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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

be quiet is something he will be able to do.

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

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

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

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

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

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

First a call to Daddy!

Then a quick call to Ben!

And finally checking in with Danielle!

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

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

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

A Little Inspiration!!

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

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

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

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

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

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

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

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

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.

So Much To Blog...and So Little Time...Let's Talk About Hearing

Ahhhh, back for more therapy...that is what I consider my blog. I like to think that when I write I'm helping someone somewhere and I know that I'm working through a multitude of thoughts, worries and concerns that when put on paper don't seem as overwhelming to me.

As most of you know Sam has been in a whirlwind of medical appointments. One of those appointments was audiology. Sam has a mild bi-lateral conductive hearing loss which has contributed to his delayed speech and auditory processing issues. To read about Sam's journey to hearing, read here. Sam has a BAHA hearing aid which he wears on a baseball hat. Sam's hearing was re-checked and he still demonstrated a mild bi-lateral conductive hearing loss.

The BAHA has really helped to improve Sam's speech but it didn't have as much of an impact on listening, processing and communicating. Here's my theory, Sam didn't hear well so the process of listening was frustrating. He picked up as much as he could visually and became an excellent visual learner therefore turning off his auditory channel which didn't seem to function well anyway. With the BAHA he has selective listening but he is so used to not using his auditory channel that you really have to get his attention for him to activate listening and then to process what he is hearing. Sam likes to talk at you instead of with you. To get him to talk with you, you have to get his attention which means asking him to stop and listen. Unfortunately listening appears to be a lot of work and Sam will only do this for short spans of time. So we are working on helping him to expand this window of listening.

One area we work with is The Listening Program (TLP). TLP as stated in their information is a method that can facilitate profound change in beginning to experienced listeners, in those recovering from brain injury or dealing with sensory processing challenges to those who are seeking academic or career achievement.

Listening is a process that involves functional, emotional and psychological components. It relates to the function of our neuro and auditory physiology, and the motivation and desire to communicate. Listening is more than the passive act of hearing. It requires the ability to direct the ear and brain to work in harmony to perceive, discriminate, and process particular sounds, along with the desire to communicate.

Basically Sam's ears and brain are not always working in harmony. As I look through the list of symptoms of auditory processing problems I can pretty much check off each one as an issue for Sam.

• Has difficulty listening and paying attention. (Yep, that would be Sam and most of the males in my household.)
• Misunderstands spoken information, directions or questions. (Welcome to my world!)
• Frequently asks "huh?" or "what"? (Add that to the 1000 times he says Mom in a day.)
• Needs to have directions or information repeated. (Which can lead to taking an average task and adding 20 minutes.)
• Has poor auditory sequential memory (We are still at a 4)
• Is easily distracted by background noise (To Sam conversation is background noise not a chance to communicate) (To Sam the noises in the environment trump a human voice every time.)
• Finds some sounds uncomfortable or painful. (We did not see this until we added the FM system) (My voice appears to be painful.)
• Has trouble hearing similarities and differences in sounds. (Sam can tell you the sound of a letter if he see's it but can not always identify the letter if he hears the sound.)
• Has poor phonics skills for reading. (Don't even get me started...HELLO...there is a reason why we work on site word reading extensively or the boy would never be able to read)

TLP is a safe, effective, drug-free approach that helps improve brain function, reduce stress, and trains the brain in the auditory skills needed to effectively listen, learn, and communicate. It consists of 10 cd's which address full spectrum, sensory integration, speech and language and high spectrum.

TLP works on these related functions.

Zone 1-Sensory Integration (lower frequency sounds) which impact balance, rhythm, coordination, muscle tone, body awareness, sense of direction, laterality, right/left discrimination.

Zone 2-Speech and Language (mid and higher frequency sounds) which impact memory, concentration, attention, speech, language and vocal control.

Zone 3-High Spectrum (higher frequency sounds) which impact energy, intuition, ideas, ideals, spirituality, creativity and auditory cohesion.

With all of these benefits I do TLP along with Sam. I use a splice to allow him to be connected to his wireless or audio adapter and I use headphones. We both benefit from this activity.

TLP using a bone conduction headset is what helped us to identify Sam's hearing loss. He functioned better in communication after listening to TLP with the bone conduction headset. Now we use his BAHA as a direct input of TLP. We can do this with an audio adapter or his new wireless FM system. Here is what Sam's FM receiver looks like attached to his BAHA. For those wondering, that is one expensive hat, the BAHA cost around $6,500.00 and the receiver adds an additional $1,400.00.

