Wednesday, July 29, 2015

A Very Overdue Update!!

Hello Blog followers.  I know you are wondering, what happened?  Where did she go?  No updates for months? Is Sam okay??

In the last couple of years, we have had our share of challenges to physical being and spirit...but I think, I hope we are on the comeback trail and we are embarking on a very exciting time.  I have also noticed a whole new group of blog followers and I welcome you and will provide a little history so you can get caught up or you can grab a really big cup of coffee and keep hitting the older posts button until you know Sam's story inside and out.

First and foremost Sam is amazing!!  Sam will turn 15 this year, where did the time go?? When Sam entered this world weighing an astounding 10 lbs. 2 oz. and with a surprise diagnosis of Down syndrome Jeff and I had no idea of the journey we were about to take on.  We quickly learned that Sam had respiratory, immune and feeding issues. Sam's first month was filled with doctor appointments and hospitalizations for illness.  During one of those hospitalizations we were moved to the ICU when Sam stopped breathing on numerous occasions and we were told that he had suffered a brain injury from oxygen deprivation that would effect his right side and forever change our world. We were told he may not walk or talk, he would have the cognitive ability of an infant, he might never be potty trained or may have some success at a later age and if the respiratory and feeding issues continued a trach, feeding tube and midface extension may be necessary. Sam also had an ASD heart defect. It was a lot to take in and process as you looked into the eyes of your beautiful baby boy, it was more than this Mama's heart could fathom...but part of me was angry.  How could they predict what this one month old was going to be able to accomplish in his life??  We hadn't even started working with him, where did they get their glass ball that could predict his future? Where was the hope and faith that God would see us through??

Having a background in Marketing I began to research and I found a letter written by Bob Doman to the parents of children with Down syndrome, A Down Syndrome - Perspectives - A message to parents of Down Syndrome Children”, Journal of The NACD Foundation, 2000, Volume 13, No. 1. Bob used words like "unlimited potential" and I became interested because no one was using that terminology when they talked about Sam.

We started with NACD when Sam was 18 months old and we are still with them today. I wish I could say that Sam's journey got easier with NACD but with Sam being Sam, he threw in a lot of curve balls.  Sam's feeding issues became dysphagia, a late swallow (probably associated with the brain injury) which required us to thicken liquids.  After repeated swallow studies Sam finally proved he could bring his tongue back, close his mouth and not lose an airway which eliminated the need for midface extension and delayed talk on a trach or feeding tube.

Sam's ASD closed on it's own right before his scheduled open heart surgery at 3 years old. Hallelujah, but Sam's list of challenges continued. Due to Sam's brain injury we had additional delays in speech and crawling/walking.  Sam did begin to walk at the age of 3 1/2 years old and actually at that age we had surpassed with NACD's help all of what was predicted that Sam would accomplish in his life time. He was speaking some words, he could read and proved his reading ability by handing words to us that we asked for. He was walking and he was beginning to get better control of his right side.  He was fully potty trained even through the night by the age of 2. He still had a crooked smile which he continues to have to this day but the prediction of where he would get to had been shattered and the idea of unlimited potential was feasible again.

Sam's speech was still very delayed and after having tubes put in his ears to eliminate any chance of fluid, fighting for a fair hearing evaluation and jumping through insurance hoops Sam was diagnosed with bi-lateral conductive hearing loss and received a BAHA bone conduction hearing aid.  Due to Sam's extensive sensory issues (probably also brain injury related) we had the hearing aid secured to a baseball hat and Ellen Doman promised me that if he could hear he would wear it...and she was right. Sam's speech began to finally develop at the age of 7 and we began to hear clearer speech, less non speech sounds and some grouping of words.  Sam's early reading success helped us work on his speech and he quickly learned chunked phrases, like "I want (fill in blank) please" and other phrases. Sam was also diagnosed with apraxia and aphasia and speech processing continues to be his biggest delay.

Sam's immune system and respiratory issues continued to challenge us and we made the decision to homeschool Sam after frequent hospital admissions due to attending public school. I didn't want to homeschool but I did want to protect Sam's health and I knew he wasn't learning much when he was sick all the time.  I was often reassured that Sam would grow out of his respiratory issues and although over the years we have had less hospitalizations we still struggle to keep Sam healthy in winter.  We have had good winters and bad, this last winter was one of the toughest in a long time.  Sam got sick with the H1N1 virus that was sweeping the country and causing children to be hospitalized with quite a few deaths occurring.  Sam got sick in August and continued to piggy back illnesses for 120+ days of winter.  His body became stressed from so much illness and he began to have auto immune reactions the worst being a severe acid reflux.  The acid reflux medication caused mouth ulcers and Sam lost 20+ lbs. before we were able to get him stable again. Sam does not react well to pharmaceuticals so the addition of an oscillating vest like those used for people with Cystic Fibrosis and the use of natural supplements has been helpful.

