Putting Things Into Perspective!!

Be prepared...this is going to be a post that will weave in and out of my thoughts, dreams and fears as I try to put things into perspective.  I have always been an optimistic person...or have I????  I have always held strong to my dreams and aspirations for Sam...or have I???  I have always placed my trust in God...or do I???

Here's the thing...on any given day I have good intentions.  I know what I should be doing and having been brought up as a Missouri Synod Lutheran I also know what God expects of me. Being the mom of a child with special needs I often hear "God only gives special children to special parents", "God never gives you more than you can handle", "God knew what he was doing when he gave you Sam"...to all of that I say "Poppycock".

God gives special children to average parents and then with His help and by His grace we try to raise them. And if I am being honest I succeed and fail just like any other parent...the difference is I have more chances and challenges each day with Sam to see just what I am going to choose to do...succeed or fail.  As parents we all have times when our children push our buttons or challenge us...the difference is Sam pushes harder, challenges me more and the real test is how I react.

Danielle might ask me a question and she will wait patiently for an answer...Ben would ask me a question louder and with more intensity and demand an answer...Sam would ask me a question, not wait for an answer, ask again and again and again with absolutely no understanding of non verbal cues, being patient, or actively listening for the answer.  Each of my children are so very different and each requires a different level of patience, compassion and understanding on my part.

Today was a failure!  I wanted to work with Sam but Sam did not want to work with me. Instead of being patient and positive I found myself getting frustrated, somewhat angry and choosing to give up.  We started our day with some stretches and Sam yelled "NO" during most of this time. Then I brought out the walker that he promptly pushed over several times before getting up to walk across the room to his recliner all the time yelling at me.  I brought out his reading which he struggled through requiring more intervention from me than is normally needed.  His math facts he decided to hit the wrong answers to hear the sound it makes further depleting my "we can do this" attitude. No matter what I tried it was met with resistance. I raised my voice at one point which just made Sam even less attentive and when he kept turning off his Ipad educational app I finally just walked away. I gave up.

Many of you might be saying "He had a bad day"..."He's going through a lot, give him a break"..."It is Easter break, what's the big deal".  Well, here's the thing...that is often how every day starts with Sam...the difference was my reaction.  Sam is stubborn...Sam is difficult...Sam likes to have his way and through these actions (as difficult as they may be) Sam is desperately trying to teach me patience, resilience, perseverance, grace, humility, compassion and challenging me to think outside the box, to try new ways, to press on, to press through...to succeed...and today I chose to give up, to fail.  Failing is easier, he gets Netflix, I read a book and he's happy...kinda.  I meanwhile wallow in my failure...my mind stretches to all the things he will never be able to do, how I've failed him, how someone else...really anyone else could do a better job with him.

Taking a day off is fine...but more importantly picking myself up by my bootstraps, praying for additional strength and resilience is really what I need to do.  When I was told Sam would never walk or talk because of his multiple diagnosis of Down syndrome and brain injury I could have gone with that, believed it, lived it and Sam would have probably never walked or talked but I chose not to believe, I set my expectations higher and Sam walked and talked, later than most but he got there.  Teaching reading to a child with Down syndrome can be challenging, now add brain injury, apraxia, dyslexia and aphasia...but even with all of that Sam can read. Our new challenge...Perthes Disease...has required 2 hip surgeries with another one coming in May and Perthes has taken most of Sam's mobility away.  As challenging as the external fixator has been for Sam's weak immune system and as much as I hate pin care the chance of saving Sam's hip and allowing him to walk again gave me the courage to get through.

Each of these challenges presented me with a choice to give up or to forge ahead. Each of these challenges and how I chose to forge ahead (NACD, homeschooling, out of state surgery) had it's supporters and it's critics.

Here's the thing...I'm Sam's mom and I take that role very seriously...some would say I'm a wee bit of a control freak.  Each of my children has presented me with parenting challenges and unfortunately none of them came with an owner's manual so I have allowed each of them to guide me on their journey along with a lot of prayer and request for guidance from God.  Ben has taken me on a rollercoaster ride of ADHD, Dyslexia and learning disabilities. He single handily changed my viewpoint on schools and education. Through Ben I learned the importance of letting a child pursue their interests, building on their abilities while working on their challenges. Ben began the development of my ability to be patient, persevere, to think outside the box, to understand how each of us is unique and to both cherish and challenge the differences.  Danielle built my reserve of compassion, my wit and humor. She gave me back my sanity. She made me laugh more, listen more and she will forever be "my little ray of sunshine". She is like a mirror image and reflects both my strengths and my weaknesses. And Sam...Sam is the child that demands a whole different level of parenting. With Sam I have had to become a teacher, PT, OT, Speech therapist, nurse, caretaker, friend, cheerleader, pulmonary therapist, social director, researcher, dietitian, catechism teacher and behavioral therapist.

Sam demands resilience!  When I raise my voice Sam shuts down.  When I show frustration Sam becomes equally frustrated.  When I am excited by something Sam has done he not only reflects my excitement but he radiates pride for me and with me. Each and every challenge Sam has encountered he does with grace. He adapts, he withstands, he rebuilds and he overcomes.  To effectively work with Sam I have to be at the top of my game.  I would love to say I can do that every day but I would be lying.  So this is where my trusting in God has to come in.  I have been reading the Book of Proverbs to Sam because it is full of wisdom.  It tells me the type of person God would like me to be and the actions I should do but I often fall short and being both human and a sinner and knowing that it is not my actions alone that will help me with Sam I pray and I trust in God. I can't heal Sam's hip...but I have faith that God can and will if that is his intended plan.

Yep, today I failed but tomorrow is another day and another chance to pick myself up and try to be at the top of my game.  

