Annual Cardiology Check-Up

 

Matthew had his annual cardiologist today.  He gets to have an electrocardiogram, echocardiogram, and a visit with the specialist once every year.

Remember his mitral regurgitation (leaky valve)?  Last year, it was “moderate,” and they wanted to watch it closely.  This year, it is “trivial.”

And that pin-hole between his ventricles that they were watching?  It is gone!

In fact, his little heart is doing so well, we can now go 2 years between cardiology check-ups.

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Not too bad for “zero percent chance of survival….”

. . .

There is so much going on around here … so much to write about.  New house, new baby, new puppy, new flock of chickens, new routines … I apologize that I don’t keep this blog very well updated.  For now, just taking care of my children and my family takes all of my time and energy.  At the end of the day, I can barely form a complete thought, let alone write one down!  But, we are very, very blessed, and for now, it is enough.  Patient readers, thank you for continuing to care about our precious little boy and our family.  I will update when I can.  

 

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World Down Syndrome Day 3/21/13

March 21st is World Down Syndrome Day.  It’s a day to celebrate everyone who has been blessed by an extra chromosome, and we will hold our sweet Matthew extra close today (and probably give him ice cream!).

However, I’m afraid my heart is heavy tonight as I post this, after reading two more cases of abuse this week – one in a classroom, and one in a theater, with the latter resulting in the death of the victim, Robert Saylor.  These cases break my heart.  They are not the first, nor will they be the last.  There was Bede Vanderhorst, a 16yo who was not allowed to sit in First Class on an airline, even though he had a first class ticket. And little 7 year old Angie who was suffocated by her own teachers!  Then you have the state of Florida warehousing children with Down syndrome.  And, perhaps worst of all, their own mother’s womb is still the most dangerous place in the world for children with Down syndrome.

And yet, 3/21 is a day set aside to let the world know that people with Down syndrome are, indeed, special.  Not “special” in the way the word has come to be used as an insult, but rather truly precious, valued and loved individuals.  Robert Saylor’s mother said in one of her interviews that abuse is only a symptom of a greater disease – of people viewing our children as something of a lesser being.  it’s time to move beyond “awareness,” and onto acceptance.  We need the world to accept the full humanity of our children with Down syndrome.

And so, it is fitting that the IDSC has chosen “Who I Am” for the theme for this year’s video.  Let’s show the world who we are!

On Homeschooling

Recently, someone questioned our decision to keep Matthew home instead of enrolling him in the public school system.  I know that, to an outsider, it might seem like we are not doing all we can for our little guy by not taking advantage of the programs and therapies that are offered by the schools.

So, I thought I would take a moment to explain why we do what we do.

Our venture into the homeschooling world started with Micah.  As I explain why we decided to educate him at home, I’m going to brag about him a little bit.  (If you don’t want to hear it, feel free to scroll down a few paragraphs.)  Keep in mind there are many, many different reasons we choose to homeschool – I’m just going to touch on some of the big ones in this post.

At the Vawter academy, we can pray in school, we can talk about God, and we can incorporate our faith into all of our studies.  For example, Micah’s language arts book is called “Language of God,” and gently incorporates faith and values into each lesson.  Here is an excerpt from one of my favorite lessons:

In all that I think and say and do, God comes first.  Others are next, and I am last.  That is the proper order in writing, too.

YES: John and I are going to play ball.

NO: I and John are going to play ball.

His handwriting lessons have him write out Bible verses instead of meaningless sentences, and his science books teach about God’s creation.

We tell Micah that God has given us each different gifts, none of which are necessarily better/worse than others, but we all need to find out how God wants us to use the gifts He gives us to serve Him and do His work here on Earth.  Micah knows that one of his gifts is his ability to learn, but we honestly try to not let him know just how amazing he is.  He learns things very quickly, remembers them well, and begs for more.  When Micah was only 18 months old, he was pointing at and correctly identifying every letter of the alphabet.  This wasn’t because we pushed him, but because he was constantly pointing at things saying, “What’s dat?”

