Blog #72~Down Syndrome and Low Muscle Tone
October is Down Syndrome Awareness Month. In Blog #26, located in the October 2012 archives, there is a complete overview about Down syndrome.
This week I want to put a lens on one of the physical traits of having Down syndrome. Hypotonia, or low muscle tone is common in almost all babies with Down syndrome. The appearance is floppy and the muscles are flaccid. As soon as I touched my son Nick after he was born, I could feel this. He felt like a rag doll.
The good news is that hypotonia generally improves over time with early intervention and physical therapy. Within eight weeks, we met with the early infant intervention team and began the work to confront his low muscle tone. Right away, we were instructed to roll up blankets and stuff them on either side of Nick when he was sitting in his carrier. Since the muscles are so floppy, there is a tendency for the limbs to dangle open. We then started from the top and worked down. The first step was to get the neck strong. We incorporated a lot of tummy time providing lots of bright, colorful, and contrasting toys that would be stimulating. His brother Hank helped out by pushing the buttons on musical toys so that Nick would lift his head up. This would help develop more alertness as under arousal is typical for babies having Down syndrome.
Everything is ready for tummy time, look at that scrawny baby 🙂 …….
Once he was able to support his head, the early infant team began to work on building strength in his trunk. At first he had to be held at the shoulders while sitting on a play ball. The facilitator would lead the group with songs and blowing bubbles. The babies would both track the bubbles and try to pop them with their fingers. Gradually, the therapist was able to hold Nick at the chest, and after several months hold his waist while he worked on the ball. The physical therapist told us that Nick would not be able to pull up to stand or walk until his core was strong. This meant when he could sit on the ball supported with her hands down on his hips. This took a very long time for Nick.
We propped up pillows in his high chair so he would flop over to the side. His brother Hank, keeping him entertained…….
A special chair was provided by the early infant intervention program. Nick’s trunk was still weak and he had a lot of trouble sitting upright…….
Take a look at the average gross motor milestones:
Typical age 5-9 months
Down syndrome 6-30 months
Nick 22 months
Typical age 6-12 months
Down syndrome 8-22 months
Nick 28 months
Typical age 9-18 months
Down syndrome 1-4 years old
Nick 3 ½ years old
As you can see, Nick’s low muscle tone affected his development in all of these gross motor areas. After his first birthday, the physical therapist suggested we try doing horseback riding therapy with Nick. He was the youngest person they had ever tried at this facility. We made the trek out to Tomball, Texas for these sessions for over a year. Nick gained a lot of trunk strength during this time. Keep in mind, not only were the muscles weak but also had less endurance. Doing the sessions on the horse helped with increasing his endurance and the sensory input was very stimulating.
Giddy up Nick……
After a year of hard work, he finally sat on his own! Nick with his cousin, Austin
Once Nick was able to sit up and crawl we began to find creative ways to get him up on his feet. Hank would often dangle his favorite musical toy at the top of the bean bag chair. As the music blared and lights flashed, Nick would climb up the makeshift mountain to reach the toy. Around this time, I also began redecorating the living room. I mounted several musical toys above the fire place so if he wanted to get to them, he had to pull up to stand. His brother also enticed him, bouncing ping pong balls on the coffee table. He would crawl over, pull up, play and laugh with Hank.
It was a long, slow rode to get him up and walking. Nick had to work a lot harder to build his strength, endurance, alertness to defy the effects of low muscle tone and under arousal. Hard work always pays off, and gets you to the top of the podium!
Nick in Middle School, brings home the gold 🙂
That’s what is in my noggin this week!