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!

You Just Have To Love Him!

Soooo, we are over 8 weeks post surgery and although Sam is not mobile, as in walking, we are still having fun. Sam had a little set back when his surgical incision began to look infected, instead we found out he was having a reaction to catgut (I know you're saying what the blazes is catgut??). Well it's time for your surgical lesson of the day. Catgut is a tough cord made from the intestines of certain animals particularly sheep and used for surgical sutures along with strings for violins, tennis rackets and other instruments. So now you know.

It appears that Sam's body doesn't like catgut, go figure, what exactly does Sam's body like....there's the million dollar question. After a few consults it was decided that Sam's incision looks good enough to begin PT/OT in the pool next week. Our Family Support program was wonderful enough to give us some passes for the taxi service and my back thanks them as that saves me from a couple of transfers on each trip. After Sam got out of his brace he didn't really move his left leg and he could not sit up. Now 2 weeks later things have changed....

There is nothing better than playing a little balloon badminton with your favorite sister (we won't remind Danielle that she is his only sister) (love the outfit Danielle, are you aware we live in Wisconsin, you know the frozen tundra)?

Look at that smile and form. Also a shout out of thanks to the Raines family from Fort Worth Texas. They are responsible for Sam sporting the TCU shirt "Go Frogs". Now before all my Wisconsin friends get up in arms....no one sent him a Badger shirt, so no complaining.

As you know...or maybe it's sneaking up on you...Valentines Day is right around the corner. Sam will be exchanging Valentines with his class mates so we had work to do. First a brief consult with Buddy on his thoughts for the coolest Valentines and treats.

Alright got it...then we had to decorate the Valentine box. I like to make sure Sam is able to help with projects soooooo......stickers (NO) tactile issues, cutting (NO) Mom will have to handle that, Valentines is all about hearts so I cut a bunch of hearts out of paper, had Sam apply the glue (not as bad of tactile issues as stickers) I pick my battles, and then let Sam apply them on top of each other, around the corners, over the top edge (you knew he would try it) and if I took a picture of the bottom of the box, yep they are there too. It's his box and I think he did an awesome job.

I added his name so everyone would know it was his box. Kinda funny story, I was cutting the letters and started with the "a" because I had a small piece of paper. Sam looked at it and said "No, Mom", "S", so of course I cut out the "m" next...so who has the more difficult personality??Sam looked at it sighed, shook his head and said "Mom" "S" and then drew one on the table with his finger. I said "Oh, "S" I get it". He said "Yes, Ssssue!" I cut out the "S" and laid them on the box "maS", he said "No" but then tilted his head to the right and looked at the letters from right to left and said "Okay". Yep, he's mine!

So, now it was on to putting the monkey covers on the suckers. Yep, more fine motor work...just don't tell Sam because he thought it was fun and did all 24 without complaining. It was fun to watch him pick a sucker out of the box and then slowly work to open the bottom of the cover and push the sucker in until it was perfect. He was so proud of each one he did and then handed them to me for the ribbon tying. I knew you would enjoy the photos..so here goes.

First the selection of the red or white monkey and the perfect sucker.

Then the opening of the cover. Just a note, it doesn't matter how much oral motor work I have done with Sam's tongue, fine motor work brings it out every time and yes we have told his speech therapists that he would be a great replacement for Gene Simmons from KISS or now better known for the TV show Family Jewels. Love that show!!!

Next we shove that sucker (oops maybe I should have used the word lollipop) in that cover.

Sometimes putting them upright, helps get those suckers (ooops lollipops) in easier.

Then a quick quality check to make sure everything looks perfect.

And finally the hand off to Mom with a smile!!! I told you that you have to love this kid!

Now it was Sam's turn to write his name on each Valentine, stuff the Valentine and cross the name off the list. Now before you get too excited....I should mention we only did 3-4 per night. Planning ahead is crucial with Sam projects.

I think he and Buddy did a great job picking out some fun hamster Valentines!!!!

Sam always had chores before his surgery so I didn't want to have him get out of practice. Now that he can sit up we brought the Flip N Fold, www.flipfold.com out again. For anyone who is tired of laundry...this is for you! Make it fun and have your kids do it.

If towels are your burden, no worries, the Flip n Fold can handle those too!

It's so much fun, let's do one more!!! Sam is available to come to your house and fold your laundry if you live in a warm climate with a pool...hey he's not a low maintenance kind of guy!

And here he is with his stack of laundry folded beautifully. A job well done! Now I know everybody has their own way of folding...honestly...even a Type A personality like me had to adapt and needed to learn to let go. Are the towels folded the way I have been doing them most of my life? No, does it matter in the grand scheme of life....NO. Another life lesson learned, oh and this type of understanding/adjustment applies to husbands helping with household chores too!!! Just trying to keep peace throughout the world. Today the laundry...tomorrow cleaning the whole house while making Mom a gourmet meal. What???? A girl can dream!!!!!

Sam has been working with his homebound teacher 2 hours a day. She is wonderful but in true Sam fashion he is pulling out every behavior in the book hoping one of them will make her go away. She hasn't given up and what I really like is she keeps pushing him and praising him for any effort. In case you haven't read my blog before, my boys are allergic to school, learning and basically showing anyone with an educational degree how smart they actually are. I know...I'm blessed. Anyway, I'm enjoying the 2 free hours a day to make a dinner or clean the house or let's be honest sit and relax!!! I even opened a book the other day. I am living the good life.

Today we skyped Sam into his music class, he loves seeing his class and himself on the computer screen. Here's a short video of them singing "Shake Your Wiggles Out".

Stay tuned because we are hoping next week we see Sam in a vertical position...in the pool...but him becoming comfortable with any amount of weight bearing...priceless!!!

Reflecting and Praying!

Wow, 2010 was an amazing and again challenging year. I'm pretty sure that God doesn't want me to get bored....honestly.....a little boredom would be appreciated. REALLY...I would be okay with that.

But when I look back on the past year I have so many positive things to reflect on. When a new year begins I always find myself looking back further than just that year, I tend to reflect on the progress I have seen through the years. This crazy journey I am on with my children requires me to always reflect on where we started and to appreciate just how far we have come. That reflection allows me to remain positive and focused as I start each new day.

Benjamin will turn 16 on January 23rd and he is hot on my case to set up his driver's test. Where did the time go?? I still look at Ben and see the little boy that felt the need to use his tools to take apart everything in my house. Ben was never happy until he had taken something apart, figured out how it worked and sometimes made it work better and other times just smashed it to bits. Hmmm, funny...some things never change. I was just looking at pictures on Facebook of his Rhino, the truck he bought when he was 14 that got rolled at J & H and his current love, the monster diesel that has caused the UPS man and I to see each other more than I thought possible. I used to get excited thinking someone sent something to me or something I ordered came in from Land's End but now I seem to only get packages from www.puredieselpower.com. Don't even get me started on the dating...still taking deep breaths to get through that.

