More Inspiration??? I've Got You Covered!! This One Is About Speech!

Have you ever wanted something so bad that it almost consumed you??? Have you ever prayed, wished, asked, searched, longed for something so hard that you didn't...you couldn't...imagine that it would not happen. Well...that was what Sam's speech, his ability to communicate was like for me.

Sam's diagnosis of Down syndrome was one of the most difficult points in my life. To this day I can feel the depth of emotion I felt when the doctor softly closed the door and said, "Jeff and Sue, I need to tell you that I am almost 100% sure that Sam has Down syndrome...". Our pediatrician was compassionate and caring and he gave us this news in the most gentle way possible and yet the emotion of that day is still with me 11 years later.

A month later I was told in the ICU that my son had a brain injury. After that point I learned Sam had dysphagia and respiratory/immune system issues. Each of these diagnosis hurt just as much but I began to hope that they offered me some information or helped me figure out the difficult puzzle that is my son. I needed to learn how to help Sam eat and drink safely. I had to understand the defects in his respiratory system and how his diagnosis of dysphagia and a comprised immune system made this even more complicated.

In between all this craziness...I needed to love my son, I needed to enjoy my child. It was only by the grace of God that I managed to do that. All of us have probably experienced what it is like to try to figure out what is wrong with a screaming infant. During that experience you are panicked, you feel that you lack any control, you are frustrated, maybe even angry that you can't figure it out, you desperately wish that child could just tell you what is wrong. Now imagine that infant having special needs or special medical considerations...turning blue, stopping breathing and you have to be able to relay everything to the doctor, quiet your panic, focus on the now and help problem solve along with the medical staff. Now imagine that the child's inability to communicate

continues for years upon years. As a parent of a child with special needs and medical issues I have had to become an expert on Sam. I have had to find and work with a pediatrician that is also an expert on Sam. This pediatrician and I have to put together the very intricate pieces of this amazing puzzle that I know and love as Sam. We have a team of experts that are knowledgeable in their particular areas but it is up to us to connect the dots, consider the options and make the difficult decisions.

When I began this journey with Sam...my real fear...the thing that kept me awake at night was the cognitive challenges that Sam was going to face. I was very naive early on, I didn't know or

understand much about Down syndrome but I was soon to find out that Sam had a lot to teach me. After Sam's brain injury I was told about the added challenges that would affect his chance of walking and talking. We worked hard to get Sam first army crawling, then 4 point crawling and finally walking. At the age of 3 1/2 years old Sam was walking and I assumed now that we had finished that physical goal his speech was soon to follow. Therapists had told me that often times when a child is making physical gains their speech and fine motor skills may drop off.

Sam had sounds...grunts, groans and some animal sounding utterances. And then we heard Da Da and figured we were on our way. But speech eluded Sam. He had sounds and as we worked

on the letters of the alphabet I noticed that if he watched my mouth closely he could make approximate sounds...but there were no words.

Each year my mom and dad would pray that a Christmas miracle would happen and Sam would begin speaking and each New Year would come and go with no speech. I was the receptionist for our NACD chapter and I watched children with Down syndrome come in that were so much younger than Sam but were already speaking words, phrases and even sentences. When we took Sam to a new speech pathologist at the age of 4 his report showed him to be apraxic and non-verbal although he had been in speech therapy since he was 6 weeks old. I loved and valued each

of our speech therapists over these last 11 years. Each of them has helped me understand and has brainstormed with me ideas regarding Sam's speech, feeding and language challenges. But I learned long ago that therapy appointments alone were not going to make the change I desired for Sam. He was going to require daily work and encouragement. I felt a combination of therapy and our home program was our best bet to get Sam talking. I began to study up on everything NACD had available on speech production. The process of producing speech and understanding language affects so many different areas, so many things have to be working properly and when I looked at and thought about Sam I knew so many areas were broken or needed work. To learn more about speech and language in children with Down syndrome please reference this article.

To this day I continue to believe that if your child with Down syndrome begins to follow a natural speech production curve and even if it is at a slower pace you have won the lottery. Sam's communication challenges far exceeded his cognitive challenges but it was so difficult to get people to understand that Sam was smart because he couldn't speak. I myself had doubts at times on how to figure out what Sam knew and understood without the benefit of speech or communication. But I became an expert in reading Sam, his actions, his body language, his non-verbal and verbal utterances. I had to become an expert in order to know when Sam was sick, getting sick, hurting or what his needs and wants were.

My biggest teaching challenges had to do with figuring out how to engage Sam, then how to work with Sam and finally how do I figure out if Sam truly understands something or not without testing him. My ability to observe was heightened, my listening strengthened and I learned how to be fun and both visually and auditorally stimulating. Now if Sam could really sit down and talk with you I'm sure he would tell you I still have a long way to go.

I try to figure out what works for Sam, what he reacts to, what he engages in and then I try to expand it. I have learned that short spans with a lot of breaks works for Sam. In the early days if I was not going to be fun...Sam was not going to engage. If the task became a chore, Sam bailed.

If I talked more than I demonstrated he just tuned me out.

And yet...I dreamed...I dreamed of being able to sit and talk with Sam. I wanted to communicate with Sam more than anything else. How was I going to teach a child that couldn't communicate, how was I going to know what he was thinking or feeling? I wanted to hear his voice. I wanted to have a conversation with my son. My gut told me that something was wrong with Sam's hearing, Bob and Ellen Doman from NACD confirmed these fears. To understand our journey to allow Sam to hear please click on this article.

Our many feeding issues told me that Sam's oral motor area was broken and that we needed to focus on strengthening his jaw and work on his oral issues and sensitivities. Sam's respiratory issues affected his breathing and breathing is a part of speech. We continue to work on increasing Sam's breath capacity. After living through quite a few swallow studies and having visited the option of facial distraction surgery we were relieved to find out that Sam could indeed put his large tongue in his small mouth, close his mouth and continue to have an airway. But that large tongue was even more of a hindrance in producing good speech.

But I wouldn't give up...I couldn't give up on Sam. I looked into sign language and quickly figured out that Sam was a master at signs. But there was something else I noticed. The more I used sign, the less sounds Sam made.

Another area in Sam's journey to speak was sight word reading. I jumped into teaching Sam sight word reading at the age of 2 and I'm glad I did. When Sam began to speak his reading accelerated the number of words he attempted to say. His reading also helped with his articulation. He did not pronounce the last sounds in a word until he began reading words. To learn more about how Sam learned to read click on the subject reading on the right hand side of

the blog and you will find a number of posts showing how we started Sam reading, video's of Sam reading and how we work on his comprehension.

