Parenting Piper – The Powerful Gift of Down Syndrome

Our family has the somewhat unique story of having chosen a child with Down syndrome through the gift of adoption. Piper is now 6-years-old and our day to day life is not much different than a parent who is raising a biological child with special needs. But I do recognize that those early months were very different. We didn’t go through the grieving process that most biological parents go through. We didn’t scramble to find the best doctors and resources at a moment’s notice after receiving a post-birth diagnosis. But Piper was by far our scariest adoption yet. We could have come up with 100 reasons not to bring her into our family. But, had we not said yes with mustard seed faith and trembling hands, we would have been the ones to miss out.

our Journey to piper

I first saw Piper’s picture in December of 2016 while scrolling through our adoption agency’s website. We were only 6 months home from China with our 6th child. And we were absolutely not considering starting another adoption so quickly. Not to mention the fact that Down syndrome was never a special need that we had spent much time considering. None of our other 3 adopted children have what is considered a “lifelong care” or cognitive need. However, my brother had recently adopted an infant son (domestically) with Down syndrome and God had been working on our hearts in preparation for us to see that sweet picture. The timing made no sense. The fear was strong. But we quickly rushed through paperwork and flew to China in July of 2017.

At 2 years and 10 months old, the baby we met on that hot day in Zhengzhou China was a tiny 18 lbs. of absolute love. She had starting walking 3 months prior and was still very unsteady on her feet. But she had a healthy appetite and a hearty laugh and Carson (who, at 14 years old, traveled to China with me) and I were smitten. Piper was an absolute champ during our 2 difficult weeks in China. And she blended into our family seamlessly when we returned home with her. We gave her the gift of a family. She gave us the gift of making our family forever better because she’s a part of it.

As a side note – The most gut wrenching moment of all 3 of our Chinese adoption trips was when our agency guide told us that, without a forever family, children with special needs like Down syndrome age out of Chinese orphanages and are sent to mental institutions until they pass away. I will never stop grieving that we live in a world where this is happening.

what is down syndrome?

Chromosomes are thread-like structures within each of our cells that are made up of genes. Most people have 23 pairs of chromosomes, for a total of 46. But a baby with Down syndrome has an extra chromosome (47 instead of 46) or one chromosome has an extra part. This extra genetic material causes problems with the way their bodies develop. People with Down syndrome have certain physical features, such as a flatter face and upward slanting eyes.

Down syndrome can cause all kinds of health issues, including trouble learning and being slower to learn how to talk and take care of themselves. At one time, most people with Down syndrome did not live past childhood. In 1983, the life expectancy for a person with Down syndrome was 25 years. Today, the average life expectancy for a person with Down syndrome is 60 years (and I expect that to only go up as Piper ages into adulthood). Check out the National Down Syndrome Society website to find out everything you ever wanted to know about Down syndrome!

“People first language” is an important thing we’ve learned while parenting Piper. This is the importance of putting the person before their diagnosis in conversation. For example, Piper is “a child with Down syndrome” not “a Down syndrome child”. (And most definitely not a “Down’s child” or “Mongoloid” as they referred to her in China.) This avoids labels and marginalization. All children with Down syndrome are as different as all children are! Piper has many things that make her unique…Down syndrome is just one of those things!

This is what we know to be true – Down syndrome will not define Piper. Piper will define Piper. Our family has made the commitment that Piper’s potential will not be tethered to anyone’s preconceptions. And we always presume competence! What would happen if we assume Piper will do EVERYTHING? What if we keep our expectations, but erase our timeline? We’ll get there…we’ll just take the scenic route.

Down syndrome’s unique health concerns

While we consider Piper a very easy child to raise, Down syndrome definitely comes with some unique health concerns. If you are considering Down syndrome adoption or have received a Down syndrome diagnosis for your biological child, there are a few specialists you will need to see.

