As new parents of a child with Down syndrome, you already have your hands full just trying to get acclimated to this new country, to obtain the correct guidebooks and learn a few words of Dutch. Therefore, you are understandably skeptical when someone suggests that one of the new people you should meet is a physical therapist. They are recommending that you start your new infant in regular physical therapy. Why physical therapy? Don't children with Down syndrome learn to walk and run, just like other children do?
The purpose of this article is to answer that very question. Why indeed would you invest your time and money in physical therapy? After all, you are quite right; children with Down syndrome will learn to walk, run and jump. It will take a little longer than it does a typical child, but the goals will be achieved. Typical children walk at around 12 months of age, and the average child with Down syndrome walks at about 24 months of age. And on top of that, physical therapy is not going to accelerate your child's rate of gross motor development. With or without therapy, the average child with Down syndrome is still going to walk at about 24 months of age. So now that I've just about convinced you that physical therapy isn't worth your time and money, let me say that physical therapy is one of the most important services that the child with Down syndrome will receive in the early intervention period, and it is during this time that physical therapy will have the greatest impact. Let me explain some of the reasons that I recommend it.
There are 4 factors which will have an impact on the gross motor development of a child with Down syndrome:
- Hypotonia: Tone refers to the tension in a muscle in its resting state. The amount of tone is controlled by the brain. Hypotonia means that tone is decreased. It is most easily observed in children with Down syndrome when they are infants. When you pick up a baby with Down syndrome, you will notice that he feels "floppy" or somewhat like a rag doll. If you put him on his back, his head will turn to the side, his arms will fall away from his body and rest on the surface, and his legs will fall open. This floppiness is due to hypotonia. Hypotonia affects each child with Down syndrome to a different degree. In some, the effect is mild and in others, it is more pronounced. Although hypotonia diminishes somewhat over time, it still persists throughout life. Hypotonia will make it more difficult to learn certain gross motor skills. For instance, hypotonia of the stomach muscles will make it more difficult to learn to balance in standing. To compensate for this, children with Down syndrome, when learning to stand at the coffee table, will tend to lean against the table for support.
- Ligamentous laxity: Children with Down syndrome also have increased flexibility in their joints. This is because the ligaments that hold the bones together have more slack than is usual. Ligamentous laxity is particularly noticeable in the hips of infants with Down syndrome. When lying on his back, the legs of an infant with Down syndrome will tend to be positioned with his hips and knees bent and his knees wide apart. Later you will notice it in your child's feet. You will notice that when standing, his feet are flat, and he does not have an arch. This increased flexibility tends to make the joints less stable, and it is, therefore, more difficult to learn to balance on them.
- Decreased strength: Children with Down syndrome have decreased muscle strength. Strength can be greatly improved, however, through repetition and practice. Increasing muscle strength is important because otherwise, children with Down syndrome tend to compensate for their weakness by using movements that are easier in the short run, but detrimental in the long run. For example, your child may want to stand, but because of weakness in his trunk and legs, he can only do so if he stiffens his knees. You will be able to help him develop the strength he needs so that he can stand properly without locking his knees.
- Short arms and legs: The arms and legs of children with Down syndrome are short relative to the length of their trunks. The shortness of their arms makes it more difficult to learn sitting because they cannot prop on their arms unless they lean forward. When they fall to the side, they have to fall farther before they are able to catch themselves with their arms. The shortness of their legs makes it harder to learn to climb since the height of the sofa or stairs presents more of an obstacle.
The purpose of physical therapy is not to accelerate the rate at which the child with Down syndrome achieves his gross motor milestones. It is to help the child avoid developing abnormal compensatory movement patterns that are common ways of adjusting for the four factors we have discussed. You can predict with near certainty that children with Down syndrome who do not receive physical therapy will develop the following compensatory movement patterns:
- Standing and walking with their hips in external rotation, knees stiff, feet flat and turned out
- Sitting with their trunk rounded and pelvis tilted back
- Standing with a lordosis (stomach out and back arched)
These patterns are likely to result in orthopedic problems in adolescence and adulthood that will impair physical functioning. These problems can be avoided by proactively teaching optimal movement patterns so that strength is developed in the appropriate muscles.
Besides preventing the development of abnormal compensatory movements, there is an additional opportunity that can be realized by the parent and child during physical therapy. The mastery of gross motor development is the first arena in which your child will take on the challenges of life. Fine motor development, speech and education are all challenges that lie ahead, but gross motor development: rolling over, sitting, crawling and walking are the first challenges he will meet in life. Additionally, gross motor skills will be an area of strength for him. The opportunity is for the two of you to learn how to work together in meeting and overcoming the challenges. It is the opportunity for you to begin to learn how he learns. For instance, you are likely to find that he does best when information is presented in small, easily digested bites. You will discover whether he is a risk taker or someone who needs to proceed at a slower and more careful pace. You will find that motivation is a key component to getting his best perfomance. What the two of you learn in meeting the challenge of gross motor development can provide you with a model for how to meet the other challenges that lie ahead in other areas.
Physical therapy services can be accessed through the Early Intervention Program in your area. In 1975, President Ford signed into law PL 94-142, the Education of the Handicapped Act (EHA). The law was amended in 1986 to establish the Handicapped Infants and Toddlers Program (Part H), which provided for services for children from birth to their third birthday. Further amendments in 1990 and 1991 changed the name of the law to the Individuals with Disabilities Education Act (IDEA) and Part H became known as the Early Intervention Program for Infants and Toddlers with Disabilities. States use the law as a guideline for developing policies for providing services to infants and toddlers. Exactly how those services are provided and through what agencies varies from state to state.
In choosing a physical therapist, you want one who has pediatric experience. This gives them knowledge about how children develop gross motor skills. You also want a physical therapist that has experience treating children with Down syndrome and understands the abnormal compensatory movements that they are prone to develop. Once the child with Down syndrome has learned to walk, you will use the post walking skills to refine his walking pattern (i.e. a narrow base with feet pointing straight ahead). At this point, you will want to access community recreation programs like Gymboree, dance, gymnastics, adapted physical education programs or any other program that develops strength, balance, speed and endurance.
Once your child has mastered the basic gross motor skills, your attention will necessarily and appropriately be drawn to other areas, such as speech and language and school performance. Still, you want physical exercise to become an integral and enjoyable part of your child's day-to-day life. A sedentary lifestyle has negative consequences for anyone, but more so for a person with Down syndrome.
If you want additional information, my book, Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals, provides you with step-by-step instructions to facilitate the development of gross motor skills. The book is available through Woodbine House (800) 843-7323 www.woodbinehouse.com