4 GUYS & A LADY

Love Unclenched

2012-02-14T21:24:00.000-05:00

Now I know I've got a heart, because it's breaking.

--The Tin Woodman in The Wizard of Oz

Last night, on the eve of the holiday dedicated to the celebration of love, I read a wrenching post entitled simply "Alone". From the torn heart of a dad, comes the cry we hear echoed far too often by those in our local Down syndrome support group: what do I do when my child with a disability doesn't have friends?

Many of these children are involved in classes and activities in which they have a social life of sorts. But at 3:00 or 5:00 when the class ends, so does the interaction.

Adults who have proved to be independent enough to live on their own also grapple with this loneliness, going home after work to spend the evening hours in solitude, often sinking into depression before their families discover the cause.

And each time I hear or read of another similar account, I worry about the kind of world we inhabit where this unconcern for others happens with such regularity. Are we really so shallow that we can only appreciate diversity under threat of the law, or through the coercion of outside forces? (And who of us would want a friend who was forced to grudgingly spare us an hour?)

Like so many parents caught in this uncertainty, I don't have the answers, only theories. But I'm going to venture to say that I don't believe most of humanity is that cold. I think they are only scared.

I remember the fear I had before I became acquainted with Wade. The fear of meeting others with disabilities, the fear of feeling uncomfortable in an unfamiliar world. What would I say? What would I do? What if I couldn't understand what they were saying? What if I said something inappropriate?

Now I realize that the sad thing about all of those "what ifs" is that they all were focused on me. What if I reach out and something happens to me? What if I get embarrassed/hurt/humiliated?

Perhaps I needed the shaking and cracking of my own heart to realize that real love isn't about me.

For it was then that I discovered the greatest "what if" of all. What if I were the one eating alone? What if it were my child? What would I want others to do? And then the answers became simpler. My embarrassment didn't matter at all. What really mattered was that, even if just for a moment, I made someone else feel valued and loved.

And I am learning that the greatest things I can do are to change myself and then to use that change to influence others. That's why for story time tonight, I read the post "Alone" to Randall and Chris. It opened the door to some good questions we might have otherwise missed asking ourselves.

I can't predict the future; I don't know how my children will respond when I am not present. But I can hope that I am planting seeds of compassion that will grow to influence others. And I can hope that as you have read this post, you have been influenced as well, and that tomorrow you will go out to greet the world, welcoming and unafraid.

Because you know what it feels to be human and to want love. And you know that you hold one of the keys to making a difference.

The question, "Why do children suffer?" has no answer, unless it's simply, "To break our hearts." Once our hearts get broken, they never fully heal. They always ache. But perhaps a broken heart is a more loving instrument. Perhaps only after our hearts have cracked wide open, have finally and totally unclenched, can we truly know love without boundaries.
--Fred Epstein, M.D., If I Get to Five

Montessori and More

2012-02-07T21:15:00.001-05:00

I really never met Maria Montessori until I stumbled into her one day while absorbing massive amounts of information relating to the education of Wade.

I only wish I had met her years ago.

Science is just now beginning to document and verify what Maria learned 100 years ago from simply observing the way children learn best. She had no brain imaging, no way of seeing inside those little heads and yet she taught the children who were considered to be the unteachable and then applied her learning to all children everywhere. Brilliant.

I don't believe in rigid adherence to her pedagogy, but her methods can be applied anywhere there are children, parents, and teachers.

Practical life learning

Movement and balance awareness

Can you carry the bell without ringing it?

Can you balance the marble on the tee?

Hands-on learning and creating order by categorizing

Finding order through sequencing

Simplifying the variables

Early implementation of fine motor activities

(This picture, Wade says, is a robot holding his ears.)

Visuals, lots of visuals

This is a terrific way to teach odd and even numbers. Line up your counters (pennies, buttons, or whatever) two by two. For the odd ones, put the leftover counter at the bottom center. Then run your finger down the center column while saying odd or even for each number. On the odd numbers your finger has to stop before hitting the number because it runs into the penny. On the even numbers, your finger can continue down the path to the number. What a great illustration for visual learners!

