I’m Doing a Seminar on DS

My correspondence and private conversations have convinced me that the whole area of non-conventional intervention in Down Syndrome is a huge confusing mess for many parents.  Even the old-timers tell me they are confused about it.  Because I’ve been riding the crest of this for the last sixteen years, I’ve picked up quite a bit of information which I’d like to share with families in my local area.

So, my daughter and I have scheduled a seminar.  It will cover three major topics:

  1. Nutritional intervention in Down syndrome
  2. The new Changing Minds Protocol as a treatment in Down syndrome.  See www.changingmindsfoundation.org.
  3. Neurodevelopmental programs (ND), how they lay important foundations and move development forward.

Date: August 1, 2009
Time: 10:00 – 3:30 p.m. Central Time
Where: Ohio Township Central Library, 4111 Lakeshore Dr., Newburgh, IN  47630, in the Diamond room.
Cost: $35 at the door.  If you pre-register by July 25, the cost will be reduced to $20.

Guarantee: If you don’t get your money’s worth of useful information, your registration fee will be cheerfully refunded on the spot.

Schedule:

Part 1
10:00 – 11:30  Targeted nutritional intervention, Dietary nutrition, feeding issues, and what can be done about many of the problems associated with DS.

11:30 – 12:15  The Changing Minds Protocol, neurogenesis, and memory.

12:15 – 1:00 Break for Lunch.  There are numerous fast food restaurants within 3-4 minutes of the meeting site.  Or bring a brown bag lunch.

Part 2
1:00 – 3:30  Neurodevelopmental programs, what they are and how they work.  This portion of the seminar will be presented by Grace Kauk.

To pre-register, send a note to DS Seminar, c/o Miriam Kauk, 7622 Nottingham Dr., Newburgh, IN  47630, indicate if you are registering for Part 1, Part 2, or both, and include your check for $20.

A Question About Iron

Iron toxicity in DS has been discussed elsewhere on this site.  Because of this toxicity, iron is not included in Nutrivene-D.  For this reason I also avoid any foods for my daughter that are “fortified” with iron.

Now, today I received private correspondence asking whether children with DS usually are low in iron.  I don’t know what those statistics are, so I’m taking this opportunity to try out the poll feature that WordPress offers.  There are two polls.  The first asks about blood levels.  The second asks whether your child is receiving supplemental iron, either by fortified formula, fortified foods, or MSBPlus, or other vitamin supplement.

If you have other comments about iron, please post those in the comments.

Joie de Vivre

Isaac Scott Watson

Isaac Scott Watson

Eight and a half years ago a woman in Indiana made a choice.  She was pregnant, carrying a baby with Down syndrome.  Should she abort?  Her situation, and all of society argued that she should get an abortion.  But she didn’t.   That woman was honored for her choice yesterday at Isaac Watson’s funeral.  His birth mother gave him the gift of life.

It was only six days from the time Barb and Scott Watson received the call about a baby who needed a home until the time he was adopted as their son.  And just last week, it was only six days from Isaac being sick with a fever until his days on earth were ended.

The Psalmist wrote that in God’s book our days  were all written, the days that were ordained for us, when as yet there was not one of them.  That book had proscribed eight and a half years for Isaac.. so short… but such a life!

Back in April, Barbara wrote about his infectious joie de vivre:

Our son loves to throw open his arms to the man driving the trash truck when we are out walking the dog. The man has stopped, jumped off, and given him a hug several times.  Now he honks, which makes Isaac smile and laugh, when he sees us out.  Isaac also loves to invite people over to our house when he meets them.  Its something we gotta keep working on….

Isaac lived his life fully, often demanding (with overwhelming cuteness) that those around him enter into his games, plans and activities just because he said so.

Here are a couple of the comments that were posted on the ES email list in response to the news of his passing.

From Sherry:

…My heart aches for Barbara and the family. I cannot tell you how close to home this hits for me…

[Barb] was talking about how Isaac would invite everyone he met home with him. And the little sweetheart had already survived leukemia! I found it particularly poignant when I read that he was scheduled for heart surgery in September for the exact same conditions Jamie. was operated on for when she was almost 8.

…My child and many of our children stand on the shoulders of these fragile little heroes who have gone before. I so often think of the book Angel Unaware by Dale Evans published in 1953 when our children were habitually hidden away and the medical expertise to perform the heart surgeries we almost take for granted today had not yet emerged.

I love the opening quotation and think particularly of Isaac’s propensity to invite “strangers” home to visit.  From Hebrews 13:2 “Be not forgetful to entertain strangers; for thereby some have entertained angels unawares.”

Linda shared a poignant moment from her son’s funeral, that all the children released a balloon to send up to Heaven.