In my research I came across the book Communicating Partners and Dr. James MacDonald. I realized that his ideas were often incorporated into my NACD program but he went more in depth on areas that made sense to me regarding Sam's speech production. All of the physical stuff was a part of Sam's delay but Sam also needed to understand the power of communication and I needed to understand how to connect with Sam. I needed to enter and participate in Sam's world in a way he could relate to. I needed to speak to him at his level and add on so that he knew I understood and wanted to communicate. When I spoke to Sam above his level I would often equate that to the old Charlie Brown specials when the teacher would talk and all we would

here is "Wa wa wa wa wa". That is probably what I sounded like to Sam. To get Sam really talking I had to stop asking questions and participate at his level talking about things instead of testing him. I had to be interesting, fun and childlike. When I work on academics with Sam I always make sure to use both verbal and visual communication. Questions and answers are written out so he can both hear and see them.

We are always told to read to our children...Sam was the most uninterested child I ever came across. But think about it, he couldn't hear well, he struggled with language and all that experience really had going for it was a potential for good visuals and possibly some quality time with mom although her lips kept moving and nothing made sense. At the age of 11 with his hearing aid Sam is finally getting the concept of books and that there is more than just pictures,

the words are telling a story. Some stories are now worth the effort of hearing and processing and some are not. We are now working with the program Raz Kids which has animated leveled books that can be read to the child and the child can record themselves reading the book. Each book also has a comprehension quiz. It takes Sam a couple of times to hear the book and then read it himself in order to achieve a good level of comprehension.

Each of these steps was needed to get Sam talking. The process of getting Sam talking was slow and tedious and we still have a lot of work to do but Sam is speaking. The early years of wondering if my child will ever speak is now a distant memory. Our attention is now spent on articulation, turn taking, listening and responding (conversing). He likes to talk at you and because both hearing and speech production is work for Sam he will only talk for short periods of

time. But having gone through this process I have become a better listener and I have a learned patience and ability to withstand hearing the word "Mom" a million times a day. I cherish it...I cherish the fact that Sam's "I ah oo" has slowly become "I love you". I cherish each and every interaction I have with Sam and although I have had moments of wishing for peace, just a little bit of peace, I am thrilled that we have come as far as we have and I look forward to what the future holds.

I was reluctant to put Sam in a school setting because his speech was so far behind. It wasn't just the thought of him not being able to tell me what happened in school although that also scared me a great deal. I also wondered how he would be able to communicate with his class mates because Sam requires you to be patient and it is work to talk with him. How many kids want to put in that time and effort? I knew he needed to attempt sounds and speech often and with someone who could join in with him at his level and assist him. He needed to practice and he needed to practice a lot. Sam's speech was just beginning and first developing after the age of 5 and he needed to practice his sounds, words and communication similar to that of a toddler. I would never tell a toddler who is first experimenting with language to be quiet and I didn't want anyone telling Sam that either. I didn't want Sam to sit quietly in a classroom, I wanted him to express himself whenever and however he could and when we had mastered those interactions I knew we could then work on understanding how and when to be quiet. We are not to that point yet. Sam is still working on figuring out how to express himself, how to listen and how to communicate. And yet when Sam attends church he is quiet except for the occasional "Mom go home, pastor all done". His experience in church assures me that his understanding of when to

be quiet is something he will be able to do.

But right now I want him talking and I want him talking a lot. He has so much to figure out about this communication thing. I remember when Ben was younger and I often received a call or email from the teacher regarding Ben's disturbances in class. Ben was often caught thinking out loud. But that thinking out loud is what helped to give me a brief picture of what actually happens in the mind of my child and one of my greatest desires is to spend a half hour in Sam's brain, hearing how he hears, processing how he processes, speaking how he speaks. That half hour would teach me volumes on how to talk with Sam, how to work with Sam and how to understand Sam. So when Sam thinks out loud, it might be confusing or irritating to other people but it gives me that snapshot, that little piece of information that helps me understand Sam.

Sooo...I encourage Sam to talk and talk often. To the average bystander Sam would seem loud, somewhat rude because he interrupts all the time and he is a very poor listener. But that is because they are looking at Sam as an 11 year old. I know the path we have been on, I understand the challenges Sam is trying to overcome with his hearing and speech issues. I acknowledge where Sam is at with his speech and language development. The only way Sam is going to become a talker, a communicator is to practice that skill. Can Sam's constant need to express himself be challenging? Can Sam's interruptions be difficult? Can Sam's lack of active listening drive you crazy? Can Sam's impulsiveness be demanding? Yes, Yes, Yes and oh Yes...but then I remember a little boy that didn't speak and I remember my desperate plea and dream to converse with Sam and I grab a whole new bucket of patience and work through it. We still have a long way to go but we are moving forward.

What helped me help Sam to speak was to first understand how we produce speech and have any concerns with Sam addressed. I had to encourage Sam's sound production by repeating his sounds and helping him turn them into language. By repeating Sam's sounds or utterances I was in fact validating his need to speak and communicate. I was showing him he was interesting and I wanted to understand what he was trying to say. Through play we turned noises into sounds and then into words. When I asked Sam questions he shut down. When I talked in long sentences he shut down. When I tried to monopolize the interaction he shut down. I labeled things for Sam but

didn't require him to verbalize, he could show me he understood by pointing to it. If he attempted to verbalize, I repeated what he said and then said the word correctly.

The process to get Sam speaking has been a long one but well worth the effort. Just recently Sam overcame another one of my fears. When you begin to wonder if your child will speak simple things like using the phone become yet another concern or hurdle. Sam had multiple issues with the telephone. His hearing issue made listening on the phone difficult. His fine motor issues and low auditory processing made dialing a phone difficult. But devices like the telephone and skype are wonderful ways to help a child work on their speech and language. So I did some research (it's what I do) and came across a phone that seemed to be made just for Sam.

Notice the large numbers for easy dialing but the really cool feature is the picture dialing. You can program 4 numbers into the 4 picture buttons. This phone also comes with a boost button to help Sam hear the conversation better. Sam was excited to try it out and I hope to show how his conversations will expand. As you can tell from these videos he is a man of few words.

First a call to Daddy!

Then a quick call to Ben!

And finally checking in with Danielle!

Now for your viewing enjoyment here is my no longer non-verbal son watching "The Pacifier" movie with me.

Watch it a few times and each time you will pick up more and more words (well, you will if you know the movie well). Even when I watched it I couldn't believe how many words I missed. Makes you want to watch it just so you can see all the things Sam is reacting to, huh???

What I love about this video is how much of Sam's personality shines through. He wants to communicate, he wants to interact...putting all the pieces together to form good speech is and continues to be a challenge but we have come such a very long way!! Good Night Everyone!

A Little Inspiration!!

Over the past few weeks I have been in research mode and caretaker mode. Researching more about Perthes, AVN and hip replacement along with looking at a better walker setup and a wheelchair that is light weight to help save my back and allow Sam to begin wheeling himself around. Caretaker mode continues because of Sam's pain issues and my other 2 children decided to throw in a few illnesses too. They hate to see me get bored.

Sam's medical issues, home program, schooling, therapies and doctor appointments can be overwhelming at times and I can get caught in the day to day routine of just getting through. Instead of focusing on the day, the now...I feel like I'm in auto-pilot and I'm getting him where he needs to go, administering supplements and medication, holding to the diet, checking off the program items but I'm lacking the passion and the intensity to make change happen. The house cleaning, laundry, meal making task and other basic life functions begin to nag at me. I'm tired, I'm frustrated and I begin to dwell on the challenges instead of working on the strengths. My attitude begins to turn...and I'm unhappy, sad at times and just so very, very tired.