Okay, okay, this is not Montessori!

But it could fall under the category of "prepared environment".

*Links to further reading concerning Montessori learning

Top 10 Montessori Principles for Natural Learning

Montessori: The Science Behind the Genius

Mommy Teach Me: Preparing Your Preschool Child for a Lifetime of Learning

Mommy Teach Me to Read: A Complete and Easy-to-Use Home Reading Program

Mommy's Vocabulary Lesson

2012-02-01T16:53:00.000-05:00

Drink until you hear a sneezle and then go show me something with a handle.

He drinks...

...he hears the sneezle (you can only hear sneezles at the bottom of your cup)

...he goes off in search of a handle....

Oh!

Well.......yes, Wade. I guess you're right.

That is a...

...........Handel.

Schuyler and Isabel: Message without Words

2012-01-24T08:52:00.002-05:00

"...She was broken somehow, we knew that. But she wore her brokenness like a veil of stars."

--Robert Rummel-Hudson

Every journey is different. Every person is unique. Every disability is its own story.

Within the general categories of Down syndrome, autism, or cerebral palsy, live the individuals who in spite of some similarities of symptoms are still as varied as the hues of a summer day.

I often consider, therefore, when I write of our experiences with Wade, that our travels do not define either Down syndrome or disability for all others. We can only describe what we know, what we are learning on our own personal road of discovery.

And, yet, it is through the open doors of other parents that we are also allowed to partake of many different journeys which awaken in us the seeds of affinity and compassion for a broader scope of humanity than we could have imagined. It is a world of unusual richness and vitality, of brokenness and heartache, of truth and paradox.

Out of this tangled world of ambiguity, Schuyler's Monster comes to us--the memoir of a dad and his beloved daughter.

"It does not do to leave a dragon out of your calculations if you live near him," Tolkein has said.

But what about the monsters you can't see? You know they exist because you can see what they have done, but you don't know what they look like or who they are.

A known monster is still a monster, but you can at least plan your attack, assess his weak points, and rally your own strengths.

But how do you fight the Unknown?

This is Schuyler's story of the Monster who stole her voice, the Monster who is so rare that few have ever met him.

And as we read her story, our hearts ache with the raw voice of her father who feels that they are fighting the Monster with swords made of rubber. It is a story of sadness and joy, of anger and honesty, of doubt and of hope.

On any given day, I felt like Schuyler was visiting the rest of us here, a tiny being not of this world but trying as hard as she could to fit in. But it was different on Halloween night, watching Schuyler with her gauzy butterfly wings and her crazy pink hair and that braying, unashamed laugh, dancing to some wild and perfect music that the rest of us weren't allowed to hear. On a night like that, it was even easier for me to imagine Schuyler taking flight, her pink Converse hi-tops leaving the surface of this grand rough world for the last time.

I could imagine, with heartbreaking clarity and hand outstretched, watching Schuyler fluttering happily back to wherever she came from, whatever place in the universe exists where bug fairies speak in laughter and where sad, broken fathers aren't welcome.

Rummel-Hudson speaks openly of his spiritual quest, calling himself an agnostic, but sharing his bitter angst with God after the diagnosis as well as his tender longing for a life with greater purpose, with something more.

"She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."

And that says it all so well. For in the enigma called Life, the journeys which bring us the closest to God are not necessarily those which are easy nor those which are easily understood.

Roy Richard Grinker, another father on a different journey, came to a similar conclusion as he wrote about his daughter Isabel in his book Unstrange Minds: "...there is something profoundly meaningful, if not spiritual, about being the father of a child with autism that has pushed me to consider lofty, abstract principles of life like truth, beauty, and goodness."

And I wonder as I read these fathers' accounts, separate and yet entwined, could it be possible that those who have no words sometimes speak with the greatest eloquence of all?

Art Worthy

2012-01-17T20:04:00.001-05:00

It's a photography exhibition from the United Kingdom whose gentle mission has universal appeal:

"Look at the individual and not the condition."

