The other day I went into my old unused Snap fish account
While there, I came upon an old photoalbum – from the time when R was 1 year old – and we were visiting another old friend of mine
She has a beloved dog Abby, who is like her child- we would tease that R and Abby were cousins
Abby is all sweetness and was really patient with R
R, in turn, was entranced by her- that January of 2006
But later that year, as he had a regression and went down the road that would eventually lead to an diagnosis of autism, he began to avoid dogs
Neither parenting nor suffering is a competition
But I believe, that the subgroup of autie mums and dads, whose children had regression , have a very heavy cross to bear
( For readers who don't know autism - there are some children who are born with autism. Some other children develop typically and around 18 months of age have a regression into autism. And then there are some kids who are in between. This topic also is fraught with controversy. )
People talk about the loss of language in regression.
But it is more than that
How does a child know that they should look at a camera – and then stop knowing that?
How do they stop knowing what their name is?
When do you realize that the best way to talk to your 3-yr old is to write to them, not speak to them?
And how do they stop loving dogs?
This last bothered me most.
For I can deal with many things.
But for R to lose a source of joy?
That really hurt.
I made peace with my new normal
Surprisingly, found even more joy in this new life with autism, then life before
But, this one sorrow remained
Yet with time, this too is healing
Some of this peace has come from reading Jill Bolte Taylor’s words in her powerful book “My stroke of insight."
In this book she speaks of her stroke and her recovery
“It was vitally important that I have…freedom to let go of my past accomplishments so I could identify new areas of interest.. I needed people to love me – not for the person I had been but for who I might become.
When my old familiar left hemisphere released its inhibitions towards my more artistic side …I needed by family and friends to support my efforts at reinventing myself. At the essence..I was the same spirit they loved….
I looked the same..but my brain’s wiring was different now as were many of my interests, likes and dislikes”
I read (and reread) this.
I make it my new mantra and try to dissolve this last bit of hurt
I put my arms around all of this new life and hug it close to me.
Who R is today and what matters to him, is much more important than who he was
If he is afraid of dogs today – then so be it
( Abby understands, I think )
R's sweet spirit, his gentle heart
The way he is learning everything back
Talking, playing, even posing for the camera
As I do his bedtime routine, he finds a cut on my hand and very concerned kisses it better.
He settles on my lap with request for a tight hug
Oh the joy of this child!
And I think, what's not to be grateful for?
“The bend in the road is the end in the road....if you refuse to take the turn"
This post has been written by K Floortime Lite Mama. Her blog is at Floortime Lite Mama where she talks about her life, her charming son, autism and apraxia
This was beautiful, my friend. So many of us know that pain, and it's hard to come back around to the new joy. You do it so well and so eloquently. Thank you.ReplyDelete
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Such a warm and lovely post.ReplyDelete
Oh, K, this really spoke to me today. Especially the quote: “It was vitally important that I have…freedom to let go of my past accomplishments so I could identify new areas of interest.. I needed people to love me – not for the person I had been but for who I might become." I think we get so caught up in being angry at autism for "taking" our child and want the one we knew back (especially if there was clear and obvious regression) or we yearn for the child we imagine might have been, that we lose sight of the beautiful person right there before us. Thank you for your beautiful words and insights.ReplyDelete
I've always loved your inherent optimism, but also your recognition of the things we struggle with. You've figured out that balance which is so hard imo.ReplyDelete
I read this book quite a while ago and don't remember specifics of it, but it was amazing at how much of what she wrote clicked with me. She's an adult and I have a young stroke surivivor but she knew so much of what we did about living with a stroke. It took me a while to actually read the chapter where she experienced the stroke, it struck me to the core.
You've reminded me to go back and read this amazing book again.
This is a gorgeous, poignant post. Bolte Taylor’s experience has been so helpful for so many. I had not thought of it in terms of autistic regression, but I do see how it would resonate. Letting go of what was in order to fully embrace what is. A very difficult thing to accomplish, especially when we perceive our children to be suffering, but the only path to peace.ReplyDelete
I'll be thinking of this for a long time. Thank you.
Thanks so much Alysia and Lisa and Beth - its one of the hardest things to resolve - coming to terms with this thing. Only someone who has walked in our shoes can understand .Thanks so much for the compliments.ReplyDelete
Jos I thought of L a lot while reading this book - I can well imagine how tough it must have been to read that chapter -Would love to hear your experience in re reading this book .
Michelle - what a lovely complement - its funny I completely was thinking autistic regression when I was reading of her stroke experience - there is so much research on what causes autism - but I never found anything on the biology of regression - what is happening inside the brain
Particularly somethings that accompany regression like aphasia , apraxia etc are so clearly something happenning at the neuron level
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