The transmitter then gets connected to the cd player.

And Sam plays with his trucks in the sand while he listens to the 15 minute segments twice a day.

Sooooo, what do I notice in using TLP with Sam and for myself. I recently listened to a book on tape and honestly it was very difficult for me to listen and follow, I found myself having to go back and relisten a lot. I also have noticed that I struggle with background noise and staying in a conversation and if I'm completely honest I talk more than I listen. Since doing TLP I enjoy books on tape and don't feel the need to rewind, I think I listen better although I still love to talk (hence the blog) and I can stay with conversations better. You are never too old to improve your listening skills.

As for Sam, not as easy to determine but the window of listening seems to be increasing. We are still making progress in speech and listening and his sensory sensitivities have continued to decrease. He is trying to communicate more even picking up on conversations that normally he would have just shut out. TLP is yet another piece of the puzzle to help Sam communicate. I have learned on this journey that each piece gets us closer to the whole...so we continue on.

To learn more about TLP go to www.thelisteningprogram.com for a provider in your area. We purchased the program through our NACD program and share it with members of our Wisconsin chapter.

Love You My Heart!!!

I've missed writing...it's my therapy...but life has been busy. Sam and I are finally healthy again. I'm hoping my fevers and inflammation have gone for good and with spring and some sunshine Sam will stay healthy too.

Sam continues to make progress in rehab but we still have good days and bad days. A good day is a steady gait and Sam walking independently. A bad day is Sam limping, leaning to one side, feet turned out, crawling and asking for his wheel chair or spending a good share of the day reclined in his bed, on the recliner or on the floor. For the last 5 days we have been stuck in a bad pattern which worries me. Sam is leaning to the right, limping a lot and doesn't want to weight bear much on the left side. Sam is having some type of pain or discomfort but simply modifies his positions to accommodate, he doesn't complain and he never tells me it hurts. Sam just deals with whatever comes each day and he does it with a smile. To a stranger he would seem his typical self. To me his Mom, I notice the change in his attention/focus, the audible sighs when he gets into a more comfortable position, the turning out of his foot and change in his gait, the way his spine curves to the right, his reduced patience, the tension in his face when he steps down on the left side, the change from standing to sitting when he gets dressed...the way he runs his hand over his bike but won't attempt to get on. We will be seeing his surgeon and rehab doctor next week.

When Sam reads he becomes very fatigued. He yawns a lot, looks around, tries to refocus and sometimes he begins by reading the word to the right of the one I am pointing at. He also holds his Ipad way too close to his face...could be a habit or it could be a vision issue. We will be seeing his optometrist next week.

Sam spent 7 weeks in bed with his body brace on and he couldn't wear his hearing aid. His speech took a little backslide and we are having some difficulty regaining ground. His speech therapist suggested a tympanogram and having his hearing rechecked to make sure there is no fluid in the ears or that his hearing issue has worsened. We will be seeing his audiologist in the next few weeks.

With Sam requiring use of his walker and his wheelchair for longer than I anticipated I decided it is time to break down and get a handicap parking pass. I'm filling out the paperwork and will take Sam into his Pediatrician to have it signed within the next couple of weeks.

Add to this schedule 2 speech appointments each week, 3 OT aqua therapy appointments each week, 1 hour of homebound public school instruction each day, PT exercises each day and Sam's homeschooling and NACD program for 3+ hours each day...and I begin to spiral.

I feel that uncomfortable, gripping, heart breaking feeling that comes with parenting a child with multiple special needs. In just a moment...if I thought about it enough...I could get to that point where I want to withdraw, curl up into a little ball and let that feeling of being completely overwhelmed wash over me. No one would blame me.

But then I look at Sam, how he continues on...how he perseveres through pain, through hearing issues, through vision issues, through processing issues, through his daily life and all the challenges and struggles that come with it...and he smiles.

Today as we were driving home from our last therapy appointment and my mind was reeling from everything I heard today...Sam tapped me on the shoulder.

He said, "Mom, Mom".

I answered, "Yes Sam".

He said 4 simple words that touched my heart and soul and made me forget every thing I was thinking.

He said, "Love You My Heart" which in Sam speak means "I Love You With All My Heart".

I replied with tears in my eyes, "Thank you Sam and I love you with all my heart too!"

He smiled his confident smile and returned to looking out the window. The challenges can never equal the blessing....that is Sam.

Talk To Me, Sam...A Speech Moment To Cherish!