Every so often I read descriptions which delicately refer to people who "suffer from Down syndrome". And every time it makes me laugh because I wonder about the people who seem to "suffer from normalcy".

Join us in watching this slideshow where no one seems to be suffering from anything and where the individual is recognized before the label.

Bailey and the other photographers continue to document new images of Down Syndrome through a generous grant from GlaxoSmithKline in the UK. To find out more information and see the photographs, visit: shiftingperspectives.org.

Bless Winnie the Pooh and Me Too

2012-01-10T12:23:00.001-05:00

Wade had surgery today to have the fourth tube inserted in the right ear, which was once again full of fluid, and a temporary patch over the perforation in the left ear. We are looking forward to the improvement of both his hearing and ours. One day last week after we had turned his (VERY LOUD) music down to reasonable levels, I came into the living room to find him up on the bookcase with his ear pathetically pressed to the speaker. Sad.

The doctor added some type of adhesive to the top side of the tube this time to encourage a longer period of function. Other than super glue, he said, that's about all he could do.

The perforation in the left eardrum is larger than I had envisioned and has really not healed over much as we had hoped since the last surgery. It currently encompasses about 60% of the surface space. The patch will last around six weeks during which time we hope it will encourage new growth and healing. The patch itself will facilitate better temporary hearing by providing more surface area for vibration.

Dr. Vickery said that Wade had better add himself and his left ear to his daily prayers for Winnie the Pooh and Mickey Mouse.

What a nice nurse with an interesting finger tickler!

Off to surgery. Great ride. They treat me like a prince!

Ahhhhh! Breathing in the essence of candy-infused sleep medicine. (Wade loved that and happily breathed it until the mask fell out of his sleepy hand. Then he giggled and went off to sleep. Happy medicine at its best!)

Home again. Relaxing with Winnie the Pooh.

He Said What?

2012-01-02T21:20:00.000-05:00

It's bedtime.

Wade pulls off his shirt, points at the two little bumps on his chest and says proudly, "Pickles!"

My question is this: if I remind him of the anatomically correct term, will I be sorry?

That's the Way It Is

2011-12-29T14:42:00.000-05:00

That's Wade. Another ENT visit. Fluid still present after fighting it all fall. Fourth ear tube surgery scheduled.

That's Randall. Root canal for a front tooth he injured last Christmas.

That's the clothesline. Broken.

That's Monopoly. A nice safe activity in which boys don't break teeth or clotheslines.

Fear Not

2011-12-25T07:34:00.000-05:00

Probably we have all experienced fear in the past year.

Maybe you couldn't find your child in a busy store....and 5 minutes felt like an hour.

Maybe you received a medical diagnosis that made you afraid of the future--or of no future.

Maybe you felt a knot in your stomach (not too much, but just a little bit you know) at the logistics of setting up a new business in a poor economy.

Maybe you were afraid of what can't be explained.

Maybe you were afraid of the truth.

Maybe you wish an angel would appear to you and say, "Fear not!"

In the linking of what appeared to be separate instances, I had an "aha" moment this week complete with two stunning visuals to help me remember to fear not without an angel. Or maybe there was one. Who knows?

Never doubt that God can't work through YouTube.

Nevin had shown me the first video a few weeks ago, a matter of physics and pendulum waves and patterns of movement that cycle through moments of being in sync, then apparently chaotic, and then back in sync again. "Wow!" I said, "Cool!" and went on with my day's work.

On Thursday, our neighbor who creates metal sculptures, called us to come and see his latest creation he had just finished out of pieces from an old restored mill building in town. He had centered the design around an old scale from the building and had incorporated working parts with chain pulleys and big wheels. He had echoed the lollipop shape of the scale in several other metal lollipop pieces, some fixed on the back of the sculpture and some free-swinging on two of the large wheels at the top.

I was fascinated with how much those lollipops reminded me of the seats on a ferris wheel as the wheel spun. But then at certain points they seemed to move at random, flinging themselves in every direction instead of moving smoothly. "There is a mathematical term for that," said Mr. Finch, "and they are not chaotic although they appear to be."

