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!

NACD Evaluation

Hi, blog friends. Sam's NACD re-evaluation is tomorrow and due to hip/pain issues we will be doing a Skype eval. When we have to do telephone or skype evaluations I normally tape different areas for Sam's evaluator Ellen Doman and send them to her privately through the Flipshare system. However, Flipshare's server is down and I need to borrow my blog space to get the videos to Ellen. These are videos of Sam's reading, writing, math, chores, swimming and speech. I have already sent her videos regarding Sam's gait, use of the walker and issues that are showing due to his hip issue. My comments are directed toward Ellen but feel free to browse the videos.

Hey Ellen, this video shows Sam doing math on the white board. I use the white board with magnets, math notebook, Kidcalc on Ipad, everyday math and the calculator to work with Sam on math. He is beginning to remember math facts and his number identification has improved. He now likes to identify numbers in his environment. He is doing better with counting on and his sight quantity identification is improving if he is focused on it. Sam loves to circle the correct answer or use the bingo blotter to select the right answer in his notebook.

The next video is Sam reading first about quipmunks...aka chipmunks. The first book is from the Discovering My World Series. The single line of larger text works great for Sam and causes him no frustration, when the text amount increases the frustration increases as you will see when I bring out the Welcome Series book from Seed to Dandelion. Articulation begins to drop off but he is much more open to working or taking more time to pronounce a word correctly. Previously when I would try to have him re-read a word to get the better articulation he would shut down. He still tries to skip unknown words with an unidentified utterance hoping I will accept it and not question him but I am getting better at listening for this and can usually tell the words he does not know and will just give him that word. His comprehension of what he has read is improving. His comprehension is good in games like treasure hunt but with books he sometimes likes to go into word identification mode and doesn't choose to process what he is reading but the Discovering My World books have decreased his frustration with reading so he is now working on the comprehension too.

This next video is of Sam using the new Simply Smarter app. This was his third time using the app and he does well with it but I do wonder if he intentionally likes to go back to one to hear the kids cheer more and sometimes I think he likes the buzzer for the wrong answer. The good thing is that he does like to do it so please let me know how often and for what duration I should use it per day. Should I encourage as I did later in the video to get him to work for a higher score or have him work it through on his own?

The next video is Sam working on his writing. Sam uses the TVTeacher.com along with my new favorite app by Injini, Write My Name. This app allows me to put in pictures and create my own word cards or sentences to go with the picture. If you put it in watercolor mode as seen in the video Sam is able to see how far off he is from the letter it doesn't just snap it into perfect letters. Due to Sam's hip issues he of course is not in good writing posture but his letters are looking better and better. I hope to use this app in conjunction with his fun unit studies and the books he is reading. I hope the app soon offers a link to Google images for easy loading of misc. images that can relate to the unit studies or books. In the second video I ask him to write his name freehand without dots or tracing. He often writes the letter S backwards and will sometimes write the m upside down...oh the joy of cross dominance.

The next video will give you an idea of how he is doing with the word identification on the 4th 100 of the 1,000 most commonly used words in the English language.

The next video is Sam gathering his ingredients and supplies for breakfast. We are now working on putting the toast in the toaster, cracking eggs and buttering bread. Slower process due to the issues with the hip. In this video you can see how he will not weight bear while standing, uses the counter if not using the walker, the use and struggles with the walker regarding movement and manipulation around the kitchen. I would love to increase the steps but Sam is usually asking to lay down after getting the ingredients and supplies. I pushed to see if it was behavior or need and he sat down on the floor and then laid down on his stomach so I think at this point he needs to lie down. On some mornings the gathering is not possible because Sam does not have enough movement. I go day by day and see what each morning brings us.

The next couple of videos will allow you to see how well Sam is swimming. He is so happy in the pool and his movement is fabulous. He will compete in his first Special Olympics swim meet on Sunday.

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

Homeschooling With Sam!!

