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!!

A Monday To Remember!

Most of us...would like to forget about Mondays.  Monday is the first day of the workweek, a time to say good-bye to our fun and relaxing weekend and to get refocused on our goals and to jump into the first day of what can be a really long week.  Ugh!!!

But this Monday...this Monday was different.  I'm not sure if it was the supermoon, or maybe my horoscope foretold of the wonder of this day.  All I can say is this was a great day and one I will not forget.

I think God gave me some advance notice because my Facebook entries were somewhat telling. Here is my Facebook notice for Sunday:  What's on my mind???? First and foremost "THANKFUL"...for so many things in my life. PRAYING for family and friends that are in need. LOVING time spent with my husband and children. LAUGHING at the everyday antics of my family. GRATEFUL for the peace that comes with faith. AMAZED by the life lessons that Sam teaches me. BLESSED by the prayers we receive from others. HUMBLED by the everyday miracles that keep me grounded and balanced. HOPEFUL for what tomorrow will bring! Good Night everyone!  


And my entry for Monday morning:  Let's get this Monday started: 
Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. St. Francis of Assisi

Sam doesn't usually like Mondays either.  He tends to sleep in longer...my requests to start our school day are usually met with strong resistance.  I usually don't even push chores...I mean let's face it, we all have to pick our battles.  But this Monday when Sam woke up...earlier than usual...he greeted me with a smile and a "can do" attitude.  I found him dressed in his clothes before I even had to ask a second or third time??? Hmmm, when I suggested heading to the kitchen to get out his supplies for breakfast he smiled and said "Okay".  I don't quite remember...but I think it was at that moment that I felt his forehead to make sure he wasn't running a fever and what I was seeing was some form of delusion.

As he grabbed his walker without a reminder and walked past his hat he handed it to me and said "Turn on".  The look of surprise on my face must have been unmistakable because he repeated it to me a second time.  I turned on the hearing aid on his hat, handed it to him and watched him...frankly wondering "Who is this child??"

Sam finished getting his breakfast supplies out and announced "All done" "Breakfast please".  "Mom, TV Sam's room."  I said, "O..k..a..y??"  I thought this was maybe when the day was going to turn back to normal.  Sam wanted to watch TV while he ate breakfast.  I figured he would fight me to turn it off and get started with our day of homeschooling and yet when breakfast was over and I asked him to take his plate and glass to the kitchen sink, he told me "No" but it was quiet and with very little redirection he headed to the kitchen.

I began feeling kinda empowered...I decided to test fate and throw in a new chore.  When he got to the sink I told him he needed to use the scrubby, get the egg off his plate and put it in the dishwasher.  This was met with a louder "No" but with a little one on one assistance and auditory direction this task was completed. Asking him to put his glass and fork in the dishwasher got me a look of "Really Mom, you're pushing it!" but he did it.

We then headed to the living room to go through Sam's catechism lesson.  Sam listened as I went through the morning prayer, he listened to the Bible verses I read with a chuckle (I'm not sure why), he repeated segments of the first 2 commandments and the Apostles Creed.  My favorite part was singing "Jesus Little Lamb I Am".  He smiled through most of that.  We folded our hands and prayed for family and friends and that God would heal Sam's hip and he repeated parts of The Lord's Prayer. We ended with the blessing and I love watching Sam bless himself.

I then had him head to the computer to begin his academics.  It was met with a weak "No" but he moved into BrainPop Jr. with little to no resistance.  Sam's favorite movie is "Exercise", so a promise to allow him to watch that at the end is all it took to get through the Science, Social Studies, Health and Music videos.  In Science we watched a video on "Animal Camouflage" which he was interested in, Social Studies was "Community Helpers" which he listened to and even tried to repeat extinguisher which sounded more like stinguisher.  Health was about "Caring For Pets" and since one of his chores is feeding/watering Buddy this was a good video.  Music was about "Percussion Instruments" and a set of instruments for Sam to work with should be arriving later this week (Ahhh, the fun we will have making noise music). During each video we stop and chat on areas that interest Sam. I was very happy with his attention to the videos and he was rewarded with his favorite "Exercise" video.

We then moved on to his reading on Raz-Kidz.com.  Sam is on Level D which is fairly easy reading for him but we are also working on comprehension which isn't as easy for him.  So he listens to the animated book once or twice, answers 5 questions and then reads the book out loud.  Today we read "In The Woods" and Sam got 4 out of 5 questions correct.  But what was really neat was to watch and listen to him read the book.  Sam struggles with word retrieval, he often switches similar words house/home, on/in, woods/forest but if I lingered on the word he was usually able to retrieve the correct one. Sam often yawns when he reads but he was able to get through with very little yawning or resistance.  We were on a roll!!

