Disney World survived us!
We made it there and back with the help of a number of individuals and organizations coming together: Wings for Autism of the Charles River Center, ASD Vacations and Autism on the Seas. This trip was a first for many and it made the news. Hope, Rhema and I are in the video below briefly and there’s a great shot of the back of my head as I’m trying to get our bags checked. (Ha).
It was both and. Our trip to Disney. It was really fun and good and really hard and challenging. All worth it.
And already I find myself letting go of the hard and treasuring in my heart’s memory the GOOD stuff.
For families thinking of going to Disney, I wanted to briefly share our biggest challenges: waiting and food. Even though we went during one of the less busy times of year, it was still very crowded and the lines were long. Rhema has only one mission in amusement parks and that is to ride rides – as many as possible, over and over. She has little patience for shows, exhibits, characters, parades, etc. We used the FastPass system to book three rides in advance each day, but these were all spaced an hour or two apart. We also used the Disability Access Services (DAS) card. We could take the card to a particular ride and get assigned a time to return (usually an hour later) so we didn’t have to physically stand in line. We could only use the DAS card for one ride at a time. So you can imagine all the planning and juggling that was needed to manage the waiting and keep things moving.
Rhema constantly wanted to bolt. The second we took hands off her she would take off, and on a number of occasions we almost lost her. So there was a lot of me or Brandon holding her and a lot of her resisting. This made the waiting tedious. But Rhema amazed me with how well she waited. She had to wait so much and she was flexible when she couldn’t get on a ride. There were times when I was sure she was going to lose her stuffing but she would keep it together. I was so very proud of her.
At Magic Kingdom, we met up with Lyah who served as 1:1 respite for Rhema. She used to work at Disney and now teaches kids with autism. She was a wonderful support to us. We’d corresponded a good deal in the past month, and she immediately seemed to understand what Rhema needed and how to help. She helped us maneuver the park and stayed with Rhema while Brandon went to sign us up for rides. Whenever Rhema bolted Lyah was right there. Thank you, Lyah!
The food was insanely good! The food was insanely expensive! Rhema is a picky eater and basically refused to eat. Almost every insanely expensive plate of food put in front of her she pushed away. I think she’s only person to go to Disney and actually lose weight (wish I could say the same!) Hope is allergic to nuts, wheat, dairy, eggs and soy. Everywhere we went they were very accommodating to Hope’s needs. The challenge came in trying to find a place that served food Rhema would eat (many a meltdown occurs in restaurants because she’s frustrated by the food) and that was safe for Hope and that fit into our Disney dining plan and that didn’t have a long wait.
It was a comfort and relief to travel with the group of 21 Magic for Autism families. The heavy weight of worry I usually feel when we’re traveling (or when we’re in public places in general) was lifted. On the plane, parents periodically checked in with other parents: “How you doing?” or “How’s [Ben] or [Sarah] doing?”
On the trip home, one boy had a particularly difficult time getting through the security check point with his mother. Even though TSA had set up a separate line for our group and tried to expedite the process, I think the crowds and confusion and noise and unfamiliar was just too much for him. I saw his mother was in tears and so did some of the others. Instantly we left our own precarious situations – our children/families in the line – and went to this mother to lay a hand on her shoulder, to encourage her son, to see if we could do anything to help, to even just a shed a tear with her. Because we got it. We so got it, because each of us has been there and we needed her to know more than anything that she was not alone.
My friend Andrea wrote something years ago that I’ve never forgotten:
“All of us had made similar choices, seen beauty in the same light, endured related pangs, been patient for healing, and bear the same badge with pride. Without much explicit sharing or rolling up of any sleeves, we knew each other’s life stories–in large part … a sisterhood. Women are amazing creatures. And adversity is an amazing bonding agent. Autism is like Krazy Glue.
Autism mums can be a diverse lot. Some are angry, some are militant, some are bitter, some depressed.
And yet, some glow.”
The ones that glow – these are the women with whom I traveled.
I am excited to share stories from our trip. More to come…