I know that life is not without it's difficulties and that with every challenge there are still blessings to be found.  I hope and pray that I continue to have the strength and resilience to wake up each day with the wherewithal to get through and to do it to the best of my ability and on those days that I don't...I trust in God to take over.  I have so many hopes and dreams for Sam, none of them are small or easy but together we can chip away at the tasks at hand keeping our focus on creating a life for Sam where he will be healthy and happy. I know that the dreams I have for Sam will change and develop as he guides me along and makes them his own and I hope that I continue to see the possibilities...to keep an open mind...to think outside the box and to enjoy the adventure. 

Tomorrow I will strive to stay positive, to encourage and not discourage, to emit a "can do" attitude, to look in Sam's eyes and let him know that I believe in him, have faith in him and that together we can learn anything.  I will strive to listen more and talk less, to participate and not dictate, to be calm, patient, attentive and fun. I will keep our windows of learning short and end each area on a positive to ensure that Sam feels successful and willing to continue. I will be resilient!!

Strength From Within

We are 4 weeks after surgery.  This was when I originally had thought we would be coming home from Baltimore but am so very thankful that as of tomorrow we will be home 2 weeks already.  Sam is getting stronger and stronger each day and he is adjusting to his new reality with the external fixator and all that it entails.  I want to take a moment and explain what Sam's day to day reality is like.

When Sam first came home he was able to stand for only a brief moment but long enough to allow a transfer from one point to another with assistance.  He required assistance to go from sitting to standing and he had little to no movement in his left leg.  After 1 week I taped him working on his standing and his exercises.

It was amazing to see the improvement in his standing and his movement.  My favorite part is the smile on his face when we finally count to 10 while he is standing.  This little boy is working very hard attempting to make his left side move while strengthening his right side which was originally the side that was weaker due to his brain injury.  My need to assist Sam with his movement caused my back to seize up and Sam and I both had to rest for a couple of days.  But what you see in the video is only a small part of our day.

So what does Sam's day look like?  Sam is usually beginning to wake around 6:00-6:30 because he has gone all night without pain medication and the pain begins to wake him up so I get his pain and thyroid medication.  Sometimes he can fall back asleep and other days he's ready to get up for the day.  He uses a urinal while in bed to empty his bladder.  I take out his hip extension bar and help him to transfer from his bed to the wheelchair.  I then wheel him into the living room and help him transfer from the wheelchair to the recliner.  After getting his pillow situated for his leg, covering him with his blanket and giving him the control for the Wii so he can watch Netflix I head to the shower.  After a quick shower I'm ready to make Sam his gluten free, healthy breakfast and I record any and all medications given on an Excel spreadsheet.  Sam is able to have pain medication (oxycodone) every 4 hours or as needed, Valium for muscle spasms as needed or before PT, stool softners to assist with the constipation the first 2 medications cause and then we added an antibiotic for some possible pin site infections that had to be given every 6 hours for 10 days.  Add to this his 17 different supplements (each with varying daily quantities), exercise/PT and you begin to see why I have everything on a spreadsheet...I just can't keep that much information straight on a daily basis.  Before Sam eats his breakfast I give him a scoop of coconut kefir and a scoop of fermented vegetables to help with his digestive tract and immune system.  I mix a calcium supplement into his orange juice and I give him 9 drops of Vitamin D. After breakfast I get the first batch of supplements and a stool softner into Sam with apple sauce. When we have finished with the vitamins we do our first set of stretches and sit/stand with the walker.

I give Sam a short break and time to enjoy Netflix as I get his homeschooling activities together.  Due to Sam's pain issues and his pain medication we are simply reviewing things Sam already knows.  You learn to pick your battles and I don't think anyone is really receptive to learning new things when there is pain or effects from medication involved.  Here is Sam working on his reading/comprehension with something he really likes to do and then an attempt to do some math.  Sam struggles with math day to day, we work on math problems and bringing math into his day to day activities as much as possible and yet there are days like the one on this video where he either chooses not to attend or just tries to guess his way through. When I see that struggle I assist and go into more of an input mode than an extraction of information mode. I also like to show both good and bad homeschooling scenarios with Sam...I don't want anyone to think that Sam is really, really easy to work with or that he never fights or refuses to cooperate...it just depends on the day and his mindset. When I first started homeschooling, every day was a challenge but when Sam realized that I wasn't going to give up on him he decided to cooperate...occasionally.

In between our academic areas we throw in some physical activities to keep getting him stronger:  balloon tennis, throwing a weighted ball into a basket, throwing/catching with suction cup paddles, opening and closing arms to move a ball on string back/forth, auditory game of choosing the right item to throw into the garbage can, nerf target practice, Wii work out game.... A couple of times a day I try to throw in some type of respiratory exercise blowing or breathing into an acapella. Even on Netflix breaks I try to work on Sam's conversational speech and turn taking.  Then he transfers back to the wheelchair, transfers back to bed and I put the extension bar in for a hour while he plays with his Ipad or works on a puzzle.  When his hour is over I remove the bar, transfer him back to the wheelchair, transfer him back to the recliner and head to the kitchen to get lunch ready.  After lunch if pain medication is needed I give it with his thyroid medication and stool softner. If Sam has done well on his academics he can watch Netflix, a movie or play with something of his choice.  Then it is time for another round of exercise, transfer to the bed and another hour of the extension bar.  When Sam's hour is up another transfer to the wheel chair and back out to the living room. Then comes making dinner, giving Sam his second set of supplements, a little down time to take Buddy outside, check my email or read a chapter or two in my latest book.  We have now added walking into our afternoon session and here is a video showing Sam working hard to make it back and forth in the living room.  He is still learning how to move his legs since he can only weightbear 50% on the left side and he doesn't always calculate very well where he is going to sit down.  I still see a lot of shaking in the left leg during walking and exercises as he begins to reactivate those muscles...but I am so proud of how far he has come in 2 weeks of being at home.  He yells a lot and I'm okay with that...heck I would be yelling too if I was going through what he is. I like to videotape myself working with Sam so I can see areas I need to improve on, like locking the brakes on the wheelchair, not moving the walker forward too far and anticipating better ways to spot him as he walks.  But, WOW look at him go.