When Sam was younger I prayed for speech. I prayed that my non-verbal child would someday talk. I wanted to hear Sam talk, but as often happens, my prayer was vague and lacking definition or as Sam has grown my prayer has also grown.

So...let's take a moment to redefine.

Lord, what I really want is to communicate with Sam and Sam to communicate with me. I would love his oral motor, processing, hearing, listening, receptive and expressive skills to work as you had originally designed them. Amen!

There that's better, now you can debate with me that God did design Sam as he wanted him to be but I believe God expects each of us to develop. We don't come into the world with our potential defined...we come in helpless and innocent and we grow, mature and develop along the way.

In my mind, I feel Sam just has more developing to do, he requires more time and work and along the way God is working on some of the skills I need to develop. Sam is teaching me patience, to slow down, appreciation, joy in small things, laughing often, acceptance of that which is different, empathy, unconditional love, thinking outside the box, and he challenges me to question the best ways to teach, interact and enjoy our life together.

I will never say I understand God's plan or that I can even begin to figure it out but I think he gives me moments or windows when I get to see the progress and that which is to come. I want to share one of those with you.

On a cold, snowy day Sam and I decided to watch a movie together. Now if I let Sam pick we will watch one of his favorites which I reserve for medical appointments only. His favorites are "Wild Hogs", "Like Mike", "The Pacifier", "Tarzen 2" and one Jeff would rather not have me mention "Uptown Girls". I actually like each of these movies too but when I can sing the "Panda Song" from "The Pacifier" or I know the theme song to "Tarzen 2" by heart or Sam does the beginning actions of a movie or recites the words before they are said I think they need to only be watched in times of high stress. Sooooo, I chose the movie.

I don't always have a lot of luck in getting Sam engaged in new movies. If it doesn't catch his interest and there is no popcorn or soda involved it is not going to be enjoyable. So I grabbed the Wii control to check out our options on Netflix. Have I ever told you how much I love the option of playing Netflix on the TV through the Wii??? Well, if I didn't it ROCKS...oh wait, let me clarify....it rocks if I have control of the Wii control. I never realized you could play back scenes or play only your favorite scenes until I was taught this by Sam. Sam quickly figured out the Wii control and how to replay his favorite scenes which is not something good for a child with stimming behaviors but yet it shows his ingenuity and resourcefulness.

I wanted something educational and interesting but what I didn't know was that God had chosen this moment to inspire me again. I chose the Imax movie Beavers.

Now I know you are thinking, really Sue, how inspirational can beavers be?? The movie is filmed from the perspective that you are the beaver. So when the beaver jumps in the water you jump in, when he/she goes through the grass you're following after, when he chews down the tree you're looking up watching it fall....I think you can get the idea. There were a couple of things I loved about this movie. There wasn't a lot of auditory or words to distract Sam or frustrate him into tuning out. The visual aspects of the movie were amazing and engaging. In reading the movie reviews a lot of people were unhappy that some of the movie was staged or that they used tame beavers and it wasn't an actual representation of the wildlife...okay....but it worked for Sam and I.

Before I explain why this movie was a success for Sam let me explain some of Sam's issues with communicating. Sam has a hearing issue and I truly believe that a child with a processing issue along with a hearing issue is going to struggle with speech. Sam thrives on visual input but struggles with auditory input. Sam has hundreds of words but struggles with pulling out the right word at the right time. Sam likes to talk at you but not with you. Sam struggles with attending to a conversation or question and he often answers incorrectly. Sams finds it difficult to stay on topic and tends to have very random conversations. Sam has found that playing movies or programs in his head is easier and more understandable to him than the effort required to hear, listen, think and reply so he often chooses the easier and more enjoyable route also known as stimming. Sam gets easily frustrated when he attempts communication but someone doesn't understand what he has said. Sam loves to talk about food about 90% of the time.

I recently came across a blog, www.hearagain.blogspot.com of an adult that had hearing but then became deaf and is now regaining hearing through a cochlear implant. He answered the question what is it like to be deaf?

Firstly, my answer is that, you are never in silence. Like most hearing impaired people I have something called tinnitus. It's a sound that you hear in your 'mind' - it's very difficult to explain really but I distinctly remember getting it after I was exposed to loud sounds such as discos (I was young once!). In my right ear it's vaguely like the sounds coming from an untuned television (white noise, I think they call it) and in my left it's a metallic hum something like an engine. It gets uncomfortably loud when I'm angry, or sick, or on antibiotics sometimes.

