To be proactive is to anticipate, prepare, and intervene based on a long-term vision and perspective. When anticipating the future, you react accordingly before it actually happens.

To be reactive is to respond to a situation, rather than creating or controlling it.

How does this relate to what we do with our children? What we do in the short term affects the long term; and that myopic/short-sighted intervention can have a negative impact on outcomes.

One contributing cause is lack of a vision, lack of hope, and a willingness to accept a short-term possible solution. Another underlying issue is that most teachers and therapists are not involved for the long term and are not aware of the long-term results or consequences of their interventions. The third contributing factor is a lack of awareness and knowledge of the whole child. When looking only at pieces, one cannot perceive, acknowledge, utilize, or evaluate the impact on the gestalt of the individual.

Armed with decades of experience working with tens of thousands of “Whole Children”, it is relatively easy for us at NACD to look at your children and to be proactive. Being proactive requires looking at a child’s strengths and talents. In addition we must look at weaknesses and issues, determine what pieces we need to put together or issues we need to resolve, in what order, and in what priority to produce a good ultimate outcome. One of the benefits of working with “Whole Children,” working with the full spectrum of children, and working with individuals (often for decades) is that we have the benefit of experience and perspective.

Working with “Whole Children”

I have spoken at length about the importance of working with “Whole Children.” Working with “Whole Children” simply means we are working with all aspects of the child from their health, sleep, sensory function, social function, behavior, speech, language, fine and gross motor function, cognition, and academic development to their attitude, self image, etc. I don’t know if it is possible to be truly proactive without working with the whole child. Most children have disconnected individuals addressing various aspects of their lives, coming and going; and the more issues a child has, generally the more people there are working reactively, not proactively, with them. Working “reactively” means they are reacting to what is perceived as an immediate issue or need, without an historic or long range, long-term vision.

In discussing all of the people who can be involved with your child, you are tempted to associate them all somehow, to call them a team or an army, suggesting that they are somehow a cohesive unit working together. The reality is that they are individuals working with pieces, more often than not in virtual isolation. Such individuals are often working reactively, not proactively. They are working with their one piece generally in virtual isolation and establishing their piece as their priority and generally from a perspective that they are only going to be involved for a relatively short period of time. Working with children for only a few months, or even years, does not permit one to gain a long-term perspective and to understand the implications of what is in reality short-term, reactive intervention.

Proactive Intervention

To help clarify what it means to be proactive, it is best to look at the antonyms or words that are essentially the opposite of proactive. Those words include such things as myopic or short-sighted or improvident. Another way to look at this is to say we are being reactive as opposed to proactive.

Reactive Intervention

If we are being reactive, we are reacting to problems; if we are being proactive we are looking forward, into the future, so as to prepare for the future. As parents with limited experience, it’s often difficult to be proactive. It’s difficult to be proactive if you have not had the experience and knowledge to know the degree to which what is happening today, or not happening today, is going to influence tomorrow, next week, next year, and the future. Sadly, many therapists and educators do not work with individuals over long periods, as in decades, to understand what issues can be created by working perhaps hard, but not working from a long-term, proactive perspective.

Some common examples of being reactive rather than proactive would include things like teaching young children with Down syndrome to sign. (link to Signing contra-indicated for DS) The perception is that Johnny isn’t talking and is frustrated, so let’s give him a means of communication that he can use soon–signing. Looking at the short-term results, which may be the child being able to communicate a few basic needs and being perhaps less frustrated, reinforces the use of signing. But if looked at long-term and proactively, we discover that we have had a negative impact on the child’s ultimate ability to communicate verbally, and even more significantly, have had a negative impact on the development of the child’s auditory processing, with resulting adverse affects on the child’s cognition and global maturity. Reactive intervention is not the best intervention.

One of the more glaring areas where we often see disastrous effects of reactive intervention is in the area of mobility and walking. We sometimes have children come to us who never developed the neurodevelopmental or the structural foundation that can ultimately produce a child who is a functional walker. Being proactive, we know that we have to follow a typical sequence of development, which among other things, requires the neurological, tactile, proprioceptive, and structure pieces of the child going through the necessary developmental stages before working on standing and walking. Children in walkers who had been “helped” to stand before they had the strength and structure to do it themselves, or do it properly, and then “assisted” to walk using various apparatuses to hold them up so they could move their legs, usually end up not being able to walk independently. Often they have created structural issues that even numerous surgical interventions cannot properly address. Children you see walking with walkers or braces and crutches almost always end up in wheelchairs. Yes, the goal is walking; but can we achieve it by circumventing the foundational pieces?

