bid Report post Posted November 3, 2005 Just out of interest, I was wondering whether anyone has a child with AS who doesn't need DLA?? Bid Quote Share this post Link to post Share on other sites
jomarie Report post Posted November 3, 2005 I don't think I need dla for M, whether this situation changes as he gets older is another matter but for now I think I'd feel a fraud applying for it. I consider myself very lucky at times, as M doesn't have many meltdowns, he has no physical problems as such apart from getting him to sleep at night, & even then he just reads quietly until he can nod off. M's problems & issues are far more subtle & unfortunately thats what breaks my heart, he knows he's different & its really starting to hit home with him now (he's 9 this month), & no amount of dla will make that easier for him or us Quote Share this post Link to post Share on other sites
stressed out mum Report post Posted November 3, 2005 Hi Bid Yes my son has traits of Aspergers but we have not applied for DLA. He goes most places on his bike and leads a 'normal life' apart from poor social skills and organisation skills. Quote Share this post Link to post Share on other sites
bid Report post Posted November 3, 2005 Hi Is your son very passive and quiet, do you mind me asking? Bid Quote Share this post Link to post Share on other sites
jomarie Report post Posted November 3, 2005 he's very passive, I certainly wouldn't describe him as quiet & i'm sure his teacher wouldn't either. he does have problems knowing when things are totally inappropriate (things he says etc). He trys so hard to be like all the other kids too Quote Share this post Link to post Share on other sites
stressed out mum Report post Posted November 3, 2005 Hi Bid Not sure if you meant me or not Yes he can be very quiet and passive unless you put him in a situation which is loud and then he can be extremely loud. We saw the psyc today so I will post the outcome under meds Quote Share this post Link to post Share on other sites
lancelot Report post Posted November 3, 2005 Yes, ours has a dx of Aspergers and fulltime help at school (he's 9), and though home life is stressful, I can't honestly see how DLA would make it less so. (Full-time shoe-finding assistant, perhaps? OCD specialist permanently on call?) I do realise that we're very lucky to make enough to live on even though I'm very part-time/freelance. Up to this term I had little choice, as C would never have tolerated the available after-school childcare. Now, though, he actually wants to go! Quote Share this post Link to post Share on other sites
smiley Report post Posted November 3, 2005 (edited) For me it has come down to money....i have had to give up one of my jobs as it was causing chaos for M. It was the best decision i made - everyone has noticed a difference in him . It did however, leave a huge hole in my bank account! I considered DLA when M was first diagnosed, but as i was doing well financially i felt i shouldn't apply as i didn't need the help. One thing that did hit me whilst i was filling in the form was how much help M needs, over and above an NT child. It was quite depressing/upsetting - and he is a 'passive' child. But my 'passive' child self-harms, becomes withdrawn to the point of curling up into a ball, rocking, totally unaware that anyone is near him. The forms are going in the post at the weekend...so i'll keep you all posted! Edited November 3, 2005 by smileymab Quote Share this post Link to post Share on other sites
witsend Report post Posted November 3, 2005 Hi Bid - I suppose it depends a bit on how you define 'needing' DLA. I guess if you're just talking money then those who are well off do not really 'need' it as such but if you mean how many AS kids meet the criteria then I think it must be the vast majority in reality. It had never really crossed my mind to apply for DLA until I found this site and at first I was pretty sure we wouldn't get it I even felt a bit embarrassed about applying. But when I started to fill the forms in it made me realise just how much extra time and support my son needs compared to other kids his age. I often think we don't realise how much we support our kids in so many ways and actually getting DLA is like some kind of recognition of this if nothing else, plus the extra money does come in handy, I know my working hours are restricted becauseof my son. I do tend to think now that a diagnisis of AS should qualify automatically for DLA, then it should maybe just be the rate which is decided on individual circumstance/need. But I also think kids with AS should all have statements too! God I'm getting to be an old radical eh! Luv Witsend. Quote Share this post Link to post Share on other sites
LizK Report post Posted November 3, 2005 Not talking about me as we get DLA but have a friend whose son probably has some degree of AS. It's never been a massive problem for him or the family, they have made a few adaptions to every day life to accomodate him. Likewise with school where he's found a niche at school, a couple of friends and doing well. My friend has always known her son was different but it's only since hearing me talk about my son that she's realised her boy may well be on the autistic spectrum. However her son's differences are not really causing any major problems that can't be dealt, she's found things have got easier as he's gotten older too so she's never pushed for a diagnosis let alone DLA Lx Quote Share this post Link to post Share on other sites
stressed out mum Report post Posted November 4, 2005 Hi Liz K This lad sounds a lot like my son, although he doesn't have any true friends. I think our problems were escalated when he was younger because of the witch being the headteacher at infant level. Now he is so layed back he is almost horizontal sometimes Actually I think that my teenage daughter is causing me more problems at the moment. Is this just being a teenager or is she rebelling because I have had to give my son more attention (she says more than her) over the years. Quote Share this post Link to post Share on other sites
minerva Report post Posted November 4, 2005 he knows he's different & its really starting to hit home with him now (he's 9 this month), & no amount of dla will make that easier for him or us is there a site for the kids to get chatting? I know that my son would love to meet children like himself, he finds it a little easier since he read "freaks, geeks & asperger syndrome but still finds it hard. Especially whilst he is out of school! He doesnt find it easy to make friends but he always seems to want to.....do you think your son would like to be a penpal to him? Or anyone elses for that matter! Quote Share this post Link to post Share on other sites
