Switcheroony.

This is Zack using his new switches and disco ball.  Please ignore my high pitched shouts of glee, but I did get very excited at how well he did with them. Here's the educational bit....using switches helps him to understand cause and effect. (Plus it's all the more evidence to show he understands what I mean, what he has to do and what happens when he presses the button.)


Enjoy.

Zack and his Switch

Hallelujah

Holy Moly. I feel like there should be some trumpets playing and a chorus of Hallelujah ringing out from our lounge.


Today Zack sat independently all on his own for a good couple of minutes.


I had him sat in between my legs, with him cross legged. He had his hand down steadying himself and then I just moved away thinking he'll just fall to the side. No. He stayed sat there. I tapped his hand (secret code to get him to lift his head up). Up came his head and still he sat. Eventually he tumbled over to the side but flippin heck that was amazing. 


That's it now we shall be practicing more sitting. So round of applause for the Pants on reaching this huge, milestone.


In fact today he has been in a brilliant mood and found me to be hilarious. God knows why I was so funny today or why he was in such a good mood. Who cares, today was a very good day indeed.

Please help a gorgeous little girl called Rania

A while ago Zack, Dan and I had the pleasure of meeting a lovely little girl called Rania and her very wonderful Aunt Jo at Spaced in Preston. Like Zack, Rania has cerebral palsy and epilepsy. 


We only met them for a short while but through the beauty of social networking and the Special Kids in the UK forum I have kept up-to-date with her many, many achievements. I am always amazed at how well she is doing, how she goes to a mainstream school, how despite her difficulties she achieves so much. 


I know that all children with disabilities are not the same. Some make astounding achievements in their development, some do not. But Rania gives me hope that perhaps one day Zack will be able to do the same. 


Rania was born in Algeria at the age of two she came over to the UK to stay with her Aunt and Uncle. Now aged five she has a stable family environment.  In her eyes, aunty and uncle are mummy and daddy and her cousin is her sister. 


The Home Office wants to deport Rania back to Algeria. If this happens she will not receive the correct medical care which could be fatal. 


Please take a moment to read the article in the Bolton Evening News link below as this explains her case in more detail.


Bolton Evening News



Her family are trying to stop the deportation from happening and if you want to help there are a few things you can do.


There is an online petition which takes a few seconds to complete and can be found here.


Stop the deportation of Rania


And a Facebook page which has further information and other supporters this can be found on the following link:


Rania Must Stay



I hope the next time I blog about Rania it will be with good news and perhaps even a second meeting at Spaced. 

Zack got annoyed again

T'was my birthday the other day. I turned 37. I am not happy about this. So I am cheering myself up by reminding myself that my showbiz age is only 28.


We, and by we I mean the Gould-Price family went for a day out to Ambleside in the Lake District (I know most of you know where that is but I am just establishing the geographical location for our global readers. Yes we have a global audience, big up yourselves international readers).


Plan was to get out of the house for 9am. Get to Ambleside, have a nice wonder round. Go to pub for lunch. Feed children. Have ice-cream. Go home.


This is what actually happened.


Got out of the house just after 10am. Dan then spent half an hour trying to post a letter in the local post office. Got 30 minutes into the journey and Zack was sick. Cleaned him up and calmed him down (he still hates his car seat). Finally got to the Lake District about 12 noon so decided to just head straight for the pub. 


Found a good spot in the corner out the way and actually got in at the right time before all the crowds. Fed Scarlett, she went back to sleep. We order some drinks and food and Zack behaves himself it was all very lovely and nice. 


Left pub went off to Ambleside. Then spent an hour in the car park changing and feeding two children. No suitable changing facilities anywhere. Then got big pram out of the car, got big pram covered over with huge raincover. Stepped into my water proof coat as the zip had broken and got stuck. Went for a pleasant stroll round the town. It was nice for us not so nice for others as I literally took up the whole of the pavement with out massive pram. 


Zack got annoyed again until we stopped outside a toy shop. I got him out and carried him in. Oh, like a different child then. He was looking round the shop smiling. Having a wonderful time. I showed him a wooden stick with an orange elephant head at the top of it. When you shook it the stick jingled. Zack reached out and grabbed it. This meant that the jingle stick was purchased. He never reaches out so that took some effort from him hence toy reward. ( I still think he is having me on and can really move his arm, he's just playing it all up a bit so he can get billions of toys).


We went back to the car and off home. Bloody hell I was knackered by the end of it all. But we had a good day and Scarlett got a thousand good girl points as she was really well behaved. Zack was just happy to be home as he didn't want to go out in the first place. Mind you he went to bed really early so Dan and I enjoyed a nice meal together in peace. Perhaps it was worth all the effort after all. 

Zack is clever

Thanks to Facebook I have come across a fabulous documentary, called Certain Proof which follows three parents of children with disabilities as they try to move their way through the education system. 


Here's a link to the trailer.


Certain Proof



I think a lot of people assume that because a child has severe disabilities and cannot speak then they must also be mentally impaired. 


Of all the barriers Zack will have to face this is the one that really and I mean really frustrates me. Like one of the ladies explains in the clip, people assume that her child just doesn't understand and she assumes people wonder why she bothers at all. 


