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!

Through A Dog's Eyes - A Book Review

I was contacted by a public relations person to review the book 'Through A Dog's Eyes' by Jennifer Arnold. Hmmm...my first thought was what would this have to do with my blog's purpose or intention? As I read the review I was intrigued to learn that the book was written about Canine Assistants which is a non-profit organization dedicated to providing service dogs for children and adults who have physical disabilities or special needs. Canine Assistants does not charge for the service it provides, rather, it relies on the generosity of those who recognize that helping one benefits us all.

Okay, now you have my attention but as I began to read I found myself drawing some unexpected conclusions and having deeper thoughts than the author had probably imagined or intended. I began reading the book from the perspective of a dog owner but I quickly found myself drawn into a different area. As the parent of a child with special needs I find myself often trying to make sense of my world and Sam's world and trying to relate or explain our thoughts, feelings, perceptions, interactions and life experiences in my blog.

Now I should also explain that I am a dog lover and I enjoy watching the wonderful relationship that has developed between Buddy and Sam, but I'm also very aware of the wonderful relationship between Buddy and I. As much as I love my dog I have always struggled with people comparing dogs to children...and yet as I read this book I found myself relating a lot of what the author was saying to my interactions with Sam.

Sam is unlike any person I have ever met...Sam is Sam. He is an individual with thoughts, feelings, and emotions and although he is not always able to verbalize everything he knows or wants to say, and his struggles and challenges can often be the first thing a person notices we all should take the time, be patient and through caring and kindness interact with Sam to meet and work with him at his level and create a relationship that we both enjoy. So when Jennifer was talking about working with dogs and how:

"What changed my methodology the most was my increased understanding of dogs and their perspective of the world we share. My approach to handling changed as my understanding of dogs grew, until one day I realized that it was morally wrong to treat dogs with anything other than patience, understanding and kindness."

HELLO, how could I not relate?? It's all I ask of anyone who interacts with Sam...look past the labels and diagnosis and truly understand his world and treat him with patience, understanding and kindness. It has taken me years to be able to converse with Sam and the level of patience required as he says "Mom" 1,000 times a day is indeed challenging, but this is my child that I was told would probably never talk. Sam's diagnosis of Down syndrome, brain injury, conductive hearing loss and apraxia should have been enough to keep him non-verbal. And yet...Sam is verbal and he is expressive and most of all he wants to interact. But how long would it take for Sam to shut down if the person he talked to wasn't patient enough to really try to understand his sometimes difficult speech or if they got tired of hearing him repeat phrases as he practices his articulation? How many times does my heart break when Sam ventures out and says "Hello" to a person but they don't even slow down enough to respond and instead choose to ignore him. How often do people look at Sam's behavior as an issue instead of an attempt to communicate.

Now I look at Buddy. Buddy is a wonderful dog and treats Sam with gentle compassion, patience and understanding. It was interesting how my thoughts and feelings automatically went to Sam and Buddy was the afterthought. I realized that some of the early training we had done with Buddy was probably not very useful to him and we have had better success with a more gentle approach. It's funny how I can look at Sam's behavior and I understand the need to figure out what he is trying to communicate but I didn't do the same thing when I was working with Buddy. This book made me rethink many of my interactions with Buddy and his behavior in different instances began to make sense. Even though the author agrees that dogs and humans are different and should be viewed as such she also demonstrated many ways in which we are the same and that we should understand and respect our differences.

Another area I pondered on was when she talked about how effective positive reinforcement is when training a dog. Hmmmm....didn't Sam's pediatrician always tell me to catch Sam being good and praise him for that behavior instead of always addressing the bad behavior. Both of my boys thrived on attention, the problem is they thrived on both positive and negative attention and didn't really seem to care either way as long as they got attention. So I spent a good deal of my time handling bad behavior instead of praising good behavior. When I changed...so did they. Even our home program asked us to always have a positive environment. Buddy thrives on positive reinforcement and honestly he doesn't seem to know what to do with negative interactions. And again I try to remind myself that dogs and children are very different...I think???

I loved the stories of the people with special needs and their dogs. Some of them made me tear up and some of them just plain amazed me, especially the stories about the seizure response dogs. It was interesting to read the history and theories about dogs and find myself drawing the same conclusions as the author. Jennifer also talked about the personality testing they do with the dog and recipient. I found it interesting that the dogs were graded more on observation from various people than any individual tests. Why don't we do more of this in the human world?

