This is a guest post by Heidi C., a dorm mate from college, who writes at This Circus Life. I’m so honored to reveal to you this tiny piece of her family’s story, which I asked her to share with us after her touching Facebook posts for Down Syndrome Awareness Month in March. Even though this topic is not related to the kitchen, I strongly believe that we are called to be good stewards of all our gifts: from serving the poor with food to caring for the environment to understanding the lives of other humans in our society. I know this story will open your eyes and heart as it did mine. Here’s Heidi:
Like many people in today’s world, I hadn’t had much experience interacting with “Downs kids” growing up…..definitely not enough interaction to realize that the term “Downs kids,” in and of itself, is offensive.
With the high termination rate of pregnancies once a Down syndrome diagnosis was made, there just weren’t enough people with Down syndrome around in my life to educate me as to what it really meant to have an extra 21st chromosome. (Trisomy-21 is the technical name for Down syndrome, as it occurs when an extra copy of the 21st chromosome develops).
All I knew about Down syndrome, I learned from the few characters in TV and movies. Those characters gave me a glimpse of what life with Down syndrome could be like, but it wasn’t a complete picture.
Many years later, my husband and I were discerning adding to our family through adoption, after a case of pre-eclampsia in a pregnancy. He had much more experience with special needs than I had, and the medical training (he’s a physician) to be comfortable with caring for a child with special needs. After a friend pointed us in the direction of an advocacy group called Reece’s Rainbow, we fell in love with a little boy with Down Syndrome.
I read all of the books. I joined all of the Facebook groups. I thought I had an idea of what welcoming a child with Down syndrome into our family would look like, and in some ways, I was right. In other ways, this little boys surprised and changed me and my parenting.
I thought that I was a compassionate, understanding mom before our little guy came home a few years ago, but he’s taught me so much more about relationships, supporting each other, and pure love than I’d ever imagined.
After reading about my son on Facebook on World Down Syndrome Awareness Day (3/21, since it’s trisomy-21), Katie graciously asked me to share some of those ways with her readers. While not all people with Down syndrome have the same challenges (it’s a very wide spectrum, and some have very different challenges), here are a few ways that welcoming a child with Down syndrome changed my life.
1. How Low Muscle Tone Changes Life for a Child with Down Syndrome
We live in the tundra of the United States. There’s a lot of snow. When our son first came home, he *hated* the snow. Now, he’s come to love it, especially sledding and snowshoeing. However, like many people with Down syndrome, one of his challenges is that he struggles with very low muscle tone.
Playing outside is HARD WORK for him, and he tires easily. His low muscle tone is not specific to play and physical activity, though. It’s throughout his whole body. That means that things like coughing effectively are also really difficult for him, and clearing his lungs of what would be a simple cold for the rest of us is much harder for him.
This is why we protect him so much during outbreaks of illness. A simple cold for us turns into pneumonia for him very quickly. We now self-quarantine during times of the year, instead of pushing through “just a cold” and heading out into the public. I now realize that a simple cold for me can be deadly for someone else.
2. Kids with Down Syndrome Don’t Know When to Stop (& Neither Do Other Judging Parents)
I can’t let other people’s opinions stand in the way of my parenting.
Our little guy loves to eat. Just like you and me, he has his favorite foods (pancakes) and his least favorite foods (meat). Like many little ones, he loves his dips: ketchup, sour cream, ranch dressing, you name it. If he can dip it, he will eat it.
However, unlike you and me (and like a lot of people with Down syndrome), he doesn’t have a satiety reflex. He doesn’t get that,“Oh my goodness, I’m full and I need to stop eating” feeling like the rest of us while eating, so he will just keep eating until he literally makes himself sick.
I often feel that other parents are watching and judging us when they see us taking something he obviously is enjoying and loving away from him at a meal. That fear of being judged would often prevent me from doing what I knew was right in parenting years past.
Now, I know that what they don’t see is that we can see his stomach starting to distend, and the signs of impending vomit in his face and actions. He can’t stop himself easily, so we have to help him.
3. Life Skills are More Difficult, But Not Impossible
Simple tasks are harder for him than the other kids.
We’ve had to implement systems that I never thought I’d have to (we have 5 “typical” kids, in addition to our son with DS). Through much hard work, and accommodations like a snack drawer with pre-packaged snacks for each child, outfits in Ziploc bags (that he picks out), or keeping a training potty accessible (with clean underwear in a basket next to it, in case of accidents), our little guy is working his way through life skills like feeding and dressing himself.
His extra chromosome makes things more difficult for him, but not impossible. It’s more work for me, but the pride he feels when he can come down for breakfast, already dressed, and go to the bathroom without asking for help is worth the extra 5 minutes I have to spend before I can climb into bed at night.
4. How Kids with Down Syndrome May Need to Focus
Sensory-seeking experiences have become a way of life for our whole family. If you see me walking around with a 50lb child in a backpack, it’s because he needs that physical touch in order to feel calm.
Having him “vacuum” or move heavy boxes around isn’t taking away his freedom or childhood….it’s helping him stay focused. The common phrase for it in the in therapy world is “heavy lifting,” and it’s HUGE for our little guy. If he starts to struggle with impulse control or starts to swing wildly through emotions, we know that he’s starting to feel overwhelmed, and seeking that sensory input.
A long bear hug, a ride in the backpack, or yes, pushing around a shopping cart full of toys might be all he needs to get himself calmed down and re-focused. It’s often loud and difficult for an introvert like me (who doesn’t like to be touched or cuddled), but it’s what he needs in order to thrive.
