I had two great opportunities in the past month to assist parents of older children with ideas and strategies to help keep their children with Down and Prader-Willi Syndromes more fit and how to have fun while doing it.
The first was a training event that we put on for parents of children with Down Syndrome entitled, Strategies for Adults with Down Syndrome: Having Fun By Staying Fit and the second was at a clinic for which I provide physical therapy, for children with Prader-Willi Syndrome.
What struck me in both instances is how we (therapists and parents) try to inject what our idea of exercise is upon children with one disability or another. No wonder so many of my programs designed for kids to stay fit have flopped over the years, I obviously have been starting from the wrong place. I believe we need to start by having fun and let everything else follow.
Before I go any further, please let me clarify the population of kids and adults that I am writing about. Somewhat older children in their early teens and beyond, that probably do not get much organized physical therapy anymore, that have established a general level of ambulatory function, get around pretty well and like the rest of us could benefit from more physical activity. These folks have diagnoses within a wide range but could include things like Down Syndrome, Spina Bifida, Cerebral Palsy, Prader-Willi Syndrome and many, many more.
The fitness profile is always unique to the person but there are many similarities between these folks that can help us design fun and productive programs that are sustainable and really work.
First in terms of organization I recommend that you establish a monthly calendar. I have found that when we do things by the “month” as opposed to the “week” we have a much better chance at being successful. For example if we say that there are 30 days in a month and we would like our children to be “active” for more days out of the month than they are not active, then we can simply select more than 15 days out of the month and write down what we would like to do on those specific days.
What are the components of a successful monthly fitness program for special needs kids?
I have found that combination programs that contain both basic fitness and life interest activities are the most effective and fun. Here is how I generally set it up for families.
Program A: (Basic Fitness) 20-30 minutes 2-3x/week
Program B: (Life Interest Activities) 20-30 minutes 2-3x/week
Okay, let’s start with the basic fitness program.
Program A: (Basic Fitness) 20-30 minutes 2-3x/week
15-20 minutes cardiovascular component if possible: For example, stationary bike, treadmill walking, elliptical machine, swimming, destination walks, hikes, and bike rides (someplace you are going that they enjoy to give them a goal/endpoint)
10-15 minutes of basic exercise that could include stretching and general upper and lower body strengthening exercises such as those on a circuit training regimen at a fitness center. Or it could be a few exercises that a PT has given you for your child that are helpful and up to date.
Basic fitness programs of course can be done just about anywhere, however I have found that when we make an effort to leave our homes we are usually a bit more successful. For example going to a health club, community center, or day program or just out in the neighborhood. Also with most of our folks we are more concerned with muscular endurance and stamina as opposed to short duration strength, therefore the exercises should be geared toward less weight/resistance and more repetitions.
So referring back to our monthly calendar if we say our objective is to implement a basic fitness program 2-3x/week for your child then simply select between 8-12 days on the calendar where your child is going to do “basic fitness” and of course what time of day and where you plan on performing the program.
Program B: (Life Interest Activities 20-30 minutes 2-3x/week)
I define life interest activities as those which require our children/adults to be actively engaged in something mentally such as a leisure activity while they are standing and moving. Life interest activities do not have to be challenging in a cardiovascular or strengthening sort of way, but they do need to be fun and they cannot include a couch or a TV. The activity does not have to be rigorous and they do not have to sweat. This is different from hobbies and crafts which are a great back-up for rainy days.
Some common examples of life interest activities that have been successful for many of my clients are such things as:
* shooting a game of pool
* Magnetic or velcro darts
* Air hockey
* Lawn hockey
* A close-up game of Frisbee
* Croquet
* Shooting hoops
* Racket sports (tennis, racquetball, badminton, just the hitting part not an actual game)
* Golfing (either at the driving/putting/chipping range or miniature golf)
* Slow pitch batting cage
* Bowling either traditionally or using a ramp
* Lawn bowling or Bocci ball
* Horseback riding
* Tetherball
* 4-square
* “Bounce-back” type activities with various balls and objects off walls/netting
* Horseshoes (the plastic more safe variety)
Like with the basic fitness program I recommend making a monthly calendar where you plan out 8-12 days with short periods of time where you will help your child participate in a life interest activity. Going in you should realize that you will probably try some activities that they will not like as much, but being creative and trying as many as possible will help your child learn the activities that they really enjoy. The goal long-term as I see it is to eventually find a handful of life interest activities that motivate your child to stay active and have fun
Many parents ask me about hobbies and crafts and how they fit into my ideas about keeping older children more fit. Of course as a physical therapist I would like to see the kids moving around to some degree and many hobbies and crafts require sitting down. With that said, your program must have contingency plans for rainy days as well as when the schedule just doesn’t go to form. Hobbies and crafts are an excellent back-up and they fit one of the main criteria which is that our program does not involve a TV.
Another question that I get frequently is about Wii video games and whether or not it counts as being “active.” I would use the Wii sparingly mixed in with non-video life interest activities and make sure that the kids are moving around. If you find a game on the Wii where your child is very active, sweating and getting a good workout (such as Wii boxing) then consider making that activity part of the fitness portion of the program
The last component of your combined fitness and life interest program that I would like to touch upon is the use of rewards to keep your child engaged in the program. Ideally its optimal to not use rewards and that the activity itself is the reward, however I am a realist and know that this is not usually the case. When using rewards the first thing I like to determine is how long your child can follow the program without being rewarded. Can they follow for a week and be rewarded on Saturday for their participation or do you need to reward them every day? Most children with special needs that I have worked with have difficulty following the program for an entire month without being rewarded. I have found most success with determining the reward time frame and the actual reward first and then use stickers, stamps or something similar to keep track of each time your child participates in either fitness or life interest activities. Then you simply add up the stamps or stickers until the reward period is complete and give them the reward.
