Einstein Syndrome: Down Syndrome with a Positive Attitude

I read this one often, especially on the blogs of the new mothers, “Children with Down syndrome learn everything any other child learns, just in their own time!” There is a reason that this hope-filled statement is not made by parents of teens and adults with DS. We know it isn’t true.

Now, I’m all in favor of high expectations. But those high expectations need to come with a healthy dose of reality. Early intervention, as it is currently practiced, doesn’t cut it. The reality is that a child with Down syndrome will not learn everything that any other child will learn, not unless there is specific, targeted neurodevelopmental input, and specific targeted metabolic input. Even then it is an uphill battle.

Think about it this way.  I have a son with the potential to become an Olympic quality runner. He is good, and fast. But just waiting for “his own time” will not be enough for him to reach that level. Instead, he will need years of practice and targeted coaching. Since he has never pursued this training, he cannot expect Olympic quality.

In your son with Down syndrome, normal function would be an Olympic achievement. It will not happen “in his own time.” But normal function is possible in many areas with the right input and coaching.

Use these early years in your child’s life to lay the groundwork for the later accomplishments. In what follows, I’ll tell you what I consider to be the most important early therapies to build toward normal function.

Cross Pattern Crawling and Creeping

Don’t be hesitant to teach your child to crawl and creep. Months of good, cross-pattern creeping is a prerequisite for a normal gait in walking and running.

The period of cross-pattern creeping is an important developmental stage. During this stage, the lower regions of the brain are prepared for higher level neuro-organization. The eyes learn to converge at this stage. When the baby is crawling on his tummy, his eyes learn to process separately, one at a time. When on his hands and knees, his eyes learn to work together. Hip sockets are developed by the process of crawling. The trunk, shoulders and arms are made strong and stable in preparation for fine-motor tasks like writing. The large muscles of the gluts and quads are strengthened so that the gait is the normal knee lift instead of the stereotypical shuffle of Down syndrome. During tummy crawling a number of baby reflexes are integrated and suppressed to make way for adult reflexes.

Patterning: If your son is not yet doing a smooth cross-pattern tummy crawl, teach him. The neurodevelopmentalists call this “patterning.” You actually move his arms and legs in the rhythmic, alternate motion that is used in cross-crawling. You, yourself, can take the initiative to build these cross-pattern pathways in his brain.  For information on how, exactly, to do this, your best source will be trained neurodevelopmentalists at IAHP, or NACD, or ICAN, or a parent who was trained by one of these organizations.

This video demonstrates cross-patterning with a child.  Notice these things:  When the left arm is forward, the right leg is forward.  When the right arm is forward, the left leg is forward.  The head is turned toward the forward hand.  (The three-man patterning is optimal, but it can be done with just the arms and legs, without moving the head.)  Notice also near the end of the video  how the foot and ankle are turned.  When the knee is forward, the toes on that foot are are outward.  When the leg is extended, the heal is outward.  In addition notice how the palm and foot are in contact with the table throughout the movements.

With my daughter, we got excellent results doing the cross patterning for five minutes, twice a day.  We only did the two-man patterning, just my husband and me moving Mary’s arms and legs.

When your son has a good tummy-crawl, you can teach him to support his weight on hands and knees and finally to creep on his  hands and knees.

Some babies are taught to sit and from this sitting posture they learn to scoot on their bottoms.  Don’t allow scooting.  Scooting will bypass all the normal development that happens during the crawling/creeping stage.  Sitting is great for stability in a high chair  for feeding. It is great for stability on your hip for carrying him.  But for floor play time, don’t focus on sitting.  Instead, put your baby on his tummy to encourage attempts at movement.

Help your child get into the crawling and creeping stage. Once he is able to go places on his own, resist carrying him.  Give him abundant time on the floor to practice this crawling skill.  All those great developmental pieces are coming into place during these months on hands and knees.  Don’t hurry into walking.   You’ll know when the crawling stage is completed because a child who has been crawling long enough generally doesn’t take much pushing to go to walking. He is ready.

Deep Pressure

Proprioception is the brain’s awareness of where the body is in space. While you keep looking at your computer screen,  feel mentally through your body. Do you know where your big toe is? How about the position of your left knee? Even without moving them, you probably had no difficulty knowing exactly the position of those body parts. That awareness is proprioception.

This sense is the result of sensors deep in the muscle near the bone sending signals to the brain. People with DS typically have poor proprioception. They have very little deep sensation. This results in clumsiness, in difficulty walking, in hesitance to run without looking at their feet, poor fine motor control, and in low pain sensation.

Building good deep sensation is foundational to almost everything else that we want to teach our kids to do with their bodies. It is accomplished through regular, daily, deep pressure. Kids with DS don’t learn it on their own. Use your baby’s early months and years to build good proprioception through deep pressure.

How to do deep pressure: Take your son’s hand in yours.  Begin at a fingertip and do a deep squeeze for about five seconds on each knuckle.  Follow that bone up to his wrist, squeezing as you go.  Then move to the next fingertip and repeat.  Squeeze, hold about five seconds, move up the finger.   This is not a massage—hold and squeeze.   Hold the squeeze deep enough and long enough to get an awareness reaction. You want to go almost—but not quite—to the point of pain. Parents should try this on each other and on their other children to know how deep to squeeze before reaching a normal pain response. You may have to squeeze harder with your child with Down syndrome to get any response at all. Continue the deep pressure squeezes at the wrist and up the arm. Then switch to the other hand and arm. Finally, work your way up each leg, from the toes to the ankle, to the thigh.

The entire process should take about five minutes. Repeat the deep pressure activity two or more times each day. In my family, diaper changing time was a good time for this.

Build the deep pressure time into the fabric of your day. The time spent now will pay dividends later in gross motor and fine motor successes.

Use that Feeding Time for Muscle Building

Of all the things that I have learned over the years, early oral-motor feeding  is the one I most regret not knowing when Mary was a baby.

Speech involves fine control of individual muscles in the face, tongue, lips and jaw. Yet, until the baby starts speaking not much can be done to work those muscles, right? Wrong!

Every time you feed your baby, either bottle or spoon feeding, you are guiding him to exercise those mouth muscles. You are either teaching him to use them in ways which will hamper him in speech, or your are training him to use them in ways which pave the way for clear speech.  For example, suppose you have a bowl of cereal to feed your son.  You put some on a spoon.  How to you empty the spoon and get the cereal into his mouth?  Well, if you are like most parents, you scrape the spoon on the upper gum.  The normal baby response is to take his tongue and thrust it forward against that food.  So, with every bite, you reinforce tongue thrust! Hmm, probably not want you want.

Instead, the folks at TalkTools have developed some simple techniques to use the feeding time to reinforce correct tongue and lip movements for later speech clarity.

This DVD workshop by Lori Overland will teach you how. Developing Oral-Motor and Feeding Skills in the Down Syndrome Population. For the cost of just a few therapy appointments, you will get the techniques to simply change the way to feed your baby and thereby build the muscle skill and muscle memory for speech clarity.

For me, I did not know these things until Mary was already about ten years old. By then she had well established speech patterns built on incorrect muscle movements. For Mary, achieving speech clarity means unlearning years of incorrect practice.

It doesn’t have to be that way for you. Don’t wait for your baby to learn to talk in his own time. Begin with a systematic method to build those muscles for speech now.

Develop Language Systematically

There is one more area where I encourage you not to wait for your child’s own time. But that area is big enough for a separate section of its own—the area of language development.

Filed under: Down Syndrome, attitudes, development, interventions, oral motor | Tagged: crawling, creeping, early intervention, IAHP, NACD, oral motor, patterning