From there we went through his math and reading lesson on K5learning.com.  He had a vocabulary lesson in reading and a "what number comes after" lesson in math.  He did well with both of these and was rewarded by doing his favorite PowerPoint lesson "My Colors".

I then had Sam work on his aim with the Nerf gun since he still struggles with some vision issues but he thinks this part is just play.  We sat down and read one of his favorite books about trucks and transportation equipment.  We talked about the pictures and I drew a quick dump truck that Sam colored as he stretched out on the floor.  Sam moved over to the kitchen table and we worked on the KidCalc app that  walks Sam through 4 addition/subtraction problems with the reward of completing a picture.  I told Sam we need to get 3 pictures, I was again floored when he chose to do 5.  That is 20 math problems.

Sam then worked on his writing with the "Write My Name" app in which he writes his name, Dad, Mom, Ben, Danielle and 4 short sentences.  What is really great about this app is how it guides his writing but then allows him to see exactly how he wrote each letter.  As I made lunch he listened to two books on the Grasshopper App.  At this point I really felt like the day could not get much better.

After lunch we headed to speech which went okay although I had noticed a stiffness or increased limp on his way in.  After speech we headed to the pool for aqua therapy.  I decided to attempt a goal that we have never been able to meet.

Sam has been doing therapy in water since he was 2 years old.  He loves the water but his eyes don't handle the chlorine and chemicals very well and he loves to swim underwater.  Over the last 9 years I have purchased many different goggles but Sam never adapted to any of them.  Sam has huge sensory issues around his head and I remember stressing out over his hearing aid but Ellen Doman had told me "If he can hear better...he will wear it" and he did.  So I rationalized that if the goggles worked for him and kept water out of his eyes he would wear them...right???  But none of the goggles seemed to fit right or work well for him.  So I jumped on the Hammacher Schlemmer site.  This company tests all the products listed in their catalog and only sells the best of the best. They had a pair of swimming goggles for $23.00 and I decided to give them a try. After all they had a lifetime guarantee.

Sam sat on the edge of the pool and I showed him the goggles.  His voice became very loud as he yelled "NO GOGGLES, NO MOM".  There were 4 to 5 senior citizens in the pool and a group of people from a local group home and a few others.  As Sam's voice got louder they all began to turn and stare.  Normally these situations would make me very uncomfortable and I would try to quiet Sam and probably give up.  My mind would have gone to that place where I see them telling their friends and family about the horrible Mom at the pool who tortured her poor special needs child with a pair of swimming goggles. But today was an amazing day and he had done so well with so much that I felt with a little push "He could do this."  I ignored the stares and just concentrated on Sam telling him "You can do this, Sam.  I know you can." His therapist and I united and said "No swimming if you don't wear the goggles."  Sam yelled louder and every time we got them on he just pulled them off and tried to throw them.  After probably 10 attempts, Wendy threw some dolphins in the water and let them sink to the bottom.  We attempted to put the goggles on one more time. A gentleman from the group home joined my encouragement to Sam and told him "You can wear the goggles Sam. You look cool."  As soon as they were on I told him "Dive under water Sam, go ahead, get the dolphins"...and after one more very loud yell he dove in and when he came up and gently tapped the goggles...I knew we had finally accomplished the goal.  Sam began to dive underwater again and again and each time he would try to go deeper.  I don't know whose smile was bigger...mine or Sam's.  He began to go under and he would start talking before he came up, he said "Mom, Sam's toes, cool".  He swam under water for longer and longer which is so great to help him work on his deep breathing and lung strength.  Wendy, his therapist said, "I'm pretty sure those are magic goggles."  The people around the pool stopped staring and began smiling, they were as amazed as I was that a little boy so dead set against a pair of goggles could now embrace them as the coolest thing in the world.  Wendy dove with him and she said his eyes are wide open and he is just taking everything in and his smile is from ear to ear.  Sam swam and swam and swam...as his Mom I swam too...in happy tears.  His hip no longer seemed stiff or sore, he dove and he swam, he dove and he smiled.  After a while he began to lift the goggles up if any drips of water got in and he re-adjusted them himself. No direction and we were no longer worried that he was going to rip them off or throw them.

It seems like such a simple thing...getting a child to wear swim goggles and yet this was a goal that was 9 years in the making. Tonight I am so very proud of Sam. I'm pretty sure he is still swimming with his magic goggles in his dreams!


"Being your best is not so much about overcoming the barriers other people place in front of you as it is about overcoming the barriers we place in front of ourselves. It has nothing to do with how many times you win or lose. It has no relation to where you finish in a race or whether you break world records. But it does have everything to do with having the vision to dream, the courage to recover from adversity and the determination never to be shifted from your goals." 
Kieren Perkins-Olympic Gold Medal Swimmer

A Little Inspiration!!

