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Bringing PT Home for Kids with Down Syndrome and Their Parents - featured January 30, 2012

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Bringing PT Home for Kids with Down Syndrome and Their Parents

Copyright January 2012

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By: Stacy Menz, DPT, Board Certified Pediatric Clinical Specialist

Kids with Down Syndrome typically have low muscle tone. This doesn’t always mean anything to people with ‘typical’ muscle tone so I like to use an analogy to help people grasp what it means to have low muscle tone. Think about how we as adults feel at the end of a long day when you finally get to sink into your couch or favorite chair to relax for a few minutes. Your whole body lets down and you melt into that couch or chair and then someone calls for you and you have to get back up. Think of how much energy it takes to convince your muscles and body to move, and then for them to actually get moving. That’s the amount of energy kids with low muscle tone have to put out each time they need to start their muscles and bodies moving.

For kids with Down Syndrome low muscle tone generally also means their muscles are weak and have less endurance so not only is it harder to move but its also harder to keep their muscles turned on and moving. If you think back to your physics classes one of the things taught was, a body in motion stays in motion. Apply this to kids with Down Syndrome who have low tone muscles, if they can keep their muscles ‘primed’ to a level where it requires less energy to activate them then movement and posture and muscle activation becomes easier and more energy efficient. If they stop and ‘relax’ their muscles after every movement they have to ramp their muscles back up again, resulting in a lot more energy use. This is why we like to work on the strength and endurance of low tone muscles. We want those muscles to work more efficiently for longer periods of time so that the energy demands on the kids are less as a result.

For kids with Down Syndrome to be able to better play with their peers and excel in gross and fine motor skills, they often need to improve the strength, endurance and efficiency of their low tone muscles. To achieve this therapy homework is often given to the kids and their parents. Practice is important because repetition is the best way to build strength and endurance as well as develop skill mastery. As simple as it may sound in theory, this can be a challenge for families because it can seem so overwhelming when you don’t know where to start. I often work with families to help create solutions for parents who are trying to figure out ‘How do you incorporate this at home when you are already juggling multiple therapies, plus your lives, plus any siblings, school and work?’ My general ‘go to’ solution is to work exercises into daily life because the goal for the kids is to integrate the motor skills they are learning so they can use them all day long in their day to day activities.

Below are some practical suggestions and examples you can use to assist with working your child’s physical therapy into your daily life. I have included some ideas that can be applied to specific exercises and milestones as well as some general ideas that can be used by anyone. Hopefully these suggestions will provide you with some ideas that you can build from or talk to your therapist about.

Specific Activities:
• Tummy Time – this is always a big one being stressed by therapists. Often we hear that the kids don’t like it or it’s too challenging. If you start them off on tummy time right away it gets a little easier. Start with having them lie on your chest (think of it as another way to bond with them). This way you can relax while working with your kiddo and admiring how absolutely adorable they are! If you are folding laundry you can have them on their belly on the bed and make it into a game where you are entertaining them with ‘peek-a-boo’ using each new piece of laundry as something to hide behind. Nothing is more entertaining then hearing your child laugh! If its summer and you have the space, invest in a hammock for you and your little one to swing to your heart’s content. Not only can they practice tummy time while lying on you, they also get some vestibular input with all the swinging. If you are sitting in the living room with the rest of the family (or anywhere for that matter) you can use a therapy ball and have them on their belly rolling in all directions while the family is watching TV, reading, or just hanging out.
• Crawling – Once they start to get the hang of crawling you can help them get practice because it’s a great workout for their gluts (butt muscles), their core muscles and their shoulders. If you are all hanging out in the living room, toss some extra pillows on the ground and have them practice crawling over the pillows. It helps if there is a toy that they really like on the other side! Or, if they have to go down a hallway at various periods during the day, make sure you have them crawl whenever you have the time. I know its easier to just pick them up and carry them so they get to their room faster, or to where ever you are heading in a quicker time frame, but for just a few extra minutes you get in some exercise and gross motor skill practice. Especially if you have stairs letting them crawl up the stairs is a great practice and strengthening tool.

Times to Capitalize on During the Day:
• Diaper/clothing changes – Since babies are constantly spitting up or needing a diaper changed, this is a great time to sneak in some extra strengthening. You can work on some sit ups by having them pull to sit using your hands (also great for head control and chin tucks) and then lowering them back down the same way so they can practice holding their muscles strong as they return to lying down. It’s also a great time to sneak in some bridging by having them lift their tush every time you need to scoot something in or out from under their bottoms as well as for pulling up pants or getting some powder in all the right places.
• Post bath time – After your baby’s bath, when you are putting their lotion on is a great time to work on stretching. I know that kids with Down Syndrome are usually excessively flexible; however, if they aren’t moving around as much as other kids they may not be getting their feet into their hands and mouth as soon as we might like. This activity is the baby’s way of stretching their own hamstrings after being scrunched up in the womb for 9 months. You can help your baby out by working on your stretches at this time of their day.

General Ideas:
• Learning a new skill – When your kiddo is first attempting to learn a new skill and your therapist wants you to practice it over and over and over again it’s a little harder to think of ways to fit that into your daily schedule because it requires practice of a specific skill. For instance, commando crawling is hard to ‘fit in’ because it’s hard work learning how to do it. If you try to think of times in your day such as right before bath time, right before eating, or other similar markers in your day, you can use those as times to spend several minutes practicing the new skill.
• Pick your priorities – Another way to make therapy homework manageable at home is to ask your therapist each week what the priority is. For instance, you can ask: ‘If there is only one thing that I can get around to practicing with my kiddo this week, what would you want that to be?’ Then you find out what the high priority exercise is and you can focus on one thing rather than barely getting to ten things.
• Exercise schedule – if you want a few things to work on you can always make an exercise schedule with each of the different therapies and put one activity on each day of the week so that you will only have one activity per discipline each day.

My last piece of advice would be, don’t forget that first and foremost you are your child’s parent. There are going to be days where it all goes according to plan and there are going to be days where it starts with a left turn when your plans specifically called for a right turn. If you think of the fact that you can do physical therapy where ever you are, you will start to notice opportunities for gross motor practice and strengthening all around you. Incorporate active play into your day and you are probably working on a skill that your therapist would approve!

To finish up, I’ll leave you with a quote from the mother of a girl with Down Syndrome. “The best thing you ever told me was that my daughter would crawl, walk, jump, run and ride bikes, it just might take her a little longer and a little more practice to get there but the enjoyment would be that much greater once she learned it.”

Featured Guest Blogger: Stacy Menz, DPT, Board Certified Pediatric Clinical Specialist

Stacy, Starfish Therapies’ founder, is a pediatric physical therapist with both a Masters and a Doctorate in Physical Therapy from Boston University and is a board certified pediatric clinical specialist. She stumbled into this field when she realized she would get to play with kids all day long! In reality, she loves making a difference in the lives of kids and their families. In addition to doing rehabilitative work with kids, she also promotes overall wellness and prevention of developmental delays through education. Stacy is actively involved in her professional organizations and is on the editorial board of Impact, the publication of the Private Practice Section of the APTA, and serves on the education committee of the Pediatric Special Interest Group for the California Physical Therapy Association. Stacy and her colleagues are also actively involved in research and have an article submitted for publication.

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Tags: PT Down Syndrome Newsletter 3 February 2012