Ben as a child always had unlimited energy and a never ending stream of questions which some felt was ADHD and that medication was a must. But I never went there...although the year I homeschooled him I was tempted. Instead my mind just kept telling me we had to help him learn how to use that energy productively and I had to come to terms with the fact that I was going to hear the word "Mom" a minimum of 1,000 times a day. I needed to learn how he learned, what worked and what didn't so I could help him and those that worked with him. I still chuckle to this day when I see Ben skip across a room because he is excited...it was always like a little release of stored energy. I have been negotiating with Ben since he was three and I often feel that he just gets better at it and I get....well, more tired. Ben and I have a point blank relationship. He has never held back in letting me know what he is thinking or how he is feeling...I just wish sometimes he would curb his impulsiveness and comments so we could have a productive conversation instead of an explosive one but I understand the need to let off some steam too...it's just part of having an intense personality. I have always preferred that his outbursts be with me and not at others...because I love him, I can forgive him and I know the outbursts are often due to his feeling challenged or misunderstood. I walk a fine line with Ben trying to help him advocate for himself and at the same time motivate him to try harder.

I look at Ben and remember the frustrated little boy and the long hours of homework as he struggled to focus and as his struggle with reading, writing and spelling threatened to destroy his self esteem. We have come so far. I rarely have to do homework with Ben, we still team study for exams and I sometimes help him organize larger projects but he is doing well and has maintained his ability to remain in the regular curriculum without LD or special ed help. He is a fighter and I am so very proud of him.

And then there is Danielle, my sanity child...my ray of sunshine. She has an innate gentleness and kindness about her. She has always shined bright even when the attention on her brothers seemed to be greater. I have to remind Jeff and myself that she is a gentle soul, unlike her brothers more powerful personalities and she requires gentle persuasion. In recent years she has come into her own, able to stand up to Ben and put him in his place while getting Sam to do as she asked within a count of 3. Danielle makes me laugh, she and I are kindred souls and enjoy spending time together....of course sometimes during our road trips we all need a little space but really...who wouldn't after being locked in a van together for 10-15 hours at a time. We pick on each other and we laugh a lot. She is simply an amazing personality and I know God sent her into my life to help me maintain some sort of balance. Ummm...good luck with that Danielle.

Danielle is my sports playing, Zumba queen. She is so much more coordinated than me and I know she is going to do great things in this world and continue to be happy. Jeff and her share a special relationship since he is the driver to most of her practices and games. Don't even get the two of them started on John Tesch...they are addicted to his radio show...I get to hear so many random pieces of wisdom. Danielle was an amazing baby and toddler and she just continues to grow and develop into a wonderful, dare I say...teenager. I love you Muttsy!

And Sammy...my amazing big guy. Oh, the lessons you have taught me through good times and bad. I still think about Sam on our road trip this summer climbing mountains, hiking for hours and never ever complaining that his hip hurt...but it probably did. This little trouper went on to learn how to ride his bike, I just watched the video the other night when I was feeling a little sad. He worked so hard to achieve that goal and took such pride in showing everyone what he had accomplished. As I watch the video I can't help but notice how stiff his left hip looks...didn't notice that when we were in the moment. And now as Sam is in his 5th week in a full body brace he continues to amaze me with his compliance and attitude. I would not be this great of a patient and yet he greets me every morning with a smile and a hug. We are quite the pair in the morning, him in his body brace and me struggling to bend over for a hug because my back is so stiff.

I am thankful for the amazing road trip we had this summer, its memories have helped me get through the rough times. As I look at the pictures I smile at the happy times and relive the adventures we had. God surely set that trip up knowing what the next couple of months would bring.

The other night I watched a video when Sam was 3 or 4 and he only made sounds that we hoped would some day turn into speech. Sam still struggles with speech but he has come so far. He has tons of words now and many phrases to address his needs. I still wait and long for conversational speech, active listening and appropriate responses but I am encouraged by the steady changes I am seeing.

In Sam's 10 years he has had more struggles than most of us will face in our lifetime but he never lets that get to him. He just continues on with a confidence and attitude that all of us should learn from.

Ben, Danielle and Sam have taught me to change because that's all I really have control over. I determine how I talk, act and feel and in kind that determines how my children talk and interact with me. Ben's difficult situations challenge me to treat him the way I would like to be treated without bringing in the emotion or negativity that so often can take over our interactions. Both Ben and Sam love attention, but Sam is teaching me the power of positive attention. He requires me to place more emphasis on the things done right than what he attempts and is unsuccessful at. If I get frustrated he is more than happy to follow suit and just shut down. I am a work in progress and if I am tired or anxious I struggle to maintain my composure but I try to remember the lessons Sam is so desperately trying to teach me. I love you big guy!

I have never been a person that made New Year's resolutions...I instead make daily resolutions. I resolve to treat my children with positive attention and to be open to their level of communication. I resolve to focus on the positive aspects of my life and count my blessings. I ask the Lord to guide me every moment of every day...I can't do this life alone. I have often had people tell me I'm an amazing Mom and they don't know how I do everything I do...but if I'm honest...I'm just a regular person that has been put into extraordinary situations and by the grace of God, we get through.

This year I hope to open my heart and mind in order to continue my efforts in building community around Sam. Sam and I have been together since day 1, during hospitalizations, medical crisis, homeschooling and home therapy and everything that has been required due to his medical and immune system issues. We have been through a lot and we enjoy each other and work well together but Sam needs to learn how to interact and work with others too.

This is an issue that is so hard for me.

I get anxious when I see someone interact with Sam and he gets frustrated because they don't understand him. I get anxious when Sam won't show his skills and abilities and I worry that a teacher or therapist will lower their expectations instead of figuring out how to work with Sam. I get anxious when I see another child ignore or treat Sam differently. I get anxious that someone will miss a subtle change in Sam that is a red flag for me that medically something is about to happen. I get anxious that Sam will be overloaded by too much sensory stimulation and his behavior will reflect that. I get anxious that a child may run into and bump Sam causing him to fall on his fragile hip that has just been rebuilt. I get anxious that someone may not recognize that Sam's behavior is a pain reaction and not Sam being stubborn or non compliant. I get anxious that both children and adults will talk less to Sam because he is difficult to understand or he doesn't always answer appropriately. I get anxious that someone may perceive Sam's ability as low due to his limited speech expression instead of giving him other ways to express himself appropriately. I get anxious that someone will misinterpret a hearing issue as a cognitive issue. I get anxious that Sam will get frustrated and shut down. I get anxious that Sam will withdraw and enter his own world.