After dinner Sam has some down time, more pain medication and at around 8:00 we are usually transferring to the wheelchair, to transfer to the commode and then transfer to the shower chair.  To properly take care of Sam's pin sites we have to shower him on a daily basis.  The first couple of showers were tough because he knew I would be unwrapping his pin sites and he was not happy about it. Jeff had to physically lift him from the wheelchair and into the shower because Sam wasn't helping with that transfer.  Now after 2 weeks he seems to understand that the shower is a necessary evil and he will work with me to stand and transfer.  The first couple of showers were very loud with a lot of screaming and crying but he has adjusted, still says "No" but will calm down once he is in the shower.  He also had some pin site infection so the unwrapping and washing was painful at first.  Why does Sam hate these showers?.  He watches us remove the shower doors.  He has to sit on a hard plastic chair, which we have now learned to cushion with soft towels.  I have to unwrap the gauze and remove the sponges on each of his six pins then use antibacterial soap to floss each pin to remove any crusty debris (Ewww).  When the shower is finished each pin site is sprayed with an antibacterial spray, gauze or a dressing is applied to each pin site, sponges are added for compression and then gauze is used to wrap and hold the dressings in place. Now picture doing this on a child with severe sensory issues...are you beginning to feel my pain??  This will be a long 4 months and we will have our good/bad days.  I had originally requested medical care to help us with this process because if Sam was really going to struggle I was pretty sure my family members were all going to be a little grossed out by this process.  I was correct, neither Jeff, Ben or Danielle can fathom looking at, touching, cleaning or wrapping Sam's pin sites.  But Jeff helps with removing the shower doors, getting Sam into the shower and removing him from the shower...all the time trying not to look at Sam's pin sites.  Ben and Danielle will run and get supplies as needed and try to distract Sam from what I am doing.  Overall, even with Sam's sensory issues...he is handling this pretty well and Jeff and I both agree that adding a stranger to the process would probably upset Sam more than it would help us so we have decided to go it alone.  The next couple of pictures may be hard to look at but I think it gives you an appreciation for what Sam and I are going through.  These were taken for Sam's doctor to assess his pin sites...CAUTION...you may not want to be eating when you look at these. I have always promised that I would share the good, the bad and the ugly to keep everything real.  Well here's the ugly and I think this will quickly help most to understand why this device and this surgery were hugely difficult for me to wrap my mind around. It is one thing to say that the pin goes through the skin, muscle and into the bone...it is another thing to actually see it on your child.

Here are the 2 pin sites at the bottom of Sam's thigh.  They are enlarged due to his struggling/movement the first couple of days after surgery when we struggled to get his pain under control.  We will be using compression wraps to help heal these further.

The next two pictures show the holes that worried us the most.  The first picture is of the 3 holes that are in his hip.  They were red, painful and just looked awful.  After quite a bit of research and knowing that Sam's body does not always react well to medications we are using silver dressings and will try a Manuka honey dressing to help heal these and keep them free of infection.

The next picture is the hole that is at the back of his thigh.  This is probably the most uncomfortable pin because you are always applying pressure to it when you are sitting or laying.

The goo that you see was partly infection and partly tissue granulation.  More medical stuff I never really wanted to know about but no longer have a choice.  When Sam comes out of the shower it takes me 20-25 minutes to apply dressings, gauze, sponge and then wrap to compress.  Every night for 4 months.  Now you understand my Facebook quotes about patience, perseverance and strength.  After the pin care is completed  Sam is transferred back into his bed, the extension bar is put into place, pain medication is given if needed and he sleeps through the night.  We have had good/bad nights depending on how well the pain is managed and if he has any muscle spasms.

Sounds like a really fun day...right??  What I described was a good day, on bad days we alter as needed except for the medical portions that are a must for each day...medication and pin care.

Sooo...how do I do this and remain sane???  Through my faith and by watching Sam lead me through.  If he can get through each day and still manage to smile and laugh along with some yelling and complaining with the pain and discomfort that comes with this type of procedure and rehab...what do I have to complain about??  It hurts me to know he hurts, it frustrates me to have to put him through this but I know I am most useful to him if I am strong, compassionate, patient and fun.  Each day I tune into Sam and let him guide me, if the pain and discomfort is high we snuggle more and do less, if it's a really good day we push a little harder, if he's just tired and worn out he naps, if he's bored we find something to do.  Yep, right now my day revolves completely around Sam and I try to throw in keeping track of Jeff, Ben and Danielle, feeding my family, walking my dog, cleaning my house and finding a little time in between it all to pray, to breathe, and to just dream.  Dream about Sam walking again....dream about Sam having little or no pain on a daily basis...dream about Sam riding his bike again.  I can get through 4 months of anything with dreams and goals like those.  Each day Sam gets up and somewhere, somehow he finds a strength within that gets him through whatever his day is going to throw at him and each day he smiles, he laughs, he tells me he loves me and I dig deep into myself and I decide to do the same.  Good Night everyone!

Praying, Thinking and Reflecting!!

I've spent these last couple of weeks in deep thought. As I reflect on 2011...it really wasn't one of my favorite years.

Sam started it in a body brace as we dealt with the diagnosis of Perthes...and yet I found hope.

When Sam became more stable my health took a downward spiral...and yet I found strength.

I went on an amazing road trip...and I knew I was blessed.

Ben almost lost his life in a truck accident...and I am thankful that he is still with me.

