(Say this in a Geordie accent). Day 5, Linzi is hitting Zack on the head with a tambourine. Zack is enjoying being tapped on the head with a tambourine. Linzi has full blown cabin fever and did not realise that today was Friday and tomorrow the weekend. Outside is still frozen.
My venture (you can stop reading in a Geordie accent now) into the outside world has meant a meandering stroll down the street. Well, not so much a stroll, more of a sliding my Ugg boots down the lane as though ice skating. Zack knows when he gets taken out for his walk, he sits quietly in his pram, contemplating the numerous ways he can exact some punishment on me in ten years time for making him wear a pumpkin outfit, elf outfit and blow drying his hair into a quiff. I know when it's time to turn back by the colour of Zack's nose tip, a pale shade of pink usually means it's time to return home. Although I am hating the snow and frozen road, it is beautiful here. Everything is so quiet and peaceful, only disturbed as you gaze out of the back window at the cat eating a captured bird in two bites. (This consumption was also followed by a large rat being left by the garage door).
So what's a girl to do when housebound......phone up and harrass people of course. Yes. I have been chasing the Speech Therapist. Does three phone calls in a week equal stalking? I still haven't found out when Zack's next appointment is, in fact, either no-one at the hospital has seen the woman or she is avoiding me. One hopes it is not the latter.
I also telephoned Social Services about getting Direct Payments. These I think can be used to gain support and help when caring for someone with a disability. Bingo. I was in luck, a lovely girl phoned me today. I think my over-eager telephone manner gave away my mental state of being house-bound. She apologised for not being able to come round due to the snow etc. Apologise, don't apologise you called me, why we are practically best friends. We had a nice chat about the weather and how we both agreed it was better for it all to thaw out before she came for a visit, I mean I am more concerned about her safety than sorting Zack and I out. I told her all about how I used to work at St Helens College (she lived in St Helens), my whole life story in fact. Just kidding, I'll save that for when she visits, mwahahaha! She suggested that perhaps we can get me a Personal Assistant. Long Pause. A Personal excuse me....thoughts ran through my head of some young girl running round getting me faxes, picking up dry cleaning and answering the phone. No that can't be right, this isn't The Devil Wears Prada. She continued "you know someone to help you with Zack."
"Ohhhhhh, well I'm okay with him I could do with some help around the house you see."
" Oh, right, yes that's fine. What I'll do I'll bring all the information with me when I come and visit, after it's all thawed out."
"Okay, after it's all thawed out."
So I expect to see her in June.
I brought all of Zack's toys downstairs today. We had it all drums, maracas, tambourine, books, wrist toys the whole shahbang. As a special Christmas present I had made Zack a Sensory Book so he could touch and feel lots of different textures. When Dan come in tonight we were just putting things away when he picked up the book.
"Aaaaaah, look you've even written a little story for each picture"
I had. I was very creative.
"Aaaaah Honeycomb....but no busy bee. Fly to the moon space boy. Oh, no. Dinosaurs in your book."
He continued flicking.
"A patch of leather. Christmas tinsel. A shiny disk." He looked at me and his face said it all.
I realised that I had become less creative as it got nearer to Christmas. And to be honest, after wrapping up 45 presents it's hard to think of some witty story to go with a patch of leather.
Right back to the telephone book.......ooooh cold weather payments, not seen them yet, who do I speak to about that.
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.
Friday, 8 January 2010
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