An Overview of NACD and How They Work With Children With Down syndrome

In my blog post I often refer to Sam's home program through NACD, and his evaluator, Ellen Doman. Sam has been on program with NACD since he was 18 months old. I originally found out about NACD as I was researching Down syndrome and brain injury and I came across a letter that Bob Doman (the founder of NACD) had written to parents of Down syndrome children. Bob's letter spoke to me because it was the first time I heard anyone say that a child with Down syndrome has an unlimited potential. I often wondered how the medical professionals I had met when Sam was a baby could give me such bleak predictions of his future when we hadn't even tried to work with Sam. As I researched further I appreciated the fact that their programs were individualized to the child and their family situation. I knew early on that Sam was not just dealing with Down syndrome, he also had a brain injury and other medical issues related to his respiratory/immune system and I was already questioning his hearing. I really needed someone to help me with Sam from head to toe. With the help of this amazing organization Sam exceeded the medical professionals opinions by the time he was 3 years old and at that point my husband and I could finally focus on Sam's unlimited potential. This video is an introduction to NACD and their philosophy on working with children with Down syndrome. If you double click on the video you can watch them full size on your computer.



The next video contains information that was extremely important to us regarding Sam. Bob talks about the common ear, hearing and structural issues with children with Down syndrome. Specifically in Sam's case we were dealing with smaller than normal ear canals which caused a bi-lateral conductive hearing loss, an under-developed jaw and mid-face, tonsils and adenoids that took up 70% of Sam's airway uninfected so that when he did get sick he lost that airway. It is also believed that Sam's tonsils and adenoids along with his floppy airway and extra esophageal folds contributed to his oxygen deprivation which resulted in his brain injury.

I can not stress enough how important the information in this next video is to help your child in the development of speech and language. Bob explains how the brain learns how to process sound but when there are issues the brain receives inconsistent input and does not process sound properly. Sam's hearing issues, fluid from illness, inability to tolerate dairy and jaw issues all played a significant role in Sam's delayed speech. Sam's early speech evaluations all show him as being non-verbal. All the speech therapy in the world is not going to make the desired impact if you do not address the underlying issues first. Changing Sam's diet, advocating for a hearing aid and our continuous focus on watching for fluid in the ear along with implementing a playful and open method of communication with Sam is how we got him talking. As Sam began to hear, comprehend sound and speak, we continued to engage him through balanced interactions, a focus on limiting questions and always adding to his spoken words. If Sam said "like trucks", I would say "like big trucks" or "I like trucks" always giving him further options to expand his language.

In this next video Bob goes over auditory tonal processing, figure ground processing and sequential auditory processing. In laymen's terms auditory tonal processing is the brain's ability to differentiate different sounds or tones, figure ground processing has to do with background noise and the inability to focus on speech when background noise is present, sequential auditory processing is the ability to link pieces of auditory information together, like following instructions and also has a direct correlation with cognitive ability and maturity.

Oh, where do I start with Sam?? In my mind or my world, I think Sam struggles with this area the most. I believe that it is absolutely work...and really hard work...for Sam to listen and process the spoken word. I know both Bob and Ellen have heard me comment or have read in Sam's progress reports that Sam does not actively listen and Sam struggles with both listening and comprehension. Sam appears to have really selective listening, I joke about my husband having these same issues but Jeff's are controllable for the most part. This is why I would love to be able to spend just 1/2 hour in Sam's brain, hearing how he hears, processing how he processes and that would tell me volumes about how to best work with and communicate with him. We are making slow and steady progress. I love that NACD provides tools and programs to work on this area. This will become my main focus once I can get Sam a little more stable medically.

The next video focuses on auditory sequential processing and helping parents get a better understanding of how important this area is to the development of a child. Before Sam received his hearing aid he was forever stuck at a 2-3 in auditory sequential processing. After his hearing aid Sam is making strides to get to a 5 in auditory sequential processing. This would be the area of Sam's program he dreads the most....and understandably because it is the hardest thing for him to do. I have big dreams for a boy that has had to deal with so much medically and I know that to get him there I need to focus on this area. I know first hand the benefits of working on auditory processing. I watched my oldest son Ben bring his auditory processing up to a nine. He started at a 4 when he was 10 years old and in 4th grade. Ben crashed and burned in 4th grade and I had to pull him from school to work one on one with him. When he returned to school at the end of the year his auditory processing was at a 6. The school personnel were sure I had medicated him because his focus and maturity was noticeably improved. Working with Ben on auditory processing and working with Sam are two very different experiences. Sam struggles with processing the spoken word and his ability to respond and stay focused on the task is even worse than Ben's. Now Ben was labeled ADHD, so think about that for a moment and understand the challenge, persistence, patience and wherewithal it takes to do auditory processing with Sam. Yep, it's not one of my favorite parts of our day either but I remind myself daily that Sam will be independent and I need to do this to get him there.



The next video addresses academic function and how to approach teaching a child with Down syndrome. Due to Sam's difficulties with the auditory processing piece this area has and continues to be an interesting part of our journey. As I work on Sam's auditory issues through sequential processing, The Listening Program and TSI Focused Attention I continue to develop the best way to work with Sam on academic material. There are certain items in my homeschool arsenal I would not be without as I teach Sam. They are the Ipad, dry-erase magnetic white boards, magnet letters/numbers and objects, books with large text, TV Teacher.com video series for writing, www.brainpopjr.com, www.watchlearnknow.org, www.netflix.com, Power Point for 1,000 words and fun unit reviews and our field and road trips. As you browse my blog you will find many posts showing how I work with Sam on academic material.

These are the first 5 videos in the series and there are six more I will include in my next post. Along with the series on Down syndrome Bob has also posted a video series on Autism, Education and Where Did My Brilliant Baby Go. NACD has been the answer to my prayers on questions and concerns with Sam. Sam has challenged both NACD and myself to think outside the box, to adapt to his changing medical needs and I have always appreciated having someone who will look at Sam from head to toe with me and be there as a sounding board to answer my questions and concerns. My journey with Sam has not been an easy one and without the support of Ellen and NACD I often wonder where we would be today. I am thankful for Bob, for Ellen, for the NACD staff and for their commitment to helping every child reach their full potential.

