Just a quick note

I have been off the blog for a while, a ton of new info with Lucas that I need to disseminate, however one huge thing I want to inform you about is iron levels. Lucas's iron level is very high, come to find out many children with T21 have high iron levels. (My brain starts thinking of all the things we are trying to avoid like viruses - use iron for energy, leukemias - ditto, also high level of unbound iron can damage mitochondria via oxidative stress - we know this tends to be high in children with T21 and older adults with Alzheimer's). It seems there are answers to commonly seen features of "the syndrome."

There is a condition known as hemochromadosis, it is a genetic disorder which results in faulty iron metabolism and can be seen in children with T21 because the gene is carried on the 21st level. Lucas is having a simple blood test to see if he has the gene. If he does there are methods of correction, if he does not, we need to take another look at his supplements to make sure we are protecting his mitochondria.

Regardless of how old your child is, ask your pediatrician the last time an iron level was taken. There is total iron which is high, but then there is the saturation level. (In Lucas the saturation level was well within range. This means that although there is excess iron in his system it is bound up at this point and is not roaming free to damage his cells' mitochondria. Good time to find the problem!) Ask your child's doctor to check both. I have so much to tell, but this is critically important to health.

As long as you have your little one at the lab for a jab ask your doctor to get a gluten sensitivity test done. We know celiac problems are common to children with T21 and therefore celiac disease is checked for routinely, but Gluten sensitivity is not. Lucas tests for sensitivity came back very high, clearing the gluten out of his diet was a good move.
Talk soon!

A Free e-book From Diagnosis to Delivery

This is a great resource for expectant mothers and fathers who have learned they are expecting a baby with T-21. Long overdue, and much more to be done, but please feel free to share.

http://downsyndromepregnancy.org/

"Down Syndrome Awareness Month"

Lucas and I were just thinking about trisomy 21 and the idea of raising awareness. Many local and national activities planned include an element of societal education, whether it be a "walk" or a group activity such as a dance or a swim. Last year we attended one such event, and I must say it was a wonderful day, there were hundreds of people in attendance - all there to show love and support for a family member with trisomy 21. Despite the celebratory atmosphere, I left the event feeling a touch empty - who were we supposed to be bringing awareness to? Outside of other families who gathered together to celebrate, there were no other groups in attendance. I wasn't sure of the action plan - or the message.

My idea of awareness is enlightening those who do not know - and may not have ever had the opportunity to know - what it means and does not mean to have trisomy 21. Educating new parents about hard earned knowledge to make their journey a bit smoother and describing a true reality that they can not find in books. Telling new parents that the devastation is real but not lasting, their days will be long but their years short, preparing them for the overwhelming instinct to find answers to questions that will help their child achieve and be well, and the absolute disdain for any opinion that seeks to limit their child.

I knew what it meant to be a mother and I wondered in the earliest of moments after Lucas was born how things would change - how I would have to change. Three years later I want to let new parents know that nothing changed. I still lay my head down at night and systematically check off every concern, achievement and "to do" for all of my boys. I create schedules and lists to accommodate everything that needs to be done. I cry when I see one of my boys hurting and I discipline to make sure they grow up to be good men. I refuse to let any of them back out on a commitment, break a promise or sell themselves short. I provide opportunity for them to learn things they wont need to know for some time and love to watch them succeed. There is no difference between Noah and Ryan and Lucas. They all get all that I have to give.

I know the prospect of raising a child with "special needs" is frightening, but truthfully, we can not know the future for any of our children. We will be faced with challenges and difficulties, successes and failures. I find that at the times I am needed most, I have the most to give.

Instead of attending a walk or a party, our family will be raising awareness by example...on the playground, at preschool, at church, in grocery stores, with friends and family. I will speak and write. Most importantly, I will continue looking and searching for ways to help my son be well and achieve and share that knowledge with anyone who will listen.

Regarding Treadmill Article

I just wanted to comment on something that was discussed in the article. The author points out that walking is imperative to environmental exploration and the subsequent perceptual / cognitive development and although I agree walking provides a new level of independence, I disagree that our babies perceptual, cognitive, and self direction skills should be made to wait for their legs to get with the program! If we wait to provide environmental exploration opportunities until baby is even 12 months old, it will be too late to ensure this desire is part of baby's nature. (What if you were allowed to hang out in a swing, or carrier and everything was brought to you? Would you then appreciate being told to get up and go take care of things for yourself?)

Hopefully my book will be available soon, I go in depth of how to set up environments that allow independent exploration regardless of physical skill level. Here is a brief list of ideas...
1. get rid of a play pen / pack and play - get baby on floor during awake time. Find a room or area that is just his - get rid of furniture and obstacles and place all the things baby loves most around the perimeter. Whether he rolls, creeps or crawls, the message is clear - you want it? go get it! Plus, once baby has some mobility and self direction to explore, placing him in a confined space like a playpen or crib undermines it.
2. Do not use swings, carriers, etc to keep baby occupied - it reinforces the idea that they are to sit and wait for things to happen
3. TURN OFF THE TV - a baby can remain stationary in one place for hours and the TV continues working (among other negative effects.) Turn it off.
4. Family game night? get everyone on the floor - reading time for older children? Build "forts" with blankets and get on the floor- older kids will LOVE reading time - the forts will become a "hang out" and baby is included on many levels - obvious benefits of being read to, self direction to see what's going on, familial inclusion, fun, gross motor and fine motor, perceptual, cognitive, etc., etc. Use babies innate desire to be part of the action to your benefit. If everyone is in the fort reading out loud, baby will be wriggling like crazy to get in there!

