Mac can always be a director.
07 November 2009
02 November 2009
Baby Steps
I'm so proud of Oliver! Today he walked from his bedroom, through the living room, and to the door that leads into the hallway to the playroom. Last night, he walked from the living room to his bedroom. I have recently started to instill in him the idea that the walker isn't just for exercise or small steps, but rather a way to get from room to room. It takes him a while: partly because it is hard work, and partly because he gets distracted and stops everywhere to touch things. It is cool to watch him, because he seems to happy to be standing and is so curious about the various things he sees on his walk (the piano, his books, stickers, etc.). I think that he is starting to enjoy standing and walking.
After he walked through the living room, I carried him through the hallway to the playroom. I gave him the choice of walking on his parallel bars or playing with his trains. He chose trains, so I set him up halfway across the room from his train table and let him walk to it. Not only did he walk across carpet, but he finished it up with the elusive swing through gate that the therapist at CHOP wants him to use! It was so great to see -- we had high fives all around.
When I told him it was bedtime, there was much crying, but he actually asked for his walker through his tears. Granted he didn't use it when I put him down with it, but I think that was more because he didn't want to leave the playroom and was preoccupied making sure that Mac, too, had to come in for bed than because he couldn't do it or didn't want to walk.
I can't wait to see what he will do next!
After he walked through the living room, I carried him through the hallway to the playroom. I gave him the choice of walking on his parallel bars or playing with his trains. He chose trains, so I set him up halfway across the room from his train table and let him walk to it. Not only did he walk across carpet, but he finished it up with the elusive swing through gate that the therapist at CHOP wants him to use! It was so great to see -- we had high fives all around.
When I told him it was bedtime, there was much crying, but he actually asked for his walker through his tears. Granted he didn't use it when I put him down with it, but I think that was more because he didn't want to leave the playroom and was preoccupied making sure that Mac, too, had to come in for bed than because he couldn't do it or didn't want to walk.
I can't wait to see what he will do next!
28 October 2009
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.
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.
16 October 2009
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.
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.
12 September 2009
Field Trip
It is a well established fact that a field trip to Washington D.C. is an educational experience. I have always enjoyed going down -- I am a huge museum nerd. So when labor day weekend rolled around and Tim suggested taking the kids on a museum trip, we looked into all of the local museums, and also considered D.C. Even though I though D.C. would be a little bit above the kids' heads, we decided to go for the overall fun of a road trip.
So on Saturday we packed the kids into the car and headed down. We actually left on time, stopped at Subway on the way down, and made it in really good time. We had a beautiful (but cheap) hotel, right off of the metro.Unfortunately, there was no pool. Despite the fact that Tim thought there was one when he booked.
So we whisked them out of the disappointment of the hotel to the metro. The kids got to go on their first "underground train" ride, and we went straight to the Air & Space museum. We thought there was a pretty good chance that would be a crowd pleaser. Oli was quiet, and Mac complained. Non-stop. About walking, wanting to leave, and and anything else you can think of. I may get frustrated by Mac, but very rarely am I annoyed. She was, in short, annoying.
Day 2. Actually a lot better. We relaxed in the hotel room and watched an old scooby doo cartoon movie. I had found a starbucks the night before, so I was covered for coffee. The kids played and laughed. Life was good. Fast foward to the metro (okay, except Oliver cried whenever it started to move and Mac asked at every stop if it was our stop). Day two was the American Museum of Natural History. Dinosaur bones -- a no lose exhibit, right? Mmm. sort of. Moderately entertaining. We had to fight for a table for an overpriced lunch. It was tasty, though, and I was pleased to find vegetarian fare. Next to the hall of mammals. Jackpot! Mac loved the hall of mammals, and took over 200 pictures on Tim's iPhone. Reviewing the pictures, it looks like we went on a very blurry safari. Unfortunately, Oli was not so mellow here. He wanted to get out and run around. I can't blame him, but I wasn't about to let him crawl on the floor. So I carried him a lot. It was exhausting.
We left he museum and went to the carousel on the mall. Mac and I were third in line, but we missed out on the really cool sea serpent. Why would they only put one really cool sea serpent in among about thirty plain horses. It seems like a tantrum waiting to happen. Which is was. Mac stood rooted to her spot, screaming, crying, and pointing at the serpent. Finally, she chose a horse and we rode. Again, it was exhausting.
We tried the sculpture garden. No go. We tried the art museum. No go. We tried to walk to the metro. No go. Tim wound up carrying Mac and we made a mad dash to the train, got to the car, ate dinner, and headed home.
So, as always, the trip to D.C. proved educational. Here are some lessons I learned:
1. Mac is not too big to need a stroller. We really need to get the double stroller fixed.
2. 4 1/2 and 2 are too young to appreciate the Smithsonian.
3. If there is no pool, nobody will have quite as much fun.
4. Subway (the sub shop, not the metro) was Mac's favorite part of the trip.
5. I could have saved a lot of time and money by taking the kids to a local Subway.
So on Saturday we packed the kids into the car and headed down. We actually left on time, stopped at Subway on the way down, and made it in really good time. We had a beautiful (but cheap) hotel, right off of the metro.Unfortunately, there was no pool. Despite the fact that Tim thought there was one when he booked.
So we whisked them out of the disappointment of the hotel to the metro. The kids got to go on their first "underground train" ride, and we went straight to the Air & Space museum. We thought there was a pretty good chance that would be a crowd pleaser. Oli was quiet, and Mac complained. Non-stop. About walking, wanting to leave, and and anything else you can think of. I may get frustrated by Mac, but very rarely am I annoyed. She was, in short, annoying.
Day 2. Actually a lot better. We relaxed in the hotel room and watched an old scooby doo cartoon movie. I had found a starbucks the night before, so I was covered for coffee. The kids played and laughed. Life was good. Fast foward to the metro (okay, except Oliver cried whenever it started to move and Mac asked at every stop if it was our stop). Day two was the American Museum of Natural History. Dinosaur bones -- a no lose exhibit, right? Mmm. sort of. Moderately entertaining. We had to fight for a table for an overpriced lunch. It was tasty, though, and I was pleased to find vegetarian fare. Next to the hall of mammals. Jackpot! Mac loved the hall of mammals, and took over 200 pictures on Tim's iPhone. Reviewing the pictures, it looks like we went on a very blurry safari. Unfortunately, Oli was not so mellow here. He wanted to get out and run around. I can't blame him, but I wasn't about to let him crawl on the floor. So I carried him a lot. It was exhausting.
We left he museum and went to the carousel on the mall. Mac and I were third in line, but we missed out on the really cool sea serpent. Why would they only put one really cool sea serpent in among about thirty plain horses. It seems like a tantrum waiting to happen. Which is was. Mac stood rooted to her spot, screaming, crying, and pointing at the serpent. Finally, she chose a horse and we rode. Again, it was exhausting.
We tried the sculpture garden. No go. We tried the art museum. No go. We tried to walk to the metro. No go. Tim wound up carrying Mac and we made a mad dash to the train, got to the car, ate dinner, and headed home.
So, as always, the trip to D.C. proved educational. Here are some lessons I learned:
1. Mac is not too big to need a stroller. We really need to get the double stroller fixed.
2. 4 1/2 and 2 are too young to appreciate the Smithsonian.
3. If there is no pool, nobody will have quite as much fun.
4. Subway (the sub shop, not the metro) was Mac's favorite part of the trip.
5. I could have saved a lot of time and money by taking the kids to a local Subway.
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