Down Syndrome: A Day to Day Guide: Neurodevelopment

Many kinds of therapies exist for those with T21. You most likely have heard of Physical Therapy, Speech Therapy and Occupational Therapy, which are usually provided (in the US) through a free program called Early Intervention or EI.

I do not think EI is adequate at all. Neurodevelopmental Therapy, NDT, is what has most benefited Jett. There are two other therapies which I think are valuable to our children called MNRI and ABM.

What is NDT?

Very simply, we learn from information gathered through our senses (sight, touch, hearing, taste and smell). Sensation issues are the cause of many learning delays and delays in gross and fine motor progress. NDT uncovers and addresses senses that may be impaired so your child can learn more easily.

NDT also focuses on overall neurological organization by breaking down and mimicking developmental steps and taking advantage of neuroplasticity (the ability of the brain to grow). Specific stimulation, through NDT exercises, can help rewire and change the central nervous system (the brain) to function more efficiently.

I believe Jett's NDT program, in conjunction with supplementation (to help with cognition, memory, overall health and function), has been key to his success. He has been involved in some form of NDT exercises (of my own design from research,) since he was born. At 8 months old, I found a great neurodevelopmentalist, Kay Ness, from ICAN who evaluated him and designed a program to meet his specific needs.

Most new parents "on program" are overwhelmed by the amount of time it takes, but for me, the opposite was true. Through Kay's guidance, the hodge-podge program I designed to cover all the bases was refined and distilled to save time and energy so that I could concentrate on exactly what he needs to help him progress. He gets reevaluated and starts a new program every three months. When I fill out the monthly reports (admittedly rarely on time), I am amazed at his progress. Every little bit counts: every tactile squeeze, every utterance you parrot, every effort you give adds up to big rewards in the end. Yes, NDT costs money (a little over $100 a month) and takes time. But you can read the recommended books and posts and do what you can for free as well. It's quite a time consuming commitment, but your child is worth it!

Here is an explanation from How Neurodevelopmental Programs Can Improve Function by Marilee Nicoll Coots, BA, Neurodevelopmentalist at ICAN. Original article can be found at I Can Do Articles. I added the italics and words in brackets.

There are several groups of neurodevelopmentalists, but they generally agree on the [same] concept as a whole: They consider function to be [a] reflection of neurological organization.

[So, if you can fix your child's "neurological organization," you can help your child function better.]

They believe that the function or lack of function, which we observe in people with T21 is rooted in the development of the brain and nervous system: neurodevelopment. When there are developmental inefficiencies, we see a lack of function and therefore, a symptom. These symptoms reflect neurological disorganization. As neurological organization improves, development progresses and we see an improvement in function. So if we can cause development to progress we will see a change in function and improvement in the symptoms.

Neurodevelopmentalists have discovered that developmental changes can be accomplished by appropriate stimulation. To be effective, that stimulation needs to be delivered with high intensity, high frequency and short duration. It also needs to be applied over a long enough period of time for the changes to occur.

Through using specific activities with many children, neurodevelopmentalists have learned which activities work best to specifically address the various developmental levels and cause neurodevelopment to progress to greater degrees of organization. Many of these specific activities have been drawn eclectically from other disciplines, tested and refined. Neurodevelopmentalists assess children to determine the inefficiencies underlying the symptoms, design a ...program of specific activities to address those inefficiencies and train the parents to carry out the activities at home. This approach, properly applied, has been successful in eliminating many of the symptoms which have kept children from educational achievement.

Common question: Since my child is already in PT (physical therapy) and speech, what more can neurodevelopment add?

From what I've seen PT's do, they don't seem to understand and address our children's underlying causes for delays. Often, the exercises that they have our children preform put them into positions that cause harm and do not support proper development by skipping steps and by forcing gross motor skills before the child's body is physically ready. If you read the post called Crawling: More Important than Sitting or Standing!, for instance, you'll get one example of the differences.

A lot of the kids I've seen that have gone through PT alone rather than ND, unfortunately walk and crawl incorrectly, have incorrectly developed hips, low arches and sometimes even bowed legs. The kids I've seen that have gone through ND instead, move in natural, fluid motions and have more typically developed shape in their feet and legs. Overall, they have better motor planning skills.

When I felt that Jett's bone structure and muscle strength was sufficient, I allowed a PT in my home to work with him. Every little bit helps and I feel comfortable that he is past the stage where permanent harm could be done to him. The 30 minutes once a week is of course inadequate, but I appreciate the time his PT takes with him to get him active and moving in creative ways.

And speech--most STs go about it all the wrong way and/or only address a few aspects of speech. Many don't even consider the oral motor aspect and many use incorrect communication practices -- ones that hinder rather than support verbal progress. See the post called Getting Your Baby to Communicate to better understand all the different pieces that must come together to support proper speech. That being said, I'm sure there are some PTs and speech therapists out there who are stellar. It's the overall education and methods of the therapists that I'm aware of that are not as successful with our children. I do have a recent study that says that EI isn't successful for our kids. I can email it to you if you'd like.

Another great thing about ND over PT is that you get trained to do it yourself so your child will get therapy every single day (or as much as you can) rather than once a week or less.

These links will help guide you in your ND journey

Find a Neurodevelopmentalist
NACD Articles on Neurodevelopment
ICAN Articles on Neurodevelopment

Videos about ND Programs

Free audio seminar on ND by Kay Ness.
NACD (The National Association for Child Development) has a YouTube channel where they post neurodevelopmental videos, located here: NACD YouTube Channel
Sequential Processing and Alternative Treatment Methods by Neurodevelopmentalist, Alison Wimmer.

Books

Children of Dreams, Children of Hope by Raymundo Veras. This book is great for inspiration--a good place to start!
How to Teach Your Baby to Be Physically Superb : Birth to Age Six A plan of action to start treating your baby right away. (How Smart is Your Baby? or the updated version called Fit Baby also by the Domans, is highly recommended as well. In fact, many people suggest you begin with it. My library didn't have that one so you'll have to see for yourself.)
How to Multiply Your Baby's Intelligence by Glenn Doman and Janet Doman Has some of the same information as How to Teach Your Baby to Be Physically Superb, but is different. You may want to look through them both and decide whether or not to get them both. My local library had both and I read them together, so I can't remember off hand the differences.
What To Do About Your Brain-Injured Child by Glenn Doman If you are action-oriented, you can read this one later. But if you want to better understand the theory behind the Doman methods in order to get motivated, read it sooner. Would be a good companion to read while you work with How to Teach Your Baby to Be Physically Superb. Okay to get from the library rather than purchase, one read should be enough.

Quick Start Therapy/Neurodevelopment Program

Benefits and Methods of Massaging Your Baby
Keeping Nasal Passages Clear & Mouths Closed
Tummy Time
Getting Your Baby to Communicate
Books to Read to Your Baby
Deep Pressure Tactile Therapy
Low Muscle Tone: What to Do
Oral Motor Therapy from the Bits of Real Life Blog (has "lively" language)
Improve Your Child's Vision
Games for Baby: Grasping Skills
Teaching Your Baby to Crawl
Crawling: More Important than Sitting or Standing
Teaching Your Baby to Read (You can start at 8-12 months of age depending on how well s/he can see, but you'll need a couple of months to prepare.)
My Strategy for Good Behavior
Teach Your Baby Math and Teaching Your Young Child Math
Handwriting Resources
Once your child is 4-point crawling/creeping, check out Walking and Children with Down Syndrome.

How do you find time for ND?

You just learn to incorporate the exercises into your daily life, one at a time, and you eventually don't even notice it. Deep tissue massage while watching TV or reading… quick rhythm movements before each diaper change… using the bar to pull up after each diaper change... flashing five word cards before each meal... Reading the best books, the correct way at bed time... Listening to certain music in the car… Doing eye exercises while your child is on the potty… Bath time activities that support your program...

Mostly, play is just more purposeful-- you're still playing ball, swinging them, goofing around, but you just know more about how to maximize your time with him. You basically learn to optimize each verbal and nonverbal interaction. Jett has loved every single exercise (most immediately, some eventually). I'll sometimes find him doing it on his own. (The other day he was standing against the couch and trying to count to 100--and giggling the whole time since I tickle him at every "ten.")

In the post, A Day in the Life from Sue Mayer's Blog, this dedicated mom shares how her ND program works for her as well as great tips for you.

Support during your NDT journey

You can get a lot of support from parents of (usually) young children who do NDT, at Baby Center's Unlimited Potential.

ICAN has a listserv that you'll have access to if you work through them.

Neurodevelopment Posts in Categories

Starting at the Basics

Gross Motor Skills

Physical activity helps to mold the structure of our brains, according to John D. Polk, an associate professor of anthropology at the University of Illinois at Urbana-Champaign. It's during exercise that high levels of substances that promote tissue growth and health, including a protein called brain-derived neurotrophic factor, or BDNF is created. These substances are are known to drive brain growth. Read more.

Fine Motor Skills

Life Skills

Sensory/Stimulation Issues

What can you do about rocking, spinning, arm flapping and pacing, etc? This post is not exactly ND, but it would be great to implement if needed (especially if you can replace the suggestions with non plastic items.)

Education