These are just the tip of the iceberg. You can think of hundreds of ways to allow (not provide) baby to explore. By the time baby starts walking, he will just use that skill to take his explorations to a new level...and then Good Luck with that!

Treadmill Training

This is probably the only intervention I had learned about that I did not use with Lucas. I desperately wanted to, but finding a treadmill that would work was difficult. Even now a couple years later it seems that they are much easier to come by. The theory behind it is solid. All babies have a stepping reflex, which basically means if you place the child on their feet and lean them forward, one foot will automatically come out.

To hold a child on a treadmill with this reflex you are get continual eliciting of the reflex. Biomechanically, it doesn't mean much, but neurologically the benefits are numerous.
1. Increased communication between the 2 hemispheres of the brain
2. Feeding normalized sensation of what "recipricol movement" feels like into baby's brain.
3. Organization of the gross motor pathways which have connections to virtually every other area of development - the benefit of "cross patterns" are well recognized.
4. Increased proprioceptive input to lower extremities. (pressure sense, sometimes because of low tone a child will demonstrate postural instability, which means they are literally afraid to take a step because of being "unsure." This interferes with everything from walking to stair use and other higher level physical skills.)
5. I'm sure any mom or dad would find a way to turn this into a fantastic game filled with silly songs and rhyming stories set to the beat of the footsteps.....multisensory, multisensory, multisensory!
I'm sure the OT in me could continue with this list ad nauseum, but it is something I think you should know about. This isn't event a disputed benefit, the evidence is clear, treadmill training with babies with trisomy 21 helps them walk much earlier than those who didn't have the benefit. I think from a neurodevelopmental standpoint the benefit is FAR greater!
www.ns.umich.edu/htdocs/releases/story.php?id=6142

Just Came Across This Photo

I was just going through photos for a presentation I am giving and I found these.
Smart little bugger from the beginning! (Not to mention those fine motor skills!)

From the date, I can see Lucas was just over 5 months old. We started our reading program with the names of people in Lucas's life. I can not tell you how encouraged I was to see him understand and learn so quickly. Lucas has taught me many things, but the most important was never to underestimate him! (And yes I had him in a pod chair for reading time because he had to engage his back and core muscles, receive the proprioceptive input through the spine and figure out distal mobility on proximal stability, control his head and eye movements, all while concentrating on something else. No reason to just work on reading, better to use a multisensory approach and let Lucas experience several things at once! Didn't take him long to catch on, and we were sitting for reading without our handy pod chair!)

We included our reading words into the rest of our day and from the lovely dish towel on the ground I am assuming this was after dinner when I was cleaning the kitchen. The only thing missing is Noah and Ryan who would usually be putting new words up and playing peek-a-boo from behind the walls. Lucas would stretch up to see them, pushing on his little hands and arms, and if he happened to be watching them move back and forth, he would weight shift and roll over the boppy roll! I realized that not only did I not have to lower my expectations for Lucas, but I'd have to be pretty creative to keep him stimulated. He craved learning and trying new things. He still does today!

Connecting The Dots

I've not posted in a while, I have been in a whirlwind of new information and consultations. I have exponentially increased my understanding of the interconnectedness of many seemingly unconnected interventions. I mentioned in a previous post that I saw overlaps between symptoms of "the syndrome" and potential causes. I am more certain than ever that it is possible to have Trisomy 21 but little evidence of Down Syndrome.

I want to give you some new information I've obtained, but just as important as the information itself in the way I've obtained it - several unconnected sources, utilizing similar methods, achieving the same results.

I've mentioned in my blog about Kristen Morrison in Australia who has written Naturally Better, a phenomenally comprehensive book of natural supplements and techniques to intervene in our children's development before the symptoms of the syndrome become evident. She followed the programs from the Institutes of the achievement of human potential, intervened with natural supplements to maximize health and wellness (immunology being a part of that), and obtained treatments from an Osteopath (analogous to the chiropractor in the US.) I would encourage you to google her and look at the volume of photos of her son Gryffin. Besides his excellent health, cognition and physical development, he is visually very uninvolved, almost to the point that the T21 is undetectable.

I took Lucas to the chiropractor in the article I posted. He has a daughter with T21 who has had the benefit of his services since birth. She is a healthy and beautiful girl. Oh, and by the way, his wife is a naturalist, believing in natural interventions to maximize health and wellness.

We have provided supplements and vitamin therapy to Lucas from 5 months of age, used techniques based on neurodevelopmental principles, cleared his diet of sugars, preservatives, dyes and non organic food sources, and to a great degree gluten, increased his intake of essential things like glyconutrients, amino acids and enzymes, and guess what? Lucas is doing very well with minimal visual involvement as well.