But the part of the book that really helped clear up my thinking about dogs and people was when Jennifer told the story of her mom and her going to a dog shelter to adopt dogs for their program. While there a woman brought in her Brittany spaniel because it had peed on her carpeting and she couldn't deal with the dog anymore. The dog was fearful of what was happening and reacted by biting which led the animal shelter to destroy the dog. Her mom cried in the parking lot and said,

"Why don't people understand that we are responsible for the well-being of living creatures who don't have the ability to care for themselves."..."That precious dog didn't ask to be born. She didn't ask to be sold like a quart of milk to the first person willing to pay the price. How can someone care more for carpeting than for a living, breathing, feeling creature who so obviously loved her? What is that women teaching her children? 'Whatsoever you do unto the least of these, you do also unto me' isn't just a Bible verse." "It is a natural law. Behavior like that woman's makes me afraid for us all. It is a very short step between abusing a dog and abusing a child, between thinking it is acceptable to mistreat an animal and thinking it is acceptable to mistreat other people."

Amen...she just helped tie all my thinking together. The Bible verse stated is one of my favorites and one of the many lessons I know Sam is trying to teach to me. In this journey with Sam he has required me to think more, feel more, understand more, care more and love more. He has challenged my thinking on who I am and how I live in this world. He has changed the way I treat other people, he has taught me to listen more and talk less, to feel, think and live with purpose. That's an amazing accomplishment considering his struggle with the spoken word...but that's something Sam and Buddy have both taught me. To look beyond the spoken word, to sense, to notice, to read body language, to feel, to interpret a look, a body movement, a sound and understand the communication intended.

This book also inspired a PBS program, please watch the video to learn more:

Now the fun part...to get your very own "FREE" copy of this amazing book please leave me a comment and I will have Sam randomly pick the winner. The book will be sent to you from the publisher. ENJOY!!!

Thanks to Alice, she provided the link to watch the entire special online. Go to:

http://www.pbs.org/dogs-eyes/film#

A Very Happy Birthday!

Today I turned 47 years old and I'm at a point in my life where the best gifts are simple gifts. Blessings that I hope to never take for granted. Like the beautiful card my husband gave me to let me know that he still loves me "in that one and only, forever-wonderful kind of way"!

The way Ben made a special trip and came home during the day to wish me a "Happy Birthday".

The beautiful hand made card Danielle gave me to tell me to have a great day!

The sentence Sam constructed on his board while we worked on his program today.

How we all came together to enjoy a wonderful steak dinner and discuss our day. And the part of birthdays our entire family enjoys the most...watching Sam sing "Happy Birthday".

How can you not feel blessed when you see how his whole face lights up as he sings? It is a family tradition with Sam that we always sing twice and blow out candles twice usually because the sheer joy that Sam emits when he sings is something you hope your heart holds on to forever. Notice how when he sings he looks at each family member, how his eyes light up and his unconditional love for those gathered around him is there for all to see.

Thanks to everyone who wished me a Happy Birthday. I look forward to a year full of joy, laughter and simple blessings!!

And He Rides AGAIN and AGAIN!!!!!!

A while back, actually last summer, many of you may have remembered this video of Sam learning to ride his bike.

Little did we know that at that time Sam's hip was slowly breaking down as Perthes ran it's course. Last summer while Sam hiked, swam, climbed a mountain and learned to ride his bike the ball of his hip was slowly breaking down and his hip was beginning to pull out of his hip socket. We didn't know...because Sam never expressed pain and it wasn't until he began to limp that we saw any symptom or suggestion that something may be wrong with his hip.

Since that time Sam has undergone surgery to correct his hip dysplasia and to rebuild his hip. He endured a tough surgery, 7 weeks in a body brace and months of rehab to regain his ability to walk and we are currently waiting patiently for the ball of his femur to grow back.

As difficult as this twist in our journey has been...Sam is still resilient and amazing. When he jumped into the pool after getting out of his body brace he not only regained his ability to move but he has since mastered swimming completely on his own up to 20 feet with no flotation devices or assistance. During that time he places his face underwater and comes up to breath at least twice. He has learned to swim underwater and float on his back.

Sam had done hippotherapy, therapy on horse-back, when he was younger to assist with his walking. This week Sam rode a horse again.