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

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

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

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

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

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

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

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

My Momma Said There'd Be Days Like This!

It might be more appropriate to say "Weeks like this". Winter in Wisconsin can be a beautiful time...

...but it is also a time of sickness, viruses, sinus issues and let's add in hip pain. It appears that our changing weather fronts are causing havoc with Sam's hip. We were in an upswing with more mobility, no traction and improved stability when walking. I quickly thought Sam's new supplements were finally heading us down the right track and they still may be but Sam's hip is still causing him issues. In the last couple of weeks Sam is doing more crawling, less walking, more time spent in the recliner, his frustration level is up and he is whining. Here is Sam today putting himself in traction for the 2nd time today.

Now add two teenagers with sinus, colds and unknown viruses and we have a recipe for disaster. I am also prone to sinus and migraine issues in the winter so we all get to commiserate together. One big happy, err...whining family of pain and general unhappiness. Oh joy! Ben is going in to the doctor today for a possible ear/sinus infection. Danielle will be starting rehab for her knee injury from volleyball (great more therapy sessions in a week). I continue to rub Sam in with oils, diffuse them into the air and struggle to get him focused on learning something...anything...even just a daily life skill or two.

Our current focus has been on something near and dear to Sam's heart....eating! My goal is to get Sam making meals for himself. It seemed like such an obvious and simple goal. We all eat, we require food and eating is one of Sam's favorite things to do. Yep...it seemed easy...until I tried teaching him how to make breakfast. Sam struggles with auditory processing...let me explain that in laymen terms. Sam hears but does not listen and comprehend well, he often tunes people out when they talk because it is too difficult to follow. I kinda picture Sam's processing like the old Charlie Brown movies where the teacher would talk and all we would hear is "Wah wah wah wah wah". Sam tends to pick up on the first and the last word or two of a sentence. When people ask Sam "How are you?" he will often say "11 years old" thinking they asked "How old are you?" If they have that confused look he will then quickly say "I'm good" and smile. Sam struggles to follow auditory directions. Sam has both a hearing and processing issue so something we take for granted, understanding the spoken word...eludes him. Now that doesn't mean that Sam can't follow directions or understand concepts it just means it's a ton of work for him to hear, listen and comprehend and it is imperative to work with him in a way that works and makes sense to him. It's equally imperative to be patient with him, give him time, allow him to express himself and work with him in order to hold a conversation. One of my favorite things about Sam is when we are working through a conversation and I'm answering appropriately which means I've understood and interpreted what Sam has said...the look on his face and how his eyes light up is priceless. Now did you read that last line? That thought process is what keeps me talking and communicating with Sam each day. It is work to converse with Sam. You have to be patient, interested, listen at a level that most people will never develop. You have to be present, in the moment, committed and you have to enjoy the experience. It is a lot to ask of a person...but isn't that what we are asking of Sam and even more??? We are asking him to work through his hearing issues, pick up what he can, process it and figure out the missing pieces, pull out an appropriate answer, manipulate an articulation system that has some broken pieces and respond. Ask an adult who has suffered a stroke how frustrating it is to communicate. That frustration can often lead to depression or anger but the part that amazes me about Sam is no matter how frustrating the process he continues to work with me. Teaching Sam to make a breakfast is a challenging and patience building experience. Let me share the journey with you.

Sam's breakfast usually consists of 2 eggs made in coconut oil, 2 slices of gluten free bread with ghee butter and organic cinnamon and a glass of apple cider or fresh squeezed orange juice. The first part of working with Sam is to show him the expectation so I demonstrate making the breakfast. I show him where each of the items is stored and I walk through making the breakfast. For most neurotypical kids this step would be enough to complete the task. Not so for Sam. We began with locating and getting the items he needed for his breakfast. I first tried to walk him through step by step auditorally which failed epically within the first couple of instructions. He got frustrated, sat on the floor and refused to even acknowledge that my lips were moving. Okay...regroup...I'll write out the instructions because Sam's reading is stronger than his ability to follow auditory instructions. So I wrote out the instructions and Sam struggled with processing the whole sentence and finding where he left off so he kept trying to start from the beginning each time. Frustration x 2 = Mom and Sam looking at each other hopelessly. Okay...regroup...what if I do a visual guide. Walah...a visual guide to help direct Sam on what he needs for breakfast.

I showed Sam how to use the guide and he really enjoyed watching me but when it came his time to follow the guide...not so much enjoyment. He got a plate and called it a day.