We are coming up to our next evaluation and if Sam continues to have hip pain we will do a phone consult instead of a face to face. I get nervous about Sam's evaluations and yet I feel comfort in discussing Sam openly with someone who always seems to understand and I appreciate Ellen's gentle nudge, sometimes a really great push to keep us focused, to keep us striving and to continue to move us forward.

My Momma Said There'd Be Days Like This!

It might be more appropriate to say "Weeks like this". Winter in Wisconsin can be a beautiful time...

...but it is also a time of sickness, viruses, sinus issues and let's add in hip pain. It appears that our changing weather fronts are causing havoc with Sam's hip. We were in an upswing with more mobility, no traction and improved stability when walking. I quickly thought Sam's new supplements were finally heading us down the right track and they still may be but Sam's hip is still causing him issues. In the last couple of weeks Sam is doing more crawling, less walking, more time spent in the recliner, his frustration level is up and he is whining. Here is Sam today putting himself in traction for the 2nd time today.

Now add two teenagers with sinus, colds and unknown viruses and we have a recipe for disaster. I am also prone to sinus and migraine issues in the winter so we all get to commiserate together. One big happy, err...whining family of pain and general unhappiness. Oh joy! Ben is going in to the doctor today for a possible ear/sinus infection. Danielle will be starting rehab for her knee injury from volleyball (great more therapy sessions in a week). I continue to rub Sam in with oils, diffuse them into the air and struggle to get him focused on learning something...anything...even just a daily life skill or two.

Our current focus has been on something near and dear to Sam's heart....eating! My goal is to get Sam making meals for himself. It seemed like such an obvious and simple goal. We all eat, we require food and eating is one of Sam's favorite things to do. Yep...it seemed easy...until I tried teaching him how to make breakfast. Sam struggles with auditory processing...let me explain that in laymen terms. Sam hears but does not listen and comprehend well, he often tunes people out when they talk because it is too difficult to follow. I kinda picture Sam's processing like the old Charlie Brown movies where the teacher would talk and all we would hear is "Wah wah wah wah wah". Sam tends to pick up on the first and the last word or two of a sentence. When people ask Sam "How are you?" he will often say "11 years old" thinking they asked "How old are you?" If they have that confused look he will then quickly say "I'm good" and smile. Sam struggles to follow auditory directions. Sam has both a hearing and processing issue so something we take for granted, understanding the spoken word...eludes him. Now that doesn't mean that Sam can't follow directions or understand concepts it just means it's a ton of work for him to hear, listen and comprehend and it is imperative to work with him in a way that works and makes sense to him. It's equally imperative to be patient with him, give him time, allow him to express himself and work with him in order to hold a conversation. One of my favorite things about Sam is when we are working through a conversation and I'm answering appropriately which means I've understood and interpreted what Sam has said...the look on his face and how his eyes light up is priceless. Now did you read that last line? That thought process is what keeps me talking and communicating with Sam each day. It is work to converse with Sam. You have to be patient, interested, listen at a level that most people will never develop. You have to be present, in the moment, committed and you have to enjoy the experience. It is a lot to ask of a person...but isn't that what we are asking of Sam and even more??? We are asking him to work through his hearing issues, pick up what he can, process it and figure out the missing pieces, pull out an appropriate answer, manipulate an articulation system that has some broken pieces and respond. Ask an adult who has suffered a stroke how frustrating it is to communicate. That frustration can often lead to depression or anger but the part that amazes me about Sam is no matter how frustrating the process he continues to work with me. Teaching Sam to make a breakfast is a challenging and patience building experience. Let me share the journey with you.

Sam's breakfast usually consists of 2 eggs made in coconut oil, 2 slices of gluten free bread with ghee butter and organic cinnamon and a glass of apple cider or fresh squeezed orange juice. The first part of working with Sam is to show him the expectation so I demonstrate making the breakfast. I show him where each of the items is stored and I walk through making the breakfast. For most neurotypical kids this step would be enough to complete the task. Not so for Sam. We began with locating and getting the items he needed for his breakfast. I first tried to walk him through step by step auditorally which failed epically within the first couple of instructions. He got frustrated, sat on the floor and refused to even acknowledge that my lips were moving. Okay...regroup...I'll write out the instructions because Sam's reading is stronger than his ability to follow auditory instructions. So I wrote out the instructions and Sam struggled with processing the whole sentence and finding where he left off so he kept trying to start from the beginning each time. Frustration x 2 = Mom and Sam looking at each other hopelessly. Okay...regroup...what if I do a visual guide. Walah...a visual guide to help direct Sam on what he needs for breakfast.

I showed Sam how to use the guide and he really enjoyed watching me but when it came his time to follow the guide...not so much enjoyment. He got a plate and called it a day.

Whew time to rethink. I know Sam wants to eat, I know he can follow a visual guide...yep...I'm pretty sure this is behavior. Time to switch over to my behavior analyst hat. This does require walking around the kitchen and the hip is a wee bit painful lately so we will place a chair centrally located in the kitchen for a rest stop. Sam was happy to just sit on the chair and say "NO" when asked to get out his breakfast items. Grrrrr...I know you can do this Sam. It's time to pull out the big guns. I say "Sam, you do or no breakfast." Said with an authoritative"I mean business" tone. Sam understanding his lack of doing means no food is starting to get his attention but he is still whining and refusing to proceed.

Sometimes with Sam, the best thing is to walk away and let him think about it. I again using my best "I mean business" tone say "Sam, you do or no breakfast." "I'm taking my shower" "Sam do it". I walk away feeling somewhat deflated, teaching when it doesn't work is very deflating to the ego. I'm not asking him to prepare a gourmet breakfast for the two of us and have it on China by the time I finish my shower. I just want him to pull out the supplies needed to make breakfast. As I took my shower I tried to keep positive thoughts that he was doing it but if I'm being honest I kinda figured I'd be regrouping again.

I finished my shower, got dressed and headed to the kitchen. I was happily surprised to see Sam sitting in a kitchen chair with a smile on his face. This is what greeted me on the guide.

