When my husband and I were caught off-guard nineteen years ago when our daughter Julia was born with Down Syndrome (I was only twenty-four years old), we had a lot of, “What if’s?”
For example, when Julia was only three years old, she jumped behind the steering wheel of my car, I took a snap shot of that moment. As I stared through the lens, I couldn’t help but secretly wonder if driving would ever be a possibility for her. Fifteen years later, I would get my answer. When she was finally old enough, Julia asked if she could learn how to drive a car. I explained to her that the class could be done, but she would have to work real hard to pass the 35 question state permit test that could not be modified. She agreed and so the journey began. I enrolled her at the high school’s driver’s education program in which they informed me that in the first few sessions, the permit test would be given. If by chance she would not pass the test, then she could not continue the class. I felt pretty confident, because Julia had studied a lot over last summer and I knew she could do it. She expressed how she wanted to do this, because she was the oldest of the three sisters and she had to get her permit first (I guess a little competition doesn’t hurt).
Well, in February, she passed the test! The school administration called me and said that it was a go. However, since she was eighteen years of age (and an adult), she had to pick up the driver’s permit at the DMV (driver’s facility). Much to our surprise, we went to go pick up the paperwork and they insisted that Julia had to take the test again. Not because of her disability, but in the state of Illinois, if you are eighteen years or older, the test needs to be taken only at the DMV. So, the state employee looked at me coldly and said: “Ma’am, if your daughter knew this three weeks ago, she will know it now. Please take a seat and we will take her back”. I cautiously sat in the waiting area and soon enough, Julia popped her head around the corner with her thumbs up. SHE PASSED IT AGAIN!!! It was one of my PROUDEST moments as a parent! Not only did she prove herself to the hesitant staff at our high school, but also to the driver’s facility in the state of Illinois. Julia did get her permit before her sister Krista, and that was her goal! By the way, she did the same thing while learning to ride a two wheel bike.
Julia finished the instructional portion of Drivers Ed and she continues to practice almost daily. However, her sister Krista just got her driver’s permit and so now we have two learning at the same time. I feel safe taking the girls to practice at the cemetery where I learned, while my husband Mark, already has them out on the real roads.
I don’t know how this will end up with Julia, but I do know, that the outcome is her choice. With all her evaluations, screenings and other who may have doubted this, at end of the day, Julia now knows how to operate a vehicle. My questions have been more than answered. What was once my dream, has now become hers.
In fact, I try not to discourage any of my three children in doing what they truly want or believe they can accomplish. I’ll end with a favorite quote: “If you have the courage to begin, you have the courage to succeed.”
Linda Smarto is the Program Coordinator of the National Association for Down Syndrome (www.nads.org) which involves training Parent Public Speakers and Self-Advocates to bring DS awareness to the Chicagoland area. She also coordinates the Self-Advocates to volunteer in many fundraisers such as the Buddy Walk, NADS Fashion Show, NADS Magic Show, NADS Bowl-A-Thon, and the NADS Conference. With the medical community as a major focus, the Program’s trained speakers have presented on the subject of Down Syndrome to doctors, nurses, medical students, case managers, social workers, lactation consultants, obstetricians, genetic counselors, pediatricians, paraprofessionals and therapists. In addition to personally presenting, Linda is joined by her daughter Julia (now a trained NADS Self-Advocate).