An Overview of NACD and How They Work With Children With Down Syndrome.

Some of my loyal blog readers brought to my attention that I never finished my post on the NACD videos.  Well...life happened!  Now that life has stabilized a bit...let's get back to that.  To view my post on the first 5 videos click on this link.

As a refresher to get started on the next six videos here is a little information about NACD.  In my blog post I often refer to Sam's home program through NACD, and his evaluator, Ellen Doman. Sam has been on program with NACD since he was 18 months old. I originally found out about NACD as I was researching Down syndrome and brain injury and I came across a letter that Bob Doman (the founder of NACD) had written to parents of Down syndrome children. Bob's letter spoke to me because it was the first time I heard anyone say that a child with Down syndrome has an unlimited potential. I often wondered how the medical professionals I had met when Sam was a baby could give me such bleak predictions of his future when we hadn't even tried to work with Sam. As I researched further I appreciated the fact that their programs were individualized to the child and their family situation. I knew early on that Sam was not just dealing with Down syndrome, he also had a brain injury and other medical issues related to his respiratory/immune system and I was already questioning his hearing. I really needed someone to help me with Sam from head to toe. With the help of this amazing organization Sam exceeded the medical professionals opinions by the time he was 3 years old and at that point my husband and I could finally focus on Sam's unlimited potential.

In this video Bob talks about speech...whew...this is a big one for Sam.  When we think of speech we have to remember the two components, speech and language.  Speech is how you articulate and language is what you say.  Most children with Down syndrome struggle with language, Sam struggles with speech and language. When looking at speech you have to consider the auditory issues first, in Sam's case a bi-lateral conductive hearing loss was not helping his speech production.  He couldn't hear speech sounds well.  Structure and function is the next area to consider, this includes jaw placement, pallet size, congestion, size of tonsils, size of tongue, tongue movement, jaw strength, chewing and lip strength. Oh...where do I begin with Sam??  Basically, Sam had issues in all of these areas.  Sam's oral cavity was small, Sam's tongue was large (being able to touch your chest with your tongue is not a benefit for speech unfortunately), Sam did not know how to chew and he began life swallowing solids whole (a benefit when it comes to having to learn to swallow tablets, not such a great benefit in preventing choking, aspiration and producing good speech sounds), Sam had a ton of congestion which is why he also had respiratory/immune system issues (removing dairy was the first step), Sam's tonsils took up 70% of his airway uninfected so when he got sick he lost that airway which led to stopping breathing and oxygen deprivation/brain injury.  Sam had his tonsils and adenoids removed at 11 months and has had his adenoids shaved two more times. Infants tend to give big ole wet, open-mouth kisses, Sam  did this until the age of 4 years old, his lip strength was very weak.  Sucking on a straw, a puckered kiss and candle blowing were dreams we had and our NACD program assisted us in all of the areas described.

The next video deals with motor skills.  NACD feels there is a direct correlation between motor skills, cognitive function and efficiency of the central nervous system.  I can't express enough how important this area is.  Often times children with Down syndrome walk later and therapists don't always follow the developmental steps of tummy crawling, creeping, walking, running and jumping. In Sam's case Down syndrome probably caused low tone and his brain injury caused right side weakness similar to what you would see with a person that has had a stroke and caused a dysfunctional central nervous system. Sam could touch a hot surface and not realize it was hot until he was burned. Sam did not react to cold either. Sam would use his head to help him roll but he didn't try to crawl.  Sam could roll over his right arm and never realize it was in a bad position even risking dislocation. We had to start at the very beginning and in Sam's case this meant deep pressure, hot and cold compresses...basically letting the brain know that there was an arm and a leg on the right side and it needed to use them. From there we moved on to tummy time, cross pattern tummy crawling which meant two of us would move Sam's arms and legs for him to help his brain learn the pattern. Then we moved him to an incline surface to help facilitate forward movement with the patterning. Sam had been in 0-3 since he was 6 weeks old and at 18 months he was not tummy crawling, he was not moving beyond his rolling, after two weeks of our NACD program Sam was tummy crawling. The rest of the developmental steps took time as we assisted and strengthened Sam with the right side of his body and at 3 1/2 years old Sam began to walk independently, something we were told he may not be able to ever do.  We worked on his gait, his walk, his run and coming up and down stairs.  At 5 years Sam had a beautiful cross pattern and could walk, run and go up and down the stairs, however he never learned how to jump.  Possibly that was an indication of our future diagnosis of hip dysplasia and Perthes.  Those two diagnosis destroyed the beautiful gait we worked so hard to achieve but that foundation has given him a better chance at regaining the mobility he once had.