Whew time to rethink. I know Sam wants to eat, I know he can follow a visual guide...yep...I'm pretty sure this is behavior. Time to switch over to my behavior analyst hat. This does require walking around the kitchen and the hip is a wee bit painful lately so we will place a chair centrally located in the kitchen for a rest stop. Sam was happy to just sit on the chair and say "NO" when asked to get out his breakfast items. Grrrrr...I know you can do this Sam. It's time to pull out the big guns. I say "Sam, you do or no breakfast." Said with an authoritative"I mean business" tone. Sam understanding his lack of doing means no food is starting to get his attention but he is still whining and refusing to proceed.

Sometimes with Sam, the best thing is to walk away and let him think about it. I again using my best "I mean business" tone say "Sam, you do or no breakfast." "I'm taking my shower" "Sam do it". I walk away feeling somewhat deflated, teaching when it doesn't work is very deflating to the ego. I'm not asking him to prepare a gourmet breakfast for the two of us and have it on China by the time I finish my shower. I just want him to pull out the supplies needed to make breakfast. As I took my shower I tried to keep positive thoughts that he was doing it but if I'm being honest I kinda figured I'd be regrouping again.

I finished my shower, got dressed and headed to the kitchen. I was happily surprised to see Sam sitting in a kitchen chair with a smile on his face. This is what greeted me on the guide.

Okay, not perfect, but it was an attempt and I rewarded him with a high 5. We then looked at the guide and I was able to quickly walk him through the corrections that needed to be made. I gave him the benefit of the doubt on the bread because his bread only had two pieces left and it was under the bread he pulled out. The pan he chose was conveniently sitting on the counter so he didn't stress himself in getting the right pan out of the cabinet. The salad dressing I believe was Sam's attempt at humor because he couldn't wait until I asked him about that item. He smiled and even laughed a little when I asked if we use salad dressing for breakfast. He quickly told me "cinnamon" and got it out. The items missed were quickly found and placed on the guide. He did it and the look of pride on his face was hard to miss. The next day it was easier and each day it has gotten easier except when the hip is hurting too much.

The next step is to show him how to make breakfast. To most of us it's pretty simple, but take a moment and break the steps down to single instructions?? Yep, are you feeling more challenge and fun is about to befall us. My first instruction was regarding the toaster. Sam was happy to get the toaster out and plug it in. I was encouraged, even feeling a little confident that this was going to be the easy part.

And then it happened.

I asked him to get two pieces of bread and put them in the toaster. A simple instruction unless you struggle with fine motor skills and those two little pieces of bread are being held hostage by of all things, a twist tie. The twist tie is a seemingly harmless invention created in 1939 by T&T Industries unless you are Sam Mayer and it is the obstacle that stands between you and those two pieces of yummy bread. The twist tie was the end of the cooperation. I tried to show Sam how to untwist the tie but he wanted nothing to do with it. My mind began to figure out a compromise. I could put his bread in a ziplock bag...but then...I pictured Sam as an adult at the grocery store unable to buy anything that had a dreaded twist tie. Damn you, twist tie! You won't win this battle. To work on the twist tie I would bag some of Sam's favorite snacks and have him master the twist tie. But Sam is no dumb bunny...he simply ripped the plastic and left the twist tie intact. Hmmm...I found some wire ribbon, kind of like a big twist tie and I wrapped it around his Ipad. He tried to pull it off but I made sure it was pressing into the rubber cover and then I saw the thought process occur. He was replaying my instructions, "Gwab tie and twit". In my mind I'm pleading with the powers to be to have him "twit" in the right direction. And it happened, he got it and again the look of pride and "I can do it" knowledge was upon him.

The next morning he grabbed that bread with gusto and with the words "Gwab tie and twit" it was opened, the bread was in the toaster and he pressed the button down without me saying a word. I was so proud of him. Another seemingly simple instruction accomplished. Our next step will be to remove the hot toast and butter it. And he'll do it. The bread may be in pieces the first couple of times but with patience, persistence and practice that skill will be learned too. I'm still trying to wrap my mind around cracking the egg, putting it into the pan, turning on the burner and flipping the egg with the spatula. Yikes!! What I want to demonstrate is the technique of breaking it down into doable steps and what I want to convey is the courage and encouragement to take those steps. Is it work?? Yeah...but someday when I come over to have breakfast with Sam that he prepared for us at his house...I will smile!!! At any point I could choose to give up, to take the simple way out and just continue to make Sam his breakfast. But Sam is teaching me to appreciate the small steps, to realize and problem solve the things that could defeat us and to keep moving forward.

Finding Answers!!!

Many of you have noticed that my blog posting has dropped off...I've been kinda quiet. It isn't from lack of events or not enough happening to post about. We all know Sam would never allow me to get bored. It was something different.

