Today’s spotlight is on a fine young man who I have known since 1996. Yes, that is correct, 1996. I have been with NACD long enough now to have several adults that I have seen since they were infants, Nicolas Cooke being one of them. When I think of individuals that I have the greatest amount of admiration for, Nicolas is certainly on that list. Born with Down syndrome, Nicolas has been seeing us since he was an infant. Over the years I have been so proud of how he shines. Nicolas has developed into a wise, responsible, hardworking, strong young man of excellent character.

Nicolas has done very well in developing physical excellence and participated in his first triathlon at age eight. Nicolas’s mom, Linda, is a swim coach, and knowing the importance of physical exercise, she had Nicolas swimming at an early age. I remember the two of us reminiscing that he went from crawling, creeping, and walking right into a child who could compete alongside typical peers in a triathlon. Today, at age 24, Nicolas is involved in bodybuilding and martial arts and has been featured in a piece by a local gym where he works out.

Nicolas is very active in his community and his church. He has participated in a theater group and is a favorite within the children’s ministry, where he dresses up like Shaggy Dog and teaches children about God. At church Nicolas not only works in the children’s ministry, but he is also on the worship team and can be caught from time to time playing his guitar. One of Nicolas’s additional stomping grounds is at a local horse barn where he works part time. Linda says that Nicolas is on quite a few “speed dials” when it comes to needing help with various projects. Each morning, while Mom works and coaches, Nicolas is very diligent in his responsibilities, cooking, cleaning the home and pool and focusing on his education. Nicolas also assists in caring for his invalid father who suffers from a debilitating, degenerative neurological disorder. Being the youngest of nine children, Nicolas now has eight nieces and nephews that he loves to read to, play with, and supervise.

Linda knew that working on appropriate behavior and manners and teaching him to have a strong work ethic were crucial in helping him to be a highly capable adult. She and I can look back on his “stubborn years,” being thankful that she always kept firm boundaries in preparing him to be an individual that other people would seek spending time with.

In talking one day with Linda, she commented on the fact that Nicolas can clean her house better than anyone she could ever hire. His attention to detail and making sure each and every job is well done is a real asset. At the time Mom said, “I bet he could even be hired out and do a better job than any other cleaning company,” and then her eyes lit up. At the next evaluation I was pleased to hear that Nicolas already had a few clients.

It is a pleasure to work with so many wonderful families through NACD; and I am so blessed to be able to follow a number of our NACD kids and watch them become such fabulous adults. Nicolas is a man who makes each and every life he touches that much better.

Reprinted by permission NACD Newsletter, February 2020 ©NACD

Read the full article about Nicolas here: https://www.easttexasmatters.com/news/local-news/adaptive-athletes-shine-at-east-texas-gym/

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After being gone several weeks this summer, I had not maintained my normal fitness routine. You see, I am one of those crazy people who likes to run marathons and work out at 5 a.m. I also like food. I figure the more I work out, the less restrictive I have to be with what food I eat. Anyway, while I am home I am used to doing classes daily that consist of strength training, Pilates, etc. However, when I am on the road, I mostly just have time for a quick run on the treadmill. It is exercise, but it is different exercise. This week since I have been home, I am EXTRA sore. Why? Because I am back to my strength training and muscle building activities that I haven’t done for three weeks. I am sure many of you have been there. You get good with working out or doing weights, then you stop, then you go back to it and you feel like you are going to die. That has been me this week!

So what does this have to do with your NACD program? I would like to specifically talk about gross and fine motor function and development. The cliché “if you don’t use it you lose it” comes to mind. While I have been working out this week, I have been thinking about some of the kids that I have worked with over the past several weeks – specifically, kids who have muscle balance issues and tone issues (high or low), which are impacting their ability to walk well or run. Due to summer schedules, it has been difficult for many of the families to stay on track with their programs. Believe me, I know. However, these kids haven’t improved in their mobility, and in some cases, they have regressed due to lack of input.

So I put the two different scenarios together and started to do some research. In a study in the Journal of Rehabilitation Medicine, researchers from the University of Copenhagen took 32 young and older men and had them stop exercising, using immobilization devices on one of their legs. In as little as 2 weeks, the younger men lost up to a 3^rd of their muscle mass and strength in the immobilized leg. Two weeks! The older men in the study lost 25%. What is more interesting is that even after 6 weeks of retraining the muscle, the muscle strength for the men was still 5-10% lower than when they started. This was for a neurotypical adult. So if you think of your child with developmental issues, imagine what not working on muscle balance can do to their muscles. While the brain has plasticity and stores the muscle memory, muscle fibers grow but then can atrophy – really quickly. Whether we are doing sit-stands, or standers, or leg extensions, or crawling on a floor, the more the child is able to do that specific muscle building activity CORRECTLY, the more rapid the muscle fibers will grow, therefore not only increasing the strength and mass, but the muscle balance and tone. If we do the activities for a bit, then take time off and don’t exercise them, the less likely those muscles will stay developed, and they actually lose their ability to function. We see this with ourselves when we stop a workout plan; the same is true, and even more so, for a child with developmental issues.

Something to remember while on the subject of developing good muscle tone and strength is that function determines structure. The more a child (or adult for that matter) sits a certain way, sleeps a certain way, or even walks a certain way, the more likely they will continue to develop the muscle memory for that type of movement or position. For example, for a child who tends to always be in flexion – think back rounded, legs bent and curled up — the more likely their mobility will be like that – knees in flexion instead of straight, posture slumped instead of straight. That child needs extension. If the child is in that position too much of the time, so that their tone is then high (or tight), then they need even more extension. The flexor and extensor muscles essentially need to be equally strong to have good muscle balance. It is the same with abductor and adductor muscles or abdominals and back: they all work together to create a strong movement.  If we are to look at neurotypical development, especially with the younger kids, our goal is to build the proprioception/tactility and muscle balance to develop good tone. So if your child is like I am describing, and you see on your program that a high frequency of those mobility exercises has been recommended, that is why. We want to create an opportunity for each child, regardless of their diagnosis, to move well. The reality with this is that the more involved the child is, the more INPUT their brain and muscles need to make it happen. Tactility work is important for this also, as it provides the sensory input necessary for the brain to register the output. Finally, working the muscle in the correct way with frequency, intensity, and duration builds the mass and strength, therefore allowing the movements to occur.

The next time you are working out and your hamstrings and abs are sore in the morning, remember how important it is to stay the course. Stay consistent, not just with your own workout regimen, but your kids’. Happy programming!

Reprinted by permission of The NACD Foundation, Volume 29 No. 4, 2016 ©NACD

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