• Optometrist/Ophthalmologist – Down syndrome has effects on the developing eye which can impact the proper development of vision. Over half of patients with Down syndrome have eye disease. The need for glasses is much more common in children with Down syndrome than in the general population.
• Cardiologist – About half of all children with Down syndrome are born with a congenital heart defect of some kind. The most common are atrioventricular septal defect, patent ductus arteriosus, and tetralogy of Fallot.
• Otolaryngologic (Ear, Nose, & Throat) – Many children with Down syndrome deal with chronic ear infections, hearing loss, airway obstruction, and sleep apnea. Consistent visits with an ENT and a sleep study by the age of 4 are recommended.
• Endocrinologist – Thyroid problems (usually hypothyroidism) are more common in children and adults with Down syndrome than in the general population.
• Geneticist – A good geneticist can serve your child from birth through young adulthood. They can help with diagnostics, genetics, and neurodevelopment.
• Barium Swallow Study – More than half of children with Down syndrome have difficulty eating and swallowing (dysphagia) which can cause foods and liquids to aspirate into the lungs.
• Occupational Therapist – Children with Down syndrome have hypotonia (low muscle tone). Occupational therapists work with children to help them master skills needed for independence through self-care like feeding and dressing, fine and gross motor skills, school performance, and play activities.
• Speech Therapist – Speech and language present many challenges for children with Down syndrome but speech therapy can help children learn to communicate and process.

*This is by NO MEANS a comprehensive list and I am not a medical doctor. Please consult with your doctor to discuss the right path of treatment for your unique child.

Piper’s Medical Journey

Piper is very healthy! She doesn’t “suffer” from Down syndrome in any way. But here is a list of the health issues that we monitor with Piper.

• Hypotonia (low muscle tone) – Piper sees an Occupational Therapist twice a week (pre-Covid).
• Hypothyroidism – Piper sees an endocrinologist every 4 months to monitor her Thyroid levels. She is currently taking a break from her medication to see if her body can regulate on it’s own.
• Very delayed speech – Piper sees a Speech Therapist twice a week (pre-Covid), but she still has the speech patterns of a 2-year-old (she’s 6). However, she doesn’t have ANY problems letting us know what she wants and her speech progresses everyday.
• Dysphagia – When Piper first came home from China, we could hear wheezing in her chest when she would drink her bottle. A swallow study verified that Piper needed her fluids thickened with a substance called Simplythick. We think she has outgrown this issue, but we will be doing another swallow study this month to confirm.
• Vitiligo – This is a long-term skin condition in which patches of skin lose their pigment. This is not necessarily due to her Down syndrome, but it’s possible that it is related to her hypothyroidism.
• Vision Issues – As you can see in her pictures, Piper rocks her purple glasses! We love our Tomato and Miraflex Frames and she wears them with pride!
• Hearing Issues – Piper has almost no hearing in her right ear. The reason for the loss is a mix of conduction and nerve so she wears a bone conduction hearing aid with a Baha band.
• Potty Training – We’re not there yet. But we’re praying for a breakthrough soon!

Piper Blayke Roush – Perfect in every way

Ok, enough of the technical side of Down syndrome. I am going to close this post with a list of all the ways Piper Blayke is perfect in every way. Because she REALLY is.

• Piper has the sweetest love for her oldest sister, Carson. And Carson is devoted to Piper in a way I’ve never seen in siblings. Parents worry who will take care of the children with special needs once they are gone…but we worry that Carson will try to take Piper to college with her in the fall.
• Piper is not “always happy” as the stereotype goes. But she is kind, stubborn, affectionate, and unbelievably competent and smart. And…usually happy!
• Piper brings joy to all she meets. To know her is to love her.
• Our family wakes in the morning excited to see Piper’s face because we actually missed her while she slept.
• Piper takes such good care of us all, especially her little brother (when she’s not swiping his stash of fruit snacks). She loves to play “doctor” on us with her toy kit. The pain from the shots she administers makes me think she doesn’t have a future career in the medical field!
• Our girl is so tiny but OH so mighty.
• Piper loves all things Frozen, Moana, and Big Hero 6 and she mimics entire scenes with gusto.
• Pipers being born into this dark world is an example of the kindness of our creator.
• We are no longer nervous about what Piper’s future will hold. We are honored and privileged to live in Piper’s corner; shouting her worth and beaming with pride that she is ours and we are hers.
• Piper is my very favorite leap of faith!

“A child being born with a difference is not tragic. It’s extremely important to show our children how capable and wonderfully made they are. If we treat them as flawed or limited, that is who they will believe themselves to be – and THAT would be the tragedy.” – Lucky Fin Project

To learn more about adopting a child with Down syndrome from America, check out the National Down Syndrome Adoption Network. To learn more about adopting a child with Down Syndrome Internationally, check out CCAI Adoption Services.

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