I...just....get....anxious...

because I love this little boy with all that I am. I will end with something I found on a fellow blogger's site, thank you Debbie at Finding Normal, http://debbie61497.blogspot.com/:

WHEN

When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown

The Kindness of Strangers!

A while back I told everyone about a geography project Danielle and I came up with for Sam while he recuperates and we asked that people send Sam a letter or card and tell him about yourself and where you live. We would then use a combination of a globe and Google Earth to find them and learn more about their area while having fun and teaching Sam great geography lessons. Sam also got a talking globe as a Christmas present from his Aunts which makes this project even more fun.

Soooo, I wasn't sure what to expect...

And then...

the letters and cards began to come in...

Port Washington, WI with letters from children and friends of Possibility Playground

Show Low, AZ with a beautiful magazine showing pictures of Arizona

a post card from New Orleans, LA

a Christmas card and note from Middleboro, MA

a letter from Ringgold, GA

a letter from Butler, MO

a card and brownies from Guam

a post card from Peoria, AZ

a Christmas card and letter from Glenview, IL

pictures and a letter from Clinton, TN

a Christmas card and letter from Lincolnshire, IL

a Christmas card and letter from Port Washington, WI

a card and letter from Dixon, MO

a card from St. Louis, MO

a card from Kildeer, IL

a letter from Houston, TX

a card and letter from Ingleside, IL

another card from Ingleside, IL

a card from Saukville, WI

a card from Fredonia, WI

a card and ornament from Orlando, FL

a postcard from New York City, NY

a card from Germantown, WI

a funny letter from 3 dogs in Lake Bluff, IL

a funny Christmas card and stickers from Port Washington, WI

a Christmas card and picture from Cedarburg, WI

a post card from Toronto, Canada

a Christmas card from the Mississippi Gulf Coast

a post card of Lambeau Field in Green Bay, WI

a card from Port Washington, WI

a card and gift from Mequon, WI

a letter from Ras Tanura, Saudia Arabia

a letter and pictures from Cambridge, WI

a letter from Mundelein, IL

a funny card from N.R.H. Texas

a letter, calendar and sticker book from New Zealand

a card from Port Washington, WI

a post card from the Philippines

a post card of Graceland from Orlando, FL

a letter from Mundelein, IL

a post card from New Orleans, LA

a Christmas card from Fort Lauderdale, FL

a letter from Saint Thomas, MO

a Christmas card from Rochelle, IL

a Christmas card and note from Vanndale, AR

a Christmas card and letter from Fort Worth, TX

a Christmas card and note from San Mateo, CA

...and they continue to come in.

WOW...Sam and I are both amazed and touched by this outpouring of kindness. Spending 6 to 8 weeks in a body brace is made so much easier when you can look forward to bringing in the mail each day and seeing all the cards and letters...and this doesn't include our family Christmas cards of which over 80+ cards came in.

I continue to be inspired by the notes and letters and the sheer kindness of people who are taking time to write to Sam, a boy they have never met and me, a woman who writes about her life and journey on a blog that was started on a whim. When I started this blog it was partly therapeutic and partly an attempt to test my writing skills to see if I could pursue a career in writing. I never anticipated the response I would have from family, friends and strangers from around the globe that would touch my heart and keep me going, writing and sharing my thoughts, feelings and journey on a regular basis. God bless all of you for inspiring me.

Sam loves the postcards and pictures and he is a wee bit addicted to the singing cards. I want to share how we work with each letter/card/postcard. As they come in each day I share the joy of opening and seeing where they are from with Sam. I read each card and note and then add them to our file. Each day we bring out a card/letter and we look and talk about the card, we look at the return address and find it through Google Earth, then we locate it again on our regular globe and apply a raised dot. We watch the videos on Brain Pop Jr. regarding reading maps and geography and work on the projects there. We also review some common globe terms: equator, north pole, south pole, compass, northern hemisphere, southern hemipshere, continent, country, state, city, capitol, ocean, river, lake, mountains, deserts, longitude and latitude. We look to see how far the letter has come by measuring with our globe tape (660 miles per inch) and we talk about if Sam has ever been there. I work with Sam to help him read the letter and then we look at the pictures included or find pictures of the area on Google Earth or Google. We also try to figure out the weather in the area and compare it to ours. We are just starting to send return notes to those that have provided a return address. Sam is just starting to learn how to type so I help him type at least a couple words on each reply and then Sam signs his name. Added to this each day are our math exercises, a little writing, word review and teaching new words, computer games, therapeutic exercises and the Ipad.

Now...honestly...if we get all that done, it's a really good day and Sam was feeling good and open to learning. There are some days when Sam's interest is not there and we move on to something else or we have an abbreviated school day. With Sam's current situation it is even harder to figure out where he is at and don't think for a minute that Sam wouldn't play up his situation. It's a balancing act to figure out what is a medical issue and what is Sam trying to work his way out of something. This week my goal has been to limit the TV unless he wants to watch Brain Pop videos and to get him re-engaged in puzzles and games, reading and talking...basically learning. We have had good days and bad due to the coughing issues he continues to have and his inability to tell me if he has pain. So much with Sam feels like a guessing game and I hope and pray I am guessing correctly.

My back has added a new dimension into this journey also. I have two ruptured discs in my lower back and I had hoped by this point in my life they had fused themselves since my back issues began when I was in my 20's. My attempting to move and re-position Sam which I equate to moving 106 lbs. of jello is slowly taking it's toll. My morning back ache doesn't always go away and the tinges of severe back pain have been more frequent. 3 weeks in...only 3 to 5 more to go. Argh!!!

Praying that the Lord decides that my back going out at this point would not be such a great idea or a new twist in our journey that needs to be taken. I guess I could use this as leverage to get Jeff to go to church...always looking at my options.

Each day it is fun to re-read a letter and learn about the area the person lives in...kinda makes me want to plan the next road trip. Ahhh...I should probably hold off on that for a while, you know...get Sam through this first...but it doesn't hurt to dream. I have enjoyed seeing and learning about parts of the world I may never get to, sorry Helen and Debra...I'm thinking Guam might be a stretch for a road trip and dreaming about those I may want to travel to some day. I am touched by the kind letters from people of every age, even a gentleman in his 80's sent Sam a card and note...it just makes you feel like there is still a lot of good people in this world.

If you haven't joined the effort, please send a card/letter or postcard to Sam Mayer at 679 Kara Road, Grafton WI 53024. If possible write or type in a larger font and tell Sam about yourself and where you live. He loves pictures and please include your return address.

Thank you all and I hope God blessed your Christmas and will continue to bless your families in the new year!!!!

Waiting For Superman...My View!!