That's three for three. I point this out only because I believe there is a whole movement going on, but no one is talking about it. If you wonder why, try convincing one of your child's doctors or specialists that you expect wellness, intelligence and uninvolved features (among many other things) from your child. Aside from the specialists, try convincing other parents who have only employed traditional methods and embraced the "special needs" approaches filled with compensatory techniques and albeit unknowingly, lowered expectations for their children.


I have just finished reading a written opinion that alternative approaches to neurologic problems are "irresponsible" and that no recognized medical research has ever proven any of it does anything. Admittedly knowing little of the person who wrote such a thing, I have to wonder if this person has ever thought about what she was saying. Natural supplements, gentle adjusting of the spine, vitamin therapy, Tomatis therapy, etc., are "irresponsible" and yet the formally recognized medical opinion for our children's health is to expect illness and limitation secondary to the extra chromosome, use of antibiotics, synthetic thyroid stimulating hormones and other drugs to manage the symptoms of the syndrome is responsible? Desirable? Effective? We as parents with aspirations of achievement for our children should not seek any and all methods that do no harm in effort to maximize health and development? I wonder if this lady has ever had a massage to reduce stress or taken a zinc lozenge to ease a cold. Rediculous is the criticism that stands in the way of true progress, forward thinking and success.


In working with our developmental pediatrician / naturopath (she is a rare breed indeed!) I have been learning much about the interconnectedness of things like omega 3 and speech, vitamin D and immunity, red blood cell size and the body's ability to use certain vitamins and nutrients. I have learned the most important thing I can do right now is to get a series of blood work done on Lucas so we can put the puzzle together. Naturally supplement what's out of balance so health is maximized. Why does that idea seem so radical?


As an OT I have always had respect for the fact our nervous systems control every part of our bodies and the pure structure of our anatomy can lead to nerve entrapment, tissue damage resulting in muscle imbalances, and even metabolic disturbances. Look no further than a patient with a spinal cord injury who profusely sweats, loses their hair, or has a dip in blood pressure from a change of gravitational force. The nervous system does not operate on a 1:1 cause effect basis, it is a complex series of events that control every part of us from thinking, to moving, to immunity. In researching the theory behind chiropractic care for children with neurologic disorders, I realize it is just that - a theory. But it is a darn good one. If I can maximize the efficiency of the metabolic system through a series of gentle adjustments to the spine to ensure everything is in balance, I would be hard pressed to see the downside.


In taking a natural approach, I find the overlaps are incredible. The immune system is being positively acted on by diet, supplementation, vitamin therapy and chiropractic care. Each blood test reveals one more clue, one more secret to how the extra chromosome has manifested itself in Lucas's metabolism and giving us the opportunity to supply what is deficient naturally. In turn, Lucas's cognition is enhanced by his overall wellness, antioxidant therapy, vitamin therapy, early literacy, therapeutic play, and most of all high expectations. His overall health and cognition allow him to further participate in school, social activities, and sports which in turn feed back into the loop of wellness. I could go on down the list of every part of the "syndrome" or "phenotype" and list at least 3 or 4 natural interventions which in turn impact 3 or 4 additional areas. 


There needs to be a plan, one that we are willing to talk about, one that we are willing to be criticized for by those we deeply respect. There are many new and expectant parents out there with a feeling in their gut that there is a better way. There are many who are finding their way despite the nay saying and criticism. I think of the list of things we have obtained for Lucas. All of them natural, none of them harmful. I think back to the woman who wants proof. Proof is impossible. If I apply all I know and have success it will be discounted as simply the way Lucas's genes expressed themselves. The only way I can prove my methods are having an impact is to stop them. I will never stop. I will continue to find non obtrusive ways to help my child achieve all he can. There needs to be a paradigm shift from managing symptoms of the syndrome to preventing the development of symptoms in the first place. If we understand the "why" then we can find a way. 


I keep thinking about the cognitive tests Lucas underwent this past summer. Some comments were "areas of major strength are memory and the ability to generalize information." Anyone familiar with the learning problems of children with T21 know that memory and generalization are two huge obstacles to learning. I also think about the doctor we flew to see in Baltimore who conducted research on the vitamin / antioxidant / enzyme therapy we embarked on telling me to start immediately. New thinking is that the earlier in life a child starts the therapy, the more cognitive function is enhanced. Proof? I don't need proof, I don't need statistical significance, I need to unravel the mystery and find new ways to help Lucas learn and be well..new ways that are effective and do no harm.

Article from The New York Times on Prenatal Testing

http://parenting.blogs.nytimes.com/2010/09/14/deciding-not-to-screen-for-down-syndrome/

Oral Motor Article

I have gotten many e-mails stating the link to the oral motor article could not be opened. I found it in PDF format. Try copying and pasting this whole link to your search.

www.talktools.net/.../The%20Oral- Motor%20Myths%20of%20Down%20syndrome.pdf

Expect. Don't Accept.

The following was an article I found through Kirsten Morrison at Naturally Better Kids. There are a lot of us out there, we need to keep expecting and educating!

Expect. Don't Accept. 

