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The Value of Time When Parenting a Child With Down Syndrome

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If someone were to ask me what has changed most for me since having a child with a disability, I could sum it up in one word: time.

That’s it. It’s time. The way I think of it, the way I use it, the way I value it. It has become my most precious commodity, a cross to bear, a penalty to pay and a gift to give.

There are days you spend wishing it away. Counting down the hours until a particularly stubborn toddler can be put to bed. Multiplying minutes by milliliters as you attempt to get valuable ounces of milk into your newborn. Willing time to fly as you wait for your child to come out of surgery. Watching days tick by while you wait for that all-important paperwork to come back from the school, the doctor, the insurance company, the government…

But mostly you just want more of it. Or you want it to go more slowly.

Last year, when we were discussing the most appropriate classroom placement for my 4-year-old daughter with Down syndrome, her teacher said I needed to give her the gift of time. She meant I needed to slow down and be patient. She meant I needed to let her develop at her own pace.

And here is where time is both my cross to bear and my gift to give. Because I try. I try so hard to let her blossom in her own time. But it is so hard to slow down a world that is spinning so fast, and so our instinct is that it’s easier to speed one person up than to slow everyone else down. It’s as if we’re running for a bus and I want so much to let her walk, to let her be independent and get there in her own time. But I also know if I don’t scoop her up and carry her, we will miss the bus.

Farah's daughter wearing colorful socks.

Parents of children with disabilities are often perpetually straddling a line, wanting so much for their child to be able to participate and fit in. We work so hard to bring them up to speed and to give them an edge and then watch, crestfallen as the goalposts are moved over and over. We bring our kids to special classes and tutors and therapies, hoping to catch them up. But then we see parents of typical kids investing in apps and test prep and preschool from 2 years old, and we know there is no way we can “catch up” and it is exhausting and defeating. We stand in one place yelling out to those ahead “Wait! Wait for us!” while at the same time calling behind to our child, “Come on! Hurry up!”

What’s the answer? Do I want typically developing kids to be… less “smart?” Well, no. I mean, I have a neurotypical kid as well. I don’t want him to be at a disadvantage either. Do I wish the world would slow down in order for kids like my daughter to keep up? In a perfect world, yes I do. But I know that’s not realistic. So what exactly do I want?

I want people to learn to value time like we do since having a child with Down syndrome. I want them to know that life is not a race. I want them to know there is so much beauty in the journey, and that a plateau is a wonderful place to sit and take in the view. I want them to understand that really, in the end, time is all we have and love is all we need.

Originally published: April 26, 2020
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