Down Syndrome Awareness Month: What Support Really Looks Like

It takes work to be friends with my family. The life of a parent of a child with a disability is hard, that’s not a secret. People tend to think they understand the hard parts: sleepless nights, endless doctor’s appointments, advocating for their educational rights, and on and on . . .

You want to know what the hardest part is? INCLUSION.

You WANT your kid to have friends. You WANT your child included in the neighborhood games. You WANT to be able to have some adult conversations with your friends while your kids ride their bikes.

For us–for parents raising children with disabilities–there’s something that NEEDS to happen that you have no control over in order to make this happen. Your friends that have typical children have to put in work to understand your child, so that they can help their children understand your child. 

This sounds so easy. Sure, everyone wants to teach their children the beauty of differences. Everyone wants to teach their children that we all have worth regardless of our abilities. 

But are you willing to allow my child to hurt your child? Yeah, read that again.

Are you willing to let your child cry because they got too close to my child while he was overstimulated and scratched their face? Are you willing to let your child be upset because my child took a toy out of their hands and ran away with it? Are you willing to invite my child into your home, potentially without me there as a crutch, and get to know what they are like without the whole world of stimulation around them?

Are you willing to understand the vast amounts of therapy we are doing to correct these behaviors, the amount of medications we’ve tried, and the amount of times we’ve cried uncontrollably to our support teams because we just can’t figure it out? Are you willing to do the VERY hard work, have the exhausting amount of hard conversations needed to explain to your child why MY child does these things and doesn’t get “punished” in the same way they would? 

See? THIS is where it gets tricky.

THIS is where people start getting uncomfortable. And, THIS is why most of the parents of children with disabilities that I know have no social lives. They are secluded from family functions. It seems so simple to simply say you will not allow your child to be around a child who gets violent. But, is it? Is it that simple?

My girls love their brother. We do the work, the hard and time consuming work of helping them understand their brother. My girls know his cues, his triggers. They know when to get away from him and when to give him space. They still get hurt by his hands from time to time. My girls know he still loves them, and they know the scratches heal. 

And you wanna know what? They are stronger and more empathetic because of it. They have emotional intelligence and conflict resolution skills beyond their years because of it. And your kid could too, but not without risk.

So to all the families living with a child with a disability that has moments like this, I see you. I know how hard it is to be you. I know how lonely it can get.

And to all the families with typical children that are willing to do the work to be friends with families like mine, you are the real superheroes. You are the village, the support, the vibe this entire world needs. You are doing the work that is NOT going unnoticed. And, you are stepping up and giving us more than we could have ever dreamed of simply by NOT giving up on us and hiding away.

I want to be clear, I don’t expect anyone to take this risk.

For the ones that do it for us, and you know who you are, your effort is everything. EVERYTHING. I promise, the emotional intelligence your children gain from the presence of my child will be beyond anything you could imagine.  

We love sharing the stories of families in our community to help others feel seen and heard. Local mom Ashley shares about her child’s dual diagnosis of Down Syndrome and Autism.

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Jamie Freeman
Jamie is a Michigan girl since birth. Formerly born and raised in Dearborn Heights, MI, Her husband Mark and her live in Chesterfield and have three perfect kiddos. Benny, born in 2013, Ellie, born in 2016, and their youngest Norah, born 2019, are full of giggles and joy! Jamie works full-time from home for a technology company, and Mark is a stay at home dad. After Benny was born, Jamie became an advocate for the Down syndrome community with a fierce passion for caregiver support. She is the President of her 501(c)3 non-profit, The Down Syndrome Diary. This organization sends diaries around the world bringing together families whom have had a baby born with Down syndrome. The diaries are meant to provide support to these families as well as be a resource to new parents just receiving a diagnosis. You can find Jamie's voice all over Detroit Mom, or on her social sites. You can purchase her book, The Down Syndrome Diary, on Amazon with proceeds going towards donations of new copies to new and expecting parents.


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