I was recently given the opportunity by K12* to attend the movie "Waiting For Superman". This movie has spurred a public uproar regarding the state of our public schools.

"Waiting for "Superman" is a powerful and courageous film. It shows that great schools come from great teachers. And it exposes the forces that deny children more of both.
Many problems plague our public education system and there is no single solution. But this much is clear: It's not the kids. It's not their parents. It's not their neighborhoods. It's an outdated bureaucratic system, the special interests that benefit from it, and the politicians who protect it. Children’s futures must not depend on the zip code where they live or whether they win the educational lottery." http://www.donewaiting.org/

Having attended public schools in Wisconsin and graduating from high school and college with honors my perception of school was always positive and I felt that I had received a solid and good education. I was surprised to learn:

"Despite spending more than $9 billion on public education every year, less than 40% of Wisconsin students are proficient in core subjects such as reading and math while nearly 20% of students end up dropping out." http://www.donewaiting.org/

I had good teachers, bad teachers and exceptional teachers. I never really thought that much about the curriculum or the administration, or the teacher's union because school was easy for me.

And then...

I was blessed with 3 children, 2 with learning differences. I prefer differences over disabilities because after having worked with my children for many years they have taught me that just because they learn differently it doesn't mean the way they learn is wrong or less, it's just simply different. But by working with my children, working with our school system and working with NACD families throughout our state, my perceptions of school/education have changed. I have the unique experience of having a child very similar to me that just flies through school, no worries, very few issues. I have a child that struggles with reading, writing and spelling and hates school but has gifts/strengths that continue to amaze me. I have a child that challenges me every step of the way to figure him out, work with him and generate that spark or interest that will encourage him to engage and learn.

The job of a teacher...a really great, exceptional teacher...is one of the hardest jobs in the world. They are to be commended for their devotion to children. Due to Sam's health/medical issues I have had to homeschool him for many years. Sam has taught me alot over these years and I wish I could say it was all positive. He has shown me my weaknesses, my issues and has challenged me each and every day to become better, to listen to him more, to get into his world and try to understand what matters to him, how he learns, what works, what doesn't and to never, ever give up. Having had that experience my perception of teachers has changed. I do what I do because Sam is my child, given to me by God and I love him to the depths of my soul. He is my passion and I will work with him, enjoy him and love and teach him because I believe in him and his potential.

Now how do I expect another individual, a teacher, a stranger to understand what it takes to help Sam learn??? They have 20 other kids in their class and they simply don't have the time it takes to figure Sam out. But, if I stand behind that line of thinking...then I have already given up on our schools and our teachers. If I look at a broader view and not my own little world, most families can't do what I do with Sam. Both parents need to work or they are a single mom/dad, individualized teaching programs cost money and the time commitment to teach a child like Sam is huge.

In the movie "Waiting For Superman" the five children followed were fairly typical and they were fighting for a good education, a chance to succeed...so can you see my dilemma? What if these children had learning issues or were in need of special education, those parts of our public school system were not discussed. One of the children followed was attending a private school and that is the route we chose to start Ben's education. Smaller classes, more individualized attention, more attention spent on strengths...life was good but not without it's problems. But then that school closed and Ben joined the ranks of the public school, the only other school in our area that would accept an ADHD, Dyslexic learner. I became the parent liaison for special needs families because I love helping other families but I also needed to enter the system, understand the system and make it work for Ben. Ben is in the regular curriculum with a 504 plan. Each year I send out an introduction of Ben to his new teachers and each year I wonder if this will be a good or bad year. Ben's success depends on many factors, if the 504 plan is followed, if the teacher uses both visual/auditory teaching methods, if the information is presented in a manner that engages Ben's mode of learning, if the teacher's presentation method holds enough intensity to spark Ben's interest, if the teacher can see past Ben's weaknesses and focus on his strengths, if the teacher is open to using different teaching methods. I know that's a lot of "if's" and that's just the start. Learning is a two way street. Ben's success also depends on Ben, if he gets enough sleep, if he decides to reign in his focus/attention issues, if he advocates for himself, if he works with a teacher that is trying to work with him, if he chooses to use his adaptive technology or guided study hall regularly, if he puts stronger interests aside and chooses to focus on his education, if he keeps his behavior in check and if he doesn't get too frustrated and chooses to give up.

If, if, if....and any one of those "if's" getting out of whack can mean a really long year of school. But the Ben's in our schools are the "think out of the box" kids, they are problem solvers, they learn to compensate better than other children, they are inventive and when their intrigue is sparked the sky is the limit. I believe these kids, the ones we say are Learning Disabled are probably the ones if worked with and given the chance to pursue their interests could change this world. Our schools spend a lot of time/effort on the honors, high honors kids and yet these are the kids like me that really didn't need all the help...school was easy. We liked school, we liked getting good grades and many of us have gone on to do great things.

But what about the other kids? The ones that struggle. In the movie they showed the time frame of President Bush signing the "No Child Left Behind" act. One of the scenes that struck me was when he said "You don't like testing, too bad, we have to test". Argh!!! Testing...I understand it's purpose but I often wonder how many kids are held back, challenged less, given up on because of testing. I have 2 children that test terribly. If I based my teaching/work with my children on their test scores they would never be doing the work they are now proficient in. I believe that observing a child is so much more powerful than a standardized test, but again that requires time and individual attention.

Another area that peaked my interest and always has is state spending per pupil for education. According to the donewaiting.org site the average spent per pupil in Wisconsin is $12,235. We have had both Ben and Sam on a home program through NACD (http://www.nacd.org/). Ben for a few years, Sam since he was 18 months old. This program has been the answer to our prayers. They look at Ben/Sam from head to toe and create a truly individualized complete program for them. Our program for Sam includes academics, physical therapy, occupational therapy, behavior, vision therapy, speech therapy, sound therapy, focus/attention therapy, auditory processing, daily life skills and any needed intervention that will help Sam continue to grow/learn and reach his full potential. I would not have made the gains with my boys without the help and support of NACD.

We were originally told by well meaning medical professionals that with Sam's multiple issues he would have difficulty walking, he would have difficulty being potty trained, eating & swallowing, and the most devastating he would probably have the cognitive ability of a 2-3 year old child. I got angry, I wanted to know where they got their crystal ball. How can you look at a child that has never been worked with, a child that has never been given a chance to show their strengths or abilities and determine what they will be like as an adult? What if that happened to all of us? What if when you were born your parents were told everything you wouldn't be able to do? Would they have given you the same opportunities or experiences you have had in your life or would it have changed the way they treated you? It was through faith, stubbornness and NACD that Sam surpassed his medical expectations. By the age of 3 Sam was fully potty trained, walking, reading and beginning to enjoy the process of learning. This program is working for Sam, we are getting through and Sam is enjoying learning.

