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 Conversation With Sam!!

Today when I picked up Sam from his summer recreation program which is sponsored by Balance Inc., a mini miracle occurred.

Let me begin by telling you about the program he is in. We are so fortunate to have a summer recreation program in our area which is sponsored by Balance Inc. Each summer during the month of July, Balance, Inc. provides a summer recreation program for children with developmental disabilities between the age of 5 and 15. This program pairs up each child with volunteers who spend each day going into the community for recreation activities such as swimming, visiting museums, zoos, nature parks and reserves, water parks, and much, much more. The volunteers are primarily high school and college age students who devote 40 to 100 hours during the month to this program. Many students use this as a way to collect community service hours. Each summer more than 30 students volunteer to assist with the 24 children who participate in the program.

Today they went to the Milwaukee County Zoo. Sam loves animals and he loves the zoo. We have often gone as a family each summer but today when Sam climbed into the car as I loaded his wheelchair into the trunk he began to tell Danielle about his day.

Now to most people that's not a big deal because most kids like to talk about what they have done or where they have been but this has always been an area that Sam has struggled with. Normally if Sam went to the zoo, we could ask him:

"Where were you today?" His typical response would be "All done." Instead of listening and replying appropriately he just lets us know that he is done with whatever he was previously doing. We would then often prompt or ask him if he was at the Zoo or a park? Usually Sam picks the last thing you say instead of answering correctly unless the intensity of that situation draws him into the correct answer.

But today when I picked him up his smile was bigger. I remember thinking to myself "Wow, that's a great smile".

But what blew me away was when he opened the door and without any prompting or questions from Danielle proceeded to tell her:

"Danielle, I went zoo." "I saw zebra" "Otters diving (and he laughed)" Danielle asked him what else did you see. He told her "Elephants (and made his elephant noise), chickens an monkeys." Then he said "Danielle, quack, quack as he put his hands in his armpits and flapped like a duck."

Both Danielle and I were speechless. This was appropriate, spontaneous conversation and Sam had started the conversation. My smile was now bigger! Sam's conversations normally encompass what he wants, "I want (fill in the blank with normally a food item)." But today he shared with us his experience, where he went and what he saw. I can't even begin to tell you how amazing that is to me. Normally Sam talks about places he's been by using an experience book, pictures and text about his trip but today...no prompting, no questions, no experience book...just Sam conversing. Prayers are being answered!

Later in the day I asked him "Sam, where did you go today?" He told me, "Zoo, ride train." More new and appropriate information, I almost fell over. Sam rarely listens with intention in order to answer questions and he normally will repeat previous information or tell you what he would like to do but today we were hearing about his day, he was sharing his experiences with us. I went a step further and asked, "What did you eat for lunch today?" I fully expected to hear Taco Bell because that is where Sam would like to eat but not what he ate today. Instead he told me "Carrots and sandwich, peanut butter jelly."

You could have knocked me over with a feather because that is exactly what I had packed in his lunch. After years and years of explaining to people that Sam isn't usually able to express to me where he has been or who he was with or what he did...all of sudden...this event...this experience was crystal clear to him. I thought it was funny how he looked at me after his response with a matter of fact kind of look as I looked back with astonishment and joy.

I have become so accustomed to Sam's typical responses that today's appropriate responses left me in a daze of blissful happiness and amazement.

I'm not sure if it was just this experience that held enough intensity for Sam to bring all the pieces together, and even if that is the case...God just gave me another little glimpse of the possibilities.

Thank you God, thank you Balance Inc. and your wonderful volunteers, thank you Milwaukee County Zoo. Thank you Sam for always keeping me guessing and giving me those little windows of possibility to inspire and push me to never give up. Good night everyone!

Sorting It All Out!

In the last couple of weeks I have had a lot of time for thought and reflection. I was sick, Sam was sick, therapies and school cancelled, home program put on hold and now we seem to be back on track. I think I needed the break to re-focus, re-think and re-energize. The downtime allowed me to weigh in with two other specialists in Perthes. If you read my last post you knew we were feeling a little overwhelmed by what the diagnosis of Perthes has brought into our lives.

