When Spinal Muscular Atrophy (SMA) begins, the body starts to rapidly turn off functions to the body to sustain life-sustaining organs for as long as possible.
When I gave birth to my first daughter with SMA, we had no idea why she didn't move. At her two week appointment, the Pediatrician said, "Let's wait a month and see where she is at then."
I knew I couldn't wait that long; Something was wrong now, so I started in-home therapy with her. From two weeks old to six weeks old, I worked with her every day. Day by day, I saw increased movement even though I could see her becoming weaker and weaker.
Fast forward 2-and-a-half-years later. I had another baby with SMA. At birth, we didn't know it. At seven days old, we drew blood samples sent them to a lab, and a week later, the doctor said, "She has Spinal Muscular Atrophy too."
Before the blood draw, I knew my baby had SMA. With my first daughter, I became a Movement Lesson™ Practitioner so I could teach her and others like her how to move. During my training, I learned an assessment technique called the "Newborn Movement Assessment." I did the assessment with my daughter her first day of life and then three days later, noting an obvious heaviness in her pelvis.
At three weeks old, my baby received her first dose of Spinraza.
At 11 weeks old, after four doses of Spinraza, her digression finally stopped, but she lost a lot of movement. In 11 weeks my baby went from a what looked like a healthy and strong baby to
Between the third and fourth shots, I called Biogen, wondering if they had had a case where Spinraza didn't work for a child because my baby was getting worse week by week. If it weren't for Movement Lesson™, my baby would have been in a much worse state.
Now I will share with you the three things I have learned in the last two-and-a-half years that will help you child with SMA move better.
During all of my baby's digression, my number one priority was to preserve her swallow. I had three other kids to care for, so I could only spend 30 minutes a day doing Movement Lesson with my daughter. Sometimes I could only work on her every other day.
I knew I had to get her head moving back and forth again if I wanted her to keep eating on her own. I did that by working on the pelvis and the head. As my baby grew weaker, I was able to maintain critical life-sustaining functions, so we did not have to start feeding her with a tube.
Also, I knew that keeping her pelvis and head working as it should, would be foundational in her being able to create all other milestones movements like the head lift, rolling over, crawling, sitting, standing, and one day walking.
(Please note that there are different severities of SMA type one. Therefore, their strength and needs will vary accordingly.)
(Also note: I have a 3-year-old daughter with SMA type 1 one with a g-tube. Working the pelvis and head of improved her head control and improved her swallow. She cannot eat to maintain nutritional needs, but she can take a drink of water and munch on a few crackers when she wants to. Again Movement Lesson™ results will vary with every child depending on the type 1 severity.)
I have noticed on my children and other SMA children that they are tight. My three-year-old is way tight, yet she can fold in half. If I had tight muscles as she and someone folded me in half, I would cry, but she doesn't cry. I can push on the tight muscles, and she will not make any indication that she is painful. Note; there some muscles that I touch, and the will say, "Ow, that hurts!"
Same thing with my baby. Even though she is a stronger type one that my three-year-old, she is way too stiff for a baby. She has tight muscles all over her body, but if I push on the tight muscles, she doesn't cry.
I have talked with other SMA parents, and they have not noticed the difference until I point it out. As we have identified "tight" spots on their child, I will ask the parent does it or does it not hurt the child. The results are the same; some tight muscles are tender to the child, and other tight muscles are not.
1. Tight Muscles That Hurt - Tight muscles that hurt are muscles that are overworking to maintain stability in the system. Meaning other complementary muscles are not working to maintain stability in the system.
To relieve a tight hurting muscle, you must make the complementary muscles work and start to help in stabilizing the system.
2. Tight Muscles That Do Not Hurt - Tight muscles that do not hurt are muscles that don't know how to work correctly, and what little they do work they are working against gravity instead of moving through gravity.
To relived tight muscle that does not hurt, you must teach it how to rotate so it can move through gravity and work properly.
With this new-found knowledge, you can incorporate it into your current therapies that you are doing with your child. Most therapists will not know what to do with this information. Things like AFOs, standers, deep-tissue message, and stretching increase the tight muscle problem verses help it.
Everyone's muscles have a max stress threshold. If you strain a muscle beyond what it can do, it will simply turn off. Muscles that turn off you can turn back on manually.
My subscription program takes you through this process, step by step. You can go through the program by yourself with minimal support from me, or with more help from me, we will evaluate your child's system together. Then I will coach you through the program, and as questions and unique circumstances arise, I will do one-on-one videos for your child.
*For liability purposes, some areas of the body will require a Movement Lesson™ Practitioner to work on your child, but for the most part, you can do most of the exercises in your home 20-30 minutes a day, 2-3 times a week.
If you have questions,
If you want to get started and sign up, go to https://www.whatdoesthefutureholdformychild.com/pricing. I am happy to help with your child's progress any way that I can.
Putting your child in more therapy does not mean they will have more movement. You need a life, and your child needs a life. One parent put it this way,
"I felt that I was working hard, but not smart before Movement Lesson. I was putting in hours and hours of doing reps all the while wondering how many reps were going to help my child reach milestones when it seemed like her body didn't know HOW to move.
"I love that Movement Lesson™ finally offers me a way to teach her muscles how to move, instead of just making the ones that are moving work harder. With Movement Lesson™ (ML), there isn't a guarantee of a milestone being reached, but there is a promise that there will be more movement and functionality as a result of sustained ML practice in the home" (Amy Concillo).
Movement Lesson™ sets your child's system up for success. The fact of the matter is that Spinal Muscular Atrophy affects everyone's system differently. Some kids have more of a neurological signal from the brain to the muscles than other kids; therefore, the muscle function varies from child to child.
ML organizes your child's system so that if the child's body reaches a point where it can do the milestone movement, it will.
But don't take my word for it. Try it yourself. Let's talk. If you have questions,