Sam's Perthes continued to progress...and yet I gained knowledge and found more hope.

My father-in-law was diagnosed with colon cancer...and I continue to pray.

I am often asked how I stay positive and I can assure you that it is through faith alone. I'm not that strong, my emotions are worn on my sleeve for good or bad. I cry at sad movies, heck I can cry at a simple act of kindness. Sam's journey has stripped away my buffers, my shell, my mirage of the strong, independent, capable person I like people to think I am. I hurt deeper, I feel things stronger, and it is only by the grace of God that I pull myself up by the boot straps, smile and carry on. But these challenges...these insights into who I am...are the same things that are changing me, building me, bettering me...shaping me into the person God wants me to become. When I was younger I thought I had things pretty well figured out. I worked hard, I liked obtaining the goals I set, I had plans, I had dreams...and I was going to obtain them.

Hmmm, maybe that was part of the problem...a lot of that thinking was all about me. If I was going to have a successful career, marriage, friendships, life in general...I needed to think about others. I always knew I was a bit stubborn, hard-headed and didn't always take direction very well but I always thought that was a strength. I mean...tell me I can't do something and I'll prove to you I can. I have always been more of an introvert but I want people to view me as an extrovert. I like to be in control and I always thought I did a good job doing it.

But now I'm older, wiser and my journey on this earth has taught me so very much. God knew about my stubbornness and he sent me three children, but two (not just one, that wouldn't have been enough) that required extra parenting and attention. I quickly learned when I became a Mom that I had lost my concept of control. When I found out Ben was dyslexic and had other learning issues I wanted to make that go away. I didn't want him to struggle...and yet it has been through the struggle and challenges that Ben has become the young man I see today. He's creative and he doesn't let much hold him back. He is persistent, smart, impulsive, strong and has one of the most impressive vocabularies and along with his wit, humor and quick come backs he is a joy to be around.

Danielle brought into my world a gentleness and a compassion that forever changed me. She is smart and has a wonderful sense of humor. She has my edge, my determination, my drive but she also has a heap of care and compassion. She shows some of my control issues, my sarcastic sense of humor and my goofiness, but she is stronger and wiser than I was. She can hold her own with both of her brothers and she doesn't feel neglected or left out considering the extra attention they both receive. She has an amazing personality and I enjoy her company.

And how do I even begin with Sam. Sam has taught me so much. If I thought I had any semblance of control Sam quickly let me know that I was mistaken. I will never forget the moment we were transferred to the ICU because Sam didn't seem to think breathing was that big of a deal. I will never forget how helpless I felt as I watched the monitor show me a heart rate that was too high and respiration's that were too low and an oxygen level that couldn't be maintained. I remember dropping to my knees and praying with everything I had for God to help Sam...to save Sam. I realized at that moment that I had no control, and all I could do was pray. I wanted to barter, make promises to God...show in some way, some how that I could still control the situation but Sam's stats quickly erased those thoughts from my mind and I simply prayed.

I wanted Sam to achieve his milestones in the same time frame of a typical child or even better. I wanted Sam to be that child with Down syndrome that defied the odds, that excelled above the rest, that others could look at and feel encouraged. But Sam and God had different plans. Sam didn't crawl until he was almost 2 years old and he didn't walk until he was over 3 years old. Every year I waited and waited for Sam's speech to take off. I was sure that by the time he was 4-5 years old he would be communicating easily and we would be having enjoyable conversations. At 4 years old Sam was still considered non-verbal. He had sounds and some words but he certainly wasn't talking up a storm like the other children with Down syndrome at our NACD evaluations. I had to really listen for Sam's words or to understand what he was saying and that's when I had my "aha" moment. I was a great talker but a not so great listener. Sam required me to become a better listener. He relied on me to talk with him and not at him, to talk at his level and to repeat and add to our conversations. In order for Sam to expand his speech we had to have balanced interactions, something we still strive to work on.

I learned strength and resilience through Sam. Sam's numerous medical issues have required me to be strong and resilient. I had to be able to think on my feet, to not become overwhelmed but instead find my inner strength. I would look at Sam and see his smile through the oxygen mask or watch his eyes light up when his family entered a room, or see him work on his breathing, strength training or therapies just to see our excited expression when he accomplished his goal and I would be stronger. How can I even think of giving up when I'm just the observer and I see this child, my child, fighting, working, challenging himself beyond my expectations.

The hardest lesson to learn has been to slow down and give Sam the time he needs and requires. Sam works with me everyday to instill an appreciation for time. Time given, time spent together, time waiting, focused time, time commitment, quiet time...and the list goes on. I could rush through life, stay on schedule and accomplish so much on my own...because that's what I always did. But then I'm not giving Sam...time. It would be easier to dress Sam instead of wait for him to get dressed on his own. It would be easier to make Sam breakfast then to have him learn how to make it himself. It would be quicker for me to complete the chores then to work through them with Sam. It would be easier for me to fill in the words Sam can't seem to pull out quickly than to wait for him to work them out on his own. It would be easier, it would be quicker...it wouldn't be fair to Sam. It wouldn't be what Sam is so desperately trying to teach me.

