This seems right, why wouldn’t we want our child to sit or stand or walk within a reasonable time frame? 

The answer is neurodevelopment. 

We should not be concerned with what and when… We should divert all our energy into HOW.

What good is excellent sitting ability if our child has no way of getting in or out of the position? Or, even worse, if the child gets into the position the neurologically incorrect way? 

This begins with mindset. Many traditional Early Intervention therapists see poor movement patterns as “part of DS.” Although butt-scooting, bear crawling, and flipping over widely split legs may be adorable, it is 100% neurodevelopmentally unacceptable.

The brain grows through inputs. Each time your child spreads her legs wide to flip up and over into sitting, the brain receives that input and produces all processing and motor planning (praxis) based on that input. Know why baby does this? Because she has no midline orientation…her visualmotor, sensorimotor and reflex systems are not neurologically organized. And, if we do not spend consistent effort to help her orient to and cross midline, everything – literally for the rest of her life- will be based on this innaccurate neurological wiring.

5 Impactful Pieces for a Neurodevelopmental Action Plan

1. The Developmental Sequence – All OT’s and PT’s are educated explicitly on the proper developmental sequence. Proper movement patterns during development are critical for walking, running, processing, reading, handwriting, learning, etc., later on. Do not allow the limit-based mindset of “Many kids with DS move that way,” to direct your efforts. Demand proper movement patterns and integration. The milestones may take longer to achieve, but it really doesn’t matter when they happen, what matters is how they happen.

And, this demand for proper movement is not just during therapy, it is any time our children are on the floor playing. It may be tedious to continually assist our children to move into and out of positions appropriately, but with consistent insistence, it will become automatic.

2. Crossing Midline – our kids live in midline. They will butt scoot (forward motion), pull themselves straight up (instead of rotating trunk to get into 1/2 kneel), bear crawl (because reflexes are hanging around and they have no idea where their feet are), stand with extended and widely spread legs (again, reflexes and sensorimotor integration), and many other things “commonly seen in DS.”

All proper movement patterns and motor plans (praxis) are predicated upon crossing midline. If your child isn’t crawling in perfect 4 pt crawl on hands and knees with head sway, your child’s sensorimotor and visualmotor systems are not integrated. It is NOT OK to skip crawling. (Just a side, I think this pervasive idea for any child is dangerous and correlates to poor reading abilities we are seeing in the statistics.)

3. The Floor – Jumpers, bouncers, pack-n-plays, swings, carriers, chairs, BE GONE! The most impactful thing you can do to begin the process of sensorimotor, visualmotor, and reflex integration is to allow the child to live on the floor. The continual pull of gravity and friction to the belly side of baby is neurointegrative…it floods the system with proprioception (pressure and position sense), creates shoulder stability when pushing up, integrates reflexes through various weight-bearing on upper extremities and various head positions, brings the visual motor system into the 3rd dimension and integrates with the Vestibular system (sense of movement), and so…SO much more.

Aside from the integrating power of the floor, there is the epigenetic input of expectation. Let’s face it, moving is hard for a baby with lower muscle-tone moving against gravity and friction while being under the influence of primitive reflexes and poor body control. I know if it were me – I would definitely choose to sit in a swing and be entertained. This is an input…the brain learns that if the child just sits there long enough there will be a reward. This is the root of what we see when our children are older and refuse to do things for themselves, or are reluctant to try new things, or are content to sit in front of screens for hours. (Don’t get me started on screens.)

Putting the baby on the floor as a way of life inputs and reinforces the idea that the child is in control, is the master of their universe, and is motivated to seek things out independently. The child habituates the fact that if they want it, they can get it. It fosters curiosity and independence. Pair this with the neurointegrative inputs, there is nothing more impactful to proper neurodevelopment.

4. Position

There are certainly times when baby needs to be in the carrier, high chair, stroller, or crib. Neurologically, resting is when our brains integrate all we learned while we were awake. Physically, this is time to relax, but we all know what happens when our babies are laying down or sitting. Widely spread legs that are externally rotated. “Ring sit.” This must consistently be monitorred and addressed.

Having a system for proper position that becomes second nature is key. Extra towels in the diaper bag for strollers, shopping carts, or carriers to roll alongside the legs to keep them together. In the case of the carrier, a small roll can also be placed under the baby’s knees to promote flexion.

Safety pinning or sewing the legs together of a snug sleeper is ideal for sleep positions. This way everytime baby kicks he is automatically kicking with hips flexed. 

Be creative every time your child is not on the floor playing. The hip sockets form in response to movements and pressures of the legs during the first year or so. If the femoral head (anatomical structure at the top of the femur that is the “ball” for the “socket”) is not providing the proper input, the socket will not form properly. We might see a wide base of support with “waddling” gait later, or worst of all, hip dislocations because of shallow socket. Position, position, position.

5. Mindset – We can be incredibly motivated to influence proper development for our children, but if we aren’t aware our our own limiting ideas, we will not be effective.

Ask yourself these questions:

• Do I accept that my child’s movements will look different from neurotypical development because he or she has DS?
• Do I believe that because DS is chromosomal there isn’t much I can do to change it?
• Do I believe that there is a wide range of abilities of children with DS and it is a fixed state that can’t be influenced or changed because of the extra chromosome?
• Do I believe accepting my child is synonymous with accepting limitations?
• Do I believe children with DS will be “high” or “low” functioning based on genetic make-up?

Changing Mindsets changes Lives, consider:

• How can I influence inputs to the brain so movement and motor plans become neurodevelopmentally appropriate?
• How can I use the principles of epigenetics (field of study that shows environmental inputs turn on or off gene expression) to create environments of true change for my child?
• What other inputs can influence development?
• I can accept anything that is authentically my child, but accepting limitations placed on their development and future that hasn’t happened yet is not acceptable. I embrace neuroplasticity (the ability for the brain to grow and change based on inputs) and can find many ways to incorporate them into daily, joyful, life.
• High and Low functioning are labels placed on children based on historical ideas of standardized tests, traditional delay-based models of development and education, and outdated science. I reject them and will wonder how to influence proper integration and development for my child.