Monthly Archives: July 2015

That elusive emotional middle ground

I am struggling this week. And I am struggling to understand why I am struggling. But I have decided to stop thinking about that. I just haven’t got a cubic cm of struggle space left in my head.

This week I cannot cope. With the broken promises. With the endless list of things that have ordered but not arrived for Boo. With the things that have arrived broken or unusable. With the lies people tell you.

Come to think of the number of times I have had to confront every single one of these things this week alone, then maybe I can’t cope because it would be unreasonable to do.

Some weeks I get frustrated by everything but manage to shrug it off. This week I just can’t. I am more tired than I thought it was possible to feel. I feel in a stupour. I can’t remember the simplest things like whether I have eaten or been to the toilet in the past four hours. I know this isn’t normal. I feel semi-conscious. I am worried about myself. For my children if I get ill.

I feel like I’m breaking.

This week already, I have already had four meetings about Boo. Four. In three days. The first was with yet another of the nice, well-meaning people whom our local authority shuffles around (she has been in post for 8 weeks on maternity cover and is moving to another position again next week). Just as I was beginning to like her. She was appalled by some of things that have been said to me in the past week about Boo’s transfer to EHCP and possibilities for schooling. I kept my cool throughout the meeting, but was pointed and forceful. I worried I was being too forceful.

I felt the need to apologise (goodness knows why: I was polite, even toned, didn’t raise my voice). The words came out before I even realised what I was going to say: ‘You must dread meetings with me. I’m sorry. I have to stay angry in situations like this. If I didn’t, I would just break down and I made a decision a few months ago after a meeting in which it looked like I was going to lose Boo’s nursery place and my job and home that I wouldn’t allow myself to be that person in front of professionals any more’.

She looked so sad. She told me I was not alone. That she cared. That she could see we were being treated shabbily. I’m sure she does feel and think those things. But it won’t help us. She will be gone next week. Moved to another job within the service.

My words hit me hard and took me by surprise. I hadn’t realised how hard I had been trying to keep it together for the past few months. No wonder I am struggling so much at the moment.

I hadn’t realised either just how much I want to find an emotional middle ground I have long-since lost. The ground between frustration (not with Boo, not with cerebral palsy but with the systems and services that dictate his quality of life much more than CP does) and utter sadness. There has to be a place between anger and tears. I need to find it badly. I just don’t know where to look right now.

An update from Booland

Well, best laid plans and all that. Just as I felt the stars were aligning and I might get back to the blogphoto and the little piece of sanity it offers me, Boo got struck down by an awful bout of chicken pox. Thank goodness it’s now behind us.

And thank goodness he got it when he did. When his big sister had the pox a few years back she got off relatively lightly. I knew we had been unbelievably lucky; friends of ours have an otherwise totally healthy daughter who ended up hospitalised with it and was in a dreadful state. But honestly, I never knew how awful it could be until Boo was put on a massive dose of steroids to stop his infantile spasms. We were told that if he so much as came into contact with anyone who had the virus for the months he was taking the medication or for the three months afterwards it took to get it out of his system, he would need to be hospitalised as it would likely kill him.

Unsurprisingly, since then I have seen chicken pox differently. I remain mystified that the vaccine is not readily available in the UK. I know it is not 100 per cent effective, but the results in countries like the US where it is available show the benefits to all children, but especially for vulnerable children like Boo and adults with health complications. Thank God he waited until now to get it. That he waited until a time when he just (just! – how our lives have changed in three years) had to worry about cerebral palsy rather than epilepsy and steroid suppressed immunity. Another thing we can be grateful for.

There are lots of those, actually, and I’m mindful that there have been few updates on Boo’s progress in my semi self-imposed blogging hiatus, so I thought I’d post a few heavily edited highlights today so you know what’s going on in Booland.

Mobility

OK, I’m going to start here because this is the weakest link in Boo’s development. It always will be, although it breaks my heart a little less to write that now than it once did. I would like to tell you Boo can sit independently. That he could roll or crawl, stand and walk.