This inspired Cass to honor Isaac in a similar way.  She wrote

Though I did not “personally” know Barb…this feels like family.  I feel so incredibly sad for the Watson’s.  And yes, this makes me, too, realize the preciousness of our little Michael- of all our children-all the more deeply.

Cass writes that she shared about Isaac with her kids, and then she got some white balloons to send heavenward in honor of Isaac.  Here’s a pic.
balloon

At the viewing, Barb shared two things.  She said that whenever they went anywhere as a family, Isaac would never wait.  He was always running on ahead.  So full of life and excitement!

She also shared that one of her prayers had been that if Jesus returned in their lifetimes, that the whole family would be caught up to greet Jesus together.

Then she added, “The little stinker.  He did it again!  He ran on ahead!”

house-lineUpdate: Here’s another example of a family who understands about life and blessings.

7. Pursue Speech, not Sign

The teaching of individual signs to replace delayed speech is very popular among therapists and parents of children with Down syndrome.  In fact, this has become the normal therapeutic route in Early Intervention. In my opinion, this focus on sign language is a mistake.

Now, before you berate  me for my misguided view, hear me out.  I’ve been following this sign language question for years, and seen quite a bit of  heated discussion.  The controversy comes because of the phrasing of the question,   “Should parents teach sign language?” A better question is, “Should parents pursue speech or pursue sign?”

The sad fact is that Parent Professors have limited time to pursue therapy options. So, my advice is to put that limited time into the interventions which will give the best result. There are, in fact, a number of interventions toward pursuing speech which give excellent results.

Before we begin, realize that this choice of speech vs. sign is a question of expectations. Do you want normal speech and language? Do you believe it is possible? Are you willing to do the extra work to reach those expectations? This seems so obvious as to be almost insulting, but just having this out on the table is very helpful, in my opinion. Most DS parents are working with speech therapists who have very low expectations, and their treatment recommendations are determined by those expectations.

In this post, I’ll discuss four developmental skills that are necessary for good speech and language.  These are auditory tonal processing, auditory sequential processing, social turn-taking, and oral-motor skill.

Auditory Tonal Processing

For good speech, the child needs to have good auditory tonal processing. The brain needs to learn to process the various frequencies in the sounds that the ears hear. If the brain cannot distinguish those frequencies, then the child will not be able to reproduce them in speech. For this reason keeping the ears free of fluid is critical. But there is more to developing good tonal processing.

651px-Biber_mysterienExposing the child to lots of good classical music and a rich (but not cluttered) auditory environment will help. This means, play lots of Mozart.   Sound therapy programs such as  SAMONAS  address poor tonal processing in a therapeutic program. If the ears aren’t working because of fluid, then the tonal processing will be poor. If the ears have been full of fluid for intermittent periods in the past, then there may be remedial work that needs to be done to correct poor tonal processing.

Few speech therapists will specifically address auditory tonal processing in their clients. Neurodevelopmentalists from ICAN and NACD do this routinely.

Auditory Sequential Processing

Beyond tonal processing, the child needs to have good auditory sequential processing. Auditory sequential processing is a measure of the auditory short term memory. It is sometimes called the auditory digit span.

A ten-year-old child with everything else in place, but with auditory processing of two will still carry on conversations at a two-year-old level. If the auditory processing level is one, then the speech you can get is one word at a time.  The level of language development cannot progress beyond the level of auditory sequential processing.

If the processing level is at one or two, then even with sign language, all you will see are single and paired signs.  You don’t have much “language” and you certainly don’t get the rich syntax of ASL.

Again, speech therapists don’t specifically address auditory sequential processing. For those children who work on this, the results can be profound in the level of language development. The best work here is done at home, during the day, throughout the day. It is accomplished through the normal day-to-day interactions that the parent has with the child. There are several articles on this site which address and explain how to work on processing.

Neurodevelopmentalists include work on auditory sequential processing in their programs routinely.  If you want your child to have abilities of conversational language, then spend plenty of time working on auditory sequential processing.

Social Turn-taking

In addition to auditory processing, good speech and language requires social skills in communication and turn-taking. Our kids spend their lives with others being in control of every interaction. They are almost never an equal partner in a social setting. This one-way direction in interaction leaves our children with incomplete skills in speech and language. It eliminates training in social communication and turn-taking.

tabletennis02 by everything_essentialThe child can only become a social person by communicating with people. He needs to learn to stay in social interactions for several turns.  Think of how you converse with a peer:  you say something… he says something…you say something…he says something.  We call it conversation.  This simple skill of turn-taking has not been learned by most people with DS with whom I’ve tried to have a conversation.  Think of it like a game of table tennis with your child.  In this game, however, you are not playing to win, but to see how long you both can stay in the game.   You both play in such a way that the ball can be easily returned.

