In children with Down syndrome there is a notable difference in their body tone, specifically they have a low tone. To clarify, having tone is sometimes confused with the idea of having strength or a cut body which is not the same in this case. In the medical sense it refers to the tension in the muscles when the body is at rest. A typical body has a tension level even when not in motion to protect the body. For example a person walking trips, the muscles at rest in his arms suddenly react to brace his fall. In Elias his muscles sit at a lower tension so not only does he need the energy and work to achieve the status quo we typically are at, but he needs even more to actually move his limbs. I would venture to say that children with low tone are stronger physically than the typical person because it takes so much more to do the day to day things we take for granted. Eli's body may be soft but his strength would surprise you.
This low tone is reflected in every muscle in the body. There are 3 types of muscle, skeletal which is the one we most often think of which give motion to our body. It makes up approximately 42% of a human male. There is cardiac muscle found in the heart and also smooth muscle found in the stomach, intestine, etc. When you really stop to thing of how much of our body is muscle you can begin to understand why there are so many problems associated with low tone. Eli struggles with digestion and is easily constipated. We've learned to massage him regularly or we have problems later. Thankfully he has a healthy heart, but you can imagine that a DS child who has a hole (I often think of it as a leak) in his heart must work so much hard to pump that blood and struggle against the inefficiency of it.
The most obvious result of low tone is seen in developmental milestones. The human body is a miracle and it never ceases to amaze me how we go from these tiny helpless lumps in to walking, talking beings. I recall seeing a tv program years ago of children in orphanages who simply laid in a crib all day. With little stimulus everything became stunted - mental, emotional, physical. In children with low tone their tendency is to simply lay there, after all no one takes on more work unless there's incentive. Its a chain reaction, very little movement leads to less stimulus which then does not encourage development and growth and on it goes. Early intervention becomes critical. Parents and therapist try to find the incentives that work best, sometimes a colorful toy, certain textures, noises or even food to help them achieve their milestones. While Elias is nearly 18 months, he physically resembles at 10 month old child.
I'm sure you're all thinking Elisa's motivator is food given the family he's from. It's a good one but not the best. His greatest motivator is in interacting with kent and I. I can get I'm to crawl all around a room when he sees my attention is undivided. It's great in the sense that I'm with him a lot and I can get him working on his therapy everywhere we go but it's also rough in the sense that if I just leave him with the therapist he simply sits and stares at her and the time is wasted. He's been with Ms Lorri for over a year and just now learning to smile at her rather than wail like a banshee when she comes!
Since everything is so much harder for Eli, we celebrate the small victories. A few months ago I wrote a post of how Elias finally managed to put a Cheerio into his mouth on his own. It really was a big day for us! Right now he is desperate to walk. If he could have his way he'd skip crawling all together. Every chance he gets he will grabs a finger and attempts to toddle alongside for as far as he can go. He amazes me with his determination and I love how he waves his hands in the air, cheering for himself every time he achieves something, even just one step.