An example of a reactive approach in education is encouraging children to write before they neuro-developmentally are ready. Sixty or seventy years ago, it was not uncommon to make left-handed children in kindergarten and first grade, at five or six years of age, write with their right hands. This practice was stopped because interfering with the natural development of handedness resulted in a plethora of neurological and even emotional problems. Today this isn’t happening; but today we have preschool education, which is even creating more problems by making children write before they developmentally have even firmly established a dominant hand. A child may be leaning toward the right hand, for example, at three or four, and if encouraged to write with the right hand, establish a skill set for writing with the right hand. Ultimately such a child may turn out to be left-handed. Because the skill set for this specific function was established, the child will tend to continue to write with the right hand and is generally encouraged to continue to write with the right hand, resulting in all of the issues that were created 60 years ago, including poor handwriting.

The Reality of Education

The reality of education in general is that the very structure and organization of school as we generally know it almost defines reactive intervention. Education is generally perceived from the short-term perspective of needing to get specific curriculum material into a child’s brain, whether or not the material is targeted to the specific child’s present knowledge base, to their level of processing and understanding, let alone their interests. The net result of reactive education is very often poor outcomes, children often learning to dislike or “hate” school, which becomes synonymous with hating learning; and often because of the abnormal environment of narrow competition, leaving the system with a damaged self-image and lacking a perspective of who they are and what they can be. Proactively it’s not difficult to understand that at the foundation of education we should have the goal of teaching the child to love learning and to make them feel that they are smart and can learn. Is anyone shocked to hear that children do well learning things they love and struggle with what they hate? If the goal of education is to produce adults who are actually educated, who become not just lifelong readers, but life long learners with the confidence to pursue their hopes and dreams, then the system needs to be re-evaluated and made proactive not reactive.

Educational & Therapeutic Perceptions

There are numerous examples in educational and therapeutic intervention that demonstrate the negative aspects of reactive intervention. The problem is ubiquitous, and it doesn’t seem to be changing anytime soon. Proactive intervention implores us to look at the child from a long-term perspective and with a vision and a plan to produce better outcomes. If existing outcomes are perceived as actual reflections of an individual’s potential, there is no motivation for change.

Perception of potential is a reflection of one’s experience. I recall a colleague correcting me many decades ago when I referred to someone as having twenty years of experience. He told me that the reality was that they had a year of experience twenty times, not twenty years of experience. I have been extremely disappointed to see how incredibly slow change in traditional education and therapeutic intervention has been. But doing the same reactive things year after year and producing the same limited results has not stoked change, but has reinforced the perspective of limited potential, and has encouraged many educators and therapists to keep doing the same things, producing the same inevitable outcomes.

Proactive intervention is stimulated by a need to do things better and to improve outcomes, all of which is perpetuated by a vision of what can be and what should be.

Reprinted by permission of The NACD Foundation, Volume 32 No. 5, 2019 ©NACD

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In an effort to help our NACD families and others maximize their efforts and make the most out of the time they have to work with their children, it is incredibly important to keep reminding everyone about the significance of intensity.

The foundation of what we do at NACD is designing very targeted individualized programs that are created to help provide the maximum results, relative to the time invested. The significance of being targeted is that we stimulate and change the brain when we apply specific, organized, targeted input with the necessary frequency, intensity, and duration. Random input is just noise to the brain; disorganized input is irrelevant to the brain; and any input that is not received by the brain with intensity never happened.

We understand that intensity, the most important of the Super 3 (frequency, intensity, and duration), is not entirely a reflection of how loud or strong or exciting we are when working with our kids. The big factor is what the intensity is with which they are processing the input. Have you ever seen someone fall asleep at a party or in a movie theater or sporting event? These are all intense environments; but if that person is asleep, it has zero intensity for their brains—it didn’t happen. I recall the question I heard way back when in school—“if a tree falls in the forest and there is no one there to hear it, did it make a sound?” It’s not about you, it’s about them. Back to the folks at the party-how about if they are not asleep, but just dozing? Or, they just had a fight with their significant other and are running through the last argument in their mind one more time, or have a song stuck in their head that keeps going around and around. How much did all that “intensity” that is going on impact them? Probably not much. Ultimately intensity is based on how the individual is receiving/processing the input.

