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

Looking For the Easy Button???

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

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

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

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

Where the hell is that EASY BUTTON???

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

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

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

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

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

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

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

A Day in the Life...Continued

I'm often asked what a "Day in the Life" looks like for Sam and I. Sam is currently homeschooled due to respiratory and immune system issues. Soooooo....I was not one of those parents that had dreamed and inspired to homeschool my children, to be honest I went into it kicking and screaming. But the good news is that I am happy that I did and I like; even love many things about homeschooling which I will try to show here. I currently have one child in public school, one in private school and one homeschooled with some extra curricular in school activities.

I'm also asked many questions about supplements, the SCD diet and our NACD program. I'll see if I can hit on those too. Now, before I get started please understand that this will be a long post. I've never been a person who is short on words but hopefully I'll answer some questions and give some ideas along the way. Also keep in mind, that this is one day and that doesn't mean that this is what every day looks like. Some parts remain the same, some change due to outside therapies, sometimes I have to go to work and sometimes Sam is not feeling well which means we snuggle and he sleeps a lot.

My day usually begins at about 5:45 a.m. when my husband, Jeff gets up for work. I wake up Ben, our now 15 year old (Happy Birthday, Ben) and he eats breakfast. We do any last minute studying and he gets on the bus at about 6:45. Then it's time to get Danielle up, fed and on the bus by 7:35. Usually Sam is waking up by about this time. Now here is one of my favorite parts of homeschooling at least in regards to Sam. I let Sam wake up on his own, he's really not the kind of guy that likes to get woken up...honestly the attitude is much more cheerful when he decides it is time to get moving. I also think it is important to let him get extra sleep if he has not been feeling well. Sam wakes up and gives me my morning hug and kiss....wouldn't trade that for anything. We turn on and put on his bone conduction hearing aid hat. Sam drinks his first dose of vitamins which includes Brain Link, coconut kefir milk, distilled water and a little splash of orange juice. He will normally watch a little bit of television while I prepare his program stuff, feed the dog and take him outside, clean anything leftover in the kitchen and prepare Sam's breakfast. Sam's meals are usually based on the concept of protein, fruit and vegetable. I try to stay away from processed foods but do use some gluten free products occasionally. Sam is on a version of the Specific Carbohydrate Diet because of his immune/respiratory issues, his build up of yeast from antibiotic use and to help heal his digestive tract. I say a version, because we have added some foods back into Sam's daily diet based on his ability to tolerate them. For breakfast today Sam is having a banana, some raw green beans and carrots, a small bowl of gluten free rice cereal with goat milk and 2 minimally processed nitrate free turkey sticks. We pray before each meal and usually touch on a Bible lesson at this point. When Sam has finished breakfast he has a cup of applesauce with his 2nd set of vitamins which includes, CoQ10, Vitamin C, & D for his immune system, Prevacid for reflux, grapefruit seed extract, garlic & an enzyme for his digestive tract, gingko biloba & 3 Speak supplement capsules. Sam is very good at swallowing his supplements with apple sauce because he has learned his food tastes way better when Mom doesn't have to hide supplements in it.

Sam goes up to his room to get dressed and the TV is turned off. He and I usually touch on the calendar and talk a little about the weather outside. Because of Sam's apraxia, I sometimes script his speech for him. So for example, I say "Sam, how does the weather look today", I will then write on his board "It's cloudy, maybe it will snow", he reads this and I act as if he has said it and respond. "That would be great, we could take a walk in the snow". Always, always trying to help him pull out and use his speech appropriately.

We then start our NACD program. Now I'm going to warn you that our NACD program this round is a bit lengthy and we are in the process of figuring out what will work and not work into our day. Also keep in mind that this program is individualized to Sam's needs as are all NACD programs. When I started NACD with Sam everything was centered around play and he often didn't realize that he was working on his program he just thought we were playing. But Sam's processing has come up and a more scheduled day is necessary to help him meet his new goals. Don't get me wrong we still play a lot but we also have some structured time to help move his skills along. My NACD coach suggested I put my program activities on little sticky notes that I can move from one side of the table to the other as I complete parts of program. I like this because it allows me to quickly look at what needs to be done and to easily put physical aspects in between to break up some of the academic work.