2009 Keynote Address by Paul Daugherty

(Paul Daugherty delivered this keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center.)

Thank you very very much for inviting me to speak to such a "remarkable" group of people. Life has given you a gift. If you don't realize that already, you will in time. I promise you.

My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

Ultimately, it's about giving your child the chance every other child gets.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

It hasn't been easy. Who said raising any child was easy? Kerry and I have blazed more trails than Daniel Boone. We have sat in countless meetings with teachers and administrators. We have spent countless nights and hours agonizing over homework assignments that were not modified for Jillian or overly dumbed-down for Jillian, you know, that kid with Down Syndrome. We have exhausted a lifetime's worth of patience in 12 short years.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

Don't put up Stop signs for my kid. Let her direct her own traffic. If you don't, we will be there, hauling you into a meeting, demanding for Jillian what you so freely offer every other kid: An honest chance. Let her tell you the height of the bar. Expect, don't accept.

Great strides are made when we remove the word No from our vocabularies, when we expand our thinking to account for the impossible. We went to the moon, didn't we? We eradicated polio, we can take pictures with a telephone. We elected an African-American president of the United States.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud.  Don't let them tell you what your kid can do. Expect, don't accept.

Let me tell you some about the life of Jillian Daugherty, young and improving.

On the harshest emotional night, Jillian Phillips Daugherty couldn't wait to get out. The occasion of her birth was melancholy to everyone but her. Jillian loved being born. Her older brother Kelly had taken his sweet time. He slept late in the womb. Fourteen hours of labor before he emerged, wary and wailing. Jillian couldn't wait to see everybody. It took less than an hour. She came out like a watermelon seed between two fingers. Hel-lo world!

I think about this all the time now, whenever Jillian wakes up early on days she can sleep late, or hears me coming into the house and screams like it's 1955 and I'm Elvis. Jillian can't wait for the next moment, the next hour, the next chance to be Jillian. Jillian wasn't born 19 years ago. She was unleashed.

When she was a couple months old, she developed mucous in her chest and lungs so thick, she could barely breathe. Jillian was in the hospital 11 days and nearly to the point she needed a respirator. Then one more in a silent army of doctors poked her in the heel with yet another needle.

Ticked her off.

Jillian screamed so profoundly, it knocked the snot from her chest.

She's never stopped expressing herself. There was a time, many, many years ago, when I yelled at her for some transgression or another. Unfortunately, having Down Syndrome doesn't mean you won't spill apple juice or try to ride the dog like she's National Velvet.

Anyway, I'm airing Jillian out. During a pause in the action, she looks up and says, "Do you want a piece of me?"

My daughter is a piece of work.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Jillian would never ride a two-wheeler. That's what we heard. She wouldn't have the coordination. Even if she did, she wouldn't have the stamina. These Down kids, you know, they're fragile little people.

Many years ago, we got Jillian a bike with training wheels. She used it for a summer. Then the training wheels came off. For awhile, Jillian's wheels came off, too. It was like a guy in Nebraska, finding his sea legs.

Jillian, being Jillian, banged into this two-wheeled business with both feet. And both knees, both elbows and a forehead or two. We spent three months learning to ride the two-wheeler. It was like cracking a code or something. Every day, I'd drag poor Jillian out to the driveway we share with three other houses. I'd help her up, get her started and hold the back of her seat as she began pedaling.

For a month at least, Jillian ran that bike the way Mike Brown runs the Bengals. She'd sway and swerve and after about a 2-yard gain, crash.

We made progress, though, mainly because Jillian has a will like an I-beam. The kid never quit. The amazing thing was, she wasn't doing it so much for her as for me. She knew how much I wanted her to ride that two-wheeler. She saw how happy it made me when she managed a few more feet than the day before. My joy became hers.

Then one day, I pushed and ran alongside and... let go. Jillian kept going, to the end of the driveway, dread mixed with elation. "Dad, I'm doing it. Oh my gosh." She was off and riding. I was in the clouds. The last time Jillian and I went riding, we did 20 miles on the Loveland Bike Trail.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the rear. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

I remember in the weeks and months after Jillian was born, listening to a Bruce Springsteen song called Walk Like A Man. One of the lines was, "I was young and I didn't know what to do, when I saw your best steps stolen away from you; I'll do what I can. I'll walk like a man."

I was wrong about that. From the instant she appeared, Jillian has never lost a step. She doesn't get cheated, to use a baseball term. Jillian gets her hacks. We quickly got over the immediate emotions surrounding her birth. Jillian, happily, never got over being Jillian.

I see Jillian with different eyes. I love her with a different part of my heart. I can't help that. But I don't expect anything less from her. And I accept nothing less than all she has.

Life doesn't let us in on many secrets. One of them is, happiness comes to those who do the best with what they have. The more we struggle in our limited, human way, to make sense of things, the more we see that some things don't come with sense included. The best we can do is the best we can do.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

It's hard. It's very hard. But we wouldn't be here today if we didn't believe, with everything we've got, that it's worth it. Expect, don't accept. Carry on and thank you again for the privilege of speaking to you today.

