When I Let My Kids With Special Needs Go Off on Their Own
It’s been an eventful weekend for my family at the one of the largest indoor water parks in the country. For the first time ever, the kids went their own ways independent of us. This wouldn’t be anything new for most parents of typical kids. But our 14-year-old daughter and 11-year-old son are not, nor have they ever been typical.
They were both born premature (weighing 2 pounds, 8 ounces, and 1 pound, 15 ounces). They’ve both had significant developmental delays that have required many hours of early intervention therapies. Physically and socially, they’re about two to three years behind their peers. Between the two of them, they have several chronic illnesses and medical conditions including, Chiari malformation, Klippel-Feil syndrome (KFS), Tethered spinal cord syndrome (TCS), congenital scoliosis, cardiac heart block and cholesteatomas. They’ve had 22 surgeries combined. And they both are also severely hard of hearing and rely on bilateral hearing aids. Like many other deaf and hard-of-hearing (DHH) children, they have a difficult time with social language and social cues. But with continued speech and language therapy, they’re making great progress in both of these areas.
They still have a ways to go…
My husband and I have a way to go as well…
We’re working hard to help our kids feel and be more independent. For so long, they’ve relied on us for so much, and we’ve been right there loving and supporting them. But we also understand that for them to reach their full potential, they need to learn not to rely on us. So, this trip we set a goal of encouraging the kids to leave our sides and play on their own. We wanted to encourage them to explore the park without us. We rented a cabana so we would all have a central meeting point in the park, and we made sure the kids had the lay of the land before encouraging them to go and enjoy the park on their own. Because the kids cannot wear their hearing aids in the water, we agreed as a family to use some simple signs like “now!” “eat?” “toilet?” “let’s go!” and “help!”
With a few safety reminders and a hug and a kiss, off they went in different directions. They weren’t at all nervous, but I was a bit of a mess. Our 14-year-old was much more daring than she’s been in the past; she tried at least half of the water slides. Our 11-year-old is not big fan water slides, rides in general and heights, as he has inner ear and vertigo issues, but he loved the wave pool and the play area for younger children. He may not have gone on a single water slide during this trip, but he played independently away from us and his sister for the first time ever. And he had a great time.
I wish it were that easy for me.
There were a few times during the day when my husband and I were alone in the cabana, and we didn’t know exactly where the kids were. We both started to worry just a bit. My anxiety began to increase. Our son was the first one to disappear out of sight for an extended period of time, and, I hate to admit it, but I panicked just a little inside. I couldn’t help but think, Did someone grab him by the hand and lead him out? I reasoned with myself. He is socially delayed but also very cautious… and he always listens to the rules… He appreciates guidelines and structure… I walked around the park for a while until I spotted him having a wonderful time under the big bucket of water with another little boy. Breathe, told myself. And I went back to the cabana and told my husband (who was also a little concerned) where he was and what he was doing. Our first instinct was to have a talk with him about going too long without checking back in with us. But we discussed the fact that he was doing what we told him to do — have fun and to be independent. This was good stuff, right? Right. But honestly, it didn’t feel that great; it felt scary. But we dealt with it.
And then a little while later, we realized that some time had gone by since our daughter had checked in with us. And then I had the thoughts that most parents don’t typically have. Our daughter has a cardiac condition. Now, mind you, she doesn’t have any physical restrictions at this time. But, her cardiologist has stated to us in the past that if she were ever to become dizzy and pass out to “not waste time trying to revive her, but call 911 immediately because her condition is a little unusual and she has a lot of stuff going on.” This mixed message has never sat well with me, but it is what it is. We monitor her closely and stay on top of her cardio appointments, but, I worry about her.
I began to walk the park just hoping to get a visual of her, but I couldn’t find her. I was not as worried about her leaving the park with a stranger. I was worried that she had a cardiac issue and no one would notice. At one point I had a clear mental vision of her passing out in the wave pool and lying at the bottom where no one could see her until the waves shut off. Or maybe she was in a far corner of a play structure out of the view of the watchful life guards laying facedown under a slide… I began to panic.
And then I scolded myself for being so dramatic. And at that moment I saw her having a wonderful time climbing a huge staircase to the blue water slide. All smiles. Two times in one day I had momentary panic attacks only to find my kids playing and just having fun like typical kids.
Let them go, I whispered to only myself. You have to let them go. And I did. And they continued to have a wonderful time. And I had a frozen cocktail, and practiced my deep breathing/relaxation techniques.
On our last night at the park, my daughter and I decided to enjoy the lazy river one more time before calling it a day. I was lounging in my inner tube, floating along with the soft current behind my baby girl. The lazy river is edged by waterfalls, which I gently paddled around to avoid. But not my baby girl. As I watched her, I noticed that she paddled directly into the action. She used her arms and her legs to propel herself forward with such purpose right into and under the falling water. She looked exhilarated and empowered as it rained down onto her petite frame. And, she just plowed right through. I fought back tears as I watched her. I couldn’t help but feel that it was somehow symbolic. This has and always will be her way. She has faced so many challenges in her 14 years on this earth, and I know she will face many more. And she always just does what needs to be done, no matter how afraid she might be. She just plows right on through whatever is in her way.
At first I was going to call out to her and tell her how to avoid the waterfalls and help guide here down what I perceived to be a safer and easier path. And asked myself, Why would I do that? And so I just let her go.
I let them go.
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