The next video deals with social development.  This was a major concern of mine in regards to Sam. I struggled with the concept of homeschooling and the perceived lack of socialization.  Hmmm...well let me tell you...I was wrong.  I had thought that if Sam was in a school environment he would learn to become social by watching the other kids.  A few problems with my thinking, Sam had an undiagnosed hearing issue, Sam's global development was that of a 2 year old in a class of 4-5 year olds and Sam had other neurological issues.  Let's be Sam for a minute in a classroom setting.  A teacher is up front talking of which Sam is only hearing bits and pieces (think of the teacher talking in Charlie Brown), children approach and ask questions that Sam may hear parts of but is unable to process the number of words they are using, when Sam doesn't respond they learn not to talk with him. Sam becomes isolated, unsure of what he is expected to do or how he is to respond...he begins to withdraw, stim more and becomes frustrated, acting out his frustration with negative behavior. Now change to one on one communication with Mom (someone who loves him and isn't going to give up).  First I had to enter his world, do things he did so he could see I was interested then we exchanged sounds and I added a speech sound, soon those exchanges became more frequent and the sounds became words. Aphasia and speech issues made this exchange, our communication, a slow and cumbersome task....but I wanted Sam to be social, to communicate.  Sam still struggles with back and forth communication but I don't think anyone who meets him would say he isn't social.  Sam loves to talk at people, we are working on talking with people...but all in all, not bad progress for a child we were told may never speak due to his brain injury, small oral cavity and large tongue.

The next video deals with one on one interaction. My life with Sam is based on one on one interaction because when you put Sam in a group he chooses to withdraw, he chooses to limit his frustration by not participating. I often wonder what Sam would be like if I hadn't spent the years I did working with him one on one....was it easy....no....crucial....yes.  Sam has spent most of his life being significantly behind his peers including his peers with Down syndrome due to his complicated neurological profile and sheer stubbornness, a very strong family trait, thankfully I was blessed with it too.  Sam is the kind of guy that doesn't really work at something unless he wants to or sees a reason to.  My son Ben was the same way, the difference...I could reason with Ben, we could talk about it and come to an agreement...not so much with Sam. With Sam's hearing issue, auditory processing level and neurological issues from a brain injury...he needed one on one more than most.  As Bob says when you work one on one you alter your approach as needed by how your child reacts...how does a teacher do this in a class of 10, 15, 20 or 30 all indicating very individual and different needs?  It is impossible.  My thinking with Sam was that we had a lot going on and if I had any hope of reaching him, teaching him, helping him reach a better potential he required good, strong, productive one on one.

The next video is about educational placement...a thought process I struggled with for years.  Considering so much of Sam's life was different than what other people had experienced...our NACD program was intense, Sam had a lot of therapies, doctors and doctor appointments I kinda wished...kinda hoped school was going to be easy.  Yeah, not so much. I just wanted the "easy button" in one area and instead my NACD evaluator was trying to convince me that the best placement for Sam would be homeschool. Ummm...not even remotely what I was thinking or wanting or willing to consider. I tried pre-school but Sam was sick more than he was in attendance. NACD's gentle suggestion was becoming a strong plea and I was beginning to listen.  I hated our hospital stays and it seemed we were becoming frequent flyers at Children's, a designation without any perks.  I kinda thought all the illness and ICU stays were God's way of changing my mind.  Soooo...I began to think about homeschooling and I hated the very thought of it but slowly, ever so slowly I was beginning to think outside the box and realize that for Sam with his respiratory/immune, hearing and auditory processing issues...it may be the optimum placement.  I took the jump...and it was the best thing I ever did.  Now I'm not going to tell you that each and every day I enjoy homeschooling Sam, if I am honest there are days I would pay that little yellow school bus to come and carry him away but in all honesty...this was the best thing for Sam and me (yes, I said me too). Sam returned to school when he was 10 and was placed in a kindergarten class to work on his speech and language, he was very popular since he was the biggest kid in class, but one month in and his diagnosis of hip dysplasia and Perthes came about and I decided it was another sign that Sam should return home.  The important thing that Bob stresses is that you need to look at your child as the unique individual that they are and figure out what is the optimum placement.  Half days, full days, public, private, typical classroom, special ed. classroom or homeschool and don't be afraid to try different placements. I did and it helped me figure out the right one for Sam. The route I took was not easy and is not for everyone...but it was the right one for Sam.

The next video is a discussion of Down syndrome and Autistic tendencies.  I agree with what Bob presents in this video but I also have an area that I will agree to disagree.  I wholeheartedly believe that any of our children with Down syndrome can have autistic tendencies, low processing which can create a rut where the child gets stuck.  Sam was stuck at a 3 in processing for what seemed like FOREVER! His behavior was stimmy and erratic and as a parent it would have been easy to throw in the towel and say "I give up".  He was at this level while in school and would often flap, play with his eyelashes, get too close to things and any number of other stimming behaviors when he was bored or lacked any kind of engagement. I'm sure over time he could have been given the label of autistic based on his behavior but Sam had focus when engaged, Sam could stay focused for short periods and he had some social interaction behaviors.  I have met other children with Down syndrome that did not have any focus, refused social interaction, had excessive stimming and have the label of Down syndrome and Autism.  I understand that any label is an umbrella of symptoms, Down syndrome can mean speech, hearing, tone, joint issues but each child is different and may not present with all these issues.  Autism describes an umbrella of symptoms too and yet each child is unique in their challenges. When a child's challenges become excessive, when they don't move forward as fast or far as other children even though they receive the same input a parent begins to sense that something else is wrong, something further is involved. Getting a multiple diagnosis is both a blessing and a curse.  As a parent you feel better knowing that your child has unique challenges other children may not have but it is also easy to give up, to feel hopeless to let their challenges become the focus.  When Sam received multiple diagnosis I had that sense of relief that he was different, more unique...but in my mind it just meant that we needed to be more creative, think further outside the box, question and research to figure out how to make things work for him. Having added a physical disability to the picture makes everything more difficult...but not impossible.  I am not going to tell a parent that their child does not have a multiple diagnosis but I will tell them what Bob is saying that everyone, no matter who or what, can function better.  I may not be able to get Sam into the super kid category but I will get his potential higher, he has already surpassed all medical expectations...for us the sky is the limit.

