Vacation from the Other Side

So what does a family of four with absolutely no free time on their hands do? Take a trip to Disney, of course. Tim had to travel for fall taekwondo nationals, so we booked an extra four days onto the end of his trip, and the kids and I flew down to meet him. When we booked the trip, I don't think we anticipated how crazy our fall was going to be. Tim had no idea that he would be acquiring a second school, and I didn't think that my semester would be so busy. But once the tickets were booked, we had to go. And I'm really glad that we did, because I loove Disney (or Dis-e-ney, as Mac says), no matter how short the trip or busy our schedule.

One thing that was interesting about this trip was that Oli's spina bifida became an external focus. That is, it affected the decisions we made about the trip. At first, it didn't even occur to me that this trip might be a little different. But as I started packing, I realized I would have to choose which braces he would wear. Little ones, because he would be lighter and therefore easier to transport through the airport, or big ones, because checking them in the luggage could result in damage to the braces? I opted for his big braces, because I did not want to take the chance that they would get damaged in the luggage.

While this was the right choice, it also led to complications. First, he was much heavier to carry through security (after I took out my laptop, took off everyone's shoes, and disassembled the double stroller). Next, he set off the metal detector. So we had to step to the side and be wanded. Seriously. They were nice about it, and there was no cavity search involved, but both Oli and I had to be swiped with the wand to make sure that we weren't carrying anything onto the plane. Of course, Mac is walking around us on the dirty airport floor, asking "why?" and not wearing shoes, during the entire process.

After that, it was pretty easy going. We met up with Tim, had delicious dinner, and planned our next day at MGM studios. Towards the end of the day, we were waiting on a pretty long line for the Toy Story ride, and Tim and I were switching off holding Oli. At this point of the day (since we had already done it several times) it occurred to me that most kids Oli's age (and size) would be standing in line with their parents for at least some of the time. At that point, I realized that we actually qualify for disability status, and should be entering through the handicap entrance on the rides.

I had mixed feelings about this realization. Although I am all about embracing Oli's spina bifida, and creating a "new normal" where whatever works for him is our reality, I've never been confronted with fitting him into a public category, or using public resources specific to his condition. I'm not explaining this quite right, since we do use public resources (early intervention) and I do participate in spina bifida events. But it was sort of weird to actually go up to guest services the next day and request and "handicapped" pass. Maybe because the word "handicapped" has such a negative connotation to it, and that isn't how I see Oli? And using that pass lumps him into a category that is defined by negative definitions/stereotypes? Or maybe just because it was a public declaration that he fits into a category other than "normal?" My usual cry of "empowerment" was temporarily sidelined by this inner conflict, of wanting to embrace his differences and at the same time wishing he didn't have to deal with this. And realizing that as he gets older, his differences are going to become more pronounced.

So it was with these mixed feelings that we went to guest relations, explained our situation, and got a sticker that allowed us to use his stroller as a wheelchair. The first ride we went on was Small World, and they had to stop the ride so we could fill an entire boat with people from the "disabled" line. We were a spectacle, which only compounded my ambivalent feelings. But after that ride, we were able to get on everything the same way everyone else did, but by using a different queue. It actually made our second day a lot easier. We did get to skip to the front of some lines (!), but even when we didn't, we got to wheel Oli through the line in his stroller, rather than taking him out and carrying him through the line. I'm sure this saved him some frustration, as well as my back.

On the way back from Florida, I used my lessons learned from the flight to Florida and took Oli's braces off and put them through x-ray. A pain, yes, but better than getting wanded. Although I don't know what we will do when Oli is older, and is perhaps walking through security using a walker or crutches. Will he need to get wanded every time? Although I see the necessity, it is also sort of degrading. Our trip was a lot of fun, but it was also an eye opener to the fact that no matter how much we embrace Oli's differences and accept them as our normal, operating in the "real world" may not always be a normal experience.

Big News on the Little Guy

Oliver has taken his first steps! It is absolutely amazing to see.

We took him to CHOP for a clinic appointment about two weeks ago. It is funny how things have changed. I used to think that the PT was useless, and waited breathlessly to hear what neuro and orthopedics had to say. This time, I couldn't wait to get to PT so that I could see what she had to say about using his walker and using a "swing through gait." Oli got his walker in July, but cried every time I put him near it until September. Finally, with the help of his PT (especially his outpatient PT at the 'baby gym'), he started to stand with it. But neither his Early Intervention (EI) PT nor his outpatient PT could figure out how to get him to do the "swing through gait" that CHOP recommended (the swing through gait is just getting Oli to boost himself up on the walker using his arms and then sliding/swinging both feet through at the same time). Our EI PT doesn't agree with it at all, and our outpatient PT was not sold, either. So I was anxious to see what the CHOP PT had to say when I asked about these challenges.

She more than delivered, and by the time we left, Oli had taken a few steps with her help. Excellent! When we went to outpatient PT the next day, he actually took a few steps on his own. It was the most exciting thing I have ever seen. He doesn't exactly swing through yet -- right now he sort of twists his hips and moves his feet forward as he does it. Whatever! I am so excited that he is doing it himself that he can do whatever he wants.

Our EI PT brought Oli a set of parallel bars made of PVC piping that was donated by another family. Oli can walk down the whole length of the bars. It takes him a little while, and he wants to get down (which means unlocking his braces and letting him crawl) as soon as he is done, but it is a great first start. He has walked a few steps almost every day for the past two weeks and it is amazing!

Now I have to learn how to strike a balance between encouraging him to walk and letting him set his own pace. We had his 6 month EI evaluation today, during which we assess him in terms of previously set goals, and create new goals based on where he is. He has exceeded many of his old goals. I would never have believed 6 months ago that he might be walking now. His new goal (to be reevaluated in April) is to be using his walker to move from room to room. With hard work and some divine intervention, I have faith that he will get there.