But then along comes Sam with his Ipad and he begins to show me pictures of himself as a baby, our family vacations and roadtrips, the playground project, gatherings with friends and family... He goes on to show me the pictures of his homeschool projects, fun unit studies and then as quickly as he appeared he drifts off after he comes across his favorite Ipad motorcycle game. I watch him walk away with his Ipad on his walker tray and I have to smile. This little boy that struggles to hear and speak read me like a book, he heard my unspoken hurt and he took it upon himself to show me my blessings.

In my next couple of posts I want to share some of those blessings with you and I hope you will be as encouraged as Sam made me. As Sam and I looked back through his baby pictures I couldn't help but realize how far we have come. It's funny how a picture can take you back to a moment in time and your brain has the ability to visualize that moment as if it were happening right now. One of the pictures Sam showed me was his baptism picture. I remember standing in front of the church, how slippery Sam's little satin outfit was and how I was worried that he seemed to be getting sick again. We had just gotten out of the hospital the week before after Sam struggled with a respiratory virus. The evening of Sam's baptism was Jeff's Christmas party for work. I remember wanting to go and not wanting to go, part of me wanted to escape and just experience a normal evening out and part of me was worried about Sam and that feeling I had that he was not okay. This was one of the evenings that I learned you should always follow your gut. I will never forget the frantic call I got from my Mom as she asked us to come right home because Sam didn't seem right. She described him falling asleep and he seemed to stop breathing until she startled him. My parents left and I sat holding my newly baptized baby wondering why God would allow something like this to happen on his baptismal day. I didn't have much time to think about it because the episodes began to happen more frequently and I found myself rushing out the door and headed to Children's Hospital's ER. Sam was in trouble and my fears were confirmed when he was admitted to the ICU. Sam continued to have breathing issues and a tube was inserted in his nose to send a signal to the brain that he had another airway and he needed to use it. I remember sitting next to Sam's bed praying and then hearing a commotion out side of Sam's door. I looked up as they wheeled an older girl with Down syndrome past our room, she was coughing and having a hard time breathing. I remember thinking...is that what I have to look forward to, is this what life with Sam will be like?

The doctor came in and began to review Sam's condition with me. I was tired, confused and more than a little scared and I remember trying so hard to focus on what he was saying. At first I thought he was just telling me about the delays common with a child with Down syndrome but then I realized he was telling me the delays I could expect with a child with a brain injury. He was telling me that Sam was going to have further delays, the words "may not walk" "may not talk" "right side weakness" "infant mentality" drifted past me as if he were talking about some other child. My eyes filled with tears as my heart screamed "Please be talking about some other child". He showed me the reflex difference in Sam's left leg compared to his right leg and his left arm compared to his right arm. I nodded but couldn't form any words. I heard the terms anoxia, aphasia, acquired traumatic brain injury, dysphagia, flaccid tone, hemiparesis and so many other terms I had never heard of. And all I could do was look at my baby, block out the doctor and tell Sam "You're going to be alright...we're going to be alright, Sam". "We will figure out how to do this." The doctor gave me the "I'm sorry" expression and left the room. As I played over in my mind what the doctor had said a seed of anger began to take root. I wasn't angry at God, I was angry at the predictions I had just heard of everything my child was not going to be able to do. How could they look at my perfectly imperfect child...my baby...and know what he was going to be doing in 2, 3 or 5 years? Where did they get their crystal ball?

That little seed bloomed into a full blown...I will prove you wrong. With the help of NACD Sam bypassed most of their expectations by the time he was 3 years old and it was at that point that Jeff and I could dream again about Sam's future. Along Sam's 11 years of life I have met many a "nay sayer". Those who told me I was in denial, what I wanted and Sam's reality were two very different things. Sam's lack of speech was a direct indication of his inability to learn. They tried to scare me, deter me, intimidate me and request that I lower my expectations. I don't believe in testing, I believe in observing to determine where a child is at. I don't believe that Sam can't learn something or do something but instead his failure is a direct reflection on my inability to figure out how he needs to do something or how to teach him. Sam learns differently and the process of figuring out how Sam learns is my greatest challenge.

I was just talking with a good friend about nutritional intervention and really this applies to any intervention. When Sam was little I so wanted to find that quick fix...that therapy, that program, that medication or supplement that was going to excel him, move him closer to normal and actually I wanted him to surpass normal. I wanted him to be that super star kid with Down syndrome that everybody reads about and is amazed by. But our path had taken some very different turns starting with the dual diagnosis of Down syndrome and brain injury. Then we added his hearing issues and now a physical issue. Sam's journey fell off the super star path and instead we found ourselves on the slow and steady path. I often think of Sam's journey like the tortoise and the hare story. I was so hoping for the quickness and ability of that hare but instead I found myself in the role of the tortoise. Another of my favorite stories that I referenced on my blog was the Fern and the Bamboo. Check out and read that blog post for further inspiration. Sam is like the bamboo not quick to grow or sprout but slowly working on a strong root system that will allow him to exceed our expectations.

But the inspiration I want you to take away from this post...is to never give up. It would have been easy for me to throw in the towel after any one of the many diagnosis Sam has received. It would have been easy to give up when Sam couldn't take the Nutrivene supplement or he didn't react well to the Changing Minds Foundation protocol or I didn't see huge changes with the addition of his diet or hearing aid. It would have been easy to give up when Sam didn't excel like some of the other children on NACD's client list. Each of our children is very different and their response to intervention is very different. Sam has taught me time and time again that his course is slow and steady and he and only he will determine the pace. The interventions we have kept are those that we see the slow and steady progress. Would I love jumps in Sam's development, would I love to see Sam not have any more diagnosis/labels added to his extensive list...oh heck yeah. But what I want you to take away from this post...what I want you to think about...is to push on, move forward and never ever give up. I view Sam as a diamond in the rough and we are slowly chipping away at the challenges that keep him from shining or reaching his full potential. And even when I feel I've been given a butter knife instead of a chisel I'm going to just keep chipping away. Good night everyone!

Our Journey With Diet and Supplements

Sam came into the world a whopping 10 lbs., 2 oz. and I originally took that as a sign that he was not going to be like the typical child with Down syndrome because from my reading most were born early and they were small. He was only a day early and that was because I was induced and he looked like a toddler when he was born. It should have been my first clue that Sam was not going to go by the book, Sam's journey was going to be his own and he didn't want me to get comfortable with anything written or pictured in a book. Now looking back, how could I have possibly thought that there was a typical child with Down syndrome?? They are all so very unique.

As I researched Down syndrome and tried to understand our new reality I quickly became side tracked as Sam decided to keep me focused on him. He had feeding issues, he seemed to struggle with breathing while he slept. His feet and hands were often so blue or purple that I would hide them in his pajamas so people wouldn't stare. Wow, it was fun finding these pictures again, but take a look at Sam's hands in our Christmas photo. They are perfectly purple. I have really cute kids...don't I??? Okay...so I'm a little biased.