First Thing's First - When Everything is New

My hope is that new and expectant parents will find this blog when they need it most. I can't imagine what would have happened to our journey, how irrevocably altered it would have been, had I not been lucky enough to stumble upon some incredible information in the very earliest of days. Indeed, although traditional practitioners formally put very little credence into our methods, they are off-the-record impressed with our journey and in fact believe that starting as an infant gave us an advantage rather than waiting to see what would unfold. It is my opinion that if you wait for a problem in our kids they will come, and then it may be too late to intervene. 

The following are absolute must reads, as quickly as you can get them and read them - they will completely change the perspective with which you think about Down Syndrome and start you on an amazing journey of wellness and achievement.

1. BEFORE YOUR BABY'S NEXT FEEDING, READ THIS ARTICLE!

A speech pathologists outlines a theory as to why the classic "open mouth, tongue out of mouth, jaw protrusion" image we all see when we think of adults with DS is preventable with a simple positioning change when we nurse or feed our babies. As an OT it made clinical sense to me and I implemented it throughout Lucas's first year. You can scroll down to see pictures of him today, none of the aforementioned traits are evident and indeed all of his oral motor structures are formed perfectly, even his teeth alignment. He has never had an ear infection or difficulty eating. Maybe just genetically blessed, but I think that a lot of damage could have been done had I nursed him the conventional way. You can e-mail me at geralynOT@Yahoo.com if you'd like an explanation of how I did it, but I think you'll get the idea!

http://www.kidscanlearn.net/down.htm

2. There is a place in Philadelphia called The Institute for the Achievement of Human Potential. They treat ALL developmental delay as a brain injury, including DS - which is a good thing because the commonly seen limitations in adults with DS should not be viewed as a given, rather a map of where to intervene. As an OT I realize that you can work on eating, fine and gross motor development, cognition etc. after problems have arisen, but unless you actually change the way the brain is working, you will never see true change. They have a plethora of literature that you will find yourself compelled to read, but you absolutely should begin with "What to do About Your Brain Injured Child." While you're on the website look around. You will not find any mention of limitation or lowered expectation. Their methods (Developed by a Physical Therapist and a Neurologist originally) find ways to actually help the brain create connections. - This will lead you to the discussion of early literacy (The Institute's book "Teach Your Baby to Read). We started the reading program when Lucas was 6 months old. Today he reads tons of sight words and we are putting them together into little books for him. Not only does stimulating the pathways for reading help with literacy but with memory and a whole set of other things classically seen as part of the "syndrome."

 http://www.iahp.org

3. This isn't anything for you to look up, just one simple heartwarming fact. There are currently over 200 families on waiting lists to adopt a baby with Down Syndrome. Many of them are families who already have a child with DS. I have read some waiting list estimates of up to 5 years! I have considered it myself.

You will not find many specialists who share this view, in fact I read one article written by parents talking about how much richer their lives are since the birth of their child, how things like marriages and other sibling relationships have actually been strengthened. At the end of the article was a specialist warning that parents tend to paint "too rosy a picture." Well, who should I have believed? The doctors, or the parents who are spending their time and effort to tell the world that their perception of trisomy 21 isn't correct? I once read an op ed entitled "Down Syndrome is no big deal" written by a dad, I laughed out loud thinking about the doctors and specialists who probably wanted to have the man committed!

4. Read my blog about vitamin therapy and read this book ---- TODAY!

Vitamin Therapy and Down Syndrome; Unlocking the secrets of improved health and behaviour.

Finally, let me be one of the first to wish you a heartfelt congratulations on the birth of your new baby. I know how difficult this time is for you, but believe me, it wont be long before that beautiful new life is going to start amazing you and fueling a fire for you to find more and more for him! 

The Gift

It's 11:28 pm and I just finished wrapping all of the birthday gifts we have picked out for Lucas. Noah and Ryan picked out a game that they would like to play with Lucas and I chose the "next level" gifts. First Mazes workbooks to begin tracing and printing, new flashcards, and of course the ultra cool Leapster palm pilot fully equipped with stylus and all.

I imagine most moms can't help but reminisce about the day of their child's birth and the memories that shape that day each time their child celebrates a birthday. The feeling of the warm and wriggling new life being placed in my arms for the first time is one of the rare times I've gotten to experience a true miracle in my life. I remember each time it happened having the thought cross my mind that I now have yet another human being I would willingly lay my life down for.

Lucas's birthday takes me on journey each year. When I was pregnant with him, I began to have periods of time where I couldn't breathe...at all. This would progress to chest pain and my heart thumping so loudly I couldn't stand it. After being woken up several times, I began to realize it was fear and although I had many tests, including a level two sonogram that ruled out all chromosomal abnormality, I knew something was wrong.

It all culminated the day before Lucas was born, ironically my husband's birthday (Happy Birthday Honey!) and I had to go into the hospital overnight with an induction scheduled for the morning. I remember laying perfectly still and awake the entire night, pleading with God to let me live through whatever was coming, because I was needed. In the morning the nurse told me I could take a shower before the induction. I stood in that shower, literally feeling the fear wash down the drain with the water. I felt strong and certain of myself. I remember thinking it was such a relief to finally feel that fear leave my body.