Anyway, back to the original comments. It's not easy to explain what it feels like. But, imagine one of those simple outline drawings that you sometimes see - they give you the picture, but there's something missing, there's the richness of colour, of dimension, the concept of movement that you only get from a full colour picture. That's the closest I can explain it really.

It's very isolating, it's very frustrating being deaf. Some people completely come to terms with it to the point that they prefer to be deaf....

Now what I hear is broadly comparable to hearing underwater, that bubbly, blurred, blocked sound that comes in. If I had to apply a texture to it, I would call it green pea soup (thick, filling but strangely satisfying), without the bacon (which I allegorise with the background sounds that one hears) to make it more interesting. If I had to apply a colour I would say a very faded red - a distant memory of an interesting colour. My mind has adapted and accepted the sounds I hear as 'normal', but they aren't normal, by any definition.

Wow, after reading this I looked at Sam differently. I don't know how Sam hears or what he can hear. I have been told that his hearing loss is mild and yet a hearing loss of any kind with a processing issue has got to be difficult. It makes sense why Sam prefers to swim underwater, to blur the auditory world along with the benefit that people don't try to talk with you when you are under water. I think Sam's hearing fluctuates with illness. I also feel that Sam's world is missing the auditory portion and therefore it is lacking the fullness and experience we have daily. Sadly, I often think Sam would prefer to be deaf, to not have to deal with a confusing auditory world and then we have a moment like the movie....

As we began to watch the movie Sam and I immediately found the beavers to be adorably cute creatures. The sounds they made sounded similar to Sam when he was very young. Along with the wonderful visual images the sounds of nature and the beavers pulled you into the movie.

Sam and I began to talk our way through the movie and with the added visual images that we were both attending to the conversation blossomed:

Sam: Go, beaver, swim, swim.

Sue: Wow, the beaver swims fast.

Sam: Out, water.

Sue: The beaver is getting out of the water. Where are you going beaver?

Sam: Chew tree (followed by chewing noises).

Sue: Uh, oh

Sam: Tree falling, uh oh boom (Sam laughs)

Sue: Watch out beaver!

Sam: Move, tree fall you.

Sue: Move beaver, the tree will fall on you.

Sam: Big tail (said after he heard and saw the beavers tail go over a branch and thump on the ground.) Funny, I was thinking the same thing.

Sue: Big tail for swimming.

Sam: Swim fast.

Sue: Yep, that big tail helps him swim fast.

At this point, I am thrilled with the amount of interaction, Sam staying on topic, Sam answering appropriately, Sam enjoying an auditory exchange...we are communicating. It's funny how God works...at this point in the movie they show a beautiful rainbow and the meaning of the rainbow is not lost on me in any way. The Bible shows us that when we look on a rainbow God is looking at that rainbow too. When he looks he remembers his covenant. When we, as individuals, look at a rainbow and we remember also this same covenant there is a meeting of minds. Sam pulls me back out of my thoughts...

Sam: Mom, bootiful rainbow.

Sue: Yes, Sam it certainly is. (I say with tears in my eyes)

The clouds become dark and Sam says:

Sam: Uh oh, storm coming.

Sue: A big storm is coming.

Sam: Snow, winter.

Sam: Mom, ice water.

Sue: The water has ice on it.

Sam: Beaver, cold.

Sue: The beaver has warm fur.

Sam: Coat

Sue: His fur is like a coat.

Sam: Dark, night time, moon out.

Sue: The moon shines at night.

Sam: Home (and he snuggles with me) Daddy home.

Sue: Mom and Dad are home with Sam at night.

Everyday Sam asks me when Daddy, Danielle and Ben will be home and I thought it was just one of his repetitive phrases but now I understand that night means we are all home together and that is important to Sam.

During the next part of the movie the beavers are mating which Sam refers to dancing (that's okay with me, I'm okay not to have to go there) and they have babies. Sam begins again.

Sam: No baby, stay here (as the mother beaver keeps the babies together)

Sam: Be careful.

Sue: The mother beaver takes care of her babies.

Sam: (turns and gives me a hug) (No words needed)

In the next scene the beavers are chewing trees further away from the water and a bear comes.

Sam: No bear, go away.

Sue: Don't hurt the beaver, bear.

Sam: Run, beaver, run.

Sue: Get in the water.

Sam: Beaver okay? (As he looks at me concerned)

Sue: There's the beaver, he's okay Sam.

Sam: Good, naughty bear.