Sam's first year was a rough one with numerous hospitalizations for illness and respiratory issues. He was on antibiotics so many times I lost count. It seemed so hard to keep Sam healthy and breathing correctly not to mention trying to get food in him. Sam loved to eat, but he had swallowing and breathing issues...those two bodily functions didn't seem to work together for him. We had to thicken any and all thin liquids to keep Sam from aspirating. I was awake more than I slept in that first year as I continually needed to monitor Sam's breathing and re-position him as needed to maintain a good airway. My first year I was overwhelmed by trying to understand if what we were experiencing was a result of Down syndrome or something else. This was my first experience with a medically involved child and I was trying to learn as fast as I could. I often got discouraged when I saw other children with Down syndrome who seemed to eat and breathe fine, who seemed to be progressing and meeting their developmental goals.

Our first big set back occurred on the day Sam was baptized. Sam was 1 month old and he seemed lethargic that day and it was more difficult than most to keep his airway stable. Looking back I now know I should have had a pulse ox and oxygen available in Sam's first year but no one seemed to know the extent of his breathing issues. Sam began to have some severe apnea issues where he would have to be physically startled to take a breath. During these times he would turn a bluish gray color and we rushed him to Children's Hospital. The doctor's seemed to be skeptical because Sam arrived awake and pink in color but they quickly took a look at his heart, considered reflux and did a chest x-ray. Sam was admitted for observation and it was when he fell asleep that the episodes returned but now he was hooked up to a monitor and I could see what was happening. Sam would drift asleep and suddenly all of his stats just dropped off and he did not return unless I physically startled him. I called the nurse in and it happened again and this time everyone came running. We were transferred to the ICU and a tube was put into Sam's nose to send a message to the brain that he needed to use this airway. Sam was originally a mouth breather but after many medical tests we found out that the combination of his tonsils and adnoids taking up 70% of his airway uninfected, his floppy airway and extra esophageal fold put him at a huge risk for apnea. It was at this time that we were given a very bleak picture that because of Sam's severe apnea issues that he most likely had suffered a brain injury from oxygen deprivation and his right side was showing a significant weakness. Here is Sam after he returned home.

We did notice that his right side did not move as much as the left and if he rolled over he often lost track of his right arm or leg and they could end up in strange positions. Sam did not belly crawl until he was 19 months old and he did not walk until he was 3 years old and these events only occurred through a lot of work and with the help of NACD. But even through the set backs it was this face and smile that kept me going.

Although Sam's life was filled with medical appointments and evaluations, Ben and Danielle just kept loving him and they were both very protective of him.

After his ICU experience we now had more cardiac appointments as they monitored Sam's ASD. We were scheduled for a swallow study but interestingly the sleep study didn't come about until he was 10 months old. It also is interesting to me that an apnea monitor and oxygen didn't come home with us. Hindsight is a wonderful thing but not much help when you are going through the experience. The swallow study diagnosed Sam with dysphagia or a late swallow. Sam failed the sleep study in spades. The ENT point blank told me that unless Sam had his tonsils and adenoids removed immediately he would become a pulmonary cripple. At 11 months Sam had his tonsils and adenoids removed and I was pleasantly surprised by how much better he and I could breathe and sleep. I know you are all loving the baby pictures, so here are a few more.

Sam at 3 months, already looking forward to his employment at J&H.

Sam at 4 months old, monkeying around.

Sam at 10 months old. Yep, he has always been adorable.

And his 2 favorite people in the world, brother Ben and Danielle.

We had a huge birthday celebration for Sam. I think I was thrilled that he and I made it through the first year.

The next photograph is one of my absolute favorites of Sam and Danielle together.

So, in all honestly, in Sam's first year I was not overly concerned with diet and supplements because I was focused on swallowing, eating and a little thing called breathing. We began with NACD when Sam was 18 months old and it was the first time I had heard about Nutrivene and Ellen Doman had requested that we remove dairy from Sam's diet. In all honesty...I thought Ellen was way off about dairy...I mean we live in Wisconsin...the dairy state?? But as I was soon to learn, she was usually spot on and I had some learning to do. We removed dairy and Sam's congestion went away. I thought congestion was just part of Sam, I couldn't remember when he wasn't congested. The change to raw goat milk, almond milk and rice milk was one of the easiest changes and because we saw an immediate result it was easy to stick to. I had so much to learn and my next dive was into the world of supplementation. I checked out Nutrivene and loved the testimonials. I thought this may be an answer to my prayers and I ordered the powder. At first Sam would happily take it in his applesauce but that ended after about 2 weeks. The other problem I had was that Sam seemed less focused, more stimmy and I hadn't even gotten up to the full dose yet. His skin looked worse with some added rashes and his temperment changed. I quickly figured out that my experience with Nutrivene was not going to make it in the positive testimonial section. I began to realize that once again Sam's journey was going to challenge me further. I still felt in my gut that Nutrivene was a good supplement and I still recommend it to parents that ask me about supplements.

After talking with a fellow NACD mom we switched Sam to Brain Link and Cod Liver Oil and his body seemed to like it. His focus improved and the stimming reduced down to his typical amount...Sam has never completely given up on stimming. It's a dream I have. When Sam was little his stimming was rocking, playing with images out of the corner of his eyes, getting too close to the TV screen and a little bit of flapping or finger play next to the eyes. The stims have changed over the years and he is always very creative with his stimming. He could start out with good play and turn it into a stim.

It was nice to see that in Sam's 2nd Christmas photo, his color was so much better and his hands were nice and pink.

When Sam went in for his 2nd year cardiac appointment we were disappointed to hear that his ASD had not closed on it's own and he would be scheduled for surgery on his 3rd birthday. I jumped into research mode again and found Willis Langford. Willis was a wealth of information and plunged me into the world of nutrition and supplementation. He was the first to talk with me about Leaky Gut. He answered my gazillion questions and tried to desperately teach me about the body's metabolic systems. It seemed very over whelming to me and I felt like I would need a bio-chemist to assist me. We began to give Sam Mannatech supplements. This was our only addition to his supplements and amazingly when Sam went into his 3 year cardiac appointment his ASD had closed and his surgery was cancelled. My mind began to wrap around the idea of helping Sam's body through supplementation.

I joined the Einstein list and I spent a lot of time reading through the archives. I'm not going to go into lengthy explanation on the metabolic cycles regarding Down syndrome because others have done it so much better than I could. Please see: Basic Cell Biology for Parents of Children with Down syndrome, Down syndrome is a Treatable Condition, and my all time favorite...A Hole in the Bucket. I began to piece together things I had heard from doctors, nutritionists, holistic doctors and other parents. Sam continued to have issues with respiratory illnesses, pneumonia and croup. I tried a lot of different supplements but they didn't seem to address these issues. I got excited when I read about a supplement that helped a child on the listserve but I was quickly discouraged when Sam would have the opposite result or even worse side effects. Sam also had skin reactions, behavior breakdown, temper tantrums and side effects to medications that were not expected. I often felt like I was fighting a losing battle.