I never wanted to be a teacher, it wasn't my passion or calling but I did want to be a good parent. Ben was the first to require me to work more with him. Without training or education and with only the strong desire to help my child I had to figure out how Ben learned. I had to learn how to work with him, help him, challenge him and encourage him. Ben was just getting me ready for my journey into educating Sam. Through my journey with Ben and Sam I have gained a true appreciation for great teachers. I struggle with working with Ben and homeschooling Sam. I couldn't even imagine a class of 20-30 students. I have spent some time in the school system as a parent liaison for special needs families. I have met many great teachers but I still struggle with becoming completely comfortable with how our schools are set up and operate. I feel many schools are doing the best they possibly can to live up to the mandates of our government, but therein lies my problem. I don't feel the government should decide how our children are educated or how and what teachers are to teach. I enjoy working with Sam because I follow his lead, we dive deeper into areas that interest him and skim over those that don't. I don't need to test because my observations guide me on areas he needs more work on. I'm not trained to be a teacher...but could you imagine the wonderful things that could happen if a great teacher was given that freedom. The things our children would learn...the experiences they would have...the learning that could take place. I feel our schools do really well with the Danielle's of the world, those children who learn easily and test well. But we are missing the boat on the gifts our children like Ben and Sam have. They require those really great teachers who are going to figure out how they learn, embrace the differences and are ready to see the amazing outcomes.

Sam has required me to rethink so many things I thought I understood...and to change. I never struggled with school, it was easy for me as it is for Danielle. When I started to homeschool I tried to take my school experience and make it work for Sam. It didn't. He didn't like my well thought out lessons plans. Sam fought me tooth and nail. If Sam was going to work with me he wanted it to be fun. If Sam was going to work with me he wanted me to be available when he was ready. I have learned to incorporate puppets, throwing things, physical breaks, music, toy play, magnets and I never ever refer to it as work. Our schedule is flexible and I have come to realize that I am on Sam's time...not mine. I keep track of those things that work and try to re-create them in other areas of study. I have learned that what Sam doesn't like now doesn't mean he won't be ready for it at a later date...thus the ever growing Rubbermaid tubs of homeschool stuff that exist throughout my house. Sam requires me to be "in the moment" not typing on my computer or talking on the phone, not watching TV or doing a household chore without him...but instead to be there with him...listening, talking, being. I think Sam picks up more from our playing together, building puzzles, travelling, card games, chores, going to the zoo or other community field trips...then any of my scheduled lessons.

Sam has taught me the value of all people. I spent a lot of my younger years critiquing other peoples strengths and weaknesses. As I have gotten older I find myself critiquing my own strengths and weaknesses and now appreciating how we are all different and learning to embrace those differences. What Sam doesn't say is expressed so eloquently in his expressions and actions. I love and appreciate how Sam perceives his world. His reactions are pure, he has no buffers or shell, he isn't afraid to express himself, he chooses not to judge or be judged. He radiates love, joy and an appreciation of e v e r y t h i n g.

Like Sam...I am not worrying about the future...I am living in the day. I will strive to enjoy my time here on earth. I will strive to be present, available, loving and lovable. I am looking forward to each and every day! Good night everyone!

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

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

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

Most people...but not Sam.

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

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

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

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

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

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

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

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

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

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

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

You Just Have To Love Him!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Twas the Night Before Christmas!

Christmas is my favorite time of the year! This Christmas has been different, not bad...just different.

I have over the years watched people become totally stressed out at Christmas...at times I have joined them. I have watched families fall apart at Christmas, concentrating on the stuff of Christmas or their challenges instead of the pulling together of family, the love and blessing of having each other.

But this Christmas is different....it is about slowing down, counting my blessings, taking care of someone who is completely and totally depending on me, reflecting and dreaming.

When I think of Christmas it is easy to get excited and overwhelmed about the commercial aspects. Finding and decorating the perfect tree, travelling and shopping to find the perfect gifts, getting a great Christmas picture and creating the perfect Christmas card, baking special cookies you make only once a year, and cleaning and decorating your house for holiday entertaining. Making everything perfect.

More importantly each year we bring out the nativity scene and we attend church together on Christmas eve. We travel to see family and friends and to enjoy great food together.

And yet...

This year much of my beloved Christmas routine is changed. I did not spend hours getting the perfect photo or creating the perfect card...instead I ordered a card online and added a Christmas note and sent them out at Thanksgiving. I didn't walk around the tree lots looking for that perfect tree, I let Jeff find the tree, and he did an awesome job. The majority of my shopping was done online and shipped to the house...I never really went to the malls. I didn't bake this year but my sister did and shared her wonderful cookies with us. My house is not perfectly clean or in order. We needed to change out a room and add medical equipment, not the usual Christmas decorations. The nativity set is out and this year we will have to miss going to our Christmas service and will instead listen online. Jeff, Ben and Danielle will head out to Random Lake to spend Christmas day with the Mayer's while Sam and I spend Christmas with my Mom, Dad & my brother at home. My Christmas is far from perfect, it's kinda messy, a little messed up and a little chaotic.

And yet...

With all these changes...I'm at peace. I am enjoying Christmas!!!

Because Sam is home, his hip surgery is over, he is recuperating and we are enjoying our time together. I may be the main person responsible for Sam's care and he is requiring 24 hour care but I am thankful to be able to do it. Our family and extended family has had to pull together again to help with Sam. I have enjoyed having family come visit although as most have learned I can never anticipate what will occur when they visit. Most of the major medical stuff has passed, the restraining to keep oxygen on, the need for oxygen, pain episodes, bodily function issues, incision management but we are talking about Sam and he still throws me a curve once in a while. I have enjoyed the meals brought over by friends and family which have again brought our family and sometimes extended family together at meal times. Instead of a special meal at a holiday celebration we are having them every dinner hour.

In my head...I have always pictured the perfect Christmas...you know the ones you see on the Christmas specials on TV...but this Christmas Sam has helped me to redefine again. He is always changing my perspective, challenging me to go back to the basics, to slow down and always count my blessings.

This Christmas I'm not just looking at Christmas....I am feeling Christmas. Not in the crazy, out of control, can't wait until this is over feeling but instead a peaceful and calm feeling much like the first Christmas. Smaller, simpler, quieter without all the fancy stuff but instead the drawing together of family, the pure enjoyment of each other. I am thanking God for the many blessings he has given me in my life. I am not angry about yet another challenge with Perthes, I am instead thankful for the new people we have met, the new lessons learned, the slowing down, the enjoying special moments...extra hugs, snuggling and watching it snow or laughing at the crazy squirrel outside, watching the deer, counting the turkeys and the togetherness that comes with taking care of someone who means the world to you and shows you your world in a different light.