Okay, not perfect, but it was an attempt and I rewarded him with a high 5. We then looked at the guide and I was able to quickly walk him through the corrections that needed to be made. I gave him the benefit of the doubt on the bread because his bread only had two pieces left and it was under the bread he pulled out. The pan he chose was conveniently sitting on the counter so he didn't stress himself in getting the right pan out of the cabinet. The salad dressing I believe was Sam's attempt at humor because he couldn't wait until I asked him about that item. He smiled and even laughed a little when I asked if we use salad dressing for breakfast. He quickly told me "cinnamon" and got it out. The items missed were quickly found and placed on the guide. He did it and the look of pride on his face was hard to miss. The next day it was easier and each day it has gotten easier except when the hip is hurting too much.

The next step is to show him how to make breakfast. To most of us it's pretty simple, but take a moment and break the steps down to single instructions?? Yep, are you feeling more challenge and fun is about to befall us. My first instruction was regarding the toaster. Sam was happy to get the toaster out and plug it in. I was encouraged, even feeling a little confident that this was going to be the easy part.

And then it happened.

I asked him to get two pieces of bread and put them in the toaster. A simple instruction unless you struggle with fine motor skills and those two little pieces of bread are being held hostage by of all things, a twist tie. The twist tie is a seemingly harmless invention created in 1939 by T&T Industries unless you are Sam Mayer and it is the obstacle that stands between you and those two pieces of yummy bread. The twist tie was the end of the cooperation. I tried to show Sam how to untwist the tie but he wanted nothing to do with it. My mind began to figure out a compromise. I could put his bread in a ziplock bag...but then...I pictured Sam as an adult at the grocery store unable to buy anything that had a dreaded twist tie. Damn you, twist tie! You won't win this battle. To work on the twist tie I would bag some of Sam's favorite snacks and have him master the twist tie. But Sam is no dumb bunny...he simply ripped the plastic and left the twist tie intact. Hmmm...I found some wire ribbon, kind of like a big twist tie and I wrapped it around his Ipad. He tried to pull it off but I made sure it was pressing into the rubber cover and then I saw the thought process occur. He was replaying my instructions, "Gwab tie and twit". In my mind I'm pleading with the powers to be to have him "twit" in the right direction. And it happened, he got it and again the look of pride and "I can do it" knowledge was upon him.

The next morning he grabbed that bread with gusto and with the words "Gwab tie and twit" it was opened, the bread was in the toaster and he pressed the button down without me saying a word. I was so proud of him. Another seemingly simple instruction accomplished. Our next step will be to remove the hot toast and butter it. And he'll do it. The bread may be in pieces the first couple of times but with patience, persistence and practice that skill will be learned too. I'm still trying to wrap my mind around cracking the egg, putting it into the pan, turning on the burner and flipping the egg with the spatula. Yikes!! What I want to demonstrate is the technique of breaking it down into doable steps and what I want to convey is the courage and encouragement to take those steps. Is it work?? Yeah...but someday when I come over to have breakfast with Sam that he prepared for us at his house...I will smile!!! At any point I could choose to give up, to take the simple way out and just continue to make Sam his breakfast. But Sam is teaching me to appreciate the small steps, to realize and problem solve the things that could defeat us and to keep moving forward.

Finding Answers!!!

Many of you have noticed that my blog posting has dropped off...I've been kinda quiet. It isn't from lack of events or not enough happening to post about. We all know Sam would never allow me to get bored. It was something different.

Did you ever have someone ask you a question or make a statement...and for some reason that question stuck in your head and you couldn't let go of it? You find yourself thinking about what they said and you wonder why you keep thinking about it. I always consider those messages heaven sent. Someone is trying to tell me something or something struck a nerve and it is an area I need to work on or need to focus some attention on.

Every morning I pray that God would be with me and guide me. Well, let's just say there's been a lot of guidance occurring lately. It all started a few weeks back when we found out that Sam's hip had not shown any regrowth and we repeated Sam's bloodwork. The results we got back from the bloodwork was encouraging. Here in an excerpt from my letter to Sam's doctors.

The major changes in the bloodwork to note are:

Test	Sam’s level 11/1/11	Range	Sam’s level 1/13/12	Notes
IgG	685	508-1080	739
IgA	44	52-232	48
IgM	18	36-226	34
Ionized Calcium	1.13	4.5-5.3	4.80
Magnesium		1.8-3.0	2.1
Vitamin D3	32	30-100	58	Original level 18

The changes we have noted are as follows:

Sam is healthy, no illness since his hospitalization for double pneumonia even though his brother and sister have both been sick.

Sam’s eyes are no longer constantly dilated. Both eyes are working properly.

Sam’s posterior rash is showing marked improvement.

Sam’s bowel movements have increased to 3 times per day, formed and light in color.

Sam is able to tolerate a full dose of Nutrivene without any adverse affects.

Sam’s recovery from his course of intravenous antibiotics which would normally be around 6 months to get his system back on track which includes reduction in yeast and excessive stimming is already on track.

Sam no longer is constantly seeking food and has lost 6 lbs.

Sam is able to pull out more words, not just scripted speech.

Sam still struggles with listening, processing and responding unless physically cued.

Sam has shown better intuitive play skills.

Stimming had picked up in the beginning (including vision play, repetitive actions (tapping, arranging, OCD behavior), constant “Mom” request, excessive self talk or playing movie/cartoon episodes out), and has now reduced to a lower level but he still has a great deal of verbal stims. Basically now if Sam is bored he will stim.

Sam is showing better ROM in his left hip. He is now sitting Indian style in his wheelchair, can rotate his hip to go further underwater and is more cooperative in pool therapy depending upon the day and his mood.

Sam is still asking for the wheelchair for distances further than his mobility within the home. He is no longer putting himself in traction but still needs to change position on a regular basis. Sitting for longer periods such as a trip to the Zoo will cause him to lay down more often when we return. I have seen an increase in crawling sometimes from one room to another and he still shows marked discomfort in a standing position.

I would love to say Sam is easier to work with, but Sam is Sam and he has a strong personality (must be a family trait), overall I think he feels better and his frustration level and tolerance of chores, home program and therapy has improved.

Sam continues to have speech therapy (2x per week), aqua therapy (2x per week), NACD (www.nacd.org) home program, respite care out in the community 3x per week and he will now participate in Special Olympics in swimming.