5. Other Medical Issues Often Come with a Down Syndrome Diagnosis
A Down syndrome diagnosis often can come with future doctor’s appointments and specialists.
People with DS are more susceptible to certain medical complications. In some cases, it comes with a co-diagnosis of cardiac issues or something like autism.
In our little guy’s case, it came in the form of leukemia. We are grateful to say that our little guy is officially in remission, and has been relapse-free for 6 years. Leukemia has changed our lives forever, though, as we will be watching for side effects of chemo for the rest of his life.
Right now, that translates into every-other-year check-ups and yearly echocardiograms. We don’t have any way of knowing what it will mean in the future, but we are hopeful that even those appointments will slow down over time.
6. Kids with Down Syndrome CAN Learn
Our son has changed my teaching style. Our family has done both the traditional schooling route and home education. Currently, we’re homeschoolers, and I don’t foresee that changing in the near future.
He can and does, progress academically, just like his siblings. He just doesn’t do it in the same way – it takes him a little bit longer, and we make a few modifications in his curriculum that the other kids don’t need. I’ve had to ask for more help and guidance from professionals (and include them in our daily activities), and I’ve had to be more creative with his schooling.
He can count and identify objects and animals, match shapes and colors and identify them, and he’s working on letter recognition and writing (he has mastered his name, and the beginnings of his siblings’ names!).
The next time you hear someone use the word “retarded,” think of our little guy. He may progress more slowly than his siblings, but he’s fully capable.
Note from Katie: I have heard from many parents of adults with Down syndrome that our online video ecourse that teaches kids how to cook is a great system for life skills, with our repetition and fun memory phrases. I feel so blessed to help out families and surprised that God could use our course in this way!
7. People with Down Syndrome Aren’t Always Happy!
He’s not “always happy”. This might be my biggest frustration with how people with DS are portrayed in tv and movies and might have been my biggest misperception of what life with DS was like. Our son reminds me of that Longfellow poem:
There was a little girl,
Who had a little curl,
right in the middle of her forehead.
When she was good,
She was very good indeed,
But when she was bad she was horrid.
Our little guy is like that. He feels ALL emotions, and he feels them intensely. So yes, when he’s happy, he’s very, very happy (which is probably 99.9% of how people with DS are portrayed)…..but when he’s angry, he’s very, very angry. And when he’s sad, he’s very, very sad. And when he’s scared, he’s very, very scared.
A friend of mine, who also has children with Down syndrome, described it as teaching her family how to be emotionally healthy. Her kids “feel what they need to and when they are done with it, they are done.”
That’s exactly our little guy. He burns fiercely with every emotion, and then we move on. No holding it in, no tempering of his feelings, just pure emotion. He’s not always happy, he’s fully human and experiences the full range of emotions as I do.
8. My Son Can’t Talk, But He Sure Can Communicate
He’s changed our family’s understanding of communication. Our son is non-verbal.
We’re working with speech therapists to help increase his muscle tone in his jaw, mouth, and tongue (did you know that your tongue and mouth/jaw muscles actually did most of the work in forming sounds and words? Yeah, I didn’t know that either before he came along!). Until then, he uses a communication device (an Ipad) and American Sign Language.
I’ve learned sign language and learned that the rest of the world doesn’t really know what to do with a kid like him. We’ve had people refuse to give him candy on Halloween because he didn’t “say trick-or-treat” (even though he was signing “please” at the time), and we’ve been the recipient of hundreds of stares and gaping mouths as he “sings” along to hymns and prayers at church. He’s taught me that even a person who doesn’t talk has something valuable to say.
9. He Loves Better Than All of Us
Our son has taught me about love. As I mentioned before, he feels all emotions intensely and that includes love. Love for his siblings, love for his family, love for his favorite toys (dinosaurs, haha).
He has taught me that love isn’t what the world thinks it is. He forced me, really our whole family, to slow down, look at each other in the eyes, and learn how to love a person for who he is, not who we want him to be. Our son does this instinctively, but the rest of us had to play catch up.
We had to learn how to let go of perceptions and love a person for who they are at that moment in time. It’s no longer “I love you because you make me laugh (fill in the blank with whatever else we are always telling each other)” it’s just “I love you because you’re you.”
That’s all that matters, and that’s enough.
Would I Welcome a Child with Down Syndrome Again?
I often get asked by others who are considering adopting a child with Down syndrome if I would do it again, knowing what I know now. My answer?
An emphatic “yes!”
Life with our son is amazing: at times, that can be amazingly *challenging*, but most of the time, it’s just amazingly *blessed*.
Without a doubt, welcoming a child with Down syndrome into our family has changed me (and my family) for the better. I’m not naive, and I know that a Down syndrome diagnosis can be scary and challenging at times, and if you receive one while pregnant, it can seem incredibly lonely and isolating.
Please know that I would really, truly, like to walk alongside you if you find yourself in that situation. You are not alone, and there is a huge community of people like our family who will hold your hand every step of the way.
If you have questions or want to learn more about life with Down syndrome, please feel free to reach me through my blog at This Circus Life. I will do my best to help you.
Thank you for allowing me to share my little guy with you!
RELATED: Read another family’s story from the Huffington Post and watch this touching video from Voices for the Voiceless. Share this Facebook post from a mom of 2 Down syndrome kids who is reaching out for sympathy and education for the rest of us.