And yet...

Our NACD program costs us $210.00 per month, just $2,520 per year in comparison to the school's $12,235. A program individualized to our child that supports and empowers us as parents to work with our children. Our family was fortunate enough to get Family Support and the State Waiver for Sam this year and for a short time they agreed to pick up the cost for Sam's NACD program. Other parents from our state began to pursue the same for their children but were turned down. I could have kept my mouth shut and thought of only my child but that's not right, that's not fair so I decided to rock the boat knowing that Sam's coverage would be jeopardized. I again placed faith and hope that our bureaucracy would choose to do what works, would listen to parents who believe in the program and can demonstrate through their children the success they have seen...I again placed hope that they would think about the child. But...unfortunately they let me down again, they pulled Sam's funding saying that unless NACD can provide peer reviewed research showing the benefit of their programs they could not fund it. How is NACD supposed to fund peer reviewed research on every type of diagnosis their program works with considering each of their programs are truly individualized to the child and get it published in reputable scientific journals?? NACD is spending their time working with kids and teaching parents how to work with their kids not spending that same precious time documenting and pushing paper work. Our government and our state seem to place a higher importance on paper work than working with our children. A well done IEP, Katie Beckett form, Family Support Application is what they seem to want, it’s all about the documentation and we have forgotten about the child. That well written piece of paper is not going to teach Sam or any child to read/write or learn. It is the people that work with them, their parents, their school, their therapists and it is providing those people with the needed support that is going to truly make a difference in Sam and other children's lives.

I do not know how to fix our schools? I have been concentrating on figuring out what will work with my children and sharing that information in the hope that it will benefit another child.

Hmmm...maybe Sam's challenge is his answer to the problem?? What if our politicians and school administration were challenged to do the same thing Sam requires of me...what if they acknowledged their weaknesses, issues and challenged themselves to become better, to listen more, to get into the child's world and try to understand what matters to them, how they learn, what works, what doesn't and to never, ever give up. Sam's answer is better than anything I could come up with. Thanks Sam!!

I do think the suggestions documented at http://www.donewaiting.org/ of:

1. Create more high quality schools. Because every kid in every neighborhood deserves access to a high quality school we must expand proven school models, such as high performing charter schools, and failing schools should be reformed or closed. Insist lawmakers back policies that allow for equal treatment of all schools, in terms of facilities and operating funding.
2. Demand an effective teacher in every classroom. Support polices aimed at recruiting, promoting, and retaining the best, most effective teachers based upon student results and treat them like a valued professionals, not widgets.
3. Support the Milwaukee Parental Choice program so that qualifying low-income students can attend any school of their choice as long as the accepting schools agree to accountability for public dollars with the same tests as public schools.
4. Put the needs of kids before the politics of special interests. http://www.donewaiting.org/

These are all a good start and would benefit every child. If we don't figure this out we are only hurting ourselves. We have all heard the phrase, "our children are our future". When will that become more than just a phrase?




*Like the parents in the film, Waiting for Superman, K12 believes that access to a quality education is one of the most important things we can give our children. K12 is the leader in online education for grades K – 12, with tuition-free, public school programs in more than half the States and D.C., as well as a private online school – the K12 International Academy – serving students across America and in more than 40 countries. Students in K12 schools get the best of both worlds: engaging, online curriculum along with award-winning books and hands-on materials, plus one-to-one attention from highly qualified teachers. All students receive an individualized learning plan, creating an educational program that is tailored to their learning style, pace, and needs.

Learn more by visiting K12.com or connecting with our community of parents and teacher on K12’s Facebook, Twitter, and Blog. Discover more about K12’s Wisconsin’s online public school option at WIVA.

If you cannot receive html emails, the links included in the boiler plate are:
“K12/K12.com” - http://bit.ly/fromWSFBlogO
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“WIVA” http://bit.ly/fromWFSBlogOWI

Getting Moving Again!

As I work through Sam's new diagnosis in my head and in my heart, it brings to the surface so many thoughts and feelings. I want to begin this post with another post from fellow blogger Pia at http://www.thecrackandthelight.com/.

Hello?

New teacher, or therapist, or doctor?

Is that you?

Oh hello…I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart. My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new.

This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

When I read Pia's post, it spoke volumes to me. Sam has been given so many labels and in all honesty there are probably a few more we could tag on. His medical history has not been an easy journey. But through it all....I am and remain Sam's mom and I will never guess what God's plan is for Sam. I have tried, but I have been proven wrong each time. My job here on earth with this wonderful little boy is to love him unconditionally, believe in his abilities and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what I do or how I work with Sam, when I do things for him instead of allowing him to do them on his own, when I buy into the labels he was given and allow them to determine the things he will not do, when I don't take the time to figure out how best to show, teach, and explain/work with Sam....I AM DISABLING HIM.

Do you hear what I'm saying...this is my internal battle with myself. So as Sam's doctor, therapist or teacher...now you know where I am coming from. I don't accept a minor hearing loss as okay, I don't accept teaching one form of communication at the expense of another okay, I won't accept the statement, "Sam will probably never be able to....." fill in the blank. Because if I do, if this is my belief...what chance...what hope does Sam have??? We will reap what we sow. God tells us that.

Give our kids a chance to show you...to teach you as they are teaching us. Don't ever give up on them, don't compromise and take the easy way out. What if Einstein, Walt Disney, Helen Keller, Charles Schwab, Nick Vujicic (http://www.attitudeisaltitude.com/) mothers would have given up on them...where would we and they be today? Before you talk to me about limitations, modifications, medication...look in the mirror...picture someone of authority, a professional saying this to you about your own child, a child you love and believe in with all your heart...and then come talk to me.

Praying for Patience Again!!!

I have often said that my children are desperately trying to teach me to slow down and to be patient and yet I still find myself in situations where I am fervently praying for additional patience. Tonight as I work with Ben on his preparation for final exams...I'm praying. We are currently working on Biology with Communications and World Studies looming in the background.

I think about how other parents are already in bed not even aware that final exams are coming up because their children don't require their help. I think about how easy school was for me the first time around and how much I am not enjoying it a second time. I wonder if Ben's teachers have any idea just how hard Ben works to get the grades he gets. Sigh...it doesn't seem fair, it doesn't seem right and yet I know this is the way it has to be. I wouldn't change anything about Ben...his determination is what gets us through when my own determination has long ago decided it's past my bedtime and I'm feeling done, our joking around about Dyslexic moments and laughing at what Dragon Naturally Speaking mis-writes from his dictation is what keeps us sane. Knowing when to push Ben to work beyond what he feels he is capable of and knowing when we are at a point of sheer frustration is a difficult tight rope to walk. Letting him vent to relieve the frustration but trying to keep him positive enough to go on and not taking any of those vents personally (although some are directed right at me) is a challenge I wouldn't wish on anyone. But the moments I live for is the soft "Thank you, Mom" almost whispered as I head back up stairs after a long night, watching Ben hop and skip across the room when he is at the verge of completing an assignment he thought was impossible for him, seeing the pride on Ben's face when he comes home to announce the grade on his exam, even if it is just a half a grade higher than he expected.