Along with this update I had sent Sam's x-rays and MRI to Dr. Dror Paley, a renowned Perthes specialist located in Miami Florida. Even though the medical records and x-rays got delayed and no one seemed to be sure if they were sent out or not...I didn't get anxious, frustrated or worried. I was calm...not something that happens often with my A type personality. Prior to the bloodtests I was ready to pack my bags and head to Miami for what I thought would be more surgery...but the bloodtests gave me hope. I wasn't disappointed or surprised when I received Dr. Paley's response:

Since the hip is well contained and well covered and since Shenton's line is reduced, the decision making at this point is based on only two factors; hip range of motion and Shenton's line. If the range of motion is good and Shenton's line remains unbroken, then no further treatment is required for now. If the hip range of motion deteriorates or if Shenton's line becomes broken indicating collapse I would use distraction.

We are okay. Now being the A type personality that I am that doesn't mean I didn't have a few further questions about bone regrowth and how long to wait nor did I stop my continuing research on hyperbaric oxygen treatment for AVN...but we are okay for now. We can relax.

I turned my focus on just enjoying Sam. I invited his cousin Eli for a weekend stay so they could spend some time together and go to the monster truck rally. They had some great air hockey matches and I loved listening to the two of them talking together. Eli said he could understand most of what Sam said and to me that in itself was a blessing and showed how far we have come. I smiled as I listened to the two of them talk at night before going to sleep. Sam calling out to "EI" and Eli always responding "Yes, Sam". In order to make it equally as fun for Eli and to accommodate Sam's schedule we also had Eli go plowing and to work with Ben.

Eli, Ben, Sam, Jeff and I all enjoyed the monster truck rally. Sister Danielle was off on a girl's weekend filled with skiing and snowmobiling in Michigan. This was a first time experience for Sam and yes...I wondered how he was going to deal with the noise.

When it was about to begin I put a head set on Sam. He immediately handed it back to me. But then the first truck started it's engine and Sam quickly turned to me and said "Mom, too loud!" I put the head set back on, he tapped it a couple of times and decided it was a good idea. No meltdown, no issue...he just removed them during the down time and asked that I put them back on whenever it got loud.

HE LOVED THE MONSTER TRUCK RALLY!!

All 3 boys wanted to stay afterwards to watch the clean up. Yep, those are my boys.

Our snowfall has been pretty non-existent this year but when it did snow Sam wanted to go outside and play. Putting snowpants, boots, mittens and a hat on sensory boy has never been something to look forward to. Add in Perthes and everything just becomes a little harder, inability to stand for any length of time which means putting on snow pants and boots is a challenge...then let's try to walk with a leg length difference, already unstable balance on crunchy uneven snow. Doesn't that sound like fun?? But this smile...

...and seeing Sam sit cross legged on a sled is definitely worth it.

I love watching the interaction between him and Buddy.

This big beautiful dog is Sam's protector and friend.

Sam and I laughed as Buddy's split personality came out. Here he thinks he's a retriever.

And here, he's playful as a poodle.

Sam did great on our walk through the woods...of course him sitting on the sled and me pulling. No need to go to the gym, I can just hang out with Sam. Between pulling him on a sled or pushing him in his wheelchair and wrestling his wheelchair in and out of my trunk I feel I have completed my workout. Whew!!

Sam often rubs his left leg when we are outside. The only thing I can think of is that his hardware reacts to the cold. As he made his way out of the snow with my help his hip needed a rest before he could venture into the house. So he laid down on the driveway for a few minutes.

It's kinda sad that something so simple like playing in the snow can cause such pain and discomfort.

In an effort to break away from the research and medical issues I even took a day to enjoy one of Danielle's volleyball tournaments.

I love watching her volleyball games and I think she is becoming a very strong player. I am proud of her making the club team and I hope to attend all of her games.

We celebrated Ben's 17th birthday. Time is just going by too fast. I still remember the little boy working on his John Deere toy tractor on the driveway...now he's working on his diesel truck or one of his many other toys.

Everything was going pretty well. I was often times too tired to stay up and write on the blog. Sam's nutritional requirements, diet, therapies, home program and medical appointments seemed to fill my day and I tried to get everything else done in between. And then came the comment that would change my thought process.

Sam and I had gone to the YMCA for his aqua therapy. As usual I sat in the chairs next to the pool with his wheelchair and watched him and his therapist Wendy in the pool. A group of adults from our community rehabilitation center for people with developmental disabilities had just left the pool area. I often watch these people wondering what they were like when they were Sam's age which of course leads me to thinking about what Sam will be like at their age and then I stop myself and remind myself to just take it one day at a time. As I was sitting watching Sam a man and lady came up to the edge of the pool, the lady asked "Are you a caretaker?" Thinking she thought I was a respite worker I quickly answered, "No, I'm Sam's mom". She raised her eyebrows and then smiled and said, "I'm a caretaker for him, my husband." Her husband smiled and waved and then they both walked away. It was one of those moments that you sat and wondered if you had answered correctly. As a mom of a special needs child we are put into many different roles: mom, nurse, therapist, teacher, friend, bodyguard...and caretaker. I wasn't sure if I was struck by the thought of wondering when you go from being a wife or mom...to just a caretaker. Not that being a caretaker isn't an important job but if we were to look at the hierarchy...I think it would rank below wife or mom. I wasn't judging this woman's response because I have long learned that I can not judge anyone unless I walk in their shoes. But something about that encounter kept bothering me. I absolutely understand the role of the caretaker. When Sam was in his body brace he required my full assistance 24/7 and I was happy to do it. I have often heard parents of children with significant medical needs refer to themselves as caretakers. As much as I tried to reason it out or let it go...it just kept coming back to me.