Did you ever have someone ask you a question or make a statement...and for some reason that question stuck in your head and you couldn't let go of it? You find yourself thinking about what they said and you wonder why you keep thinking about it. I always consider those messages heaven sent. Someone is trying to tell me something or something struck a nerve and it is an area I need to work on or need to focus some attention on.

Every morning I pray that God would be with me and guide me. Well, let's just say there's been a lot of guidance occurring lately. It all started a few weeks back when we found out that Sam's hip had not shown any regrowth and we repeated Sam's bloodwork. The results we got back from the bloodwork was encouraging. Here in an excerpt from my letter to Sam's doctors.

The major changes in the bloodwork to note are:

Test	Sam’s level 11/1/11	Range	Sam’s level 1/13/12	Notes
IgG	685	508-1080	739
IgA	44	52-232	48
IgM	18	36-226	34
Ionized Calcium	1.13	4.5-5.3	4.80
Magnesium		1.8-3.0	2.1
Vitamin D3	32	30-100	58	Original level 18

The changes we have noted are as follows:

Sam is healthy, no illness since his hospitalization for double pneumonia even though his brother and sister have both been sick.

Sam’s eyes are no longer constantly dilated. Both eyes are working properly.

Sam’s posterior rash is showing marked improvement.

Sam’s bowel movements have increased to 3 times per day, formed and light in color.

Sam is able to tolerate a full dose of Nutrivene without any adverse affects.

Sam’s recovery from his course of intravenous antibiotics which would normally be around 6 months to get his system back on track which includes reduction in yeast and excessive stimming is already on track.

Sam no longer is constantly seeking food and has lost 6 lbs.

Sam is able to pull out more words, not just scripted speech.

Sam still struggles with listening, processing and responding unless physically cued.

Sam has shown better intuitive play skills.

Stimming had picked up in the beginning (including vision play, repetitive actions (tapping, arranging, OCD behavior), constant “Mom” request, excessive self talk or playing movie/cartoon episodes out), and has now reduced to a lower level but he still has a great deal of verbal stims. Basically now if Sam is bored he will stim.

Sam is showing better ROM in his left hip. He is now sitting Indian style in his wheelchair, can rotate his hip to go further underwater and is more cooperative in pool therapy depending upon the day and his mood.

Sam is still asking for the wheelchair for distances further than his mobility within the home. He is no longer putting himself in traction but still needs to change position on a regular basis. Sitting for longer periods such as a trip to the Zoo will cause him to lay down more often when we return. I have seen an increase in crawling sometimes from one room to another and he still shows marked discomfort in a standing position.

I would love to say Sam is easier to work with, but Sam is Sam and he has a strong personality (must be a family trait), overall I think he feels better and his frustration level and tolerance of chores, home program and therapy has improved.

Sam continues to have speech therapy (2x per week), aqua therapy (2x per week), NACD (www.nacd.org) home program, respite care out in the community 3x per week and he will now participate in Special Olympics in swimming.

Along with this update I had sent Sam's x-rays and MRI to Dr. Dror Paley, a renowned Perthes specialist located in Miami Florida. Even though the medical records and x-rays got delayed and no one seemed to be sure if they were sent out or not...I didn't get anxious, frustrated or worried. I was calm...not something that happens often with my A type personality. Prior to the bloodtests I was ready to pack my bags and head to Miami for what I thought would be more surgery...but the bloodtests gave me hope. I wasn't disappointed or surprised when I received Dr. Paley's response:

Since the hip is well contained and well covered and since Shenton's line is reduced, the decision making at this point is based on only two factors; hip range of motion and Shenton's line. If the range of motion is good and Shenton's line remains unbroken, then no further treatment is required for now. If the hip range of motion deteriorates or if Shenton's line becomes broken indicating collapse I would use distraction.

We are okay. Now being the A type personality that I am that doesn't mean I didn't have a few further questions about bone regrowth and how long to wait nor did I stop my continuing research on hyperbaric oxygen treatment for AVN...but we are okay for now. We can relax.

I turned my focus on just enjoying Sam. I invited his cousin Eli for a weekend stay so they could spend some time together and go to the monster truck rally. They had some great air hockey matches and I loved listening to the two of them talking together. Eli said he could understand most of what Sam said and to me that in itself was a blessing and showed how far we have come. I smiled as I listened to the two of them talk at night before going to sleep. Sam calling out to "EI" and Eli always responding "Yes, Sam". In order to make it equally as fun for Eli and to accommodate Sam's schedule we also had Eli go plowing and to work with Ben.

Eli, Ben, Sam, Jeff and I all enjoyed the monster truck rally. Sister Danielle was off on a girl's weekend filled with skiing and snowmobiling in Michigan. This was a first time experience for Sam and yes...I wondered how he was going to deal with the noise.

When it was about to begin I put a head set on Sam. He immediately handed it back to me. But then the first truck started it's engine and Sam quickly turned to me and said "Mom, too loud!" I put the head set back on, he tapped it a couple of times and decided it was a good idea. No meltdown, no issue...he just removed them during the down time and asked that I put them back on whenever it got loud.

HE LOVED THE MONSTER TRUCK RALLY!!

All 3 boys wanted to stay afterwards to watch the clean up. Yep, those are my boys.

Our snowfall has been pretty non-existent this year but when it did snow Sam wanted to go outside and play. Putting snowpants, boots, mittens and a hat on sensory boy has never been something to look forward to. Add in Perthes and everything just becomes a little harder, inability to stand for any length of time which means putting on snow pants and boots is a challenge...then let's try to walk with a leg length difference, already unstable balance on crunchy uneven snow. Doesn't that sound like fun?? But this smile...

...and seeing Sam sit cross legged on a sled is definitely worth it.

I love watching the interaction between him and Buddy.

This big beautiful dog is Sam's protector and friend.

Sam and I laughed as Buddy's split personality came out. Here he thinks he's a retriever.

And here, he's playful as a poodle.

Sam did great on our walk through the woods...of course him sitting on the sled and me pulling. No need to go to the gym, I can just hang out with Sam. Between pulling him on a sled or pushing him in his wheelchair and wrestling his wheelchair in and out of my trunk I feel I have completed my workout. Whew!!

Sam often rubs his left leg when we are outside. The only thing I can think of is that his hardware reacts to the cold. As he made his way out of the snow with my help his hip needed a rest before he could venture into the house. So he laid down on the driveway for a few minutes.

It's kinda sad that something so simple like playing in the snow can cause such pain and discomfort.

In an effort to break away from the research and medical issues I even took a day to enjoy one of Danielle's volleyball tournaments.

I love watching her volleyball games and I think she is becoming a very strong player. I am proud of her making the club team and I hope to attend all of her games.

We celebrated Ben's 17th birthday. Time is just going by too fast. I still remember the little boy working on his John Deere toy tractor on the driveway...now he's working on his diesel truck or one of his many other toys.

Everything was going pretty well. I was often times too tired to stay up and write on the blog. Sam's nutritional requirements, diet, therapies, home program and medical appointments seemed to fill my day and I tried to get everything else done in between. And then came the comment that would change my thought process.

Sam and I had gone to the YMCA for his aqua therapy. As usual I sat in the chairs next to the pool with his wheelchair and watched him and his therapist Wendy in the pool. A group of adults from our community rehabilitation center for people with developmental disabilities had just left the pool area. I often watch these people wondering what they were like when they were Sam's age which of course leads me to thinking about what Sam will be like at their age and then I stop myself and remind myself to just take it one day at a time. As I was sitting watching Sam a man and lady came up to the edge of the pool, the lady asked "Are you a caretaker?" Thinking she thought I was a respite worker I quickly answered, "No, I'm Sam's mom". She raised her eyebrows and then smiled and said, "I'm a caretaker for him, my husband." Her husband smiled and waved and then they both walked away. It was one of those moments that you sat and wondered if you had answered correctly. As a mom of a special needs child we are put into many different roles: mom, nurse, therapist, teacher, friend, bodyguard...and caretaker. I wasn't sure if I was struck by the thought of wondering when you go from being a wife or mom...to just a caretaker. Not that being a caretaker isn't an important job but if we were to look at the hierarchy...I think it would rank below wife or mom. I wasn't judging this woman's response because I have long learned that I can not judge anyone unless I walk in their shoes. But something about that encounter kept bothering me. I absolutely understand the role of the caretaker. When Sam was in his body brace he required my full assistance 24/7 and I was happy to do it. I have often heard parents of children with significant medical needs refer to themselves as caretakers. As much as I tried to reason it out or let it go...it just kept coming back to me.