Narrow minded? Or are people forgivably just assuming that without a voice, movement or acknowledgment of others then the disabled person has no intelligence? 


I have always been quite modest as to the capabilities of Zack perhaps even being guilty of having no faith in his ability only to find he proves me wrong (see the day he used a switch for the first time).  But I know for sure that Zack is clever. He understands a lot more than we give him credit for. He wants to do things but is held back by the inability to control movement in his arms. He wants to speak but is held back by the lack of control of breath in his throat. 


Zack is very aware of his environment, he knows what he likes, what he dislikes. He can be a stroppy bugger and he can be the most excitable, loveable little boy. And now we are coming towards a period in his life were other people outside of our household will question his mental capacity. I am talking about the education system. I need to find somewhere that is going to challenge him, that won't make assumptions and will always assume that he can rather than he can't.


So that documentary is almost like looking in a mirror and is perhaps common to a lot of parents of children with disabilities. I hope other people watch it and learn something, even if it is a slither of understanding that just because a person cannot talk, move or interact does not mean they are incapable of understanding. A fact that I was perhaps guilty of before Zack. And it goes to prove that he has probably taught me a lot more about life and acceptance than any other person could and all this without a single word from his lips. Clever he is, that boy of mine.

There was lots of singing

We went back to Legacy Rainbow House last week for some one to one therapy. 


Zack and I went for an assessment last year in the hope of joining their conductive education sessions. Unfortunately there were no places but his name was placed on a waiting list.


For the interim we were given an hours one on one session. Zack loved it. He got shown how to take his sock off, put it in his shoe and put his shoes on the floor. There was lots of singing and rolling and at one point he was sitting on his own crossed legged on the floor. 


Then he got tired which equals crying so we called it a day. Other good news was that there may be a space for him in one of the sessions. I am really pleased about this as I think that the conductive education will help to push him in areas that aren't covered by any of the other therapies we do.


Here's hoping that he will get a place soon so we can crack on.

He was given a certificate

We went back to Brainwave last week for Zack's re-assessment and update of his current programme. 


He was given a certificate to mark his big achievement in learning to roll from side to side. To which he did from left to right and right to left, even though I had already said he can only do it from one side. Cue Zack making me out to be a liar and rolling in the complete opposite direction. 


I was given a graph marking where he is age wise developmentally. He has improved in most areas but most notably in the area of socialisation. The therapists stated how very much more aware he was and how interactive he is, well, yes, he can be. When he wants to be sociable he's adorable. 


In the new programme we have included a lot more mid-line play. This is were we try and get Zack to get his hands in the middle of his body to play with a toy in an effort to break up the reflex patterns that have remained with him from birth. Ordinarily babies will break these patterns on their own but Zack hasn't, so it affects his posture and tone. 


We also have a new piece of equpiment, a large tube. This is for us to roll Zack over from a side sitting position and also to sit astride to encourage further sitting and mid-line play. 


He was brilliant all day long. Full of smiles, didn't cry once and tried at everything. I was so proud of him. Scazzzahhh came along too. She ate a lot (nothing new there) and slept through the sessions. Probably thought we might stick her on a gym ball if she woke up. 

In my head it had already landed firmly poo side up

What do you do on a Bank Holiday when the sun is shining? Why go for a picnic, that's what.


Yep. Thought we would have a nice and I underline the word nice, family day out. This included an hour of preparation just to get out of the door. Two huge bags, one huge buggy, two car seats, two children and two adults. 


We got to the park in question, sun shining, both the Pants and Scazaaaah (pronounced with Manc accent) were in a reasonably good mood. 


"Look, why don't we have our picnic over there." Dan pointed at some nice grass interspaced with trees and other families/couples having lovely picnics. 


"Oh good idea." So we grab the bags, the children and plod over to a nicely selected piece of grass.


I lay down the blanket and start to get organised. What this really means is a lot  unpacking.


"There's rabbit shit everywhere." Dan points at little black poops scattered all over the grass, I wash over it, a minor flaw and we are sitting on a blanket that is just big enough for both are backsides. Scazaaaah starts crying. Zack starts crying. 


"There's midgies all over the place." He's right, there are hundreds of them. 


"Right that's it get up we are all moving over to that other tree." This took a further ten minutes. 


The midgies follow us to the new spot five minutes after that.


There we where, each sitting in front of a child to shade them from the sun. Dan was trying to feed Scarlett and I was tube feeding Zack. All the while trying to eat a sandwich and a few pork snacks (hey, they were Marks and Spencer pork snacks).  We glanced over at another couple. They were sat on portable chairs, drinking a glass of wine. Bucket BBQ all set up, food in tupperware. Reading the broadsheets. Oh yes, all very bloody civilised, and no children either. 


A gust of wind suddenly lifted up the recently departed nappy from Scarlett I just grabbed it in time before it disappeared. In my head it had already landed firmly poo side up in the face of the wine drinking, broadsheet reading woman opposite. How's that for your posh picnic. Bitter, me? No of course not. 


As we sat there, now freezing because the sun had moved and being wind swept due to the intermittent gale force wind. Dan turned to me and said, "Well this is pleasant isn't it?"


Picnic, pleasant? Not unless you're middle aged and have no children. Next Bank Holiday I will be decidedly not eating alfresco.