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To Parents of Children With Disabilities Trying to Stay Safe During This Outbreak

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If you’re the parent of a child or adult with a disability or health condition, you’re probably in exhaustion mode right now. The truth is, you were probably depleted before, but this is an entirely different and additional challenge you were not prepared to face.

I know your heart may have sunk when the schools closed and your child’s therapies and day programs were canceled. I know you may have cried thinking about what you would do if we got to a situation where even our movement would be limited. After all, what would we do without our car rides and park time?

I know you have limited options for respite, if any. I know you fell to your knees wondering what would happen if you got sick and there was no one to take care of your child. You may be alone with no support and wonder how you’ll do this for weeks on end. I know you aren’t sleeping because your child cannot either; there may not be enough to do and tomorrow it will be the same.

I know you may be panicking, thinking about what would happen if the limited foods your child can eat aren’t available because of hoarding or lack of delivery. Truly, what would they eat then? They might just not eat, and that’s terrifying. I know you feel the ground shake beneath you when you think about your child becoming sick. They might not have the immunity to survive, or they wouldn’t be able to receive help without being sedated.

These are your nightmares. And now you’re living them.

I know you’re trying your best to gather as many indoor activities but your child may not be interested or be able to partake. Hour by hour, you realize this is especially unfair to your child because under normal circumstances, your child has already endured an insufferable amount of social isolation, inequity, and exclusion.

And I know your child is hurting, too.

I know your child may not be able to understand the severity of the situation or why their daily routine has been eliminated. I know your child may be asking over and over why they can’t go to school, or sit at their favorite eatery, or visit their one and only friend. All of the things they have come to love and do outside of their home, recreational or therapeutic — all gone.

This is hard. Harder for you than the average individual or family.

So now more than ever, you hope.

You hope people around you will have enough empathy to understand why your child is melting down. You hope a friend will reach out to see if you need help. You hope the weather is nice enough to go outside. You hope your child makes it through this and life gets back to normal.

Please don’t give up on hope. I believe we will live through this and our children will have their lives back. We will remember how strong we really were, even if at the moment we were breaking. Most importantly, our children will remember what they loved most about this time with us — our stories, our cooking, our playtime, our walks, and our love for them.

Our kids don’t know or have a lot of things at this time, but at least they know and have us.

Getty image by Lightfield Studios.



Originally published: March 18, 2020
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