I have watched Sam have good days and bad days, relatively pain free days and painful days but none of those can prepare you for Sam's overall drive and persistence. It is still difficult for me to watch Sam limp as he walks and to see his gait so affected by this diagnosis. It is still difficult for me to see Sam struggle with steps and uneven ground. It is still difficult for me to see Sam want to play basketball but be unable to chase the ball or bend each time to pick up the ball. But what really broke my heart was to see him run his hand over his bike and look at it with a longing to jump on, feel the breeze against his face and feel independent. He tried his bike a few times but the seat caused him pain in his hip and he could no longer bring his left knee up high enough to pedal. These are the moments when I hate Perthes.

After doing some research and talking with Sam's doctors I decided to help Sam regain this dream. Perthes often causes a stiffness in the hip and the motion of pedaling is a good exercise to release and strengthen muscles. The difficulty comes in the upper momentum of pedalling, along with bicycle seats being uncomfortable for a hip that has hardware. After talking with the experts at Industrial Bicycles we decided on the EZ Roll Regal.

It is a 3 wheel bike to accommodate Sam's balance issues and make his surgeon feel more comfortable about the chances of him not falling off. It is low enough for Sam to get his leg over the center. It has the perfect seat for Sam's hip hardware. The seat can be moved up and down and tilted. The handlebars are adjustable and the frame has two settings which allows the bike to grow with Sam. We also changed out the pedals to a smaller circumference and added weighted and strapped pedals to assist Sam with the pedaling process. The bike is a 3 speed and has a hand brake and basket in the back to carry important items...in Sam's case that would be food and water, but especially food.

When we went to pick up the bike Sam didn't seem to make much of it. I think he worried that he would have the same issues as his other bike. But then he strapped on his helmet and this is what happened...

For Sam it was freedom, for Mom it was yet another time when Sam made my eyes fill with tears of joy and my heart skipped a beat. Now each day I am thrilled to hear Sam say,

"Mom, my bike."

"I ride."

"Okay?"

I turn to him, smile, remind him to put on his helmet and be careful...and he rides!!!!

It's All or Nothing...That's How We Roll!!!

Sam has often helped me to clarify my perception on life and who I am. I have figured out that we can be an all or nothing kinda family. Let me try to explain.

So Sam has been working on rehabing after hip surgery. He did fine with the wheelchair but when the walker was introduced Sam decided to take a stand (oops bad pun) not literally stand but he made it clear he didn't want to use the walker. Now most people/children would work on standing and then taking a few steps each day, slowly getting used to the new way of walking.

Most people...but not Sam.

When I first showed Sam the walker he proceeded to yell at it, hit it and push it over saying quite clearly, "No, Go Away!" As most of you reading this blog know, I tend to be a bit...okay a lot...sarcastic. With a puzzled look on my face I said to Sam "It's a walker, Sam, it's not like I'm asking you to do a high jump over it, we're just going to practice taking a few steps." Sam proceeded to yell and hit it again which of course caused me to do my funny little walker voice saying "Please don't hit me, I am only here to help you". Which Sam answered with "Be quiet n go away". That's one way to get an almost 5 word sentence out of Sam. I then deducted that possibly Sam was a little sensitive or touchy about the walker and decided to de-sensitize the problem. Now keep in mind I once had the idea to desensitize Sam's overt reaction to band-aids by waiting until he fell asleep and then proceeding to cover him from head to toe in band-aids. I'm not saying my ideas are always well developed, my mind did give me some mental imagery of Sam going into cardiac arrest upon waking and seeing the band-aids and I rationalized that my idea would only lead to further more complex complications. So I eased back and decided I would put the walker in the same room Sam was in and would often chuckle when I would hear him yell at it. Yeah, you know I was tempted to answer for the walker but that would probably only continue to irritate Sam, if it was Ben, I would have been right on it. What did that walker ever do to him anyway?

After a week or so Sam must have made friends with the walker, because one morning while I was getting ready to take my shower (yep, a lot happens around here when Mom takes a shower) I heard a mysterious click/step and filmed this:

So he wouldn't even consider taking a few steps with Mom's help but would be more than happy to venture out on his own on multiple surfaces with no assistance and walking like he's used a walker all his life all the way across the house to get to...of course...food. When there's a will (or in Sam's case...refrigerator) there's a way. No need for instruction he had figured it out and had mastered it.

