Having a Child With Down Syndrome, Part XCVI: The Disney Machine

Copyright © 2016 Stephen Hawley, all rights reserved.


In September/October, E and I started planning a vacation for February vacation. It was a trip to a Disneyworld resort with a Park Hopper pass for 3 days and then a visit to my folks, who are in Sarasota. We did a lot of ahead planning and were excited since a lot more of the parks were going to be accessible to both our kids. E made a PowerPoint presentation to help choose what attractions we would make sure we went to and which parks we would go to for our stay.

The first day was Epcot and we walked close to 7 miles. Alice did admirably well and we finished up with dinner in ‘Morocco’ and Alice did some belly dancing.


The second day was the Magic Kingdom, but we ended up renting a wheelchair because Alice was clearly sore from the day before.

Alice and I had some fun playing with hats in one store:

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Stuart had picked out a lot of roller coasters. Oddly enough, I think Alice enjoyed them more. The jury is still out.

Stuart was very vocal about what he wanted to do, Alice less so so we had to fill in the blanks. E put the 3:00PM parade on the schedule and we were able to get a good spot thanks to the wheelchair. A number of the cast members saw Alice and waved to her directly. For example, Alice yelled to Merida who flexed and waved:


I was standing behind Alice, so the intent is pretty clear. It was very sweet.

The final day, we went to Hollywood Studios and Alice was clearly off from the start. I stopped with her and took off her AFO and saw that she had a pretty big sore on the instep, so we walked back to the wheelchair rental spot and I found that you can get a comped rental by approaching them with a crying child with outwardly obvious disabilities. Alice really needed the chair, though.

We finished the day with a late character dinner and let me say that Alice had them wrapped around her little finger.

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The cast was very nice to Alice and Alice reciprocated. E and I both spoke to one of the handlers to make it clear how nice it was to have them taking such good care of Alice. At one point during the day Alice said that she wanted to be a Disney cast member when she grew up. I don’t know how that would work out, but who knows?


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Copyright © 2016 Stephen Hawley, all rights reserved.

Usually, when I write an article here, I have a goal or a theme. I write to that goal and try to show what I’ve learned or where I’m stumped. I do this as a diary for myself and as a reference for others. It is a window into my life and Alice’s life for the rest of the world to see and to help me reflect.

Most of the time, I have no idea what I’m doing. One of my previous bosses (hey, Lou) complimented me on my ability to make good, solid decisions. I appreciate that, but at the same time it comes with a rigidity that is not always appropriate. So be it: I make mistakes. Who doesn’t?

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We’re taking a vacation soon. Hooray! It’s been a while and I started planning this one in October. This is a rarity because usually I don’t take vacations until I’m solidly in a crisis and am beyond the point of needing to get away for a while. I think I had more time to think about it. We had some money saved and considered going on a Disney cruise. Mind you, this is a scary thing to be on a ship with Alice who has impulse control issues, but I thought it would be nice and the Disney™ Brand offers a lot for both kids. In looking at the overall cost, it looked like we’d be better off going to a resort instead with Park Hopper passes and spend the rest of the time at my dad’s place because kids and grandparents go together like assault and battery.

As we got closer to zero hour, E took the reins and prepared a PowerPoint presentation of all the major attractions that would be open in each of the parks and I took notes as the kids took it all in. She’s done a great job and has spent a lot of time on the phone making sure that all the i’s have been dotted. She’s good that way.

However, there’s a down side to this. Alice perseverates. This means that ever since the big reveal, Alice talks non-stop about the trip and says the same things again and again.

“We going to Disney and we pack tomorrow.”

“No, Alice, we’re not going for a month, remember?”

“We’re going to Disney?”

“Yes, Alice, but not for a month.”

“A month?”

“Yes, Alice, in a month. I understand that you’re excited. It’s OK to be excited, but it’s not OK to say the same things again and again.”

We put the travel dates on the calendar on the fridge. We pointed her to that. It helps. A little.

Today, the grand total of her talking about when we would be packing: 10 times up until dinner. Think about that for a minute. I see her for about an hour in the morning and 3 hours before dinner. That’s 10 times in 4 hours, or every 24 minutes we had to have the same conversation.

We try to give her different ways to express her excitement. It helps. A little. She has taken to letting out a really high pitched “squeeeee!”

I’m still not sure what to expect for this trip. I’m very happy because this is the first time that we’ve gone to the park when we didn’t need a stroller nor did we need a sticker that says “stroller equivalent to a wheelchair”.


which is fantastic. However, both kids are in totally different places in terms of interests, motivation, and motion.

I expect for the most part to be doing a lot of walking, a lot of standing, and a lot of intervention between the kids.


Having a Child With Down Syndrome, Part XCV: Band Wrap Up

Copyright © 2016 Stephen Hawley, all rights reserved.

Band for Alice was an experiment. We had her signed up and sought out a special instrument and then in the fall were told that she couldn’t take band because it didn’t fit in her schedule. We horse traded and managed to get 1/2 a year of band in exchange for losing 1/2 a year of physical education. It’s not an ideal exchange, but that’s what makes it a compromise.

In speaking with her band director when I ran into her at a store, she told me that Alice had asked to conduct one day and the band director, to her credit, said sure. I was told that she did a wonderful job. I did not know that she had shot video of it.

A couple things to note:

  • she starts off the group perfectly
  • she cues the trumpets at the right time
  • she cuts off at the end
  • her peers applaud for her

The last is the part that I’m especially happy about. As I’ve mentioned in the past, she is with a great group of kids who honestly like her for who she is and that is something that will continue to lift her up in the future.

She didn’t really progress on the instrument, but I think she got a lot out of the class and I think the video is pretty clear on that point. If you’re looking for a reason as to why inclusion is important, it’s right here: everyone benefits from inclusion done well.