Then the other day Sam and I had a rough start. I wasn't sure if he had slept poorly, if his hip hurt, if he didn't feel good. Add to that the fact that my shoulder and back was sore and I woke up feeling tired not just physically, but mentally. Put the two of us together and we were a force to be reckoned with. I decided to opt out of program and head to the grocery store. As I began to wheel Sam in I began to dread the usual grocery store experience. Sam is a "meet and greet" kind of guy and will say "Hello" to everyone he sees. At this particular store he usually receives maybe 10 to 20% of positive replies. A lot of people ignore his "Hello", act like they didn't hear him (and we all know Sam has never been really quiet) or shuffle off in another direction. I felt the cloud that was following me...creeping in further. We came to the produce area and our first victim...no scratch that....disappointment...no too negative...we'll just say person came into view. Sam immediately smiled and yelled "Hello Lady". She smiled back and said "Hello, what's your name?" Sam answered, "I Sam". The lady replied "It's so nice to meet you". Sam said "Bye lady, later." She chuckled, said "Later Sam" and walked away. I wheeled Sam over to the deli and out of the blue another lady walked up and started up a conversation with Sam. I couldn't help but smile. This lady thanked me for allowing her to converse with Sam. I wanted to pinch myself...maybe I was dreaming. This continued on in every aisle. It was as if someone announced we were coming and everyone was told to be on their best behavior. By the time I got to the last aisle, I was chuckling and thinking "Wow God, you're good". In the last aisle we came across an older man we often see at the store and he never acknowledges Sam. But today he said "Hi young man" and I almost fell over. Sam was in his glory and I was again humbled.

When we got out to the car, I thanked God for giving me a much needed boost and I prayed that he continue to guide me. I also asked him to explain why I was so struck by the caregiver comment and can't seem to let go of it.

When I woke up this morning and began to go through my day with Sam...I got it. Sam and I have been working on chores and daily living skills with what I thought was a mild enthusiasm from Sam. Due to Sam's auditory processing issues I have been using visual guides to assist him. Sam didn't seem interested and protested at every chance he could. I had begun to give up, to do the chore myself or to move on to something else...but this morning I decided to see who was the stronger one. I brought out Sam's visual aid to help him collect everything needed for breakfast. This requires him to pull things out of cabinets, the refrigerator, use his step stool and place the items on the counter top. He began to protest. I stood my ground and decided to reinforce the concept. I pointed to the guide and said "Sam do or no breakfast". He got out a plate and put in on the guide and then decided to grab a bag of chips instead. I met him in the living room and grabbed the chips, returned him to the kitchen and repeated "Sam do or no food". I left and went to take my shower. I fully expected that when I came back he would be sitting in the front room watching TV having made no progress toward breakfast and I would have to walk him through it again. But much to my surprise he was sitting in the kitchen and there were items on the guide. Now it wasn't perfect but it was an excellent try. You could see the pride on his face. He had done something that mattered. We made the necessary corrections and I rewarded him by making breakfast. As I was making breakfast a few things struck me. Sam didn't make a good attempt until I left the room, I think he is used to me giving in or getting tired of waiting. My expectations are too low, he can definitely do more than what he is showing me. That's when I got the answer to my question. I am obviously a good caretaker but I don't want to be one. I want Sam to be independent but my actions have not reflected my feelings. When Sam had his surgery I became the caretaker 100% and I had too. But that setback did more than just slow down Sam's progress it made me change my thinking and alter my overall journey. Believe me, Sam is more than happy having me be the caretaker and easing the burden of teaching and helping him to become more independent. Wouldn't any of us like to have someone wait on us hand and foot...but then I see the look of pride in Sam's face when he accomplishes something on his own and I have to continue to move forward, to caregive less and challenge more. It's a difficult line with a child that now has a physical challenge along with his normal day to day challenges. I know this is the message Ellen Doman was trying to get through to me with our latest NACD program.

Jeff and I have talked about building a new home. I have asked him to consider building the one level handicap accessible ranch home we would like but also building a second smaller home for Sam. Someplace he could call his own and be completely independent and responsible for. The lot we have purchased would accommodate two homes and give Sam some space and privacy to work on his skills and abilities while allowing us to monitor his progress. I have learned that Sam often does better when he realizes that what he is doing is important and must be done and Mom is not there to do it for him. Kinda like the mantra that constantly runs through my head when I am cleaning our house "It's gotta be done and if I don't do it no one else will." The fact that I have that mantra is probably another message but I need to picture Sam saying and doing the things he needs to do to be independent. If I set that as the goal I quickly realize we have a lot of work ahead of us. Oh, who am I kidding if I have that mantra there is work to be done with all three of my children. We are starting with chores and will expand to breaking down Sam's day so that he can accomplish more on his own. Letting go and letting him do more. It's scarier than having Ben or Danielle do more, alot more worries and unknowns, but it is necessary. Sam may decide he never wants to live fully on his own and that's okay too. The skills he is learning will make him an integral part of the family he is with.

Let me share what it looks like to shadow Sam and the struggles both he and I face. Yesterday I began with the trip to the YMCA for aqua therapy something Sam does twice a week. I told Sam we were going to the pool and he needed to get ready. He looked at me and didn't move because normally I would put everything together and he would just have to walk out to the car. So I had to stop myself and think what would Sam have to do to go to the YMCA by himself. I told him he needed his YMCA bag. He found it and dropped it at my feet. Do you see the trend I've instilled now??? I asked him "What do you need for the Y?" He told me "swimsuit, towel". I said "Well, you better go get them". He did and I was thrilled to see him put them in the bag and zipper it up. He said "Okay, Mom go". I said "Hmmm, we'll need to get a locker". I was thrilled when he opened the side zipper and said "Okay, card". He watched me get my shoes and jacket and followed suit without any prompting. This is better! As we walked out to the garage he looked at his wheelchair and said "Mom, stop, wheelchair". I played dumb and said "Yep, that's a wheelchair". Sam said, "Mom, stop, wheelchair trunk". I told him "You're right, we'll need to put the wheelchair in the trunk". Sam gets into the car on his own and puts on his seatbelt and of course reminds me to put mine on too. We drove to the YMCA and Sam told me to get the wheel chair. This I have to do so I jump out of the car. Sam always locks his door and waits for me to say "Open please". He smiles and opens the door. I wheel him in since he does not have the strength yet to wheel himself but we work on a small section of self propelled wheeling and then have Sam press the handicap door openers. He presented them with his card with a wonderful "Hello Lady" and even answered when they asked "How are you today?" and got his key. We headed to the family locker room and Sam began taking off his clothes and then waited for me to get out his swimsuit. I went to the bathroom and took time washing my hands so he decided to unzip his bag and get things out himself. He put on his swimsuit and placed the towel on his chair. His clothes remained on the changing platform. I pointed to them with a questioning look and he said "Put in bag". I said "You should do that" and he did. I had to tell him to zipper the bag and then he hopped into his wheelchair. I pointed to the key and he grabbed it. We went out to the lockerroom and more tests for both Mom and Sam appeared. Sam had the key but didn't look to see what number he had and proceeded to try to put the key in the nearest locker which of course caused instant frustration. Yep it would have been easy to grab the key and put it in the right one but than I'm not shadowing him in a way that he will learn what to do in that situation. I told him to stop and look at the key. He of course looked at the back of the key and when I turned it over he said "5" even though the number was "15". I had him try locker 5 which didn't work and told him to look at the number again. After whining he got to the number 15 but still proceeded to locker 13 because that was the closest. I said "Sam, look for locker 15". Yep the frustration was beginning to show for both of us. He finally realized that locker 15 was next to 13 and attempted to put the key in upside down. Deep breath and space as I watched him talk himself through turning the key around and trying again. Finally the locker opened and he put his bag inside. He jumped back in his wheelchair and I waited and finally pointed to the locker. He said "oh yeah close, get key". He handed me the key but what I couldn't help but notice is the look of satisfaction on his face. We repeated everything when we left the pool and I was pleasantly surprised when Sam wanted to help me load the wheelchair and bag in the trunk instead of just jumping in and waiting for me.