Now when I stopped to think about this it reminded me very much of Sam's first experience learning to walk. Sam did not walk until after he was 3 years old. He did not really cruise along the furniture, nor did he like to walk holding your hands. He just began to walk one day. It was all or nothing.

Hmmm, Sam learned to ride a bike the same way. As soon as he could pedal he had mastered steering, braking and escaping from the house. All or nothing.

Sam started swimming with his face under water, kicking and with arm movement, coordinating all the areas. All or nothing.

Sam didn't work on playing basketball until he began to make most of his shots. All or nothing.

Here's the kicker, it's not just Sam. It seems to be a family trait or dynamic. How Jeff runs his business, how Ben works and how he approaches school, how I look at working with families or the playground project, how Danielle dreams about her future...all or nothing.

I have come to respect that this is one of many dynamics of our family and it has it's good points and bad. I worry about this strategy for Sam and I also love this strategy for Sam. When Sam approaches a new aspect or concept of schooling he fights it tooth and nail. Sam like Ben wants to know why he needs to know or do that activity. Ben often tells me that he will never use much of what he has learned in school and when I think about Sam that reality hits me even harder. Does it matter if you understand the periodic table of the elements, does it matter if you understand the history of our country, does it matter if you know all of the presidents and when they served, does it matter if you can do algebra and geometry, does it matter if you can read notes of music???? It does if you think about the idea of experiences and the thought process that through experiences a child can develop their personality, likes, dislikes, interests and passion. What I don't like about how schools are currently set up is that they are covering a lot without allowing a child to really jump off and explore their interests, immerse themselves in them and really help them determine their passions and direction. You know...run with the ball. With my children I have always wanted to allow them many different experiences. In my mind the more experiences the more they develop their personalities and interests.

Without the challenges of Sam and Ben my knowledge and interest in special needs children and their families would have never happened. It wasn't where I was headed but I'm glad I got here. As I continue to work with Sam and my other children I need to pay special attention to what makes them do all or nothing. I need to continue to introduce new things but respect their decision to do all or nothing. I need to develop the areas or interests that make them want to jump in and immerse themselves. I see far too many people doing jobs they hate, living in situations they hate or limiting their experiences in the justification of doing what is right or what is expected. I hear people talk about dreams that they believe will never come true...pipe dreams. Why not? When is the last time you dreamed of something you really wanted to do, when was the last time you asked your spouse what their dreams are? If you have a child with special needs, are you allowing yourself to dream about their future or will you determine that future by the lack of your dreams.

All things are possible, if we believe but first we must dream!

Oh Boy...You Have To See It To Believe It!!

Soooooo, yesterday was Sam's first day in the pool at the YMCA with his OT and personal trainer to start his rehab after hip surgery. After seeing his increased movement over the last couple of weeks I was very hopeful that this was going to be a great experience.

But, in true Sam fashion...I don't even know what to say...let me just show you:

We proceeded slowly and cautiously wheeling him into the water and letting him take it all in. His legs quickly began to turn purple so we knew we needed to get him out of the chair. Oh and I quickly realized it was time to go up a size in the swimsuit area. I guess laying in bed for 8 weeks isn't really a great weight loss plan. He didn't earn the name "Big Belly Sam Elly" for nuthin. So we strapped on the belt and the rest is Sam Mayer history.

Once Sam was in that water there was no stopping him. I will equate it to something my mom and dad have often said about the times during winter when they come to watch Sam and I finally leave the house for a bit. "It's like letting a bird out of a cage" and I always answer "I'm free, I'm free".

For a while Sam got to forget that he had hip surgery and he was free. He was swimming with his face under the water, blowing bubbles and kicking...kicking both legs with not a care in the world. His smile was as big as his face and his personality was in full force as he was deciding what they would and wouldn't be doing in the pool that day.

My heart needed this, it was as if God was saying "See, I told you he could do this and it would be okay." Amen and thank you God!!!

This kid has gone through so much in 10 years and yet he proves to me over and over that he is a fighter, he just never gives up. He doesn't let anything keep him down for long.

In the last video Sam is playing some balloon badminton and look at that smile.

He was standing on both feet and walking in the pool. He did have a noticeable limp...but he was walking. Ahhhh, life is good!

