Letting Your Child Drown and Other Great Parenting Advice

What do a geneticist, a mother of three, and a teenage one-armed swim instructor have in common? They each gave me a piece of advice that would shape the course of my path as the parent of a child with an overwhelming disorder. Each was one of those people who comes in and out of your life so quickly, yet with such significance, you can’t help but wonder if you weren’t the beneficiary of divine intervention. Without intent, each told me something I needed to hear just when I needed to hear it most.

The Geneticist

When my youngest daughter had been a NICU resident for 3 weeks, we received her diagnosis, Prader-Willi Syndrome. I knew it long before the geneticist confirmed it. A very astute nurse was the first to bring it to my attention; this rare genetic disorder that would overwhelm me for years to come. She had contacted a geneticist and described my daughter’s case to him. He agreed it was possible and recommended she be tested. 

While we awaited the test results, I did exactly what the doctors told me not to do, I researched online. Much of what I found about Prader-Willi Syndrome wasn’t pretty. It was painful to read, painful to picture my little girl enduring, and painful to imagine the havoc it would wreak on our young family. I prayed often that this wasn’t to be her fate, or ours. However, something deep inside told me to get ready. Like it or not, this would be our very formidable future. 

Limit Less

On the day we prepared to take our daughter home, we met with a room full of doctors. The geneticist spent some time explaining this disorder to us. While he spoke with us, he mentioned all the horrible things I had read online.

He told us we might hear things like “she will never walk or talk”, “she will never be able to attend school”, or “she will never live on her own”. He dismissed all of them. He then gave me the first significant piece of advice I would receive as the parent of a child with special needs. 

His advice was simple, “Just let her show you what she can do.” 

This was a game changer for me and would define every dream I would ever have for my girl. We left that day with hope for her future, and for ours. She would not be defined by the limits of others. We would, and have always, set the bar high for her, and more often than not she has risen to the challenge.

The Mother of Three

During my daughter’s early years of childhood, I got involved with fundraising for research on her disorder. I found out very quickly you can either wallow in pity for your child and pity for yourself, or you can do something productive. Even the smallest acts make a difference. 

We participated in our first 5k fundraiser for Prader-Willi Research when our daughter was nine months old. A year later, following a 2,500 mile move west, I organized our own 5k fundraiser in our new town. I followed that with more 5k runs, charity motorcycle rides, a charity dinner, a handbag fundraiser, cowpie bingo, and ran two marathons all to raise money for research on her disorder. It was a lot. And her medical needs were a lot. Her disorder was consuming me. 

When I wasn’t caring for her needs, or running her to doctors’ appointments, I was reading up on her disorder, looking for better specialists, researching potential treatments, searching for the right medical diet, fighting with insurance, trying to plan fundraisers and running a household for six. The urgency I felt to ensure a bright future for my daughter, had allowed her syndrome to completely engulf me.  

Obsess Less

It was at the second 5k I hosted, that I received the second substantial piece of advice. I was speaking with a mother of three, whose oldest child was also diagnosed with Prader-Willi Syndrome. At one point in the conversation, she told me that this disorder has a way of taking over and that I can’t let it. 

I had never even mentioned to her that I felt consumed by it, hadn’t told her how busy I was; in fact, I had spent the day and had approached our conversation as a smiling, happy, hopeful hostess. She saw through me though. As a veteran mom of this disorder, she knew. And, she was right.

I took her message to heart, and I yanked back from the hold this disorder had on me. I didn’t research as much. And, while I still know fundraising is very important, I pulled back from that too. It should be organized by those with the time to do it right and with more help. The most important change though, came when I stopped thinking about the disorder so much. I no longer felt such an urgency. My focus shifted back to the people and things that I loved, and I started to live in the moment with my family and friends once again.

The Teenage One-Armed Swim Instructor

I firmly believe swimming to be the best exercise, especially for a child with low muscle tone. So, when my daughter was ten years old, I enrolled my little hypotonic heroine in swim lessons. 

I will admit I was a little surprised when her instructor bobbed up out of the water with a left arm that ended at the elbow. Recently graduated from high school, he taught swim lessons for a few months before heading off to college.

My daughter’s time with him was brief, yet in that short time, a few hours a week, that young man did more for her than many medical and educational specialists have done.

He was patient with her, always gently encouraging. And when she showed up to practice, upset and defiant, as is her nature on occasion, he spent time talking with her as she sat on the edge refusing to get into the water. He spoke softly, reassuring her that he understood, eventually distracting and cleverly coaxing her into the pool.

Rescue Less

One evening at practice, I watched my little girl jump off the side of the pool as she had been instructed to do. It had taken a few weeks for her to build up the courage to do so, but she had finally done it. She struggled to begin swimming once she hit the water. Her instructor, only inches away, waited, and waited. Eventually she started moving her arms and legs in her uncoordinated way that looks nothing like swimming, but somehow keeps her afloat.

 “Sometimes, you gotta let ‘em drown a little!” he yelled in my direction. 

He must have been concerned with my thoughts on what had just happened, as he repeated the phrase again when she got out of the pool for the day. He needn’t have been concerned; he was absolutely right. 

Obviously, he wasn’t advocating for letting children drown in water, and neither do I. He was advocating for allowing children to face adversity on their own especially when you know they are capable. He had been working with her for several weeks, building the skills she needed in that moment and he knew she was ready even if she wasn’t so sure. 

Today’s parents tend to react too quickly when they see their children struggle. They rush in to handle situations their capable children should be managing on their own.

For special needs parents, it’s often understandably worse. Adversity is a constant in our children’s daily lives. It seems almost cruel not to rescue them when possible.

Yet, too often throwing our kids a lifeline stifles their progress, preventing them from learning and doing things independently. It is in the struggle that our children learn how to thrive. As hard as it may be, letting them “drown a little” is exactly what they need.

Words to Parent By

As an indubitably imperfect parent, I repeat all of this advice to myself from time to time; and as significant as these wise words were for me, I have come to realize that they are good rules to follow for any parent. 

We should always have high hopes for our children. Our expectations for them should never be based on limits set forth by others. If they don’t meet expectations, slightly readjust the bar and know that the work getting to the goal is far more valuable than the goal itself.  As much as our children want our approval, they need us to believe in them more. 

So long as that belief doesn’t turn into obsession. Our children’s lives should never fully consume us. We were individuals with our own goals and interests before our children were born, we need to continue to pursue them whenever possible. For those with medically complex children that may involve grasping onto help whenever it is offered, a task often easier said than done.

Whether it’s the realization that childhood is too brief or demanding medical needs, it can become difficult to prioritize ourselves. Oddly enough, we need to do it for our children; we are much better parents if it isn’t our only identity.  

Finally, letting children struggle a little isn’t a bad thing. Learning how to cope and problem solve is essential for navigating life as an adult. It is perhaps the most important opportunity we can give to our children. 

So, parents, let’s have faith in all our children can accomplish. Let’s set high expectations for them, then take a step back and watch what they can do. Not only will our children survive, they will thrive.