Because I Love Him...

(If you are receiving this via email update, click on the title and go directly to my webpage to view the videos at the end of this post, they do not transfer via email)

I'm often asked why I chose to homeschool Sam.  I can always respond accurately that it is because of his medical needs, low immune system and inability to fight infection with typical medications.  Most people are very comfortable with that response.  I can refer to both his home program and his critical care pulmonologist that requested that I homeschool Sam. I have people to back up that claim.

But the reasons that I homeschool Sam go much further than that.  I have friends that are teachers, aides and even some in administration.  I took time to train and become a parent liaison in our school district.  I respect the role of teachers, therapists, school psychologist and those in the special education area.  As in any organization there are great, dedicated people and then there are those that are not as passionate about their vocation.  The good comes with the bad. My personal experience in the school system was pretty good, nothing major went wrong but being a logical person and looking at class size, available resources and Sam's level of need I wondered if we could do more at home.

Jeff and I decided on the day that Sam was born that we would love him, enjoy him and work with him to the best of our abilities.  Funny thing...if you would have brought up homeschooling at that time...I would have said "NO WAY". As time went on and Sam had more and more health issues including a brain injury from oxygen deprivation, I realized that our abilities were going to be tested more than I could have imagined.  While in the ICU with Sam I was told he would probably not walk due to right side weakness, his speech would be limited or he may not talk at all and his cognitive abilities would be substantially reduced. All I could think about...was where did that doctor get his crystal ball??  This was an infant, a child that had not even been worked with...to me a child who's potential was unknown.  Because God knows me best he knew that was what I needed to hear because that was the push I needed to prove them wrong.  I'm stubborn and I often question that which I don't understand and don't even get me started on how I have questioned and tested the medical community in every aspect of Sam's journey.  That same questioning has rocked my faith but over the years as more challenges have presented themselves and I have gotten through I have learned trust, trust in that which I have no control over.  I am not strong enough to make it through the challenges in this life on my own, it is only by the grace of God that I continue on.  Trusting God has become easy but trusting anything on this earth is still a challenge for me.

Due to Sam's issues beyond Down syndrome we sought out help and expertise on how to work with Sam and help him reach his full potential.  NACD (www.nacd.org) has been a driving force and friend in our journey.  I started working with Sam and NACD when he was 18 months old.  Although Sam had been in the state's "Birth to Three" program since he was 6 weeks old...I just didn't feel it was enough.  Everything I researched and read about encouraged me about the brain's plasticity and ability to make new connections but the direct input and the amount was something I felt we needed to improve on. Studies showed that children receiving early intervention were doing better than those that had not but in my mind the percentage was still too low and Sam had more than just a few issues going on.  Sam's therapists were excellent but they only saw him once or twice a week for a short period of time.  Working with NACD allowed me to work with Sam every day and give the input he needed to re-learn how to use the right side of his body, to crawl, to walk, to run, to learn to read, to improve his processing, to work on his vision issues, to strengthen the areas that were weak...to help him grow and develop.

As I worked with Sam and saw things change I began to understand and feel the joy that comes with helping another person develop on a level that I had never experienced before.  I had taken for granted my other children's development and I realized that it isn't until a child can't do something, something fundamental to their development that you can either feel powerless or dig your heels in and work on it.  Sam and I bonded on a whole different level.  It wasn't just about doing program or working the muscles it was about building trust and forming a working, loving relationship. To see Sam crawl, walk and then run (things he was never expected to do) and know the hours of deep pressure, input into his muscles, work on his gait and balance that made that possible is an accomplishment like none other. To watch Sam read and know that I taught him how to read makes my heart smile. To see Sam accomplish a set of instructions and chores and know the steps that we had to go through to get there humbles me. To hear Sam speak, to hear him communicate and know the hours of practice we have put in, the hours of oral motor and endless attempts at conversation we have gone through is...priceless.

I remember when Sam was born, he was on oxygen for the first day or so and I wasn't able to hold him. As I sat in my hospital bed...I wondered...after learning his diagnosis of Down syndrome...would he look at me or would he look right past me? Would I see something in those eyes, a light, an indication of something or would he have a blank stare.  I knew nothing about Down syndrome and that lack of knowledge scared me.  But what I do remember is the moment they brought Sam to me and placed him in my arms. I turned him upright so we could look face to face and as I held him he looked directly into my eyes, directly into my soul. I could see that there was so much inside this little man, so much he wanted to share and tell me and I decided at that moment that he and I could do this. We were going to be okay...no matter what.