Is it time consuming? Yes. Does it test my patience? Yes. Does it require me to continually think about what we are doing? Yes. Does Sam becoming more independent encourage me and scare the crap out of me at the same time, YES! But is it all worth it when I see that look of satisfaction, of a job well done on Sam's face? YES, YES, YES!!

A typical parent can worry about independence but a parent of a special needs child has so many more unknowns. The locker situation would not have frustrated the typical 11 year old, they would have figured it out on their own. Our next step would be to have Sam go in the room by himself, then to go into the locker room by himself and finally have him go to the men's locker room by himself. Doesn't seem really scary to the average parent of a teenager, but in order to make a proper comparison you have to think about doing the same thing with your 3-5 year old child. Letting them go into a room or men's locker room unattended, unsupervised. Now what thoughts come to your mind? Do you feel the anxiety? Do you begin to understand why this process is so difficult for us as parents?

My new mantra "Expect more, do less, patience and persistence will prevail." Add in Sam's mantra "We did it" and how can we go wrong?? It is never too early to start shadowing and thinking about how to teach those things that most of us take for granted. Each day Sam will challenge me to walk a tightrope I often feel has no safety net. How much can I challenge and expect him to do but keep in mind his health and medical issues. How do I help him reach his full potential and yet keep him safe or am I really working on both of those issues at the same time??? Today I pray for courage!! Courage is defined as that quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.

Any intelligent fool can make things bigger and more complex... It takes a touch of genius - and a lot of courage to move in the opposite direction.
Albert Einstein

You cannot build character and courage by taking away a man's initiative and independence.
Abraham Lincoln

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
Winston Churchill

Sighing...But Surviving!

I've been putting off this post. I was so touched by all the wonderful prayers and reassuring messages I've received in the last couple of weeks and they allowed me to feel so positive going into Sam's doctor appointment on Friday. But on the ride in, the radio announcer brought to my attention that it was Friday the 13th.

It's funny how something so insignificant can throw you off balance. I thought about it and then shook it off but that little shred of doubt/worry seemed to take root. I began to get nervous. Sam was his usual bundle of joy talking to everyone he saw, smiling and of course calling for Mom at least 100 times in the waiting room. I never feel ignored or neglected around Sam.

They called us in for the x-ray. Sam began to complain...okay it was more like staging a battle but we finally worked through it, got him on the table and got an x-ray. I prayed a little more as we went back to the waiting room.

They finally called us in for our appointment. Sam's x-ray was up on the screen and although I'm not a doctor or radiologist I desperately scanned the x-ray for white fluffy stuff which would signify new bone growth...but there didn't seem to be any. My mind began to reason that I'm not really sure what I'm looking for...I'm not a doctor...and yet my eyes continued to go back to the x-ray searching for some type of change, something that looked different. For the next half hour I went from talking to Sam to searching the x-ray.

The resident came in to ask the standard questions and to check Sam's range of motion and his gait. I felt a tinge of hope when I found out his name was Ben...could this be a sign God??? The resident having the same name as Sam's brother. I was grasping at straws.

Sam's range of motion had improved...that was great news. His walk/gait is still compensating for the lack of bone in the hip...that remained about the same. I finally could not stand it any longer I simply asked "Is there any new bone growth indicated on the x-ray?" Dr. Ben searched and compared and searched and compared and said "No, that doesn't seem to have changed." He said it so matter of factly, like he was replying to my inquiry on if the weather still predicted more snow. My shoulders dropped, my expression was as lifeless as the long sigh that escaped me. No bone growth...it has been over a year and we still have no new bone growth.

Dr. Thometz came in and seconded Ben's opinion but his expression resembled mine. He, like I, wanted to see that white fluffy stuff...but then his expression became even more pained as he explained that he could still see the subcondral ridge which is the first thing that starts to become less apparent as the healing process begins.

I took a deep breath, gathered my strength and asked, "So what do we do?" He again reviewed with me that his colleagues had not come up with any suggestions at the conference that Sam's case study was presented at. He assured me that Sam's surgery was very successful in containing the femur and he was happy about that but he pointed out that Sam's healing rate is slow. He would want to continue to wait and see. My mind is thinking...wait and see??...Sam is 11 years old and we are running out of time.

I asked, so if we wait and see and in a year or two Sam still doesn't have adequate bone growth what happens then. He said we would be looking at a total hip replacement and with Sam's low tone and lax joints that would come with it's own set of problems. The Friday the 13th doubt and worry had just blossomed into a nuclear bomb.

I asked if we are in agreement that the best possible scenario for Sam would be to try to save the existing hip. He agreed. I asked if he would be willing to confer with Dr. Dror Paley and go over Sam's case with him. He sighed and said "Yes, I would do that for Sam." I went on to explain, while trying to keep my composure, that I want to do everything possible for Sam to give him the best chance at mobility and pain free mobility. He's my child and I have never been the type of parent to agree that another deficit would be okay because Sam already has other issues. I want him to hear the best he can, see the best he can, breathe the best he can, feel the best he can, speak the best he can, learn the best he can....and walk the best he can. I have had to focus on aspects of Sam's health and life that most parents will never have to think twice about.