I wish everyone could feel this peaceful calm! I wish each of you a very Merry Christmas and I ask you to again learn from Sam...concentrate on those around you, it's not about the stuff...count your blessings and leave your challenges behind, remember that what challenges us...builds us. Simply enjoy life!!!

Getting Moving Again!

As I work through Sam's new diagnosis in my head and in my heart, it brings to the surface so many thoughts and feelings. I want to begin this post with another post from fellow blogger Pia at http://www.thecrackandthelight.com/.

Hello?

New teacher, or therapist, or doctor?

Is that you?

Oh hello…I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart. My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new.

This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

When I read Pia's post, it spoke volumes to me. Sam has been given so many labels and in all honesty there are probably a few more we could tag on. His medical history has not been an easy journey. But through it all....I am and remain Sam's mom and I will never guess what God's plan is for Sam. I have tried, but I have been proven wrong each time. My job here on earth with this wonderful little boy is to love him unconditionally, believe in his abilities and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what I do or how I work with Sam, when I do things for him instead of allowing him to do them on his own, when I buy into the labels he was given and allow them to determine the things he will not do, when I don't take the time to figure out how best to show, teach, and explain/work with Sam....I AM DISABLING HIM.

Do you hear what I'm saying...this is my internal battle with myself. So as Sam's doctor, therapist or teacher...now you know where I am coming from. I don't accept a minor hearing loss as okay, I don't accept teaching one form of communication at the expense of another okay, I won't accept the statement, "Sam will probably never be able to....." fill in the blank. Because if I do, if this is my belief...what chance...what hope does Sam have??? We will reap what we sow. God tells us that.

Give our kids a chance to show you...to teach you as they are teaching us. Don't ever give up on them, don't compromise and take the easy way out. What if Einstein, Walt Disney, Helen Keller, Charles Schwab, Nick Vujicic (http://www.attitudeisaltitude.com/) mothers would have given up on them...where would we and they be today? Before you talk to me about limitations, modifications, medication...look in the mirror...picture someone of authority, a professional saying this to you about your own child, a child you love and believe in with all your heart...and then come talk to me.

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

Sam has learned to ride his bike!!!!

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

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

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

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

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

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

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

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

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

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

Road Trip Diary - DAY 4 & DAY 5

On this day Brooke and Danielle once again donned their bug spray and went on an adventure to find the beaver pond. Their attempt was unsuccessful but they got a lot of exercise in since it was a really L O N G walk. They entertained themselves by singing "over the river and through the woods to the beaver pond we go". They came across an abandoned truck and decided to write both of their names on it. They found an old hunting shack but it was all locked up. I can imagine the thoughts and stories they were making up for how the truck got there and who's shack it was...because naturally they are creative, that's why we have so much fun on our road trips. And then...

as they were walking.

They heard it...

somewhere in the bushes

something growled.

They quickly turned and headed back to the cabin. Did I say quickly...it was more like rocketing out of that area. I guess I should have reviewed with them how you are supposed to quietly turn and back away from the noise. No, instead the two of them took Brooke's boyfriends advice and skipped while singing opera to keep their minds off the strange noises. We may need Wilderness Training 101.

When they came back we went for a swim in Beebe Lake which was at the end of the road leading to our cabin. This is a beautiful, clear lake...so clear you could see the color of your toenail polish when you looked straight down to your feet. A little bit more important to me...was the fact that this lake is very deep. Okay, so I'm not the best swimmer, a little panicky about going under water probably because I have nightmares about that. Sssoooo, letting Sam swim in the lake was freaking me out a bit. I made him wear his life jacket, not really comfortable with just the swim belt in this situation. However you have to remember Sam has extremely low tone, if he's sleeping and you want to pick him up, it's like picking up butter....absolutely no rigidity in this guy. So you put a life jacket on him, float him in the water and immediately the life jacket is moving north as he's g0ing south...picture a life jacket with arms sticking out to the sides, and a head sticking out where the chest of the person should be. I had this fear that if he raised his arms up he would slip right through that jacket and sink to the bottom. This will probably be the new nightmare that keeps me up at night.

He loved swimming in the lake but wasn't extremely happy about the fit of the life jacket. Do they have life jackets for low tone kids and don't tell me about the ones that have the straps that go between your legs. I mean really...could that be comfortable in any way, shape or form??? Especially for a guy???

So anyway, we finished swimming, walked back and ate some dinner. The girls chose the movie "Somebody Help Me", a movie about people that get killed when they go on a vacation to a cabin in the woods. Great choice girls...what were you thinking??? Luckily there was a character named "Kimmy" who was so annoying that the movie wasn't as scary. Sam and I went to bed early so we would be ready for shopping the next day.

On day 5 we went to Bennington to do some shopping. We went into a chocolate store and got to see an 88 pound chocolate moose. Well...there had to be a story there..right??? So I found it for you, check out this link to hear about the marriage ceremony of Benny and Molly: http://www.rutlandherald.com/article/20100821/NEWS02/708219883/1003/NEWS02
Wow, must have been a slow news day!

Anyway, Sam found an animated dancing bear and proceeded to squeeze it's paw and dance with it while the rest of us browsed the store. I'm pretty sure by the time we left they took the batteries out of the bear...welcome to my life. And no, I didn't buy it. Sam's evaluator Ellen frowns on encouraging Sam's stimming or OCD type behaviors.