In the next scene the beaver encounters a skunk. I can see Sam is trying to pull out the word skunk but is struggling.

Sam: Mom, mom, mom (hesitating)

Then he plugs his nose and says "stinky".

Sue: Skunks are stinky.

Sam eyes light up. "Skunk, yeah!"

The next scene was Sam's favorite. A bear is climbing the tree the beaver is chewing on and the tree and bear fall into the water.

Sam: Naughty bear, got you.

When the movie ended I had the surreal feeling that I had witnessed a communication miracle. Sam moved on to something else and I took a moment to pray and thank God. I will leave you with a quote from a friend. Jenny Marrs, a fellow mom of a wonderful young man with Down syndrome wrote this to me and it has always stayed with me:

God is good...it's these little windows of revelation that let us know every now and then that we are on the right path. It's the faith we have to keep in between these times that is so difficult. I live for the revealing moments....they make the struggle worth it.

Reflecting and Praying!

Wow, 2010 was an amazing and again challenging year. I'm pretty sure that God doesn't want me to get bored....honestly.....a little boredom would be appreciated. REALLY...I would be okay with that.

But when I look back on the past year I have so many positive things to reflect on. When a new year begins I always find myself looking back further than just that year, I tend to reflect on the progress I have seen through the years. This crazy journey I am on with my children requires me to always reflect on where we started and to appreciate just how far we have come. That reflection allows me to remain positive and focused as I start each new day.

Benjamin will turn 16 on January 23rd and he is hot on my case to set up his driver's test. Where did the time go?? I still look at Ben and see the little boy that felt the need to use his tools to take apart everything in my house. Ben was never happy until he had taken something apart, figured out how it worked and sometimes made it work better and other times just smashed it to bits. Hmmm, funny...some things never change. I was just looking at pictures on Facebook of his Rhino, the truck he bought when he was 14 that got rolled at J & H and his current love, the monster diesel that has caused the UPS man and I to see each other more than I thought possible. I used to get excited thinking someone sent something to me or something I ordered came in from Land's End but now I seem to only get packages from www.puredieselpower.com. Don't even get me started on the dating...still taking deep breaths to get through that.

Ben as a child always had unlimited energy and a never ending stream of questions which some felt was ADHD and that medication was a must. But I never went there...although the year I homeschooled him I was tempted. Instead my mind just kept telling me we had to help him learn how to use that energy productively and I had to come to terms with the fact that I was going to hear the word "Mom" a minimum of 1,000 times a day. I needed to learn how he learned, what worked and what didn't so I could help him and those that worked with him. I still chuckle to this day when I see Ben skip across a room because he is excited...it was always like a little release of stored energy. I have been negotiating with Ben since he was three and I often feel that he just gets better at it and I get....well, more tired. Ben and I have a point blank relationship. He has never held back in letting me know what he is thinking or how he is feeling...I just wish sometimes he would curb his impulsiveness and comments so we could have a productive conversation instead of an explosive one but I understand the need to let off some steam too...it's just part of having an intense personality. I have always preferred that his outbursts be with me and not at others...because I love him, I can forgive him and I know the outbursts are often due to his feeling challenged or misunderstood. I walk a fine line with Ben trying to help him advocate for himself and at the same time motivate him to try harder.

I look at Ben and remember the frustrated little boy and the long hours of homework as he struggled to focus and as his struggle with reading, writing and spelling threatened to destroy his self esteem. We have come so far. I rarely have to do homework with Ben, we still team study for exams and I sometimes help him organize larger projects but he is doing well and has maintained his ability to remain in the regular curriculum without LD or special ed help. He is a fighter and I am so very proud of him.

And then there is Danielle, my sanity child...my ray of sunshine. She has an innate gentleness and kindness about her. She has always shined bright even when the attention on her brothers seemed to be greater. I have to remind Jeff and myself that she is a gentle soul, unlike her brothers more powerful personalities and she requires gentle persuasion. In recent years she has come into her own, able to stand up to Ben and put him in his place while getting Sam to do as she asked within a count of 3. Danielle makes me laugh, she and I are kindred souls and enjoy spending time together....of course sometimes during our road trips we all need a little space but really...who wouldn't after being locked in a van together for 10-15 hours at a time. We pick on each other and we laugh a lot. She is simply an amazing personality and I know God sent her into my life to help me maintain some sort of balance. Ummm...good luck with that Danielle.