I look over at Sam, he turns and smiles and says "Hi Mommy" "Go home?" I say "Yeah Buddy, it's time to go home". He thanks Dr. Thometz, jumps in his wheelchair and continues to smile and say "Hi Lady" or "Hi Man" to everyone we pass. I pray for continued strength and the positive outlook that Sam naturally exudes.

We head to Children's Hospital for the dreaded blood draw. When they call Sam's name he happily sits in his wheelchair as I wheel him into the room. He even gets out of his chair to sit in the blood draw chair but the happiness ends when he sees the blue bands and he realizes a needle is soon to follow. As usual reinforcements are called in and they work their hardest to try to comfort Sam but Sam is beyond comforting. I begin to pray and say out loud let's just make this as quick and accurate as possible. I wish I could say that the screaming no longer bothers me...that I have learned to shut it out but I would be lying. It kills me every time my child screams like that and I will never get used to it. When they finish Sam immediately stops screaming and crying, he smiles, thanks them and says "Okay Mommy, go home?" "All done".

I load him into the wheelchair and as he happily meets and greets everyone we pass I try to put myself back together piece by piece. I load him and his wheelchair into the car and I put my head on the steering wheel and again pray for strength, courage and a whole lot of stamina. I start the car as Sam begins to sing with the song on the radio "It's 5:00 o'clock somewhere"...and I couldn't agree more. As I listen to Sam's sweet little voice trying to articulate the song I grab on to the life raft he's offering and begin to sing along.

This next week will be filled with getting Sam's records, x-rays and CT scan to Dr. Paley and setting up a conference between Dr. Paley and Dr. Thometz. I will then wait for Dr. Paley's recommendations, pray on them, discuss them with my family and make some more very difficult decisions. And I know that when ever I begin to feel overwhelmed a certain little boy will come and give me a hug or tell me he loves me or put his shirt over his face to make me laugh and I will carry on.

Looking For Some Extra....!!

I received so many wonderful email responses from my last post. I want to thank everyone for reading, for listening and for your encouragement. I have the best friends and followers.

In the last month I have been mainly concentrating on Sam's diet, supplements and getting him back into his home program. I cleaned up my house like a maniac because of the holidays and because it really needed it. But honestly...I knew I was using cleaning, Sam's new regiment and the holidays as a wonderful distraction.

In a continuing effort to live in the present and not stew over the past or worry about the future...I was concentrating on each day. For the worries that wanted to take me over...I wrote them down and put them into my prayer box. I began each day praying for guidance, praying for the people and concerns in my life and then I prayed for a little extra...

Patience to allow me to work with Sam and be a good listener to my friends and family. Courage to face whatever life might throw me next. Strength to be a good friend, good wife, good mom, good person and to be there for those that need me. Faith to my God, my husband and my family. Love for my husband, my children, my family, my friends and my community.

Tonight I need to ask for a little something extra from all of you...extra prayers.

Tomorrow Sam will go in for the x-ray on his hip. This appointment will determine if we stay in Wisconsin or if we head to Miami, Florida to see Dr. Dror Paley, a specialist in the field of Perthes. If the x-ray shows that his hip has stopped breaking down and re-growth is occurring we can wait a little longer and just schedule the hardware removal surgery from his hip and thigh bone. If the x-ray shows that the hip is continuing to break down from Perthes or there is no re-growth we need to move on to a different surgery option. We are running out of time to help Sam grow a new hip bone and Sam's mobility is at stake.

No matter what happens we are thrilled to see improvement in other areas due to his new diet and supplements but regrowing the hip is one of our main goals.

As I go to sleep tonight I am trying to shut off my brain, to concentrate on positive and good thoughts and I keep praying. And as I look at Sam drifting off to sleep without a care in the world...I again thank God. Good Night Everyone!!

Praying, Thinking and Reflecting!!

I've spent these last couple of weeks in deep thought. As I reflect on 2011...it really wasn't one of my favorite years.

Sam started it in a body brace as we dealt with the diagnosis of Perthes...and yet I found hope.

When Sam became more stable my health took a downward spiral...and yet I found strength.

I went on an amazing road trip...and I knew I was blessed.

Ben almost lost his life in a truck accident...and I am thankful that he is still with me.

Sam's Perthes continued to progress...and yet I gained knowledge and found more hope.

My father-in-law was diagnosed with colon cancer...and I continue to pray.

I am often asked how I stay positive and I can assure you that it is through faith alone. I'm not that strong, my emotions are worn on my sleeve for good or bad. I cry at sad movies, heck I can cry at a simple act of kindness. Sam's journey has stripped away my buffers, my shell, my mirage of the strong, independent, capable person I like people to think I am. I hurt deeper, I feel things stronger, and it is only by the grace of God that I pull myself up by the boot straps, smile and carry on. But these challenges...these insights into who I am...are the same things that are changing me, building me, bettering me...shaping me into the person God wants me to become. When I was younger I thought I had things pretty well figured out. I worked hard, I liked obtaining the goals I set, I had plans, I had dreams...and I was going to obtain them.

Hmmm, maybe that was part of the problem...a lot of that thinking was all about me. If I was going to have a successful career, marriage, friendships, life in general...I needed to think about others. I always knew I was a bit stubborn, hard-headed and didn't always take direction very well but I always thought that was a strength. I mean...tell me I can't do something and I'll prove to you I can. I have always been more of an introvert but I want people to view me as an extrovert. I like to be in control and I always thought I did a good job doing it.

But now I'm older, wiser and my journey on this earth has taught me so very much. God knew about my stubbornness and he sent me three children, but two (not just one, that wouldn't have been enough) that required extra parenting and attention. I quickly learned when I became a Mom that I had lost my concept of control. When I found out Ben was dyslexic and had other learning issues I wanted to make that go away. I didn't want him to struggle...and yet it has been through the struggle and challenges that Ben has become the young man I see today. He's creative and he doesn't let much hold him back. He is persistent, smart, impulsive, strong and has one of the most impressive vocabularies and along with his wit, humor and quick come backs he is a joy to be around.