I'm glad I didn't have that crystal ball...the future would have overwhelmed me. As Sam and I worked together we learned how to work together, what works and what doesn't. I sometimes think as people read my blog they think that Sam is easy to work with, compliant and a child that looks forward to his program.  Well, you would be very, very wrong (I'm sure Ellen Doman will vouch for me on this).  Sam has fought through much of  his learning but has learned despite it. Often times children with Down syndrome are thought to be gentle, loving, happy but I'm sure most parents of children with Down syndrome and teachers and therapists that work with them will tell you they have a gold medal in being stubborn.  Sam was doubly blessed with a gold medal in being stubborn along with two parents that gave him stubborn as a genetic trait.  Sam has hid program elements, fed them to the dog, ripped them, thrown them away and scattered them on the floor too many times to mention.  Sam has yelled, cried, screamed, spit and thrown books to discourage reading.  Have we had behavioral items on program, yep...too often to mention.

Now don't get me wrong, Sam has the other traits of gentle, happy and loving...when he is doing something he wants to be doing.  Very much like his older brother Ben...Sam is not fond of school.  Ben and Sam liked the social aspect of school, seeing friends, being part of a group but that is pretty much the extent of it...oh yeah...lunch and riding the bus was fun too.  As for academics these two can make any teacher's day a nightmare.  Over the years I have figured out that each of them have very specific learning styles.  With some modification I could adapt Ben's to life in the public school, not without it's challenges, but it was doable.  Sam, so far has been a whole different challenge.

So much of Sam's learning is built on trust. He will try something or work on something because he loves me and he trusts me.  Sam loves to see me get excited when he learns something, acting excited and actually being excited are two very different things for Sam.  He can read acting and he may tolerate it for a while but he really wants to see true excitement.  It is a lot to ask of any teacher everyday.  Which leads me to another reason I homeschool. I have spent years trying to figure out the best ways to work with Sam and if I am honest...I'm still trying.  Some things I have figured out and can now run with, others are still a work in progress but all require a level of patience that even I find hard to maintain.  Sam is one child and I am working with him one on one and we struggle. I often read about and know children with special needs that are doing very well in school.  Many of them appear to have fairly good speech and have learned to adapt to the classroom setting.  In my day to day work with Sam I think he would either choose to withdraw, stim and learn nothing or fight and quickly wear down anyone who is working with him so that his behavior would become the main focus and learning would still not be occurring.  I also know that if Sam were to come across someone who didn't care, wasn't passionate about teaching, chose to see his behavior as the only problem it would be detrimental to his continuing to learn.  I have had my moments with Sam when I have wanted to give up, to give in to let someone else fail at this and be able to say "It's not my fault".  But that's where I come back to my commitment to Sam, maybe the reason God chose me to be Sam's mom. I pray...and we go on.

Sam's physical issues are another reason I homeschool.  Sam has limited mobility and he does need to recline at times to take pressure off his hip, not the best set up for a typical public school classroom.  Sam and I have figured out how to work together at a desk, in a recliner, laying down, inside, outside and in a body brace.  We got this.

But if you want my real answer as to why I homeschool Sam....it is because I love him.  Sometimes when a person is challenged or difficult or stubborn it just takes LOVE to get past all of it. I work hard with Sam because I love him, I believe in his abilities because I love him, I get past his behaviors because I love him, we figure out how to work together because no matter how many mistakes I make...he still loves me too.  Sometimes like the song says...all you need is love.

Here are some videos from our recent attempts at ramping up Sam's home program.  They are not the best of the best, I have always promised to be real on this blog, to show the good, the bad and the ugly...but no matter what...I LOVE THIS LITTLE BOY AND THANKFULLY HE LOVES ME TOO!

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

Challenges and Blessings, A Long Post To Catch Up!

Tonight I am tired, I am calm, I am humbled but most of all I am blessed. In the last two weeks we have had 6 doctor's appointments, including 4 trips to Children's Hospital. Add in 8 therapy appointments, another sick child, homeschooling, a good friend of Sam's having major surgery and the day to day things that we all face, dinners, laundry, house cleaning and oh yeah...sleep...seem to be kinda neglected. I didn't have time to return calls to friends, I didn't have time to update the blog, I didn't have time to work on Sam's next fun unit study on the human body or put his books on tape, I didn't have time to read my book for book club or work on the afghan I am making for my wonderful daughter and a lot of those things are what helps me to maintain my calm and balance. I just sorta floated through these 2 weeks, trying to stay on schedule, trying to maintain some semblance of balance...but some weeks you just trudge through. What I was amazed at...was that I didn't feel out of control, I didn't feel overwhelmed...I was tired but at peace. So often people will leave comments on my blog about me being a super mom but honestly I'm just a regular person put into some challenging circumstances and doing the best I can to make it through. I am often asked how I make it through...I have only one answer...through faith alone.

If I would have sat and thought about these two weeks and all that has transpired it would be so very easy to fall into depression, bouts of anxiety or wasted time worrying or asking why?? All the stressful stuff I put in God's hands and I look for the blessings...because they are always there....sometimes you just have to look harder than others.