Hmmm. Something began to click. Was it random that the same idea appeared before me twice within a few short weeks?

I don't think so.

Look at these two videos, the first a visual symphony of uncoupled pendulums and the second a computer-generated music box of movement called digital harmony.

Notice the moments in each one where the movement appears to be random, chaotic, without reason.

Then notice how it all comes back together into a beautiful dance of rhythm and order.

And as you watch, think....

...about the Divine Master who created the laws of the universe

...about that same Supreme Being Who knew the rules well enough to break them and send a tiny baby--half human, half God--into a chaotic world

...about a baby who brought with Him the love that makes beautiful harmonic order out of brokenness

...about a baby whose life gave us the purpose to move through apparent randomness toward a predictable goal

...about a baby who taught us that what appears to be random, isn't.

And you might just carry these visuals in your heart to help you move through the moments of fear in a new year.

Or you might just say, "Wow! Cool!" and walk away.

The choice is yours and mine.

Click on the link below to start the animation.
Music Box

All Real Woods Are a Little Enchanted

2011-12-20T14:51:00.002-05:00

We finished reading the Chronicles of Narnia last week and Christopher cried because there are no more.....

So Wade comforted him with an enchantment of his own.

"There's the horse," he said. "Right there!"

And then he played magical music in the background....

Oh, all right. Maybe there are still other books worth reading.

Fairy land arouses a longing for [the child] knows not what. It stirs and troubles him with the dim sense of something beyond his reach and, far from dulling or emptying the actual world, gives it a new dimension of depth. He does not despise real woods because he has read of enchanted woods: the reading makes all real woods a little enchanted. --C. S. Lewis

Partying with Our Extra Chromosomes

2011-12-13T20:44:00.001-05:00

Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas. --Calvin Coolidge

Cool outfit!

Hang onto those whiskers, Santa!

Horse Feathers the Clown

Zarro, the Balloon Artist had fantastic creations.

Thanks to our friends with a little extra, who carry Christmas in their hearts all year.

Signs of the Seasons

2011-12-07T14:26:00.001-05:00

Wade was happy to be an Indian for his Thanksgiving program.

One of his little friends was not happy to be a turkey!

There's a teenager in the house!

Caught in the act! Somebody got hungry ahead of time.

Somebody also thought his head should be in every picture.

When we're not doing everyday things, we've been living in Narnia lately. Delightful!

I found a strange affinity with this glorious quote from Aslan:

"And now....to business. I feel I am going to roar. You had better put your fingers in your ears."

And somebody redesigned the manger scene.

I feel a roar coming on....

How to Become a Norwegian

2011-12-01T08:48:00.001-05:00

It all starts with a pastry board, lefse sticks, and a covered lefse rolling pin. (My Norwegian lefse sticks were handmade by Nevin in the USA.)

Next you make little balls of mashed potatoes, butter, cream, and flour.

Roll them out. Roll them thin!

When you're a piece of lefse, you can never be too thin or too delicate.

Fry them quick at high heat. Real Norwegians, please shut your eyes now. We don't have a real lefse griddle and Randall thought we could get done quicker if we used the smooth side of the waffle iron and fried both sides at once! Scandalous, I know, but it worked!!

Even Wade got in on the action.

And Grandma Ann did too.

There was fun enough to share....all day!

What a good team!

Except that somehow they let Pac-man get inside the griddle. Aaack!!

Ahh! They taste just right! We must be real Norwegians at last.

In Tune with Music Therapy

2011-11-21T16:26:00.001-05:00

For a child, play begins in delight and ends in wisdom. (from Music Together)

The brain that engages in music is changed by engaging in music.

Rhythm helps the brain take the most direct route to a goal.

Through the kind invitation of Wade's music therapist I was able to spend the weekend at the American Music Therapy Association Convention in Atlanta. With a gathering of over 1300 music therapists, the inspiration, talent, and expertise were abundant.

I was interested to discover someone there from North Dakota (my home state). Andrew Knight, a professor of music therapy at UND in Grand Forks, has been instrumental in working with legislature to enable North Dakota to pass the nation's first music therapy licensing law under the State Board of Integrative Health Care. Other states are now following their example. UND has a great article here about the licensure law and about music therapy. It also has a good description about half-way down the page about the rigorous requirements for a music therapist.

The concept of using music to retrain the brain is a very attractive one, not only because music makes work seem like play, but also because there is a much greater advantage in utilizing medical advancements which will reshape the brain to work better rather than depending on drugs which may be able to have similar results, but which also carry with them the price of unknown side effects and continual dependency.

Music therapy has played a significant role in U.S. Rep. Gabrielle Gifford's recovery from a gunshot wound.

These videos show sessions of Gifford's music therapy and explain how music can be used to help form new paths in the brain to take over from the part that is injured or non-functioning.

video platform video management video solutions video player

video platform video management video solutions video player

And here is another interesting article about how music facilitates learning.
Music Learning Supports All Learning

In the world we live in today, sometimes it seems that everyone wants to be a star, to be discovered, to become a singer on a world stage with the millions applauding.

I'll save my applause for the talented stars who humbly sit on my living room floor.....

........and perform for one little boy with Down syndrome.

Crime Scene

2011-11-15T19:36:00.001-05:00

Early Tuesday morning a theft was reported in the home of Nevin Strite of Augusta, GA.

A thorough investigation revealed a lid ajar on a ceramic pumpkin bowl.

After following the trail of candy wrappings.....

the thief was discovered in the home office photographing his own mug shot.....

...from various incriminating angles.

The suspect was immediately taken into custody and fed a proper breakfast.

When asked why he committed the deed, the criminal only said, "Mmmmmm! Good!"

Charges have been dropped, largely due to the charm of the offender.

Please Wash The Egg Carton Under the Faucet

2011-11-08T21:46:00.000-05:00

So I'm compiling the statistics on Wade's vocabulary list to turn into the speech therapist for the month of October and I notice that I have not used the words faucet and egg carton with him at all. Not even once. Even though I have this list before my eyes every day. Even though those were vocabulary words I suggested myself. Even though Randall and Christopher have an egg business in which they gather their produce in egg cartons every day. Prime opportunity for teaching. You'd think out of the 31 days of October I would have noticed that.

And don't I tell Wade to wash his hands every day? But somehow I didn't take the chance to say, "Turn on the faucet."

So I'm feeling lowly and sheepish.

And then I read this article on parenting called Humble Pie: It's Good For You.

You know, I believe that's about right.

I'm grabbing a fork and eating a new kind of health food.

And there's always November.......

.........egg carton, faucet, egg carton, faucet, egg carton, faucet....

Putting It All in Perspective

2011-10-31T20:02:00.000-05:00

"He's doing so well," people say.

I agree and then look at Wade a little guiltily and think, "What if he weren't doing so well? What if he had more health issues? What if I didn't have such a loving support system? What if things were different? Would I still be able to cope?"

But then I think of all the fears of a previous life. A time when I thought, "What if I have a baby with a disability? What if I'm not equipped to live in this world? What if the weights of these new responsibilities crush the joy from life? What if I forever feel the cuts of fresh wounds as all of my baby's peers surpass him in every way? What if we join the ranks of those beaten by circumstances, slogging drearily on and on and on and on?"

And I was afraid.

Ironically, though, the baby in my arms--the object of my fear--was not afraid. He was not afraid of this inadequate mother, this imperfect environment, this disability world. And as he has grown, he has continued to exhibit a strange and marvelous lack of fear.

He fears not the blackest dark, absolute strangers, deep water, great heights, or things that go bump in the night.

It is as alien to me as falling down a rabbit hole into Wonderland.

This innocence and lack of fear require me to be a bit more watchful of him than I might be otherwise. Because of the world we inhabit, I must see the danger he doesn't.

But it is becoming a little less foreign as the years go by to trust first and worry second.