While we shopped I got a call from Ben...Aaawww...he missed me. NO, he needed to know where his social security and birth certificate were so he could get his temps. I kinda chuckled to myself as I hung up thinking about Ben and Jeff filling out the paperwork, both Dyslexic and neither one can spell very well...but I had confidence they would figure it out because if nothing else they are resourceful.

We shopped for a while and then decided to get Brooke and Danielle something to eat. I have figured out that if you don't feed teenage girls they go beyond cranky and get downright ugly. Suddenly they were snipping at each other and Sam and I quickly recognized we needed to get food in them...NOW!! We stopped at a restaurant in Rutland that served steak and seafood. The decor was dark and it consisted mainly of animal heads that stared and watched you as you walked through the restaurant. We went from hungry and cranky to full and delirious. Sam suddenly grabbed his napkin and would say "Here it comes, here it comes...Ta DA" and then throw his napkin. I don't know where that came from but it cracked us up every time along with the fact that quite a few of the elderly patrons kept choking on their steaks. Note to self: remember to cut my steak into smaller pieces as I age or don't order it at all. I know it shouldn't have been funny but by the third time we were laughing so hard we were crying. You know how when you travel, you figure you will never see these people again. I hope that's true...because they probably thought we were a little strange.

We continued to drive and checked out Adventure Land. It was a cool place but they were closing up for the day so we didn't stay. We stopped at Walmart to get Brooke more string for...YEP...you guessed it her bracelet making addiction. We drove home and had spaghetti and garlic bread for dinner, Sam had hot dogs and cucumbers. The girls movie choice turned out to be a dud, they chose "Cold Storage". Stay tuned for Day 6 & 7, where the adventure turns into a few life lessons.

Steps 4, 5 & 6 of the Path process

Step 4 - Identifying People to Enroll. This step is where you list people, resources, networks and connections that will help Sam realize his goals.


Sam's family all jumped in. His brother, sister and cousin were top of the list wanting to help. The top of my list was Grandma, my mom, the woman who has helped me from day one, who encourages me, listens to me, cries with me and celebrates with me. She and my Dad are Sam's biggest cheerleaders and my number one source for encouragement. We listed Sam's home program NACD, we have a lot of work ahead of us and I know they will help to direct and guide me. We listed his Uncle Faron to assist with financial planning and special needs trust assistance. We listed his teacher, Special Olympics, his church, the YMCA, the state funding organizations, his boss (could be Ben or his Dad), the community, his girlfriend and his roommate. I have added others to this list that I want to work on specific areas with Sam. His Uncle Randy and Uncle Dave come to mind as two people who will help Sam realize his work goals, step by step, slow and steady.

His therapists, we have a lot of work cut out for us and I will need their expertise and help. I would also list organizations in the community we hope to expose Sam to in order to help him build his friendships.


Step 5 - Recognizing Ways to Build Strength. This step has to do with defining what knowledge does Sam need, what skills need to be developed, what relationships need to be maintained. In a nutshell, how do we keep Sam healthy and working toward his goals.

Sam's health has greatly improved with his diet changes, nutritional supplements and exercise. We will need to help guide Sam in making good food choices, remembering to take his supplements and finding someone to exercise with him or work as a trainer for him.


We still have a lot of work to do with Sam's speech. He has made wonderful progress since receiving his hearing aid but we still have a lot to accomplish. We talked about helping Sam increase his social awareness, having him do things that will help him to be respectful and respected. His faith is important and we will have to work with the church to help him become a confirmed member. We want to help him find a peer group, social outlets like 4H or the boy scouts. We need to expose him to what is out there and let him pick which ones he likes.


His home program through NACD, http://www.nacd.org/ came up through most of the steps because we have made the most progress by following their recommendations. It will be with their help that we will help Sam reach his full potential and realize his goals and dreams. I feel so blessed having them guide me and always pushing me gently to expect more.

We determined we will need to define what a job at J & H could look like for Sam and the steps that will have to be put in place to make that happen.


Step 6-Charting Action for the Next Few Months. Honestly by this step we were losing a little momentum and getting tired so we took a break and had some birthday cake. Sugar will always give you a little zing to finish off the process. This step looked at what can be accomplished in the next 3 months.



We decided we could investigate what social outlets are available for Sam. We will check on the progress of his Family Support funding. Brooke and Danielle will try to arrange a play group or take Sam on some outings.

We will begin to work with the school, slowly transitioning Sam into a school environment mainly for socialization at this point, academics will continue to be taught one on one at home.

I would add to this list signing up Sam for the Challenger baseball league and Special Olympics.

My next post will deal with the last two steps of the Path process. Throughout this process and future Path sessions these last few steps are what will continue to push us toward the goal. One step at a time, but always, always moving forward.


I will leave you with this quote from Mark Twain:

Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.

Step 2 "Sensing the Goal" & Step 3 "Now"

The second step of the Path is "Sensing the Goal". The Dream is an expression of identity and orientation. It gives direction. However, the Dream is not the pathfinder's goal. The goal helps the pathfinder realize and deepen understanding of some of the values expressed in the dream. To describe the sense of success, the pathfinder uses the thinking tool of looking backward. The pathfinder vividly and concretely imagines that success has already happened and describes the changes that have resulted as if they are real.

Because this is a first Path for Sam, he is young and we really wanted the family, friends and supporters to join in and knowing that there will be many more path sessions for Sam we visualized what life would be like for Sam at age 19. In most cases you would look out 18 months to 5 years.

At age 19 Sam is in school but may be thinking about graduating and working full time at J&H. His job is established and he is working independently. He has graduated from his home program NACD which would mean he has achieved his neurodevelopmental goals. Sam is speaking and hearing clearly, he is able to express his wants and thoughts. He understands and handles his chores on his own in preparation of living on his own. He is caring for a pet and he is a member of the YMCA and working on his health and physical fitness. He has pride in his achievements and has an award or trophy for one of his accomplishments. He is involved in his church as an usher or volunteer. Of course I can't forget his brother's goal for him, he has his drivers license. Whew...that's a lot to complete in 10 years.