About the time we had Sam walking, running and going up and down steps in a beautiful cross pattern along with swimming laps and learning how to ride his bike we were hit with yet another challenge.  At age 9 Sam began to limp and after x-rays and numerous consults we were told Sam had hip dysplasia and Perthes in his left hip. Yep, that took the wind out of our sails again as we learned that this diagnosis would require multiple surgeries, a body brace for 7 weeks and one year of rehab.  After Sam's first surgery he began his rehab but suddenly stopped walking and refused to even transfer without narcotic pain medication.  The first surgery helped with the containment of the hip but he had no range of movement.  We travelled to Baltimore to seek further assistance with a Perthes specialist and after a lot of prayer we decided to have an external fixator put on Sam's left hip for 4 months and continue rehab to see how much ROM Sam could regain. The external fixator is a force to be reckoned with, it is a halo device that is external but pins go through the skin, muscle and bone in the hip and thigh to allow the hip to pull apart and reform in hopefully a better configuration. 4 months of daily pin care, exercises/stretches and trying to encourage Sam to move with this device hanging off his hip. The surgery was successful to allow Sam movement again. He is no longer using pain medication and can walk independently for short distances, does better using a walker for working his way throughout the house or short distances outside the home and uses the wheel chair for longer distances. Sam still has a significant leg length discrepancy and his ROM is still limited but for right now he can get around. The next step will be a total hip replacement or hip fusion.

Within a year's time Sam lost both of his grandfathers and his grandmother who was like his second mom. Sam and my Mom were a team, they loved and enjoyed each other and my Mom helped keep me sane as we went through the challenges of Sam's journey. She was my rock!! I miss them all more than I can ever express, but I know they would want me to push on.

So push on...we did.  When Sam was 9, before hip dysplasia and Perthes we did a Path Planning session at his birthday party.

PATH is a person centered planning approach. It builds community around the person with special needs.  Eventhough Sam was just 9 we wanted to get the family together to begin the process of thinking about Sam's future. We wanted everybody to help us think and brainstorm on what our hopes and dreams are for Sam's life. We have all heard the quotation "It takes a community to raise a child", in the case of special needs children this couldn't be more true. PATH is an 8 step process that begins with "The Dream". When Sam was born with Down syndrome we quickly put aside our hopes and dreams as we came to terms with his diagnosis. When he later suffered a brain injury it seemed those dreams were buried under a multiple medical diagnosis that was very bleak. Add in hearing loss, apraxia and aphasia and it was getting harder and harder to dream. Here is Sam's Dream step of the process.

Our dreams centered on Sam being happy and healthy. We thought about him living independently and what that might look like.  Working at J&H or taking care of the apartment buildings.  Driving or using transportation to get around, Special Olympics, friends, team sports, music, traveling, volunteering at church, jet skiing, college, swimming and a even a girl friend. We dreamed of an active, involved, fulfilling life for Sam.

We knew these dreams would change and develop over time and Sam would decide what he wanted or didn't want to do.  We had hope...again!

Since this planning Sam was diagnosed with hip dysplasia and Perthes which would further change the plans but we weren't giving up.  Hmmm...that is the key...never giving up, no matter what life throws at you.

So, now Sam is going to be 15 years old in December and where are we at?

 This year Sam began to volunteer for Horizon Hospice the organization that worked with us as my Dad went through the hospice process. Sam is a flower arranger and he and I work as a team.  We go to Trader Joe's every Wednesday morning to pick up the flowers they discard. We drive back to the Horizon Hospice offices, unload and take the bouquets apart, throwing out the bad flowers and making new arrangements with the good flowers for the patients and their families. Sam helps me with the pick up, taking the bouquets apart, filling the containers with water, clipping the stems and delivering the flowers to the nurse/chaplain pick up area.


Sam participated in Special Olympics swimming until his second and third hip surgery. Now he swims to rehab and stretch his hip instead of competing.

This summer Sam began to work at J&H Heating two days a week for a few hours each time.  His job coach from Balance Inc. takes him and works with him to learn and complete his job.  Each time he is paid after he finishes and is allowed to spend his money on something he would like.  Right now Sam is pretty interested in food and will order a salad each time he gets paid but we hope to expand his choices.  The service and installation techs at J&H often fill buckets with miscellaneous parts from the jobs they are working on.  Sam receives those buckets and sorts the various PVC pieces, fittings, screws and miscellaneous brackets so that they can be put back into the service department inventory. We will expand his job to include cleaning the office and helping to wash and maintain the company's fleet of trucks.

Sam is still homeschooled so I continue to work with him on reading, writing, math and learning about things that interest him.  I am also finishing up his catechism lessons so that by next year he can get confirmed and begin doing some volunteering at our church. Sam gets together with friends and he is currently attending the summer recreation program sponsored by our Balance program for the month of July each week day afternoon.  After he completes that we will be headed on a road trip to Michigan for a train ride into Canada, sight seeing, swimming, bon fires and having fun.

