Sally's World

Deion had the wheelchair clinic today to get some adaptations on his chair. As usual, it reminded me of the summer that Aaron and Deion were finally at the top of the list for electric wheelchairs...

All I could think of was the freedom they could have, the mobility…then, hang on a minute, think of the crushed toes, the bruised shins, the hospital visits, the wrecked furniture!

Okay, those things weren’t as important as independence, so we took the boys for a test drive, they were mad lunatics as we would expect, a bit of competitiveness got thrown in to cause a bit of damage, and there you go.

When we strapped Aaron into his chair it was so funny. The guy who does all the adjustments and safety stuff on the chairs hadn’t lowered the speed of Aaron’s yet, so no sooner was Aaron strapped in, than he was out the door like a shot.“QUICK…AFTER HIM,” we all yelled as we flew out the door and into the corridor after him. People were flinging themselves into doorways to get out of Aaron’s way, pot plants were flying.

In the end I did some sort of flying rugby tackle, grabbed Aaron’s hand and prised it off the controls. We went back in the room, someone got me some plasters for my elbows and knees, and the wheelchair guy said that it was probably best if we lowered the speed on Aaron’s chair a bit….YOU THINK!

The electric chairs were ready a few weeks later; the boys had to pass a road safety test first to make sure they wouldn’t be dangerous on the road…o.k.! Not that they would be going anywhere alone anyway. At my request, they didn’t programme them very fast, after all, I had to keep up with them. I had visions of me running up the road behind the boys, arms waving, yelling ‘STOP!’ as they drove off into the distance.

To be fair to Aaron and Deion, these chairs are a lot harder to control than you think, they react so quickly to the slightest movement on the joy stick, and the boys did really well in them, they were weaving in and out of cones, reversing round corners, they were careful, hardly ran anyone over and caused minimum damage.

When we got home, I explained to Jordan and Robyn that these chairs were not toys. They were not to go in them, or try them. I did not want to see anyone else in the chairs except for Aaron and Deion. “ARE WE ALL AGREED?” I said. “Yes Mummy,” they chorused.

If only Jordan and Robyn hadn’t run out of the living room a while later shouting “DADDY’S FALLEN OUT OF AARON’S CHAIR.” Honestly, what hope have I got of teaching the kids anything? I walked in the living room, my ‘stern mummy look’ firmly on my face, Dave looked a bit sheepish, and the kids were all falling about laughing. “I just told the kids that they are not toys, what on earth are you doing?” I asked Dave. His excuse, would you believe, was that he wasn’t actually in the room when I explained to the children not to play in the chairs.

There was me lecturing the kids when I should have been telling the bloody biggest kid of all.

Deion reminded me of that today, so I thought I’d share it with you. The electric chairs really do make a difference to the lives of children like Aaron and Deion. Deion may be a bit of a demon driver, but his smile at being able to get about by himself says it all.

See you soon. Drive carefully!

Sally and Deion xxx

Hi guys, back again...So a few people went onto the Heavens Special Child web site and asked me about Deion. It may not have been clear in the video, but be fair, we had a lot of info to get over in a short amount of time(and all the umm's and ermm's took up most of that!!). Deion is my youngest son and yes, he is also a wheelchair user, many people asked me if Deion has the same condition as Aaron, but he doesn't, it is completely unrelated.(What are the chances...I know).

Deion was born at 28 weeks and has cerebral palsy as a result. But don't go feeling sorry for him, he may be in a wheelchair, but he has a cheeky streak equal to none. And he has absolutely no qualms about using his disability to his full advantage. When his brother or sister get told to tidy their room or take their plate out, he is often heard muttering "sucker" under his breath.

We go bowling a lot as a family, and god forbid Deion beats you, as he will bellow, "you got beaten by someone in a wheelchair" at the top of his lungs...and believe me thats loud. And if you didn't feel bad enough getting your butt wooped by a ten year old!!!!

I guess it's not bad though, considering that when he was five days old, he had a brain hemmorage so extensive that the doctors told us he would never talk. I'm always telling Deion that I'm going to go back to those doctors and demand my money back. You can honestly never shut the child up!!! he has an opinion on everything and voices it loudly and often. but mostly he laughs about everything, and it's a real cheeky laugh too.

Despite his physical limitations, Deion goes to a mainstream school, is as bright as a button and has tons of friends. At the moment we are embroiled in a nice big fight with Lewisham Education about his secondary school transfer. They need some advice on what 'full inclusion' actually means.

But as many of you said in your e-mails, life with special needs kids often feels like a constant fight, if its not schools, it home adaptaions, transport or benefits. I have never quite got my head around why 'the powers that be' insist on making life more stressful than it already is...but hey, I stopped trying to apply logic to it all a long time ago.

I hope that I was able to answer your questions and my e-mail advice was helpful.

Several people were asking for more info on the dolphins, so I'll get back to you tomorrow with that.

Take care

Sal xxx