Indeed through my whole labor I felt this strength, as the pain ripped through my body I used it to fuel an energy I had, a sense that I was in control of this situation, a certainty that this child was coming and he needed me.

The moment I delivered my son was the highest high I'd ever felt. He was alive and crying with great Apgars and I was fine. I was also certain something else was coming. As they placed that new life in my arms I watched him, beautiful, sweet, brand new, able to latch on, swollen and small. That was the first time in his life that his beautiful blue eyes that sparkled like diamonds betrayed him. I knew. I told Sean I knew and everything changed. Nothing would ever be the same.

Today, I think about that day and all it's events, I think about that new life that was given to us, how we were told he would ask so much yet has done nothing but give, the life we was told would be slow yet we've had to catch up with, the life we were told could burden our marriage and other children yet leaves us wondering how we could possibly exist without, the life we were told would have difficulty learning yet has been the most impressive teacher.

It is now 12:07am and it is officially Lucas Christopher's birthday. What I wouldn't give to have that brand new life in my arms again, to repeat all the promises we made and know we were keeping every last one.    

I Love You Lucas, Happy Birthday!

Do No Harm

The American Medical Association, most National Down Syndrome Associations, and many "specialists" agree. Natural vitamin / antioxidant / enzyme / nutritional therapy is a waste of time and money. Their carefully designed clinical studies proved these supplements do nothing. I'm sure you have heard the arguments and debates on the merits of each side. When Lucas was 1 month old, I did. I read a book by Kent MacLeod Vitamin Therapy and Down Syndrome and I was fascinated.

I tried to marry my list of potential health problems with the overriding premise of "Do no harm" and the commonly accepted, endorsed methods by the AMA and APA. Chronic infection? Antibiotics, sometimes taken daily as a form of "maintenance therapy." Chronic breathing problems? Steroids. Problems with attention? Any array of drugs used to "balance out" the brain's chemicals. Thyroid dysfunction? Synthetic hormone. The list goes on and on.

I started to get angry. I was being told about the likely health complications of trisomy 21 and the acceptable answer was drugs that have proven side effects and drugs that have proven to make immune systems weaker and more dependent? I thought the goal was wellness, a term I have yet to hear applied to children with Trisomy 21 from any specialist. And when valid and impressive research goes into natural methods, we who opt for that route are made to feel like foolish and desperate parents who are in denial.

Here is what I know. The scientific community has tried to study the effects of nutritive therapy methods only to have their study produce no statistical significance. Their diligent methods devised to measure each capability pre and post therapy proved nothing. So while the medical and scientific communities were out trying to convince people that this is nothing more than quackery, the real specialists in the group quietly "published" their results. Interestingly enough, when the study ended the parents of the children who received the supplements refused to stop them.

I am not going to give scientific pros and cons in this blog. There are many sources out there for you to find if you've not done so already. The bottom line is that outside of the surgical intervention to correct heart defects, the established medical practices have done very little to improve our children's health. Instead they opt to respond to illness, respond to infection, respond to alopecia, respond to eczema, respond to obesity, respond to hypothyroidism. I'm sorry, I thought the goal was prevention, but as with everything else pertinent to our children with Trisomy 21, response to delay and dysfunction is all that is offered.

Why is hypothyroidism common to people with Trisomy 21? Why does their immune systems seem helpless agains URI's? Why is thinning hair a common trait? Why is eczema something we see starting in early childhood? If we took our children without Down Syndrome to the doctor with these complaints, we would be in for a lengthy hospital stay full of diagnostics to figure out how to prevent these things from occurring again. But when we bring our children with Down Syndrome to the doctor we receive the pity smile and gentle phrasing of the basic premise "that's what you get with Down Syndrome."

There is a "why" and better yet, there is an actual way to intervene that does no harm. Natural immunity boosters and natural food source vitamins formulated in specific formulas for our children maximizes health. The link between Down Syndrome and Alzheimers is a well established one. If the medical community is willing to entertain the notion of antioxidant therapy to reduce the oxidative stress in the brains of people with Alzheimers, why is the option condemned as quackery when we introduce it to our children before learning difficulties, memory difficulties, and behavioral changes occur?

There are also dissenting views from other parents. One of the big arguments that literally takes my breath away is the position that we should love our children unconditionally and not try to change them. Sincerely? We should not strive to maximize our children's health? What about education? God forbid anybody brings up the topic of appearance. When we try to minimize facial swelling and exaggeration of the palpebral fissures, protruding mandible and flattened nasal bridge with positional changes, use of natural nutrients and vitamins, we are attacked for not accepting our children for who they are? I bet those attacking us have taught a daughter to put on make-up at one point or another, or shelled out a small fortune in orthodontia to improve teeth alignment and smile. Like it or not, our children can be the best and brightest but will not be given a fair chance socially based on their appearance.

