Someone I barely know asked how BBG was going, so I let them know the rough outline, further on in the conversation they let out a sentence about the perks of being a carer and having a disabled child. Here is what I wanted to say.
Sorry it is rather sarcastic but I just needed to write this and get it off my chest
Free money and car!
Wow we get funding from the government for our disabled child. When she turns 3 we will probably also be able to have the mobility part of the DLA.All this money, and we can swap the mobility part towards a shiny new car! Wow!
We need to go to appointments nearly every week, resulting in me having to give up full time work to go to part time work. I get careers Allowance but considering I was on roughly 7x more a month then I am now, it’s a drop in the ocean. But yes I get free money because my child is disabled.
We have to buy sensory equipment which is expensive. We have to buy certain clothes due to her limits in changing. We have to go to London once a month, which means we have to spend out on train tickets and lunch out etc. Her life is a lot more expensive then our other children in so many ways, but yes we get free money ‘thrown’ at us.
Big parking spaces
At the moment thankfully we can get away with parking in the Mum and baby parking area but soon we will be able to park in the magical blue badge area.
We can park wherever we like, and in some areas the parking is even FREE! However where she won’t be in a wheelchair until 5 (not known for sure but pointing this way) people will just see the special pushchair and wonder why we have a blue badge. Or we will have to fight over getting a space as some idiot has parked in the disabled area to pop into the fish shop as their only going to be 5minutes etc.
Free days out!
As a carer, some places let me get in for free! Yep you read that right as a carer I can get into certain places free! However, think about the last places you went on a day trip… ours was to Hyde Hall, it had beautiful path ways and was completely accessible until you wanted to do any of the kids things, the craft tent was in the middle of a field (not wheelchair friendly) the playground was just climbing equipment on bark, so again not Disability friendly. My daughter is intelligent, she is technically globally delayed but her intelligence is there. So when she is bigger she will see people having fun in the craft areas and wander why she can’t get to them, I think people forget that children can be physically disabled, or if they haven’t forgotten they just assume they don’t want to do what normal kids do. This is not the case. I will say going to the zoo is pretty disabled friendly and there are generally good places to go but a lot of places just aren’t set up for disabled children.
Yup that’s right, BBGs condition may mean she needs to go to a specialist school with equipment that better suits her needs then a mainstream school.
Wow a school with small classes, a school where kids learn in physical fun ways with lots of ‘cool’ equipment. Not having to do the school run as our nearest catchment specialist school is 45 minutes away and BBG will get a school bus there and back! That’s right my girl will with 90% certainty go to one of these schools, with the better equipment and the small child to adult ratio, but there’s a reason and I wish all my kids would go to the same school as actually it would make my life easier.
I get that half this list makes me sound sarcastic but having someone actually say to me, ‘you have a disabled child, you’re never going to have to work again with all the stuff you get’ got me rather angry.
My daughters life is full of uncertain times. We have been told they don’t know if it’s life limiting so make the most of every birthday. I hope they find out that all she needs is one pill and she will live a full and happy life, but it is most likely not the case. I am stressed beyond stressed, I feel conflicted all the time, should I give up work to make the most of watching not just BBG, but all the kids, grow up. Should I go back to work full time so that financially we are better and to be able to provide all the once in a life time holidays possible. Am I spending too much time on BBG and making the other kids resent her.
Caring for disability is hard. The only free money thrown at me I ever wanted was to win the lottery, not to have a disabled child. Yes my life may look amazing, getting carers Allowance, so being paid to look after my child WOW!!! But I wouldn’t wish this stress on my worst enemy. My daughter is AMAZING and I wouldn’t swap her for the world, her disability is a part of her and has made her the determined girlie she is today. Please don’t just assume caring for disability is a free wage packet with extra support. It is so much more and a lot harder then people realise.