I didn't go into homeschooling because it is something I always wanted to do...it wasn't my passion. Sam had medical issues and immune system issues that made attending school very difficult. So after much pushing Ellen Doman, our NACD evaluator finally convinced me I could do it. First hurdle completed.

But then came the hurdle of Sam and I working together. This was more of a wall than a hurdle...and it was a really big wall. Sam is a great guy if you let him do what he wants to do and what he likes to do. Academics were not on Sam's top 20 list of things to do. Sam's inherent personality is pleasant but when asked to do something his response is simply "NO". Now let's take a "NO" boy and add in a mother that is not passionate about homeschooling and things can get ugly quickly.

I was comfortable going through the areas of Sam's NACD program that had to do with movement and I even quickly embraced flashcards...mainly because Sam liked them. But the academics presented so many difficulties for both Sam and I.

When I started homeschooling Sam was non-verbal. I found it really hard to continue to talk to, show, demonstrate things to a child that couldn't tell me if he understood any part of what I was saying. I had to rely on Sam's eyes, did he have that "I'm with you" look or was he somewhere far away. I had to rely on Sam's actions, was he moving toward me or away from me. Often times Sam would just move away. But that movement was communication...what you're doing doesn't interest me.

Another issue for me was when I thought about schooling I tended to refer to my public schooling experience. So I tried to create that in my home. Big mistake!!! Sam has never liked worksheets, he never has liked to sit at a table (unless he is eating) which now as I reflect back could have been an early indication of his hip issues. He is a hands on, make it fun and interesting type of guy. Oh yeah, and remember my auditory channel doesn't work all that well so I'm pretty much a visual kind of guy.

But as much as I failed in my early years of homeschooling...it really wasn't failure...because I was learning how to work with Sam. He was showing me what was going to work and what wasn't going to work.

Now add in Sam's hearing issues and the puzzle of working with Sam becomes even more complicated. Sam didn't respond to questions appropriately. Hmmm let me refer back to my school days. Teacher asks question, student responds inappropriately...teacher assumes the student doesn't know the answer. That would normally be the case...but then along comes Sam. Sam's auditory processing has been a struggle, add a hearing issue and the struggle becomes more intense. For the first 6 years of Sam's life, before he got his hearing aid, he attempted to guess at what people were saying. He maybe picked up on the last couple of words in a sentence but often his ability to hear and then understand was pretty much hit n miss. Now along with the hearing issue which affected his receptive speech abilities, Sam also struggled with expressive speech. Sam often knows an answer but can't pull out the right word or any word for that matter. I figured this out when NACD asked me to use word banks with stories and suddenly by glancing at the words Sam's ability to answer correctly went up significantly.

Now add in Sam's health and physical issues and Sam quickly becomes a very interesting child to educate. But if you have followed my blog you already know...I'm not one to back away from a challenge. We recently went to our NACD evaluation and I was thrilled that Sam's auditory processing was at a five but I also knew that it meant Ellen would check his dominance. I have always felt that Sam was cross dominant like his brother Ben since he exhibited many of the same struggles in reading and writing. Sam and Ellen quickly confirmed my suspicions. Yee Ha, another challenge. My signature for my email previously read, Sue Mayer, Mom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Hip Dysplasia & Perthes or as I like to say "Yada, Yada, Yada". It was my way of saying that Sam's labels do not define who Sam is...but I just couldn't add another one, so instead I changed my signature to Sue Mayer, Mom to Sam (10) who is genuine, unique and perfectly "Sam". I like that better.

My homeschooling over the years has become scheduled but not rigid. I changed out paper for white boards and magnets until Sam showed me he was ready for paper again. I have dealt with behavior issues, including complete non-compliance, hiding program items, tears, temper tantrums, choosing time out and an intentional lack of focus. I have struggled with my own demons of procrastination, lack of interest, lack of energy...just plain lacking. I am guilty of trying to find the perfect curriculum only to find that Sam will lead the pace, Sam will determine the interest and the curriculum that works for him will have to be tailored to him. I have tried the approach of "it's my way or the highway"...Sam quickly chose the highway.