I sent Sam's x-rays and spoke to Dr. Shawn C. Standard during his Perthes chat and I sent Sam's x-rays and spoke with Dr. Dror Paley via email....and I think sometimes I just need to hear things presented in different ways a couple times to really understand what is being said. Everything Sam's surgeon said in our last appointment was explained and supported by both doctors. It was good to hear all 3 of them saying essentially the same thing but in different ways and with a little more detail. It helps my mind process what is going on with Sam.

They all felt the surgery was extremely successful and we are now in a monitoring and PT stage. Sam complicates things by not expressing how he is feeling or if he is experiencing pain and his lack of cooperation in PT is also difficult. My understanding is that the surgery did an excellent job of producing good coverage and containment of the femoral head which helps to re-establish the blood supply but the bone will still break down and this is termed the fragmentation stage and it indicates that new blood supply has arrived to the "dead" portion of the bone and this bone is being removed and reabsorbed- new bone will then appear as fluffy areas on the x-ray. I’m also understanding that the growth plate is always affected in AVN of the hip - the affects are minimal when this occurs at an advanced age which is the only advantage of getting Perthes/AVN at an advanced age- how much affect is a wait and see kind of a game and watching the length of the femoral neck. PT is needed to address the stiffness in the hip which is where we may need some help so Sam's pediatrician Dr. Dirk Steinert has suggested a visit to Dr. Klingbeil, a rehab medical doctor which is currently scheduled for May 10^th. I do understand that Sam’s low tone and lax joints may actually benefit him in helping alleviate stiffness.

So what does that all mean???

Sam’s Perthes is in an advanced stage and we still don’t know what the final outcome will be, it is a wait and see process. This isn’t something that is going to be figured out quickly, there are a lot of variables but the other surgeons also demonstrated that there are more options if things don't go as planned. So much depends on how much bone re-growth Sam has and how that bone growth looks. His surgeon and I would have liked to see some white fluffy stuff on the x-ray but it is good to hear that just because we didn’t see it yet doesn’t mean it won’t happen. I was happy to hear that neither of the specialists wanted to jump into anything right now and that waiting and seeing will determine the future path. I also appreciated the extra info. on the fragmentation stage, late age Perthes and the growth plate which is why we will still be watching the femoral neck along with the head/ball. I shared all this communication with Sam’s surgeon so that he understands my communication needs and if/when we run into issues in the future he may reach out to the other two surgeons.

In Sam's world this means the roller coaster of good/bad days continues. On some days Sam is walking independently (kinda a rough looking gait) but he's walking. On other days he's crawling or asking to lay down, some days he uses his walker, some days he uses his wheel chair. But he never says his hip hurts he just modifies his position or activity to accommodate the pain level which means he needs to be in an environment that he can do that. If we medicate Sam it bandaids the pain and Sam will most likely overdue and may cause damage or delay in healing. Being at home works...being in a school environment would be difficult. I can give Sam the freedom to move or change position and I can still work with him...not such an easy process when you think of a public school classroom.

During my next couple of weeks I will talk with the school regarding options for continued involvement, look into hiring someone to work one on one with Sam at home during the summer to give me a break and I will pray that God directs my actions. I am jumping back into his home program and homeschooling and will concentrate my efforts on cognition/speech, learning new things, increasing his auditory world and his auditory processing, hip stretches and as much physical activity as each day allows. This twist in the journey has once again taught me that I am not in control and I need to allow Sam to take the lead. We continue to present Sam with new experiences and in my mind that is the key to our success. We enable him and we don't give up if at first it doesn't go well...we may just have to try again at a later date when he is better able to handle something or reduce time frames or simply try a different approach. We change things a lot and we keep trying but we listen to Sam through his speech and actions because only he can tell us if it works or not...if he's getting it. We work at his pace and not ours, we adapt to each day, each moment. We don't test because our goal is not to frustrate but instead to instill a life long love of learning and communication. We assess through observation and we continue to challenge him just as he continues to challenge us. Raising Sam tests and questions every parenting skill I thought I had. Each morning as I start my day I take a few moments to read a one minute prayer and a few chapters of the Bible. My devotion for today was perfect:

What's Next?