At the beginning of this school year, I ordered curriculum that was to last us through first grade.  However, he finished his (2nd grade) Science book in December, and I had to order the 3rd-grade book.  He only has one chapter left in his Spanish book, one story left in his History book, and just a few pages left in Language Arts.  We’re about a quarter of the way through his 2nd-grade Math book.  He started reading at a very young age, and reads everything he can get his hands on.  He recently read “The Lion, The Witch, and the Wardrobe” by C.S. Lewis in 1 day, then proceeded to read the entire series within a month.  When we had him tested last year (Kindergarten), he scored in the 99th percentile in every subject, and landed at a 5th-grade reading level.

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So, we decided to keep homeschooling him.  1: it’s working. 2: we both enjoy it.  3: we only spend a few hours a day on formal schooling, and he has the rest of the day to enjoy being a kid.  4: We can teach him things we want him to know, and shield him from things we don’t want him to learn just yet.  5:  I can (barely) stay ahead of him, keeping him interested and challenged.  6:  I like having him around, and so do his younger siblings.

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And then, there’s Matthew.  Yes, Matthew is different – he has Down syndrome.  So, our decisions to educate him at home are a little different, too.

First of all, we did try some of the services offered by the school system.  They were good services, and we have nothing bad to say about most of the teachers and therapists that worked with him – it just didn’t work for Matthew. (See my post: “Speech Therapy Drop-Out“)

Matthew is five now, and would ordinarily be starting Kindergarten in the fall.  He can identify and say (and sign!) all of his colors: red, orange, yellow, green, blue, purple, pink, black, white, brown, and silver.  He knows the shapes: circle, square, rectangle, triangle, star, heart, crescent, and diamond.  He knows all of his letters, capital and lower-case, and can tell you the sound each letter makes.  He can read 30 sight-words, and reads them in 7-10 word sentences when we put them together.  He can count to ten every time, and identify the written numbers.  He’s working on counting to twenty, but often gets lost in the teens.  Not too bad for pre-K, especially when you consider that he does have significant expressive language delays, so this is just the information that he can tell me that he knows.  There is probably a lot more that he knows, but just can’t express yet.

He is hard to capture on video – especially trying to juggle his word cards, the camera, and an active 9-month-old, so sometimes the first word of a sentence is cut off.

Because we feel that Matthew is thriving in his current learning environment, we see no reason to drastically change it by sending him to school in the fall.  We visited the school and the classroom where he would be placed, and we felt that it was not ideal for Matthew.  We live in a small community, and like all schools, ours are doing their best with limited resources.  Matthew would be the only child with Down syndrome in his class, surrounded by children with autism and behavior disorders.  The classroom and curriculum are geared toward these students, because they have to be.  It’s a great place for these students, but it’s just not the right place for Matthew.

Please understand that our decision to homeschool our children is in no way meant to insult any schools or teachers.  Aaron and I both have many friends and relatives who are teachers, and we appreciate the work they do.  We value their support, help, and insight as we discuss ideas and learning strategies.  Trust me, there is nothing like trying to run a “classroom” with four young children to make you appreciate what it must take to run a classroom with 30!

And, we do have difficult days.  I think all moms and all teachers do!  Most of the time, Micah does his morning work fairly independently, then we work on Spanish, math, and science after lunch when some of the younger ones are resting.  However, there are days when things don’t run that smoothly.  There are times one of us is tired, grumpy, or just doesn’t feel like working.  There are times we both get frustrated, times I lose my patience and yell at the kids … then feel terrible about it later.  There are times I am too distracted by laundry or dishes, and I’m not the best teacher.  There are times the little ones are too distracting to let Micah focus, and there are times Matthew flat-out refuses to obey or do anything I ask him to do!  In fact, we watch for little windows of Matthew’s most agreeable mood to work on academics, because if he doesn’t want to do it, it is NOT going to happen!

But, overall, we feel that our home environment is the best place for Micah and Matthew to learn.  If that changes over time, we will too.  We are simply trying to give each of our children what is in their best interest, at each step along the way.

Matthew’s Story… and a contest!

I did it!