Both a game of ping-pong and a conversation are frustrating if one side always drops the ball. This is where the techniques developed by James D. MacDonald, affectionately called Jimplay by parents, are so helpful. His methods are second nature to mothers–usually– if we just give in to our intuitive leanings. I’ve written in greater detail about MacDonald’s methods in How Not to Be a Therapy Mom.

Unfortunately, what happens with special kids is that we spend our time trying to teach our child or do therapy on them and we neglect the simple fun of playing with and relating to them as a person. It is in the playing that social turn-taking and two-way communication is learned. Dr. McDonald does us a favor. He says that simple interaction and relationship is actually important therapy and thus gives us permission to get down on the floor and play.

Speech therapists do not routinely include Jimplay in their programs. But you can easily learn these techniques and incorporate them into daily life.

Oral Motor Skill

The final developmental skill necessary for good speech and language is oral-motor. For proper speech, the child needs to have the skill and strength to move those mouth muscles with precision and without tiring.

Sara Rosenfeld-Johnson (SRJ) has demonstrated that a big piece of the problem of speech in DS is poor muscle strength and control in the tongue, lips, jaw and breathing apparatus. Obvious, right?

Rather than teaching sign as a way to compensate, SRJ decided that the solution to weak muscles was to isolate them and exercise them. She developed a set of easy-to-use tools and protocols to move these individual muscles from weakness and poor motor control to strength and precisely graded use, plus she has made her techniques and tools entirely available to parents.  These techniques and tools are changing speech profoundly for the kids whose parents know about this.

But, once again, the oral-motor techniques and tools are not even taught in the training programs for speech therapists. It is highly unlikely that your son’s speech therapist through Early Intervention will be trained to assess and address oral-motor issues.

But What about Sign?

Auditory tonal and sequential processing, social communication and turn-taking, and oral-motor skill are the pieces necessary for development of good speech and language. Can sign language help here? Yes, if it is used to enhance one of these pieces. Signed gestures can be used to encourage social communication, for example. Or they can be used so the child can play sequential processing games. Can sign language hurt here? Yes, if it interferes with or replaces the time spent teaching and developing the necessary pieces for spoken language. Yes, if it allows the parent to settle for low expectations. Yes, if it removes a child’s need to speak.

My recommendation would be to focus the limited time you have on these four pieces necessary for speech and language. If sign helps you accomplish these, then great. If sign distracts from these, then put your time in on oral-motor, good tonal processing, auditory sequencing, and Jimplay.

Vine-heart-line

Top Fifteen Things New Parents Should Know

This post is #7 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.

Teresa Cody is blogging

Teresa CodyTeresa Cody, one of my heroes, has an intriguing post about neurogenesis.  She makes a tentative connection to why teens with DS so often decline after puberty.  Interesting stuff.

Teresa is the founder of the Changing Minds Foundation and one of the thinkers behind the innovative use of Ginkgo Biloba and Prozac in Down syndrome.

I’m glad to see Teresa blogging.  The rest of us get to benefit from her understanding of the hard topics and easy explanations.

8. Don’t Wait for “Their Own Time.”

I read this one often, especially on the blogs of the new mothers, “Children with Down syndrome learn everything any other child learns, just in their own time!” There is a reason that this hope-filled statement is not made by parents of teens and adults with DS. We know it isn’t true.

Now, I’m all in favor of high expectations. But those high expectations need to come with a healthy dose of reality. Early intervention, as it is currently practiced, doesn’t cut it. The reality is that a child with Down syndrome will not learn everything that any other child will learn, not unless there is specific, targeted neurodevelopmental input, and specific targeted metabolic input. Even then it is an uphill battle.

Think about it this way.  The Runner by Hamed SaberI have a son with the potential to become an Olympic quality runner. He is good, and fast. But just waiting for “his own time” will not be enough for him to reach that level. Instead, he will need years of practice and targeted coaching. Since he has never pursued this training, he cannot expect Olympic quality.

In your son with Down syndrome, normal function would be an Olympic achievement. It will not happen “in his own time.” But normal function is possible in many areas with the right input and coaching.

Use these early years in your child’s life to lay the groundwork for the later accomplishments. In what follows, I’ll tell you what I consider to be the most Read more »

9. Learn to Build and Support the Immune System

If you have a child with Down syndrome, you probably have a child with a poorly functioning immune system. Frequent sickness is an expected part of the “syndrome.” Yet it doesn’t have to be. Once you understand the “very good” design of the human immune system, then you can begin using tools to  support that design rather than taking actions which undermine it.  Your goal should be to build the immune system, not just to achieve a quick reduction in symptoms.