And all along Sam was trying to tell me, show me, demonstrate to me that I needed to follow his lead...I needed to listen to him...I needed to understand him. If you would have asked me two years ago how Sam is doing with math, I would have told you it is non-existent and there is not enough medication in the world for me to tackle that subject with him. I bought the coolest manipulatives in the world and watched him hide them, shove them down a hole to the basement, feed them to the dog and throw them in the garbage. Sam hated numbers, he didn't want to count, he didn't want to recognize that a number was a quantity...he drew a line in the sand and dared me each and every day to cross it. But I just kept crossing that line. I tried new things, I tried old things, I used videos, sand, chalk, clay, magnets but each and every day we counted something, we tried something and gradually the light came on and Sam began to embrace this math concept. It's still slow but we are making progress...we didn't give up.

It isn't until I have a day like I did a couple of weeks ago that I finally realize the progress we have made. My love for and interaction with NACD often shows me the superstar kids. The ones that began speaking in full sentences when they were toddlers, the boys and girls that are having complete conversations by the time they are 7, the boys that are playing in Little League and competing on teams with their peers. I am happy for each of them but at the same time my heart still hurts for Sam.

And then he surprises me. The other week Sam and I were both sick. Now in the past Sam would have been happy to lay in bed and watch TV all day, he would have complained...no he would have staged a revolt if I suggested we do any program. But this time, Sam felt better before I did and as I lay in bed trying to get rid of a fever Sam pulled my blanket down and said "Mom, come here...come here now!" I just wanted to curl up in a little ball with my warm blankets around me and sleep but I've never been able to ignore Sam. We walked into our parlor where Sam now sleeps and I thought we were going to snuggle and watch a movie but Sam had different plans. Sam handed me his handwriting sheets and his DVD and said "Mom, Sam make better B's". You could have knocked me over with a feather. I put in the DVD and Sam said "Thank you Mom, Bye now". I walked out of the room thinking "Who was that child", maybe my fever is high enough that I'm hallucinating. I crawled back in bed only to be awakened a few moments later by Sam with more letters he felt he needed to work on. When he was done with his letters he called me again asking for his BrainPop movies. I was now sure my fever was getting the best of me. After his movie Sam was back in my room, pulling on my covers and demanding me to go with him. I shuffled through the front room and kitchen and followed him into the laundry room. Sam said, "Mom, Sam fold". As I got the clothes out of the dryer Sam laid out his Flip N Fold on the living room floor. I piled the laundry next to him and he told me to "Go bed, Mom". I was happy to comply.

A short time later Sam was back and wanting to do his words on PowerPoint. I began to say out loud "Who are you and what have you done with my child?" When he showed up with his math notebook I was sure my child had been abducted by aliens. At noon Sam plopped his gluten free bread and the peanut butter and jelly on to my bed. He came within inches of my face and said "Mom, sandwich please". I dragged myself out of bed yet again, shuffled to the kitchen and began to make his lunch. Sam suddenly whistled and said "Mom, listen", I said "Okay, I'm listening". Sam said "cow, dog, horse", "now you say". I began to chuckle, my little man, my dear, sweet, precious little man was now giving me sequences. I replied "cow, dog, horse". Sam smiled and said "Good job". I handed him his lunch, he smiled, said his prayer and then yelled "Everyone eating!" I walked back to my room, crawled into bed, folded my hands and thanked God for showing me just how far we have come.

"The difficulties you meet will resolve themselves as you advance. Proceed, and light will dawn, and shine with increasing clearness on your path."
Jim Rohn

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

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

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

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

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

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

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

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

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

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

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

So much beauty to admire and inspire!!

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

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

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

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

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

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

The waterfall was gorgeous and the sound was comforting.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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