# Not disabled "enough"



## lozzy21

Any one else's child fall into this category? All the support groups around here are for parents of children with complex needs. Iv even had crap from my family about how much DLA she gets. I don't control the rate they decide to give me! All because cognitively she is where she should be and then some and the fact she can walk she's not as deserving as some one who can't.

Sodd the fact walking causes her pain, sodd the fact that half of the time she is unable to walk up and down stairs, if she needs the loo in the night we have to carry her. Fuck the fact my nearly three year old can't run about with her friends, a trip to the park means feeding the ducks and a few pushes on a swing while every one else charges up and down slides. Niamh can see and understand what she's missing out on. 

Oh and apparently I should just buy her a bigger pram or a wheelchair because that's what her DLA is there for but her friends child who cannot walk at all shouldent have to pay. 

Sorry for the rant but I'm getting sick of close minded people just using their eyes and not their brain.


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## DonnaBallona

:-(

I feel for you Lozzy. I'm desperate for some support for Jude's issues too, but can't find anything remotely similar to what we're going though. 

ignore ignorant people, it's so hard anyway without their input too.

xx


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## sequeena

Yes as he doesn't look disabled!


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## mummy2o

I can understand where your all coming from. A boy at my son's school, is no worse than my son, yet she claims for everything going, making out he's worse than he is. They are both 6 and DS has autism and I think he's still being tested, but its also likely to be autism, ADHD or both. She got a new car, he got a new pram as she refuses to make him walk, yet when with my son and going on a walk around the village he some how managed it, she's also trying to claim higher DLA rate and mobility which I think is BS as he isn't as bad as my son and I have no need to claim higher rate as he isn't effected in any shape or forum.

However, at the end of this school year they have both been asked to go to special schools to cater for their needs. So we looked round a few and picked one purely on language delays as it suited DS to the bone. Yet she wants to send him to one, which has an ASD bit attached, which only takes very mild cases of autism. She's saying he got in, so my thought is you lied your ass off one way or another. One minute he's worse than DS, next he's better you can't have it both ways. I really hope he goes, then a few months in he has to transfer schools as its not suited for him. Trust me if you met this woman in person you'd think what a bitch she was half the time to.

So the point of my rant I find it disgusting that she is able to get everything given to her on a silver plate where as you guys need the help are struggling.

Sequeena I understand where your coming from completely. My son looks normal, but I get such funny looks by people if he decides to have a melt down for whatever reason. One time I was in a soft play centre and a woman was there with a physically handicapped child so when I told DS he couldn't have any sweets at the time he asked he had a melt down and she told me I should be able to control my child as he was fine. I soon gave her a piece of my mind and told her not to judge.


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## sequeena

Thanks mummy2o when T melts down I get awful looks he's covered in bruises from head butting I was at my wits end it was only his portage worker that noticed it was a sensory issue and now I'm going to talk to his occupational therapist about how they can help him (the ot was originally for his thumb).

I'm so glad T doesn't have a physical disability but the one he has is tough on everyone and with his non sleeping every day is a battle. People assume because he's so over friendly that he's an absolute angel and there is nothing wrong he's just a bit lazy.


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## lozzy21

Thing is though what does disabled look like? You would think with the Paralympics last year some of the stereotypes would have gone. Niamh does have some behaviour blips, which I get shit of family for too but who wouldn't if felt rubbish and in pain.


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## deafgal

Even disabled can look abled (sometimes due to aides or accommodation)..for a short period or w8th limitation. I mean, with my cochlear implant, I can pick up a few words over the phone. ..but longer and more complex conversations, I get lost and flustered. Sometimes to the point I can not concentrate anymore (even those simple short words get distorted because my brain is tired from putting pieces together like a puzzle...hearing does not come natural like seeing.of course, when people are tired, all they see is blurs.


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## AP

It took me so long to get used to this. TBH, I just don't discuss DLA with anyone. Even hate talking about it online. It's no-ones business. 

mummy2o this woman you're on about must be cut from the same cloth as someone I know. It is terribly frustrating, but soon it's gonna bite them in the arse when the assessments arent matching up with the child!


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## lozzy21

I don't think I'm going to mention it in the future, I dident even think she would get the lower rate let alone what she does get. What pissed me off is me and OH have always worked, never been on the dole and the only "benefits" we have claimed are child benefit and tax credits yet where given shit for clamping something where entitled to when we have been putting into the system since we left school.


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## maisie78

I totally get this. We have even had people say to us 'oh but she's _just_ blind'! You try having one of your primary senses taken from you and then say you are JUST blind! :growlmad: 

We have also worked since leaving school and never claimed benefits and yet the jealousy of some people when they realise we get DLA for her. Do they seriously think a few quid a week is worth this? That any if us here wouldn't give every last penny we had to make our children not have a disability?


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## lozzy21

Maisie my dad is blind although he did not loose his sight until he was 22/23 so I understand just how awkward it makes things.


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## Tiff

Ugh, I get "but she doesn't LOOK Autistic" all the time. The best one? She doesn't look like she has Autism because she's cute. :wacko: Uh excuse me? So only "ugly" kids are Autistic???? :dohh: That would offend me even if my child didn't have Autism. :growlmad:

People speak before they think. I know the standard response is to just smile and nod, but you can only do that so many times before wanting to scream!


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## mummy2o

Maybe it's only cute kids with autism as I also get that comment a lot with DS.

There are lots of cute kids without autism, I don't mean to offend anyone by this.


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## Tiff

For what its worth, I knew what you meant! :hugs:


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## Tor

:hugs:

I didn't even know you could claim anything tbh but if your entitled then of course your going to if its going to help improve your kids lives.

Can I ask how people found out they could claim anything? Noones mentioned anything to me apart from his nursery funding and 1-1 funding for that. Not sure I would claim anyway at the moment as he doesn't need anything but just wondering for the future?


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## sequeena

My hv and children's disability team told me about dla for children and put me in touch with welfare rights.


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## Tor

Thanks, no ones mentioned anything so probably not entitled to it.


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## lozzy21

No one mentioned anything to me ether but she's entitled to the higher rate for care and mobility.


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## kit10grl

yeh quite often everyone involved assumes someone else will have mentioned it resulting in no one mentioning it. We were late in claiming it as we didn't know we should as no one had mentioned it until months after we could've started claiming. Its worth checking they can only say no, in which case you are no worse off


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## lozzy21

Snap, we could have claimed months before but I just had it in my head that she would end get it. I only decided to try because the her hospital appointments were getting more frequent and at £40 a time in taxi's and train fare we thought it was worth a try.


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## BlueHadeda

I'm late onto this conversation, but just had to add that I also feel like you ladies!!

My daughter had the mildest form of neural tube defect. Like the very, very, very mildest. Only 1 in millions get that form. My best/only support base for it, was people with Spina Bifida. Some of them with the worst possible forms. And to no fault of them (they're the best bunch of ppl ever), I also felt like my daughter's dissability just isn't bad enough! Even one doctor said that my daughter's foot problems isn't disabling enough, so it's impossible for her to have an occult tethered cord. Well, turned out she did indeed have an occult tethered cord. Why couldn't we just be grateful her feet aren't as badly affected as it could've been? :shrug:

Worse is, I thought those days are over. Now, some of the specialists actually suspect she has a chromosome defect. And at least twice, some other doctors we saw for various reasons, replied to this news by saying "oh, but her facial features aren't bad enough to be 22q11.2 deletion syndrome". Urgh!! Here we go again. :dohh:

Do people really think we make these things up for attention or because we _want_ our kids to have these dissabilities? :growlmad: :nope:


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