Spartacus Stories

Here is a collection of Stories written by many different disabled people about the impact that DLA has on their lives. It also includes stories of fear about the proposed changes to personal independence payment.

Admin: benefitscroungingscum, Lucia and Lucy
to add your story email us at spartacusstories @ g mail . com (without the spaces) (your posts are there, just being scheduled throughout the day) (can you add how you want your 'name' to appear ta)

Tuesday, 17 January 2012

Julie's story #spartacusreport #spartacusstories

Hello, here's our story to publish if it's any use to you:

My son was diagnosed with autism when he was two years old. At that point, he was only able to eat custard, because it was both yellow and smooth. He couldn't tolerate anything touching his lips, so I had to carefully feed him his drinks on a tea-spoon. Meal-times took between two and three hours.

He couldn't stand in queues, so going shopping was a nightmare. As a single-parent I had no choice but to take him with me. He would lie down on the floor and sweep his arms and legs around. That kept him calm, but if there wasn't any room for him to do that he'd have a melt-down, screaming and crying. I lost count of the number of times I was accused of being a bad mother by members of the public. Our local post-office banned us from the premises - when I tried to explain he was autistic they didn't believe me.

At bed-time everything in his room had to be just so, or he'd have a melt-down and be unable to sleep. The curtains had to be open two feet apart, no more and no less. All the drawers had to be shut tight. Each and every toy had to be in the right box and each box had to be in the right place. Several times I woke up in the night to him screaming like he was being murdered - but it was because his shoes were the wrong way round on the floor.

He was terrified of showers and couldn't cope with sitting down in the bath. He counted drains in the street obsessively, amongst other things. He was terrified of drills, sirens, and other loud noises. He was also frightened of dogs, other animals and insects. He had no sense of danger and struggled to communicate with others, especially children.

As he's gotten older, with the help of some fantastic teachers and therapists, things have improved. He eats and drinks normally, comes shopping, sits down in the bath and his room is a tip like any other child's his age. He's even in mainstream school now, and, with help, is doing well.

But he can't go outside on his own. He tells complete strangers his name, age, address and other personal details, not understanding why that's dangerous. He thinks the staff in the supermarket are his very good friends because they speak nicely to him.

He walks out in front of cars, 'performing' looking both ways rather than actually doing it. He's still so terrified of dogs and flies that he leaps out into the traffic to avoid them - I've pulled him out the way of an oncoming car more than once.

He's been attacked several times in the play park by kids who don't know he's autistic and think he's 'weird'. Since he moved to mainstream school he's had ongoing problems with bullies.

He needs a carer, and while he continues to get DLA, that carer is me. If the government's plans go ahead and we lose the DLA, we'll also lose my Carer's Allowance and our Income Support. I'll be moved onto Job Seeker's Allowance and will have to take the first job that comes up - even though there's no child-care.

The last time I was at the Job Centre (I have to attend Work Focused Interviews) I asked my advisor if there was any suitable child-care at all that she knew of, because I'd like to get off benefits and at least work part-time if I can. Yes, she said, there's lots! Then she pulled out her big file, opened it up and found...nothing. 

My son is due to have his DLA reassessed this year. The doctor says he still needs it and will support our application. With the government's cuts though, who knows what's going to happen to us? I'm waiting in terror for that big brown envelope to come through the door.

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