Road Trip Day 3 - Climbing A Mountain...Literally and Figuratively

Day 3 will be a multi-day post because we have so much cool stuff to show you and talk about. We got up on our third day and had breakfast to give us the strength for the hike of a lifetime.

Most people who know me don't realize the battle that goes on inside my head when it comes to Sam and his multiple medical issues. Outwardly I appear calm, creative and in control...that is my goal...but the process of getting there is one that can inspire me or overwhelm me, push me to new heights or make me struggle to stay out of the depths...it really just depends on the day. Everyday I choose to love Sam for just being Sam but everyday my emotions are a whirl of thoughts of am I doing enough, am I doing too much, what else can I do, what therapies, social circumstances, outside help, further medical intervention should I look at to help Sam. These emotions are usually kept at bay with prayer and letting Sam lead the way...but that's on a good day. Sam's NACD program gives me priorities which help with the focus, his therapists work on areas we discuss and I only work with people that take the time to really get to know Sam, to understand his wants, needs, communication and behavior. On a bad day when Sam has a pain episode severe enough to make him cry I struggle between anger at what is causing my child to hurt, frustration at not knowing if we are doing everything possible to help Sam and pain, gut-wrenching pain when I know my child hurts and I can't make it go away. But these hurts are not just because of physical issues. These same emotions hit me when Sam struggles at learning, when he tries to communicate with another child or person and they turn away and decide he's not worth the effort, when I see Sam wanting something...a friend, to physically do what other kids do, to just do what I take for granted each day and never think twice about. In Sam's short life he has struggled to do the simplest of human tasks...Sam has struggled to breathe, to walk, to talk, to communicate, to think, to process, to learn but he has never struggled to love unconditionally, to inspire me with his attitude and persistence, to test me to be the best person, the best Mom I can be. It is then up to me...if I can meet the challenge.

After Sam's pain episode, I gave the worry and hurt to God. I got angry enough to make a conscience effort that no matter what...Sam will see a waterfall and he will continue to enjoy his road trips however we have to make that happen. I don't want to take anything more away. The pain...well...it was still in Sam's hip and my heart and soon to be in other parts of my body...but as Mother Theresa says: "I have found the paradox that if you love until it hurts, there can be no more hurt, only more love." I was about to prove her theory.

We entered the beautiful Smoky Mountain National Park and we were on a mission. During my research I had purchased a great book "Scavenger Hike Adventures" by Kat and John LaFevre. This book details each trail and provides nature scavenger hikes for the trails within the park. This is a great book for homeschoolers or anyone who wants to get even more out of their hike and help educate along the way. The book details why it's a great trail, where the trail is, about the trail, how long is the hike and things to hunt for. The book described the beautiful 85 foot double waterfall which is the prize at the end of the hike. The trail was paved in the 1960's and is considered easily accessible for strollers and "do-able" for wheelchairs. The trail is 1.3 miles to the waterfall and is considered a gradual ascent of only 300 feet in a mile. That all sounded as they said "doable" and the girls planned to take on another trail after we finished this one.

The book gives great information on the local plants, trees and animal habitats. We packed our backpack with water and granola bars and headed to the trail. Parking was at a premium because everyone seemed to have the same idea we did. We started up the trail and quickly realized that a gradual ascent of only 300 feet in a mile sounds great in a book but is very different when you are walking it and pushing a wheelchair...but we were determined. The trail had many potholes and patches that were not so easy to navigate with a wheelchair and we found ourselves not only pushing but lifting Sam over the tough spots.

Brooke and Danielle liked to get a running start up the steeper areas of the trail. Yep, I followed behind taking pictures...of course.

Sam would yell to Brooke, "Run, Brooke, Run!" and then he would make panting noises which Brooke would then reply, "Yep, I bet this is really tiring you out Sam."

Now it was Danielle's turn to run and push. I myself liked the slow walk and push idea, but I respected their enthusiasm and energy.

There were great places to take a break and have some water, so many cool rock structures, streams, roots, trees, plants and wildlife. We all enjoyed the rest stops.