NACD began to talk with me about changing Sam's diet. Leaky gut came up again and I jumped into my research mode again. So much of what I read pretty much described Sam. I began to wrap my mind around the fact that Sam's diet needed to be addressed. The nutritional supplements would be lost on a system that couldn't digest and use them. I added supplements to address yeast to our protocol (a probiotic, grapefruit seed extract, garlic & oregano oil) and I began to slowly break down Sam's diet. Something Ellen Doman said to me really helped. She told me about the SCD diet but she told me to think of Sam's diet in the terms of fruit, vegetables and meat...as organic and natural as possible. Shop on the edges of the store and skip everything processed in the middle. I remembered hearing that vegetables that grew close to the ground were the healthiest and should always be organic.

I would love to tell you that I jumped in head first and all our problems were resolved. Instead...I struggled...I listened to those around me that said that having something special or off diet once in a while can't hurt....birthday cake...ice cream...a McDonald's Happy Meal. I mean, shouldn't every child experience a Happy Meal once in their life? I thought that if I watched his diet most of the time...I was doing great. Well, I quickly learned that my lack of commitment to the diet wasn't helping Sam in any way. I was still feeding his yeast issues and with the yeast came lack of focus, increased stimming, temper tantrums, hissy fits, bad bowel movements and his bodies inability to absorb and process nutritional supplements or medication. We were still in a bad place and Sam's immune system was still suffering.

I would often jump back on the diet but I learned that dietary changes do not necessarily show immediate outcomes. If I followed the diet for six weeks the changes were often so gradual that having not done this numerous times I could have missed them. I had to begin to realize that this was not a diet but instead a life change. Sam needed me to jump in head first and keep swimming. If I was going to help him heal his gut and improve his immune system I had to be committed to changing his food choices. I needed to let go of the idea that Sam could eat whatever we ate and I needed to really pay attention to giving Sam's body what it needed. It is now easy for me to tell when Sam's system is off. He recently was hospitalized for double pneumonia and a secondary infection and was on 4 different IV antibiotics before they determined which one was best. Sam had an allergic reaction to one of them and minor reactions to the others but most notable was the change in his behavior. He was hyper, stimmy and the gluten free choices in the hospital had too much rice for his system. We needed to get back home and work with the food choices that I knew his system could handle. Being gluten free was not enough for Sam, his system didn't handle a lot of rice well, corn was out, sugar was out. He couldn't handle enzymes but he needed them. His yeast was resistant and one course of supplements wasn't going to do much.

I had figured out that Sam's system did well with fermented vegetables and we love Little Red Hen and Company products. He eats a scoop of these before each meal and this helps him digest his food better. Sam also has a scoop or two of coconut kefir made by Slow Pokes a local store in Grafton, Wisconsin. The kefir can be mixed into a liquid or Sam and I can both eat the flavored kefir straight. Another wonderful find was a bread that Sam could tolerate. Most gluten free breads are made with rice or tapioca starch which didn't seem to work well in Sam's system. Slow Poke's brings in a bread from Deland Bakery which is a vegetable (zucchini) bread with millet.

I didn't really know what to supplement anymore. I would hear about new protocols and give it a try but Sam would quickly show me that he couldn't handle the supplements. Putting Sam on gingko or body bio oil resulted in increased stimming, lack of focus and inattention the exact opposite of what it was promised to do. We tried the Speak supplement for speech with some great initial results but increased stimming and a drop in speech after being on it for a month. His pulmonologist was hoping for the magic pill for Sam that would keep him from going into respiratory distress but everything we tried Sam reacted poorly to. He would become manic on inhalers or steroids. He would break out in rashes from antibiotics. Sam's bottom has had a rash on it for the last 4 years and every time we tried to treat it we made it worse. I noticed other changes too...Sam's eyes are always dilated, his pupils do not seem to react to light appropriately. So think about trying to read when you have been at the eye doctor and they have dilated your eyes. Hmmm....that could be a problem. We also have the added diagnosis of Perthes which in Sam's case is a late stage and has continued to break down his hip even after corrective surgery. So even with the advances and positive things we have seen with his food choices we still were not giving his body what it needed to function properly.

I wanted someone to test Sam and help me figure out what to supplement. I wanted to know why Sam couldn't take supplements that should help him. I wanted to move forward instead of feeling like we are always falling behind or waiting for the next diagnosis to hit. Although this journey with Sam has taken me to more doctors and specialists than I ever hoped to meet in my life I was willing to try one more. In my research on Perthes or AVN I had read about some patients seeing good results with oxygen chamber therapy. Considering Sam had issues with maintaining a healthy oxygen level this naturally caught my attention. A friend of mine told me about a local doctor that worked with a lot of children with Autism. What interested me was the fact that this doctor did extensive metabolic testing, understood the results, understood metabolic systems and disturbances and I hoped that maybe he could help me with Sam. He also knew and used hyperbaric oxygen therapy treatment with his patients.

I met with Dr. Norman Schwartz and he asked me what my concerns were about Sam. I explained everything I have covered here and showed him each of the supplements I was giving Sam and explained some of the ones I wish I could. He asked me to complete an extensive round of blood tests, urine tests and a stool sample. After we did we set up an appointment to review the test results. I was pleasantly surprised that Sam's pediatrician Dr. Dirk Steinert also wanted to attend this appointment. Although I am no longer a fan of collecting labels or diagnosis for Sam I was happy to see that someone could finally show that Sam did indeed have an autoimmune issue. All of Sam's Ig numbers were low with his IgA and Igm being the lowest. In my research it showed me the possibilities of celiac, respiratory/immune issues...pretty much describing some of Sam's issues. Sam also showed an abnormal thyroid range. Hyper instead of hypo.

The urine test used to complete the Organic Acids Test-Nutritional and Metabolic Profile gave us some more information. Sam has a high yeast or fungal overgrowth (see I told you Ellen is normally spot on). His low HVA levels indicate a lower production of the neurotransmitter dopamine which may be due to a deficiency in magnesium and B6. Low dopamine levels lead to loss of motor control, cravings, poor attention and focus, low drive or energy, cold hands and feet, putting weight on too easily, craving diet soda. Hmmm....pretty much describes Sam. Sam had low VMA levels which can manifest itself with sleep issues and fatigue and are also helped with magnesium and B6. Sam also had a low HIAA level which indicates lower production of serotonin. Low serotonin levels are often attributed to anxiety, panic attacks, obesity, insomnia and fibromyalgia.

