Wednesday, 7 February 2018

Autism: a little glimpse into our life

This was me, earlier today, trying to keep calm but feeling despondent. Sash is supposed to go overnight to a residential home today, and as it's a change of routine, he's been rather agitated to start with, even though he enjoys visiting the place. His anxiety turned into a full-blown meltdown, when the school transport didn't arrive. We were all dressed up and waiting, with Sash pacing nervously by the door.
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
Having a child with autism is like playing a Russian roulette on a daily basis, or walking through the minefield. You never know when the next explosion is going to happen.
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.
or
"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.


10 comments:

  1. I know exactly how you feel. Even though my son is on the higher end of the spectrum some days I feel like I am navigating a maze. I hope that Sasha enjoyed his stay once he got there and you had a much needed break. (which we all need much as we love them)

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    1. Thank you, Alison! Sasha had a good time at the resi, I have just talked to them on the phone, as we needed to discuss the future dates. And Eddie and I had a family film night, with popcorn.

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  2. You're right, I can't imagine what it is like for any of you to live with this. I can only offer a virtual hug. I know how I feel when my son struggles with things and the effect that has on both of us. That's hard enough, but I know that it will change for us some day. I hope you all got to enjoy the break eventually xx

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    1. Thank you for the hugs, Mary, and your kind words. I think I was a bit upset yesterday, when I wrote it. It would have been a slightly more mellow post if I did it today. We had a good evening with Eddie, watching Ballerina on amazon and eating popcorn.

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  3. It's important for people to write "real" blogposts like this, that aren't all rose-tinted. Glad to hear Sasha settled in, for him but also for you, so that you can breathe for a couple of days and enjoy some much-needed time out, for you and also Eddie. I admire the way you juggle everything, looking out for everyone's needs (except sometimes your own !). Sending love and hugs (and a bottle of gin or a nice cup of tea and a slice of cake, when needed !!)

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    1. Thank you, Cheryl, a slice of cake would be lovely! Or a big box of chocolate, and sod off the calories. :) These short breaks are a bit of a breather for all of us.

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  4. I do understand fully where you're coming from and your frustrations with the transport. I'm not a parent to an autistic child, but an autistic teacher in a residential school and a parent to a profoundly disabled child (now an adult) in full time care. Sometimes what can seem like the simplest of things to process to the none autistic mind can cause the biggest upheaval to everyone around. I spent 4 hours once with a student at a cinema as our driver was late and it interrupted her routine and we had had to start the process over from scratch, the other students had to return or they would've been upset and the student I was with got herself ready to go the 2nd time when we had to pass the pick and mix section again and she wanted another go, but the cinema staff thought they were being helpful by saying no and she trashed the foyer, this is just one of many situations I've experienced over a long period of time when we were in the UK. If you need to chat anytime, just message me, big hugs

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    1. Thank you, Suzanne, what to us seems a commonplace thing, for an autistic person could be a great upheaval, I see it in my son, and your story confirms it too. It would be wonderful if people around saw people with autism or other special needs not as problems but as human beings who need more understanding.

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  5. What an honest, truthful and painful post, Galina. I admire you and any parents that deals with a life changing (for all involved) illness for the resiliency that it takes to carry on every day but like you said, you're a mother, there is no escape whatsoever (from anything! NOt even simple things like early wake up calls :)
    It is such an obscure, multifaceted situation and it's like a black hole, an unknown ride.. that is what it seems from the 'outside' and from what I have formed in my head listening to friends who have an autistic child... Sending you hugs which I would hope to be able to give you in person at some point in the near future
    xxxx

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    1. Thank you, Fede, I hope we'll meet each other again some time soon. With autism, there are so many different shades and indications of condition. Everyone's situation is different.

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