I can only tell you my experience. I traveled to another state to meet with a doctor who had worked on such research projects. He formally and officially told me not to waste my money. Then off the record, he told me to start supplementing immediately. We started when Lucas was 5 months old. His skin is beautiful, his hair thick and wavy, never had a bout of constipation in his life, maintains good thyroid levels, rarely gets sick except for URI's which I am currently having him evaluated by a naturopath for a method to safely boost his immunity to such viruses. Beyond that, my son's behavior most days puts my 6 and 9 year old to shame. Not a day goes by that I don't wonder how it is that Lucas is the best listener in the family. Lucas has no sensory issues and has already successfully completed a two year old preschool class with no problems. In fact, he was one of the most independent kids in the class. You've already read about his ability to learn and remember and I've had a doctor ask me for clarification on the "type" of DS Lucas has. It is in fact standard Trisomy 21.

As with anything else, why isn't the goal to intervene before a problem arises. If I know breast cancer runs in my family am I not diligent with mammograms? We have gone from the days of Langdon Down who hypothesized that down syndrome was a result of arrested development, to the discovery of the extra chromosome and a clear picture of what the overexpression of genes can potentially mean to health, to....what? Nothing more? We should accept there is nothing more to know?

I do not accept that. I find more and more people everyday who do not accept that. Interestingly enough it's like talking politics at Christmas, the words "Nutrition therapy" or "alternative approaches" must be tiptoed around until you know who your audience is. The hell with that. Our physicians must be held accountable. I've never believed in conspiracy theories, but maybe there is something to the relationship between drug companies and physicians. If nature holds they key to optimal health (for all of us really) there is no money to be made off of it.

If you are a new or expectant mother you need to know all you can about such interventions...quickly. Kent MacLeod's book can be bought inexpensively online (Vitamin Therapy and Down Syndrome; Unlocking the secrets to improved health, intelligence and behavior) and Kristen Morrison's book Naturally Better. 


I welcome debate on this entry and all the rest. We will only change the future for our children by opening ourselves to criticism. By shunning the "special" offers, by demanding an explanation of why our children get sick, and fearlessly telling anyone that we will find a better way.

The Down Syndrome Action Plan Group on Facebook

http://www.facebook.com/group.php?gid=144472818918759&ref=mf

We are up and running on Facebook, where parents can share knowledge and information on strategies for  their child's wellness and achievement.

Read Baby, Read!

One of the first things I learned about when Lucas was born was the concept of literacy. OK, maybe that's a bit understated, Lucas and I started our sight words before his first birthday! The theory is that a child learns the spoken language through his sense of hearing, but if you combine the spoken word with the visual (and even tactile as I would put huge felt letters together for Lucas to feel!) You not only are teaching concepts, but you are literally exercising a part of the brain that will be critical for learning and memory later on.

I've read many criticisms of this sight word method saying that the children are not actually reading, rather memorizing the word. I can't help but think the latter is actually a higher skill. Do we phonetically sound out each word we read? We can recognize what a word says simply by the shape of the word, indeed even if some letters are missing we still can understand what it says.

My goal was never to turn Lucas into a baby genius. I had a good understanding of the learning difficulties commonly seen later in life of people with T21, along with the new theories that the basis of the difficulty lies in short term memory. I looked at our reading programs as way more than teaching words per se, we were actually building pathways and connections in the brain that would support learning later.

What I didn't expect was at a very young age, Lucas would choose his books over any other toy. He would orient the book the correct way, run his finger over the text, left to right, and would actually point and focus on a word he recognized. We progressed with our program and today we are putting the words he knows into sentences, making little books as we go.

I am also amazed at his ability to learn - and remember. I mentioned in a previous blog that he had taught himself the map of the US.  This started one day with Lucas finding the map and turning it on. I heard him methodically press the same state four or five times and then move on to the next one. He did this relentlessly for a week, and I began writing down all the states I heard him pressing. At the end of the week, when Lucas took out the map, I sat down with him and asked him to press a state I had written down. He got all 15 correct. Today he knows all the states.

Lucas and I would turn learning time into fun time, we did this with colors, shapes, numbers, letters, and many other things. Now we are learning the presidents (he's up to 11!).  Learning time wasn't a chore, it was fun, and watching my small child accomplish things I sat and wondered on the day of his birth if he would ever do, is empowering.

We can accept that our children are destined to have difficulties learning or we can question why, take advantage of modern theories of learning and brain development and use the information to help our children continue to learn and achieve. It starts with our expectations as parents. If we expect our children are going to be intelligent and educated, then we will provide opportunities for them to learn. The journey begins with honestly believing our children can achieve.

An Uncomfortable Necessity

Lucas at 29 months

Fifty years ago people with Down Syndrome were labeled and put into institutions, but over time there was a movement to bring awareness and show the amazing potential of these people to society, in a concept, the word "special." With all respect and appreciation for the foundation laid by these pioneers and the dedication of those who pushed down walls and forced society to open their eyes, I submit it is time to move beyond the word "special" and forge the next chapter in history for our children.

It is no different than the old ugly labels, except it gives society a cleansed word, a compassionate word. My son does not need pity or compassion, he does not need to be recognized as any more "special" than his brothers and peers. He needs opportunity. An equal one. The message we send our children when we allow them to submerge into a world of special schools, special classes, and special opportunities before we give them the chance to succeed or fail on their own merits isn't that they are special. We are telling them that they can only ever hope to fit in other "special" worlds and worse yet, we their parents expect no more.

