Being a parent of a child with….well, in Britain we say Special Needs. How is that different from being a parent full stop? Why would a different brain or body make a difference to how we view ourselves as parents? After all, every child needs looking after, feeding ,clothing and loving…
But, and here I sigh…… it is different. It’s different emotionally. It’s different because we have different expectations and judgements. It’s different because we most likely have more to do….it’s different because we have to interact with so many social agencies (at least in the West where we are affluent..)
What are some common feelings? Guilt, anger, shame, resentment……
What are some common thoughts? I ought to do better………………..
I should love unconditionally all the time……………….
I shouldn’t feel angry…………………..
My daughter hasn’t been sleeping well the last 7 weeks. She has hardly slept at all. In fact, she is so exhausted she can barely make it through the day. Her nights are spent tossing and turning, bathed in anxiety. Her autism has returned to cloak her in comfort to the point that we have virtually no contact with her. Hardly any words. No real soul to soul eye contact. And this from a girl who could have multi-looped conversations, who, 2 months ago, interacted with the new children across the road to such an extent, she was invited to stay for supper!!!! The first such invitation in 16 years…..Success! She was happy. We were happy.
Why is this happening? I don’t know. I think I ought to know. The doctors don’t know (and really don’t care- that’s another battle). Pills don’t touch her. She is determined to stay awake.. I suspect that on an emotional level she’s bereft. Her big sister has left home. That’s it. They lived together all of my daughter’s life and now she’s not there any more. No comforting sounds from the room next door, only 3 places at the meal table…. It is huge. I can’t bring her big sister back and I don’t want to.
Yesterday we took my daughter down to see her big sister at University. A 5 hour journey each way for a 3 hour visit. It was so she could see with her own eyes the reality of something she cannot conceptualize. Her sister’s flat with its stairs, her room, her bed……My daughter sat on her sister’s bed cradled in her arms, and slept……..
Sometimes I just feel sad. Yesterday was one of those days.
Filed under: autism, parents of autistic children, parents of special needs children, special needs | Tagged: autism, parents of autistic children
Yes. I feel sad too, reading that. You tell it like it is and I thank you for that. Let us hope that seeing the reality of where her sister is now will help. It’s a good thing to try.
As for “I shouldn’t feel angry ……”
Yes, I agree that anger can be difficult and we would often like to not be angry but it seems to me you have reason to be angry. It seems to me that helplessness and anger go side by side, and you must be feeling that too. And these feelings are important and need to have some life, some place, some acknowledgement.
And then maybe ask for help. What can I do? What action can I take?
Which is why I think it was a good thing to try taking her to see her sister’s flat. I hope it helps.
With love.
Philip
I am one of Katy’s Son Rise team. I play with her every Monday for 2 hours. Last week was the first time I couldn’t “see” her behind her eyes.
Even when there was eye contact, there was no-one at home. I hadn’t appreciated until I read your blog that retreating into the safe space of autistic behaviour is one way that Katy copes. Understanding that means I can take the time to be with her, on her terms, and do my best to simply be there for her in as loving a way as I can.
Thank you so much for being willing to share this. I’m sad too.
I love your site!
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