Autism

Usually during the summer months I switch to another craft and give sock knitting a rest, actually all knitting is hibernating during the summer months. The warmth transfers to my hands and the wool does not flow as easily. But it’s a different story with cotton yarn. And honestly, our house stays so cool that even with the door open so Arnold, our Covid dog, can go outside any time he wants, it doesn’t heat up. At its hottest, we might reach 76 in the house, that’s 76 Americans.

So I continue with my latest obsession of stuffed animals and their clothing. I like knitting baby clothes because they go much faster than a sweater for Stephen or perhaps a shawl. But believe me, knitting for a little stuffed toy is the ultimate in almost instant gratification.

Here is the mouse outfit in progress:

My obsession with these animals led me to a blog that has consumed me. The woman writing it creates fantastic patterns I fell in love with and so I bought a rabbit and a mole pattern. They also got me more interested in her blog itself: little cotton rabbits.

As I was roaming around it and reading a post here and there, I realized that she does not have an easy life: her son, now older, I think 20, is autistic. And though autism comes in many forms and shapes, her son is further along the spectrum than many others and does not have speech. As with any and everything I encounter that I don’t know enough about, I immersed myself. I hit the autism category on her blog and read all the posts related to her son. Perhaps that his name is Toby, our son’s name, is what struck me first.

Since encountering the blog, I have read The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida. And I’ve watched the movie, I think streaming on Netflix. The book is available for free from the online library. The movie didn’t impress me as much.

Our lives change forever when we have kids. Mine certainly did. But if your kid is autistic, your life changes even more and for much longer. And though we might all worry a bit what happens to our kids once we die, it is elevated to another level with an autistic child. The blog has opened my eyes even further to what it means to parents of children with difficulties they need our help with. And I’m so grateful for that. I hate walking blindly through life and being oblivious to other’s struggles. Though I don’t know how to be an ally, I will expect myself to act compassionately and supportingly when I return back to the world and encounter someone with autism.

Someone once told me that we all have to bury the children we didn’t get and accept the ones we did. But a much nicer and more moving way of putting this is the following (I’m glad I don’t have to read this to you as I can’t read this aloud without tears):

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WELCOME TO HOLLAND by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

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