Monday, August 31, 2015

Dusty's Trail: Summit of Borneo

Dusty's Trail: Summit of Borneo

Cath Jayasuriya thought to herself, "I don't want to sit around and wait for a cure. Let's do something positive. Let's do fun events." So, in honor of her son, Dusty, she created Coalition Duchenne to raise global awareness for Duchenne Muscular Dystrophy.

In 2011, Coalition Duchenne initiated an expedition to climb Mount Kinabalu in Sabah, Borneo, Malaysia. Cath was raised in Sabah, home of the Kadazan-Dusun people, for whom Mount Kinabalu represents their "symbolic, cultural icon," the mythical dwelling place of their beloved ancestral spirits. In 2012, for Coalition Duchenne's second annual Expedition Mount Kinabalu, a film crew documented the journey. The result is the lovely, award-winning documentary, Dusty's Trail: Summit of Borneo, which is now available on DVD and Video on Demand. (They did not pay me to say that. They asked really nicely.)

Click on the picture above to see a 3-minute trailer of the movie.

"Duchenne not only breaks down the muscles of our sons, but it breaks the hearts of our families. These boys and many more are supported each step we take up that mountain."


Watch this sweet, gentle-spirited, and uplifting movie. Buy a DVD or two. Donate a copy to your local library if you want. Raise awareness, raise funds for research, take your next step up the mountain that represents a cure. 

Friday, August 28, 2015

Making Allies

Research confirms something that we all know intuitively to be true: if you understand a thing, you are much less likely to be a jerk about it. People can be great friends to their disabled peers when they understand some basic facts about their peer's disability. People who don't know what to think or how to behave are the ones who bully and pick on, ignore or tease. Our school understands this well and uses many pro-social and anti-bullying techniques with the kids. I believe that this school-wide teaching focus positively affects the adult members of the school as well as the children. Bearing these things in mind, I make a point to provide a little education about Duchenne to the people Rain sees at school every day.

Educating the Adults

Every year we schedule an introductory 504 Plan meeting with the whole team of teachers (including "specials"--art, music, and especially PE), paraprofessionals, the 504 coordinator (who is also the school counselor), and the Special Eduction director before the first day of school. I treat the 504 Plan meeting exactly the same way that I would treat an IEP meeting. Functionally, in our school, in our district, for Rain at this age, there seems to be no difference between how the 504 works as opposed to the IEP. I figure that if we keep getting the same good results, there's no need to preference one law's acronym over the other. Our district has been great about providing paraprofessional, OT, PT, Speech, and Technology related services under a 504 Plan. I understand that not every district has funding for these related services under the 504 law, which, in such a district, means that a student who needs a "related service" automatically falls into IEP territory. Read The Everyday Guide to Special Education Law by Randy Chapman (remember to buy it through ShopforOurSons.org) and check out Wrightslaw online for a really detailed discussion.

At our meeting, we go over Rain's 504 plan in detail and I make sure to provide every member of the team with my business card and contact information. I take lots of notes and I make sure to get on paper the names, positions, and contact information for everyone at the meeting. I have already donated a copy of Education Matters and The Psychology of Duchenne Muscular Dystrophy to the school and I carry another copy with me in Rain's 504 folder--I make sure that I mention them as valuable resources and that I am happy to provide another copy to anyone who cares to ask for it. I always do a quick-and-dirty explanation of Duchenne and mention PPMD's website. I try to make sure that I mention something that Rain is good at or something that I particularly enjoy about him. I always bring something sweet to eat together as we are meeting (this time it was homemade zucchini bread). After the meeting, I made a point to follow up with a thank you email that included a favorite picture of Rain doing something fun and active. I always give a mid-year/Christmas present and thank you card to every teacher and para and administrator who works with Rain (five-dollar coffee-shop gift cards seem to go over well).

Educating the Children

Every year I give a little talk and demonstration to Rain's classmates. (Here is Kindergarten. Here is First Grade.) I have not varied it much. Essentially, I want Rain's classmates to understand three things:

1. What Duchenne means
2. Wheelchair etiquette
3. Rain is really fun and everyone should play with him a lot.

This year, for Second Grade, I gave the kids a little speech that went something like this:

"Hello Second Graders. My name is Ivy Scherbarth; you may call me Mrs. Scherbarth. I'm Rain's mom and I'm here today to tell you a little bit about Rain.

"You all probably already know that there are lots of things that make us the same as other people and there are other things that make us unique and different from other people. This is true for everybody. Some things that make us the same--well, you're all Second Graders. You're all in Mrs. R's class here at this Elementary School. We all live in Colorado. We all breathe air. (Laughs! I love Second Graders' sense of humor.)

"Some things that make us different, right?-- Maybe I have a different hairstyle from my friend. Maybe I speak a different language at home. Maybe I have a pet iguana. Maybe my favorite color is orange. (Nods of recognition. Big eyes, thinking about pet iguanas.)