One of the areas that kinda startled me was the high level of quinolinic acid in Sam's brain. The range for the Quinolinic test is .48-8.8, Sam's was at 9.1. The range for the Quinolinic/5-HIAA Ratio is less than 2.5 and Sam's level was 12. This high level may be a sign of inflammation or neural excitotoxicity. Quinolinic acid is derived from the amino acid tryptophan and is neurotoxic at high levels. As an excitotoxic stimulant of certain brain cells that hve NMDA-type receptors, high quinolinic acid may cause nerve cell death with continuous stimulation. Brain toxicity due to quinolinic acid has been implicated in Alzheimer's disease, autism, Huntington's disease, stroke, dementia of old age, depression, HIV-associated dementia, and schizophrenia. High levels of quinolinic acid may inhibit heart contractions, cause lipid peroxidation in the brain, and increase apoptosis (programmed cell death) of astrocytes in the human brain. The level of quinolinic acid is also highly correlated with the degree of arthritis impairment. (Yikes, that won't help the Perthes issue)

Treatment of excessive levels can be achieved by multiple approaches: reducing tryptophan supplements, preventing repeated infections and immune over stimulation, reducing the number of vaccines given at one time or increasing interval between vaccinations. (Already doing that) In addition, the drug deprenyl or the dietary supplements carnitine, melatonin, capsaicin, turmeric (curcumin) and garlic may reduce brain damage caused by quinolinic acid. Supplementation with 5-HTP may increase serotonin levels, but 5-HTP is not metabolized to quinolinic acid.

Sam had high ethylmalonic, methylsuccininc, adipic, suberic, or sebacic acids may be due to fatty acid oxidation disorders, carnitine deficiency, fasting, or to increased intake of the medium-chain triglycerides found in coconut oil, MCT oil and some infant formulas. The fatty acid oxidation defects are associated with hypoglycemia, apnea episodes, lethargy, and coma. Regardless of cause, supplementation with L-carnitine or acetyl-L-carnitine (500-100 mg per day) may be beneficial.

Sam's pyridoxic acid (B6) levels were low which may be associated with less than optimum health conditions (low intake, malabsorption, or dysbiosis). Sam's B5 and C level was also low.

In the Doctor's Data urine tests we learned that Sam's calcium was low and needs to be supplemented (Hmmm...could be very important for bone growth, don't you think). Sam's molybdenum was also low which can be linked to an increased allergic reaction to sulfite food additives.

In the Doctor's Data metal toxicity test Sam showed a high level of Barium.

Sam's stool sample show a low predominance of bacteria which is an indication of dysbiosis or the term that originally described Sam, leaky gut.

It felt good to finally put all the pieces together and come up with a plan. So what is Sam's plan???

PH Diet - We will try to daily test his first urination of the morning and check his PH level. Sam has slowly been working his way to the 6.4 - 6.6 range but we will continue to work on getting him to 7.0. Why the need to check his PH. Here are 5 reasons to do so from the Alkaline Diet website. You can also get a simple chart to see alkaline/acid foods.

Improved Energy Levels

Proper cell functioning is very important to a person’s overall energy level. If the cells are not healthy, they are not as effective at holding and transferring oxygen within the body. This can result in overall fatigue and a lack of energy. The body’s pH level can also affect a cell’s ability to produce adenosine triphosphate (ATP), which is important to the body’s energy level. This process normally takes place within a cell’s mitochondria. If the body’s pH level is too acidic, this process does not take place as effectively.

Healthier Teeth and Gums

When the pH level of the body is too acidic, it stands to reason that the mouth will also be quite acidic. Unfortunately, when the level of acid in the mouth is too high, it can cause bacteria to grow at a much faster rate. Bacteria can cause a number of different problems in the mouth, such as gum disease and bad breath. A high level of acid and bacteria in the mouth will also increase a person’s chances for tooth decay. Many people note an improvement in their overall level of oral health after switching to a diet program that promotes an alkaline pH level in the body.

Improved Immune Function

When cells are healthy, they are effectively able to absorb the nutrients they require. Healthy cells are also efficient at eliminating waste products. If cells become weakened in any way, they are not nearly as effective at these kinds of functions. As a result, infectious organisms have a better chance of affecting these cells. When the body’s pH is too acidic, cells cannot function at their optimal level. This is why a person is more likely to become ill, develop infections, or even develop cancer when their diet is acidic as compared to alkaline.

Reduced Pain and Inflammation

Magnesium is one of the minerals the body uses to help control excessive acidity. If you eat a diet that has an acidic effect, the body is forced to use more magnesium to help neutralize it. However, magnesium is also a useful nutrient in the body that helps to support joint and tissue functions. By eating a diet that has an alkaline effect on the body instead of an acidic effect, your body will have more magnesium available to help reduce tissue and joint pain and inflammation.

Slower Aging

When cells are subjected to an acidic environment, they function much less efficiently. This reduction in functionality can impair a cell’s ability to repair itself, thus resulting in premature aging. Premature aging can also occur when cells are not able to get enough oxygen, and when they are not able to rid themselves of toxins. An alkaline diet can help prevent all of these scenarios. Better functioning cells means a younger appearance for you. Plus, as an added benefit, an alkaline diet program will also help you maintain a healthy weight.

All good stuff and what are we doing for supplements:

B12-Sam receives a shot every third day of 12 units (and no he does not like these)

Nutrivene D-Sam is now able to take the full dose of 15 capsules a day divided in two doses.

Curcumin-4,000 mg

B6-275 mg

Vitamin D3-5,000 IU

Vitamin C-1,000 mg

Megasorb CoQ10-100 mg

Probiotic 55 billion-476 mg

Butter Oil Fermented Cod Liver Oil-1500 mg

5-htp-200 mg

Magnesium-440 mg

Zinc-75 mg

Calcium-300 mg

Garlic, Oregano Oil and grapefruit seed extract for yeast

Colostrum-480 mg

That's a total of 43 capsules a day, 5 drops and orange juice enhanced with a liquid calcium supplement along with a shot in the butt every third night. Sam with encouragement will swallow all the capsules with apple sauce to help them slide down.

I keep track of Sam's PH and all his supplements on the Ipad with a app called Ibiomed which allows me to create Sam's profile, list his allergies, supplements, therapies and journal any issues, concerns or improvements.

So what have we seen since we started. Well we slowly ramped up to the full protocol. Dr. Schwartz did warn me that we would see some yeast die out and behavior issues at the beginning but they would mellow with time and they have. In the first week or so Sam was hyper, stimmy, demanding and a wee bit overbearing but we kept on. Just Sam being able to take the full dose of Nutrivene without side effects was an improvement. Sam's eyes are now working correctly, they dilate and shrink to the light in the room. The rash on Sam's bottom is finally going away. Sam is sleeping well. He is pulling out more words and doesn't seem to struggle as much when asked a question. We still have to work on listening but he is easier to work with. He has good focus, he still says "no" when asked anything but he doesn't perseverate on it.

He is losing weight, hallelujah!!! He started at 128 lbs. and is now weighing in at 123. He is walking more and has less behavior due to reduced pain issues. Does he have any bone growth in the hip??? We will check that out at his next x-ray in a couple of weeks.

But overall...we are making progress. He seems happier and more in tune with his world. For his birthday and Christmas Sam received KidKraft sets. One is a fire station, another is a construction site and the third is a garage.