It is midnight and Ben and I have just finished the beginning preparation for his exams. I wish I could say that tomorrow night and the night after that will not be more of the same...but it will. Tonight was a good night, the yelling was at a minimum, we both kept our spirits up, Ben's focus although fluctuating at times allowed him to complete 4 chapters of dictation. Whew...this is not the school journey I imagined but I know Ben will be a wonderful, hard working, creative, industrious, problem solving, productive adult because the challenges of his education, the requirement to so often burn the midnight oil, the perseverance and "get it done" attitude he has had to have will only help to form the amazing adult he will become.

Good night Ben, I am more proud of you than words could ever convey.

Step 2 "Sensing the Goal" & Step 3 "Now"

The second step of the Path is "Sensing the Goal". The Dream is an expression of identity and orientation. It gives direction. However, the Dream is not the pathfinder's goal. The goal helps the pathfinder realize and deepen understanding of some of the values expressed in the dream. To describe the sense of success, the pathfinder uses the thinking tool of looking backward. The pathfinder vividly and concretely imagines that success has already happened and describes the changes that have resulted as if they are real.

Because this is a first Path for Sam, he is young and we really wanted the family, friends and supporters to join in and knowing that there will be many more path sessions for Sam we visualized what life would be like for Sam at age 19. In most cases you would look out 18 months to 5 years.

At age 19 Sam is in school but may be thinking about graduating and working full time at J&H. His job is established and he is working independently. He has graduated from his home program NACD which would mean he has achieved his neurodevelopmental goals. Sam is speaking and hearing clearly, he is able to express his wants and thoughts. He understands and handles his chores on his own in preparation of living on his own. He is caring for a pet and he is a member of the YMCA and working on his health and physical fitness. He has pride in his achievements and has an award or trophy for one of his accomplishments. He is involved in his church as an usher or volunteer. Of course I can't forget his brother's goal for him, he has his drivers license. Whew...that's a lot to complete in 10 years.

And yet, when I look at this step now I would add even more. I would add his various trips and travels to places that interest him. I would talk more about his circle of friends and their activities and outings. I would talk about what sports he's now involved in and the many activities or hobbies he enjoys which will probably include new toys, like a jetski or golf cart. I would add that he is happy, he feels connected to his community and he loves and cherishes his family and extended family.

This is a great deal of information to think about and reflect on, so Step 3 has us look at what Sam's situation looks like now. A snapshot of the present.

This is what Sam's snapshot/present day situation looks like now. He is homeschooled with assistance from NACD, http://www.nacd.org/. His abilities vary from Preschool to 2nd Grade. He is happy, his health continues to be a concern but is improving. Sam's immune system is becoming stronger with his diet and additional supplementation of Vitamin D, CoQ10, C and Zinc. He is always hungry and his diet and access to food must be monitored. He is talking more and more with the addition of his hearing aid and Speak supplment, http://www.speechnutrients.com/. It will take Sam another year to become fully comfortable with his hearing aid and his new way of hearing. He has learned how to scooter utilizing his weaker right side. His endurance is improving. Due to his homeschool situation and health issues he currently has few friends. Sam is currently best described as an "observer" instead of a "doer".

This gives us our starting point and really gives you an idea of how far we have to go to reach Sam's goal. Next we are on to Step 4-Identifying People to Enroll and Step 5-Recognizing Ways to Build Strength. But for now I need to build some strength by getting some sleep. I think I have given you a lot to think about and stay tuned for the remaining steps to Sam's path. This journey is going to get exciting!!!

Dr. Phil, Stay at Home Mom's versus Working Mom's

As I sat and watched this show, I kept thinking of better shows that could be featured with this type of concept. Such as Medical Personnel versus Special Needs Moms, Politicians versus Special Needs Moms, Testing Labs/Pregnancy Experts versus Special Needs Moms, Educational Experts versus Special Needs Moms, Parents of typical children versus Special Needs Moms, Unaware Family and Friends versus Special Needs Moms...I'm sure you're getting the idea.

Daily we all face challenges, difficult situations and at times we all feel the strain. As I thought about these shows I couldn't help but think about how each of these situations would help us to bring about awareness, answer questions and hopefully open up hearts and minds to rethinking a situation....or would it be like Dr. Phil's show where they firmly stated their views and opinions but wouldn't stop to listen or reflect, to grow or change.

I have had my challenges with medical personnel who told me my child's future as if they had some type of crystal ball that I didn't have access to. Medical personnel who questioned my gut feel on my child's hearing because they thought I wasn't dealing with the reality of his diagnosis of Down syndrome, brain injury and Apraxia. I have become increasingly angry with the media reports of further testing to help eliminate our children in the future, as if a 92% abortion rate isn't quite drastic enough. I have struggled with educational experts who have failed to understand that every child learns differently and when something isn't working it doesn't mean that the child can not learn but instead that we have not figured out how to teach them yet. I have gotten weary of explaining my child to others but even worse are those that think they know my child and everything he will not be able to do. I struggle with family members and friends that share their thoughts and ideas without spending more than 5 minutes at a time with my child and have never spent time alone with him, have never tried to work or live with him.

But then I look at my child...my son...a child God sent directly and perfectly to me. I know Sam is trying to teach me patience and how to be humble. I look into his eyes and I see a knowledge that only he has, as if he holds my heart, my purpose within him and I need only follow his direction and actions to be fulfilled. I often fail...but he never gives up on me. He remains constant, teaching me persistence and perseverance. When I have become frustrated with him and am at my wits end he tells me "He's sorry" even though it's my actions and perceptions that should really be apologized for. I have never wondered what I did wrong to get Sam but instead I have often asked God why he thought I deserved a child like Sam, a child that loves unconditionally, a child that gives so much more than he takes. I know Sam has so much to teach me, if I take the time to stop, listen, experience and learn. And it is that lesson that I wish I could share with the world.

Who am I to say that my views, thoughts and opinions are always right?? Sam has already demonstrated that's not true. I have been given the privilege of knowing and loving Sam and I always try to keep in mind that these other people do not have this same gift, this little person that changed me and works daily to create a better me. I think we all learn from adversity, from the struggle. We become the people we are because we have to choose how to deal with what we have no control over. I don't want to argue my viewpoint but instead give the world a chance, some time to get to know Sam. I know that if they open their hearts and their minds, like I did, they would have to reflect on who they are, what they are thinking and what they are doing. I love this quote, I think it sums up everything I've just said.