I have always related intensity and impact on a scale of 1-10. If something goes into a brain with the intensity of 9 or 10, learning is virtually instantaneous. Drop it down to 7-8 and we need a fair amount of frequency and duration to change the brain. If the intensity is only a 6, we need a lot of frequency and duration—many times per day and lots of days, weeks, or months. At a 5 we are in for a very long haul. And below a 5, we are better off taking a nap.

Let’s look at some of the things that affect intensity, starting with physiological issues. Diet is one of the things we talk about with all parents. I won’t get into the specifics of diet in this article but suffice it to say that if you feed your kids pancakes with syrup for breakfast, just send them back to bed and forget about school. Sleep is another foundational issue, and doing what is needed for both you and your child to get enough sleep is very important. So before we go any further, let’s see where we are. If what you are trying to put into your child’s brain is super exciting to them and they love it, they ate some good protein, had a great night’s sleep, and feel wonderful, you might get them to an 8. Trying to input something they might like but don’t love, drop to a 7; not a wonderful breakfast, drop to a 6; and then you were up with them for half of the night, we just dropped to a 5, and perhaps you are both getting ready for a nap.

Just yesterday I had a talk with a very nice family, great, concerned parents who have a teenage son on the autism spectrum. He has had a few small seizures that did not appear to have any residual effect and is on two different anti-convulsive medications. His doctors have also put him on two additional drugs that are used for schizophrenia and irritability. When I look at this boy, he looks like he is about to fall over with his eyes open. He’s at a 2-3 for intensity, and if you work hard, you can push him briefly to a 4, and on rare occasion to a 5. Under the circumstances we hope to maintain what function he has until these medications that all slow his brain down can be altered or eliminated.

Drugs that are used for seizure control and behavior and attention control are slowing down the brain. As a side note, the neurologists and neurosurgeons that I worked with almost 50 years ago were aware that the vast majority of seizures actually caused no harm, and my clinical observations over all of these years verify it; but we still have neurologists who see their mission as stopping all seizures, regardless of the fact that they are medicating the child to the point where there can be virtually no development. I’ve been happy to hear that after 50 years, there are a few neurologists acknowledging that not all seizures spell the end of the world and are being much more conservative with the medications. And fortunately there are new very promising alternatives to the drugs.

Diet, sleep, health, exercise, or the lack of, and medications all have an effect on the brain, your child’s ability to process information, and thus to be stimulated and develop.

I have a confession to make. I do not get regular organized exercise. I played sports, and I played them hard. I have almost always lived where I had a good size piece of land and always loved working outside and work hard. I enjoy walks and hikes, but a daily exercise routine—never. It’s a good thing your child has parents and helpers to help structure their days, establish priorities for them, and to motivate them and make things fun. Perhaps if I had some great fun personal trainer who came and got me at a specific time each day and praised my success, I might exercise. I probably would also need to add a 25^th hour to every day. As adults we are responsible for ourselves. We can choose to eat well, exercise, whatever; however we are also responsible for our children, and it is our responsibility to see that our children eat well, get their sleep, and do all the other things needed to help them develop well. Even the smartest child isn’t wise. We need to make the choices for them and keep them heading in the right direction. Side note: How many of you give your pets more nutritious diets than your kids?

The younger the children, the easier it is to make things fun and increase the intensity. I constantly hear that little Johnny is bored with this or that or he doesn’t like it. The reality is that it’s not about the activity, it’s about the environment of the activity and how it is presented. Remember Tom Sawyer and how he got the kids to paint the fence for him? Create the right atmosphere, and you can get your kids to have a ball cleaning toilets. If something doesn’t hurt, you can create an atmosphere that makes whatever you are doing fun, and if something hurts, stop doing it because something is wrong. If you can’t get your intensity or their intensity above a 5, what should you do? You should go take a nap and come back to it later with good intensity.

One of the most common issues I see when watching program implementation is a lack of intensity when a child gets something right or does something well. I can observe someone working on processing, and the difference in the response when the child gets something right or wrong is almost indistinguishable. Often when reviewing program implementation videos, we have to pay close attention to see if a child got something correct or not because we can’t tell the difference from watching the reaction of the parent or caregiver.

Children of most any age will respond to your positive attitude and words of praise. If older children need something more to get their intensity up to adequate numbers, then explore some form of a positive token economy, where achievement as a reflection of their trying and doing something with sufficient intensity to impact their brains can purchase special privileges and such. But always let your child know that you are proud of them for their efforts and achievements. Don’t reward compliance that does not equate with intensity. Reward achievement even if you have to initially make it a bit easier for them so that they can experience success.

