This past spring break we went to Disneyland for a few days. It was a very magical experience as you would expect Disney to be. We stopped by the customer service desk on our first day to request a special needs pass for our daughter who has Down syndrome. We thought it would be enough to simply state that she has Trisomy 21 and move on. Instead, they expected us to explain her typical behavior and why she needed the pass before granting it. My response, “She will touch everyone, she will lick someone’s leg, she will run out of line and away from us, she will hit someone, hug someone, take someone’s cell phone and put her hand up someone’s skirt. This will all happen within the first three minutes of waiting in line.”
With the special needs pass we avoided all that was described and more.
Thank you, Disney.
Our daughter is barely six years old and has been living with us now for two years. Before that, we believe she had good care but it was not the same as having a family. Whether it is her background or her cognitive disabilities, she has a tendency to be highly unpredictable. At home she may strip off her clothes and drink out of the cat’s water dish, find a meat thermometer and shove it into the grounding hole of the electrical outlet or put the dog in a headlock. She has also been known to play quietly for hours with a few dolls and a cardboard box. So, very unpredictable.
Out in public she has been known to, without warning, hit, lick, hug or yell at another child or adult. If she sees food she will fight for it because she expects people to share. When we are in public we never leave her side, but that doesn’t mean that we can predict or prevent her from lunging at someone at any given time. She may also spend most of the day out in the wild without a single incident. Did I mention she’s unpredictable?
And so, the only thing that we can do is apologize, encourage her to apologize and move on. Some mistakenly believe that individuals with Down syndrome are happy all of the time. As a result, they are surprised when she behaves in an “unhappy” way. Add this to seeing an Asian child with no Asian parents in sight can lead to further confusion. Acknowledging that assumptions may be wrong can be uncomfortable. I do my best to be kind, to educate, and then move on because I do not have the emotional energy to carry other people’s reactions.
Just because we look calm when she takes down an unsuspecting toddler does not mean that we do not want improvement. Rather, we have learned that the bigger the reaction from us, the more she will think that our reaction was interesting. In other words, if we freak out because she hit someone, she will do it again. If our reaction is neutral she is less likely to repeat it. This technique is also used at school.
Kids with Down syndrome often reach developmental milestones at a slower rate than their peers. Which means while some kids learned at three or four years old not to hit, she’s still learning and learning and learning. I also believe as her language development continues to improve and she can use her words to express herself, there will be a time when this will no longer be an issue.
In the meantime, I’m looking for a bit of compassion and understanding for my daughter and for kids like her. She is my absolute favorite human in the world. She also exhausts me in ways my typical kids never will. I aim for constant vigilance but grant myself instant forgiveness if I air-grab for her arm as she bolts out of reach. Keeping a sense of humor is also helpful.
And please remember that just because our family chose to adopt a child with special needs does not mean that we are saints. We are just flawed people who are doing the best that we can. Giving me and other parents like me a nod and a smile even if you don’t completely understand makes all the difference.