"Well, one thing that makes Rain a bit different is that he has a condition called Duchenne Muscular Dystrophy. It is something that he was born with and it is just one part of who Rain is. Duchenne is a condition of the muscles which means that, unlike most of us who get stronger as we get bigger and older and exercise more, Rain's muscles actually do the opposite: they get weaker as Rain gets older. The world can feel pretty heavy to Rain and sometimes he gets really tired. Because of this, there are some things that we want you to remember about Rain.

"One thing is that Rain has a really big personal space bubble. You all have talked about personal space bubbles before, right? (Several of us nod and put our arms out, describing an invisible bubble around our bodies which is a private, personal space that must be respected.) Right. So Rain has a really big space bubble because it's easy for him to get knocked down if he's jostled and bumped too much, especially when he's getting up or down from the rug. That's why Rain usually gets to be first or last to the rug or in line, because he needs that room so he doesn't get hurt.

"You've probably also seen Rain's wheelchair, and you might have questions about that. Duchenne can make a person get pretty tired on a long walk, like from here to the lunchroom or out to recess, so Rain uses his wheelchair to help him get around when he has to go a long way or when he's in a crowd where he might accidentally get knocked over.

"Now this sounds kind of funny because it doesn't look that way, but it makes sense if you think about it-- Rain's wheelchair is kind of like his pants. (Giggles. Quizzical looks.) What I mean is that it is totally ok to say to anyone, "Hey, nice pants." But it is not ok to suddenly grab someone's pants or touch them without permission-- that would be wrong. So, if you want to say to someone, "I like your wheelchair. That's really cool," that is totally fine. You can do that. But if you want to touch someone's wheelchair, you have to ask first and then touch in a really polite and gentle way. And if that person says no (I theatrically hold my hands behind my back), then you have to respect that. Also, it would would be really weird to trade pants with someone in the middle of the school day, right? (Lots of giggles on this one.) Well, just the same way, you can't go and sit in Rain's wheelchair. It's only for him, just like his pants. If you wanted to be really kind and helpful and push Rain's wheelchair for him as you go down the hall together, that's ok but you have to ask Rain first. You say, "Rain, can I please push your wheelchair?" and Rain might say yes or he might say no. If he says, no (hands behind my back again), then you have to respect that. But if he says yes, then you can touch the handles on Rain's chair and help him go down the hall (I demonstrate touching the wheelchair's handles). 

"Ok. There's just one other thing that I want you to know about Rain and it is that he is really fun and you should play with him! Rain has some special toys that he can bring out to recess--some things that don't make him too tired. If you want to play with him you certainly may. Just remember that you are there to play with Rain, not just to play with his toys. If you just go and take his toys and don't really play with him, that's really rude, so I know you won't be doing that. Instead, you'll be playing with Rain with those toys, which is really fun.

"Rain also sometimes likes to play running games, too, and there's a special trick to doing that the right way. Rain, would you like to demonstrate with me? (Rain gets up and comes to the front of the room with me, where we've made plenty of space for our demonstration.) 

"Ok, Rain and I are going to show you how to play a running game with Rain. We're going to run across the room and I'm going to run as fast as I can. (Rain and I run across the room, each going as fast as we can. I beat Rain handily.) 

"Did you see that? What happened? When I ran as fast as I could, I wasn't really playing with Rain. It might be kind of fun for me to run around by myself but that doesn't work very well if what I really wanted to do was to play with Rain. If I'm going to run with Rain, I need to run not as fast as I can, but I need to run as fast as Rain can. Let's try that again. Ready, Rain? Go! (Rain and I run across the room again but this time I make sure that I'm running at Rain's pace, just one step behind him. We reach the finish line at about the same time. Rain giggles beautifully because he just loves this game.)

"Does that make sense to you children? When I run as fast as Rain can, then we are really playing together and it's super fun.

"Shall we show you how to play Rain Tag? You already know about those gentle, two-finger or one-finger tags, right? (I say, while demonstrating.) You can see how I do it by holding out my arm nice and straight and using a really gentle touch because I'm remembering about Rain's space bubble and I don't want to accidentally hurt him. That would be a real bummer. Do you want practice that gentle tagging for a minute? You can just tag your own other hand. (I demonstrate.) See how you can feel even a really light touch? Ok. Let's try it all together. We're going to do that really nice tag with just one or two fingers and a long, straight arm and we're going to remember to run as fast as Rain can. Rain will be It this time but you guys can play a lot more at recess time. (Everybody stands up and starts slow-running and giggling. Rain giggles his way around the room and tags several of his classmates. I usually give them just a minute for this, stopping them after Rain has tagged three or four kids. This year, everybody gets it right away. I love Second Graders.)

"Ok, that's enough. Everyone may go and sit in their seats again at their tables. I have another kind of cool thing to show you if you want to come up one at a time when I'm finished explaining what it is. I have a whole bunch of little strap-on weights that we can use to help our imaginations to understand what it might be like to have Duchenne. Now really, we know that only a person who actually has Duchenne, like Rain does, can truly understand what it feels like. But we can put on these weights for a minute to kind of get an idea of what we can imagine Duchenne might be like."