But we aren't stopping fact, we are just getting started.  Another area we need to focus on is independent living.  Yep, that is a scary one and probably the most difficult to embark on. When we originally did Sam's Path Planning we brainstormed that he would live in an apartment with another person with a physical disability or a shared housing situation. Over the years I have watched Sam choose to become more independent and I have also watched him work caregivers to do the things he can do on his own. I began to show Sam pictures of small homes and always asked him the same question.  "Sam, could you see yourself living here?" He would usually look through the photographs and then turn to me and say "No, Sam stay home."  I wasn't sure if he didn't think he could do it or what might be holding him back.  One evening as I was browsing pictures of small homes I came across one that caught my attention.  I began to research further and found pictures of this unique little home that was set in a wooded area, just like the back portion of our lot. As I read more I learned it was manufactured in Wisconsin and it arrived fully furnished in two pieces, that would be really convenient. I printed out the pictures and showed them to Sam.  He looked through them once, twice and then a third time. He broke into a big crooked smile and said "Uh Mama...that's Sam's house!"

You could have knocked me over with a feather. Each and every time Sam sees the pictures he lets me know it is his house. I began to think about how much Sam could learn and experience with the simple separation of our house from his but still having the benefit of being close by, keeping him safe. I presented the idea to Jeff who like me was now dreaming of the possibility and how beneficial it would be for Sam.  Our worries and concerns are the same but we continue to plan and move forward. Even if Sam did not choose to live in the house long term, we could sell it and move it and the experience he would have gained will carry over to any living situation he may choose. This house opens up a whole new world to Sam. I presented the idea to Ellen Doman our NACD evaluator and she loved it. I asked the question that I knew she could answer better than anyone, "Can he do it Ellen?" Her answer "150% YES!" We have a lot of work, planning and research ahead of us. Here is the house Sam has decided is his house.

 The house from outside.

The screenporch.

Going into the living area.
The living/kitchen area.

The bedroom and bathroom.

 Our NACD programs now focus around independence and building a daily life for Sam.  So much to think about so much I could worry about but I am going to keep moving forward, one day at a time, one step at a time.

I know Jeff is a visual kind of guy so I knew he would want to see it in person.  This weekend for our anniversary I am surprising Jeff with a stay in this very home on a resort called Canoe Bay in Chetek WI.  This way he will be able to see it, experience it, ask questions and get comfortable with it. We also plan to go on a fishing trip, enjoy a tour of the resort's gardens (since the deer ate Jeff's garden) and enjoy some hiking and relaxing together.

I will be setting up meetings to figure out funding, how our state funds work when Sam becomes an adult, what services and help is provided.  I will be researching nanny cams, security systems, a service dog, remote lock refrigerator (Hee Hee, on my wish list), a communication system between our house and Sam's, convection cooktops....and the list goes on and on.

Each day I look at Sam differently. I am changing my home, my schedule and everything we do to work towards his independence goal.  Some days I am good and other days the reality of all of it catches up with me, so I read over a post I wrote during one of my more challenging days to keep me moving forward and to keep dreaming.

"Deep breath...I will allow Sam to make mistakes in order to learn, grow, experience and achieve independence. I will step away so he can move forward. I will love and listen but not take over and further disable. I will stop re-teaching and start expecting...MORE...compliance, understanding and achievement. I will not give up, give in or accept defeat...we will fight, we will problem solve, we will work together to move forward sometimes by our own strength and gumption...but always, in all ways through faith & hope. I have watched him physically grow and now will celebrate as he figures our exactly who he is, what he wants, how he needs to think, do, interact and succeed in his life, in his way.  I knew all of this raising Ben & Danielle but Sam has always asked more of me, required more from me. He asks me to feel more, to love more and he changed my every thought and outlook on life and all it entails. I see difference as typical, individuality as a necessity, challenge as growth, love as unconditional and potential as unlimited. Thank you God for giving me Sam who will always teach me more than I will ever teach him! LIVE LIFE GOOD!!"


  1. I had no idea how many issues Sam had at such a fragile, young age. You an inspiration to me, Sue! My oldest son has autism, we've had are share of challenges, but life is good and he loves his job. Hearing your stories make me smile and think of what a great job you are doing!

    1. Thank you, we need to inspire each other! Enjoy your journey!

  2. I had no idea how many issues Sam had at such a fragile, young age. You an inspiration to me, Sue! My oldest son has autism, we've had are share of challenges, but life is good and he loves his job. Hearing your stories make me smile and think of what a great job you are doing!

  3. Happy to read about the plans for your sons future. The idea of the cabin house on your property sounds wonder for both you and your son.

    1. So much to think about and so much to plan for but so very, very excited too!

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  5. I have read many blogs but never came across such a well written blog.Thanks for posting.

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