If you can find a path with no obstacles, it probably doesn't lead anywhere. ~Frank A. Clark

I Dream of High School Graduation!

Okay, maybe I should clarify...I've already made it through high school and even college but the graduation I am referring to is my oldest son's high school graduation.

I think I under estimated Ben's insightfulness when he was younger. Starting at the age of 5, Ben would end each school year, thanking his teachers and telling them he appreciated what they had taught him but he would not be coming back because he was going to start working. It's funny now that he is in high school, I am the one that would like to be making that same statement...thanking his teachers but letting them know that we're feeling done with school and Ben is just going to go to work. For me, getting Ben through school is work and here's why...

A. He would rather be working earning money than going to school.
B. The new school year means it is time to update Ben's letter of introduction to his new teachers and advise them of his 504 plan and what it means to be Dyslexic, ADHD and LD.
C. A new year means new teachers, new teaching styles, different methods of testing...trying to make it all work for Ben.
D. Each year I begin to monitor Ben's grades to see if he is staying engaged, working hard or requiring some motivation or incentive and then putting that plan into place.
E. Each year I try to keep the line of communication open between Ben and I so we can work together to figure out where the challenges are and how he needs to adjust and compensate.

Our school district and most of Ben's teachers have been wonderful to work with...but it is work. I have over the years figured out some things that really work well for Ben's situation. In the next few posts, I will describe those in detail.

The first one is taking the time to write a letter of introduction to Ben's teachers. Helping them to understand how Dyslexia affects Ben along with opening a line of communication has been crucial. A mistake a lot of parents make is assuming their teacher has been trained to work with their child's disability. Each of our children is different and a label doesn't tell a teacher what Ben's particular issues are. Here is Ben's intro. letter:

Subject: (Child's Full Name)

Dear Staff,

I wanted to take a moment to introduce Ben and our family. Ben will be a freshman this year. Ben attended St. John’s Lutheran Academy from 3 year preschool-6th grade. He was homeschooled most of his 4th grade year through a program from NACD (http://www.nacd.org/). He attended (Child's school) Middle School for the last two years.

A little history about Ben. Ben was born on (birthdate). Ben began speaking at a very early age and was talking about articulated dump trucks by the age of 2. He was extremely industrious, thoroughly enjoyed puzzles, legos and anything to do with construction equipment. Ben often built lego creations just by looking at the picture and could build them in 3 dimensions perfectly although he only saw a one dimensional picture. When I asked Ben how he was able to do that, he would look at me and say, “Don’t you see it, the back and the sides?”

Ben was fascinated by tools and began using power tools at the age of 3. By 5 he was driving a riding lawn mower, at age 7 he learned how to weld, at age 8 he was operating large construction equipment including an overhead crane. Ben began collecting his tools at the age of 4 when he decided he would rather have Home Depot gift cards instead of any toys or gift cards for toys. Ben now has one of the most comprehensive set of tools I have ever seen. Ben has been going to my husband’s shop, since he was 5 years old. He can’t manage to wake up for school but gets up without an alarm clock every Saturday at 5:30 a.m. to eat breakfast with the guys at the truck stop and then to go to work with his Dad. Ben takes apart old heating/air conditioning units and turns in the scrap for money. With this money Ben has been able to purchase his own dirt bike, a brand new Yamaha snowmobile for Christmas and has managed to put a good amount into his college fund. He continually purchases tools and his favorite gift card of choice to date is Snap On. Ben’s favorite Christmas gift was an equipment dolly.

We knew early on Ben was unique. We could walk into a room and when we left the amount of detail he could tell you about was astounding. He would ask his Grandma where things were if he saw something moved or different in her house, it sort of became a game. He could describe people and equipment down to the color of their shoe laces or the color of the paint scrape that was on the tire.

We thought school was going to be a breeze since Ben seemed extremely intelligent and willing to learn. Ben started at St. John’s in 3 year old preschool, he seemed to only observe and rarely participated. In 4 year preschool he began to tell his teacher when she did things differently than the year before and participated more readily but mainly in those areas that interested him. In Kindergarten they began to work with letters and reading, this is where we quickly picked up on a problem. Ben had difficulty blending words, writing anything and would get extremely frustrated when asked to do so. His teacher felt he would grow out of it, I felt differently.

At the age of 7, Ben was tested by a psychologist from Achievement Associates. It was then we learned that Ben was diagnosed Dyslexic, ADHD and Learning Disabled in Reading, Writing and Spelling. We chose to keep Ben in his private school because the school was willing to work with us, we wanted a Christian education for Ben, he would have a great deal of one on one attention due to a very small class size, the curriculum was extremely challenging (Core Knowledge Curriculum, www.coreknowledge.org), and the school would focus on his strengths instead of his weaknesses. I did a lot of research on Dyslexia, Ben had a tutor, and we attended many sessions and workshops on ways to help Ben with his learning issues including a 3D Learner Program in Florida. The first 4 years were very rough, a lot of peaks and valleys and unfortunately in 4th grade Ben’s disabilities overtook his abilities.

I pulled Ben from 4th grade and chose to homeschool him through the National Association of Childhood Development, http://www.nacd.org/. Along with Ben, we have a daughter Danielle who is 12 and our youngest son Sam who is 8 and has Down Syndrome, a brain injury, apraxia, dysphagia and bilateral conductive hearing loss. Sam has been on program with NACD since he was 18 months old. I will not say this was an easy year but it was definitely needed to help Ben. We worked on so many core areas of Ben’s neurodevelopmental profile. Ben’s visual processing was at an 8 to an emerging 9 but his auditory processing was at a 5, which is the equivalent of having a 5 year old in your 4th grade class. His coordination and fine motor skills required a great deal of work. He and I learned how to work together, how it was easier for him to be active while learning, we did spelling while riding bikes, history while digging a hole and bounced a ball while working on processing. We researched people with Dyslexia like Walt Disney and Charles Schwab and learned how despite their learning issues they succeeded in life. To bring up Ben’s reading level we did high intensity reading which for Ben meant we read Bronco Builder magazine, Caterpillar literature, John Deere literature and the history of the Yamaha Corporation. When Ben returned to school in the 4th quarter for testing to see if he could return the following year his teachers were amazed. They were sure we had medicated Ben, but we didn’t, although at times I was tempted. Ben returned to school with an increase of 2 years in his reading ability, his auditory processing at a 7, and his self esteem back in tack. Ben has done well over these last few years. We still have an occasional D or F in the course Ben decides he is not interested in and he still struggles significantly with writing and spelling. This has been an interesting journey for Ben and us as his parents. Ben is a very bright boy, he is going to do well in this world, but he needs help in learning how to work with his disabilities in reading, writing and spelling. He has always chosen to work on his issues with me at home because being in a small school there was no one else there like Ben and he didn’t want to stand out as being different. However, I have learned in working with Ben that he will choose what he wants or doesn’t want to do. We have purchased both Kurzweil and Dragon Naturally Speaking for Ben to use but I know he will have to decide if it is helpful to him or not therefore choosing if he will use it or not. Ben’s 7th grade school year went well but one of his teachers felt he would benefit from the LD program. I disagreed because I think Ben needs more challenge in order to stay focused, if the work is easier he tends to drop both his effort and attitude and his behavior can escalate. He has done well in most of his 8th grade classes with the occasional need to have us help him get refocused and engaged but his teachers have been great in letting me know when he seems to be dropping off.

