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!

Praying, Thinking and Reflecting!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day 3 Road Trip, Down the Mountain and One Amazing Aquarium

Sorry for the break in blogging but I needed to get two children ready for high school. Yep, 2 in high school...how did that happen? I remember taking their first day of pre-school pictures like it was yesterday. Time is going by way too fast for me!!

Okay, back to the road trip. Well, once you go up a mountain you have to come down. Coming down a mountain with a wheel chair is about as much fun as going up. Instead of pushing, you are now pulling and let me tell you, walking down a mountain holding on to a wheel chair is probably the best workout for your buttocks that you can imagine. The trail was steep enough at times that Danielle or Brooke had to get in front of the wheel chair and walk backwards while hanging on as I pulled in the back. But we made it and got a few more great pictures of the scenery.

It's just so peaceful...unless of course you hit a bump with Sam and it hurt his hip or you didn't move fast enough for him. I'm not going to tell you that Sam made the trip up and down the mountain without complaining...we are talking about Sam here. But we all complain about aches and pains when hiking so we just took it in stride. There were no tears or muscle contractions which would indicate a major pain episode so we felt he did okay.

The girls began shedding clothes to stay cool and no, I did not join them in doing that. Sam continued to smile and give them directions. Yep, he would make a great supervisor.

At one point on the trail there was a large gathering of people because a female black bear had been sighted close to the trail. As much as we would have liked to stand around and try to see it Sam had other ideas. The heat was beginning to wear on him and his comfort level of sitting in the wheel chair on a bumpy path was at about it's limit.

Going down did seem much faster and easier than going up!

I am going to look back at these pictures and envy the heat when we start getting snow storms this winter. I just love our National Parks.

When we got to the bottom I asked Sam if he had fun. He gave me his usual answer "All done". I then asked the girls if they were going to hike another trail. For some reason they also felt "All done" for hiking. So we headed back to the cabin to shower and get ready to see the Ripley's Aquarium.

When we got back the girls decided to sit in the hot tub...sore muscles perhaps??? Sam laid down for a while and I took a much needed shower. We had a snack and headed to the Aquarium. After pulling the van into a parking structure that had such a low ceiling I kept ducking we finally parked and unloaded the wheel chair. We wheeled Sam up to the entrance, paid our $90.00 entrance fee which I felt was a lot and seriously hoped this was going to be worth it and walked in.

Sam's reaction quickly assured us that this was worth it.

This place is huge and many aquariums have the walk in glass tunnel but this one was big enough that it also had a moving sidewalk to get you through it.

And of course they had a rain forest and a.....waterfall.

Sam was fascinated by and loved to watch the sharks swim by.

And these were big sharks!!

There was so much to look at that keeping Sam engaged was not a problem.

Such beautiful and colorful displays of coral!

And so many sharks, really big sharks that you saw one wherever you looked.

Some of the fish seemed very comfortable just laying on the top of the tunnel, especially this sawfish that Sam was fascinated with.

I told Sam to look at the school of fish. Sam's reply, "No school no".

Sam loved to watch the shark's move their jaws and teeth, I of course was playing the Jaws theme song in my head and thankful that there was glass between me and the sharks.

Sam kept saying "Cool" and "Mom, oh no shark coming!"

I loved the jellyfish display. Sam knew what they were as soon as he saw them.

They had the coolest exotic fishes too. Both the white and the brown stone looking creatures above are actually fish.

I loved the lionfish.

A nightmare in the making were the Japanese spider crabs. These things were huge, like monstrous...they can have a leg span of 12 feet and weigh up to 41 lbs. For comparison I found this picture on the internet.

It's like something out of a horror film. In my mind, that's a big underwater spider and I don't like it.

The aquarium also had these really cool crawl through areas so that you could be right in the middle of the exhibit. Here are Danielle and Brooke in the middle of the penguin exhibit.

They also crawled into another fish tank area and we captured this photo.

Then we decided to get one more group pictures by the huge jaws. Love Sam's expression on this one!

But the highlight of the aquarium was when Sam saw the diver.

Sam's face just lit up, he put his hand to his cheek and was in total awe of Chris the diver. Chris swam with the stingrays as another person told us all about stingrays.

Sam couldn't take his eyes off of him and his smile was from ear to ear. It seemed that we were not the only one fascinated by the look on Sam's face. Chris began to look at and wave to Sam.

Sam was thrilled and then the magic moment happened. They each put their hands up to the glass. As I looked around, everyone who was watching was smiling. Chris's interaction with Sam and Sam's glowing face and huge smile touched everyone's heart.

A mountain and a moment like this, yep...this was definitely a great day!!

After stopping at the gift shop to of course buy Sam a teddy bear diver so he could remember Chris we headed back to the cabin.

It has become a tradition on our road trips to make a celebration meal of steak with Brooke's sauted onions and some crunchy asparagus. I make the steak and the girls take care of the rest of the meal. Brooke was so delighted with our meal that she even captured it in pictures.

Of course you can see who is first to sit down and start eating. Sam never misses food!

Mmmmm, yummy was Sam's favorite line for dinner and I had to agree. We then all decided to sit on the deck and let our food digest as we looked out on the beautiful Smoky Mountains.

Again Brooke captured some beautiful shots!!

This was one of my favorites while the sun was setting!

Always one to jump on an educational moment, I decided to read to the girls some history about the Smoky Mountains from one of my favorite travel books Frommer's National Parks With Kids.

Yep, you can imagine, they were thrilled but the teacher in me persisted. I read to them about the Cherokee's who originally owned this land or at least laid claim to it. I got their interest when I read that in contrast to European culture, women among the Cherokee were equal to men in their families. Mothers owned the family home. We also talked about what the Cherokees felt they needed to do to survive, how they were pressured to leave and the Trail of Tears. We ended with how the national park was finally bought. I asked questions to see if they were paying attention and they promptly raised their hands to answer them.

We all caught up on our reading.

When it got dark out the girls decided to take a walk. Part of me was thinking, are you crazy, it's dark and we are in the mountains. But I gave them a flashlight and figured they would soon come to the same realization. It took about 5 minutes for them to return and question me on what I was thinking, allowing them out in the dark where a wild animal could have gotten them...what kind of parent was I??? According to them they heard something growl and came running back, ah another lesson learned on their own.

The only wildlife I came across was on our back deck. We had a visitor.

Obviously this raccoon was a frequent visitor. He made himself right at home and we laughed as he fit his whole body through the hole in the garbage can lid...his tail and his two back legs were all you could see as he foraged through the garbage. Yummy!

The girls ended the day with a dip in the hot tub after they scared the raccoon away! What an amazing day. Good night everyone!!