On Autism, Family, Grief and Kindness

During the funeral for my mother-in-law last week, I made sure Prince stayed with me. I carefully explained exactly what would happen beforehand and although the girls went with my parents, Prince stayed by my side the whole time.

Prince is 17 years old and has autism. He goes to special school. He struggles with anxiety so was, of course, very worried about what the funeral would be like. I think he thought we’d all be wailing and moaning and falling over one another or something, because beforehand he was constantly asking me if it was ok that he was sad, but not very, very sad, and he was glad Grandma was not suffering any more (he didn’t word it like that but I think that’s what he meant). He also said, quite bluntly, that although he liked Grandma, he didn’t know her very well, so he wasn’t as sad as he would be if it was his other grandmother, whom he knows very well. Which is fair enough. I told him not to say that to anyone else, though!

To be honest, when we would take Grandma out (she lived in a lovely care home for the three years prior to her death) I was mostly thinking about how to manage her with her frailty and dementia (make sure she is not distressed or too tired, keep her upbeat and happy by talking to her and constantly reassuring her, even if I’ve already done exactly the same thing a dozen times or more), Prince and his autism (minimise anxiety, keep him passive), boisterous or bickering girls (make sure they’re not forgotten in the need to put Grandma and Prince’s needs first) and a husband who gets easily distracted and might not notice if his mum is about to topple over or something (keep an eye on him). This family time was lovely – my MIL was lovely – but could also be quite stressful, so encouraging anything other than quiet, non-anxious, absorbed-in-his-radios behaviour from Prince was never really the priority. I don’t mean to sound mean towards my husband. He had all the same things to deal with, along with my PTSD and CFS, so we have always had to look out for one another. My point is that I didn’t seek to encourage interaction between Prince and his grandma.

On the day of the funeral I made sure Prince was with me, to make sure he was ok. I didn’t want to risk my parents saying the wrong thing to him, however well-intentioned they may be. I sat in the pew first, followed by my son and then my husband. During his sister’s beautiful eulogy, Frank began to tear up and I saw him wiping his eyes and nose. I felt bad that I hadn’t sat in between them both, but I couldn’t move as that would distract from the eulogy. Then came my turn. I stood and walked to the front of the church and read a poem I had originally written after the death of Frank’s dad. As I came to sit back down, I deliberately sat in between Frank and Prince. I took Frank’s hand. He squeezed mine. The tears began to flow. I reached for the tissues and thanked God that I had kept it together until after my poem. Then, to my surprise, Prince took my hand in his. He didn’t say anything, but this little gesture from a young man for whom touch is anathema made me realise what a wonderful boy I have. That simple act of taking my hand meant so much to me that I can’t really describe it. You won’t know what that’s like unless you’re a parent of a child with autism yourself. Prince saw that mummy was sad and he wanted to make me feel better.

I love my boy. I love his innocence. You can take your neurotypical sons. I’m glad they have parents who love them. I’m glad they will have the chance to ‘succeed’ in life, to go to work and have a family of their own. But I wouldn’t change a hair on my boy’s head.

This is a large work I’ve called you into, but don’t be overwhelmed by it. It’s best to start small. Give a cool cup of water to someone who is thirsty, for instance. The smallest act of giving or receiving makes you a true apprentice. 

Matthew 10:42, The Message

I think my boy is a true apprentice, even if he doesn’t know it.

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