After about a half hour Sam finally tuckered out and I told Wendy and Anne it was time to remove the floating body from the pool. We wheeled Sam out, he had done enough. He didn't even protest during his shampoo and shower which showed just how tired he was. I then laid him down on the towels on the changing table, pulled off that suit which is really hard when you are dealing with over 100 lbs. of very tired jello. I covered him with some more towels and wheeled the pool chair out and brought his chair in. During that short period of time he almost fell asleep. I had to call Wendy back in to roll him over and get his underwear and pajama pants back on. There just was no more energy left in Sam, my usual Energizer Bunny looked more like a limp puppy. I finished getting him dressed, heaved him into the wheel chair, put on his jacket and hat and wheeled him to the door to wait for our taxi ride home. Here was our conversation.

Me: "Did you have fun in the pool Sam?"

Sam: "Yes, go home."

Me: "Are you tired, big guy?"

Sam: "Yes, go home, go bed."

Me: "The taxi will be here shortly."

Sam: "Go Taco Bell" (Yep, that's my boy always thinking about food)

Me: "The taxi is taking us home."

Sam: "Go to Florida."

Me: "Sorry Sam, Oprah never called, we're just going home"

....and then the moment that grabbed at my heart once again. He smiled his slow lazy smile and he said.

Sam: "Told you wately"

I knew in my heart he was playing a game I have played with all my children. At random moments I would ask them "Have I told you lately?" And they would answer as I did to Sam.

Me: "I love you!"

He then did his pound it where we hit our fists together and then he pulls back and opens his hand or as Danielle says explodes it.

I watched for the van through my tear filled eyes and thanked God once again for this miracle that is Sam.

As we drove home Sam's head continued to bob up and down, his beautiful blue eyes slowly opening and closing with each bump in the road.

He managed to stay awake for dinner....but really...we are talking about eating and food (something Sam rarely misses). At 8:00 he told me go to bed and I knew his big day was over. He tried to rally a third time but when he finally laid down he was asleep as soon as his head hit the pillow.

Good Night my little warrior...you continue to amaze me!

You Just Have To Love Him!

Soooo, we are over 8 weeks post surgery and although Sam is not mobile, as in walking, we are still having fun. Sam had a little set back when his surgical incision began to look infected, instead we found out he was having a reaction to catgut (I know you're saying what the blazes is catgut??). Well it's time for your surgical lesson of the day. Catgut is a tough cord made from the intestines of certain animals particularly sheep and used for surgical sutures along with strings for violins, tennis rackets and other instruments. So now you know.

It appears that Sam's body doesn't like catgut, go figure, what exactly does Sam's body like....there's the million dollar question. After a few consults it was decided that Sam's incision looks good enough to begin PT/OT in the pool next week. Our Family Support program was wonderful enough to give us some passes for the taxi service and my back thanks them as that saves me from a couple of transfers on each trip. After Sam got out of his brace he didn't really move his left leg and he could not sit up. Now 2 weeks later things have changed....

There is nothing better than playing a little balloon badminton with your favorite sister (we won't remind Danielle that she is his only sister) (love the outfit Danielle, are you aware we live in Wisconsin, you know the frozen tundra)?

Look at that smile and form. Also a shout out of thanks to the Raines family from Fort Worth Texas. They are responsible for Sam sporting the TCU shirt "Go Frogs". Now before all my Wisconsin friends get up in arms....no one sent him a Badger shirt, so no complaining.

As you know...or maybe it's sneaking up on you...Valentines Day is right around the corner. Sam will be exchanging Valentines with his class mates so we had work to do. First a brief consult with Buddy on his thoughts for the coolest Valentines and treats.

Alright got it...then we had to decorate the Valentine box. I like to make sure Sam is able to help with projects soooooo......stickers (NO) tactile issues, cutting (NO) Mom will have to handle that, Valentines is all about hearts so I cut a bunch of hearts out of paper, had Sam apply the glue (not as bad of tactile issues as stickers) I pick my battles, and then let Sam apply them on top of each other, around the corners, over the top edge (you knew he would try it) and if I took a picture of the bottom of the box, yep they are there too. It's his box and I think he did an awesome job.

