7/05/2006

Taking Care of Rick, Part II

There are two things that I will forever associate with Rick: The Boston Marathon, and Walden Pond. Rick lives to race. That's what he does. It's who he is. He and his father participate in at least 52 races a year, I think. That number is just off the top of my head, but they race at least once almost every weekend, sometimes twice. Some of the races they run are short, like the occasional 5 or 10k. Some of them are longer, like the 6 Iron Man Triathlons they have competed in around the world. Again, that number is just the one I used when I was working for him. It wouldn't surprise me if they have now been in far more than just 6. At this point, most people ask me, "How do they do triathlons?" Well, Dick pushes Rick in the running part, of course, and they have a special bike that they can strap Rick into for the biking section. For the swim, Dick puts Rick in an inflatable raft, which has a line connected to a vest that Dick wears while he swims, allowing Dick to tow Rick. Yes, I've seen videos of it, and it's just as amazing as you think it is. But the Boston Marathon is their race. Rick actually graduated from Boston University, and so feels like there are parts of the race that belong to him, like the road through Kenmore Square where I first saw him. Ironically, during the 2+ years I worked for Rick, I only worked about half a dozen races. I took care of him mostly on weekdays, and the races, of course, are on the weekends. But I did get to work the morning of the Boston Marathon. What a trip! Rick and Dick were getting interviewed at every turn, and everybody knew who they were. They were also the very first people on the starting line. The wheelchairs start first, of course, and when Dick pushed Rick out to the big yellow line on the road, a huge cry went up from the who knows how many thousands of people who were waiting to start the race. Like I said, everybody knows them. Years later, when I was watching the marathon on TV, I waited to see Rick and Dick cross the finish line. After they crossed, the media coverage of the race stopped. I realized that the television crews were waiting to cut the feed until the Hoyts had finished. After all, you can't have the Boston Marathon without the Hoyts. It will forever be their race. (By the way, note the time on the clock behind them in the picture. That's a fairly accurate reflection of Team Hoyt's Marathon time. Pretty speedy.) But like I said, my time spent with Rick was rarely spent at a race, strange as that may sound. A large part of my time with Rick was spent at Waldon Pond. Rick loves to swim, surprisingly enough. And he can do it, sort of. He and I would go to the pool at BU, which had lift access to the lanes. I would get in with him, tread water next to him, then flip him over, face down in the water, for 5 seconds while he flailed every limb, propelling himself about 3 feet. Then I would flip him back, let him breathe, and wait for his signal that he was ready to be flipped again. If and when he got too cold or too tired to swim anymore, I would then tow him, one hand wrapped around his chest, the other arm swimming the side stroke, his head resting on my shoulder, as long as he wanted to be towed. We did this a lot, and it was a work out for both of us. Rick had a goal that summer. His goal was to swim across Walden Pond. Walden is not a small pond, but it's not tremendously wide if you cut straight across it. Still, it seemed a rather formidable goal, but I came to understand that if Rick wanted you to do something for him, you did it. We spent countless hours in the BU pool, working up both of our endurance. And once the weather got warm enough, we headed out to the pond. The first time we tried it, I thought we were both going to drown. The water was colder than we expected, and Rick practically seized, he was shivering so hard. I was cold, too, and got exhausted well before we reached the other side of the pond. Bad news when you are responsible for somebody else's safety. A lifeguard saw me drag him out of the pond, and came rushing over, thinking Rick was a drowning victim. Well, not yet, I thought, when the lifeguard quickly asked me if Rick had drowned. But another trip like that, and he will definitely be fish food! We were both completely spent, and Rick was dangerously cold, too cold to go back in the water for the return trip to the original shore. I started to pick him up to carry him back around the shore of the pond, when that blessed lifeguard volunteered to do it for me. He carried Rick back to his chair, and I slowly pushed him back to his van, convinced that this would be the end of the whole affair. Silly me. It would take a lot more than cold water and a tired PCA to make Rick quit. Of course you know by now that we made it across that pond, both across and back, several times. Rick pushed us both beyond what I thought either one of us was capable of, time and time again. That's another thing Rick does. He pushes people beyond what they think their limits are, forcing them to find the parts of themselves that will give a little more, even when they think that surely they are empty. Rick will always ask you for everything you've got. After all, it's no less than he asks of himself.