The Lord will fulfill (his purpose) for me; your love, O Lord, endures forever--do not abandon the works of your hands. Psalm 138:8

Don't stop now, Lord. I am finally catching Your vision for my life. It has taken me a while, and I've had to walk through a lot of mistakes, but I am here and ready to receive Your purpose. What would You have me do next? Your patience over the years has shown me that You will not abandon the work You have begun. Lead me to the next step.

When I listen to others or even to my own negative thoughts, I am tempted to quit trying. Your love inspires me to keep going. And each time I move forward, my step is more steady. I am certain You will follow through. And I will follow Your example.

So, what's next?

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

Road Trip Diary - DAYS 8, 9 & 10

Okay, moving right along. On day 8 we chilled, sitting in the sun, singing, dancing and reading books. The dancing is usually with Sam...he hears music and decides it's time to bust a move. Sam is partial to country music, some of my best moments are listening to Sam sing, "It's five o'clock somewhere", "Beer for my horses" or a longtime favorite, "Mr. Mom". You have never really appreciated that song until you hear Sam sing: Pampers melt in a Maytag dryer, Crayons go up one drawer higher, Rewind Barney for the sixteenth time, Breakfast six naps at nine, There's bubble gum in the baby's hair, Sweet potatoes in my lazy chair, Been crazy all day long and it's only Monday Mr.Mom. (Mom tends to get really loud and held for a long time). The rest of the words just sorta slur together with an identifiable word coming out usually at the end. Cracks me up every time. He did start to rock out to Black Eyed Peas "Boom, boom, Pow" and "I got a feeling". So we are expanding his music appreciation.

Brooke and Danielle decide to walk down to the lake and got more than 8 people to honk at them. So much for my "just blend in and don't talk to strangers" speech. My favorite story when they returned was the conversation they had with a family that was biking to Canada. Danielle and Brooke are not sure if they heard that right and would that be possible? Ah, my geographically challenged road trip companions didn't think we were very close to Canada, for some reason they thought Canada was only over by Wisconsin, way up above us. And then you wonder why I rely on a GPS system???

While they were at the lake Sam decided to once again move the rocks in the creek, one of his favorite activities. I kept an eye on him to make sure he didn't decide to slide down the waterfall...you know he was thinking about it. I heard a big splash and Sam started yelling so I looked up from my book to see him sitting in the stream hitting and yelling at a very large rock. My guess...he either lost his footing and hit his touche on the rock or dropped the rock on the back swing. Either way he was now covered in mud and had a little cut on his belly. Time to remove him from the stream and clean him up. Luckily he didn't require a band-aid. Sam is considered medically defensive and honestly applying a band aid to Sam is like "running with the bulls" or "roping a wild calf." Just seeing a band aid will set off every sensory issue he has. Our home program often has us work on Sam's sensory issues through different types of pressure and stimulation. Sometimes it reminds me of those movies or tv shows where they have the person face their worst fear in order to move on and not let it control their lives. I'm guessing I would have to sneak up to Sam's room at night while he sleeps and apply a band aid each night. Once he found it he would promptly remove it, drop it on the floor and try to beat the living daylights out of it. But enough times???....maybe it would work....or maybe I could sneak up and cover him from head to toe with band aids and get it all done in one evening. Okay that might be cruel. I don't want him to have too much shock to his system.

I don't quite remember if it was this day or not that Brooke and I discovered the toy store in Brandon. It had everything you could imagine, really old time toys, new toys and I'm thinking the brand Melissa & Doug comes from the east coast because that was the prominent line. The store also carried Vera Bradley and Carhart. Now I don't know about you but that would be two lines I wouldn't picture together??? Only in Vermont.

This is where we found Brooke's friendship bracelet looms. She became a bracelet making addict and had to have some intervention while we were travelling. By day 8 she had already made 10 bracelets. We picked up some great toys for the next phase of our adventure on the island. We'll discuss those later. Not a real clear picture but this is just a sample of some of Brooke's bracelets.


Had our last campfire, ate pizza for dinner and laughed again at our answers to more questions from "The Ungame".