I added his name so everyone would know it was his box. Kinda funny story, I was cutting the letters and started with the "a" because I had a small piece of paper. Sam looked at it and said "No, Mom", "S", so of course I cut out the "m" next...so who has the more difficult personality??Sam looked at it sighed, shook his head and said "Mom" "S" and then drew one on the table with his finger. I said "Oh, "S" I get it". He said "Yes, Ssssue!" I cut out the "S" and laid them on the box "maS", he said "No" but then tilted his head to the right and looked at the letters from right to left and said "Okay". Yep, he's mine!

So, now it was on to putting the monkey covers on the suckers. Yep, more fine motor work...just don't tell Sam because he thought it was fun and did all 24 without complaining. It was fun to watch him pick a sucker out of the box and then slowly work to open the bottom of the cover and push the sucker in until it was perfect. He was so proud of each one he did and then handed them to me for the ribbon tying. I knew you would enjoy the photos..so here goes.

First the selection of the red or white monkey and the perfect sucker.

Then the opening of the cover. Just a note, it doesn't matter how much oral motor work I have done with Sam's tongue, fine motor work brings it out every time and yes we have told his speech therapists that he would be a great replacement for Gene Simmons from KISS or now better known for the TV show Family Jewels. Love that show!!!

Next we shove that sucker (oops maybe I should have used the word lollipop) in that cover.

Sometimes putting them upright, helps get those suckers (ooops lollipops) in easier.

Then a quick quality check to make sure everything looks perfect.

And finally the hand off to Mom with a smile!!! I told you that you have to love this kid!

Now it was Sam's turn to write his name on each Valentine, stuff the Valentine and cross the name off the list. Now before you get too excited....I should mention we only did 3-4 per night. Planning ahead is crucial with Sam projects.

I think he and Buddy did a great job picking out some fun hamster Valentines!!!!

Sam always had chores before his surgery so I didn't want to have him get out of practice. Now that he can sit up we brought the Flip N Fold, www.flipfold.com out again. For anyone who is tired of laundry...this is for you! Make it fun and have your kids do it.

If towels are your burden, no worries, the Flip n Fold can handle those too!

It's so much fun, let's do one more!!! Sam is available to come to your house and fold your laundry if you live in a warm climate with a pool...hey he's not a low maintenance kind of guy!

And here he is with his stack of laundry folded beautifully. A job well done! Now I know everybody has their own way of folding...honestly...even a Type A personality like me had to adapt and needed to learn to let go. Are the towels folded the way I have been doing them most of my life? No, does it matter in the grand scheme of life....NO. Another life lesson learned, oh and this type of understanding/adjustment applies to husbands helping with household chores too!!! Just trying to keep peace throughout the world. Today the laundry...tomorrow cleaning the whole house while making Mom a gourmet meal. What???? A girl can dream!!!!!

Sam has been working with his homebound teacher 2 hours a day. She is wonderful but in true Sam fashion he is pulling out every behavior in the book hoping one of them will make her go away. She hasn't given up and what I really like is she keeps pushing him and praising him for any effort. In case you haven't read my blog before, my boys are allergic to school, learning and basically showing anyone with an educational degree how smart they actually are. I know...I'm blessed. Anyway, I'm enjoying the 2 free hours a day to make a dinner or clean the house or let's be honest sit and relax!!! I even opened a book the other day. I am living the good life.

Today we skyped Sam into his music class, he loves seeing his class and himself on the computer screen. Here's a short video of them singing "Shake Your Wiggles Out".

Stay tuned because we are hoping next week we see Sam in a vertical position...in the pool...but him becoming comfortable with any amount of weight bearing...priceless!!!

We Interrupt This Road Trip Diary For Some Very Exciting News!!

Sam has learned to ride his bike!!!!

This moment has been more than 4 years in the making. You have to know the whole story to really appreciate what you see in that video. We started with a tricycle like you do with most kids but Sam couldn't pedal, his feet just fell off the pedals and he had no strength to push on them. It was even one of the fancy ones with the push bar in the back. I remember thinking when I bought it that we probably wouldn't have to use that and he would just pedal off into the sunset. That was only a dream.

Someone suggested we try a Big Wheel because they are low to the ground and easier to pedal and Sam could start by pushing himself along with his feet. Sam sat on it but he never went anywhere. He only pushed off with his left side, his strong side and he wasn't strong enough to keep it straight or turn it. Another hope and dream dashed. Another item for the next rummage sale.

