Parenting My Daughter With a Disability Feels Like Riding Roller Coasters
I loved riding roller coasters when I was growing up. I loved the feeling of thrill and excitement as I waited in line to get my turn. I was always confident because I knew someone would be with me or I’d be sitting between two people. As I watched from the bottom, I could hear loud screams and joyful laughter from the passengers as they went through each and every curve or tunnel. I felt a sense of fear but my excitement was still there. I knew I was going to have a blast! And as my turn came, we had to follow some directions and rules to keep us safe. The person operating the ride made sure we either got our seat belts on or the metal bar holder was held close to our body. When all passengers were secured, he took his position and started pushing some buttons and pulling some levers. I felt like my life was on his hands. Smiling nervously to whoever I was with at the moment, I’d take a deep breath and brave through the whole ride.
For me, parenting a child with a disability is like riding a roller coaster. Not just like the ones I rode in when I was little, but several different kinds that are available out there. And as I take a deep breath and brave through every ride, I still carry the same heart: I know I am going to have a blast! And I have the hope Polly will have a blast, too.
There are several different kinds of roller coasters based on the themes and designs of the tracks and cars. Some tracks are simple and pretty manageable to get through. I can see myself in this ride when I am able to use my talents and skills in coming up with an idea or strategy on how to help Polly be successful in a certain situation or event. I can easily assess, plan, implement and re-assess our trip to the grocery store. Choosing which grocery store has less people and clutter. The more relaxing and organized, the better for Polly as it lessens her sensory overload. She will constantly battle with sensory triggers, but at least eliminating some can help her be successful. Choosing a playground that can help her with practicing her social and gross motor skills is also something I can learn to manage through several visits and exploration. It’s like taking Polly to her first ride on a roller coaster and I can tell her, “Don’t you worry Polly, I got you!”
Some roller coasters are hard and difficult to get through. I can see myself in this ride when none of my talents and skills are working and all I can do is look at who is riding with me, aside from Polly, and ask for help. My Mom (Gramms) has always been in the ride with us. She would readily help with Polly from me when I am spent. She would feed Polly for dinner after I get exhausted giving her a bath. She will stay up with Polly while I am passed out on the other side of the bed and Polly is still bouncing around at midnight. She continually provides financial help since I have been in and out of jobs. It’s like taking Polly to a roller coaster ride and telling her, “Polly, don’t you worry coz Gramms will take care of us!”
Some roller coasters are terrorizing. It gives you a shock (while in it) and trauma (afterwards). I can see myself in this ride on that moment I first encountered Polly having seizures. I saw her eyes half opened while her body convulsed and all of a sudden she passed out. I seriously thought she died right in front me. In desperation, I checked her pulse. In panic, we called 911. Once they came, my brain seemed confused but I was able to give the right answers to their questions. The trauma? Well, how about checking her every 5 o’clock in the morning for the next two weeks thinking she would have another episode right at the same time? It’s like taking Polly and Gramms’ to a roller coaster ride and telling both of them, “Don’t you worry guys, I’m gonna be staying up all night watching you guys sleep!”
Some roller coasters have 360 degree turns, water splash, and reverse features in them, all in one! I can see myself in this ride when emotions and behaviors are so intense that I wish the ride will stop. Trying to figure out what triggers her frustration leading to meltdowns is like going on a 360 degree turn. It’s like, “Whuuut? My hair gets pulled several times and I need strategies to help her.” Or “She stayed up all night pacing back and forth in the room and I have to research what is wrong using my zombie brain?” The water splash comes when you have been all prepared for a very important IEP (Individualized Educational Plan) meeting and all of a sudden Polly accidentally ran into the kitchen pull-out table, smashed her eye, and blood was all over. How about the reverse ride of having to go back and remember all those horrific moments because you have to document, talk to the teachers, therapists, doctors, case managers, family and friends — including the feelings that came with it. It’s like telling the person who operates the ride, “Hi God, is it over yet?”
There are still more different kinds of roller coasters to explore but I realized that after each ride we took, I gained different sorts of things. I met parents along the way who have gone through or are still going through the same things I am going through. Some of them were able to give me good advice since they’ve been in the ride for a while. Some of them became my buddies during the ride as we raised our hands to surrender to every feature there was. I developed new skills that I never thought I would have. I gained a certain amount of hope and courage to help me go on the next ride. Taking a deep breath and braving through the ride is like taking a leap of faith. It’s having that deep sense of fear inside of you and going for it with all that you’ve got. And remember the person that operates the ride? He makes sure I am secured and safe during the ride. He makes sure I will come out different every single moment I take a ride.
When was your last roller coaster ride? What were the themes, designs and features you had in it? Are you still in it or you just got out of it? Go ahead and ride another one, see how you’ll come out differently this time.
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Thinkstock image by Jacob Ammentorp Lund