We began with a follow up visit to Sam's orthopedic surgeon. Sam is walking less, putting himself in traction or laying down more and we seem to be sliding backwards instead of making forward progress. His x-ray didn't seem to show any new bone growth. Sam's surgery was in December and by this time his doctor would have hoped to see some progress made in regrowing Sam's missing ball for his hip socket. He couldn't tell by the x-ray why Sam was having more pain and discomfort so he asked us to do a CT scan. I was hoping that Sam could do this without sedation...hope is good but sometimes reality wins out. Sam laid down on the CT table after yelling at it a couple of times and hitting it, letting everyone know that he wasn't happy to be there. We then attempted to get him settled but in true Sam style every time I told him to keep his feet still...he had to move them...he just had to. I tried reverse psychology and told him to move them, hoping he would stay still but that backfired too. We left with a return trip scheduled for the next day for a sedated CT.

I drove away with a heavy sigh knowing that sedation isn't always easy on Sam but we would get through this too. We returned in the morning. I really liked our anesthesiologist. He asked me if there was anything I needed to tell him about Sam. I started my speech, "Well, you should be aware that Sam has upper airway issues, pristine lower airways, so no asthma, but scaly, narrow upper airways. He has a floppy airway, an extra esophageal fold, an anatomy anomaly of 3 bronchial tubes instead of 2. He tends to overreact to medications so less is more in Sam's case, he will go into a shallow breathing pattern when sedated, steroids make him manic so if intubation is needed he will come out of sedation manic and he may come out manic without them, if Sam begins to have respiratory issues vaponephrine is the drug of choice...but other than that he is an amazing little man and the love of my life." He looked at me and said "Wow, you are an amazing medical mom." I quickly replied "Well, he needs me to be." He continued to compliment me, something I don't really handle well because I don't feel amazing or remarkable, I feel as I often say like a regular person who has been put into difficult situations and is trying to do the best I can. I have my good days but don't even think for a moment that I don't have my bad ones too.

The anesthesiologist decided to ask the "NO" boy what fragrance of anesthesia he liked. I always lets them give it a shot in case Sam decides to answer with a yes, but each one was greeted with a strong "NO". He then looked at me and said "I'm guessing I'm going to get a NO on every thing." I told him his guess was correct and Sam knows that he is going to have to ingest or breathe in one of those and he simply doesn't want to have anything to do with that. He asked me about positioning Sam, I told him it would be best to let him sit up, have him sit behind him, bring the mask around, Sam will look to me for reassurance and I will tell him to take a deep breath and that everything is okay. If he is going to be laid down, than place a rolled blanket at the base of his neck in order to fully open his airway.

Sam again yelled at the CT table and let it know that he was not happy to see it but then he climbed on. I took off his shoes, the anesthesiologist sat behind Sam and as he brought the mask around Sam immediately looked to me with wide, panicked eyes. I smiled and told him he was alright, go ahead and take a deep breath and I am right here with you, I'm always here with you. Sam quickly drifted off to sleep and I left the room to let them finish with the CT scan. They wheeled Sam to the recovery area. Most kids with a short blast would have slept for about 5-10 minutes...45 minutes later Sam woke up as the nurse began to remove the leads on his chest. He popped up like a jack in the box and said "Mom, go home, eat." I told him to relax until we brought the table down and I offered him some water to drink. Now for the real test...I asked him "Sam, have I told you lately...", he answered immediately "I love you" and I told him "I love you too". "Let's go home and get something to eat."

We also visited the dentist and Sam's pulmonologist, she looked almost giddy as I told her Sam was being homeschooled. Sam's pulmonologist is extremely supportive of Sam being homeschooled because he gets sick less often and she isn't required to find the magic pill that will keep Sam from going into respiratory distress. Believe me, we have tried many and I don't think she will ever forget when I brought Sam in to see his pediatrician after he had taken a preventative steroid and inhaled medication. Sam was fully manic, running around the office, pulling things off the wall, kicking, babbling incoherently...a completely different child. It took two of us to bring him there since he wouldn't keep his seat belt on and kept trying to escape from the car. I calmly explained to the pediatrician that if they wanted Sam to continue taking these medications I had his suitcase in the car and he could move in with him until they got this worked out. He quickly called Sam's pulmonologist as I waited to come up with a better plan.

Sam's dentist was wonderful again...see another blessing!! He got more done with Sam than he hoped and Sam gave him a hug when he left.

We finished all the home test kits but need to take Sam to the hospital for the lab work next week. Sam is obviously in pain since he won't walk far, asks for his wheelchair and puts himself into traction but Sam doesn't complain, he rarely cries and he faces each day with a smile. His frustration level is lower but with that said he continues to plug away at his NACD program and his academics. This is a blessing!! I remember a time when Sam would have been more than happy to throw a complete fit because he felt rushed or our time frames were shorter. It used to take me a long time just getting him interested in doing something. The level of intensity to teach Sam was often beyond my ability...but now he just jumped in, complained at times...but that wouldn't be Sam if he didn't complain and we completed as much as we could in between all the appointments.