By this time Sam was getting bigger and we thought...or maybe dreamed...that what he needed was a two wheel bike with training wheels to better fit his frame. He was stronger and would surely be able to ride a bike now. But again we were wrong and Sam did not want to sit on the bike or even try to pedal. It seemed Sam's low tone and lack of balance became more pronounced with every new bike we tried. Sam quickly outgrew the bike without ever riding it on his own. We passed this bike on to a friend.

We tried the Buddy Bike which is a tandem bike that allows Sam to sit up front, we both pedal and I steer with the handle bars that wrap around to the back. This would help him feel more balanced, I could talk him through it. But...Sam seemed to only be able to pedal backwards and preferred to put his feet on the pegs and have you do all the work. I'm not sure if the heaviness I was feeling was from pedaling for two people or the thought that yet another idea/dream was for naught.

Grandma put Sam on her stationary bike thinking this would be the trick...and again Sam seemed to only pedal backwards. Bringing his right leg forward and up just didn't seem to be in the cards. Grandma worked harder and did hand over hand but without that input Sam still pedaled backwards.

I could have given up. I could have come to the realization that Sam was never going to ride a bike...this was way too much work and each disappointment hurt more and more. But...I couldn't...my heart wouldn't let me. If there is one thing I know about Sam it is that he is a fighter, he has had to be. He has had to fight to hear, to speak, to crawl, to walk, to run, to go up and down stairs, to swim and even to breathe. Those things we take for granted, those things that are not even a challenge to other children with Down syndrome have been a challenge for Sam. I was not going to give up...I will never give up on Sam...I just can't.

I bought an automatic pedaler, one you put your feet in stirrups on the pedals, turn it on and it turns your feet for you. I desperately hoped that this would help make the connection in the brain for him to learn to pedal forward.

I bought a set of fat wheel training wheels and had Jeff install them on now a 20" bike. The first time I put Sam on it, he fell off. I adjusted the seat height and pushed him on the bike so he could get comfortable, he didn't steer even after being verbally cued and drove off the driveway. I showed him how to use the hand brake, he pushed it but at the same time lost control of his steering and once again fell to the ground. I again begin to pray...and a renewed strength picked both he and I up to try again. I decide to take on the helmet issue. Since Sam is falling a lot I really feel he needs to wear his bike helmet and probably some elbow and knee pads but that might hamper his learning how to steer or pedal. The helmet is an issue because Sam has sensory issues regarding the touching of his face or head. He wears his baseball hat because he can hear but helmets along with winter hats, hair cuts and dental appointments are almost more than he can bear. At this point, I know I am doing battle and it is time to figure out who is the stronger opponent. After much yelling on Sam's part and gentle but firm insistence on my part, I get the helmet on his head and get him back on the bike. At this point it is 85 degrees out, for the next 1 1/2 hours I am running from one side of Sam's bike to the other pushing his foot up and over. I am drenched in sweat, my fingernails are broken off and my foot has been run over too many times to count. I'm now yelling "You can do this Sam...I know you can" "Come on push" "Sam push up and over" "COME ON, use your legs". Not knowing if child protection services have been called in by my neighbors or if I can continue this much longer I steer Sam back to our driveway. As he gets to the incline of the driveway and I get to my point of complete exhaustion and defeat Sam's bike begins to drift backwards. He suddenly presses down on the pedal to make it stop.

The "A HA" moment is upon us. He pushes on the pedal and goes forward on his own. He backslides a little again and then pushes harder this time making it over the top. The yelling of just a few moments ago becomes screams of "You got it, you're doing it, GO SAM GO" as tears of joy join the sweat dripping down my face. Sam pedals around the circle in our driveway, but not only does he pedal, he steers and uses the hand brake perfectly. I am sure I have just witnessed a miracle and I thank God for allowing me to be a part of it.

Sam continues to pedal his bike into the garage. His face is dripping with sweat...he takes his helmet off and with a smile from ear to ear he says "We did it Mom". I am again humbled by this very little boy who continues to teach me that "To accomplish great things we must not only act, but also dream; not only plan, but also believe." I am a believer.

Experiencing Life!

Do you know the difference between education and experience? Education is when you read the fine print; experience is what you get when you don't. ~Pete Seeger

As I continue my journey through this life with Sam I run across so many questions???? Some days I can simply overwhelm myself with the "What if's?". Sometimes I paralyze my thoughts, my actions and my dreams with the unknown. When I learned of Sam's diagnosis I went into hyper research mode (my sister-in-law Julie can attest to this). She asked me what she could do I told her to go to Amazon.com and buy the top selling books on Down syndrome.

