Take it back
I've seen a few posts lately, on social media, of people's opinions on raising a disabled child. People that have no idea what it is like to raise a child with special needs and shouldn't have an opinion unless they have walked in these shoes. I've sat back and read people's disgust at how easy families get it, how some milk the system, and how much those families get. Each comment I read feels me with pure rage. So here I am talking through my experience and how "easy" we have it.
The first comment that angered me was "but they get everything! A nice brand new shiny car and money." First of all the car that has been adapted with lifts and sliding doors and runners to put a wheelchair isn't free. It comes out of the child's dla money. Money that a child is entitled to. Why? Because it is expensive to raise a child with special needs. The special toys, clothes, bedding, nappies and wipes. Hospital trips and stays, petrol etc it all adds up. A car that is adapted for a wheelchair is a lifeline. Have you ever tried to take a wheelchair on a train or tube to get to Great Ormond Street? I have once, never again. My child has numerous hospital visits a month. To be able to get him there the car is a lifeline. Without it we would be lifting him and his wheelchair and trying to squeeze them into a car. The shiny new car you see as a bonus I see as a step back. I would hand it back in a heartbeat if it meant my boy could sit unaided in a normal chair. No he has to be strapped in so when he has a seizure and flops forward he can still breathe. Free car? Take it back.
The blue badge comments "why do they get to park in a disabled bay? And then take up our parent and baby bays?" Have you ever tried to lift a disabled person out of a car? And the wheelchair? Being closest to the shop in case your child has a seizure so bad they completely wet through their clothes and bite through their lip. To be closest to the door in case a noise or something upsets them so much they create and you have to leave? Free badge? Take it back.
Carers allowance, "why do they get money to care for their own child it's wrong!" £65 a week for 24/7 care. Your life is no longer your own, any time you have free you are fighting the system for appointments, for nappies or just for the care your child needs. You have to give up your job, the carers is there as you can no longer work. Let me explain what care means, it means leaving your sobbing other children behind whilst you spend weeks apart in a hospital. It means feeding and changing your child all day and night. Giving your child medicines, taking them to therapies and numerous appointments all over. It means dedicated care, every single need is now on you. How I wish I could hand it back and have my boy happy and healthy. To not see them struggle to breathe, to turn blue through lack of oxygen. To nurse your child after they spilt their head open again due to another seizure. To try to work out why your child has been crying all morning, as they can't tell you. To give up your career for your child and their needs. I am not complaining, I love my son, but this is the harsh truth of it. Your comments have made me be this brutally honest. If I put my child in care it would cost ££££ a week, yet you begrudge me £65 a week. Take it back.
The one that I find most upsetting? "If a disabled person is on the bus and I am on it with my pram, I am not moving they can wait for the next bus." I mean really? Would it take that much for you to fold your pram up? I am not saying disabled people come first, each to their own. I am saying have a heart, think about how much effort it was for them to even get to the bus stop. I bet they would give up their disabled space just for a little bit of easiesness in their life. Take it back
The nice new exstention you have on your home, yes amazing, and has made my life so much easier thank you! After years of lifting my child up the stairs, seeing him fall down the stairs, injuring myself lifting him. We now have a bedroom for him all on one level. No more lifting him in and out of the bath, no more bad back and pulled muscles, he can now have a shower in his chair. I am unashamed we have this, why should I be anything other? It makes our lives that bit easier. My son is with me forever until the day I take my last breath. If this is what it takes for me to be able to care for him at home I will have it. Would I swap it for my son to be able to use stairs to not need help in every aspect? I would love my son to not struggle every day of his life. Take it back
"That child just needs a slap." Heard this and seen the disapproving looks in people's eyes when your child is having a meltdown. Who knew a slap could cure a whole heap of disabilities?! The lights, the noise, it can over stimulate a child, causing a huge outburst, a slap is not what is needed. Reassurance is what is needed. It's not enjoyable to be judged and to have comments directed at you. Take it back
"It is cruel to keep a child like that alive." Really? How would you know after a five minute impression? Do you see the joy this child brings? The little ways he works out how to get to food, the new words he has just learnt to say after 14 years of trying. The cheeky laughter as you share a joke only you both understand. The snuggles you both share with no words spoken. The lessons they teach you in just being them. How much he loves life and has fought to be here? Take it back
Unless you have had experience of having a disability or caring for someone with a disability do not judge. Words hurt, we have feeling too. Every comment every snigger or every stare it stays in our heart. What you think you know, you know nothing. My child is my world, my life is not what I thought it would be, I am a carer I am a wife and a mum, I am no longer me. I am a better person because of this special person who has taught me how to live, how to get through each day how to laugh and how to be kind. Take him back? Never.