First a warning - please don't read this post if you're feeling down. Pop back tomorrow for something a bit more upbeat. If however you have an interest in living with autism please read on...
Today is Toby's birthday. Normally children's birthdays are a busy affair; a party, lots of presents, friends and lots of excitement on the part of the birthday boy or girl. Not so with Toby. Toby's birthdays come and go without him being any the wiser. He gets to eat more cake than usual (something he definitely appreciates), he gets some new stuff and he does quite like balloons but other than that he's completely unaware of the significance. I on the other hand find this day one of the most significant in my year. It's probably the hardest day for me and one I never manage to journey without tears.
It's impossible for me to get through this day without reflecting on what might have been had he not been autistic, what it would be like to have a normal family life and to be able to do normal family things all together. I mourn for his lost future - you never realise how much you take your children's future for granted (that they will grow, find a life-partner, have kids of their own and live mostly happy, fulfilling lives) until it's gone. Toby does have a future but it's a world away from what I would wish for him. It's uncertain and dependant upon others. I hope to always be around to care for Toby but I'm mindful of the fact that I may not be here to look after him for as long as he needs me.
His birthday is also a marker, a measure if you like of his progess and development. Autistic children have characteristically spikey developmental profiles. Which means that whilst he has the physical abilities of any child his age, in some areas such as speech, play and social interaction he still scores at a 12-18 month old level. Only time will tell wether he will ever develop speech. He is making progress with communication using a picture exchange method (more of that another day) and so there is a hope that his speech development is just grossly delayed.
I carry my sadness deep inside and most of the year I genuinely feel mostly cheerful. I feel very lucky to be able to appreciate beauty and joy in small things such as the changing seasons, a beautiful sky, the song of a blackbird, Amy's laughter and Toby's hugs. This is the one day a year when it spills over and I let it. You need one day a year of self-indulgent melancholy - it's not good for the soul to bottle up any strong emotion. So forgive me my wallowing and please don't be put off visiting here again. I don't usually talk about how I feel like this but somehow it seems easier and a bit theraputic to write it down, a bit like making a paper boat and launching your troubles down a river on it - or maybe it's because the delete key is only a click away and so I can erase all this if I chicken out!
As Amy will tell you, one of my favourite sayings is "you have a choice in life..." something which I strongly believe. Today I am choosing to allow myself to feel sad, tomorrow I will be choosing to feel happy. So on a happy note here are some pics of Toby enjoying his summer...
