I called the transport, but apparently the driver got the wrong idea, and decided he didn't need to pick us up this morning. It took another 40 minutes for a different car to arrive, by which time Sash was distraught.
I've been reading the latest book by Naoki Higashida "Fall down 7 times get up 8" recently, mostly dipping in, I still want to read it properly. Naoki is a non verbal young man with autism. His books give an invaluable insight on what it is to live with autism.
"When an agreed time is altered or a destination is changed at the last minute, I can act as if the sky's falling in. I need time to accommodate my inner state to the change of plan"
That is exactly how it feels, when I observe Sash and his adjustment, or the lack of it, to the change in routine, plan or timing.
|Despair by Marie Bashkirtseff|
I stopped visiting autism-related forums, as there is too much pseudo-cheerfulness and forced optimism going on - along the lines of "Proud to be an Autism Mom. I wouldn't change a bit of my child, s/he is blessed by God, blah-blah-blah".
Quite a lot of people on the high end of autism would say "I have autism, and I'm fine". Yes, you are, if you can communicate and express yourself, you can read and write, and obviously are on a high-functioning end of the spectrum.
We - and as autism affects the whole family in our case - are on the rigid, extreme-anxiety-ridden, noise-sensitive end of the spectrum. And life is hard. For my younger son, who has to adapt to his brother's way of life and having to sacrifice a lot. For us, parents, but most importantly, for Sasha himself.
If I could change my son's condition by some magic, I wouldn't think a second. Purely for his sake.
Our lives are ruled by his condition, but how much more difficult it must be for him. Being him.
I cannot even comprehend what it is not to be able to talk. How frustrating it must be not being able to say how you are feeling, or if something hurts - if you have a headache or earache, if you are cold or hot...
To be frank, there are days when I feel an acute despair, and even this morning I thought: "Just shoot me, that would be more merciful". But that is a very self-indulgent thought, and not kind at that either.
When Sash was diagnosed with autism, it was a huge blow, like the end of the world. I was suicidal. But I had to plod along. I went to the GP and asked for help.
I had some counselling sessions, which helped to some extent, at least to look at my life from a different angle and taught me some coping techniques. I can't say it works all the time.
There are days when I'd like to escape. I fantasise of leaving it all, but I know I can't. I'm a mother.
Why am telling you this? Isn't this blog all cakey-bakey, tea, books and toys?!
I'm not looking for sympathy, just for understanding, what it is, our life with autism.
Please don't tell me when we happen to mention our son's condition that he must be a genius. And don't pat me on the hand, saying: "What a shame! What a pity!"
There's no shame. And I don't want your pity.
Another phrase that sometimes makes me wince: "I can only imagine..."
Actually you cannot, unless you have a child with special needs yourself or work with them, You can never imagine how unrelenting the exhaustion can be. How deep the sadness.
And another gem:
"But at least your other child is normal..." Yes, that's a consolation.
"You are very brave to decide to have another child..." (told to me by quite a few people when I was pregnant, who knew about Sasha's condition).
Just be kind and considerate to people like us. Kind words uplift people.
This photo taken by Sasha during our recent flight home from Italy is a symbol for me.
We're adrift among the clouds, and sometimes we don't have the foggiest of where we are going.
But there is light too... there is always hope.