One of the most common killers of intensity is duration. Many of the activities we give children have a duration of only a minute or two, and the duration we give is a maximum. Maximum, not minimum. More often than not, more turns a positive into a negative. We encourage parents to, if at all possible, end an activity on a high note. Parents tend to continue an activity until the child has had it, and it turns negative. The result of that is the next time you go to do that activity the child recalls it as a negative, not a positive. Imagine giving your child the forbidden fruit—ice cream. You give them just a spoon or two and they love it and you stop. They want more. Now imagine that you gave your child a couple more of spoons of ice cream—still loving it—and then you gave them a small bowl. They’re still loving it, but not quite so much. Then make them eat a large bowl, having to force them to eat it over the course of an hour; and to really make it fun, make them eat more and more until they throw up. That would sure teach them to love ice cream. When should you have stopped? We have the ability to turn most anything that can be positive and fun into a negative. Remember: it’s all about intensity.

The big secret to success is intensity—the intensity with which your child takes in the input you are providing.

Intensity is not only foundational, it is mandatory: Get it?

 

Anything that adversely affects your child physiologically has a negative impact on intensity: Get it?

 

Any mediation that affects your child’s brain is likely to have a negative impact on their intensity: Get it?

 

What you do can affect your child’s intensity, but ultimately, it’s a matter of doing what works to create intensity in them: Get it?

 

Too much of a good thing is a bad thing; stop while you are ahead: Get it?

 

If your intensity or your child’s falls below a 5 and you can’t raise it, take a nap: Get it?

 

To be successful we need to provide your child with specific targeted input with sufficient frequency, intensity, and duration: Got it?

 

Good!

Reprinted by permission of The NACD Foundation, Volume 31 No. 8, 2018 ©NACD

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Jake is the youngest of three children. He was first flagged as struggling academically in kindergarten and then again in grade one. Jake struggled with saying the alphabet, sounding out the alphabet, math, staying focused, sitting still and making/keeping friends. At home, he was busy physically with sports, but could not get along with siblings, couldn’t take a joke, had multiple meltdowns over silly things and spent a large part of everyday upset and crying. Our family spent the majority of our days walking on egg shells in hopes of not triggering Jake.

Jake’s grade one teacher convinced me to have a psychologist evaluation done in order to help get the support Jake needed in school. I ended up paying $1300 for a 3-hour evaluation where I was not allowed to be present. The psychologist diagnosed him with ADHD and said he was the most severe she had ever seen and that he would never be able to function without medication.

In the fall of grade two, I started Jake on the recommended stimulant drug and within a short amount of time he was a walking zombie, no spunk, no personality glossy eyed, no appetite but he was able to focus. At the 7-month mark, our family physician discontinued his medication due to a 10 lbs weight loss. Jake’s personality returned and so did his appetite and we were thrilled. We vowed never to medicate again.

In the fall of grade three, I was still very concerned with Jake’s academics. I expressed my concerns and our history to a doctor at work whom I had never met before. To me, this encounter was like divine intervention. He recommended a program called NACD. The doctor encouraged me not to wait but to act as he handed me a USB stick with an audio recording of child development. When I left work that day, I had a plan and I had hope for the first time.

We had our evaluation in December of grade three, near the end of 2014. I liked how Sara conducted Jake’s evaluation. I was allowed to be present for the whole evaluation which took maybe a total of 2 hours. Prior to the evaluation, I had filled out paper work on things, like what did Jake eat, how much screen time did he get, physical activity, team sports and how many hrs of sleep he was getting a night, were just a few of the questions. In my opinion, this was actually a head to toe assessment of what was going on in this child’s world. I was sold on NACD from just the evaluation alone.

Within a few days, Sara Erling our Developmentalist, emailed us a program that she’d developed specifically for Jake based on his needs. We started immediately. Within weeks, we started to see changes, but the greatest change happened at approximately the three-month mark. Jake, in a short amount of time, was no longer wiggling all over the place and was able to sit and focus for extended periods of time in class. I was now more determined than ever to continue this program. With the help of NACD and our Developmentalist, Sara, our goal was to get Jake to grade level and able to function without supports.

With our Developmentalist, Sara Erling, we have worked with Jake to meet his specific needs. Sara has done an amazing job supporting both Jake and the family. She has helped instill positive behaviours as well as delivering quarterly evaluations. She continues to set the bar higher and higher to ensure we continue to see the changes necessary to move Jake forward.

