Extracurricular activities
Despite DMD, I want my son Avery to be able to participate in extra curricular and group activities and don't want to limit him if his body is able. I remember a thread several months ago on the old message board regarding activities that some of the boys were involved in, but I can't seem to find it and would like a fresh perspective.
I recently took him to see his first baseball game and all he talks about is wanting to play baseball now. I know this phase will pass and he'll be on to wanting to take karate lessons by next week, but it really got me thinking about getting him involved in something.
I have considered a martial art or t-ball, but although he is doing quite well now, I worry about something so physical taking a toll on his muscles. I am also considering allowing him to take up a musical instrument but again, I worry about his stamina.
I would love to hear others share their thoughts on the topic. I want my little guy to experience everything in life to the fullest but at the same time I want to protect him and worry that by allowing him to participate it will speed up the progression of the disease.
I recently took him to see his first baseball game and all he talks about is wanting to play baseball now. I know this phase will pass and he'll be on to wanting to take karate lessons by next week, but it really got me thinking about getting him involved in something.
I have considered a martial art or t-ball, but although he is doing quite well now, I worry about something so physical taking a toll on his muscles. I am also considering allowing him to take up a musical instrument but again, I worry about his stamina.
I would love to hear others share their thoughts on the topic. I want my little guy to experience everything in life to the fullest but at the same time I want to protect him and worry that by allowing him to participate it will speed up the progression of the disease.
Replies to This Discussion
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Permalink Reply by Rhiannon Traigle on
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I heard this discussed at the conference and my PT suggested it this week...horse back riding therapy? I don't know if your son would be interested or if you have someone in your area, but my PT was telling me that there is a PT or OT? in my area that uses horse back riding as physical therapy and it is covered under some insurances because it is coded at PT!! (it promotes strength and balance in the hip area?) I just thought this might be a fun way to get exercise and learn a great sport/skill! Also, swimming is suppose to be the best! You may be able to find somewhere with an indoor pool (like the Y) during the winter and Avery can still get great physcial activity.
I have had another parent tell me that even though it elevates his CPK levels she still lets him play baseball, she just monitors he endurance (and has discussed this with her Dr.) Riley tires easily and lucky for me he isn't really interested in t-ball so I too have been looking for other 'less physical' activities.
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Permalink Reply by Lee Ann Faeth on
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Hi Rhiannon,
Thank you for your suggestions. We've actually looked into hippotherapy and fortunately my insurance will cover it because his pediatrician wrote an RX for it. He also swims and did weekly aquatic therapy for several months, but I was looking for something else besides what is recommended as p/t. Every time we drive by a dojo he tells me he wants to learn karate. Then after seeing the baseball game a couple of weeks ago, he started talking about that. I just want him to be able to enjoy sporting activities or other extracurricular group activities if he really wants to be involved. KWIM?
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Got ya! I'm all outta ideas for other stuff...I guess I'm a little overprotective and I want Riley's physical activities to being 'therapeutic' in nature. I say this, but if he wanted to play ball I know I would let him. I don't think I would do Karate though! LOL! I am kinda 'lucky' if you want to see it that way, because Riley has not yet shown any interest in sports or other activites. He has gone to a birthday party at gymnastics and wanted to keep going. I looked into it and am considering letting him go only because one of the coaches is a PT! LOL! See how I am!! Crap, I'm the wrong one to reply to this...I just get reply happy...sorry I am of no help! And thanks for reminding me that it is called hippotherapy...I only learned of it this week and could not remember.
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Permalink Reply by Laurie Paschal on
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We have Sam (and Jake, Abigail & myself) in karate. So far it's going well. There's lots of stretching. When doing sit ups and push ups, he does more stretching. It's also great for balance. Sam won't be making it to black belt, but he's enjoying himself for now. Plus he's just so stinking cute in his gi.
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Laurie, I thought you had mentioned that Sam was taking Karate before. My mindset was kind of that maybe the stretching would be good and something his instructors may adapt for him. He wants to be a Power Ranger right now, so I think maybe a martial art may be the right avenue.
Thank you for sharing because I am really interested in hearing others experiences. :) Please keep them coming because I think they will be helpful to many of us who have preschool age boys and younger.
Laurie Paschal said:We have Sam (and Jake, Abigail & myself) in karate. So far it's going well. There's lots of stretching. When doing sit ups and push ups, he does more stretching. It's also great for balance. Sam won't be making it to black belt, but he's enjoying himself for now. Plus he's just so stinking cute in his gi.
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Oh....and Sam is absolutely adorable in his gi. :)
Lee Ann Faeth said:Laurie, I thought you had mentioned that Sam was taking Karate before. My mindset was kind of that maybe the stretching would be good and something his instructors may adapt for him. He wants to be a Power Ranger right now, so I think maybe a martial art may be the right avenue.
Thank you for sharing because I am really interested in hearing others experiences. :) Please keep them coming because I think they will be helpful to many of us who have preschool age boys and younger.
Laurie Paschal said:We have Sam (and Jake, Abigail & myself) in karate. So far it's going well. There's lots of stretching. When doing sit ups and push ups, he does more stretching. It's also great for balance. Sam won't be making it to black belt, but he's enjoying himself for now. Plus he's just so stinking cute in his gi.
