JUMP

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.

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.)

Thundercat time.

Okay, so it's not his chair but I've stuck it in just because. 

Who loves his bike?

Best therapy ever........

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.

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.

Not much crying

What do you do on a cold, very wet Monday morning? Why, get up at 6am and take your son to Manchester Children's Hospital of course.

Zack went in to get fitted with grommets to fix his glue ear that has remained since birth.  Essentially a little cut is made into both ears and the grommet, a little tube, is inserted. All the fluid and wax is also drained. All done to hopefully improve hearing.

I was really impressed with how efficient the hospital was, we were in by 7.30am and Zack was all done and ready to come home by 1pm. 

I am also super impressed with how amazingly well Zack did. Not much crying and it hasn't seemed to have knocked him back at all. As for his hearing well, I can notice a change in his behaviour he is jumping a lot more if you talk too loudly and he is turning to people's voices. 

I know that after a few months the grommets may naturally fall out but for now I am happy that it is giving him the opportunity to hear how we hear.

Dressed up as large rodents

Did I mention that we have been on holiday?

Yes, we have been on holiday. It all seems like too long ago now but we spent a few nights in North Wales, near Porthmadog I think. Another caravan holiday, it was brilliant. 

We had a fantastic view of the sea and beach (don't know what bloody sea it was I am rubbish at geography). Scarlett thought she had her own little house complete with easily accessible bedrooms and toilet. Zack was very happy with the place.

We took them swimming which they loved. On the first night we went to view the local scene. By scene I mean people dressed up as large rodents pretending to DJ. Zack managed an hour before the loud noise, bright lights and crowds got too much for him. As for Scaz, well one night led to me having to take my 18 month old daughter disco dancing every evening. May as well enjoy it now, one day she will want me or her dad to pick her up from around the corner and keep a distance of at least fifty feet from her.

It all went too quickly. Next year we may try abroad....hahahahaha......hahahahaha......that is both excited and demented laugh. I must be mad.

Here's some holiday pictures.

Caravan living

Post swim session.

One of our many views

Beach ready

Portmeirion

Happiness is...

Is it disco yet?????

Still not managed to extract Zack's bike pictures. Still not giving up.

Stupid bloody woman

As I type this post I am waiting for photographs and film of the Pants on his new bike to download on to the mac. 

It is normally quietly and efficiently compliant tonight the stupid thing is having a hissy fit and taking it's time so this may turn into a post about something completely different and not at all related to bikes.

Yes. This is turning into a different post. 

Here read this.

Costa coffee kicks us out of disabled tot

In a way I am kind of glad that something like this has happened. Why? For weeks I have been listening and watching the build up to the Paralympics. Followed by the coverage of the sport. A lot was said about how it will help the nation become more accepting of disability, how it will only be positive for people with disabilities. Why it could even make us more tolerant, more inclusive. 

Yes. It was amazing to see such achievement. And it was great to see coverage of the Paralympics (even if it was Channel Four with ads). We could even feel a bit jublilant that disability got such positive coverage in the media.

And then this. Back to what we all know but never say. Some people are not that tolerant. We don't like different, we are unsure of not the same, it makes us uncomfortable. 

I am now used to the stares I get when I park my backside down in some coffee shop. {Which is now no longer Costa bloody Coffee......Starbucks will be jumping with glee.} No people aren't staring at me, but Zack, when I pop in his little feeding tube to his button in his stomach. I then happily push down some medicine and a bit of water. All the while enjoying my coffee and the general ambiance of said venue. 

Why I've even fed him his blended diet in a restaurant. You see, I used to give a rats ass what people thought. But then one day I saw a family in Debenhams, one severely disabled girl was being tube fed quite happily by her mother. She didn't give a rats ass and that day I thought why the hell should I be embarrassed about feeding my son. It isn't his fault that he can't swallow safely, it isn't his fault that he doesn't understand the complex movement needed to chew and swallow food. He needs food, he needs water. So he has a small tiny button in his tummy, it's no big thing that's how he eats and drinks. 

From that point on I didn't care where I was I just fed Zack. When people stare I stare back. But if that ever happened to me, if I was ever asked to leave a restaurant or coffee shop because of a complaint from a customer. Well....lets just say I might need to spend an evening in the cells. It's beyond shocking what happened, it's intolerant, it's unjustified and it just widens the gap between us and them.

What does that say to other parents in a similar position? Are we all to hide are children away because it makes someone else uncomfortable? Pathetic. So next time you are out and you ever see a child being tube fed, or having to use a suction machine, or whatever medical intervention it is they need to survive. Don't stare. Accept the differences that makes us special. Either that or you'll get a Tall Latte over your head. Stupid bloody woman.

And you, you tube feeding parents. Never be ashamed. 

And you, Mac. Start working. I'm still waiting on those pictures.

Applause, very good old people

I have blog guilt. 

Not posted for a while, but I have been busy. It's hard work trying to entertain two small creatures. I have discovered that Play Doh holds the key. Well for the smallest one anyway. 

