I have to post this quick thank you to a wonderful local charity called Jump Children's Charity
I quote from their website,
"JUMP is a Registered Children's Charity that supports children with life threatening health conditions to capture special memories with their loved ones. We do this by providing a professional photography service to deliver photographs and film in a range of formats."
In the summer of this year they held a party in the park for families of children with disabilities and life threatening conditions. We went along to that event and had a great time. We also had a photo shoot (like you do), with a lovely photographer who captured lots of pictures of us all together as a family.
Well, nearly all of us, for the most part Scarlett ran around trying to set off the fire hydrant. Still, it was a very memorable afternoon.
Recently I was asked to come and collect our photographs. Unexpectedly, what I received was a beautiful hardback book with all our pictures, entitled Zack's family.
Granted the best pictures were of Zack. Especially the ones with the charity mascot. Not that he's part of our family or anything, we don't live with a giant orange cat. At least I think it was a cat.
So thank you Jump Childres Charity, it is a gift that we will always treasure.
Monday, 29 October 2012
Thundercats got a bit too scary
Zack has a new seat.
An R82 Panda and its fantastic. He loves it, I love it, Scarlett loves it. A brilliant piece of equipment.
He can now sit again. He can go up to the table, all the way down to the floor. And it has it's very own table that attaches underneath the arm.
When we first got it I pushed it right down to the floor so Zack was at the same level as Scarlett. She stood in front of him grabbed both his hands and shook them in a little dance. They then spent the next ten minutes watching Thundercats together, with her resting her elbow on the arm of his chair.
Thundercats got a bit too scary so we turned it off. Quite violent those cat things.
Here's some pics of Zack in his new chair. (Note, we don't usually dress him up as a doctor in his chair.)
An R82 Panda and its fantastic. He loves it, I love it, Scarlett loves it. A brilliant piece of equipment.
He can now sit again. He can go up to the table, all the way down to the floor. And it has it's very own table that attaches underneath the arm.
When we first got it I pushed it right down to the floor so Zack was at the same level as Scarlett. She stood in front of him grabbed both his hands and shook them in a little dance. They then spent the next ten minutes watching Thundercats together, with her resting her elbow on the arm of his chair.
Thundercats got a bit too scary so we turned it off. Quite violent those cat things.
Here's some pics of Zack in his new chair. (Note, we don't usually dress him up as a doctor in his chair.)
 |
| Thundercat time. |
 |
| Okay, so it's not his chair but I've stuck it in just because. |
Monday, 8 October 2012
CBeebies Mash-up
I love watching the relationship between Zack and his sister develop.
This afternoon Zack was lying on the settee and Scarlett was watching her usual CBeebies mash-up, I popped upstairs to collect something. When I came back downstairs I found her stood next to him running her fingers idly through his curls whilst continuing to watching television. All the while Zack lay there with a huge grin on his face.
In fact she only has to go over to him and his big beaming smile appears, complete with amazing dimples.
Scarlett loves it when I make Zack stand up and pretend to chase after her. They are both in fits of giggles. And Zack loves it when we are all on the floor together playing with toys or reading a story.
I wondered how they might be able to understand one another or even develop a kinship if they can't communicate. In this short time I have seen that you don't need language to love each other, these two are quite happy just to be. Sometimes it's sad that he can't run and chase her, or even whack her over the head with a toy, you know like siblings do. But I have a sneaking feeling that even though he can't do all those things, Scarlett will gain a different understanding of the world, perhaps one that is more compassionate and patient. As for Zack, well he just gets to play big brother and has the bonus of knowing that there is someone else who loves him just as much as we do.
This afternoon Zack was lying on the settee and Scarlett was watching her usual CBeebies mash-up, I popped upstairs to collect something. When I came back downstairs I found her stood next to him running her fingers idly through his curls whilst continuing to watching television. All the while Zack lay there with a huge grin on his face.
In fact she only has to go over to him and his big beaming smile appears, complete with amazing dimples.
Scarlett loves it when I make Zack stand up and pretend to chase after her. They are both in fits of giggles. And Zack loves it when we are all on the floor together playing with toys or reading a story.
I wondered how they might be able to understand one another or even develop a kinship if they can't communicate. In this short time I have seen that you don't need language to love each other, these two are quite happy just to be. Sometimes it's sad that he can't run and chase her, or even whack her over the head with a toy, you know like siblings do. But I have a sneaking feeling that even though he can't do all those things, Scarlett will gain a different understanding of the world, perhaps one that is more compassionate and patient. As for Zack, well he just gets to play big brother and has the bonus of knowing that there is someone else who loves him just as much as we do.
The girl in the wheelchair nodded
I did something stupid the other day. Well, not stupid. I just didn't think. I made a presumption.
We were in a car park when I noticed a Wheelchair Adapted Vehicle next to us. There was a lady in a wheelchair, must have been in her twenties. She had cerebral palsy. She was with another lady who was possibly a little older, possibly her relative or carer.
I was curious about the vehicle and hung back to enquire about it. The able bodied lady was sorting out something in the front of the car so I smiled at the girl in the wheelchair, who smiled back at me.
I waited until the able bodied lady came back to the rear of the car to ask her a question about the vehicle. She answered me and at the same time, said to the girl in the wheelchair "that's right isn't it?" To which the girl in the wheelchair nodded and said yes.
I did what most people do. I who have a child that has cerebral palsy decided that the person in the wheelchair wouldn't understand my question. How could I have been so presumptuous? But that's what we do, don't we? We are all guilty of creating stereotypes in our heads, or assuming certain things about someone. For a moment, I realised how easy it is to slip into that assumption. For the rest of the day I was kicking myself.
It has made me think a lot about how, even though I live in this world of disability, I can be guilty of not offering the same understanding and courtesy that I would afford my son.
I am still kicking myself now. But you can be sure I won't do that again.
We were in a car park when I noticed a Wheelchair Adapted Vehicle next to us. There was a lady in a wheelchair, must have been in her twenties. She had cerebral palsy. She was with another lady who was possibly a little older, possibly her relative or carer.
I was curious about the vehicle and hung back to enquire about it. The able bodied lady was sorting out something in the front of the car so I smiled at the girl in the wheelchair, who smiled back at me.
I waited until the able bodied lady came back to the rear of the car to ask her a question about the vehicle. She answered me and at the same time, said to the girl in the wheelchair "that's right isn't it?" To which the girl in the wheelchair nodded and said yes.
I did what most people do. I who have a child that has cerebral palsy decided that the person in the wheelchair wouldn't understand my question. How could I have been so presumptuous? But that's what we do, don't we? We are all guilty of creating stereotypes in our heads, or assuming certain things about someone. For a moment, I realised how easy it is to slip into that assumption. For the rest of the day I was kicking myself.
It has made me think a lot about how, even though I live in this world of disability, I can be guilty of not offering the same understanding and courtesy that I would afford my son.
I am still kicking myself now. But you can be sure I won't do that again.
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