What is the Value of My Child by Joanna Kent

We know these people exist. The people who think that children like mine are drains on society. That if you don’t have something to offer the world, your life has less value. What we don’t typically see is someone posting their opinion on social media and not expecting that there will be repercussions for their words.

The other night while scrolling on Facebook, I came across a post. Screenshot after screenshot of horrible, disgusting, “freedom of speech” arguments, stating opinions on how it is a waste for children like mine to be offered in-person school for five days a week while their child will only get in-person twice a week. I want to start by saying, this is not my school district, I do not know any of the people involved, but I know the argument all too well. People who can’t contribute to society and only take, how much should we offer them?

Judgment is easy, especially when you don’t have all the facts. What is hard is looking around and seeing the value in something that you don’t understand.

The irony was this was something I have been struggling with a lot lately. I realize the cost to care for my son is very high. He needs doctors, therapists, a dedicated aide, individualized school plan at an out of district school, teachers, transport for a wheelchair, respite workers, the list goes on. He needs. He will always need a higher level of care, and he will never contribute to the world in the direct way that my daughter will, but that doesn’t mean he doesn’t contribute, or he doesn’t have value.

He teaches you patience – to never give up and push through.

Without my son in this world, I wouldn’t be writing this on this page. I wouldn’t be saying these words for everyone to hear via the audio. Without my son, countless people would not be employed, now and in the future, as caregivers, teachers, and so many other fields that touch our lives. Without my son, my daughter wouldn’t learn the lessons a special needs sibling does and the lessons she will teach because of that. Without my son in this world, the world would be a lot sadder place for those who love him and those who would never get the chance.

The reality holds true; my son himself does nothing to help. He doesn’t even feed himself, use a toilet, tell us he’s hungry or thirsty. He does kick, pulls hair, bites things, pulls everything on the floor, or towards his mouth. If anything, he is a considerable risk to himself and the people around him at times.

But then I thought about it more and realized all the things my son was. He is a teacher. He teaches you patience – to never give up and push through. He teaches you endurance – that this struggle is long and hard. He teaches you to live in the moment – because tomorrow something could happen and he could regress again. He teaches you to think outside the box, create, innovate, originate ideas to keep him safe, make him stronger, keep him engaged, help him communicate.

I know that people think he is and will be a drain of resources, costing more than they think he is worth. I know they don’t see the value in all that he has to offer. There are days that I have been so beaten down by the reality of my life with a son so impacted that I have questioned if I am strong enough, brave enough, smart enough, tough enough, kind enough to be his mother, and he shows me I am.

So the question remains, is my kid worth getting in-person learning before his typical peers in his district before his sister even…yes, yes he is.

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Joanna Kent
Joanna is mom to a "typical" 7-year-old and a special needs 4-year-old son with a rare genetic disorder. She is a full-time mom, caregiver, and content creator for OHS. She wants to share experiences hoping that others can benefit from what she has learned along the way.

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