Working with a child with Down syndrome was always both fun and frustrating. It was fun because the child could be filled with a sense of mischief and adventure, and frustrating because every Down syndrome child I ever worked with was as stubborn as could be. Now, I am not saying all Down syndrome children are stubborn, but it is true that stubbornness is often a characteristic of the disorder. And it is that stubbornness which can be a help or a hindrance toward their development.
Children with Down syndrome have both cognitive and physical challenges to overcome.
Physically, they have certain characteristics which directly impact their gross and fine motor development. They tend to be low tone, and also have joint laxity. This means that reflexes tend to be slower, muscle strength is decreased and postural stability is harder to sustain. I have worked with children who could lie on their tummy, slide their legs along the floor toward their head, and then push up into a sitting position. They could do this because their joints are so loose. I have discussed these issues in my blog about low tone. Also, instead of the three hand creases which define the arches and help with fine motor skills, they have only one crease. That means that fine motor skills are more difficult to execute.
And children with Down syndrome have a cognitive disability. It can range from mild to severe. Most children’s impairment falls in to the mild to moderate range.
What happens when they are very young is that the combination of these characteristics and traits make them challenging to work with. I have discussed in other posts how low tone and joint laxity can make a baby feel insecure and afraid to move. This is magnified when the child has a cognitive impairment as well. Cause and effect are the motivators for babies. That is how they learn. When a baby kicks a toy in their crib and the toy starts playing a song, the baby figures out that kicking gets a reward. They learn cause and effect. In children with a cognitive disability, that connection is not made as quickly. And the fact that kicking may require more strength than they have, or cause them to fatigue, will prevent them from doing it again. What’s more is that the child will get comfortable with their current level of functioning and stubbornly refuse to push themselves. It is a catch-22 if ever there was one.
The saving factor of all this is that children with Down syndrome tend to be good-natured and happy and willing to have fun, even as early as a few months of age. The key to successful therapy is to make the “work” fun, so the baby will want to engage every session. I highly recommend the ball exercises for infants and toddlers, and the core strength exercises for preschoolers on up. When working with the baby on the ball, you can bounce them up and down and play peek-a-boo games as you move them through the exercises. I used to do an exercise, and then bounce the child, and then move on to another exercise. This way, there was always a fun reward after an exercise that might be challenging.
It is extremely important to help your child gain strength and postural stability.
This will give them the foundation for performing activities of daily living such as dressing independently, feeding and other skills. It also goes a long way toward helping them to blend with their peers. Unfortunately, walking and moving in a clumsy fashion can alert others to take note and makes the child stand out. If you can get your child physically strong they will walk better and move more fluidly.
Another important issue, and the reason I brought up the stubbornness trait, is behavior. Children with Down syndrome are regarded as prone to outbursts and strange, often compulsive behavior.
And they don’t always understand socially acceptable behavior. When they get older and start experiencing physical changes, they often don’t understand not to explore the change in public. One little sixth grade girl I treated had a habit of touching herself during class time. Her other therapist s and I would try to explain why she shouldn’t do it, but she had a hard time resisting the urge. Behavior guidelines and specific rules should be started as early as possible. So many times I would be working with a child whose family thought everything the child did was hysterical. I came to understand that the family’s expectations for the child were lower than it was for their other children. And they often felt pity for the child. I would do my best to explain that what was cute for a 3 year old was not cute when it was done by a 10 year old. Please remember that children with Down syndrome can be very repetitive and it is hard to break their habits. Add to that the stubborn factor, and it is easy for the silly 3 year old to become the 10 year old still acting like the 3 year old. Just as with the physical traits, behavioral traits can make the child with Down syndrome stand out. We know that children can be mean spirited. You don’t want your child to become the object of ridicule by other children.
I think the single most important advice I ever gave to parents was that they should always expect 100% from their child. Setting a lower expectation meant there was no chance of reaching their absolute potential.
If you are satisfied with 70%, it’s possible you’ll only get 50. But who knows how much you’ll get if you expect the maximum? A child with Down syndrome needs a lot of exercise focusing on core strength and hand development. They also need structure and routine. And they definitely need strict guidelines for acceptable behavior. As a parent you can work with a good behavior program which includes visual charts and a reward system. By providing good therapy, and helping your child to follow rules as you would for a “normal” (I hate that word) child, you will be surprised at how much your child can progress. Children with Down syndrome can attend regular class, and it is not unheard of for them to go to college. The foundation you lay down when they are young can help them to reach their full potential.