A wonderful local ski club generously offered a local T21 group special ski instructions for their children. A very genuine and thoughtful gift, it was very well received by the group and left me wondering why. When Sean takes our older sons to their ski lessons, what lesson does it teach while the "regular" kids are all geared up and ready to go standing at the bottom of the hill waiting for the "special" class to end. 

There is no question that with things like lower muscle tone and potentially decreased motor skills there would be a need for one on one instruction, as a therapist I get that. Why then, would the club not simply allow the "special" children to ski with the regular ski group and add the extra staff that was needed to run the group anyway? We have come so far as a society, yet when it comes to our children we do not question the fact that separate is not equal. Take away the word "special" and insert any other group separated out based on ability or appearance and we would be crossing a line called discrimination.

I respectfully submit that the lure of "special groups" is not to give our children a secure place, it is to wrap us, their parents, in the warm blanket of acceptance, where no one will judge our children - or us. We feel kinship with those who are in our "group" and we even feel superior to those without a "special" child because our goals are loftier. We do not have to acknowledge the differences between children when we are surrounded by other special families. I thought differences were good. I thought different people with different abilities and different gifts and contributions are what make life rich. 

One hundred years ago no one would have been able to conceive of a day when people with T21 who couldn't even perform basic self care tasks, would go to school, compete in sports and have jobs, even in the special realm, yet they have for 40 years. I think it would be foolish to think there is no more to be achieved, that these intelligent and charming babies can not continue their path of achievement if we, the ones in charge of their growth and development expect it and provide opportunity.

 If we reject the notion that all behavior issues are due to the T21 (ask any mother of a 2 or 3 year old!) and actually teach appropriate behavior the way we do to our other children, to reject the offer of an classroom aide when our child enters preschool and give him a chance to manage his own day, to reject the special art and music classes and submerge our children in the actual world they will have to live in as adults. A funny thing happens, when we expect it - it happens. 

Some would point out that not all children with T21 are capable of such endeavors, to that I would gently point out that there are many without any diagnosis who can not either, that doesn't mean on the day of their birth we should resign ourselves to lowered expectations. That changes the way we teach and raise our children.

On this very day, Karen Gaffney who never sat in a special ed class, went to private school, graduated from the oldest all girls academy in Portland Oregon, went to college and formed her own self named foundation, is swimming the length of Lake Tahoe for charity. In researching her story I found that the driving force her entire life was her parents, who refused to lower their standards and continually found ways to help Karen achieve. Isn't that what all parents do? There is nothing special about it.

"Down Syndrome" a Euphemistic Stereotype

This is Lucas. He is 3 years old, he is my reality of what T21 means, and more importantly what it does not mean. He is healthy, funny, and smart. His most recent accomplishment is teaching himself all the states on his older brother's interactive map. (I am hoping to post a video clip, but my blogging skills are not quite that sophisticated yet!) If I told the doctors and specialists, much less myself, on the day of his birth that I expected such things they would have thought I was crazy.

Sadly, when Lucas was born and I learned of the Trisomy I was devastated. Anyone who has heard those words applied to their child knows the utter depth of pain, there is no need to describe it. After a couple of weeks and a few hard days in the hospital, Lucas was cleared to come home, thankfully none of the feared health related concerns were an issue for him. I will certainly write more in later blogs about our concerted effort to shape our own perceptions and those of of family and friends as this was a critical first step. We knew that we would move beyond the trauma, but if we "broke the news" to our family and friends in a sad and grieving way, they would not. That day, my husband Sean gave us the greatest gift we had ever received. While I for the most part was still in shock, Sean picked up the telephone and dialed every family member and friend he could. The message was clear: "We have a new beautiful baby who is very healthy. There is a possibility he may have Down Syndrome, but we can't wait for you to meet him." Sean put Down Syndrome in it's place; behind who Lucas was, behind his name, behind his health and beauty - right where it belonged.  As insignificant as this may seem, it was important to begin believing what he said.

I still couldn't shake the images the words "Down Syndrome" conjured up, the images that we all see when we hear the words. The history of the phrase is quite interesting. In the late 1800's Dr. Langdon Down ran An Asylum for idiots. He noticed that a certain group of people shared common features, basically they looked a certain way. We know the list; facial features, hair loss, obesity, open mouth with tongue thrust, on and on. He grouped these people together and named their "syndrome" after himself. It wasn't until 50 years ago that the mystery unraveled and the trisomy was discovered. Now we have a true diagnosis, it's time to abolish the old labels. "Down Syndrome" and the more disgusting "mongoloid" were born of the same era - an era in which people who looked a certain way were deemed hopeless by society, and were sentenced to life in an asylum which offered no hope, no love, and no intervention. I propose we move beyond stereotyping people by the way they look.

By understanding Trisomy 21 and how certain features can develop over time, we can intervene before they evidence themselves. That is why T21 is the way in which the trisomy will be referred to in this blog. Our children are not Langdon Down's children, they are not limited by what specialists and society expects of them today. They are smart and very able to learn, if we are willing to believe they can!