Danielle is my sports playing, Zumba queen. She is so much more coordinated than me and I know she is going to do great things in this world and continue to be happy. Jeff and her share a special relationship since he is the driver to most of her practices and games. Don't even get the two of them started on John Tesch...they are addicted to his radio show...I get to hear so many random pieces of wisdom. Danielle was an amazing baby and toddler and she just continues to grow and develop into a wonderful, dare I say...teenager. I love you Muttsy!

And Sammy...my amazing big guy. Oh, the lessons you have taught me through good times and bad. I still think about Sam on our road trip this summer climbing mountains, hiking for hours and never ever complaining that his hip hurt...but it probably did. This little trouper went on to learn how to ride his bike, I just watched the video the other night when I was feeling a little sad. He worked so hard to achieve that goal and took such pride in showing everyone what he had accomplished. As I watch the video I can't help but notice how stiff his left hip looks...didn't notice that when we were in the moment. And now as Sam is in his 5th week in a full body brace he continues to amaze me with his compliance and attitude. I would not be this great of a patient and yet he greets me every morning with a smile and a hug. We are quite the pair in the morning, him in his body brace and me struggling to bend over for a hug because my back is so stiff.

I am thankful for the amazing road trip we had this summer, its memories have helped me get through the rough times. As I look at the pictures I smile at the happy times and relive the adventures we had. God surely set that trip up knowing what the next couple of months would bring.

The other night I watched a video when Sam was 3 or 4 and he only made sounds that we hoped would some day turn into speech. Sam still struggles with speech but he has come so far. He has tons of words now and many phrases to address his needs. I still wait and long for conversational speech, active listening and appropriate responses but I am encouraged by the steady changes I am seeing.

In Sam's 10 years he has had more struggles than most of us will face in our lifetime but he never lets that get to him. He just continues on with a confidence and attitude that all of us should learn from.

Ben, Danielle and Sam have taught me to change because that's all I really have control over. I determine how I talk, act and feel and in kind that determines how my children talk and interact with me. Ben's difficult situations challenge me to treat him the way I would like to be treated without bringing in the emotion or negativity that so often can take over our interactions. Both Ben and Sam love attention, but Sam is teaching me the power of positive attention. He requires me to place more emphasis on the things done right than what he attempts and is unsuccessful at. If I get frustrated he is more than happy to follow suit and just shut down. I am a work in progress and if I am tired or anxious I struggle to maintain my composure but I try to remember the lessons Sam is so desperately trying to teach me. I love you big guy!

I have never been a person that made New Year's resolutions...I instead make daily resolutions. I resolve to treat my children with positive attention and to be open to their level of communication. I resolve to focus on the positive aspects of my life and count my blessings. I ask the Lord to guide me every moment of every day...I can't do this life alone. I have often had people tell me I'm an amazing Mom and they don't know how I do everything I do...but if I'm honest...I'm just a regular person that has been put into extraordinary situations and by the grace of God, we get through.

This year I hope to open my heart and mind in order to continue my efforts in building community around Sam. Sam and I have been together since day 1, during hospitalizations, medical crisis, homeschooling and home therapy and everything that has been required due to his medical and immune system issues. We have been through a lot and we enjoy each other and work well together but Sam needs to learn how to interact and work with others too.

This is an issue that is so hard for me.

I get anxious when I see someone interact with Sam and he gets frustrated because they don't understand him. I get anxious when Sam won't show his skills and abilities and I worry that a teacher or therapist will lower their expectations instead of figuring out how to work with Sam. I get anxious when I see another child ignore or treat Sam differently. I get anxious that someone will miss a subtle change in Sam that is a red flag for me that medically something is about to happen. I get anxious that Sam will be overloaded by too much sensory stimulation and his behavior will reflect that. I get anxious that a child may run into and bump Sam causing him to fall on his fragile hip that has just been rebuilt. I get anxious that someone may not recognize that Sam's behavior is a pain reaction and not Sam being stubborn or non compliant. I get anxious that both children and adults will talk less to Sam because he is difficult to understand or he doesn't always answer appropriately. I get anxious that someone may perceive Sam's ability as low due to his limited speech expression instead of giving him other ways to express himself appropriately. I get anxious that someone will misinterpret a hearing issue as a cognitive issue. I get anxious that Sam will get frustrated and shut down. I get anxious that Sam will withdraw and enter his own world.

I...just....get....anxious...

because I love this little boy with all that I am. I will end with something I found on a fellow blogger's site, thank you Debbie at Finding Normal, http://debbie61497.blogspot.com/:

WHEN

When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown