Does three phone calls in a week equal stalking?

(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.

He wasn't for building a snowman though.

It snowed. Zack and I have cabin fever. Well I have, Zack quite likes the warm as do the cats who have developed an inability to go outside in the snow. One in particular, Willis, does the best impression of an RSPCA advert that if I didn't bring him inside the neighbours would think he was suffering abuse. He sits outside in the snow holding one paw up and shivering, he had only been out for 30 seconds!

Zack and I marched up the garden when it was snowing. The Pants liked it, probably because the whiteness made everything so bright. He didn't mind the snowflakes falling on his face and did his best at keeping his head upright to take it all in. He wasn't for building a snowman though. No, back into the warmth to play with his new favourite toy, Mr Dog.

I showed Dan how much he liked his doggy toy and how he smiled at it when he made his barking noise. I overheard Dan asking Zack if he liked it and then saying this doesn't mean you are going to get a real dog you know. Dammit.......I thought I had sneakily found a way of getting a Puggle. Zack and I will have to work out a new plan.

School phoned up to tell us that they were closed because of the snow. This made me giggle, not because they were closed just because Zack's school had phoned up.....he's only 11 months old!! We shall go next week though.

We have started Zack on his Vigabatrin. So far so good. But it is only a small amount so we will have to wait and see what happens when we increase it next week. His seizures have not been very many about two to three a day and when he does have them they are quite subtle.

I can't believe that he will soon be one. When you take stock of what has happened to him you can see how very far behind he is compared to other children. When I think about this it makes me sad but then Dan reminds me of all the things he is doing, things we didn't think he would ever do. For example he without doubt knows both of us. Probably me more than Dan but then that's because I am lucky to spend more time with him. I think, but can't be sure, he is starting to understand his name. It may just be my voice but he will look at me when I call his name. We didn't ever think he would smile or laugh and he does. He shows pleasure in things and shows interest and enjoyment, it is subtle but you can tell the difference. He is sitting up on your knee and can sit there whilst you support his lower back. He doesn't cry at tummy time any more and sometimes manages to push himself up. So I suppose whilst these are small things they are good steps forward.

I am also starting to realise that whilst some areas of the NHS are good there are others that are not so good and you don't always get the help and support you need. Sometimes it is assumed that Zack is similar to other children and you end up getting grouped as one. This is no good. Not all children are the same and I wish that they would try and consider the individual rather than the masses. I could go on but I don't want to turn into a rant.