Sam liked to look up and see the tall green trees and the blue sky and clouds peeking through!

So much beauty to admire and inspire!!

Mom's turn to push and give the girls a break.

Not the most flattering pictures of my backside, (note to self, continue exercise and weight loss program while homeschooling this year!!)

We tried to enjoy the beauty around us while catching our breath from the upward climb.

We could hear the falls and Sam began to say "Almost there, almost there." What I can't really put into words is the look on Sam's face when we got to the top of the mountain and he got to hear and see the waterfall. This picture almost captures it.

His eyes were kind of glossy and although he couldn't express it in words, his face let us all know how much he appreciated the effort it took to get him there.

The bridge led to the center point of the two falls. It was slippery on the rocks so we didn't attempt to go into the waterfall as others did. Just seeing it and hearing it was enough for Sam.

The waterfall was gorgeous and the sound was comforting.

The girls decided to continue their hike down the side of the waterfall to get pictures of the lower falls. Sam had fun yelling to them to be careful and he just kept smiling.

Brooke got some great pictures while at the bottom of the falls.

As I sat and watched Sam, I thanked God for the beauty of his creations, for this wonderful little boy that takes me to places I may have otherwise missed. I am grateful for him pushing me to go further than my comfort level, challenging my thoughts and inspiring me to always think of the possibilities instead of the limitations.

The girls enjoyed the challenge of hiking further down the waterfall and they felt the same sense of accomplishment and joy that Sam and I were experiencing.

My words don't always express the sheer beauty of the area, so I will borrow some words from some famous people.

"Climb the mountains and get their good tidings. Nature's peace will flow into you as sunshine flows into trees. The winds will blow their freshness into you, and the storms their energy, while cares will drop off like falling leaves."
- John Muir

"Above all do not lose your desire to walk. Everyday I walk myself into a state of well being and walk away from every illness. I have walked myself into my best thoughts and I know of no thought so burdensome that one cannot walk away from it. But by sitting still, and the more one sits still, the closer one comes to feeling ill ... if one keeps on walking everything will be alright."
- Soren Kierkegaard.

"When man ventures into the wilderness, climbs the ridges, and sleeps in the forest, he comes in close communion with his Creator. When man pits himself against the mountain, he taps inner springs of his strength. He comes to know himself."
- William O. Douglas

"What a joy it is to feel the soft, springy earth under my feet once more, to follow grassy roads that lead to ferny brooks where I can bathe my fingers in a cataract of rippling notes, or to clamber over a stone wall into green fields that tumble and roll and climb in riotous gladness!"
- Helen Keller

"Those who contemplate the beauty of the earth find resources of strength that will endure as long as life lasts."
- Rachel Carson

"Do not feed children on a maudlin sentimentalism or dogmatic religion; give them nature. Let their souls drink in all that is pure and sweet. Rear them, if possible, amid pleasant surroundings ... Let nature teach them the lessons of good and proper living, combined with an abundance of well-balanced nourishment. Those children will grow to be the best men and women. Put the best in them by contact with the best outside. They will absorb it as a plant absorbs the sunshine and the dew."
- Luther Burbank

"Wilderness has been characterized as barren and unproductive; little can be grown in its sand and rock. But the crops of wilderness have always been its spiritual values -- silence and solitude, a sense of awe and gratitude -- able to be harvested by any traveler who visits."
- David Douglas

" ..... to be whole and harmonious, man must also know the music of the beaches and the woods. He must find the thing of which he is only an infinitesimal part and nurture it and love it, if he is to live."
William O. Douglas

It struck me as sad that people felt they had to leave their mark on nature's perfect picture.

We got together for a group photo before we attempted the journey back down the mountain.

I was so proud of Brooke and Danielle for taking on this challenge with me. Here are two teenagers that without question understood my want and desire to allow Sam the opportunity to see the waterfall. We knew that the path was not going to be easy but then we only needed to look at Sam for our inspiration. We persisted and we overcame the obstacles and never for a moment felt like giving up. Another life lesson taught by a little boy that struggles with the spoken word but never fails to teach us so much.