Yep, that's a lotta sticky notes. We usually start with something physical to get us up and moving so I decided to do the deep pressure to Sam's legs and feet and then jump on the little trampoline. We are still working on getting Sam to jump, he will jump into a pool but not really just jump on a floor. Then we move over to the computer, one of Sam's favorite things. We start by working on the 1000 most commonly used words in the English language, inputting about 15 new per week and reviewing the old. To help keep Sam's attention I put pictures of his family in between and we talk about the picture...always working on that speech.

Also on this same PowerPoint presentation are his dot cards to help him identify amounts at a glance and his addition flashcards. We are currently working on inputting so I show him the dot card, tell him the amount and move to the next one. I love using PowerPoint because I never have to worry about misplacing my cards and I can make changes as needed. We tend to go through new words twice and the review words once. But this process is repeated a second time later in the day. After this we run over to the punching bag, roll our big spongy dice, read the number and punch the bag that many times.

Then it is back to the computer to work on some reading. One of our fellow NACD families had scanned in some of the stories from a Level 3 reader and added some great pictures so we read those onscreen. Sam is still not comfortable reading the Level 3 readers from the books, I think the amount of text on a page and the size of the text makes it difficult for him to track and he becomes tired and frustrated. But when the text is onscreen you can enlarge it, show one line at a time and highlight the words as you go. Sometimes with Sam it's not his inability to do something it's figuring out how to make it work for him. After reading we usually move on to Zoodles.com or Webber HearBuilder Following Directions. He loves both of these because he is playing games and doesn't seem to realize the important areas we are working on. After 10 to 15 minutes it is time to get some exercise and play WII tennis, great for hand/eye coordination. I still need to assist Sam hand over hand but each time we play he begins to participate more and more. We are also working on bowling and baseball.

Then it is on to some speech activities. I place sticky notes on 4 items in one room, Sam has to locate them and then we talk about what the item is, who's it is, where it is and what it is used for. If Sam has difficulty answering we use our scripting again to help him along. We move on to some trigeminal stimulation and facial stimulation to wake up those muscles in the face. Then sitting in front of a mirror we practice moving both the left and right side of our mouth with a little, OOOO & EEEEE work. Because of Sam's brain injury the right side of his body is a little weaker than the left
side so we work on toning up both sides. We then move on to some oral motor exercises, he watches me move my tongue up behind my front teeth, then down behind my lower front teeth, putting my tongue into my cheeks, puckering, smiling and a few others and he trys those activities himself. We then work on our functional words and phrases with a lot of emphasis on proper articulation. This can get boring for Sam so sometimes I add my own funny faces to the oral motor part or I ask him to repeat the words into the tape recorder or to Dad on the phone or to his dog Buddy. Buddy will normally reward him with a big old wet kiss. We usually break into something physical again like a WII game, trampoline, punching bag or practicing connecting Buddy's leash and taking him for a walk around the circle.

We then return for a math computer game, one of my current favorites is Reader Rabbit Preschool through 1st Grade. Math is not one of Sam's favorite areas so we are still working on the basics. This computer game has a lot of fun activities that if I tried with Sam on paper or with manipulative's he would fight me but he will work on the different areas in this game. Again this was another area that we had to figure out what was going to work with Sam. Please don't get the idea that everyday is a smooth running operation because it's not but each day we get a little bit better at figuring out how to work together and still make it kinda fun. We also have a math game called Stomp that requires Sam to step or stomp on the button which causes the numbers to fly off and then he has to listen and replace the numbers in the right order. We have not moved to the higher functions of that game yet.

We introduce 20 new receptive language cards to Sam a week. I love printing off the free flash cards from the ESL (English as a second language) websites. Due to Sam's hearing issues he has not always picked up on the words people use around him. He needs to have new words introduced to him with good articulation and a visual or picture. When I went to a deaf and hard of hearing conference they emphasized the need to introduce common items found in a child's everyday environment in a way that they can understand. For some children it is through sign, others may need to read the word and for Sam the picture and written word seems to be the best approach. We are basically working to expand his understanding of his environment and to expand his speech. Sam understands what a table is but now we are working on coffee table, corner table, kitchen table, night stand...more advanced receptive language. Just think about the speech you use everyday, couch, sofa, love seat, chaise, davenport...all talking about the same thing but Sam needs to be introduced to each of them and realize they are different ways of talking about the same thing.