He can’t.

I don’t know if he ever will do any of these things. But we continue to work on every single one of them and he is making incremental progress in all areas. Small improvements emerge over time. Sometimes they are so small we can’t see them and it takes someone who hasn’t seen Boo for months to say, look how well he’s doing. We love these people! These people who can see what is right in front of our noses, but like the blooming flower, its process has become almost imperceptible to us who admire it every day.

The downside of the incremental progress is that there is no part of Boo’s physio programme we can drop, but the upside means we haven’t given up on anything (although sometimes my back does). Boo is sitting better, propping more reliably. He stands taller and will step enthusiastically (in fact it is ALL he wants to do) with support under his armpits. He sees no boundaries. Neither should we.

Aided Mobility

Because our therapy programmes were so long they were driving me demented, we have been forced to prioritise and on the physio side of things, this is an area that we are really focussing on in preparation for Boo starting school in 2016. He has had a walker for over a year. He can’t use it. He gets horribly frustrated in it and the way his body twists and turns in rage is frankly heartbreaking. I’ve gone through four pairs of jeans going up and down my kitchen with him on my knees trying to help him, but it was too much all round. We gave up using it for a while. Turns out we may just not have found the right walker. We recently tried another and, oh my goodness I just want to squeal … Fingers crossed, will be getting one soon. This will change all our lives and we cannot wait. More to come…

wizzybug-08-studio-pictures-001-806x1024Then there’s Wizzybug – of Boo’s Ug-Ug as he calls it. Up till now we have only been able to use the Wizzybug in the confines of our therapy suite dining room and kitchen as we have steps up to our front door and getting it outdoors was too difficult given my decrepit back. But now we have finally had our front adaptations done (a right saga) and one of the many terrific outcomes is being able to get Wizzybug to see the light of day. Boo is still fond of circling and the finer points of joystick control are a work in progress, although he can go in a straight line for much longer now. We are completely and utterly determined to get him to the point where he can use and electric chair safely and reliably one day. He’s enjoying it so much and we are so confident we will get there that we now have a bigger battery for the Ug-Ug  thanks to the lovely, lovely people at Designability so we can go further and further. Watch this space…

Speech

I think this is the area that Boo is coming on in most, although his speech is still very delayed, indistinct to other people (although rarely to us now) and he finds it hard to put more than 3 or 4 words together unless they are in the form of the Mr Tumble theme song, which he can sing right through. (Justin Fletcher, we LOVE you!) The move to preschool and being with big kids has helped dramatically, as has his good old-fashioned determination. He wants to be heard and we just keep listening until we get it. We are also pushing for trials of communication devices. Boo will never be able to write due to his poor hand function, but we live in hopes that an AAC touch-screen device will be within his literal and metaphorical grasp one day. We’re working on an iPad at the moment using Gridplayer as we await something through the speech and language service, but he tends to drag his fingers rather than point and let go and the symbols are a little small. We’ll get there though. We’re determined that he will be able to tell us all the things we know are going on in that crazy little head of his.

OT

Again, there have been some brilliant small gains here, too, thanks in large part to Pirate Pete. After 12 months – this is no joke, because I have completely lost my sense of humour about this – we finally have a potty chair Boo can use and we are starting potty training. Again, the pox has got in the way but we so want to help Boo achieve this for himself if at all possible. At the moment he uses the potty successfully most mornings. The rest of the day is more of a challenge – i.e. a complete flop – but if he can do it once we know he can do it twice, three times and more a day. This is how every piece of the Boo puzzle works. One step at a time. And then one day he’s striding ahead and we’re all breathless watching him.

So, that will do for now, I think. There’s more to tell, but if I don’t tell you now then I have to blog again. And I really need to blog again, so I’ll stop. Thanks for all your lovely comments and messages about me returning to blogging. I really appreciate it.

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