Zack loves squishing it and Scarlett, she likes to sniff it, walk round with the pot, sniff that, then attempt to eat some of it. 

Pants has been a bit poorly. He developed some high temperature, vomiting, upset stomach bug. The doctor gave us some antibiotics just to be safe. Safe of what? Probably to ensure that if he did have anything chesty it didn't get worse or develop into anything nasty. No idea what it was but it seems to have disappeared as quickly as it arrived. 

He's been in a lovely mood these past few days. Very smiley, very happy, very responsive. We even left him with Nanny/Grandad Price. And Nanny Price did all of his afternoon food on her own, medicines too. She was extremely pleased with herself. We have to give some credit to Grandad Price as he mixed up Zack's food in the blender. Ahem. Stand up, applause, very good old people, proud of you. I can say that, I know they read this. Hahahaha.

Zack's trike has arrived. My, oh, my it's fantastic and he loves it. But I am not going to say too much now, I am going to film him on it for his blog. So watch this space.

We are off on our hols next week, North Wales, not too far but far enough for it to be a change of scene and a break for all of us. Excited. Yes. 

Final update, Zack went to see eye lady. Usually he reserves all of his ability to see for home this makes me look like a deranged liar when I tell people what he can and can't do.  However today, what a brilliant little man. She actually saw him, watch, follow, smile at and laugh, yes laugh at the toys. She was really delighted with his progress. She still thinks he is a cheeky boy....I've said that all along. But that just makes me love him all the more. 

Six long weeks

It's the summer holidays. The "Summer Holiday" season has always eluded me, I didn't really get why people would go on about it. I get it now. 

Six weeks of having both children to look after, for six long weeks. I think I got used to having three mornings with just one child when Zack went to nursery. I understand why summer could be so difficult, thought it would be nice to have six weeks of nothing. It also completely throws your routine out of the window. 

On the plus side some nice things have happened. Dan is off for a week which means days out all together, and days to ourselves. 

This weekend we had Scarlett christened. We were really pleased to have it at the same church with the same Curate that Baptised Zack. It was a lovely day and Zack was brilliant. Scarlett was, as usual, fabulous. Here are some pictures for those of you who haven't already seen them on Facebook.

Looking fine and dandy

Don't think she rates his outfit.

Nanny

We have also been making use of the fantastic Warrington Sensory Play Centre in Woolston. It's a soft play area especially designed for children with Special Needs. During the holidays they have been running a session on a Monday for a couple of hours called Dolphins (no idea why we have that name but no matter). It's for children with complex needs. As well as the usual soft play things they also have a sensory room, an area for use with ultra violet light, a quieter dark area with two projectors.  It really is a brilliant facility for the Warrington area. 

Scarlett loved it. But the Pants, he thought it was brilliant. They have a very large soft play slide. I let Zack go down on his own. He shut his eyes the whole way down then laughed his head off at the bottom. This called for a lot of slide activity....any excuse to play really. 

The Trolley Buddy

Going the supermarket is quite easy with an able-bodied child. 


Get out of the car, get a trolley, stick kid in trolley. Go shopping. Get kid out of trolley. All done.


Not so easy with a child that has cerebral palsy. They don't sit very well in the trolley. They tend to fall forward, or to the side or even fall out of the trolley. Nope, you can't just pop off to the supermarket. 


Then, I spotted something developed by a fabulous charity called Cerebra 


I have mentioned them before. They helped us out with a grant so that we could pay for private Speech Therapy for Zack. I swear if I win the lottery they will be getting a huge sum of money. 


They have a development section within their charity that design products to help children with disabilities access things in life that most mainstream kids take for granted.


A parent had asked them to design something for their child so that they may use a supermarket trolley. They did. They came up with the Trolley Buddy. It is so simple. A little portable seat that you take with you to the supermarket. You just pop it into the trolley, strap it round the back, pop the child in, strap them up and taaaadaaaaaaaaa. Child goes supermarket shopping. 


I phoned them to see if I could buy one. They sent me one free of charge to trial. Have I told you how much I love this charity. They have a waiting list for them and are looking for a commercial partner so that they may produce them. So Tesco, Sainsburys, Morrisons, Waitrose, come on buy the Trolley Buddy. Have them to hand behind your counter. Help us mums and dads out. We just want to take our children shopping.


Here's Zack testing his out. 

In me Trolley Buddy

Slightly Leaning in this isn't just any supermarket trolley

He loved his shopping visit. He had a smile on his face all throughout the store. Only hitch was at the end. Zack's tone is quite tight, his legs got stuck trying to get him out of the trolley.  He needed two people, one to lift him and one to try and get his leg to bend. He couldn't stop laughing. His poor legs are all bruised but he found it highly amusing. Might need to re-look at that. The other hitch was he needs just a little bit of side padding to stop him leaning. However a slight prod now and then and he was back in the centre enjoying the ride. The next test will be sitting next to his sister in a double trolley. Think she'll like the company though. 


Thanks Cerebra. You are brilliant.