The Pressure of Raising a Child With Down Syndrome

My 5 year old daughter throws fits. She kicks, she screams, she runs. When she misses her nap, it’s worse.

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When playing with other children, my daughter sometimes hits. Most of the time it’s out of anger. Sometimes, it’s just for fun.

At times, my daughter makes it her mission to do the opposite of what I say. I say “bed time,” she runs for her toys. I say “put your jacket on,” she strips naked.

Sometimes my daughter stares off into space and picks her nose. I once caught her eating a booger. My reaction wasn’t pretty so I’m sure she’ll do it again. In fact, she’s probably eating one right now at school.

Some say these are “typical” behaviors for a 5 year old. I agree. Only thing is, my daughter, Willow, isn’t typical.

Willow has Down syndrome.

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I wish that wasn’t a factor, but it is. Not for everybody, but for some. That’s hard. For some reason, Willow’s extra 21st chromosome comes with an extra list of expectations.

My two older children did everything I mentioned above and more. While I know they raised a few eyebrows, I never felt the pressure I feel with Willow. That’s because, with my other children, bad behavior was viewed as typical, just a stage of life. At worst, my parenting skills were questioned.

With Willow, it’s different.

 

When Willow acts up, I feel like it’s not just my parenting proficiency that is viewed negatively. Down syndrome is too.

Even though we’ve come a long way, Down syndrome still carries a largely negative image in the United States. Statistics back that claim. They show that a vast majority of pregnancies involving a child with Down syndrome end in abortion. Sadly, many parents are basing their decisions on old, out-dated information.

I imagine many parents feel like they’re just not strong enough to raise a child with special needs. Truth be told, I didn’t think I was strong enough to parent Willow when I learned her diagnosis. 5 years in, I still question my abilities. But, I feel that way about parenting my other kids as well.

This momming stuff is hard!

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What makes it harder is the pressure to change society’s view of Down syndrome. There are already enough negative images out there, I want to world to see the positives. Sadly, I think many in this world aren’t interested in those. They’re just looking for evidence to support their theory that people with Down syndrome aren’t worthy. Worthy of respect, inclusion or even life.

While a tantrum is typical behavior for a child Willow’s age, some see it as uncivilized, uncontrollable behavior due to her Down syndrome. The same goes for her hitting. And sadly, to some, Willow’s gazing and nose grazing is attributed to her mental state. It doesn’t matter that most every preschooler likes to pick.

And that’s where the pressure comes in.

As one of my friends put it, “I don’t want to be the one to give Down syndrome a bad name.” She told me about a trip to the grocery store that ended with her toddler in tears in the check-out line. My friend said she felt like running, leaving her cart and heading home.

What child hasn’t thrown a fit in a store at some point in their life? The only thing different in this case is that my friend’s daughter carries an extra 21st chromosome. She was afraid people would view her toddler’s tantrum as something other than typical. She didn’t want to give the world another reason to fear or dislike Down syndrome.

I get it.

While Down syndrome carries many challenges, like health issues or learning delays, I would never in my dreams call it a negative experience. In fact, parenting Willow is one of the most rewarding experiences of my life.

I want the world to see that parenting a child like Willow is possible. It’s worth it. She’s worth it!

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I’m not denying the negatives. I just don’t want those to be all the world sees. Because, let’s be honest, parenting any child is hard. Sure, I’ll admit, parenting a child with Down syndrome carries an extra burden. It’s just not the burden most would think…

My burden is proving that Down syndrome is beautiful. Spreading that truth. There’s a lot of pressure on me to do that. Thank God, I’ve got support… in the form of a 5-year old, music-loving, Trolls obsessed occasional nose-picker.

Ain’t she beautiful…

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9 thoughts on “The Pressure of Raising a Child With Down Syndrome

  1. What a beautiful daughter, and you are an amazing advocate. Thank you for verbalizing that struggle-I didn’t even realize that I, too have been struggling to advocate for Down syndrome as a whole. You bring such great awareness to the situation. You and Willow are both amazing members of this amazing community

  2. She is beautiful and makes my day when I get to see her. She has come so far that I don’t get to see her as much 😢. The future looks bright for this little girl 🙌🏻💕

  3. You are worthy! I love how you are always advocating for Willow as a whole. I feel extremely blessed to have gotten the opportunity to have been able to get to know and work with Willow and your family this year. She brightens so many throughout the day with her charm, that even when she does have her “testing moments” her charm and caringness outweighs the rest. Love your sharing and would love to share a hard copy with our staff.

  4. We are awaiting the results of our genetic blood test, and this was a joyful blog to read! I kept reading it thinking, “Well, this is exactly like my kids! Nose picking? Check. Hitting? Check.”And, so on. ☺️ Thanks for sharing the joy of your daughter!

    1. I’m so glad you found joy in my writings! Congratulations on the newest member of your family! Please know that no matter how that genetic test turns out… you will be richly blessed by your child! Let me know if you have any questions or just want to talk!!! Thanks again for reading! (jenmitsch@hotmail.com)

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