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The commencement speech by Admiral William H. McRaven is outstanding, and I believe it has very special significant for parents who are really trying to take charge of their own lives and assume the responsibility for their children’s lives and futures as well.

For all of our NACD families, I would request that you watch this video every month and get a new dose of the vision.

I would hope that for our NACD families the message, “If you want to change the world, start each day with a task completed and find someone to help you through life,” has some special meaning. As all of our families know, there are many specific tasks to be completed each day, and establishing the habit of starting your day with simply making your bed starts a pattern that you will hopefully then continue throughout your day. We call this a habit, a good habit of accomplishment, as opposed to the habit of ignoring things that you really know you should do. This really can establish a pattern for our days and our lives. But Admiral McRaven’s message is more than what you can do for you or even your children; it’s about changing the world.

If anyone had asked me what my goal was over the past 50 years, it was to change the world. The Admiral commented that the average person meets 10,000 people in their lives. Well, I’ve worked with way more than 30,000 families and helped them to various degrees help their children. My hope has been that every family who succeeds with their child is going to influence many other families through their example. We can’t change lives without changing the perspective of what can be. You have to start with the vision. I have hope that our families see NACD as the entity to help them with their children’s lives, helping to build the foundation that will change and improve their lives. My faith in changing the world lies in the lives of the children who we have helped, who in turn have helped open the eyes of other parents as to what can be. The vision of what can be is the power of hope.

Families assuming the responsibility for their children’s futures are fighting the tide of traditional perceptions, expectations, and procedures. It’s not easy maintaining the focus, bucking the system, and doing the day-to-day work to achieve the outcomes that we want. But each family assuming this responsibility and changing their child and helping them realize a better outcome and life is causing a little tremor. If we produce enough tremors, we can produce an earthquake of optimism, create a tsunami, and turn the tide. We can change the world. I have seen it; bit-by-bit we are changing perceptions of what can be and are seeing expectations rise and parents assuming more control, and even professionals changing their perceptions of what can be.

As you parents dedicate yourselves to helping your children, understand that you are not just doing what you can to help your child, you are producing tremors that are ultimately going to change many lives.

I would encourage you to listen to the Admiral’s ten lessons and change your lives, your children’s lives and help change the world.

“If you want to change the world, start off by making your bed.”

Reprinted by permission of The NACD Foundation, Volume 31 No. 6, 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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