Happy Father's Day

Now I know there are lots of amazing, brilliant Daddies out there. But I think Zack and Scarlett have a Daddy like no other. And as it's Father's Day I just wanted to do a little blog about their Daddy. He pops up now and then in these blogs, usually with a humorous quip or a comedic moment but in the dark times he is our strength.


Zack's Daddy was with him at the very beginning of his life. When he was born and put into the incubator it was Dan who got to see him first. He was there when the medical team were trying to stop him fitting. It was Dan who sat with him and stayed with him throughout his first hours and it was Dan who went to him when I couldn't. I sometimes wonder if that bond between the two of them was what kept Zack with us. And I am forever thankful to him.


Sometimes it might seem like Zack prefers me. I do, after all, spend the most time with him and he is a mummy's boy. But Zack adores his Daddy and vice-versa. He is brilliant with him. And is often a voice of reason and logic when I sometimes leap over to panic mode. He is fantastic at doing all the horrid bits like taking him to get injections, or down to theatre when he has a General Anaesthetic even sleeping in hospital chairs when he has had to stay overnight. 


He is Zack's biggest protector and probably chief of his fan club. I think that if Zack could list the favourite things about his daddy it would go as follows:

1. I love it when my Daddy plays the Silly Bears tickle game.
2. I love it when my Daddy pretends I am on a car race track when I am in my standing frame
3. I love it when my Daddy plays rough and tumble with me.
4. I love it when my Daddy does my bath time.
5. I love it when my Daddy lets me cook with him.
6. Most of all I love it when my daddy and I get up on a Saturday and it's just us and we have our breakfast and watch Raising Hope. It used to be Eastbound but that's finished now and Mummy said the swearing wasn't suitable for my ears. 

And now there is Scarlett who funnily enough has now gone from begin Scazzzzzahhh to Scarly Bum. His Princess and the second lady who makes his eyes light up. The other being one of the Kardashians, not sure which though!!!!

So Happy Father's Day Daniel Gould. Thank you, our crazy, different, special family wouldn't be the same without you.

XXXX

oh yeah, you're all b@£%^*!s

Our second trip to Rainbow House and Zack was back in the classroom for his conductive education lesson.


This time he decided to pull out the big guns and moan throughout the whole process. At one point he was the only child moaning. He hated it. I think it is now known to him as Torture School. (It's not actually that bad he's just a bit of a whinger sometimes).


This time we decided to try some arm splints on Zack as he tends to keep his bent (arms that is, not splints). The splints wrap around his arm and keep them in a nice straight position. Oh dear, oh dear, oh dear. Cue extra moaning. 
On top of the crying he tried to go to sleep (another trick he uses to get out of things). Nope, wasn't getting out of it that easily, we did some crawling at that point, this woke him up. Again not happy.


When he was sat on his little chair at the table (very cute, reminds me of baby bear waiting for his porridge), he moaned, stopped and looked round at everyone. I think he was plotting how he could murder each one of us. Having forgotten he was crying, he started again as if to say, oh yes, I was protesting about something, what was it now, oh yeah, you're all b@£%^*!s.


Tell you what though, on the way home, not a peep from him. He sat with his arms straight all the way back (no splints, God I'm not that bad), didn't look at me once. I got him out of the car and he would not speak to me. Had his lunch and then went to sleep. 


Later, when he was back talking to everyone, he was really switched on, relaxed and as if to show off he kept his arms straight. Dan then got worried that he couldn't bend them any more. He can, Dan was just being ridiculous.


We have the splints to use at home so he gets used to them. I tried them today. He didn't mind, in fact when he has them on and is lying down his arms go up and out to the sides of him. You can do his overhead stretches very easily. I think he is getting a lot of sensory feedback from wearing them which is in turn making him realise where his arms are in relation to his body. 


Dan came in and saw them on him. Initial reaction was aaaaaah little man. Then it was, well, they are doing him some good aren't they? That's what we need, tough daddy.

He can't do it as quickly

Oh the differences in child development. Scarlett is making it abundantly clear how easy it is for children that don't have a brain that is moth eaten to develop along a normal path.


Sounds like a I am being incredibly cruel about Zack but they are the facts. You look at his MRI and it's patchy all over. Little bits of missing pieces where the cells have died. The injury that will affect him for the rest of his life. I can quite easily sit here and type this without getting emotional as it doesn't upset me. I can't change what happened, I can only accept what happened and live our lives with as much fun and happiness as is possible. I think we are doing a pretty good job at that. Zack is a happy little man.


However, it is wonderful to see Scarlett just carrying on developing as a baby should without much effort at all. And good for her, she is doing brilliantly. 


The other day I had her on the changing mat and I was playing with her legs I put her feet flat on the mat and she lifted her bum up and pushed herself backwards. I did it again and she repeated the same action. She loves this game. It makes her smile a lot. She waits for me to say Go and then she does a massive push. Easy. 14 weeks old and it's a piece of cake. 


Zack loves this game too. He waits until I say push, concentrates really hard and then pushes back with his legs. He can't lift his bum. He can't do it as quickly and he wasn't doing it when he was a baby. But he gets the same enjoyment out of it. He understands the concept. 