And yet, when I look at this step now I would add even more. I would add his various trips and travels to places that interest him. I would talk more about his circle of friends and their activities and outings. I would talk about what sports he's now involved in and the many activities or hobbies he enjoys which will probably include new toys, like a jetski or golf cart. I would add that he is happy, he feels connected to his community and he loves and cherishes his family and extended family.

This is a great deal of information to think about and reflect on, so Step 3 has us look at what Sam's situation looks like now. A snapshot of the present.

This is what Sam's snapshot/present day situation looks like now. He is homeschooled with assistance from NACD, http://www.nacd.org/. His abilities vary from Preschool to 2nd Grade. He is happy, his health continues to be a concern but is improving. Sam's immune system is becoming stronger with his diet and additional supplementation of Vitamin D, CoQ10, C and Zinc. He is always hungry and his diet and access to food must be monitored. He is talking more and more with the addition of his hearing aid and Speak supplment, http://www.speechnutrients.com/. It will take Sam another year to become fully comfortable with his hearing aid and his new way of hearing. He has learned how to scooter utilizing his weaker right side. His endurance is improving. Due to his homeschool situation and health issues he currently has few friends. Sam is currently best described as an "observer" instead of a "doer".

This gives us our starting point and really gives you an idea of how far we have to go to reach Sam's goal. Next we are on to Step 4-Identifying People to Enroll and Step 5-Recognizing Ways to Build Strength. But for now I need to build some strength by getting some sleep. I think I have given you a lot to think about and stay tuned for the remaining steps to Sam's path. This journey is going to get exciting!!!

Step 1 "The Dream"

Step 1 in the Path Process is "The Dream". Dreaming for most of us is easy...we just do it. But the process of dreaming for Sam had me feeling a little uneasy. It's as if I was daring to dream. Dreams of friendships, employment, independence, happiness, college have all spun around in my mind many times but they never quite gained a solid footing. I couldn't quite wrap my mind around these dreams.

And yet, when I sat with my family, friends and supporters of Sam we hit on all these areas and more. As the "Mom" and Path facilitator I often had to take a step back, let go of my fears and truly dare to dream. I like the Path process because it leaves you with a visual image of the dream which is what Sam is holding. I look at this page of the process often to encourage me and keep me focused.

We dreamed about Sam living independently. Wow, that alone is a big step for me. We discussed the possibility of Sam living with another person with a physical disability but not a cognitive one and that they could help each other out therefore not feeling like a burden to anyone. We discussed Sam living with a friend in a duplex with a support person or family living next to them for a reduced rent. It was really amazing to brain storm about all the possible situations and how we could help others while at the same time helping Sam.

During this process we also talked about Sam's gifts. What does Sam bring to the picture?? I'm sure most of the people present could attest to the fact that knowing Sam has changed their life in some way. His smile, his laughter, in a very simple sense...his presence has touched so many people. No one will forget Sam singing "Jesus Loves Me" or the amazing smile he had on his face as he sang "Happy Birthday". As I looked around the room, his smile and excitement was just contagious...everyone was smiling, everyone was taking a picture of that moment, a moment of sheer joy that will be with them forever. This little boy who has overcome so much, who on a daily basis has more hurdles than you or I could imagine just emits pure joy.

We dreamed about Sam learning to care and cook for himself, driving his own jet ski, even.....(big breath here) driving his own vehicle and if not driving then arranging his own transportation. We dreamed about his involvement with his church, Special Olympics, team sports and a music group. We dreamed of his friendships, a girlfriend (yes, that was another deep breath) and his love of travelling. We dreamed about college and what that might look like. Yes, I said the word "college". We dreamed about possible employment options for Sam. My brother and I both gave examples of when we have seen Sam show pride in his accomplishments. My example was something that happened recently at the shop. My husband has his own heating and air conditioning company and Sam lives to go to work there. But I asked, what would a job look like for Sam. One weekend, a month or so ago, I stopped at the shop to check up on my boys, all 3 of them were there. Ben was working on his recyclables and Jeff and Sam were washing vehicles. Sam wanted to wash my car. While I sat in my car, Sam worked with his Dad, soaping his brush in the water pail and then lifting it to the side of my car and scrubbing. To most people that would not have been a big event, but for me...watching Sam lift this heavy brush to scrub knowing what I do about his muscle tone, his right side weakness and his sensory issues I could only smile. To watch him use his right hand to control the pressure washer as he pressed with his left hand simply amazed me, I couldn't have come up with a better PT or OT exercise if I tried. But what really grabbed my heart was the look of accomplishment on his face, the pride he took in knowing he was helping his Dad out with something that had to be done.

My brother gave the example of him picking up Sam from the shop and unloading branches from his truck. Dave also saw that look of pride as he was doing something that mattered and really that is what we hope to arrange for Sam. A job where he can feel and sense his accomplishment. My brother in law always dreamed of Sam being a caretaker for an apartment building that he and my husband would build and own. We talked about what that would all entail and the skill sets Sam would have to have. We talked about Sam possibly taking over Ben's recycling job and what skills he would have to have to do it. I think the neatest thing for me as a parent was to just talk openly and honestly and to dream again. It was exciting, it was scary, it was challenging. But one thought, one idea that just kept coming through is that we need to take baby steps, small steps forward and the next part of the process was developing some of those steps.

This dream is our dream for Sam, it is not solid or finite, it will change and it will weave around what Sam's dreams are. As he matures and has more of a say in things, this Path will become his Path, what he wants, what he is interested in and what he wants to do.