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!

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

Sam Working Independently....One Step At A Time!

Yes, summer has finally reached Wisconsin however Sam's home program and schooling continue year round. While everyone else is celebrating the end of school, Sam and I celebrate moving some of our schooling outside. A change in environment can do wonders!! Sidewalk chalk can make math, a treasure hunt, and reading enjoyable again. Since Sam is with me 24/7 I often dream of Sam working independently on his school work. I dream of doing some housework on my own...quickly and without the constant repetition of each step we are working on. I think it's good to have dreams but with a child who is prone to stimming behavior and struggles with auditory processing...independent study will be a process in the making.

We have found some things Sam can do independently like build 100+ piece puzzles, build really cool structures with his trio block sets, play games on the Ipad, browse Ben's 4 wheeler and Bronco Builder magazines, play with play-doh, and before hip surgery play basketball and ride his bike. (STAY TUNED FOR WHAT I HOPE WILL BE AN EXCITING UPDATE ON SAM'S RETURN TO BIKING).

However, academically Sam usually requires one on one assistance. I think part of it is because he isn't as excited about his academics and he likes doing the easy thing...like not doing it. Even Ipad educational apps require one on one or he tends to just tap away until he gets the right answer...not really investing the time to think about it....unless of course Mom is sitting next to him requiring the thinking process to occur and you can imagine how popular that is.

Soooo I have to work with Sam's strengths to have any success. One of the best investments I have ever made for my homeschooling efforts is a triangular easel magnetic white board. I originally purchased it from one of my favorite stores The Learning Shop but I see it is manufactured by Copernicus Ed. It can be used on the table, floor, outside and in bed. Sam loves magnets and the white board is viewed by Sam more positively than paper or worksheets. I get my various magnets from The Learning Shop, I make some myself and I buy some from Ebay. To work on Sam's reading and comprehension I write sentences that he reads and then chooses the proper magnet indicated. This reading does not meet the resistance reading from a book does. Here is Sam working with me on this exercise.

Soooo...I decided to do a test run and see if he could do this activity independently. I am not a blogger or a parent that only shows the best of the best. I think we all learn from the process and I think it is important to show all aspects. I mean we all have to start somewhere. So here is Sam's first attempt on his own.

Not bad for a first attempt. You can see how things fall apart but I think we can expand on this.

Now another area that I had originally had Sam working on his own was writing with the TVTeacher.com videos. However in closer review I realized that Sam loves the videos but doesn't necessarily follow the instructions, she talks faster than Sam can process and write so I have begun to supervise the writing portions of the video. Here is what it looks like when he successfully listens to my auditory instructions. I do wish however that I could tell you he retains my instructions and can continue to write the letters on his own...but I haven't seen that yet.

Another area we have been working on is reinstating chores. Hmmmm....this was a challenge with the limited mobility due to hip surgery but here are some examples of what we came up with. Sam still loves to fold clothes with the Flip n Fold and he is still the best sock matcher in the greater Milwaukee area.

Sam also is the best of all 3 of my children in sorting and putting silverware away....

....while sitting of course!

I have also found him to be a wonderful glass putter away (yep that's a technical term)....while sitting of course!

My next idea was having him help me prepare the flower box on our deck. Either he's really intense about this or possibly he has found another way to stim. Shovel dirt, watch it drop, and repeat endlessly...or rake dirt one way and then back the other way and also repeat endlessly. Yep if it doesn't seem right it probably isn't and this chore thankfully...is a once a year chore. So I guess that stim won't be repeated for a while. Sorry Sam!

Another fun independent chore...playing ball with Buddy.

And they both look happy after this one!

Each day I'm encouraged by the steps Sam takes toward independence. Some days we seem to be moving ahead with gusto and then some days we just make it through and other days we take a few steps backward. But our progress is slow and steady and he and I work together through the good times and the bad. I never need to look very far for encouragement because if I stop to think for a just a moment about what Sam works through each and every day...the hip pain, the hearing issues, the processing issues, the fine and gross motor issues, the speech struggles and yet he continues on, he smiles, he laughs...he keeps on. What do I have to complain about??

All Play and No Work...I Don't Think So & The Amazing Ipad

If you read my last post you know Sam and I were chilling in Winneconne. With such a peaceful environment and no interruptions I just couldn't resist working on a few things with Sam. The first video shows a typical conversation between Sam and I. He's definitely talking more and getting better at staying on topic but active listening still eludes him.