So what is Sam working on??? He is writing his letters with www.thetvteacher.com and he absolutely loves this program. Sam was recently found to be cross dominant. NACD does not like to use the word dyslexic because it groups many different learning disabilities under one umbrella. I have always felt that Sam exhibited many of the same issues that Ben has so I wasn't surprised. With that said, like Ben...Sam will struggle with reading and writing. Sam is also working on his writing with his Ipad using the Pocket Phonics app and the Letter Writer app. Sam is writing notes to his Dad, brother and sister and he is writing sentences about pictures of him. Sam at this point is tracing dotted letters. He is not at the point of writing a requested letter freehand. When he tries we often see him starting in the wrong area or making the letter in the wrong direction.

I determine many of Sam's fun unit studies using www.brainpopjr.com. These are short animated videos that teach the educational elements covered in a 1st-3rd grade curriculum. If Sam is interested in the topic, he is engaged in the video. Here is Sam watching the BrainPop video Exercise. I look for eye contact, acknowledgement of auditory cues and his overall attention span.

When I see Sam is interested in a topic we go to the library for books. We look up videos on Netflix or www.cosmeo.com. We do projects related to the topic and we have fun expanding on what the BrainPop video covered. We are finishing animal classifications and habitats and will be working on the Human Body next.

Math has always been a challenge with Sam. For the longest time he didn't like to count, didn't like to identify numbers and certainly didn't want to work with numbers. I worked with a lot of manipulatives, finding math in everyday situations (like # of plates needed to set the table) (how many grapes do you want to eat?) (Give Buddy 3 treats, he only ate 2, how many are left?) You get the idea. We then used large manipulatives and magnets for beginning addition. Sam has a one to one correspondence issue. His finger moves faster than his brain. So using something large to move or the resistance of the magnet allowed his brain to catch up. We now use the Kid Calc app on the Ipad and we do what NACD refers to as modular math. Here is a sample page and a couple of videos showing Sam doing his math.

We have a lot of work to do on math yet but I'm encouraged that he is making progress. Wait...that's another blessing!

To begin working on Sam's cross dominance issue we are working on his visual processing and also eye exercises such as hitting a ball extended on a string. Sam likes to hit it forward and back but struggles when the ball goes from side to side. We also use targets for the nerf gun and have him play basketball.

I use a button schedule for Sam to help guide him through his day. I put the buttons in a container, shake them up and then have him choose it and match it to the activity. The buttons are also part of a work box system to help organize Sam's materials.

For reading I use a variety of books and approaches. Due to Sam's cross dominance he requires a larger font and fewer words on a page in order to be successful at reading. Soooo...that made finding the right books difficult. Sam likes Arthur chapter books but the font is smaller and I need to blow these up on a copier to make them work for Sam. I have found a couple series of Scholastic books that work very well for Sam. The first is Discovering My World which corresponds nicely with the BrainPop videos.

I like these books because they have a single line of text on each page in a large font. The pictures are large and well done. The topics are interesting and engaging without going overboard. The books are written at about a second-third grade level and they teach the child about 5 major points on each topic.

My next favorite is the Welcome Books. These books also have large and interesting photos. The text is large and there is only a couple of sentences on each page.

I was recently excited to find another line of books at our library that also correspond well with the BrainPop video series. These are Lightening Bolt books.

They have vivid pictures, large font and just a few sentences per page. These are great books to also work on speech/language as you talk about the pictures shown.

I also record books on tape for Sam, again I Sammy-ize it. I use Henry and Mudge books and change the characters to Sam and Buddy. This way I don't need to make up stories I can just use the Henry and Mudge stories but peak Sam's interest by bringing him into the story.

Sam's absolute favorite books continue to be...books about Sam, go figure. NACD refers to these as Experience Books. The Experience Book pictured below is part of a series of books I put together regarding Sam's road trip this summer. I also use this same format to put review books together for Sam. Right now I am working on his animal classification and habitat book, using a single page for each animal and 5 good points to know about that animal. These books require some computer savy but they are relatively inexpensive to put together. I use 65 lb. cover stock, print the pictures and text from my computer and then put the pages into 8x8 scrapbook filler sheets. You can often buy these in lots inexpensively on Ebay. I laminate the front and back cover, punch holes and secure the pages together with pipe cleaners. Sam loves to read books about himself and his adventures. These books also allow him to share with his friends and family details about his trips. He reads the text and then can talk about the pictures. It has always been difficult for Sam to share because of his delayed speech.

To check Sam's reading comprehension we often play a treasure hunt game. I use old containers and hide messages through out the house. In Sam's case the treasure hunt normally leads him to a favorite snack. We work on Sam's fine motor skills as he opens the different types of containers (jars, toothbrush holder, travel soap dish, travel shampoo bottle...). He then reads the clue and has to follow the instruction. I try not to assist with the reading beyond pointing to the words or having him read it a 2nd or 3rd time. Doing something like this makes reading go from word identification to something more functional. He needs to read, think about it, remember it and act on it. Some days our treasure hunt goes quickly and others he struggles with comprehension and memory but he always loves to play.

I tend to use a variety of grade level books to get ideas. Sam isn't a huge fan of worksheets so I try to incorporate the ideas in ways that are more Sam friendly. Here are some of the books I browse for ideas.

