Monday, 23 June 2008

An Apology

It seems I have upset nursery. I'd like to apologise for that, and have edited the negative comment.

To redress the balance (although, having read through this blog, I can find precisely one negative comment and a large number of positive ones), I should like to say how much I appreciate the good things nursery do for both girls.

Mog has been in nursery for four years now, and will be leaving at the end of term. During those four years she has been loved, cared for, stimulated and educated. She has had staff around her who have learnt to read her, who know when she is tired and when she is ill, who can tell when she is having seizures and which ones need treating, who know the kind of stories she likes to listen to and the music she likes to sing along to. She has had a safe space to get used to not being constantly by my side, she has had plenty of cuddles but has also learned how to sit without being cuddled. Mog has been appreciated for who she is, she has been surrounded by people finding ways to help her - not to fix her, but to enable her to do the very best she can with whatever she has.

Little Fish has had just one year at nursery, and it has been a very different experience. Not different in a negative sense, different in that Little Fish presents very different challenges. Mog needs time, patience, gentleness and persistence. Little Fish needs firmness and jollility in equal measures. That is inevitably an oversimplification; nursery have adapted to meet the needs of both children, and have grown from a group of three when Mog first started to a group of around twelve now.

In the past four years I have seen the layout of the class change to better reflect the changing needs of the pupils. Links have been forged with a local mainstream nursery, as well as what appears to be a greater involvement in whole school activities. The staff at the nursery have been flexible and helped me out, keeping hold of Mog for extra time at the end of a session at times, offering help and support out of school time during family emergencies. They have explored new ways of overcoming Mog's spasm, done training to find ways to help Mog communicate, found quiet spaces for Mog to rest when unwell whilst at the same time finding ways of keeping Little Fish and other more active pupils busy and stimulated. Time and training have been offered to Little Fish's mainstream placement, staff from nursery attend meetings called by social services and the hospital as well as education.

It isn't perfect. But then, it isn't going to be perfect. Perfect would be finding a way of giving Mog her own voice. Not just 2 messages or 4 messages but somehow bypassing her broken body and connecting her mind to the outside world. Perfect would be a way of having someone to chase Little Fish around and keep her and others safe from harm whilst at the same time giving her the freedom to explore her world at all times, but somehow managing that without having someone glued to her side every minute of the day. Perfect would be making my girls the top priority, every minute of the school day. These are all totally unrealistic expectations, born from my own guilt and sense of failure as a parent.

I want to be able to give Mog a voice. I want to be able to dedicate myself to her, every minute of the day, to watch every nuance of emotion as it passes over her face, to translate all her thoughts into words which can be shared with the wider world. It isn't ever going to happen. She wouldn't be able to cope with that level of stimulation even if I, or someone else, could provide it.

I want to be able to give Little Fish the freedom other children her age enjoy. I want her to be running free - ok so her legs don't work, but I want her to be able to run with her wheels. I want her to be able to do simple things like drink a glass of water without risking drowning, I want her to be able to play in a sandpit without eating the sand, I want her to be able to keep her head above the water when swimming with her mainstream peers. But a wheelchair isn't a pair of legs, and the damage her tank can do doesn't compare to the damage a misplaced foot can cause. And whether it's delay or learning disability or whatever, she is behind her peers; not only is she never going to be top of the class, she might actually not cope towards the bottom of it either. I want someone to take hold of her and make her learn the difference between different colours, the way to draw a face, the way to eat with a fork. And it isn't something I can force. Even if she were at home with me all day, and even if I had nothing else to do all day but be with her, she will do these things at her own pace. Or she won't.

I want to be able to justify my decision to allow my girls to go to school by looking at the spectacular progress they make there, by showing that the things they do there are things they couldn't do at home, by stepping back in admiration at the wonderfulness of the things they acheive every day.

And the fact is, none of that is going to happen. It's totally unrealistic, completely impossible. What they get at school is far better than what they'd get at home - if only because if they were both at home with me all day I'd be far too tired to do anything with them at all. But that's not all - the staff at the school are trained and experienced and do do a great job. They see and celebrate all the little inchstones just as I do. And they are able to step back and see the bigger picture too, something I can't do. We do disagree about the best way to do things at times - sometimes because I am unrealistically expecting my girls to be first and only, as opposed to two of twelve, sometimes because I am unrealistically expecting my girls to be less disabled than they actually are, and sometimes because we have a different understanding of priorities.

Sometimes of course, when we disagree, I am right! But those times when I truly believe I am right, if after discussing things with nursery (and communication is another strength of theirs) I cannot get my point across, then I have two choices. Take the girls out, or let nursery do things they way they want to do things, the way they need to do things. If I choose not to take the girls out then I suspect I forfeit my right to complain too.

It isn't always an easy balance. I've worked in schools before, I've seen the other side. I've been the carer having to deal with the nightmare parent. I have resolved not to morph into that parent from hell, but I can feel that coming through under the surface at times. Not because the school isn't doing a good job necessarily, but because I want things to be different, better, for the girls. I want to change the world in their favour, take out the unfairness, make all things possible. I want it to be true that the only thing handicapping a wheelchair user is a flight of stairs, the only thing handicapping a non-talker is a flat battery on a communications aid. And that isn't true, isn't possible.

The girls are my girls and I love them. I love them for themselves, I love them the way they are. And the nursery staff do too - I know this. I want things to be different, better, for the girls - I don't want to change the girls, I want to change things for the girls. It can't be done - but that doesn't stop me from getting frustrated by the fact that it isn't being done. I'm sorry R et al; you got caught in the crossfire between me and the universe.



Elinor said...

Well put!

Tina said...

Sending a hug.

Hazel said...

But the fact does remain that unplugging a child's electric wheelchair is still no more acceptable than putting a non-disabled child in handcuffs to teach them not to pull hair or whatever. Looking forward to seeing you, and Meg sends love too.

Doorless said...

I couldn't have said it better. I think all parents of diferently abled children deal with this struggle. It is one I know very well and am dealing with now with CA social services. They didn't realize the extent of Mikayla's disability and that she wouldn't be able to play with Ashley in the way a more abled sibling would.
Your struggle is one of the reasons Alicia left High School before she was 21. They wouldn't even let her leave her coat on when she came off the bus. Never even asked her if she wanted it off then told me she cries everyday when she gets in the class. I went and observed. She said Yeah! and then asked Alicia if it was because they wanted to take her coat off right away. There was more. You are not alone.


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