Friday, September 25, 2015

An Open Letter to the Parents Who Glared at Our Family Taking a Second Ride at Disneyland

                Hi, we are the family with the cute son wearing a neckerchief, that you watched go by twice at Ariel’s Undersea Adventure and Splash Mountain.  I watched you escort your darling little girl off the ride. She seemed to be somewhere between three and five and very good natured. She heard the attendant tell us we could stay on the ride and naturally, thought he was speaking to her, so she scurried to get back in the car.

I am sorry if it made it difficult that my child got to ride twice and yours did not. If my son could speak to ask me why others can do the things he cannot (not that I have a good answer), I would be thrilled. But he cannot speak. Nor can he walk by himself, feed himself or use his hands for manipulating things like a pencil or spoon.  He does not play with toys, because he can’t use his hands well enough to make it anything but a tremendously frustrating experience. He is liked by his peers and by adults, but since he cannot talk with them, or play the same way, he doesn’t have real buddies. He is eleven and cannot always predict/control his toileting needs, so I still change his diapers. In public restrooms, I usually have to put him on the floor to do that. Also, since he has cortical visual impairment, he has moving holes in his vision. There is no knowing when or how he sees something in its entirety.

 Sam comprehends what is said to and around him, and will answer yes/no or multiple choice questions. (That is not the same as saying what one thinks or generating questions.) He communicates with body language and two or three signs.  For somebody who cannot move himself without assistance, he is very active and fun loving.  I would pay everything I have to watch him scurry to climb into a ride or even ask me about it.

This is the magic of Disneyland for him and for us:  During most of those hours in the park, he makes up for all of the tree climbing, bike riding, scootering, skateboarding, walking, running, touching, playing pretend and holding things that does not happen during the rest of his daily life. Believe me; he would like to do every one of those things. He is quite self-conscious that he is different. He is shy about using his voice generating software in front of strangers. He gets embarrassed when people ask about his g-tube feeding, as some do when they see us in restaurants.
At Disneyland, he gets to forget his differences and inabilities. At Disneyland, everyone is riding and shouting and laughing like him.  Besides being thrown all around at outrageous speeds and getting splashed and seeing/hearing creatures talk, he connects with the characters in ways that make up for not playing pretend with others. He laughs like crazy and communicates his joy in motion the best he can. So yes, we ask to ride more than once on most attractions and sometimes we get to. Yes, we try to call the characters’ attention to him to shake hands and be on his best visual side.

We deeply appreciate that there is a place where this magic is possible for him. We try to let him absorb as much of it as possible for those three days every couple of years. If you want to trade that speedy line time and the extra rides at Disneyland for your child’s ability to run up and hug you, or ask you questions, there is not a parent of a disabled child who would not do it in a heartbeat. 

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