You'll notice he begins the video with a beautiful 5 word sentence. However, we have worked with Sam on the "I want" sentence for a long time. It is a memorized block of information. As he goes further along you will see his spontaneous conversation drop to 1 to 3 words. He then attempts the word refrigerator which I don't get on the first try and ask him to repeat, he adds a few more syllables and points allowing me to figure out what he is saying. He then speaks something that we would normally think but not verbalize as he walks himself through getting the orange juice out of the refrigerator. This happens quite often with Sam as he replays the steps of what he needs to do out loud.

The bump on the head does not stop him from his mission. I was surprised he did not yell at the refrigerator and hit it for bumping him in the head, (yep, that happens alot). He will yell at and hit a chair, or a curb, or a wall that somehow jumps out in front of him and causes him some type of injury. I can remember when he tripped over Ben's shoe and went after the shoe and the owner with a vengeance. He did yell at the soda to stay, so I guess that made up for it.

Sam is not wearing his hearing aid in this sequence because it was hot and I was cleaning and changing the battery. He hears the siren and immediately decides it's a police car. He then switches the conversation to Daddy and pizza, Daddy at work, Daddy, McDonalds. Please understand Sam has an obsession with fast food restaurants that he likes to visit and have a bottle of water or diet soda, since he can't eat much at them. When you drive by he always tells you what restaurant he sees, usually can connect an appropriate food item and always tells you "Yummy". I am convinced that 90% of Sam's conversations center around food.

In Sam's next sentence he talks about his sister Danielle going to Erin's, no a movie. We then piece together that Danielle and Erin are going to a movie.

After this you will notice how Sam has to be stopped to listen, otherwise he will continue to talk at you. Do you want to even try to guess how often I hear the word "Mom" in a day, or how about in 5 minutes??

I ask Sam where he is which kind of throws him off, so he repeats what I say a common "Sam" reaction. He goes with house and then correctly tells me it's grandma's house so I introduce the word cottage to him. We then have a nice exchange about Aunt Wendy and the pool. He then trys to tell me that it's Wendy's turn to go on the slide but comes out with Yay Yay instead of Wendy, since that name isn't in his everyday vocabulary. Sam changes the conversation to a lifeguard which still keeps him in the pool conversation.

He then becomes distracted by a commercial, a common occurrence. Sam can sing 1-800-588-2300, E m p i r e, he will let you know when a Walmart commercial is on, he commonly sings the beginning songs to shows like ICarly, SpongeBob, 2 1/2 Men.

Sam also lives to knock on doors and have people tell him to "come in". Sam will say everyday that "It's good to be home". This started shortly after I began homeschooling him, I think it was God's way to provide daily encouragement for me. This is all pretty good for a child that was labelled non-verbal early on, made only noises and 1 speech sound and has a hearing impairment. We still have a long way to go but we are definitely making progress.

The next two videos show me working with Sam on various areas. Click on the links provided to view them, they just didn't seem to want to upload to blogger so we improvise. The first one begins with Sam's money identification skills. The white incline board you see is worth it's weight in gold to work with Sam. I bought it from the Learning Store. It is made by http://www.copernicused.com/, it is magnetic and a white board and Sam loves it. The magnets I am using are from my favorite magnet resource besides Ebay, http://www.dowlingmagnets.com/ they have everything magnetic.

Sam struggles a little with the next area which is phonics. Sam often confuses the letters d, b, p, q which as my older son informs me is all the same letter it just depends on which way you flip it. He will also say "was" when reading "saw", and yawns and repositions himself a lot when reading. These were all the same signs we saw with Ben when he was diagnosed Dyslexic or cross dominant. This could be yet another struggle Sam will face but in my life we only take it one day at a time so we are not going to dwell on that right now. Nah, I have enough to worry about already...right God???

The letter magnets are also from Dowling Magnets and the picture magnets are from the Learning Store. Sam then works on his reading and comprehension to match the appropriate magnet with each sentence.

From there we move on to the most amazing teaching tool I have purchased to date....the Ipad. Sam learned how to master the Ipad in about 5 minutes of use. Sam has fought me tooth and nail on math from Day 1. No way, no how, ain't doing it, not even trying until........the Kid Calc app. on the Ipad. Praise the Lord!!! You can decide what math facts to work on. Sam is shown doing addition and subtraction, numbers 1-5. I want to note that Sam was not at the top of his game while doing his math, but I think it is important to show Sam's good times and bad times. I don't try to catch the best of the best on video. I think it is important for people to see what it is really like to work with Sam. On this day he decided he liked the "bong" sound of the wrong answers. I knew what he was doing because I have worked with him on this app. I know he can do these but some times that "bong" sound is just calling his name. I love this app because it has built in intensity. It shows Sam a problem, he sees a manipulative to help him figure out and then he can choose from 4 answers. The problem is then reviewed and it reveals a portion of a picture. Sam continues on because he wants to see what the picture is and the next one and the next one. I have even caught him doing math without being asked...HALLELUJAH!!! Video link: http://s737.photobucket.com/albums/xx17/suelmayer/?action=view&current=2010-07-15091152.mp4