I finally finished a project I’ve been working on for some time: writing a version of Matthew’s story that can be shared with a wider audience.  The challenge was to make it concise enough yet complete enough.  It’s published now, under the “Matthew’s Story” tab on this blog (formerly “About Matthew.”).  It is my hope that it will be published a couple other places soon, but I will let you know when and if that happens.

I still need a good title for his story, and I would love your help!

So, let’s have a contest!

Leave your suggestions for a great title in the comments below.  If I choose your suggestion, you will win a great prize!

Maybe you’ll win an Amazon.com gift card… or maybe you’ll win some chocolate … or maybe you can buy yourself some chocolate with your Amazon gift card… I haven’t decided yet.

Yes, you may have multiple entries.  The more ideas, the better!

Ready, Set, GO!

(Thank you, Danielle, Sarah, and Shannon for your editing help!)

Our First Buddy Walk

Last weekend, we participated in our very first Buddy Walk!  I had heard about walks in other parts of the country, but I honestly didn’t know that there was an event close to our hometown.

In our little community, Down syndrome is a lonely club.  There are very, very few children with Down syndrome.

However, as our family was watching the annual “Frontier Days” parade this summer, I saw a beautiful, sweet smiling face waving to the crowd from a fire truck.  The sign read, “Molly K.: Fire Chief For A Day.”  I just about jumped out of my skin, elbowing my husband a little harder than I meant to in my excitement – “Look!  A little girl with Down syndrome … IN WALLA WALLA!”

When we received an email from our local special-needs support group from a Mrs. K., asking if there was anyone who would want to form a team for the region’s Buddy Walk, we jumped at the opportunity.  However, I think I was more excited about meeting their family than I was about the Walk!

We met up on our way out of town, made introductions, then drove the hour to the Tri-Cities.  I don’t know what I was expecting … but I know I wasn’t expecting much of a turn out.  After all, we’re such a small region.  I was shocked to see the crowds of people gathered for the event … the news later reported 1600 participants. (More than the events in Seattle or Spokane!)Image

Chris Burke (the actor from “A Life Goes On,”) came to perform and provide entertainment.  Music, dancing, celebrating … I think everyone felt like a celebrity.  I kept thinking about what a fun group we were, and how lucky we were to be a part of this incredible celebration of life.  Five years ago, we had NO idea what we were in for … or how very blessed we were!Image

What an amazing day.  1600 people gathered to celebrate individuals with Down syndrome.  And, celebrate they did!  It was so great to see all of the families gathered together – so many kids, of all sizes and abilities – all having fun together.  The cheerleaders and football players from a local high school were positioned along the walk route, cheering on each participant.  At the finish line, the students were gathered to form a tunnel of cheering, encouraging, excitement that made each walker feel like a super-star.  As my boys “high-fived” them all, everyone was all-smiles.  Image

Watching the kids play together was so heartwarming. Kids with Down syndrome were playing amongst their siblings and friends – there was no line of separation, there was no attitude of “them” and “us.”  In fact, the children seemed to be able to see past their chromosomal differences completely, not even noticing that there was anything unique about this particular gathering of families.  Siblings of kids with Down syndrome are a pretty special bunch, and I found myself wishing the rest of the world could see through their eyes.

Even as my kids look through our pictures from the day, they say things like “That’s our new friend, Molly!  When can we see her again?”  I hear no mention of Molly and Matthew being alike, or Molly being different than other friends we have … just a sweet girl they can’t wait to see again.Image

As we were in line for lunch, I noted that the gentleman in front of us appeared to be by himself.  He was polite, friendly, and looked like he was having a great time meeting people and chatting.  As I asked him if he was having a good day, and if he liked hot-dogs, he replied “Oh yes!”  Then, for the first time, a look of slight shyness crossed his face and he quietly said, “… and I really like hugs, too.”  I think I will remember that warm hug for a long time.  The a welcoming and accepting environment of the Buddy Walk allowed this darling man to just be himself – to strike up conversations with people he didn’t know, and he knew it was a safe place to ask for hugs.

