child structure. I also think in the Education system as it is, it is impossible for teachers to punish bad behaviour so there only option is rather than having the ability and support to nip it in the bud at an early age, is to give the children labels.

I am no way saying that your child isnt Aspergers, its just some parents scream ADHD when all they have done since an early age is plonk the poor child infront of the TV and blame the schools, rather than actually doing things with them!! and this has a knock on effect for those children who really do suffer (as do the parents) with these illnesses.

Kinda off topic but ive seen it first hand.

bluebird36

Yes, shadowdragon, you are quite right, children need their parents guidance and love - and they need boundaries. But sadly not all children are healthy.

Do you have a child which is 'supposedly' suffering from ADHD? Then you will be very aware that ADHD and Asperger's Syndrome are not the same thing...
However, apperently ADHD can be part of a so-called syndrome mix which may affect people with Asperger's. Other co-morbid conditions include bi-polar disorder, depression, touretts and quite a few more. Obviously all caused by bad parenting and overindulgence of todays children... -

I find it astonishing how many people have this opinion of Autistic Spectrum Disorders, just because they do not understand what is involved.
Obviously not everybody will be informed about these conditions, especially if the person is not affected by it. But why then judge?
Indeed, if people who suffer from depression would be told that they
'scream depression' and 'blame their life', when 'all they do is sit in front of the telly', I think many people would take offence.

I think that most parents who are struggeling to cope with a child affected by an Autistic Spectrum Disorder would tell you that life with such a special little person is not easy. Often these parents are engaged with their children, more than the 'average' parent, as their children require constant input, due to their high anxiety levels.

I realise that you just wish to express your opinion on the matter, but such comments can be interpreted as hurtful by people whose whole lives are affected by their child's condition.....

dalip

hey girl you having a rough time.


Dont think shadow was getting at anybody, he was just saying a lot of people do judge by what they see,maybe we have all been guilty of that at some point. Human nature i'm afraid.

Even i may have at some point in my many years,seen a child misbeaving and thought that kid needs it's @rs spanked......not for a moment taking the time to think maybe there was another reason other than parental control:o..

If you read shadows post again you will see he is saying that too many parents do not control/correct their kids.....the teachers can not, so it is far better to label them(teachers/authorities and parents) with a disorder than to actually address the actual problem of their behaviour. Therefore genuine cases like your son are getting ignored and thrown into the same bunch. Then that leaves you without the help you so need.

Just my Opinion,from someone who knows nothing about such issues,but is on the outside looking in so to speak;)

bluebird36

hi Dalip, hi Shawdow,

yes, I probably overreacted a bit. It was late last night, so took the post a bit personal. I am sorry Shadow!:o

It is just so frustrating, because what Sadow has said is exactly how the rest of the population thinks. 'Have you tried time-out?' 'How about the naughty step?' 'Sometimes a good old fashioned smack works wonders!'

Of Coooooooooooooooooooooooourse I have tried time-out, naughty-steps, naughty-rooms, star-chart, take away all privileges, good old fashioned remedies;). Worked great with my daughter. Made things worse for my son.:eek:

More important than any DLA is that my child can access help at school.
But:

Teachers also have less and less time to cater for the individual. Inclusion was enforced by the government, special schools closed and parents re-assured that every child would get the help they needed at mainstream school. Even though the teachers and schools try very, very hard (guess what job I do) it is often impossible to adapt for all childrens needs. Especially as teacher training does not involve much training for Special Needs.
But now that there is a lot less specialist help available and parents like me have to battle with the Education Authority for statements (which guarantee children help in the classroom or access to a more suitable school). And guess what? The people who decide if my child can have support at school (to be able to cope with the curriculum and to eventually leave school with qualifications, so he can support himself and not be a burden to the tax payer) think along the same lines as the general public.

That is why I was a bit upset last night, please do not take it personal Shadow!

And now I will finish ranting about schools and predjudices - promise!:cool:

dalip

Hi blue I was posting that reply at a godawful hour this morn cause i could not sleep:rolleyes:.

My daughter works with little people of all shapes,,sorts and sizes and i got her to look at all three posts(shadows,yours and even mine,just in case i had made it worse)she said and i quote" I can see where shadow is coming from,can undertand your reply and see how you might have seen it the way you did".Thats the only problem with the written word as opposed to the spoken one. There is no greater culprit than me for taking things the wrong way,as "broken hearted" will tell you and for my words coming out different than i intend them too.

Shadow won't have taken offence,i promise.

Now you need a break.....how about the 3 pears on the 27th:rotfl:

bluebird36

:rotfl:I would love to Dalip! Apart from the kids all what is holding me back is my BR appointment on the 28th at 09.00 am, really musn't miss that! Lol!

Hope yu will have a drink there for me!:rotfl: