The most effective thing my husband and I did when our daughter was a baby was to enroll her in a neurodevelopmental (ND) program in her first months of life. Prior to this, we investigated the options offered by our state, and we did not like them.
Early Intervention was offered. It involved either enrolling my baby in a day care program where therapists would work with her for a few hours a week. Or, it involved having therapists into my home where they would work with my baby. In both of these options someone else worked with my baby. The work they would do was just a few hours a week at best. And this left me with the whole rest of Mary’s life and not knowing what to do.
My overwhelming impression of the Early Intervention program was their pervasive low expectations. What I was shown were a bunch of nifty-cool coping techniques that they would teach my daughter. Without even trying to see if she could achieve normal function, they already relegated her to a life of second best.
Then I called the staff at NACD, an organization which promotes a neurodevelopmental (ND) approach. What a breath of fresh air! The lady I talked to said, “We have our DS kids reading at age three all the time.”* She was the first person I talked to in Mary’s first months who did not express sympathy. She had a positive attitude; she had a plan.
I was skeptical. So I called parent references. Over and over again I heard something like this, “They told me he would never [fill in the blank], but now, he is doing all that and [description of new skills never dreamed of].”
So we enrolled Mary. It was expensive. And because it was out of the mainstream we paid out-of-pocket. My advice to new parents is to spend the college fund now.
[Off-topic rant follows. Skip this paragraph if you are offended by rants. The most effective approaches we have used with our daughter over sixteen years have not been paid for by insurance or by government programs. I think there is a reason for this. Insurance-paid and government-paid interventions do not have to work to keep the paychecks coming. Therefore there is little incentive to adapt to the most effective methods. Actually there is a reverse incentive: if the kids graduate out of the program, the client base dries up. In the privately funded programs, the experts only get paid if the parents see continuing positive results. The incentives reward results instead of the status quo.]
Mary continued with NACD and then later with our same neurodevelopmentalist at the newly formed ICAN for at least ten years, and then sporadically since then.
The typical therapist looks at some subset of your child and checks to see if one of the techniques in her bag can be applied. If your child doesn’t progress, it is not the therapists’ fault in their opinion, it is your child’s fault. Not so with ND. The evaluator looks at your whole child. The evaluator brings the best of all the therapeutic branches, both mainstream and alternative, and chooses therapies to recommend from all areas of development (fine and gross motor, auditory/visual, tactility, oral, verbal, etc.). If your child doesn’t progress, it isn’t the child’s fault, it is the fault of the evaluator who hasn’t found the solution yet.
One big advantage of the ND approach is the network. The neurodevelopmentalist at ICAN (ND) is in touch with colleagues who have worked with thousands of kids the schools have given up on. Oh, the children may be still in the school, but the school no longer has pretensions of overcoming the learning challenges. The parents of the ND clientele are go-getters, researching and trying the most promising ideas. So, the ND evaluator has a pipeline of information of which new therapies work and which don’t.
For example, right now in the Down syndrome community there is a controversial new therapy using an easily prescribed drug. The therapy promises to stimulate growth of new brain cells. New therapies for DS are a dime a dozen and most are junk. But, because the ND’s are working with so many parents, they are getting breaking news of the efficacy and side-effects of this therapy. Clinical trials on this type of stuff cost millions, and for DS will probably never be done. But, families who are working within the ND network have the info.
The ND professional relays that information, both good and bad, to other families who can take it to their own pediatricians to evaluate and maybe try. Meanwhile the ND evaluator follows the kids developmentally, and provides testing and constantly updated developmental advice.
The neurodevelopmentalist works from a developmental profile which is the core of the ND approach. This profile looks at the natural development of the brain, the “very good” design, which starts with the collection of unconnected neurons at birth, and progresses to the highly connected and organized system of neurons we have at maturity. This means that the ND approach puts you right within that “very good” design. The sensory input that the brain receives naturally is what causes the neurons to organize and moves the normal brain through these developmental stages.
But sometimes something stops this normal, natural progression of neurological organization. It may be a birth injury. Or some chemical exposure, or some chromosomal defect. Whatever it is, it halts or distorts the natural development of the brain.
The organizations of ICAN and NACD tap in to 50 years of work using specific, targeted sensory input to overcome the blockages where development has stalled. At an ND evaluation, the evaluator would determine how far the neurological organization has gone for a child in each of the major developmental areas. For example, Kay Ness is the ND who comes to my area. She looks at everything from prenatal reflexes all the way to the advanced skills of the multi-lingual, manually-skilled marathon runner. Based on her extensive pre-evaluation questionnaire (with lots of questions about medical, developmental, and educational history), she will look for potential causes of those developmental blockages.
Then Kay would write an educational/developmental program for you to do at home. The program will target specific input for the next steps of brain development. You will be trained to do the program. It is likely that you will also receive recommendations to pursue with your pediatrician, (maybe suggested blood work, or a medical test), or a recommendation of a lifestyle or dietary change to investigate.
What ND offers is a way of looking at the whole child with hope. ND looks at the design of our brains, and works within that design. ND recognizes that the parents are the final experts on their own children, and will equip you with the tools to help your child.
*(Teaching preschoolers with DS to read is now accepted by innovative teachers and therapists. In 1992, when Mary was born, it was unheard of, except by rare educators who worked within the ND model.)
This post is part of a series begun here, the Top 15 Things New Parents should Know
Filed under: development, Down Syndrome, interventions | Tagged: Down Syndrome, ICAN, neurodevelopment | 1 Comment »
