This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Sunday, 26 February 2017
Used to run
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Half term, what to do, what to do?
Well, it's done now, suggestions aren't needed. Filling endless days of school holidays is very easy for the smaller child but for Zack and his requirements it can be quite difficult.
We are limited on places to go that we haven't already done to death and limited by what's on offer within our local area.
Once upon a time Warrington Council created a brand new, all singing, all dancing facility especially for children with disabilities, The Warrington Play and Sensory Centre.
In fact so delighted where we with a place to go with Zack that we even did a small testimonial for them.
Oh, and they used to run a lovely group called Dolphins in the holidays that myself and some other mummies and daddies of kids with complex needs would go along to. But re-read that sentence and what stands out? The words 'used to run'.
Because sadly that service got cut and the reason, funding, or lack of it. I had not been back to the sensory centre for a while and this weekend we visited as a family.
I couldn't believe how run down it looked. In the lovely little dark room they used to have projectors for the large film screen and one for the floor. Not there. Broken.
In the sensory light room, they used to have a switch box to activate the bubble lamp. Not there, broken.
To be honest, I would have had a better time taking him to a normal play centre. I asked an assistant why the box wasn't available, she explained it was broken and they had no money to fix it as their funds had been cut by the council.
I paid £7.50 to take two children in for an hour, I understand money is limited but if I am paying to use a place then I expect equipment to be working.
Secondly, I know councils are having budgets slashed and we see flyers to save libraries and other valuable services. But why is it that those in our society, the most vulnerable and the most at need have their programmes cut first?
My son with all his complex needs like his other pals have no access to leisure or social activities.
No, no, wait.
There is a council bought in service called Playability that is for children with disabilities.
Great, we can go there.
No, actually you can't.
You see my son is PEG fed and he isn't allowed to take a one to one support worker in with him. But someone can come in and feed him, then leave him again without a one to one personal assistant, which he needs in order to access the world. This equals, no access to playability.
He no longer can meet his pals at the Dolphin sessions.
And now we will no longer be going to Warrington Play and Sensory Centre because despite us paying to get in it has equipment that is broken which will remain out of order until someone pays to get it fixed.
Warrington Council need to get a handle of a facility that has the potential to be really, really good. Instead they are choosing to let slip a valuable service to families and children with special needs.
What do I want to see? More opportunity for all children with disabilities, places to go for all and services that can accommodate even those with the most complex needs.
Guess I'm dreaming.
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