In this post we will look at antioxidants, essential fatty acids, herbs, the gut and sinus protective barriers, and fever as they relate to the immune system.  Entire books are written about these topics, so this will be a quick overview.  As the Professor Parent you’ll have to do the deep study yourself.  The goal of this post is to list some tools that you can use to build the immune system in your child. Read more »

10. Focus on Gut Health

This post is part of a continuing series, The Top Fifteen Things a New Parent Should Know which was written to the parents of a particular baby boy who has Down syndrome.  These are the things I wish I had known from the beginning when my own daughter was born.

Parents of a baby with Down syndrome must become Professor Parent PhD

Constipation is a gut wrenching problem in our kids.  Literally.  If you spend any time at all on Down syndrome related forums and email lists, you will see this problem discussed.  Yes, we moms actually get on the Internet and talk about poop.

There is a comprehensive collection of parent solutions to constipation elsewhere on this site, so I won’t list them here.  Instead, I’ll look at three areas to focus on preventively to keep the gut healthy.gut

First, a healthy gut  is lined with a carpet of microvilli on the ends of the absorptive cells.  These tiny tendrils produce enzymes for digestion.  A healthy gut hosts billions of friendly bacteria which also digest food, and which form a protective wall against unfriendly bacteria and parasites which attempt to set up residence.  These friendly bacteria form an important part of the immune system.   Finally, a healthy gut has regular, strong peristalsis, the rhythmic squeezing that moves food through the gut.

Problems in any of these areas are interconnected.  Read more »

11. Become Professor Parent, Ph.D

This post is part of a continuing series, The Top Fifteen Things a New Parent Should Know which was written to the parents of a particular baby boy who has Down syndrome.  These are the things I wish I had known from the beginning when my own daughter was born.

Parents of a baby with Down syndrome must become Professor Parent PhDProfessor Parent PhDThere was a time when parents were parents and professionals were professionals, and the two didn’t mix.  We could confidently go to the family doctor for answers to our questions. We could go to the therapists and they implemented a plan that we simply accepted.  However, if you want to change your son’s future, you must become the expert on everything related to Down syndrome.

Welcome to the New World

Most new parents of a child with Down syndrome are sent the warm, engaging article by Emily Pearl Kingsley, “Welcome to Holland.”  I like this article because of the comfort, and order and peace that it communicates from an experienced mother.  However, I’ve come to realize that my own experience with Down syndrome is not described by Kingsley’s article.

The world of Down syndrome has been thrown wide open.  Sixteen years ago, when my daughter was born, it was an ordered, comfortable world of expert professionals and compliant parents.  That world is gone forever.  Three things have happened.  First, the Internet.  Parents now have the ability to do research for themselves, and more importantly, to network with one another.  Second, the Human Genome Project.  In 2000, the complete mapping of the 21st chromosome was published.  For the first time ever, we actually know what genes are triplicated in Trisomy 21.  We can then postulate specifically what that triplication is doing in the boDown syndrome mousedy.  The next obvious step is to do something about it.  The third thing that changed the old world was the development of a genetically modified Down syndrome mouse.  This allows researchers to actually try stuff, and then crack open the skull of the mouse and see what happened to the brain.  Our world is now uncharted territory.

It is like we have arrived in a previously unknown continent.  Some came because of the love of challenge, and some were forced to come against their will.  Nevertheless, we are here, facing a world of bounty, but also of extreme danger.

Some of us are explorers, and like the explorers of old, are looking for things Read more »

Thigh High Leather Boots

Years ago there was a mom who became legendary on the Down syndrome parent email lists. Her response to the intimidation at the IEP meetings was to engage some power dressing of her own. She arrived at meetings wearing a leather jacket, a T-shirt with a sarcastic slogan,  skin-tight jeans, and thigh high leather boots.

The website is sadly now gone from the Internet. But thanks to the Way Back Machine, the page is saved for posterity.  Here is her photo:

thigh high leather boots

For years, those boots have been a metaphor for the attitude that we mothers have had to adopt. The attitude is no more natural to us than the biker-chick get-up with the boots. But to fight for our kids, we need the power attitude.

The lab technician is sticking your son once, twice, and again, looking for a vein? Put your boots on.

The doctor is patting you on the head and telling you to trust him? Go get your boots.

The school won’t even try to teach your child what you know he can learn? Time for the boots.

You are parenting in a world which has already decided that children with DS are disposable. You are your child’s case manager. If you don’t fight for your child, no one else will. That fight usually means that we need those metaphorical boots.