Often, a child with Down syndrome exhibits varying degrees of low muscle tone. Please note that muscle tone is different from muscle strength. Muscle tone refers to the resting state of the muscle. And, low muscle tone means, when not in use, the muscle is more relaxed than a high-tone muscle. This also means it takes more effort to get that muscle moving and to keep it moving. This is one of the laws of physics in action: an object in motion tends to stay in motion and an object at rest tends to stay at rest, unless a force acts against it (or something close to that). Note: I’ve described low muscle tone in analogous terms in a previous post if you want to read more about it: http://walkonthehappyside.blogspot.com/2008/10/down-syndrome-obesity-it-may-not-be.html.
The behavioral impact of low muscle tone on a child also varies depending upon the degree of low muscle tone and their personal motivation. I’ve heard folks with and without children with Down syndrome describe them as lethargic, couch potatoes, or worse, lazy and unmotivated. I can tell you, as a person in the low range of normal muscle tone who used to “run” on a daily basis, none of these hit the nail on the head. The truth is, it was just harder for me to run than it is for many others (like my high muscle tone husband). I loved to run mentally but I struggled every step of the way physically, frequently talking out loud to myself, “pick up your right foot. Put it down. Pick up your left foot. Put it down…”. My heart and head were in it but my body… not so much. This being the case, I find the last of these unfortunate descriptions — unmotivated — is totally off the mark! As a matter of fact, it’s opposite — motivation — is actually the key to my and my children’s activity level and progress.
My little guys, 3 1/2 year old identical twins with Down syndrome, have muscle tone in the low normal range and are borderline delayed in their gross motor skills. As such, they receive Physical Therapy 2 times per week during their school day. I recently took part in my sons’ therapy sessions — taking advantage of their schools’ “open door” policy. BTW – Most schools that offer special education services have this policy and I highly recommend taking advantage of it so that you can feel comfortable (or otherwise) that your children are getting the best and most appropriate education and services for their needs. That said, unfortunately, I found that the boys’ Physical Therapy sessions were not as productive as I’d hoped… Potentially explaining, at least in part, the regression in gross motor skills I’ve noticed since September when they transitioned to this school and their new therapist. But, rather than bemoan what I did not observe in these sessions, I’d rather focus on what I happily did observe during the boys’ Occupational and Speech Therapy sessions. These therapists were VERY effective in motivating my guys to do what they wanted them to do thereby practicing and improving their related skills. I was wildly pleased with the way the OT and Speech therapist worked with my boys each in their own personal way.
Here are some of the critical elements I observed in motivating my special needs children:
- The therapists each worked side-by-side or hand-over-hand with the boys (as appropriate)… providing just enough support but NOT performing the task for them.
- They demonstrated unfamiliar and familiar tasks alike, prior to each activity to ensure proper form and performance.
- I LOVE that they continuously praised my guys not only for succeeding but for trying too!
- Like cheerleaders cheering for their teammates throughout the game (not just at the end), the boys received constant encouragement during each step of a multi-step task!
- And, their praise and encouragement came in a form that my boys like best… crazy loud whoops and high-5s… Which my guys LOVE!
This is EXACTLY what MOTIVATES MY children to get up and move… despite their low muscle tone!
So, here’s the pitch…
For parents/caretakers: First, know what motivates your child. Then, take advantage of your right to participate/observe their therapy sessions so you can determine what is and isn’t working. After identifying the gaps, use your personal knowledge of what motivates your child to better assist your therapists in optimizing their limited time with your children. Finally, make sure you carry through at home. One of the most memorable and important things a therapist told me was, “The 30 minutes I spend with your child on any given day will not make much of a dent in their development. It’s what you do with them — carrying through on the exercises we do — that will help them the most.”
For Therapists: Please let us parents help. Invite your clients’ parents to come in and participate (not just to observe though that’s better than nothing!) Engage the parents to find out what motivates their child. And, then, just like being a parent, do your best to follow through. Take a vested interest in the outcome…. it pays a fortune in gratitude and achievements!