NACD isn’t about a band aid solution like stimulant drugs. They are helping parents help their children to get lasting results through brain development aka neuroplasticity. In a short 3.5 yrs, NACD has helped us develop Jake to the point where he can thrive on his own without supports or medication! Not bad for a child who according to one, would never function without medication (heavy sarcasm). We have a confident, happy, thriving child who knows that he can be successful in life with whatever he chooses.

Thank you, Sara Erling, for never using labels and always knowing that we would get Jake to the finish line. You have changed our lives for the better and we are so grateful for all you do!!

—Rachel Schappy (Mother)

NACD Newsletter, June 2018 ©NACD

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There has been a lot of interest lately in many nutritional therapies reportedly of benefit to people with Down syndrome. Some of these therapies are relatively new and others have been around for awhile. Some of the more widely talked about supplements are Nutrivene D, MSB, and HAP Caps. Some of these therapies have been combined with Piracetam or thyroid medications. Historically, the interest in nutritional supplementation has come and gone and now come again.

The proponents claim the supplements will improve behavior, learning and even appearance. They claim there are known deficiencies in people with Down syndrome and these deficiencies can be demonstrated by laboratory tests. There is no evidence to show these therapies are beneficial. There are some studies, for example, that show zinc levels are low and that replacing the zinc has a beneficial effect. The studies are in Italian, however, and so I cannot comment on their quality. So far, I have not found any zinc deficiencies in patients I have tested. On the other hand, there is a recent study that shows that the amino acid levels in the blood of people with Down syndrome are not deficient. There was also a study supported by NADS, a parent organization of the Chicago area, that showed no benefit of supplementation with a special vitamin formula that is similar to the present-day HAP caps of Dr. Warner. What the study did show is there does seem to be improvement both with the vitamin formula as well as with the placebo. This suggests that our expectations of the outcome of therapy affects the results. Furthermore, learning and developmental progress are stepwise processes and don’t always follow a smooth curve.

Although generally the therapies are felt to be safe, there are potential side effects if very large doses are used, particularly of the fat soluble vitamins (Vitamins A, D, E, and K) as well as some minerals. For example, zinc at 20 times the typical dose has been shown to decrease the infection-fighting cells of the blood and also decreases copper levels in the blood. Chromium in large doses is linked to cancer. Beta-carotenes and anti-oxidants in improper amounts and proportions may increase cancer and heart disease.

There are many issues involved. What is true deficiency and how reliable is the testing? In some cases, the laboratories not only do the testing, but they also sell the supplements. Does a “low” level necessarily mean that the function is abnormal? What does a “high” level mean? Does supplementation correct a deficiency? Sometimes giving a substance by mouth does not always lead to a change in the blood level or the cellular level of that substance. And if you do correct the deficiency, does that have an effect upon the function of the person? The real issue is just that, does putting a supplement into the mouth cause a beneficial effect for the person? The human body is a complex organism that does not simply respond to simple biochemical measures. What happens to cells in a test tube does not always translate into what happens to the person.

My personal observations are that individuals who use supplements are not significantly different than those without supplementation. Some people have stopped the therapies because of side effects or because they noticed no difference. They can also be quite expensive for those with limited income.

This doesn’t mean that these therapies should be ignored. I think that any promising therapies should be studied. However, they should be studied in an unbiased manner and with well-designed, controlled studies that directly compare treatment with no treatment.

As a parent, a response to waiting for these studies is? “My child is here now. By the time these studies are done, it may be too late.” This is true. There is, however, no reasonably good evidence to show they are effective compared to those things that we know are available. My recommendation is to take full advantage of the things we know are effective. Love and support and raising children with Down syndrome in an environment in which they are included in family and community activities. Take advantage of good educational practices and stay involved with their schooling. Speech and language therapy, in particular, is important, since communication is a valuable tool that will allow them to learn, work and be independent. Lastly, good health care as outlined by the Guidelines for Health Care for Individuals with Down syndrome. Ensure that your child has every opportunity to learn and to be involved. If there are concerns about the adequacies of diet, a multiple vitamin is an option. If there are other concerns, dietary counseling may be useful as well.

There are a lot of claims and misinformation out there. Particularly, in an age where communication is so rapid, information spreads quickly. If it sounds too good to be true, it probably is. Professionals, such as myself, who are members of the Down Syndrome Medical Interest Group and Directors of clinics for people with Down syndrome are here to help you and your child.

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