Day 9 was clean up and preparing to move on to Maine. I got the wonderful job of going to the laundry to get everything washed before we headed to the island. Laundry with the locals!!! I was so happy I did not bring Sam since two of the young boys had quite a vocabulary and consistently cruised the laundromat trying to steal quarters. The town drunk arrived, looking every bit like Ernest from Jeff's favorite show, Andy Griffith. He threw everything into one washer, there was no sorting and dumped in something that looked like dish soap instead of laundry detergent. He told the laundromat woman he would be back later and headed to the nearest bar. While I was there he didn't come back and the laundromat woman transferred his stuff into the dryer and added the cost to obviously an IOU he had there. She told me she hoped he remembered to pick it up this time. I had to put my city and state on the board because they like to track where their patrons come from. It was an experience!

When I got back and handed out laundry, I asked the girls who had a pair of black socks...they both looked at them and said "Eewww, hobo socks". It's funny we found another pair after we got home. I didn't see anything in the washer or dryer, so do they just drop out of a secret compartment??? It will remain a mystery.

On this day we took everyone into Brandon to check out the toy store and a really cool book store...and of course to get ice cream. You don't even want to know how many times we went out for ice cream on this trip...but isn't that what vacation is all about??? The book store had one of those old wooden floors that creaked with every step you took. Of course, Sam being a boy, and Sam being Sam found the loudest creaking area and would just sway back and forth to see how loud he could make it creak. It's a boy thing. We loved this book store with its coffee shop on the second floor. Really cute!! In the toy store Sam picked up a jacked up school bus, all those toys and he chooses a school bus...I hope that's a sign for this coming week when he add his afternoons in the public school to his homeschooling in the morning schedule. Fingers are crossed, prayers are being said!!

We decided to have dinner at Cafe Provence to commemorate Jeff and my 17th wedding anniversary. We called him from the Cafe and promised him we were thinking of him as we ate a delicious steak sandwich. Sam loved it too just without the bun and an extra serving of vegetables.

We went back to the cabin and finished cleaning and repacking the van. I had to encourage Brooke and Danielle by consistently throwing things at them as they tried to lay down and ignore the packing. Danielle used the excuse that she had to finish reading her book because it belonged to the cabin. In my world, you don't really fight with a child that wants to read because I do enough of that with two that are not as thrilled about reading. She finished her book, we finished packing everything except our clothes for the next day and the food and went to bed.

On day 10 we finish packing up the van, program Pamela (our GPS) for Maine and say goodbye to our "Falling Waters" cabin at 9:00 a.m. I will never forget this place and suggest that you check it out for your next vacation.

Unbelievably we find our island fairly quickly. We are on a dead end road and there is a little turn around parking area that we can park the van. We find our canoe locked on a cable to the tree and in the lock box is the key for the cable and the keys to the cabin. After finding our paperwork we try the combination and it opens right away....we must be at the right place. The island is only a short paddle away....but it doesn't matter...it's the adventure of it all. How many people get to have an island to themselves? Of course there is also the adventure of no electricity or running water...this is going to be fun!! To check out this property on line go to http://www.homeaway.com/, Property 229387.

Brooke and Danielle paddle Sam and I out to the island. We hook up to our pier and go explore. The girls will have to paddle back and forth two more times to bring all our supplies.


It's a cute little cabin, it looks like it was a one room and then they added the front room and deck and the bedroom in the back.




This is the front room where Danielle slept on the couch. I loved this little room with it's table to eat at surrounded by sliding doors which seemed to invite the natural surroundings in. Very peaceful.



Sam of course checks out every one's bed so here he and Danielle share a snuggle.