Then the other day Sam and I had a rough start. I wasn't sure if he had slept poorly, if his hip hurt, if he didn't feel good. Add to that the fact that my shoulder and back was sore and I woke up feeling tired not just physically, but mentally. Put the two of us together and we were a force to be reckoned with. I decided to opt out of program and head to the grocery store. As I began to wheel Sam in I began to dread the usual grocery store experience. Sam is a "meet and greet" kind of guy and will say "Hello" to everyone he sees. At this particular store he usually receives maybe 10 to 20% of positive replies. A lot of people ignore his "Hello", act like they didn't hear him (and we all know Sam has never been really quiet) or shuffle off in another direction. I felt the cloud that was following me...creeping in further. We came to the produce area and our first victim...no scratch that....disappointment...no too negative...we'll just say person came into view. Sam immediately smiled and yelled "Hello Lady". She smiled back and said "Hello, what's your name?" Sam answered, "I Sam". The lady replied "It's so nice to meet you". Sam said "Bye lady, later." She chuckled, said "Later Sam" and walked away. I wheeled Sam over to the deli and out of the blue another lady walked up and started up a conversation with Sam. I couldn't help but smile. This lady thanked me for allowing her to converse with Sam. I wanted to pinch myself...maybe I was dreaming. This continued on in every aisle. It was as if someone announced we were coming and everyone was told to be on their best behavior. By the time I got to the last aisle, I was chuckling and thinking "Wow God, you're good". In the last aisle we came across an older man we often see at the store and he never acknowledges Sam. But today he said "Hi young man" and I almost fell over. Sam was in his glory and I was again humbled.

When we got out to the car, I thanked God for giving me a much needed boost and I prayed that he continue to guide me. I also asked him to explain why I was so struck by the caregiver comment and can't seem to let go of it.

When I woke up this morning and began to go through my day with Sam...I got it. Sam and I have been working on chores and daily living skills with what I thought was a mild enthusiasm from Sam. Due to Sam's auditory processing issues I have been using visual guides to assist him. Sam didn't seem interested and protested at every chance he could. I had begun to give up, to do the chore myself or to move on to something else...but this morning I decided to see who was the stronger one. I brought out Sam's visual aid to help him collect everything needed for breakfast. This requires him to pull things out of cabinets, the refrigerator, use his step stool and place the items on the counter top. He began to protest. I stood my ground and decided to reinforce the concept. I pointed to the guide and said "Sam do or no breakfast". He got out a plate and put in on the guide and then decided to grab a bag of chips instead. I met him in the living room and grabbed the chips, returned him to the kitchen and repeated "Sam do or no food". I left and went to take my shower. I fully expected that when I came back he would be sitting in the front room watching TV having made no progress toward breakfast and I would have to walk him through it again. But much to my surprise he was sitting in the kitchen and there were items on the guide. Now it wasn't perfect but it was an excellent try. You could see the pride on his face. He had done something that mattered. We made the necessary corrections and I rewarded him by making breakfast. As I was making breakfast a few things struck me. Sam didn't make a good attempt until I left the room, I think he is used to me giving in or getting tired of waiting. My expectations are too low, he can definitely do more than what he is showing me. That's when I got the answer to my question. I am obviously a good caretaker but I don't want to be one. I want Sam to be independent but my actions have not reflected my feelings. When Sam had his surgery I became the caretaker 100% and I had too. But that setback did more than just slow down Sam's progress it made me change my thinking and alter my overall journey. Believe me, Sam is more than happy having me be the caretaker and easing the burden of teaching and helping him to become more independent. Wouldn't any of us like to have someone wait on us hand and foot...but then I see the look of pride in Sam's face when he accomplishes something on his own and I have to continue to move forward, to caregive less and challenge more. It's a difficult line with a child that now has a physical challenge along with his normal day to day challenges. I know this is the message Ellen Doman was trying to get through to me with our latest NACD program.

Jeff and I have talked about building a new home. I have asked him to consider building the one level handicap accessible ranch home we would like but also building a second smaller home for Sam. Someplace he could call his own and be completely independent and responsible for. The lot we have purchased would accommodate two homes and give Sam some space and privacy to work on his skills and abilities while allowing us to monitor his progress. I have learned that Sam often does better when he realizes that what he is doing is important and must be done and Mom is not there to do it for him. Kinda like the mantra that constantly runs through my head when I am cleaning our house "It's gotta be done and if I don't do it no one else will." The fact that I have that mantra is probably another message but I need to picture Sam saying and doing the things he needs to do to be independent. If I set that as the goal I quickly realize we have a lot of work ahead of us. Oh, who am I kidding if I have that mantra there is work to be done with all three of my children. We are starting with chores and will expand to breaking down Sam's day so that he can accomplish more on his own. Letting go and letting him do more. It's scarier than having Ben or Danielle do more, alot more worries and unknowns, but it is necessary. Sam may decide he never wants to live fully on his own and that's okay too. The skills he is learning will make him an integral part of the family he is with.