And as I explore his world, I observe the delightful freedom that is his. It it freeing to be happy with yourself and your limitations as well as with everyone else and their limitations. It is refreshing to be able to love freely and generously without worrying about what others may read into your motives. It is lovely to be able to greet each day, each stranger, each opportunity with such enthusiasm.

And in observing his innocent trust, I have realized how much inappropriate fear I have carried with me.

In the life that existed B.W. (Before Wade), I had a secret fear that God would call me to some obscure mission in a part of the world that I would hate. And I would have to go, dragging my tracks shut in dogged submission to the Divine, getting up every morning and having to slay myself on the altar all over again. Because wasn't that what God was about? Saying "Go!" and making you hop to it, asking why it wasn't done already yesterday, and what were you waiting on?

Well, that was my niggling fear anyway.

And then came a baby with slanted eyes (like nobody else) and perfect trust (like nobody else).

Epiphany.

In the past five years, I have learned that this baby was perfectly suited for our family. I have learned to trust that God looks at each of us as individuals and has a Designer wardrobe for each of us to don with joy! I have learned that He cares about me and what I like to do and that His pattern is tailored to fit in a way I could never have dreamed.

And I have learned that if, for some reason, the events of Life would bring changes that would seem more difficult, God would be there ahead of us--leading us gently, not driving us with a whip--and that there would still be joy in the journey.

I knew all of that in my head before.

But now I know it in my heart.

And sometimes I wonder--those beautiful slanted eyes of love, the eyes that are alien to our family...

I wonder.....are they the eyes of his Father?

There is no fear in love, but perfect love casts out fear. I John 4:18

Making Connections

2011-10-30T21:55:00.000-05:00

The more I learn, the more I am amazed at how one area of development leads to another. In His great wisdom, God has created us so that the natural, loving care of families feeds a child's development in exactly the right ways.

It is when we notice deviations from the usual that we realize extra means are necessary to bring about the same results. With any delay in development, it is a gamble to do nothing. We don't do early intervention so that John can compete academically with Sue, but so that John can meet early developmental goals that, in turn, become part of the process which will maximize his potential later on of living a healthy, productive life.

No, I can't predict the future with definitive certainty for my child with developmental delays, but neither can I predict the future for my other children. For all of them, however, I wish to do what I can to guide and train them to be responsible members of society who will help to build for the good of others.

What I do today, although seemingly insignificant, becomes monumental when joining forces with the powers of yesterday and tomorrow.

And so, although I have not yet experienced the future with my children, I can learn from the lives of those who have journeyed a similar path.

So for the protein of today's post, here are some connections to explore for the education of both you and your child.

Down Syndrome 101 ---lots of helpful information here on a wide range of subjects

Down Syndrome Daily ---news articles relating to Down syndrome

Your Therapy Source ---many terrific printables and activities here from pediatric occupational and physical therapists

And here are some things we're doing....as we continue to learn...

You might very well ask, what are we doing? It all looks so ordinary. No formulas for greatness there.

And if you said that you would be absolutely right. For we are learning that simply incorporating the daily lessons into our practical life opportunities as we go, allows the Ordinary to become the fertile ground where someday the Extraordinary may bloom.

Christian Royal Pottery

2011-10-29T20:51:00.000-05:00

Christian Royal is a young adult with Down syndrome who has been making hand-crafted pottery since 2006.

Christian Royal Pottery from Michael Royal on Vimeo.

His pottery is sold in specialty shops in Charleston and Mt. Pleasant, SC with his trademark of a hand print with a single palmar crease.

Take a look at this gallery to see more of his work.

I especially like his slogan:

Stoneware
with the charm of things imperfect and simple.

And, we might add, exquisitely beautiful.

Firing at Random from My Brain to Yours

2011-10-28T21:33:00.000-05:00

1. It's fall. Grab a book and curl up with a cup of something hot. Or you could just find a stoplight somewhere...

Ish and The Dot, both by Peter Reynolds --we all need someone to believe in us. I still love picture books and these speak to my inner artist that has not revealed itself yet.