9 Comments:

Anonymous mark iv said...

Heather, thanks for this. What an amazing experience.

7/05/2006 10:40:00 PM  
Anonymous Maren said...

I think I first read about them from one of your posts ages ago. Very inspiring. I am enjoying reading about your experiences. Thank you for sharing them.

7/06/2006 09:17:00 AM  
Blogger Cheryl said...

I'm anxious to hear more! Thank you so much for sharing all of this with us. Rick sounds amazing --and so does his dad...

7/06/2006 09:35:00 AM  
Blogger Lisa M. said...

Heather, I would like to know about the ways Rick communicates. Ethan is starting to develop little tell tell things that indicate he likes or doesn't like certain things. Communication is going to key, I think.

Ethan also LOVES and I mean L O V E S the water. He is like alka seltzer you add water, and there is all his fizz and bubbles.

Its wonderful to read about Rick, especially from your standpoint. I appreciate you sharing this with us.

I love limitless drive!

It gives me hope!

7/06/2006 11:12:00 AM  
Blogger Heather O. said...

Lisa M.,

Communication with Rick can be tricky. He has a computer, which he operates with a head switch. He can type using a program that scans through letters, and then he hits the head switch to click on the letter he wants. He has worked with a Speech Pathologist at Children's Hospital for years on his augmentative communication devices.

Of course, the computer is too slow for everyday conversation. I ask him, "Do you want to say something?", and he nods yes. Then I go through the alphabet in vowel groups, and he nods on which vowel group he wants. Then I go through the letters in that group, and we spell things out that way.

For example, if he wanted to say, 'Make me a sandwich', I would say to him, "A,E,I" and he would nod on I. Then I would say, "Letter i, Word I, j,k,l,m" and he would nod on M. Then we would start over again at "A, E, I, O, U..." etc. Eventually we would spell out 'Make me a sandwich'. It's not quite as slow as it sounds, because once I would get the first letter, I could start guessing words and phrases, which speeds up the process. But Rick is a notoriously lousy speller, which means occasionally he would misspell things, and, true Bostonian that he is, he would also often leave out the 'r'!

For Ethan, there are a lot of options. Consistent yes/no responses are the very first step in building an augmentative communication system, and it can be elaborate or as simple as you want. I knew a woman who just had a sheet of paper with the alphabet on it, and she would drop it to the ground, and point to it with her foot, the only part of her body she could control consistently. And there are thousands of augmentative devices that are more elaborate on the market. Success tends to be higher when you combine a couple of different systems, like Rick has done.

7/06/2006 11:30:00 AM  
Blogger Lisa M. said...

Heather:

We have started a little bit with augmentive devices, and I have been thrilled with what they are starting to do. We are working on a communication board that has buttons with pre programed says on it. I am hungery, I want to lay down. I feel like taking a bath.

Ethan isn't cognitive enough yet, to really work with this in a significant way, but... it is coming.

I have decided to concentrate on two area's with full throttle intent with Ethan, communication and eating. I have concentrated on mostly PT tuff up until now, but I think eating and communication are going to be vital, vital, vital.

Its funny how your perspective changes overtime.

I really do appreciate your input! Now, if I could just come and live with you for the summer so you can help me teach E to eat, that would BE FANTASTIC.

*grin*

I really do appreciate your thoughts, and blogs, and the opprotunity of knowing you a little bit.

7/06/2006 11:37:00 PM  
Blogger Heather O. said...

Lisa-

Eating can be tricky, too, especially if E is tactile defensive in any way, or has reflux. Just keep working at it, and keep doing all the good things I know you are doing!

7/07/2006 12:24:00 AM  
Blogger mullingandmusing said...

I think I saw a story on these people. So amazing! Thank you for sharing this!

7/07/2006 12:34:00 AM  
Blogger The Daring One said...

Thank you for pointing this out on my site. I am just in awe of you all. Your telling is amazing.

7/13/2006 04:04:00 PM  

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