Early on, when my children were very young, I expressed my concern to a “lay expert” about the fact that my children — identical twin boys who happen to have Down syndrome — were not eating very much at that time. Though she had children, I refer to this person as a “lay expert” because she had no particular professional or personal knowledge of Down syndrome but was willing to share what she believed.
This particular “lay expert” (I’d heard similar comments from others) said that people with Down syndrome have a problem knowing when they are hungry or sated so they tend to overeat and, therefore, tend to be overweight. She said it was my responsibility to limit my children’s intake to prevent such obesity… for their own good. Of course! Well, leave it to me to need to verify a new-found piece of information especially as it pertains to my children and Down syndrome. I had to make sure that I fully understood this “problem” so that I could help my children overcome any obstacles it posed. Additionally, I wanted to speak from an educated point of view if this same question was ever posed to me. So, I researched it and found out that my “lay expert” had antiquated beliefs and/or inaccurate knowledge about people with Down syndrome.
In fact, it is believed that people with Down syndrome feel and understand hunger and fullness just like the rest of us (which, by the way, doesn’t always stop any of us from overeating or under-eating — with or without Down syndrome). The tendency toward being overweight has more to do with muscle tone than anything else. That is, people with Down syndrome tend to have low muscle tone. Frequently, very low muscle tone. Note: some people without Down syndrome also have low muscle tone AND some people with Down syndrome have nearer to normal muscle tone. (By the way, this latter category is where my guys fall… in the low-end of the normal range… like me, their mother, who happens not to have DS.)
Now, I can’t tell you how many people have said to me, “I don’t think your guys have low muscle tone… They’re so strong!” But, muscle strength is different from muscle tone. Muscle tone refers to the state of your muscle at rest. The best explanation of muscle tone I’ve heard came from our physical therapist, Jill. She explained that the muscle is like the inner-tube/tire of a bicycle. When the tire has good [muscle] tone, it’s full of air and so rides and turns easily. If the tire has low [muscle] tone, it’s limp and very hard to move, ride or turn. Most of you can hearken back to your bicycle riding days as a kid when the tires needed air and you had to r-e-a-l-l-y p-u-s-h to get the bike going. Myself, I don’t have to hearken back that far because my double jog stroller frequently has a flat or two from over-use and under-maintaining. And, let me tell you, pushing almost 80 lbs of boy (my 3 1/2 year old twins) is quite a workout with low-muscle-tone tires! That means, if your muscles have low tone, getting started and keeping your momentum going is more difficult. As such, people with low muscle tone tend to be less active than people who have high muscle tone because it’s just harder to be active. Now, I didn’t research this, but I’d guess that people with Down syndrome have no more weight issues than your average couch potato… except they’ve got a better reason if they do have a weight problem.
So, now that I understood it, how could I help my boys overcome the potentially negative effect of low muscle tone? Well, muscle tone aside, I figure a body’s got to be motivated to move. But, if motivation is not always innate, or is counterbalanced by extenuating circumstances like low muscle tone, I found, it can be instigated. That is, I keep things all over the house and do things that inspire my children to move. Sounds so simple. There are toys and activities upstairs on the balcony and in the bedrooms. There are different toys and activities downstairs in the basement playroom. And, there are still more and different toys and activities scattered (literally and much to my husband’s chagrin) all over and in every room of the house on the main floor. And, throughout the day we move from floor to floor, room to room and activity to activity. Outside, at last count, we have 4 climbing sets, 2 playhouses, 2 sand boxes, a swing/slide set and a treehouse-from-heaven (in progress and, once completed, will include a 14′ slide, 70′ zip cord and 5′ x 16′ climbing net as well as a short climbing wall and standard stairs, for those less motivated). That is, we encourage our boys to be very physical. Honestly, I do think their inborn personality makes them active climbers and jumpers anyway, much to their teachers’ dismay. They climb the 6′ tall cat condo and sit in the top perch. They jump on the trampoline in the basement. They hang on the rings and trapeze bar hanging from my kitchen ceiling. They swing on the swing hanging from the rafters in the bedroom. And, they slide down the various slides found on every floor of the house. All, just in passing. Additionally, we play some very physical games (usually no one gets hurt… not seriously anyway). With bed rails completely enclosing my king-sized bed, we play multi-ball catch and throw where the boys try to keep the balls off the bed and I try to keep them on the bed — all of us using any part of our bodies to keep the balls in a constant state of motion… like the boys. We have duels with balloon-swords and the trim from our rubber mats, we hold hockey or lacrosse shoot-offs in the great room complete with goal and foam balls/pucks, and we hold golf tournaments that run through the whole house. We also play “Keep the cats off the bed”. A game where the kids sit on the top bunk bed and throw multiple cat beanie babies down into a laundry basket on the floor while I throw them back up to them as fast as I can. A good work-out for all. And, we play hide-and-seek running from column to column in their school’s atrium, every day when I drop them off and pick them up. Just a little extra physical activity where I can fit it in. Now, you might be thinking our games are weird, over-the-top or even a bit dangerous. But, the boys’ PT is sure it has helped their physical development and it certainly keeps them active. And, our family social worker says that allowing the boys’ the “dignity of risk” will keep them motivated to try new and different things throughout their lives. (That’s not to say we don’t draw the line on truly dangerous activities…. LOL!) But, they get it. They’re active and curious little men and we try to feed that innate sense despite their low muscle tone.
OK, so in conclusion, my boys — who happen to have Down syndrome — know exactly what it feels like to be hungry or full. And, they know what to do with that information… eat or stop eating. And, while I can’t change their muscle tone, I can try to counteract it’s effect by enhancing their motivation. Note: As it turns out, that day with the “lay expert”, they were just in an eating lull. My boys are holding steady in the 50th percentile (on the “typical” growth charts) for both height and weight — despite being born 2 months early and with Down syndrome.
My motto — Where there’s a will, there’s a way! We just have to find it…
The Will AND the Way!