We have a new plan in place where Ava-Jane goes away for a night once every two weeks. Earlier in the year, social services had noticed that we were struggling a bit so suggested that we needed a bit of respite… So, that’s respite from Ava-Jane… from Ava-Jane! I have to admit that I find that hard to take. I imagine that a lot of parents reading this will be thinking “I wish I could have some respite from my children!” But in the case of Ava-Jane, I can’t help a little part of me feeling that I have failed.
How could we possibly need respite from the squidge?
[some time later]
So this blog post was going to be about what a marvellous child AJ is and how could we possibly not be able to cope with such an angel… but that was then, about an hour ago when I started making notes for this post. This is now, after supper and putting her to bed. And what a massive pain in the arse the little angel has been! We got a take-away curry and the only thing she would eat were the poppadoms. With AJ it’s not a case of her trying something and deciding she does not like it. If she has decided that she doesn’t want something, she’ll push it away, chuck it on the floor or, if you get it past her lips, spit it out. But she was fine for chocolate ice cream, oh yes. AJ gets a bit of a pass on the regulation from Pink Floyd’s the Wall “How can you have any pudding if you don’t eat your meat?” (ooh, the Wall, I will put that on now – that’s not a Shuffle Play album. Overblown concept albums really suffer in the days of Spotify and playlists). Also chocolate ice cream is the ideal vehicle for making sure that AJ has her meds. That and straight sugar! Otto is appearing in Mary Poppins, so we have sessions of singing “A spoonful of sugar helps the medicine go down” as we administer AJ’s various pills, capsules and liquids.
Then she started kicking up a massive fuss about something. For AJ it is very difficult to express what any given problem might be. She could be yelling because that last big spasm really knocked her out or it could be that she needs a massive poo. But we got there in the end and we got the “Bed, book, milk, Dada” ritual. I am doing a lot more of this as this is the longest stretch we have had without live-in support of some kind or another for years. The excellent Jess come for a few hours a day a couple of days a week but otherwise we are fending for ourselves. It’s lovely but we really aren’t getting out much!
So I suppose people will have been reading the above, thinking “Of course you bloody need a bit respite, take all you can get.” Which is, of course, true. And it’s not just us that needs it, AJ needs time away from us. She is nine years old and outside the school environment, she does not spend any time with children her age. She goes to a great place in Aylesbury that’s run by a lovely charity and is able to spend a bit of time with other kids. Quite what they get up to, I don’t know but AJ seems to report back happily.
And AJ is growing up whether I like it or not. We still have the after-bath cuddle where I sit her on my knee and wrap her up in the towel and cover every inch of her so only her nose is sticking out. She is very particular that every bit, every last toe is properly covered. But that’s kind of not what you do with a ten-year old, not least because it’s getting increasingly difficult, even with the biggest towel, to completely cover her – she is growing quite lanky. But she likes it and I certainly like it. That’s one of the advantages we have, we’ll be getting “those” cuddles for a lot longer than most parents.
So the respite is all part of the difficult process of watching AJ grow up and watching her needs evolve from what were essentially the needs of any infant to her becoming an adolescent with disabilities, which need to be managed within the wider society and not just in the comfort of our own home.
We also had AJ’s parents’ evening this week. I thought it was going to be one of the big ones where we meet with a panel of teachers, medics and therapists but this was just with Caroline, her teacher and Jo, one of the heads. And it was more like a “normal” parents’ evening, where we were discussing AJ’s schooling properly. Caroline is a very, very special person of great wisdom whose respect for the children with severe learning difficulties that she teachers is wonderful. She palpably adores AJ but takes absolutely no nonsense from her and has completely got her measure.
She thinks that AJ’s range of vocabulary has expanded enormously recently but verbal communication is still based round two-word utterances. She is good at French (!!), interested in having a go at maths (counting, sorting) and sees no point in reading whatsoever. Apparently she has got issues focussing on the task at hand – the trouble with AJ is that it is hard to put your finger on why that might be. Is it the Down’s Syndrome? Is it the brain damage? Or more likely, is it because she is a Baxter? I have been tapping away at this while Otto “does” his homework – a painful process for all involved! I have been trying to find some time to do some educational stuff with AJ and we tried to have a push at reading at half term and I can confirm that getting her to stop mucking around and concentrate on what she is supposed to be doing is massively frustrating. And in the absence of my mother, I suppose I had better be the one to say “and just like their father too.”
So we’ll try to make the most of the respite and take it for the benefit it is. It should give Fo and I an evening that we can do something together or something with Otto.
I wanted to share this poem written by Henny Beaumont, someone I met on Facebook. She wrote a very powerful graphic memoir of bringing up a daughter with DS who had similar heart issues to AJ. Hole in the Heart – Bringing up Beth Amazon link
This poem is about filling in a personal independence plan and ascribing numbers to describe a person’s abilities.
The line “I am angrily grateful for the help I receive” seemed to sum up very well how I feel about the respite support we are receiving.