I spent the first week of Sam's life reading through the books she brought me and staring through tear filled eyes at the little baby in front of me. Before the books came Jeff and I both commented "He doesn't look like he has Down syndrome". But when I opened the books...page after page, photo after photo...I saw Sam. What scared me more was when I read the text, some of the books were encouraging, some were downright scary and part of me just kept believing that they were not talking about my child, they were not talking about my Sam. What I didn't realize is that those books could have never prepared me for the experience and journey that I was about to embark on. I read and read and read and still to this day read everything I can about Down syndrome. But my knowledge, my real experience comes from the day to day stuff...our life with Sam. Although the books were helpful to give me a broad picture of how Down syndrome may affect my child they in no way could define how this child would affect me.

I read in quite a few of the books and of course heard from countless people that children with Down syndrome are gentle, loving and happy. Hmmmm, Sam must have forgot to read that section. Yes, Sam is loving and happy if he's doing what he wants to do or getting his way but Sam is also strong-willed, persistent and can yell "NO" loud enough to be heard in 2 counties. Gentle doesn't quite come to mind when Sam and I are trying to work through math and he is trying to push over the magnetic board or throwing the marbles across the room. Gentle doesn't strike me when he's bopping the dog on the head or hammering on his older brother because he's sitting too close. I'm pretty sure both Bob and Ellen Doman from NACD would agree that Sam had a few behavior issues that didn't appear to be gentle, loving or happy. Sam is Sam...unlike any child I have ever met and unlike any child I read about in all my books on Down syndrome. In the early days Sam wasn't one of those children who watched other children and did the same thing, he struggled to crawl, walk, make sounds and then struggled even more to hear, listen and speak (we still don't have listening down quite yet). Sam had to be shown how to do things other children just picked up on naturally and in some cases, he had to be shown over and over. But I quickly realized that if I took the time to try something new....to help him learn something new...we made the type of progress I had hoped for and he continues to make advances. Life is really all about experiences and opportunity. When Sam's behavior got in the way of my going grocery shopping or taking him to any store for that matter I could have chosen to take the easy way out...to arrange for him to stay home. When Sam acted out in restaurants, we could of chosen to eat at home and skipped eating out. When Sam became bored and threw a tantrum in church we could have decided not to go back and just sleep in on Sunday mornings, God would understand.

But each of those experiences were a chance to introduce something new, to work on an area he struggled with, to help him succeed, to watch him grow. If we limit his experiences we disable him further. Now just as the quote at the beginning of this post states...these experiences for Sam have been both positive and negative, there isn't a clearly defined right and wrong way to help him through an experience...but each time we learn a little bit more. We learn what works for Sam and also what doesn't work, we find things he loves and things he hates. We begin to come up with strategies that work for both Sam and the people who work with him. At the same time we try to respect Sam's choice to like or dislike something...but we also try to keep in mind that there are many things in life we all dislike but still have to do because it is simply a part of life.

There are those days when I wish this was all so much easier. When I wish I didn't have to think or work so hard at it. Today as I watched Sam empty the dishwasher I couldn't help but think that this type of task would have normally taken me 2-3 minutes but Sam was still emptying after 15 minutes and the dishes were on the counter top and not even in the cabinet yet. After that we sorted laundry, another 20 minute task as we noted the colors, who's clothes they were and what type of clothing it was. My mind cycles through all the tasks still to be completed while my heart slows me down to allow Sam to learn and complete another task. The Lord is desperately trying to teach me to be patient, to teach me to be humble, to teach me through these experiences.

Life is the art of drawing without an eraser. ~John Gardner

Each of our lives and the lives of our children are like an empty canvas. It is up to us to determine what our life and their life portrait will look like. Our experiences and what we learn from them shape who we are and what we become. I hope to continue to add a lot of color and depth to Sam's portrait and on those days when the colors become dark and the strokes are thick and heavy I will try to stop, take a moment to reflect and begin again creating a unique, one of a kind, priceless creation that the Lord entrusted to me.

This post brings to mind one of my absolute favorite YouTube videos "Difference is an Artist's Game".

http://www.youtube.com/results?search_query=difference+is+an+artist%27s+game&search_type=&aq=0