Ben has taught me a great deal in how to work with him and his little brother. We are both nervous and excited about Ben coming to the High School. His self esteem is good right now and by far that is the hardest area to work on when it gets out of whack. I would ask that his teachers keep me in the loop on how he is doing, what he is excelling at and what he seems to be struggling with. We have also asked (child's counselor) to be Ben’s go to point when he is not understanding, struggling or requiring additional help. We are working on having him advocate for himself. He is a great kid but if he gets bored his behavior can take a turn. Ben will need to sit near the front of the class, not in the front row but limiting the distractions will be helpful. Because I have worked one on one with Ben I am more than happy to share my experiences with his new teachers. Please understand that Ben’s issues do not have to do with intelligence or his ability to understand what you are teaching, but instead deal with his ability to show what he has learned in a written form. I have included further information on Dyslexia to help you understand how it affects Ben.

Thank you for taking time to read this. Thank you for working with us to insure that Ben has a bright future and reaches his full potential. I have expressed many times that raising 3 children, 2 with learning disabilities was not the program I signed up for. But Ben, Danielle and Sam have taught me so much and I am enjoying each of their journeys which as you can imagine are each very different. Have a great school year and please stay in touch!

Sincerely,

Jeff & Sue Mayer

That's My Story and I'm Sticking To It!!!

Today's post is about a day in the life of a homeschooler. Sam slept in this morning after staying up way too late last night terrorizing his older brother which I permitted because I myself would have liked to terrorize that particular child.

Sam woke up happy enough, but began the "NO" tirade about the time I asked him to go get his clothes and get dressed. I offered him "time out" or "getting dressed", he chose getting dressed but not before beating up his poor socks and underwear. Oh, I knew I was in for a day. I thought "Hmmm, lets wake him up with some physical exercise, so we did the deep pressure on his legs and then marched around the room...or I might be more accurate if I say, I marched around the room. He proceeded to look at me like I was some type of alien from another planet.

Okay, so we went for a little breakfast with a few auditory sequences thrown in for good measure, however either Sam's hearing aid was faulty or more likely he had chosen to turn off the auditory channel. Yes, this was going to be quite a day. I thought I would help Sam turn that auditory channel back on with some functional directions which he just decided to repeat the last two words I said with little to no following of the direction. I jumped enthusiastically into reading on the magnifier his Level 3, Boxcar Kids book which after another threat of "time out" we were able to complete, however the comprehension piece...not quite there.

We completed a few more program elements and academic tasks before we headed out to take a walk. Sam didn't seem to want to interact much so I began to question if he was feeling okay. The outdoors is usually a great place to get him refocused.

We came back in to attempt some math. Now you have to understand that Sam has a love/hate relationship with numbers and math, okay let’s just say there is... no relationship. I brought out his dot cards but realized I must have missed a few when I grabbed them, so I left the room and when I returned two of the cards were ripped in pieces. I asked Sam, “What happened?”….are you ready…are you sure??? He looked at Buddy (our wonderful golden doodle) and said, “Naughty dog”. The nerve of this child but I did have to laugh. Our dog does tends to pull things out of the garbage that contained food when we are away and leaves a shredded mess on the floor, which of course causes me to say, “Buddy, naughty dog” and Sam helps me clean it up. But what do you think the chances are that Buddy would not shred but rip in pieces two cards??? Ooohhh, that boy!!

But tomorrow is another day and we will get up and try it all over again!!!!

Was the Sun Shining Just a Little Bit Brighter Today!!

Today was the first day of Sunday school. I know most parents send their children and never think twice, never get nervous or actually feel sick to their stomach. But most parents don't have a Sam. Most parents don't worry if their 8 year old child is going to go into a complete melt down upon entering the room, they don't worry about the infamous stop, drop and plop that many children with Down syndrome seem to excel at. They aren't worrying about how the other children will look at their child or if their child will be able to follow what the teacher is saying. Most parents don't have to worry if a teacher will know how to deal with their child's lack of communication or what to do when he utters his ever favorite word, "NO". Most parents are not fighting an internal battle of "is this a good idea or not, is he ready??" They don't have to worry if the teacher will be able to look past the disabilities and see and involve the child.

Sam began coming to church 8 years ago sitting in his car seat. As he got older we switched to a stroller because containment was still crucial. We brought books and snacks to help him make it through the hour or so (depending on Pastor's sermon that day). We slowly transitioned Sam to sitting with the rest of us. Sunday school and confirmation classes were the next hurdles.

But that's only what our church and the outside world saw. They didn't see us change Sam's diet to SCD so we could curb some of his behavior issues and help with his overall health. They didn't know that Sam was in that stroller for containment but also because it took him over 3 years to learn how to walk due to his brain injury. They don't realize that Sam is just beginning to hear correctly, after living with a hearing loss for many years. Most of the world doesn't know about Sam's NACD program or the hours of one on one input we have provided to help correct his issues with apraxia, his brain injury, his auditory processing and his behavior. No those things are not evident to the outside world.

But today....the sun was shining just a little bit brighter, the moon was in the right phase, the stars aligned perfectly. How do I know this...because today Sam walked into Sunday school and he listened, he participated and he walked out excited that he "Did it!" Now that doesn't mean he didn't feel the need to voice his ever favorite "NO" and that he didn't test the waters but with a little redirection...he did it.

If felt good to stand with the other parents as one of them. As for Sam's teacher, his helper, our pastor and our church family they have always fully embraced Sam as a member of our church. I don't forget for a moment the stories I have read about many churches indifference to children with special needs. I pray each day for my church, my pastor and my church family and I thank God that they have opened their hearts and their minds to allow a little boy with so many challenges to succeed, to accomplish what to most parents isn't even viewed as a hurdle.

It is days like this that we celebrate Sam. His proud smile and excited exclamation of "I did it" will live in my heart for a very long time. Thank you Lord!