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!