Danielle brought into my world a gentleness and a compassion that forever changed me. She is smart and has a wonderful sense of humor. She has my edge, my determination, my drive but she also has a heap of care and compassion. She shows some of my control issues, my sarcastic sense of humor and my goofiness, but she is stronger and wiser than I was. She can hold her own with both of her brothers and she doesn't feel neglected or left out considering the extra attention they both receive. She has an amazing personality and I enjoy her company.

And how do I even begin with Sam. Sam has taught me so much. If I thought I had any semblance of control Sam quickly let me know that I was mistaken. I will never forget the moment we were transferred to the ICU because Sam didn't seem to think breathing was that big of a deal. I will never forget how helpless I felt as I watched the monitor show me a heart rate that was too high and respiration's that were too low and an oxygen level that couldn't be maintained. I remember dropping to my knees and praying with everything I had for God to help Sam...to save Sam. I realized at that moment that I had no control, and all I could do was pray. I wanted to barter, make promises to God...show in some way, some how that I could still control the situation but Sam's stats quickly erased those thoughts from my mind and I simply prayed.

I wanted Sam to achieve his milestones in the same time frame of a typical child or even better. I wanted Sam to be that child with Down syndrome that defied the odds, that excelled above the rest, that others could look at and feel encouraged. But Sam and God had different plans. Sam didn't crawl until he was almost 2 years old and he didn't walk until he was over 3 years old. Every year I waited and waited for Sam's speech to take off. I was sure that by the time he was 4-5 years old he would be communicating easily and we would be having enjoyable conversations. At 4 years old Sam was still considered non-verbal. He had sounds and some words but he certainly wasn't talking up a storm like the other children with Down syndrome at our NACD evaluations. I had to really listen for Sam's words or to understand what he was saying and that's when I had my "aha" moment. I was a great talker but a not so great listener. Sam required me to become a better listener. He relied on me to talk with him and not at him, to talk at his level and to repeat and add to our conversations. In order for Sam to expand his speech we had to have balanced interactions, something we still strive to work on.

I learned strength and resilience through Sam. Sam's numerous medical issues have required me to be strong and resilient. I had to be able to think on my feet, to not become overwhelmed but instead find my inner strength. I would look at Sam and see his smile through the oxygen mask or watch his eyes light up when his family entered a room, or see him work on his breathing, strength training or therapies just to see our excited expression when he accomplished his goal and I would be stronger. How can I even think of giving up when I'm just the observer and I see this child, my child, fighting, working, challenging himself beyond my expectations.

The hardest lesson to learn has been to slow down and give Sam the time he needs and requires. Sam works with me everyday to instill an appreciation for time. Time given, time spent together, time waiting, focused time, time commitment, quiet time...and the list goes on. I could rush through life, stay on schedule and accomplish so much on my own...because that's what I always did. But then I'm not giving Sam...time. It would be easier to dress Sam instead of wait for him to get dressed on his own. It would be easier to make Sam breakfast then to have him learn how to make it himself. It would be quicker for me to complete the chores then to work through them with Sam. It would be easier for me to fill in the words Sam can't seem to pull out quickly than to wait for him to work them out on his own. It would be easier, it would be quicker...it wouldn't be fair to Sam. It wouldn't be what Sam is so desperately trying to teach me.

I never wanted to be a teacher, it wasn't my passion or calling but I did want to be a good parent. Ben was the first to require me to work more with him. Without training or education and with only the strong desire to help my child I had to figure out how Ben learned. I had to learn how to work with him, help him, challenge him and encourage him. Ben was just getting me ready for my journey into educating Sam. Through my journey with Ben and Sam I have gained a true appreciation for great teachers. I struggle with working with Ben and homeschooling Sam. I couldn't even imagine a class of 20-30 students. I have spent some time in the school system as a parent liaison for special needs families. I have met many great teachers but I still struggle with becoming completely comfortable with how our schools are set up and operate. I feel many schools are doing the best they possibly can to live up to the mandates of our government, but therein lies my problem. I don't feel the government should decide how our children are educated or how and what teachers are to teach. I enjoy working with Sam because I follow his lead, we dive deeper into areas that interest him and skim over those that don't. I don't need to test because my observations guide me on areas he needs more work on. I'm not trained to be a teacher...but could you imagine the wonderful things that could happen if a great teacher was given that freedom. The things our children would learn...the experiences they would have...the learning that could take place. I feel our schools do really well with the Danielle's of the world, those children who learn easily and test well. But we are missing the boat on the gifts our children like Ben and Sam have. They require those really great teachers who are going to figure out how they learn, embrace the differences and are ready to see the amazing outcomes.

Sam has required me to rethink so many things I thought I understood...and to change. I never struggled with school, it was easy for me as it is for Danielle. When I started to homeschool I tried to take my school experience and make it work for Sam. It didn't. He didn't like my well thought out lessons plans. Sam fought me tooth and nail. If Sam was going to work with me he wanted it to be fun. If Sam was going to work with me he wanted me to be available when he was ready. I have learned to incorporate puppets, throwing things, physical breaks, music, toy play, magnets and I never ever refer to it as work. Our schedule is flexible and I have come to realize that I am on Sam's time...not mine. I keep track of those things that work and try to re-create them in other areas of study. I have learned that what Sam doesn't like now doesn't mean he won't be ready for it at a later date...thus the ever growing Rubbermaid tubs of homeschool stuff that exist throughout my house. Sam requires me to be "in the moment" not typing on my computer or talking on the phone, not watching TV or doing a household chore without him...but instead to be there with him...listening, talking, being. I think Sam picks up more from our playing together, building puzzles, travelling, card games, chores, going to the zoo or other community field trips...then any of my scheduled lessons.

Sam has taught me the value of all people. I spent a lot of my younger years critiquing other peoples strengths and weaknesses. As I have gotten older I find myself critiquing my own strengths and weaknesses and now appreciating how we are all different and learning to embrace those differences. What Sam doesn't say is expressed so eloquently in his expressions and actions. I love and appreciate how Sam perceives his world. His reactions are pure, he has no buffers or shell, he isn't afraid to express himself, he chooses not to judge or be judged. He radiates love, joy and an appreciation of e v e r y t h i n g.

Like Sam...I am not worrying about the future...I am living in the day. I will strive to enjoy my time here on earth. I will strive to be present, available, loving and lovable. I am looking forward to each and every day! 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