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Permalink Reply by Sharyn Thompson on
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Rhiannon Hubbard said:His neurologist mentioned soccer as something that might be fun for him as he can really self-limit how much he runs or possibly play goalie. We're thinking about it for next spring, but I'm not sure if he'll really enjoy it. We've also planned to sign him up for t-ball when that comes around next year, as he LOVES baseball as well
I'm glad you wrote this. James is desperate to play soccer but my husband keeps saying it won't be suitable for him. But then, who am I to try and deny James's dreams? If it gets too hard for him, James will make the decision to stop. Right, I am going to find a soccer team for him to join!
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Permalink Reply by Tina on
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Our son participated in gymnastics when he was 3, 4 , and 5 years old. I kept him in the 3- 4 y/o age group when he was 5. He didn't know the difference. His balance and coordination improved greatly. It didn't require any vigorious amount of exercise that was bad for his muscles and his instructor knew about his diagnosis so she helped and supported him with only a few of the things he couldn't do.
On the downside, this sport required him to walk barefooted on the mats and as a result of this, he developed an infected plantar wart on his foot which required lancing and a 10 day course of anitbiotics. I suppose anyone is at risk of developing these sort of infections ( even his pediatrician suffered with an infected plantar wart while in college) but I wondered if he was more susceptible to it due to being immunodepressed from the steroid. We quit doing gymnastics after that semester because the higher levels demanded more on his muscles.
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Permalink Reply by MicahsDaddy on
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I've played soccer my whole life and would love for my son to play it as well. The problem with soccer is this, though.
1. When kicking the ball, it affects the ankle, knee, and hip. My legs strengthened in those areas over time. Now, 31 years later, my ankles and right knee are seriously worn down. I wonder, with DMD, how kicking a soccer ball would speed up the process of wearing down these 3 areas, rather than strengthening?
2. Broken toes, ankles, legs. To most, Soccer looks like just a fun kids game...No. It is actually one of the sports with the most contact...and they only wear shin guards. Kids kicking and running into each other, getting the occasional ball kicked in the face, kids getting knocked to the ground, or rolling an ankle when they run into a small hole/divot/uneven area of grass.
But, what it comes down to is this. Later in life, if your child is in a chair, can you deal with these words, "Mom/Dad, why didn't you let me play sports when I was able to? Now, I'll never get that chance, nor will I ever know what it was like to."
It's a tough decision, we want to do what's best for their safety...we want them walking as long as possible. That's our wants. But, what about what they want? What about their mental well being? Yah, they walk longer, but they may one day have some animosity against us for not allowing them to play. It's tough to rationalize with kids...if there even is any way to rationalize with them. I am sure it frustrates the heck out of them to hear from their parents, "Your muscles aren't strong enough to play sports."
My son hasn’t expressed an interest to do anything other than miniature golf. I am both sad and glad he hasn’t. Sad cuz I wanted a boy to play sports with, like my dad did with me. Glad because I haven’t had to make that tough decision yet to allow him to play or not. I think I would let him.
This past school year, the teacher expressed concerns about him kicking the soccer ball around with his friends during recess and lunch. We told her to allow him and she asked us for a letter. So, I wrote a letter to her allowing him to kick the ball around with his friends. Why, cuz I fear that “Dad, why didn’t you let me….”.
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Permalink Reply by Kelvinsmom - Michelle on
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Kelvin played soccer last fall, before we knew. He regulated himself at the time and would come out when he was tired. He sat on his ball a lot waiting for his turn in practice, etc. They did lots of stretching too to start. He didn't run as fast as others (at the time, but may now) so, they'd wait on him. He never, ever kicked the ball once in a game, and hardly played, but he felt to be part of a team, with the shirt, pictures taken, etc. That is what I value and so does he. So, we enrolled him again, we start in a few weeks. This time, we just won't let him run, but, at age 5 and 6 they don't have to run far depending on where the coach puts them, etc. Kelvin will only play for a few minutes per game, if he goes that day. I made this clear when signing him up. They are completely fine and understanding, but other parents will need to know, so they don't feel that your child is "messing up" their child's game. I started a fundraiser that will continue forever, it is called Cans for Kelvin. I collect Aluminum cans, sell them (which we just sold our first load) and then will keep the money until we need it and will also donate a portion to PPMD as well. No matter what part of the world we may have to travel some day, we will. I am saying this part, as my sons and my daughters soccer team have been great support, they drop off cans at our door step, along with every friend, neighbor, etc. It doesn't earn a lot, but anything is better than nothing, and these days, asking for money is more difficult. This was my way of asking for money in an easy way, that doesn't cost anyone and folks are giving me every can they come across. I just keep a container in my trunk and fill it often.
Kelvin is also horse back riding for a few minutes at the end of my daughter's lessons. My dad bought these special stirrups, called buddy stirrups so that his feet can fit them. The person giving the lessons actually has someone disabled doing this at her place to stretch their calf muscles and it is helping that child to walk better. Michelle
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I just wanted to update those of you who took the time to respond. :)
Ironically, the director of Avery's preschool informed me the other day that beginning with the new school year, they will be offering Karate classes once a week and fortunately it's on one of the three days that he goes to school. I am so excited because he goes to a very small preschool and will be able to test the waters and see if it's something he will enjoy in a comfortable setting with his "buddies".
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Permalink Reply by cheryl cliff on
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Hi Lee Ann,
We hope you guys are doing well. Have you considered a WII? Ours is new but Alexander LOVES using it and it works well as a sports substitute. He plays baseball, bowling, tennis...anytime he wishes. No complaints of not being able to keep up with the other guys, no problems although he did fall on his butt one time and the ER doc laughed at the kid with a WII injury! Only a minor bruise but well worth the hassle because of the hours of sports fun he gets.
cheryl
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