This next picture is of the kitchen and Brooke's sleeping accommodations. Brooke referred to her bedroom as the dungeon. It wasn't as brightly lit as the other two rooms, this was I think, the original one room cabin. Very old windows, the construction and the painted floor and walls look original. I am standing by the propane cook top. This was great, very simple to use and we could cook pretty much anything that you would normally cook on a cook top. There was no oven so the grill would have to suffice. We never even got the grill out, we became creative with the cook top and cooked simple meals. Next to the cook top is our main water supply. Yep that blue container with the spout is as close as we came to running water. On the floor below the window is the propane refrigerator. This was also a great addition otherwise you had to get ice for the other cooler every day. The propane refrigerator was big enough to hold (8) 1 liter bottles. This trip required us to think while we shopped so we could fit everything in...all part of the adventure. All the plates, pots and pans were provided but you were supposed to wash them in the lake. Due to Sam's immune system issues we bought our water bottles and used the drinking water supplied to wash the dishes. Okay, sooo washing dishes without running water. I'm just going to tell you it's really gross and very time consuming. We used paper plates when possible but some things like our chicken Alfredo just did better on real plates. When we came to the cabin I thought the lack of electricity would bother me the most....oohh nnnooo....it's the lack of running water.


The next picture is the main bedroom where Sam and I slept. It was a great little room with lots of windows and a sliding glass screen door. You had to bring your own linens and towels for this part of the adventure so that was all part of the packing. Okay you know I'm sleeping in a cabin because I'm not really much of a camper but my only issue with this bedroom was at night it seemed like spiders appeared out of nowhere. I am freaked out by spiders. I guess I was facing my greatest fear!!!


I know you are all wondering, where is the bathroom??? Well in the next photo you see the shed that was located off the back door of the cabin. In the front part of the shed was a typical shed set up. You then opened another door and in the back of the shed was the compost toilet.

Yep, that's the throne and it was really like a throne because you had to step up to get on it. Now honestly it was a cute little bathroom complete with pictures, a mirror, hand sanitizer, compostable toilet paper and some lanterns because remember...no power and of course instructions on how to utilize the compost toilet. Okay, sssooo we are introducing Sam to a new type of toilet and you have to step up to get on it. Oh, this was going to be fun...not. This was a little bit of a challenge. With his balance issues he was unsteady on the tiny step, we won't even go into the aim issues but let me assure you that your aim is way off when your balance is questionable. That was just the first part, then I had to get him to sit on it to, well you know, #2. Again the balance issues come into play and also the fact that it doesn't look quite right to him. I mean it looked like a regular toilet if you could get past the lack of a toilet bowl, water and a very dark hole. If I'm being perfectly honest with you. I myself had to take a flashlight and look in the hole each time I went for fear that something alive was in there and would bite me. Needless to say, Sam a usually very regular kid but he chose to hold off #2 for the first couple days we were there. He finally had no choice and had to climb and straddle. Another fear defeated...by sheer necessity of course.

Now you are probably wondering about the girls and their reaction to the compost toilet. After reading the instructions they automatically assigned me the job of maintaining the toilet. Which meant that every couple of days I had to pull out the handle on the front of the toilet and turn the barrel six times to get all that composting action going. They just could not fathom stirring poo. I mean it's not like you touched anything...it's all very sanitary or as sanitary as a compost toilet can get. The girls decided the bathroom was a tag team type of event, especially if either required the #2. They had wonderful cousinly bonding time as they went to the toilet together, one staying in the lounge area while the other, well you know. All I heard was constant laughter, so it really couldn't have been that bad. In Brooke's notes she says "We never had more fun pooing in our lives!" I guess that made the whole adventure worthwhile in a strange kinda way???

Again, Sam finds his favorite place to chill. He loved to sit on the deck and listen to the water hit the shore of the island.
The deck was a great little place to read a book, listen to the loons and osprey ( I will tell you all kinds of stories about that later) or just chill out. Of course with no electricity, there was no Ipod dock but thankfully there was a crank and battery operated radio. Funny story, we thought it only worked by cranking it and I spent most of a day getting some exercise until we found out that moving the switch one point further put it on battery. Oooohhh, that was convenient.

At night the girls would sit outside and work on their bracelets and talk and laugh...especially laugh. They had adapted beautifully to their new surroundings.


I, like Sam, would sit out and listen to the water gently hit the shore and watch the sunset over the lake. It was peaceful and relaxing.

Stay tuned for Days 11 & 12....swimming, driving through the Maine countryside, creative shopping and a visit to one of the most beautiful National Parks I have ever seen, thanks to Sammy.