Previously we would have had to show Sam how to play with these or he would have had little to no interest. I like the KidKraft sets because they are well built, encourage imaginative play, work on communication skills and utilize fine motor skills to crank up the elevator, or hook on the wrecking ball. What I wasn't prepared for was Sam's appropriate reaction and play. He had the fireman sliding down the pole, going to bed, climbing the ladder and steps and he even had them talking to each other. To most parents that would seem really normal and what he should be doing but they haven't seem Sam do the same thing like drop the guy from the top floor 32 times in a row. Sam is curious about the sets and what you can all do with them. He watches me and then copies me...please keep in mind we used to have to do hand over hand to make this happen. So many things that other parents take for granted just did not happen with Sam...but now they are.

Sam has an interest in coloring and writing letters and words. Sam always liked the TV Teacher.com DVD's but he didn't transfer what he was learning to other areas. The other day he wrote Sam and Dad with his finger on the carpet. Yes, the S was backward but the effort and initiative is what excited me.

Sam decorated the tree I drew. So right now...it's fun...and exciting...and I hope and pray it continues.

We will recheck Sam's blood work in January and tweak as necessary. I am often asked if all this is necessary?? If Sam was healthy and functioning at a good level...I might not have jumped into as much although I would still want to address the extra chromosome and how it causes "overexpression" of genes that change metabolism and function of antioxidants, amino acids, digestive enzymes and other essential nutrients in his body. But Sam was struggling to stay healthy and out of the hospital, his hip was breaking down, his happiness and behavior showed signs of stress, pain and struggle. There was so much about Sam that I was piecing together but I didn't know how to address it. Through the combination of Dr. Steinert and Dr. Schwartz I think we are making progress.

Now I know a question that will come up is cost. Yep, Sam is a kinda expensive kid...although he is worth it. The extensive blood work was run through our insurance by Dr. Steinert. The urine and stool samples and two appointments with Dr. Schwartz brought us up to $1,204.00. I will submit this to our insurance and whatever they don't pick up I will use our HRA account to reimburse. On average a container of each supplement listed would come to a total cost of around $285.00 - $300.00 which would last a little over a month. So a yearly cost of over $3,000.00 in supplements. Add in Sam's NACD program, his organic grocery costs and the dollars begin to add up quickly. We are fortunate that some of our supplements can be put through our Family Support and Waiver programs. We are fortunate to have good insurance and a HRA account. We are fortunate that I can be home with Sam to do his program and keep him on his healthy plan. We are fortunate for so many reasons and Sam continues to make sure I don't take anything for granted.

I went through the holidays feeling empowered that we were doing something. Only time will tell what we will continue to see. I am encouraged but still tentative because I am used to seeing changes and then have them go away or see new side effects that are not expected or wanted. I want Sam to regain full mobility, I want him to ride his bike and enjoy his life. I want him to be healthy and happy.

My intention of this post is to simply share our journey....the positives, the negatives, the struggles and the gains.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me'.
Erma Bombeck

One Day At A Time...But Can We Skip Today???

Today I took Sam in for a follow up appointment with his surgeon. I dropped Sam off at the entrance with his walker and then proceeded to park the car. I received an interesting look from a couple who watched us. I could only assume what they were thinking but the expression was one of surprise, maybe concern. Did they think I was dropping him off and leaving him there alone? Did they think Sam would freak out when I went to park the car? Please tell me they didn't think he was going to dart off into the road (I would think the walker kinda explained that situation)? Or were they surprised that Sam could do this or were they thinking I was a bad parent because I knew he could? Whatever they thought it again made me go to that place in my mind where I try to deal with other peoples perceptions of my child.

I shake it off and head into the clinic with Sam. Sam sees a man walking out and says "Hello Man!", the man immediately smiles and says "Hello". I smile at Sam watching him enjoy the interaction. As we approach the elevator an older man walks out, Sam says "Hello, Man!" This man avoids looking at Sam and hurries past him. Sam calls to him again but the man doesn't turn around. My heart breaks a little...the elevator door closes and I tell Sam that some people are in a hurry to get through life and forget to reach out to others but I'm happy he does. Sam smiles...he doesn't judge the man that didn't respond as I do, he never holds a grudge.

We check in and they send us in for an x-ray. Since Sam is walking and he hates to lie on the table they decide to take one standing up. They work with him to have him stand up straight with his feet positioned forward which seems a little uncomfortable for Sam but he cooperates and then they ask if it would be okay to lower his pants. Sam sorta drew the line in the sand there. I mean in his world, either your pants are up or they are down. He's not the kind of guy who is going to walk around with the crotch of his pants hanging down by his knees. I guess all my teaching on wearing your clothes properly and not letting other people touch you kinda gets blown out of the water in medical situations. So, I pulled his pants down and said "Sam, it's okay Mom will pull them back up in a minute." Thankfully it only took one try to get a good x-ray.

A good x-ray...meaning a clear image of Sam's hips...but not necessarily an image that you or I would look at and say those are great looking hips. I'm going to request a copy of the x-ray and will share that in a later post.

We were then escorted into a room and the new x-ray was up on the screen along with Sam's previous x-rays. The new view seemed to highlight the difference in the femur position of the left hip but it also showed an even flatter head. After all the research I have done on hip dysplasia and Perthes and all the beautiful diagrams of normal hips I have looked at...even I can see that Sam's hips don't look like any of the pretty pictures. All the hardware still glared bright white on the screen, again causing me to cringe a little bit. Sam's femur on the right side is not angled like the corrected left side, it is straighter and the hip socket is shallow. The left side has a better looking socket and a better angle but you can't help but notice the missing ball top.

I began to come to the realization that this twist in the journey is far from over. I didn't expect to see a beautiful round ball at the top of the femur but I also didn't expect to see further bone loss.

Sam has had a lot of twists in his journey that have brought us into different areas of Children's Hospital...areas I had hoped to never visit. The first area was Cardiology. Sam was born with an ASD or hole in his heart. When he didn't make progress closing the hole on his own he was scheduled for open heart surgery when he turned 3. With the help of a nutritional supplement and the grace of God...Sam's hole closed on it's own shortly before his 3rd birthday allowing us to bypass the surgery. Thank you, Lord.

The next area Sam decided to check out was the feeding/swallow/sleeping clinic. Sam didn't chew, his liquids had to be thickened or he would aspirate into his lungs and his tongue protruded more than normal. During his first swallow study I watched the thin liquid drop into his lungs, I watched him swallow pieces of food whole, I saw a delay in his gag reflex, a delay in his swallowing process and then I watched them put Sam's tongue in his mouth, close his lips and at the same time close his airway. Sam could not put his tongue in his mouth, close his mouth and breathe.