I suppose what I am saying is their differences highlight the struggle he has. But I don't sit their and think oh how sad for Zack it just isn't fair, why is life so unfair, why can't he be normal, I wish he was normal. Nope I think ah well, Zack is doing what he can in his own way and I don't think I can love him any more than I would if he could do what Scarlett does. I love them equally. And they are both fabulous. 

Zack went straight to sleep

I've been looking at getting Zack a sleep system. 


At night he tends to curl up in a foetal position and his hip rolls over to the side. He has always slept on his side at night and probably finds this position the most comfortable. It isn't helping his posture. Some children with Cerebral Palsy require sleep systems to put them into a position to make them more comfortable and to lesson any future damage that could be caused through their posture during sleep.


With this in mind the physio has organised some reps to bring out some sleep systems to look at. The first of which we saw today. It was Peacocks snoooooze system. Take a look at their PDF, if only to see the very, very creepy doll they use to demonstrate the system.


Snooooooze System



Basically then this one is a roll that goes around Zack and between his legs, along with a funny star shaped pillow. 


The rep demonstrated the system using not scary puppet, but scary Zack. 


As if to demonstrate how snuggy and comfy the system was Zack went straight to sleep. No moaning and crying (which he is doing at the moment in bed) but fast asleep. Not bad, not bad at all. Question is though when he is moving about at night and trying to get to sleep he may knock it all off so little unsure about that one. 


The rep left with his sleep system. Undeterred Zack continued to sleep whilst I chatted to the physio. 


Physio left. And Zack opened one eye and then woke up. I see, was this all just a con so he wouldn't have to do any physiotherapy? Sometimes I wonder if his avoidance techniques have gone to new levels.


I'll get him tomorrow, Conductive Education again. I can feel the pout forming already.

This school educated them

We went to look at another school for Zack. This one was in Manchester available to children from the age of two years up to 16 years.


Now this is going to sound a bit odd but what struck me about the place was how every effort was being made to educate the children. Well, yes you may think it's a school, that's what they should be doing. What I mean is I have seen some schools and it just felt like whilst there was a certain amount of teaching going on, it seems based on creating sensory experiences for the children. This school educated them. They teach them to communicate, they teach them to read, they have music lessons. I was impressed. It was efficient. 


They didn't seem to accept that just because a child is labelled as having special needs that they are incapable of learning. They appear to make every effort to get every child to learn. 


Zack was clearly interested in what was going on. Doing his usual looking around our shoulder to check things out. You know, make sure he would find it to his liking. In one room the children got very excited about Scazzzah and came to have a look at the baby in the pram, who looked shocked to have a crowd. Zack was not happy about this. He glared at his sister. Something was not right, he's usually the centre of attention. He soon had an abundance of fans and all was right with the world again. 


We still have a few more schools to visit but so far I do like this one. 

Do you not know I can't walk?

Zack now has a place on the Conductive Eduction classes at The Legacy Rainbow House


We have had to wait a good while as there wasn't a space available but now we are in and last Friday we went along to our first session.


Zack was not too impressed that he had to get straight in to doing some work. He likes to soak up the atmosphere, people watch, check things out. No such luck here we were straight into waving hello and sitting cross legged on the floor. 


Then we had to roll (Zack not me) to the benches. More stretches and singing. Zack protested by moaning a lot. Then it was standing, full on crying at that point.


Back to the mat again to put our shoes on and have a quick drink of water. A happier Zack but still pouty. 


Zack was then sat on a little wooden chair and held on to a bar in front of him. Errrm yes this was okay for a minute as it gave him the chance to take a look at the ladies. But a few minutes was enough he then got his own way and sat on my knee whilst he tasted chocolate and looked at his mouth in the mirror.


After saying good bye we were in the corridor with Zack stood upright holding on to the back of a small chair whilst the teacher moved his legs to step forward. At this point he was completely bewildered by the whole thing and if he could speak I am sure he would say, "What the bloody hell is all this about? Do you not know I can't walk?"


I thought it was brilliant. Zack thought it was too much like hard work. Tough. We are there every Friday morning, little Pants is going to have to suck it up. Tough mummy strikes again.

Colin

Sadly with the nice weather and the beginning of what I hope will be a good summer is some sad news.

Another of our furry family members has been killed on that stupid, quiet country road outside of our house. 

Colin. Yes Colin. No other name would suit him, went missing on Thursday we searched everywhere all over the front, through the fields and nothing.  Colin was semi-feral, he always did his own thing, but occasionally liked the odd cuddle when he let you. 

Saturday afternoon and two young boys knocked at the door whilst I was out. They found Colin in the bush at the side of the road. He had been hit and killed by a car. We must have walked past him several times but we didn't spot him. I am thankful to those two boys who so nicely knocked on every door in the street to find the owners, so now I won't think the worst, or imagine him trapped somewhere, or attacked or suffering. He went quickly, well I hope and pray he did. It had happened on the morning he went missing and now he rests where the others lay. 

Goodnight Colin, another family member gone but never forgotten.