mum22boys Report post Posted November 23, 2005 I've spent weeks thinking about this question and as a result delayed asking for a DLA form. I am interested however that no seemed to mention the fact that the DLA is for the child. I will be putting in a claim, ok some days aren't too bad but others are terrible and I know that M's life is quite restricted by his problems. No money will ease this I agree but I feel the money (if we get awarded any) is for him, not me. I will be saving all the money for his future as who knows how badly he may need it. If I didn't claim I would feel like I had let M down. Does that make any sense???? Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted November 23, 2005 I've got a wierd situation. I don't think M needs DLA but his paedetrician does so I'm applying for it. I'm also applying for DLA for myself because I have Lupus. My hubby reckons my need is greater than M's as I take more time off work due to my own disability than for my son's. Daisy Quote Share this post Link to post Share on other sites
phasmid Report post Posted November 23, 2005 I know I promised not to post yesterday just have a quick look in but I had to answer your post Daisy. My wife also has Lupus and I know just how bad things can be with this awful condition. Mrs P was awarded DLA some years ago now, I'd apply if I was you. Yes it's only money, and no, it can't take the lupus away or even make it easier to live with but the money is there to claim if you qualify for it. As Tesco like to point out in their adverts...Every little helps! Quote Share this post Link to post Share on other sites
helenl53 Report post Posted November 23, 2005 Hi - I just wanted to make the point that - when our kids grow up and leave school, they may need to have support financially and if you apply for the DLA, you are in a way protecting their right to DLA in their own right when they are Post 16. I can't remember where I read this, but it does make sense. Best wishes Helen Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted November 24, 2005 Thanks Phasmid, Certainly looking at applying for myself but you're supposed to fill it in on a bad day and what's the last thing a Lupus sufferer wants to do on a bad day - well fill in 56 pages of DLA form for a start Helen: Good point, will now dig out M's form and get further than part 1! Daisy Quote Share this post Link to post Share on other sites
Lindyloo Report post Posted November 25, 2005 I would not say we actually 'Need' the DLA as such. I certainly don't think it is a hugh help with day to day life. But what we do use it for is 'treats'. We use the money to fund days out, trips away and that sort of thing. we really struggle keeping Luke occupied at home, so being able to aford to just take him out somewhere is a great help. Linda x Quote Share this post Link to post Share on other sites
Clarkie Report post Posted November 25, 2005 Diverting the thread here a little I don't know anyone else with Lupus - and in reading this thread have found out 2 people do. I was dx with RA at 24 and SLE when I was 3 months pregnant (13.5yrs ago). (Am now just over the 40yrs) I take immunosuppresants and live on Co-Prox (how dare they try and take my drugs away)!!!!!. I have never even thought of claiming DLA and don't know really what I would claim for. I have claimed for R recently and am doing the "saving for the future" thing for him. It's very nice to meet some fellow SLE people. Hope you're managing OK. Sorry for the diversion. Clarkie Quote Share this post Link to post Share on other sites
julieann Report post Posted November 25, 2005 Hi Bid, My son has dx AS and Dyslexia. He will be 16 on Monday. He rides a bike, motorbike, doesn't have fine motor skills difficulties. The form seemed to be issues like dressing,washing,walking, eating all of which he doesn't have a problem with.I didn't think we would be eligable for it and so haven't applied. Quote Share this post Link to post Share on other sites
board Report post Posted November 25, 2005 Thanks Phasmid, Certainly looking at applying for myself but you're supposed to fill it in on a bad day and what's the last thing a Lupus sufferer wants to do on a bad day - well fill in 56 pages of DLA form for a start Helen: Good point, will now dig out M's form and get further than part 1! Daisy helo i have sarcoidosis and a child with aspergers and asthma i have never meet a person with sarcoidosis and i all so got fibromyalgia its hard being unwell and haveing a chid with as so all the best to you jill Quote Share this post Link to post Share on other sites
bid Report post Posted November 25, 2005 Well, of course now I know why he doesn't need DLA... Found out on Wednesday that he's a very quiet, self-contained little boy who is quite anxious...but he's not on the spectrum!! Thanks all for replying to my original question. I would also add that because I was my eldest's son's full-time carer until he was 15 we really needed his DLA financially. Caring for him has also meant that my husband hasn't been able to be as ambitious in his career as he might otherwise have been...at times we have been really hard up. Even silly things like the fact that he went through clothes and shoes far more quickly than another child. Now that he is at a residential special school and post-16 his DLA goes into his savings account...and I've been able to get a job! Bid Quote Share this post Link to post Share on other sites
minerva Report post Posted November 27, 2005 Now that he is at a residential special school and post-16 his DLA goes into his savings account...and I've been able to get a job! Bid i'm glad you said that! I was worried that it may be stopped if he attends a residential school as you wouldnt technically be classed as him main carer any more. With him being home 24/7 its amazing how much extra i need! Stupid things like Gas & Electric are way bigger than they would be if we were both out all day! PLUS you should see the amount the child can eat!! It amazing that he's still tall & skinny (lucky b*gg*r, doesnt get it from me!!) Bus fares are stupidly expensive down here too, just to go into town �5 is gone before we even get anywhere!!!!!!!! Even with the extra help i still find that outgoings exceed incoming *sigh* Now at least when he eventually gets back into school i may get a chance to break even & then save for him too!! Quote Share this post Link to post Share on other sites