In the next post I will include more pictures of our journey down the mountain and a trip to an amazing aquarium. 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#

Road Trip Diary - DAY 3

On day 3 we decided to take the challenge and climb to the top of mountain to get to Eagle Rock. All four of us started the journey together.

As Danielle and Brooke will say this was "legit" hiking. The trail was steep at points and required you to grab on to trees or roots to help pull yourself up. Because this is the deep woods an enormous amount of bug spray is also required. Because Sam's skin is sensitive we used California Baby Bug Repellent Spray. LOVE IT!!! It is a citronella, lemon grass and cedar essential oil blend. We carried it with us and reapplied often. The scent is nice and best of all, Sam's skin doesn't react to it and it kept the bugs off of us.

Due to Sam's respiratory issues and a very bad respiratory episode in 2005 when we almost lost Sam it has taken time and work to rebuild his stamina. After he was released from the ICU Sam could only walk for brief periods of time before he would get tired and have to sit down. We started exercising by just trying to walk to the end of our driveway, at first Sam could only make it halfway. Over the next year we were able to get him to walk a 1/2 mile before he had to sit and rest. This trip showed me how far he has come, Sam hiked more than half way up the mountain. We got to a point where safety became an issue since Sam has balance issues and some right side weakness and although he would have kept going up...and wanted to...which amazed me, I wasn't sure how I was safely going to get him back down. Even as far as he did climb, coming back down was a challenge. Sam stayed behind me and used me to push off of and keep himself stable and I leaned back holding his hands to keep us from falling forward. It was a challenge but to see him smile so big and say "We did it" when we came down was worth it. Next time he'll make it to the top.

Brooke and Danielle continued the climb and made a really cute video of their journey back down. Watch out you might get a little dizzy watching it.

When they got to the top they made a few phone calls letting everyone know back home that they had made it. They ate, took pictures and just sat in awe of the view. They made a video for me in case I didn't make it to the top...but I did the next day.

After making their way down from the mountain, they were a little hot and sticky and of course covered in bug spray so they decided to grab their swimsuits and go explore the water fall.

While all this was happening Sam slipped into his swim suit and swim shoes and enjoyed throwing rocks in the mountain stream. I kept an eye on Sam and read a wonderful book given to me by a dear friend about a boy with Down syndrome called Shades of Morning by Marlo Schalesky. I really liked the book, wished it had a different ending but it was a great story. Another good book I've just finished is Angel Song by Sheila Walsh & Kathryn Cushman. Since my dream some day is to write a fiction book with a Down syndrome character I am trying to read as many that have been published as I can. Let me know if you have any favorites???

Later that night we grilled hot dogs and made smores over the fire and we laughed and laughed. We played "The Ungame", it is a great conversational game and playing with two teenagers is just a hoot!! We played the family version and we all had to answer questions like "What makes you feel proud", "Who do you think is the most generous member of your family?" "Tell about something you'd like to accomplish in the coming year." "How do you think the person across from you would describe you to someone else?"

Brooke got hooked on making bracelets...okay honestly she became an addict and at one point we had to put her in bracelet rehab. She was not allowed to touch any bracelet making materials for 15 minutes, she failed and got another 10 minutes tacked on. It all started with the bracelet making kit they found in the cabin and then one day as we were checking out a really cool toy store in Brandon we found the ultimate bracelet making kit that included 2 different foam discs that made four different styles of bracelets. In no time Danielle, Brooke and I were all hooked on the amazing bracelet making discs. I wanted to meet the person who created these because they really do work well and create very unique bracelets and I couldn't fathom how long it took them to figure this out. If you have a child who is not so much into reading on vacation, kits like these can be a life saver.

The girls ended the night by finishing off the carton of ice cream we just bought the day before and yes, they were the only ones eating the ice cream. Ahhh to be a teen again and be able to eat like that....not me, not now or probably ever again.

