Saturday, 12 January 2013

This Is My Gap Year

I honestly don’t understand where the time came from to produce AuKids in the early days after my twins' diagnosis. 

It’s only now, when life has got so much easier, that I look back with slight amazement when I think that we started the magazine when they were five years old. I must have been in some sort of giddy haze of excitement at the thought of them starting primary school.  Those early years of coping at home with very little outside help (except for the marvellous Portage) were almost over. It had been tough. If only Tori's support agency Time had been around then...but she started it at the same time as AuKids.

So, harsh though it sounds, I couldn’t wait for my life to ‘begin’ again when they started school. There was always the question of supporting Bobby's mainstream school in helping them to understand autism, but for me it was nowhere near as difficult as being a 24/7 carer. I was lucky in that respect.

I think most parents of pre-school kids feel the same, but as with all things autism, the sense of relief was amplified by the fact that autistic pre-school twins are no walk in the park. In fact, walking in the park was the last thing I would have done without back-up. 

Incidentally, I found my back-up in the form of a fabulous volunteer - Carole, from the charity Homestart.  She’d pay me weekly visits, and all week I’d dream up ideas about the things that I’d love to do with Bobby and Alec when that 'extra pair of hands' arrived. Carol and I went to farms, play centres, on trains, to adventure playgrounds, museums… She took away the ‘disabled’ element of our lives, because with an extra person on board, I was no longer limited.

Between visits to grandma, Homestart and the Portage play groups, plus speech therapy trips to my new friend (now co-editor) Tori, I’d say we muddled through those pre-school years okay, although it didn't seem it at the time.  I was constantly feeling guilty at not doing more 'therapy' all the time. Looking back, just dealing with young twins is hefty enough. I shouldn't have given myself such a hard time, but after diagnosis that's exactly what you do, because you're in a hurry to take positive action. You don't realise at the time that just being fun, energetic and enthusiastic is enough.

I very quickly learnt my limitations – ‘normal’ playgroups was one, since the twins used to head in opposite directions and Alec would very quickly find something life-threatening with which to pass the time (on one occasion, climbing scaffolding). The unusual looks were also off-putting. If you're at this stage, quit the 'normal' playgroups and look for a more tolerant place to take your youngster. You really don't need the stares on top of everything else. 

As the years go by, you become pretty hardened to it, but I'd say toddler groups are the worst when you're feeling vulnerable. Everyone is so darn busy comparing how many words, how many steps, etc. If you're the one with the little person who's different, you're just exposing yourself to social torture. I think I actually cried after some of these groups. If I could visit myself then, I'd say steer clear.

At times I wondered where my personality had gone. Like all mums, my life had become entirely absorbed in the little ones. I remember counting down the months until school began and I'd get a little time back to work out what it had been about.

If I had been sane, I would have given myself some breathing space when they started school. I’d highly recommend it. But no, that would have been far too rational. Besides, I was used to a level of high activity.  So I can see why starting up a magazine represented quality ‘me’ time. After all, journalism was something I’d chosen to give up for the sake of the twins. AuKids magazine was a way of caring, writing and sharing all at the same time. It was – and still is, the perfect way of ‘being me’ without compromising on the twins’ care.

Outside school, life was pretty full-on and although I was happy for the twins to be the centre of my existence, there was no down time. I pretty much came to accept it and I never thought it would be much different. I didn't dare to hope for any different in case I was disappointed. If this was what life was to be like, I felt the best solution was just to accept it.

So it's with a slightly incredulous smile that I'm sharing with you one very happy revelation. My twins have just turned 9 and I suddenly realised this weekend that I HAVE DOWN TIME. 

Alec, once unable to occupy himself at all, is happily ensconced under his duvet playing games on his iPad. When he's not doing that, he tends to play with his trains - not just watching them blankly as he used to, but involved and taking charge.

Bobby is playing Skylanders on the Wii and happy to go it alone for long periods of time, because the autism gives him great focus. I won’t let them do this all day of course, but it’s heartening to note (and I hope heartening for you to hear) that this is the first year I’ve been able to pick up a novel whilst they're awake. 

Gavin has gone shopping for technical bits and bobs and instead of tearing my hair out that he should be helping me at the weekend, I’m quite content to be left alone with the boys. It’s no longer a competition between us about who can squeeze the most 'breathers' out of a single weekend.

Sometimes I'm so busy looking forward in my life and embarking on the next plan to improve social and independence skills that I don't look back long enough to admit that life is easier.

They're nine. Before long the teenage years will be upon us and who knows - I'll have a set of new challenges to deal with and they may even be more difficult than the last. 

So, I think - why not make hay whilst the sun shines?

I’m taking a year out from worrying.