Zack has a standing frame. I have been pestering our physio for one for a while as it seemed like Zack was enjoying pushing himself up on his legs more and more.
Finally one arrived from a magical place called Stores. I am delighted to say it came in a charming bright yellow colour and clashes beautifully with his wonderful orange sunbeam chair. Why can't manufacturers make special needs equipment in tasteful fabrics do they think everyone's house is painted bright orange (apologies if your house is painted bright orange, but seriously, you should know better.)
Yes, it arrived, it was a bit grubby so I cleaned it up. I went out for a bit. I came back and Dan told me the physio had called to say it should have been delivered to the Child Development Centre and not our house as she wanted to try Zack in it first. She told us not to try him in it and hang on until Monday for our appointment. Okay I thought, I'll wait but it isn't leaving the house. Ever.
Monday came and with it the Physio. We tried Zack in the frame and there he stood, arms out front, head up, looking at his toys. The physio was both impressed and surprised. We tried him on three seperate occasions in the frame and he really liked it. The physio thought he wasn't going to take to it and might get a bit stressed about it all but no he was one happy little boy. Zack got lots of well done comments and clever boy statements, I was very proud. I also knew he would like it. Plus I had a word with him the night before and told him to not let me down, this is a team effort and he needs to put in a bit of work otherwise we aren't going to get to keep our magic yellow standing frame. The pep talk worked.
Will post some pictures of him in it soon. I agreed with the physio that I would just try him in it for five minutes a day so that he can build up his tolerance. The frame will help him to bear weight through his legs, hold his head up and strengthen his back and chest.
Parents Views
Warrington Council have set up a Parent and Carers forum as part of Aiming High for Children with Disabilities. I went along to one of the forums last night and was astounded at the lack of representation of parents with children who have multiple disabilities. All the parents that came along had children who were autistic or have aspergers and it seems that Warrington is very heavy in this area of disability. Another area I noted was that much of what had taken place so far in discussion or previous forums has centred around children from five upwards, there did not seem to be a lot going on for early years. I have put myself forward to become a parent representative. If the local council have been given a large sum of funding for this area then I want to ensure that at the very least I can be a voice for my child and other parents who have children with profound disabilities and complex needs.
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.
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