Let me share what it looks like to shadow Sam and the struggles both he and I face. Yesterday I began with the trip to the YMCA for aqua therapy something Sam does twice a week. I told Sam we were going to the pool and he needed to get ready. He looked at me and didn't move because normally I would put everything together and he would just have to walk out to the car. So I had to stop myself and think what would Sam have to do to go to the YMCA by himself. I told him he needed his YMCA bag. He found it and dropped it at my feet. Do you see the trend I've instilled now??? I asked him "What do you need for the Y?" He told me "swimsuit, towel". I said "Well, you better go get them". He did and I was thrilled to see him put them in the bag and zipper it up. He said "Okay, Mom go". I said "Hmmm, we'll need to get a locker". I was thrilled when he opened the side zipper and said "Okay, card". He watched me get my shoes and jacket and followed suit without any prompting. This is better! As we walked out to the garage he looked at his wheelchair and said "Mom, stop, wheelchair". I played dumb and said "Yep, that's a wheelchair". Sam said, "Mom, stop, wheelchair trunk". I told him "You're right, we'll need to put the wheelchair in the trunk". Sam gets into the car on his own and puts on his seatbelt and of course reminds me to put mine on too. We drove to the YMCA and Sam told me to get the wheel chair. This I have to do so I jump out of the car. Sam always locks his door and waits for me to say "Open please". He smiles and opens the door. I wheel him in since he does not have the strength yet to wheel himself but we work on a small section of self propelled wheeling and then have Sam press the handicap door openers. He presented them with his card with a wonderful "Hello Lady" and even answered when they asked "How are you today?" and got his key. We headed to the family locker room and Sam began taking off his clothes and then waited for me to get out his swimsuit. I went to the bathroom and took time washing my hands so he decided to unzip his bag and get things out himself. He put on his swimsuit and placed the towel on his chair. His clothes remained on the changing platform. I pointed to them with a questioning look and he said "Put in bag". I said "You should do that" and he did. I had to tell him to zipper the bag and then he hopped into his wheelchair. I pointed to the key and he grabbed it. We went out to the lockerroom and more tests for both Mom and Sam appeared. Sam had the key but didn't look to see what number he had and proceeded to try to put the key in the nearest locker which of course caused instant frustration. Yep it would have been easy to grab the key and put it in the right one but than I'm not shadowing him in a way that he will learn what to do in that situation. I told him to stop and look at the key. He of course looked at the back of the key and when I turned it over he said "5" even though the number was "15". I had him try locker 5 which didn't work and told him to look at the number again. After whining he got to the number 15 but still proceeded to locker 13 because that was the closest. I said "Sam, look for locker 15". Yep the frustration was beginning to show for both of us. He finally realized that locker 15 was next to 13 and attempted to put the key in upside down. Deep breath and space as I watched him talk himself through turning the key around and trying again. Finally the locker opened and he put his bag inside. He jumped back in his wheelchair and I waited and finally pointed to the locker. He said "oh yeah close, get key". He handed me the key but what I couldn't help but notice is the look of satisfaction on his face. We repeated everything when we left the pool and I was pleasantly surprised when Sam wanted to help me load the wheelchair and bag in the trunk instead of just jumping in and waiting for me.

Is it time consuming? Yes. Does it test my patience? Yes. Does it require me to continually think about what we are doing? Yes. Does Sam becoming more independent encourage me and scare the crap out of me at the same time, YES! But is it all worth it when I see that look of satisfaction, of a job well done on Sam's face? YES, YES, YES!!

A typical parent can worry about independence but a parent of a special needs child has so many more unknowns. The locker situation would not have frustrated the typical 11 year old, they would have figured it out on their own. Our next step would be to have Sam go in the room by himself, then to go into the locker room by himself and finally have him go to the men's locker room by himself. Doesn't seem really scary to the average parent of a teenager, but in order to make a proper comparison you have to think about doing the same thing with your 3-5 year old child. Letting them go into a room or men's locker room unattended, unsupervised. Now what thoughts come to your mind? Do you feel the anxiety? Do you begin to understand why this process is so difficult for us as parents?

My new mantra "Expect more, do less, patience and persistence will prevail." Add in Sam's mantra "We did it" and how can we go wrong?? It is never too early to start shadowing and thinking about how to teach those things that most of us take for granted. Each day Sam will challenge me to walk a tightrope I often feel has no safety net. How much can I challenge and expect him to do but keep in mind his health and medical issues. How do I help him reach his full potential and yet keep him safe or am I really working on both of those issues at the same time??? Today I pray for courage!! Courage is defined as that quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.

Any intelligent fool can make things bigger and more complex... It takes a touch of genius - and a lot of courage to move in the opposite direction.
Albert Einstein

You cannot build character and courage by taking away a man's initiative and independence.
Abraham Lincoln

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
Winston Churchill

Sorting It All Out!

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

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

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

So what does that all mean???

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

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

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

What's Next?

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

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

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

So, what's next?