The swallow study moved into a sleep study which showed that Sam had reflux and severe sleep apnea because his tonsils and adenoids uninfected took up 70% of his airway and then there was that tongue. My Mom came with me to the follow up appointment to the swallow study. We were told Sam had dysphagia (a late swallow), all of his liquids needed to be thickened to keep him from aspirating, he would need extensive oral motor work...but that was the good news. The thing they were really worried about was Sam's breathing issue. We were told if this continued and his mid face did not grow out enough they would have to surgically assist. This is when we learned about distraction osteogenesis. I watched my mother grow pale as they described the medical procedure which included peeling the face down, screws, turning pins and numerous procedures. Sometime during the explanation I simply went numb and stared at the little baby in my arms watching him smile.

After this appointment was the follow up to the sleep study. At this appointment Sam's ENT announced that Sam would become a pulmonary cripple if we did not have his tonsils and adenoids removed immediately. Harsh, YES, and again I found myself in the parking structure of Children's Hospital crying my eyes out while Sam slept in his car seat in the back.

Sam had his tonsils and adenoids removed and has since had his adenoids shaved twice. His breathing improved and so did my sleep cycle. He went in for his follow up swallow/sleep study and my Mom and I rejoiced when we saw them put Sam's tongue in his mouth, close his lips and this time the airway remained open. During his sleep study his oxygen stats stayed up and his sleep apnea disappeared. Thank you, Lord!

Due to Sam's respiratory and immune issues we still hang out in Pulmonary, I'm hoping to graduate from that area someday but I'm not holding my breath...pun intended.

We also frequent Audiology, ENT and Speech appears to be a long term commitment.

And now Orthopedic. Today I sat in the appointment as Sam's surgeon again explained the advanced stage Sam's Perthes is in. He explained that the surgery was successful to deal with the primary diagnosis of hip dysplasia but Perthes...Perthes is a nasty disease, Perthes is a rare disease and Perthes is different in every person who gets it. Sam will continue to have good and bad days, he will continue to have pain, his gait is probably forever changed, the Perthes may have now affected his growth plate and cut off the blood supply to the growth plate, the ball may not grow back or grow back enough, he may still end up needing a hip replacement....are you getting the gist of this appointment.

Sam's reaction...he hugged his surgeon and thanked him. Were we in the same appointment?

Or is Sam again trying to teach me that today is still a good day, no matter what happens, no matter who we see, no matter what we hear...the fact that we simply...are....is the important part...the rest is just details.

Continued prayers for Sam's growth plate, bone regrowth, improved gait, less pain and thanking God that Sam is Sam!

Looking For the Easy Button???

This post has been rolling around in my head for quite some time and it's time to just get it out. Wouldn't life be great if we all had an "Easy Button"....or would it?

When Ben began to struggle in school and was diagnosed with Dyslexia and learning disabled in reading, writing and spelling...I would have loved to make all his struggles disappear with just the push of a button.

And don't even get me started on Sam...Down syndrome (push the button), Speech/Feeding Issues (push the button), hearing issues (push the button), respiratory/immune issues (push the button), school/homeschool (push the button), medical emergencies (push the button), diet (push the button), NACD (push the button), and now Perthes??? Let's just get the duct tape or gorilla glue and secure that button into a permanent pushed status.

As a volunteer for our Wisconsin NACD Chapter, as a parent liaison in our school district, and as an active advocate for children with special needs and their families I have had the wonderful opportunity of meeting many wonderful children with special needs and their families. I know in my head that every child is unique and you can not compare one child to another but yet my heart would often compare Sam to other children with and without Down syndrome. My heart would hurt as I listened to a girl with Down syndrome easily and expressively communicate her thoughts and ideas while Sam struggled to get out any words. My heart would hurt when another little boy would be up and walking at 15 months and Sam didn't take his first step until after he was 3 years old. My heart would hurt when other children could easily follow instructions and Sam needed constant repetition and reinforcement. My heart still hurts when Sam is sick or hospitalized while other children are running and playing and having fun. My heart now hurts that Sam will have to go through a major hip surgery and be immobile after we spent the last year finally getting him mobile and liking it.

Where the hell is that EASY BUTTON???

Sure that button would have saved me from a lot of heartache, it would have freed up a ton of my time, it would have given me less gray hair, less stress on my mind and body... but it also would have taken away some other things.

Like the hours of time I got to spend interacting with my boys. I'm not going to sugar coat it and tell you that the hours doing Ben and Sam's NACD program were always joyful and uplifting....that would be a load of crap. But if I'm honest with myself, the time spent working with both of them has strengthened our relationship, has built a bond, has taught us how to treat each other and how to depend on each other. We have yelled, screamed, laughed, cheered and cried together. I cherish the time Ben and I spent researching Dyslexia, the time I spent reading Walt Disney's biography to Jeff and Ben, the time Ben and I spent listening to and enjoying audio books, helping him work with Dragon Naturally Speaking, riding bikes while doing spelling and digging holes while studying history.

Ben's struggles have shaped him into the young man I am proud of today. He still challenges me...but he also makes me laugh. His quirks and differences make me appreciate the unique person he is. I am happy I took the time to work with Ben and figure out how he learns. I smile at his huge vocabulary...knowing he would never be able to spell most of the words he uses but his use of them is his skill. Ben is quick witted, funny, and has a heart of gold under that tough guy exterior. He's going to be an awesome adult.

Oh and I don't want to leave out my life coach. A life coach is a professional that deals with relatively healthy people who want to improve their lives in specific ways, such as changing careers, finding a healthy relationship, taking their business to a new level, losing weight or deepening their self-understanding, for example. They deal with stress management as well as time management, goal setting and other key areas of change to help their clients lead more balanced lives that better reflect clients’ personal values and priorities. It differs from therapy in that the focus is more on the present and future than the past, more on goals and behaviors than emotions and emotional patterns, and there is a more equal balance of power between the coach and client than between the typical therapist and client.

My life coach is Sam. Sam may not be a professional but he has certainly improved my life and deepened my self-understanding. He has created stress and by example has taught me how to deal with stress. My stress over Sam's medical issues and his going into respiratory distress can't even compare to his struggling to take a breath or his work to regain his physical abilities after surgery. Sam is not worried about the problems of tomorrow, he lives in today, he lives in the moment....he doesn't compare himself with others, his life is at his pace. Many people would argue that Sam's life is simple because of his lack of understanding. I would beg to differ...I think Sam's life is simple because he chooses it to be simple and he is leading by example. What would we all be like if we were more like Sam? Sam places little value on material items, he values his family and friends...he values all people. Sam doesn't care if you are a high paid executive or a homeless person, a movie star or a janitor...Sam will speak to you and treat you the same. Sam never forgets to pray, he is amazed by everything around him from the ant on the driveway to the Grand Tetons. Sam expresses himself through actions instead of words. He lives each day fully, smiling and laughing often, but Sam is strong willed, he tells you what he is thinking, he challenges you to change how you work and interact with him. Sam, like Ben can be a force to be reckoned with....but when they feel understood, when they feel appreciated, when they feel that you have listened to them they are compliant and how they think and figure out things will amaze you.

There is no "Easy Button" in my life just as their is no magic twitching of my nose like in the show Bewitched to get my house cleaned. Life is what it is...the difference is how you perceive it.

Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens. Kahlil Gibran