A friend, the single mother of an autistic son, posted the Big Reveal of her son’s birthday present on Facebook. There was a t-shirt, there was the themed toy… They were going to Disney! And when the camera panned to his face, it was a determined ‘oh no!’ shaking of his head. Change was in the air, and it wasn’t going to come easily.
Those reading this blog who have differently-abled children, can well relate to this. Who among you has given the special child in your life a trip or experience that most children would delight in, only to have to coax, encourage and push the child into that activity? And then, once there, who has had their hearts sink as you watch him or her fall apart or withdrew into their own worlds?
Happily, in this case, the trip went well due to some upfront planning. My friend, active in her local autism chapter, had contacted the Mass Port office at Logan Airport, who worked with her and JetBlue to schedule a dry run of what would happen on flight day. Her family showed up at a time the airport wasn’t crowded, and lined up to pretend to go through the check in process. They were escorted through security (and were greeted by very friendly TSA agents), and then they went to a gate where an empty plane was waiting. Her son was shown how to find his seat, how to buckle in, and was told what would happen when the plane took off. He even got to see the cockpit. It was a fantastic example of advocacy, autism awareness and community support can rally around a family.
And even better, for the next few days leading up to the big trip, her son was excited, not frightened. Once at Disney, the entire family, son included, had a magical time.
Ten years ago, a friend with an autistic daughter was relating the story of their Disney trip. My friend was a huge advocate and had worked ahead of time to secure the special disabilities pass to bypass lines. However, once there, as she used her pass, she and her daughter received dirty looks and heard many a muttering from lots of adults who was waiting in the long lines. When her daughter had her meltdowns, which was frequently, she got even more looks and overheard lots of comments about ‘parents who can’t control their kids.’ My friend, being a well-educated New Yorker, promptly turned around and calmly told the annoyed adults that her daughter was autistic, and she was terribly sorry if her disability was ruining their day. Once back at home, she immediately printed up small cards that she carried going forward, that stated that her daughter had autism and could not control herself in certain situations. She handed them out frequently: at the supermarket, at child-friendly events, at the county fair.
Some disabilities are obvious. Others are not. For parents of kids on the autism spectrum, life can be tough. Their beautiful children don’t have wheelchairs, hearing aids, crutches, Tourette’s. Their disability is largely hidden at first glance. They cling a little closer, rock a little, melt down easily. And their parents are often judged, much as my friend was, as bad or indifferent mothers and fathers who spoil or can’t control their child.
In May 2013, the New York Post broke a story about wealthy Manhattan moms who were ‘renting’ a disabled child to escort their families on their perfect trips to Disney. They too, could cut the line! What a bright, shiny future their flawless families have. What wonderful lessons in humanity that they are teaching their perfect children. When interviewed, one mother said there was absolutely nothing wrong with this; they were giving employment to the handicapped. As the New York Post wrote, they are the ‘1 percenters who are 100 percent despicable.’
We all know someone who has a differently-abled child. Every child is special, and every child is a gift… but unlike the wealthy Manhattanites, we know that having children with special needs, is not a joyride around Disney.
Autism awareness has come a long way, but there is still room for improvements. I’m heartened by stories of community support, such as was found at Logan Airport last month, and am looking forward to a future where compassion, not judgment, rules.