Topsy turvy

The last three years has seen a lot of blue skies thinking and turning things on their heads to try and work out the best way to tackle a situation. James' regression and diagnosis really turned my life upside down and there isn't a day goes by when I don't have to think outside the box.

When Bea was born I was still blissfully unaware of James' problems. We put her in cloth nappies at birth - much to the midwives' amazement, many of whom had never seen a cloth nappy! I found the washing just about manageable, and bolstered myself with the thought that we would toilet train James over the summer, so it was only a temporary thing. Little did I know that nearly 3 years later I would still be changing two sets of nappies. We continued using cloth at home with James until was 4 and a half, when I finally got hold of the continence advice service and we were given free nappies from the council. I thought I would finally get one child toilet trained last August, when Bea announced that she wanted to wear knickers and hated cloth nappies, but sadly this has not been the case. We had a good go, but with the upheaval of James not being in any form of placement in September, and then starting nursery and with our childminder, it wasn't really good timing. And every time we've tried again since, she has shown little interest in actually communicating her need to go to the toilet (apart from when sitting in the trolley in the supermarket, when she will even now insist at the top of her voice that "I need to go to the toilet" even when she's wearing a nappy!). I am sure that if I didn't have James' extra needs to juggle, I would have been able to knuckle down and tackle this. But my life is too complex, there are too many conflicting needs, and I can't do it without compromising something else. So once again, I feel I'm damned if I do, damned if I don't.

Siblings of children with special needs do get a different life experience - I'm not sure that they ever wish their life could be different, but I'm sure that at some point we'll have to deal with Bea's awareness tha James' difficulties mean sacrifices and different expectations for all of us. For instance, I cannot imagine us visiting friends overnight for a party, nor going on a joint holiday with another family. Once Bea starts school, it is going to be difficult for her to attend any after school activities unless James is in some sort of respite facility as I will need to be home when he is dropped off and we would struggle to walk to school and back with him. I have taken James to swimming lessons since he was 4 months, and we still go weekly - Bea has been swimming about 4 times in her life. Most of my friends with children with similar gaps are able to take them both to their lessons - I'm going to have to wait until Bea is competent at dressing and undressing herself as James still needs complete supervision to change. Sometimes when we're walking a short distance I find myself holding James' hand (tightly) and asking Bea to hold his other hand - it looks very sweet, this "older sibling leading younger sibling" tableau, but first appearances can be deceiving.....

Maybe there should be a book for siblings with special needs, one they are instructed on in utero. It would read something like this:

1. Don't give your parents cause for concern, ever, especially not by displaying similar signs to your affected sibling (the more I look at Bea, the more obvious her "autistic" traits are - not that I think she is autistic, far from it, but more than some typically autistic features in James are a strong and positive presence in Bea's character and personality, for instance her strong will, her persistence, her enjoyment of thrills such as spinning around and swinging high)
2. Toilet train as soon as possible, preferably without any involvement from your parents
3. Develop a sense of danger (and safety) early on in your life - or at least, don't end up dragged to A&E for x rays and plaster casts three times in the space fo 6 months at the age of 2.....
4. Be a listener - as a child, this means listening to your parents and (preferably!) doing as you're told. As an adult you may have to listen to your parents concerns about the future....
5. Don't ever say "it's not fair" because I'm afraid life's not fair. And you're going to learn that sooner than most.
6. Love your sibling unconditionally and show them your love, because that is going to light a light in your parents' hearts and show them that it is all worthwhile

I'm sure there would be a lot more in the book, but it's a start!

So this week has been a bit more topsy turvy than most - half term is quite a struggle for James as he loses all his routine of school. He has adapted reasonably to the complete upheaval of starting school quite well, apart from missing at least a quarter of the second half of last term! When he gets picked up at 745, my heart is no longer heavy and in turmoil - I know that he is in the best possible hands and that he is finally making progress, something we hadn't seen for so long that we'd almost given up hope. But holidays fill me with dread, worry and nervous anticipation. Thank goodness that there is a playscheme at Kids Can Achieve, and James goes there every day it's open! I've used the time he's there as an opportunity to take Bea places I can't go with James in tow - today we went to the garden centre and a lovely cafe and yesterday it was shopping...

On a totally bizarre last note, I found one of my telephones in the kitchen sink this afternoon. I have no idea how it got there, who put it there (I suspect James, but can prove nothing....) and whether it got damaged, but it just shows how chaotic and topsy turvy my life is at times.....