If you’re the parent of a special needs child or adult, you’re probably in exhaustion mode right now.
The truth is, you were depleted before, but this is an entirely different and additional load you were not prepared to carry.
I know your heart sank when the schools closed. I know you felt the sick feeling in your stomach when your 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 you wonder how you’ll do this for weeks on end. I know you aren’t sleeping because your child cannot either; there hasn’t been enough to do and tomorrow it will be the same.
I know you panicked thinking about what would happen if the four foods your child eats isn’t available because of hoarding or lack of delivery. Truly, what would they eat then? We know they just wouldn’t eat and it crushes you. I know you feel the ground shake beneath you when you think about your child becoming sick; he doesn’t have the immunity to survive, or he wouldn’t be able to receive help and might need to be sedated.
These are your nightmares. And you’re now living them.
I know you’re trying your best to gather as many indoor activities as possible, but that your child may not be interested or be able to partake. Hour by hour, you realize this is even more unfair to your child because, under normal circumstances, he or she has already endured an insufferable amount of social isolation, inequity, and exclusion.
And I know your child is hurting, too.
I know he cannot understand the severity of the situation and cannot understand why his daily routine has been eliminated. I know she is asking over and over why she can’t go to school. I know he is frustrated because he can’t sit at his favorite eatery, or because she can’t visit her one and only friend. All of the things your kids have come to love and do outside of their homes, recreational or therapeutic—all gone.
This is hard. Harder for you than for the average individual or family.
So now more than ever, you hope.
You hope that people around you will have enough empathy to understand why your child is melting down. You hope that 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.
So please don’t give up on hope. Because we will live through this and our children will have their lives back.
We will remember how strong we really were, even if in 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.
So for all the things our kids don’t know or have at this time, at least they know and have us.