Here is one of the reading ideas from the book. They had a printed story and questions.

I then take this idea and Sammy-ize it. Yep, that's my technical terminology. So I take the same story but make it about Sam and Buddy, which Sam would rather read about. I write it out on a white board (much more Sam friendly than paper and it allows me to increase the text size and spacing) and I make the questions multiple choice, circle the answer and verbal. Even though Sam struggles with writing it doesn't mean he is unable to do this type of work, it just has to be modified to work for him. So here is Sam's version of the same thing.

Here is another example of working with the beginning sounds of words. The book showed this idea.

And then I Sammy-ize it by putting it on a white board and using magnets that Sam can move to complete the words. So it looks like this:

Sam loves magnets and we remove the task of writing by using the magnetic letters instead.

In spelling we work on spelling things that are important to Sam, like his name. I now use a magnetic picture holder to attach pictures of family members, our house (so Sam can do our address), and items he would like to buy at the store so he can work on a shopping list.

One of my favorite science books because of all the cool projects and the fact that I can usually Sammy-ize them is this one:

We also do fun unit study's like "From Grub to Ladybug". Sam liked watching his ladybugs go from a grub to a chrysalis to a ladybug. We have also done the same with butterflies and will work on creating and observing an ant farm next.

I picked up these kits on sale at Shopko, all of them were less than $5.00 each. The really cool part of Ladybug land was that the top was a magnifying glass so you could see the grubs and lady bugs up close and personal.

I struggled for a long time with art projects for Sam because of his sensory issues he didn't like anything that got him dirty or was sticky or required glue or a scissors. I now found a cool little device called the Crayola Cutter which allows Sam to cut much the same way he would use a pencil or marker. After much work on sensory issues Sam has now become comfortable with paint and play dough. He enjoys creating his own masterpieces, telling me what they are and then displaying them on the refrigerator. Here is Sam creating.

And here is Sam showing his wonderful creation called "Beautiful Waterfall".

Now we also do field trips. Since September we have gone to Discovery World museum in Milwaukee. Sam loved how the water entered into the aquarium area.

He also loved to watch the jellyfish and didn't seem to appreciate my asking him where SpongeBob and Patrick were?

He really liked the same exact area that Ben was always fascinated by...the pulley and lever area. He got a pretty good workout lifting himself up in this chair. Not easy with Sam's low tone.

He also liked the atomic reactor area. I was so excited to see him listen to the computer and press the button when they told him to. Listening is a skill we are still working on.

Sam's absolute favorite part was of course eating lunch at the top of the museum on the deck overlooking Milwaukee and Lake Michigan.

Through our family support program we have a membership to the Milwaukee County Zoo so Sam can see his beloved otters. Of all the animals at the zoo, Sam is fascinated by the otters. Considering how much they move, swim and dive...I can understand his fascination.

He could sit there all day if you let him...

but we had other things to see, animals to classify and habitats to check out. Another fun area for Sam was of course...the zoo train ride.

He smiled from ear to ear again on this ride.

Sam loved the seal and sea lion show.

The show is entertaining and they keep things moving which helps to keep Sam interested.

Sam took this picture, he might just be a budding photographer.

Our final stop was at the butterfly pavilion. Unfortunately by this time Sam's hip was beginning to hurt and we had to end our day, head out to the car and allow Sam about 15 minutes to stretch out in the back seat before he was able to sit upright, put on his seatbelt and head back home.

We also purchased season tickets through our homeschool group to see the theater productions put on by First Stage Children's Theater. Our first play was Seussical and Sam loved it.

So...in between the medical stuff we have been keeping busy. Another blessing that has come our way through our Family Support program is a respite provider hired through College Nannies and Tutors. A couple of weeks ago a wonderful UWM student named Makenzie began taking Sam out and about around the community to give both he and I a much needed break. The break allows me to prepare Sam's homeschool program, run errands or just relax and it allows Sam to engage and have fun with someone besides Mom. Makenzie is studying to be a school psychologist and loves spending time with children with special needs. Sam really likes Makenzie and always looks forward to when she is coming. They have gone to the playground, on a hike, bowling, playing basketball and swimming at the YMCA, to the library and enjoyed the Port Washington marina. Makenzie comes 3 days a week for about 3 hours each time. I am so thankful that our wonderful case manager arranged this for us and that College Nannies and Tutors was able to find a perfect match for Sam and our family.

Sooooo, I have to say again...yes we have challenges and more than I thought we ever would but we also have blessings and for that I am thankful. Just the fact that after so many years Sam is finally working with me and we are enjoying his journey in learning together...that is a huge blessing for both of us. For my friends with children with special needs I hope I have given you some ideas and please, please feel free to ask me questions. I enjoy hearing from everyone!!

A few years' experience will convince us that those things which at the time they happened we regarded as our greatest misfortunes have proved our greatest blessings.
George Mason

So Much To Blog...and So Little Time...Let's Talk About Hearing

Ahhhh, back for more therapy...that is what I consider my blog. I like to think that when I write I'm helping someone somewhere and I know that I'm working through a multitude of thoughts, worries and concerns that when put on paper don't seem as overwhelming to me.