We use the free, yes that's right I said "F R E E" ABA flash cards to work on Sam's receptive language. He hears them and repeats them. There are a lot of flash card packs which include the following topics: zoo, eat, actions, alphabet, fruits & nuts, play, vehicles, vegetables, shapes, wear, instruments, sports, science, function and packs that ask questions about items. These packs show 3 items and then ask, "Find the item you would drive" when the child taps on the motorcycle, children cheer "YEAH, you did it" and it goes on to the next set. These cards are beautifully done, just the image, not a lot of background and words I haven't necessarily already covered with Sam. He's expanding his vocabulary.

Next you see him practicing his letter writing and spelling on iWriteWords. Love this app too! The sounds, the way it shows them how to make the letter and then the built in intensity of dropping the letters down the drain. Cool!

I had difficulty uploading videos to blogger so the two apps I just talked about got cut off. Here is the remainder of Sam working with his Ipad. Link for video: http://s737.photobucket.com/albums/xx17/suelmayer/?action=view&current=Sammy2trimmed.mp4

Sam then chooses Build a Word from Word World. This is a cute app that asks him to spell a word, push it together to form the item and then shake the Ipad for the next one.

Another favorite app is Keynote because I can take the PowerPoint presentations I made on my computer and load them on the Ipad making them fully portable. Can you feel the excitement??? This rocks. I don't have to re-enter everything again. I can also make new presentations on the go. Thank heavens, I got a degree in Marketing and Communications because so much of Sam's education relies on me to be creative, resourceful and innovative. Very much like a focus group, Sam lets me know when I've done a great presentation and when I need to head back to the drawing board and try again. I think he's a tougher critic than most!!

Sam works first on an Experience Book/stories about Sam and then works on the 300 list of the 1000 most commonly used words in the English language. In order to keep his attention we put photos of his family in between the words.

Sam's favorite games are Froggy Jump, DoodleJump, Labyrinth, Skee-ball, StuntCar, Dora, Diego Snow, Animatch and the ever favorite Monkey Divin.

Sam is so quick at Animatch that we had to go with another concentration game called Memory which uses both words and pictures. I love to use Doodle Buddy for quick scripting and written directions. No need to find the magnetic board or pen and worry about erasing. You can write on Doodle Buddy and erase with a shake of the Ipad. I also purchased Utalk teaching English. This app reviews many aspects of the English language and provides Sam with some great practice words, phrases, time and numbers. We tend to chuckle when we come across things like gent's bathroom instead of men's room and cheers. It has a lot of interactive games that Sam enjoys so it works for him. Another neat app to check out is Going Places which shows pictures and social stories for going to the hairdresser, mall, doctor, playground, grocery store and restaurant. It is FREE.

I will try to do another post showing Sam working on some of the other educational apps. and some new ones we are about to try.

Sam also likes to view all the photos we have loaded and he will practice his speech as he talks about them. Cool benefit I never even imagined. He can listen to music and watch movies from Netflix. We have loaded two of his favorite movies on the Ipad so he can view them without a Wifi connection. Sam loves "Like Mike" and "Wild Hogs". I can't even tell you how many DVD's I have purchased of those two that Sam has conveniently lost or wrecked. Now they are both on his Ipad for good. I just haven't shown him the video button but I'm sure he'll figure that out soon. Sam's Ipad has a protective case and because he likes it so much he takes very good care of it. In fact, we are going to be working on a behavioral issue since he seems a little territorial about the Ipad and he needs to share...especially with Mom.

I have my calendar on it, contacts and some of my own favorite games. The Ipad reduces Sam's stimming because he is more actively engaged, it removes the stimming in the car or when he is bored. It is a great incentive and motivator. Unlike some toys or electronics Sam really works on the Ipad apps, he doesn't jump from one to the next. He spends time on each one he goes on to... he is actively learning. The Ipad does not replace my teaching Sam one on one. We still need to generalize, show him, demonstrate in other ways so that his learning is not just keyed into the Ipad. I don't want him to know how to do math on an Ipad but not be able to count money, tell time, or realize that 2 apples plus 2 more apples is a total of 4 apples. On new apps or the math app I had to first sit with him, encourage, assist and let him see how to properly do the app. The cost of the Ipad seemed high to me but it is a computer with full computer capabilities along with wonderful portability. I...okay WE...LOVE THE IPAD!!!!

The Joy of Reading!