We do a lot of written directions with Sam. Here is an example of a list he reads through himself and then performs each step while we get ready for lunch. When he has completed a step we check it off, which is one of Sam's favorite parts. Sam's comprehension when reading a book is not as good as his comprehension when he is reading and doing his written instructions. I'm hoping that as we continue to work on things like written instructions, read and do, treasure hunt he will begin to improve his book comprehension. It just demonstrates that Sam's comprehension needs to be tested in other ways, ways that make sense and work for him.

An area Sam loves is fun unit studies. I've shown what those have looked like before on my blog when we were studying about animals. The idea behind a fun unit study is to take something your child is interested in and learn everything you can about it. Dive into it, explore it, enjoy it. It has always been interesting to me how we tend to work in so many different areas of learning (math, geography, social studies...) just by learning more about something Sam is already interested in. This is definately another one of the areas I love about homeschooling!!!

An area we work on each day is auditory and sequential processing. I can't stress this activity enough. Why??? Because here are the areas auditory and sequential processing help with:

Academics (students with strong processing skills demonstrate high academic skills)
Emotional maturation
Communication and language
Comprehension
Learning
Self-efficacy
Concentration
Attention span
Creativity
Decision-making
Alertness
Problem solving
Reasoning (correlates high, .8 to .9 with working memory)
Multi-tasking

Sam is currently at a 5 in processing, meaning I can name 5 things with a second in between, I then put 7 picture cards out and he has to choose those 5 things in the order that I gave them. Please find out more and check your own processing for free on NACD's The Project Website, http://www.nacdtheproject.com/. As you test your own processing you can learn how to do visual and auditory sequencing with your child.

As you may have noticed this does not cover all the sticky notes you saw, some of the activities are repeated numerous times and some of the sticky notes are reminders of behavior modifications such as redirecting all sensory play or enforcing time out for non compliance. This is the structure we try to work on. Some days Sam has therapies which alter/move and in some cases eliminate different portions of program, some days we have wonderful compliance and some days not so good compliance. When Sam is ill we slow down or don't do any program. And some days life happens and we don't get much done but by organizing and having a plan we have something to work toward each day. The sticky notes are more for me than Sam...I need a schedule, I'm too easily distracted. I also need to set short term goals to help me work into and maintain our homeschool program. The underlying structure keeps me motivated and organized, Sam's mood, interests and motivation determine the day to day.

By lunchtime the majority of our program that we are going to complete that day is done. Sam will eat a lunch of nitrate free hot dogs or some type of healthy protein, sugar free ketchup, cucumbers, dip and an orange and he will take his last set of vitamins which consists of one more Speak capsule, zinc and Longvida Curcumin. Snacks are usually turkey sticks, fresh vegetables with dip, fruit smoothie, fresh vegetable juice, Organic Coconut Bliss Ice Cream, popcorn, fruit, organic blue chips... The afternoon is spent running errands, reading a book together, house chores (Sam likes to take out the garbage, empty the dishwasher, fold clothes, gather the laundry and he works on cleaning up his toys with a little encouragement), going to the library or some field trip, sometimes we just watch some TV or take a walk. Sam will now be attending a gym class twice a week in the afternoon at the public school. I try to have everything done with Sam by the time Ben returns home so I can focus my attention on working with him and getting Danielle to whatever practice or game she may need to go to.

Soooo, this is a glimpse of a "day in the life" for Sam and I. Although we have structure we also have a lot of flexibility on what we are studying or how, games can change, fun unit studies change and it is that ability to change, to try something different when something doesn't seem to be working that I and Sam most love about homeschooling. We have no set procedure, I was not taught to teach in any particular manner and in that lies the beauty of homeschooling and why Sam and I enjoying homeschooling. I spend time watching and learning from Sam how he learns, what works for him and I don't give up. He and I are in this together, in good times and bad, crabby days and happy days but always, always moving forward.