Active Baby, Healthy Brain by Margaret Sasse--how to play with purpose, and the benefits of doing so. This would make a great baby gift for any parent.

2. Somebody got up early this morning and got the camera. He sort of left his signature at the scene of the crime similar to the time he signed his name Wade in pink highlighter on one of Nevin's business checks. It's really hard to blame something like that on Christopher.

3. I learned today from Christopher that if I were in a cupcake contest with other mothers, I would win in the Messiest Cupcakes Category. Fragile is what you call them, he says.

4. I am done painting. Done. I celebrated by making fragile cupcakes.

5. And I really do not know. Can a ventriloquist throw his burps? Because I don't remember studying that when I signed on to be a mother.

There Is Something I Like about Punky

2011-10-27T21:53:00.000-05:00

History is being made with the first animated cartoon featuring a person with a disability. The show named Punky tells stories from the life of a little six-year-old girl with Down syndrome whose character is voiced by a young adult with Down syndrome from Dublin, Ireland.

Target Entertainment who acquired the global rights to sell Punky has promised to donate half of their global sales commissions to support Down Syndrome Education International's work to improve education for people with Down syndrome.

Finding Things

2011-10-26T21:27:00.000-05:00

Fun with sensory development

Shut your eyes!

Find the car. No peeking!

You did it!

Shut your eyes again!

Find the block.

Yay!

Find the pig!

Find the ball!

Find the chicken!

Find the brothers.

Found them!

Best find of the day!

Partial Family Portrait...

2011-10-25T20:19:00.000-05:00

...by Wade

Mama, Daddy, and Grandma Ann

* For holiday portraits of your own family, please get your orders in early. Wade's unique interpretations are guaranteed to make everyone look young--and thin.

Come to Think of It...

2011-10-24T20:59:00.000-05:00

Once in a rare while in the last five years, while playing with Wade, I have been startled to think, "He looks as if he has Down syndrome."

And then all in the same split second, I remember, "Ah, yes...he does."

It is always with utmost astonishment that I realize I've had such an exchange with my brain. When Wade was born, I thought, never, ever would I be able to forget that extra chromosome. It would, I assumed, be a rain cloud that would hover nearby forever. My own personal weather system with a gloomy extended outlook.

So now, when I experience those flashes of forgetfulness, it makes me laugh with joy. Who knew it would be this way? Who knew life with Down syndrome would become so routine, so part of the ordinary as to be at times only noticed in the same way you would have noticed that fleeting expression of Randall's so much like his cousin Kari, or the way Christopher tells stories with sound effects in the same manner as Uncle Kent.

Some time ago, I read a fascinating true account of a group of people living on Martha's Vineyard who had been affected by a form of hereditary deafness. By the mid 1800's, some of the villages exhibited deafness in as many as one out of four people. Because of this widespread occurrence, the entire community learned Sign language. In some amazing interviews later done by an anthropologist, old acquaintances would talk lovingly of their memories about the former residents without ever mentioning the fact that they were deaf. It was only when asked by the interviewer if these people were not, indeed, deaf that they would stop to think and then say, "Now you come to mention it, yes, Ebenezer was deaf."

I found that account extraordinarily touching. How lovely to read of a world where people were not identified by their limitations, but were first humans, neighbors, friends, fishermen....whatever anyone else was. They just happened to have that little quirk of being deaf. And by learning the language of the deaf, others could enter their world freely and with such understanding as to hardly know who was deaf and who wasn't.

And so, it is with gratitude that I go on learning....about myself.....and about others....and about the bond that connects us all.

And it is in this journey of transformation that I feel with the poet John Magee that "I have slipped the surly bonds of earth,...put out my hand, and touched the face of God."

Getting All Emotional

2011-10-23T15:47:00.001-05:00

Practicing new vocabulary words

Happy

Grumpy

Sad

Thoughtful

Surprised

Scared

Ice cream

Wait a minute! That's not an emotion!

Okay, okay! If you say so. I feel ice cream too!

Happy now?

