Friday, 27 June 2008

New beginnings

There seem to be so many things happening around me at the moment that I hardly have time to sit back and appreciate them. The last year has been frantic and very challenging but I finally feel there is light at the end of the tunnel.

The new garden is proving to be a haven - James has always loved being outside and a large garden was one of our essential criteria when we moved. Sadly, the previous owners had neglected the garden so whilst we had the space we also had the bindweed, brambles and building material (6 skips worth!) to contend with. Bea learnt to walk on the old lawn, full of dandelions and horribly uneven. James spent most of last summer with his legs covered in scratches from the brambles and unruly roses. So now that it is a safe, relaxing environment I've finally discovered the joys of gardening. Our last flat had a raised level garden the size of a postage stamp and wasn't particularly fun to be in. I did have a short spell of green fingered dabblings the second summer after we moved in (we got married the first summer) and grew quite a lot of seedlings, but the following summer I was pregnant and haven't had a moment since! I am woefully ignorant when it comes to gardening so when our designer said he was leaving us a plot to use with the children I decided it was about time I learnt a bit more. In my usual manner, that has entailed a bit of shopping - although I don't think 2 books and 10 packets of seeds is that bad! I don't know if it's beginners luck or the fact that the soil was well prepared, but so far so good - I sown sweetcorn, peas, carrots, spring onions, radish and rocket in our bed and everything has germinated. The radish are attracting the slugs so I'm off to find some environmentally friendly (and child friendly!) methods to keep them at bay. Tonight we ate our first salad leaves from my troughs and I'll plant some more soon. My friend brought round some cucumber, courgettes, aubergine and chard yesterday but I'm not sure that they'll all survive outside (we don't have a greenhouse) but I'll give them a whirl too. Bea loves to help me and her sunflowers are doing well and she's getting the hang of dead heading - she's a little overenthusiastic at times though, and keeps offering me various leaves she's picked, telling me they're delicious.

With all this growth going on in the garden I've noticed that James is very happy to be outside on the trampoline or in the summer house with us. In fact, he's started requesting that I join him on the trampoline - I suppose it goes some way towards me getting a bit fitter! We've been using "Intensive Interaction" techniques with him for some time now, but recently he has been reacting more positively to it, as if he's suddenly clicked that we're joining him in his activities. He is showing a lot of affection and when my parents were here they commented on his greater level of intereaction and awareness. It has been a long time coming - it's over 2 years since we really noticed his regression and it seems that he is finally beginning to make a little bit of progress. I look to September, when he starts school, with a sense of trepidation and worry - I just hope he doesn't find the change too difficult and upsetting. He has struggled immensely over the last 9 months at nursery, mainly because it was the wrong environment for him, and I am hoping that the smaller class (there will be 5 other children with ASD in his class) and higher level of support will mean he can start building on these foundations.

Another big change in our life is that I am earnestly looking at going back to work - I've been away for over two years now and feel that if I don't give it a go now I'll never get another chance. In medicine there comes a point where you've got so out of touch that you have to virtually retrain and I don't want that to happen. So I've taken the bull by the horns and am planning to start one day a week in the middle of July. So a lot of our time has been spent trying to find suitable childcare for the children - special needs nannies and childminders are few and far between, but there are some out there. It's been quite daunting, inviting people into our house, interviewing them and having to talk about James' difficulties with virtual strangers, but it's one more step towards me getting this part of my life back on track.

Wednesday, 18 June 2008

Happy Birthday

It's official, I am now half way to 70! I had a lovely day but somehow it was tinged with sadness, as I remembered my last "big" birthday when I hit 30.

Rewind 5 years and I am 18ish weeks pregnant, feeling my baby kick me, enjoying the blooming and blossoming stage (the nausea and exhaustion was starting to tail off by then!). We were abroad as we had decided to take a 2 week holiday in a deserted part of Cephalonia - we knew our lives were going to change forever in a matter of weeks, but we had no idea how much. I was a realist, and knew that the early years would be hard but I never expected it to be this hard. I guess that in my line of work, you can't ignore the fact that not every pregnancy has a perfect outcome and that even if you have a healthy baby that's no guarantee that you won't encounter problems further down the line, but like most people had never imagined it would happen to me. It's one thing seeing and diagnosing children with autism and other developmental difficulties but quite another to discover that your own child has a life long disabilty. Perhaps it's because of my professional background that I've struggled so much over the last 2 years - I haven't been able to be "innocent" and "uninformed" as everyone has expected me to know the answers. Sadly, with autism there are no certainties and I still don't have the answers. They say that too much knowledge is a bad thing, and I couldn't agree more - perhaps because I have seen the worst case scenarios and the poor outcomes I've wallowed more than most parents. I've talked to parents of older children who have said they were glad that at the time of diagnosis they didn't know how hard the struggle might be - I don't have that, I have seen the struggles, inadequacies and failings of the systems and I have seen both the positive outcomes and the negatives. I feel overwhelmed, surrounded by this sea of knowledge, unable to filter the useful from the inappropriate.

Another reason I've found this year hard is that so many things are happening on a daily basis that make me realise that James was struggling for a few months before I "noticed". The parenthesis are there because I often wonder if I was subconsciously denying the problems, or whether I was so wrapped up in my pregnancy (which was not without its complications) and new baby that I ignored them. Almost every day Bea does something that I know James couldn't do at the same age (and still can't - but that's another discussion altogether). So when my husband sent her in to me with my birthday card and she gave it to me with a big grin on her face as she said "Happy Birthday Mummy" I wept tears. Tears of joy because she looked so earnest and it was so touching and tears of sadness because I remember trying to get James to wish his daddy a happy birthday a couple of weeks after he was two. I shrugged and thought it was a bit much to expect of him. Clearly it wasn't.

Wednesday, 11 June 2008

Mummy, I want....

How long have I waited to hear those words? So much about typical human developement can be understood with just that little sentence - the child has recognised the need to address the adult ("mummy") in order to share their desire, they have a sense of self as distinct from their carer ("I") and they understand that the carer doesn't know what they are thinking/feeling/wanting. Without the ability to share your needs and desires, caring for the child can become a guessing game, sometimes hitting the jackpot and other times ending up with a rather frustrating series of incorrect guesses that are rejected. James occasionally shouts out random words (in particular "want water") but we're never sure if he really means it (at the start of his regression, when Bea was a newborn his favourite phrase was "want a wee wee, want a poo poo" which was incredibly frustrating - countless times a day we'd find the potty, undress him, sit him on, find he wouldn't perform, redress him then he'd dirty his nappy 10 minutes later. I found it difficult to deal with to say the least....). We try to filter out what we do and don't respond to, which is especially hard when he finds communication so difficult. It is so tempting to respond to every attempt to communicate, but there are times when I just can't do what he's requesting, or don't actually understand what he wants/needs. As is typical of autistic people, James rarely directs his communication to anyone - it is more obvious now we are in this house rather than our old flat as he will be in the kitchen saying "water" when I am in the playroom.

So it's a bit of a kick in the teeth that the first time I heard "Mummy, I want...." it came out of the mouth of Bea, a day or so after her second birthday. I imagine this is the start of a slippery slope - gone are the days I can meander round the supermarket without the clammer of "Mummy, I want...."! So occasionally there are some benefits to James' difficulties - he has never pestered me for anything!