What are the limits for a special needs child with Down Syndrome?
Society would have us to believe so many limits are in place. Limits on what they will be able to accomplish, limits on their physical development, limits on their educational opportunities, limits on their personal relationships, but what does a mom say about the limits for a special needs child with Down Syndrome? Trista shares some insight.
Limitless
You can imagine all the interesting comments I have gotten over the past couple of years regarding my daughter having Down syndrome. Comments bred out of ignorance, assumptions and generalizations. Even things that came up in my own thinking before having my daughter with special needs. I do know that it’s time to start breaking through those comments to show the world how important people with different abilities are.
It was a complete surprise to me the day I first heard the doctor suspect my unborn baby had Down syndrome. I thought maybe I misheard what he had just said or perhaps he himself was confused. The twenty-week ultrasound showed she had a severe heart defect that would require surgical repair soon after her birth. As if that wasn’t enough to take in and process, the idea of being a mom to a daughter with special needs sent me for a loop.
I sat there laying on the bed in complete shock as he continued on saying I could choose to go through further testing to confirm his suspicions.
I was only 31 at the time, with two other typically-developing healthy girls. This far into motherhood it never even occurred to me to anticipate something other than what I already had.
A couple of weeks later, it was confirmed through a non-invasive blood test that the baby I was carrying in my womb did in fact have Down syndrome. The Genetic Counselor offered reading material over the phone when she called to deliver the news. Her voice sounded distant and full of sadness as she said explained the test results to me.
I sat on the couch after that phone call as my mind began racing, my heart pounding as I tried to wrap my mind around what this would mean for me. It felt like completely new territory to me, having very little experience with people with Down syndrome. What was my life going to look like moving forward? I sat and worried about the future.
I turned to social media as I explored personal accounts of how deeply touched people have been knowing individuals with Down syndrome. The majority of articles I came across seemed so positive and I wondered why I had had a different idea in my own mind I had made up regarding people with Down syndrome.
I thought back to those that I knew with Down syndrome growing up. I didn’t make it a point to get to know them or their families. I let the opportunity slip right through my fingers. And if it weren’t for the baby in my own womb, I wondered if I would have gone my entire life missing out on an entire group of the most beautiful people I have ever come in contact with.
Her first few months were wild and chaotic as heart surgeries and hospital stays dominated our lives. She fought hard through it all right from the beginning. I sat with her day in and day out in the hospital, holding her tiny body close to mine praying God would heal her. That the heart surgeries she was enduring would make her heart strong and whole. She made it through and eventually it was time to take her home.
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My daily routine changed drastically as tube feedings and therapies and appointments began taking over my schedule as time escaped me. I didn’t venture out with her much at first because she was so fragile in the beginning.
The times I did, I often got comments about her feeding tube taped to her face. That always brought up the fact that she had gone through major heart surgeries and eventually lead to me sharing she also had low muscle tone due to her having Down syndrome, all of those things combined making it difficult for her to eat on her own.
A few times, once I the words Down syndrome left my mouth, I was met with a blank stare, a head tilt and often the words “I’m sorry.” At first, I didn’t know how to respond to this statement. The words hurt as I knew there was nothing to be sorry about. I was at the very start of it but I already knew the strength and fight this little girl had in her and it made me proud to me her mother.
The more times it happened, the more I began realizing that the people I was coming in contact with who would offer their apologies were people who maybe had not been personally touched by a person with Down syndrome. There can be a lot of assumptions made about people with different abilities. I’ve heard plenty of them over the past couple of years. Things like, “She’s going to live with you forever,” or “she will never learn how to talk.” Someone even said she would never be able to communicate with me.
The further down the road I get into this journey with my daughter, I realize that I too was once quick to put limitations in place before having her. But she is showing me that those limitations are not her own set of limitations and my job is to presume competence and pave the way for her explore the endless possibilities available to her, just like my other daughters.
If she decides someday she wants to go to college, she can. If she decides someday she wants to get married or live on her own, she can. If she falls in love with a certain career one day and decides she wants to pursue it, I will help her pursue it. I will encourage her in everything that she does. She is a strong little girl and I will not put limits on her.
Sure, we work hard together getting her to do certain things that come fairly natural to typically-developing kids who don’t have to even think twice about. But the work that we both put into it causes such a time of celebration when she masters it and instills a deep sense of accomplishment in the whole family as she shows she is capable of anything and everything.
With the negativity in today’s world in the media and on the pages of social media, we have to stand together, standing up for our children who are worthy. These are children who are world changers, with hearts bigger than one could ever imagine. Let’s propel them forward showing them the possibilities in life are endless and work hard together towards those goals while tearing down old stereotypes and generalizations.
Trista is a warrior mama to three little girls, raising her girl tribe alongside her husband in sunny California through all of life’s twists and turns. Her youngest daughter was prenatally diagnosed with Down syndrome, has endured two major heart surgeries, and has proven to be the greatest gift she has ever received causing her to see life through a different lens. She invites you follow along with her story as she seeks to shout the worth of all of her beautiful girls, encouraging other mamas on their own journey of motherhood. She chronicles her adventures over at tristapark.com where she talks candidly about the good and the hard as a way to connect with other mamas facing hardships in motherhood. You can also find her on instagram @mrs_t_park
appointment and what Down syndrome might look like. I looked through my Facebook friends ultrasound pictures to look at their babies nasal bones and their feet. After some google searches, I found out that Down syndrome causes sandal gap. It’s a gap between the big toe and the second toe. Back to Everest toes… that’s why it looked like her second toe was longer than her first. I got the call from my doctor when we were at a spa in Taos, New Mexico that the blood test came back and “confirmed what we were suspecting”. I went outside and called my husband and my parents and cried. I received a text later saying “it’s ok to mourn” this didn’t sit right and I knew from that point that I had to show everyone that this baby is still my perfect baby.
Up to that phone call, everyone was telling me they were praying for healing of our baby girl. That killed me. I felt like people were saying she isn’t perfect. Even after the blood test came back positive I had people tell me that the results could be wrong. Deep down I knew that she had Down Syndrome as soon as the doctor said he suspected it.
Our next appointment was on a Friday afternoon, for a fetal echocardiogram with a cardiologist. She told us that Everest not only had a hole in her heart but two holes and common valve which would require surgery at around 8-10 pounds or 4-6 months old. Also, she had a coarctation of the aorta which would require surgery at birth so I’d have to deliver Everest there. She said that Down syndrome causes low muscle tone and that could delay feeding so we could be in the nicu until the second surgery. Four to six months, three hours from home. After all of that news my husband, my parents and I were all stunned. We could barely talk to each other. Then the Maternal fetal medicine doctor came in, the only thing he told us was it looks like she doesn’t have a stomach…. again silence from everyone. He asked if we had any questions and left. The genetic counselor came in to chat with us and the mfm popped his head in again and said that the other doctors didn’t mention the missing stomach and left again.