Disney World with Autism

I’ve been meaning to write this for quite some time.

We did well in Disney World and it was due to a few things:

1. For every child with autism, you need at least one parent, grandparent, aunt, etc. to help corral or monitor where each child is and what they are doing.

2. Get a letter from your child’s doctor stipulating that he or she has autism. As soon as you enter the park, go to guest services and let them know that you need a Guest Pass for your child. This pass allows your child to go into the express/fast pass line or the disability line for nearly all of the rides. The pass allows for five other guests to ride the ride with the person who has the disability. We had two letters and two passes which allowed us to have as many as twelve people enter the express/fast pass line. The child with the disability has to be with the group entering the fast pass lane. Disney cast members will check for the Guest pass.

At first we didn’t think we would need the Guest pass because the boys are pretty good about being patient. We quickly discovered that Peter needed constant stimulation and once we were off a ride he wanted to “do again” so we had to keep him moving.

3. Use some kind of tracking device. I put a mini backpack on each boy that also had a tether or “leash.” I hate leashes on kids but I would rather have a leash and my child than have one of them terrified, wandering around the park and with little ability to communicate to others.

We only had one person comment and that was to my father-in-law (thank goodness, I probably would have displayed a less Christian response, I’m afraid). My father-in-law shrugged it off and kept going. The woman, of course, didn’t know the boys were autistic and commented to my father-in-law that we could get in trouble with the law and park authorities for “leashing” the boys. Bah! but I would have gotten mad anyway.

4. Pin some kind of identifier to their shirt. Some parents recommend writing their cell phone number and name on the child’s arm but Nathan is allergic to Sharpie/ permanent marker (it causes his skin to raise up in welts) so this wasn’t an option for us.

5. Make sure you stop to eat and get drinks frequently. We tried to make sure that hunger or thirst didn’t cause a meltdown.

6. Nathan was still small enough for one of the large toddler strollers so we alternated renting a double stroller with my sister-in-law and brother-in-law whose daughter is just a little older than Nathan. She and Nathan shared the double stroller but, since they a best friends, they loved it.

Since Nathan is a slow walker (he’s still slow from being a late walker) he has a hard time keeping up with a group and tires more easily. The stroller worked out for him.

7. Don’t push your child. Remember, Disney World is for them as much as you. Enjoy taking the time to re-ride rides they really liked.

8. We bought one of the unofficial guides to Disney World (I gave my copy away but I’ll look for a copy in the bookstore and let you know which one it was). The authors included plans for tackling the park based on a wide variety of scenarios. For example, if you are a couple with young kids, they assume you’ll get there at ten the morning. They’ll tell you to ride Dumbo first, etc.

This book also gave a rating system for each ride so we knew what would work with each child and what wouldn’t. This was great! We immediately knew what rides we had to say “no” to because of loud noises or darkness, etc. There were a couple of things I had to sit out with one of the boys or leave early but overall they rode a lot of the rides.

My only regret was letting my husband take the boys on the Tower of Terror. I recalled that it was scary, my husband didn’t remember it being that bad. I stayed behind because I hated it and remembered feeling like I was going to fly out of the seat (the last time I rode it, I weighed 115 pounds and at five feet I don’t fit the “average” safety harness). As soon as he and the kids walked off, I went after them to get the boys but I was too late–they had entered the fast pass/disability line and I couldn’t get in.

Peter got off the ride and acted as if he had just taken a walk down the sidewalk–absolutely no reaction. Nathan, on the other hand, came off terrified, he cried and cried. Of course, my husband’s reaction to the ride with kids was completely different. He realized, too late, that from a kids perspective, the ride could be terrifying. So, next time, no Tower of Terror.

Other than that, Disney World was a blast and the kids had a ball. We are planning to take them again either this summer or next.

Genetic Link for Autism?

I have strongly felt that there was a genetic link for autism but the focus on immunizations seemed to take the focus off of this kind of research. Today, U.S. News and World Report is reporting that scientists have found that an error on a gene may be related to autism.

Scientists studied the DNA of familys of those with autism, those with autism and then a control group of people without autism. They found a significant difference.

In our family alone we have two with autism and one with ADHD. My husband is suspected of having had PDD-NOS as a child. We have a niece on the autism spectrum as well. I have no doubt that there is a genetic link–the question we face now is what are we going to do about it?