As we got our lunch, we retreated to a quieter area of the park with the K. family, and let the kids play by the river as we visited.  We so enjoyed our time with them.  They are a truly delightful family with three of the sweetest girls!  I came home happy, with a refreshed spirit.  Sometimes it’s really nice to talk to other parents that are “in the club,” and share stories and experiences.  Meeting the K. family was an answer to prayer.

Here are the Walla Walla Walkers:  Who wants to join our team for next year?

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Ready to Read?

This summer, we have been blessed to spend time with a wonderful young lady who is just finishing her student teaching to become a special education teacher.  MG is exactly the kind of person our special little ones need; she has such a kind and gentle heart, and adores our special little ones.  Each and every child in her class will be loved, and seen as the beautiful child of God that he or she is.

MG, your mom shared with me that Matthew was your inspiration to study special education, and we are so honored by that.  But, this summer, you inspired us.  Your coming to help me with the kids not only helped me get some needed chores done, but you also helped renew my perseverance to help Matthew become all he can be. You told me about an article you read about teaching children with Down syndrome to read.

According to the article, researchers have found that children with Down syndrome learn differently than typically developing children.  Instead of starting with phonics, the researchers have found greater success teaching children sight-words.  They suggest simply writing some simple words on flash cards to begin to teach a child to read, starting with family names and some favorite things.  (When adults read, we don’t sound out each word, but rather our brains recognize each word as a whole.)  The entire article is fantastic, and I highly recommend that you read it through if you, or someone you know, is raising a child with Down syndrome.  Throughout the whole thing, I found myself saying, “Yes!  Exactly!  This is Matthew!”  This segment in particular:

… for some of the children signs were an easier and faster response mode than speech. They would look at a flashcard and appear to be concentrating on producing the correct spoken response, meanwhile their hands were already making a correct sign. This additional time needed to produce speech suggested to us that the children might have some sort of specific production difficulty with speech. Even when they knew what they wanted to say, they had difficulty in saying it. …The way in which the children substituted similar meaning words and signed when reading encouraged us to feel that they were more intelligent and had more understanding of language than they were being given credit for.

          …When we watched the video-tapes on which we recorded the children’s reading progress, we noticed that we had captured a number of sequences in which a child was trying to describe an experience or explain something to his mother for which his spoken language skills were inadequate. The child would resort to the combined use of single keywords and mime to try to convey his message. We were convinced again that the children knew what they wanted to say but could not express themselves in speech.

          There are a number of possible hypotheses which could be generated to explain these observations. For example, the child may not have mastered enough grammar to be able to construct the sentences that were being implied by the combination of words and gesture. Alternatively, we could postulate that the child was thinking in sentences but could not execute them in speech.

. . .

This is exactly what I’ve been saying for so long:  Matthew knows what he wants to say, he just can’t form the words!

The article goes on to describe some teaching strategies, the benefits of learning to read written language, and the increase in spoken language development the researchers observed in the kids using the technique.  To put it simply, reading enhances speech.

So, we decided to try it!  We started with just 3 words: “Matthew,” “car,” and “truck,” then introduced about 1 new word per day.  We practice his words for about 5 minutes at a time, just before rest and just before bed (because that’s when I have 5 quiet minutes to spend with Matthew alone!)

If he has trouble with a word, or is hesitant to speak it, we switch to “multiple choice” mode.  That is, we ask him to point to a certain word, which he does more quickly and easily than speaking it, especially if the word is new.

This video is just about 1 week after we started.  At the time, his newest word was “me.”  As usual, the only reward/motivator Matthew requires is applause.

I apologize for the camera angle – I had to prop the camera on a pillow.

Since then, he has learned the word “milk,” and “boat.”  I asked him what word he wanted to learn next, and he said “helicopter” and “hippopotamus.”  Maybe we’ll start with just one of those, and go from there, my ambitious child?

We’re so proud of you, Matthew!  And, many thinks to MG for the information and the inspiration.

As an added bonus, Jesse is learning the words, too!

Click here to read the article: Teaching Children with Down Syndrome to Read