Our road trips also started another tradition...watching horror movies at night. Tonights viewing was Paranormal Entity. On last year's road trip to Utah we all watched a very scary movie our first night there, it was Jeepers Creepers 2. This movie was about a flesh eating winged creature that looked partially human and went on a 27 day eating spree...freaky movie. After the movie was over and the girls were getting ready for bed...I just couldn't resist. I took Sam's little action figures and lined them up outside their bedroom door and then I scratched along their door like the creature in the movie did. I think they screamed loud enough to be heard in the next county. They opened their door and screamed again when they saw the little action figures...I meanwhile was rolling on the kitchen floor laughing. They waited until this trip to get me back. This night they snuck up on me after making it sound like they were still in the cabin and scratched on my window. Okay they got me...but Brooke and Danielle...there's always next year....BEWARE!

The Story of Floppy Cat, and a Personal Reflection

I was asked to read and review a book written by Kari Kay which is titled Floppy Cat. I was told:

I am writing to touch base with you about a new book that I think would be great content for your blog. Floppy Cat is a new children's book by author Kari Kay based on a real cat born with a lack of balance control. Floppy Cat wonders what it would be like to play normally like the other animals, but as the story progresses, he learns to accept himself for his own special gifts and to always maintain a positive attitude. This unique book is a great way for parents to teach children the value of self-confidence and acceptance.

Hmmm, I'm always a little leery with any comparison of animals and children. But after viewing the website http://www.floppycat.com/ and viewing the video of the real life Floppy Cat I became intrigued and agreed to read it.

What I wasn't prepared for was how much I would love this book. The drawings are adorable but what really struck me was the forward to the book and the story itself. The forward reads:

Thanks to those who saw the Floppy Cat in me.

Floppy cat taught me so many life lessons. The most important of which, is that we all deal with challenges. We can choose to run from those challenges and play it safe, or we can boldly step into them to learn and grow. Floppy lived his life with a positive, never give up attitude, always looking for the good in every situation. My hope is that after reading this book, you and your child will find the Floppy Cat inside of you!

Kari Kay

That alone sums up my journey with Sam. Sam has many challenges and I often refer to the fact that at any point he or I, or both of us, could have chosen to curl up in a little ball, to believe the prognosis we were given, to give up and let life pass us by. But instead we embrace each and every day, learning and growing, looking for the good in every situation and never ever giving up. I am happy to say that we have found the Floppy Cat in us.

As I read through the story I couldn't help but pick out words and phrases that I could relate to Sam and our journey together:

---always be seen with a smile on his face (that's my Sam)

---his own special gift (I view Sam's diagnosis as this)

---all cats are unique in their own special way (Sam isn't disabled or handicapped, he's unique)

---always moved forward and was willing to learn (our daily goal)

Life and raising a child with special needs is really all about perspective. We can choose to get caught up in the labels and the challenges associated with those labels....or....we can move past all that. We can see our child as unique, not disabled, not handicapped but instead themselves. Sam is Sam, perfectly unique with an array of strengths and weaknesses...really just like you and me....just different strengths and weaknesses.

In the story, Floppy Cat locates a hat with a very special message inside which inspires him to go even further on his journey.

My absolute favorite line:

I can be whatever I want to be, as long as I always believe in me!

Isn't that really what we want to convey to all of our children?? When I think about my life with Sam...I began with a lot of doubts and worry, did God pick the right parent, can I do everything Sam is going to need me to do, can I see past Sam's diagnosis and love and enjoy the little boy that he is. I had to believe in me and my abilities so that I could then believe in Sam and help him to believe in himself.

This is a wonderful book about overcoming obstacles, believing in yourself which in turn will help you to reach your dreams. I highly recommend this book for any parent who is trying to explain to their child that they are not different, but instead, they are unique. Their challenges do not define who they are or what they will be but instead it is how they view themselves and how they overcome those challenges that will make them the person they will become.

If you are interested in getting your own copy of Floppy Cat, go to Kari's website http://www.floppycat.com/ and you can purchase it for $12.71. But most of all...find the Floppy Cat in you!