Sam learning to read was one of the highlights of our journey. Our NACD program had us start fast flashing pictures, then picture/word cards and finally just words. We started the process when Sam was 2 years old. Sam was non-verbal but he seemed to be attending to my fast flash portion of our program. I often told Sam's evaluator from NACD that if I had to fast flash "butterfly" one more time with intensity I would forever hate that creature. And yet....I will never forget the day...Sam was 3 years old...and I decided to see if Sam knew the cards we had been working on. I laid out 3 word cards in front of him and asked him if he could tell me which one was "butterfly". He picked it up and handed it to me. My mouth dropped open and my mind raced. Okay let's try....truck, television, toilet....(my mind was thinking he identified the word by the first letter). I asked for truck and he handed it to me. I tried 4 cards at a time and he still handed me the right one. That day we went through our whole stack of cards and Sam was able to identify each one. He was reading!!! I called my husband, my mom...anyone I could think of to tell them Sam was reading. We now work on the 1000 most commonly used words in the English language. Sam is working on the 300-400 range. I have learned that it is easier to put Sam's flashcards on PowerPoint with pictures of his family in between to help hold his attention. Sam loves to go through his word cards and as an added benefit for me...I no longer misplace or lose the cards. I have included a video at the end of this blog showing me fast flashing new words to Sam, Sam reviewing his old words and Sam reading from one of his many Experience Books. Experience books are books about Sam...I mean really who wouldn't love to read books about their own family, life and adventures. In my life and journey with Sam, it's all about the intensity, with intensity we have learning and we have progress.

Sam's learning to read gave me that needed boost to help raise my expectations for Sam. What I didn't know at the time was how important his reading would become to us. Sam was diagnosed with Apraxia; Verbal apraxia is a disorder of articulation characterized by difficulty with sequencing and organizing motor or muscle movements specifically for the production of speech. It may also be described as the impaired ability to motor-plan. We have often used Sam's reading ability to work on his speech. He learned to read certain sentences well and then was able to use those same sentences when he wanted to ask for something. His speech did not sound as natural as if he had thought of it and said it himself but he was able to express his wants and needs to us.

An area we struggled with was...should we or shouldn't we introduce sign language and this was before Sam had been diagnosed with a conductive hearing loss in both ears. We attempted sign language early on but noticed that Sam no longer attempted speech, even when asked to use both the sign and word, Sam would only sign. His verbal expression simply stopped. I was disappointed because I had heard wonderful stories about using both sign and speech to help a child express themselves but as I have often learned with Sam...what works for some doesn't necessarily work for him. We stopped using sign and again focused on reading and speech. Sam began to attempt his speech utterances again. NACD had me do a therapeutic video on naming the letters and their sounds. This was one of Sam's favorite videos and a video I won't post here on my blog. In this video it is a close up of my face saying the letters such as "A" "ahhhh". On a larger screen TV, honestly, no one wants to see their face that close up...but Sam would watch my mouth and say everything along with me. This video gave him wonderful practice on forming the letter sounds. We now use sign language again to help cue Sam's speech and to communicate with him in the pool when he doesn't wear his hearing aid or across a room when I don't want to yell something.

After Sam became comfortable reading words that have a picture, ie (horse, house, car...). We then moved on to the words without pictures, ie (of, the, when, we...). As he learned these words we would make up short sentences for him to read. When he became comfortable with sentences we moved on to easy reader books and are now at Level 3 books. Sam did great with Level 1 and 2 books but hit a wall when we got to Level 3. The number of words and size of the text kinda sent him for a loop. So I purchased a magnifier off of Ebay and have used that to make the reading of Level 3 books more pleasant for Sam.

One of the hardest areas to check was his comprehension. Sam is just learning how to hear properly with his hearing aid and he now is working on listening with intention. However, when I would ask questions about what he read he would often get them incorrect. So we have started to use a word bank, allowing Sam to look at possible answers and choose the best one. We also play a Read and Do game, where I write a sentence like, "Get up, run to the front door and knock on it." Sam reads it completely on his own and then I say, "Okay, go do it" and he does. Another way to check Sam's comprehension is to play, Treasure Hunt. I have collected different containers, travel shampoo bottles, travel soap dishes, tooth brush holders and I put a message or clue in each one. Then I hand Sam the first clue, which he reads by himself and he then has to figure out where the next message is. I end the game with a treat, grapes or TV time. The funny thing is Sam has often wanted to pass on the treat and just keep playing. I will try to video tape him playing this game.

I have included a video of Sam reading his sentences and choosing the right magnet to complete the sentence. Another great way to check comprehension. The important part, know your child can do it, raise your expectations and some advice from Sam...MAKE IT FUN!!