Tuesday, 31 August 2010

Well the 'craft project' has had mixed results (see previous post where I stuck photos of Seth's daily activities to card). I rarely used it to explain Seth his day; I discovered that I had put them too low down on the wall. Whilst prone he can't comfortably see any of them and when he's standing they are too low. However, I have discovered quite how much Seth uses his feet at night; he has enjoyed rubbing his feet against the different textures I had stuck to the letters and has rubbed all of these and all the glitter off. So, I have moved the ones that are still intact higher up the wall and will recreate the others. & now I want to make something specifically for his feet to play with! I was thinking of putting a large touch pad on the wall with which he could turn his light on, but I don't even know how to start with that. The idea came to me when Seth was playing in a sensory room with pads that played music when touched. So if anyone has any knowledge about this please let me know.

Sunday, 22 August 2010

How do you know when a protest is a genuine cry of frustration or an almost 3 year old acting up? & is Seth not doing something because he truly lacks the ability or is he trying it on? Seth has these temper tantrums which I actually love because they are just so, well, normal and they show his personality coming through. But knowing that he is strong willed makes me question how often he doesn't do something because he simply doesn't want to, and not because he can't. It's actually a great dilemma to have although it drives me crazy.

Tuesday, 3 August 2010

Cerebal palsey. I still have real difficulty with this term. Some time ago I noticed it on a note passed between consultants and as no-one had mentioned it to me I confronted them about it. At the time they were vague and said it would be something that might be diagnosed in Seth's future. At Seth's assessment a few months ago I asked if it was something they felt he had at I was told no. However, today a mum whose son has very similar physical difficulties to Seth told me that he had been diagnosed with cerebal palsey. So now I'm pretty confused. I don't want Seth to have cerebal palsey because it conjures up images of children and adults sitting awkwardly in supported wheelchairs. & yet what little I know of it, it does seem to fit with the fact that Seth has low muscle tone and struggles to use his arms and hands to hold things and support himself. So why are the 'professionals' reluctant to use the term? Hey, at the end of the day it's just a label and doesn't really make much difference but it's yet another example of the contradictory information that we are given even within the same County Council, depending on which 'professional' is assigned to you!

Anyway, today a small group of us attended a disabled children's session at Rugrats and Half Pints in Banbury, an indoor activity centre. I recommend it for all kids.

Sunday, 1 August 2010

I was annoyed at myself. Yesterday I was seriously pissed off, short tempered and impatient with Seth. I was hyper aware of him and that made it worse. When I started the post this morning I was intending to convey the bad place I was in. The whole point of this blog was that it was intended to be a place I could let it all out, let off steam and get the crap off my chest without burdening Craig or friends. & yet I was surprised how positive it's all been and even this this morning's post ended on an upbeat note. Is it because I know people are reading it and that curtails my honesty? But I've deliberately shared my posts because I wanted something positive to come out of it - I wanted to be able to share my experiences, what I learn in the hope that it might help someone else going through what we've been through/are going through.

Yet reading back through this morning's post it feels honest. & Seth has to only do the smallest thing and it lifts me completely. It helps that I have had limited contact with the hospital - that usually sends me spiralling down. The fact that I keep cancelling appointments might have something to do with it! If there's one thing I would share it's to take control of those appointments early - don't go just cos they make them for you; find out exactly what the purpose is and what you all will get out of it. I actually had a Speech & Language appointment - I took time off work, took Seth out of nursery and when I got there when I asked the therapist what the purpose of the appointment she actually said she didn't know but that we could spend the time having a chat. I never saw her again. I've never met anyone who finds her useful so how is she still working there?!

Anyway, enough of the rant. I have reassured myself that I am still being honest with these posts, even if they are more positive than I expected.

I'm not blind. I know that it's possible that we will be still feeding Seth his meals when he's 40, or still changing his nappy. But that way is the way to madness. Not that the thought doesn't strike me sometimes. When Seth is showing new awareness or skill then it's easy, but when that development pauses as it inevitably does, that's when the fear creeps in. I hate that as soon he gets in his chair he rocks back and forth. It's not enough that he shrieks with delight because I want him to be delighted by the toy on the tray in front of him. But then as I'm typing this Seth has stopped bouncing and is talking and reaching out to touch the toy. He's looking at it and in an instant my fears move back to the shadows. He IS aware of things around him and he IS trying to interact with them. Moving his own body is simply still much easier. But...if in the end Seth doesn't move on 'cognitively' as I'm warned over and over again by the 'professionals' I hope I can find peace with that. Right now though I'm back in a fighting mood.