That's about it for the speech. At this point, the kids come up to see me individually, and I ask them to hold a weight in their hands. Then I ask them if they want me to try strapping some weights onto their arms and legs so they can feel what it feels like. Usually at this age the girls are still pretty slight and find one set of weights plenty heavy enough to get the idea. Unfortunately, a lot of the boys have that whole show-off thing going on, and I have somewhat less success with the weights with them. I brought four sets of 2.5 lb weights with me, so I went ahead and strapped one set to the arms, one set to the legs, and I told them something like this:

"Let's just imagine that these weights are like what it felt like for Rain when he was about five years old. Now, you have to imagine that these weights are all over your whole body--on your head, on your shoulders, your chest, your back, your tummy, your legs, even your fingers and toes, ok? How do you feel? Can you move around a little? What about going to the lunchroom? What about brushing your teeth or hanging your backpack up on one of those pegs in the hall? Now remember, this is kind of like what it feels like for Rain only he has to wear the weights all the time--all day and all night without ever stopping. And then each year, it's as if the weights get heavier and heavier."

Then I'll add another set to the ankles, saying, "This is age six," "This is age seven." And I remind them that I don't really have enough weights to truly demonstrate because Rain would be feeling more weights on his arms and head and back and so on. Then, while they're wearing all of those weights, I tell the kids, "Now, remember, right now Rain is eight years old," which they understand means to add another round of imaginary weights (since I only brought enough weights to simulate up to age seven). This was pretty effective and often got a raised eyebrow even if nothing else got through. Then I tell the kiddo, still loaded down with weights, to image what it might feel like at age ten, age fifteen, age twenty.

By this time, most of the kids seem to be getting the idea. It's not fool-proof and some of the stronger, bigger boys seem unable to get outside of their own heads and into a good imagination, but the vast majority of the kids seem to pick up on the concept. My hope is that enough of the kids get a good enough idea of what I am trying to say to them that Rain has an overwhelming group of real allies who can put themselves into his position, even if only for a moment.


Rain came home from school yesterday, beaming with happiness and eager to tell me about how he had played with a lot of kids at recess. His teacher thanked me for coming in to talk to the class and Rain continues to get high grades in both academic subjects and behavior/deportment. I guess that can be taken as a sign that my education efforts are working.

Wednesday, August 26, 2015

A Good Beginning

It sneaks up on me, how children who were born as sweet as sweet as can be can continue to sweeten and endear themselves more and more with the passage of time. It shouldn't be such a surprise as it is completely within the nature of things, yet it never fails to amaze me. I'm surprised by the first day of school every year, too. Surely it hasn't been long enough for it to be the end of another summer already. Yet, contrary to my senses, it is indeed the beginning of another school year.

Usually, we start the year with the same ritual performance: we listen to our "theme songs" and try to "ruin" the obligatory, cheesy first-day photographs. But this year Scott had an early morning appointment, leaving me to carry all of the necessary gear, so I asked the kids to simply pose this time.


Second and Fifth Grades

With the first couple of days under our belts, this year is sending every signal that it's going to be a favorite. We seem to have finally internalized our good organizational habits (check out my four-part series on executive functioning supports), we've managed to get up and out on time three days in a row, and the kids are coming home with big smiles and stories about how they loved a certain lesson or had a great time playing with some other kids at recess. 

Am I allowed to breathe a sigh of relief? The kids think so--they picked this theme song for me. They're right, of course. There's really no need to worry at all.

Friday, August 21, 2015

Monday, August 17, 2015

The Power Chair

We thought we would be ready—physically and emotionally prepared—for the intrusion of a power wheelchair into our family.... There is a certain amount of mourning to every milestone in a progressive disability like Duchenne. A power wheelchair is certainly a milestone. This machine, which represents nothing less than freedom and speed and independence to my son, is hard to for me to regard as an ally.

All the more reason for us to push through and get it done with as much grace and enthusiasm as we can muster.


With the decision to start the process now made, Rain tries a tester chair with the help of a representative from the durable medical equipment agency, NuMotion.


We gave him a pep talk about safe and responsible wheelchair driving-- always wear your seatbelt, never run over a person, watch out for transitions between uneven surfaces, don't drive your wheelchair into deep water, etc.


This smile tells the whole story: the Awesome Realization of Power!

And then he was off on his own and this view was all we saw of him again for an hour.


Rain has chosen a Permobil F5 front wheel drive stander/power chair in Radiant Red. Along with Rain's doctors and physical therapists, we believe that it is the best choice for him at this time. Rain is still walking now but needs the independence that only power can provide. We expect that he will transition in this chair over the next five years, making the change to full-time seating as he gradually loses the ability to walk and stand. A standing chair can prevent/stave off the painful, debilitating contractures of the feet and ankles that plague folks with Duchenne as they no longer bear weight or stand independently. This is a chair to maintain total body health and encourage independence like no other.

Since Rain relies on Medicaid through Colorado's (usually) wonderful CHCBS Waiver program, we've been told that it may take up to a year of denials and appeals to get his chair. Or not. We could get lucky and the folks who make these decisions may see that the best doctors and therapists in the state recommend this particular chair (and not a lesser model) for Rain at this time, resulting in an easy and appropriate approval. Let's hope for the best outcome for Rain, really the only person who matters in this decision.

I'll keep you posted.

Friday, August 14, 2015