As most of you know Sam has been in a whirlwind of medical appointments. One of those appointments was audiology. Sam has a mild bi-lateral conductive hearing loss which has contributed to his delayed speech and auditory processing issues. To read about Sam's journey to hearing, read here. Sam has a BAHA hearing aid which he wears on a baseball hat. Sam's hearing was re-checked and he still demonstrated a mild bi-lateral conductive hearing loss.

The BAHA has really helped to improve Sam's speech but it didn't have as much of an impact on listening, processing and communicating. Here's my theory, Sam didn't hear well so the process of listening was frustrating. He picked up as much as he could visually and became an excellent visual learner therefore turning off his auditory channel which didn't seem to function well anyway. With the BAHA he has selective listening but he is so used to not using his auditory channel that you really have to get his attention for him to activate listening and then to process what he is hearing. Sam likes to talk at you instead of with you. To get him to talk with you, you have to get his attention which means asking him to stop and listen. Unfortunately listening appears to be a lot of work and Sam will only do this for short spans of time. So we are working on helping him to expand this window of listening.

One area we work with is The Listening Program (TLP). TLP as stated in their information is a method that can facilitate profound change in beginning to experienced listeners, in those recovering from brain injury or dealing with sensory processing challenges to those who are seeking academic or career achievement.

Listening is a process that involves functional, emotional and psychological components. It relates to the function of our neuro and auditory physiology, and the motivation and desire to communicate. Listening is more than the passive act of hearing. It requires the ability to direct the ear and brain to work in harmony to perceive, discriminate, and process particular sounds, along with the desire to communicate.

Basically Sam's ears and brain are not always working in harmony. As I look through the list of symptoms of auditory processing problems I can pretty much check off each one as an issue for Sam.

• Has difficulty listening and paying attention. (Yep, that would be Sam and most of the males in my household.)
• Misunderstands spoken information, directions or questions. (Welcome to my world!)
• Frequently asks "huh?" or "what"? (Add that to the 1000 times he says Mom in a day.)
• Needs to have directions or information repeated. (Which can lead to taking an average task and adding 20 minutes.)
• Has poor auditory sequential memory (We are still at a 4)
• Is easily distracted by background noise (To Sam conversation is background noise not a chance to communicate) (To Sam the noises in the environment trump a human voice every time.)
• Finds some sounds uncomfortable or painful. (We did not see this until we added the FM system) (My voice appears to be painful.)
• Has trouble hearing similarities and differences in sounds. (Sam can tell you the sound of a letter if he see's it but can not always identify the letter if he hears the sound.)
• Has poor phonics skills for reading. (Don't even get me started...HELLO...there is a reason why we work on site word reading extensively or the boy would never be able to read)

TLP is a safe, effective, drug-free approach that helps improve brain function, reduce stress, and trains the brain in the auditory skills needed to effectively listen, learn, and communicate. It consists of 10 cd's which address full spectrum, sensory integration, speech and language and high spectrum.

TLP works on these related functions.

Zone 1-Sensory Integration (lower frequency sounds) which impact balance, rhythm, coordination, muscle tone, body awareness, sense of direction, laterality, right/left discrimination.

Zone 2-Speech and Language (mid and higher frequency sounds) which impact memory, concentration, attention, speech, language and vocal control.

Zone 3-High Spectrum (higher frequency sounds) which impact energy, intuition, ideas, ideals, spirituality, creativity and auditory cohesion.

With all of these benefits I do TLP along with Sam. I use a splice to allow him to be connected to his wireless or audio adapter and I use headphones. We both benefit from this activity.

TLP using a bone conduction headset is what helped us to identify Sam's hearing loss. He functioned better in communication after listening to TLP with the bone conduction headset. Now we use his BAHA as a direct input of TLP. We can do this with an audio adapter or his new wireless FM system. Here is what Sam's FM receiver looks like attached to his BAHA. For those wondering, that is one expensive hat, the BAHA cost around $6,500.00 and the receiver adds an additional $1,400.00.

The transmitter then gets connected to the cd player.

And Sam plays with his trucks in the sand while he listens to the 15 minute segments twice a day.

Sooooo, what do I notice in using TLP with Sam and for myself. I recently listened to a book on tape and honestly it was very difficult for me to listen and follow, I found myself having to go back and relisten a lot. I also have noticed that I struggle with background noise and staying in a conversation and if I'm completely honest I talk more than I listen. Since doing TLP I enjoy books on tape and don't feel the need to rewind, I think I listen better although I still love to talk (hence the blog) and I can stay with conversations better. You are never too old to improve your listening skills.

As for Sam, not as easy to determine but the window of listening seems to be increasing. We are still making progress in speech and listening and his sensory sensitivities have continued to decrease. He is trying to communicate more even picking up on conversations that normally he would have just shut out. TLP is yet another piece of the puzzle to help Sam communicate. I have learned on this journey that each piece gets us closer to the whole...so we continue on.

To learn more about TLP go to www.thelisteningprogram.com for a provider in your area. We purchased the program through our NACD program and share it with members of our Wisconsin chapter.

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?