There Are No Shortcuts

2011-10-22T18:57:00.000-05:00

"Take it easy today," the doctor said after surgery yesterday. At least that's what Nevin tells me he said since I was sort of, um, out of it. "Then you can resume regular activity according to how you feel. Your leg will let you know if you're doing too much."

Well, I'm sort of having trouble communicating with my leg. I'd rather the doctor just said, "Get up and walk 10 minutes out of every hour." That would be easy.

But this thing about listening to my leg. I mean, as soon as I think, yes, it's telling me to lie back and take it easy, then it speaks up and says, "You lazy bum. What do you mean sitting here and letting poor Nevin do all the work? Get up right now!"

And re-wrapping it is another story. There is a fine line between wrapping firmly and shutting off the blood to your toes.

It all makes me have to actually think when I'd rather just take a mental leave of absence for a while.

It's been said that nothing grieves a child more than to study the wrong lesson and learn something he didn't have to learn. (Oh, no! Extra knowledge! What will I do with it?)

But by the time we're adults, we know that extra learning only expands the realm in which we live, creating a more vibrant place to grow.

Of course, we all want our children to learn and to enjoy learning. But how do we accomplish this?

Meet the Hobart Shakespeareans. Fifth graders from the inner city. For most of them English is a second language.

Meet Rafe Esquith. The teacher who year after year does the impossible, transforming young minds to perform far above the expected, training them to learn for the intrinsic value of knowledge, and ultimately changing them to benefit society with their creativity.

What curriculum does he use, that can bring about such marvelous results?

The answer is this: none.

His classroom has two rules. Be nice. Work hard.

And I'm guessing that's not what you wanted to hear.

But these children, whom nobody expected to succeed at anything except maybe crime, are reading above grade level, doing algebra, and performing Shakespeare's plays. And all because of a teacher who goes the extra mile, who observes the children and sees how they really learn, who invests overtime in the future--theirs, yours, and mine.

I am not suggesting that you move to California and enroll your children in Rafe's class. I am not even suggesting that you find a similarly talented professional to inspire your child.

We all seem to want a miracle. A short way of getting there from here. There must, we think, be some magical program that will get us what we want. If we just do this 10 or 20 minutes a day, find the right teacher/therapist, gulp the right nutritional system, buy the right computer program, etc. then, at last, everything will fall into place.

But the truth is that the magic we are looking for exists between our own ears.

We live in a time when becoming empowered with knowledge is extraordinarily easy. The Information Superhighway brings it straight to our doors. News You Can Use falls from the sky in any form you want. But all the knowledge in the world won't be beneficial unless we put it to work. And we, as parents, must take that responsibility to do so.

You are the Rafe in your child's life.

Read. Make informed decisions.

Observe. How does your child learn? What time of day does he function best?

Keep records. The progress may be slow, so keeping a calendar of your child's progress helps you to see that, yes, he is performing on a higher level this month than last. At the end of May, he might not have been answering comprehension questions with any degree of sensibility. "Is there a dinosaur in the room?" "Yes!" But by August, you realize that he is listening to your questions and trying to make reasonable replies. "What did you see on your field trip to the farm?" "A pig! And horse! And dinosaur!" (Well, okay, 2 out of 3 isn't bad.)

Pay attention to the details. Respond with enthusiasm when he uses his new vocabulary words. Notice when he opens the middle drawer, then says to himself, "No, bottom drawer!" Celebrate and reinforce. "You found your bath toys in the bottom drawer!"

Practice new skills and build on previous knowledge. It is of little use to have the most brilliant professionals working with your child if you are not going to have the self-discipline to reinforce at home what they are teaching.

These things sound so simple. And that's probably where we tend to fall down. There is no glamour in doing the same type of thing day after day. But it's in the repetition and the knowledge of when to move forward that the foundations of learning are laid.

We just have to listen and think and act. In short, connect with your inner Rafe.

Now let me go speak to my leg. Did you say purple? Aaaarrrrgghhh!

In Step

2011-10-21T21:57:00.000-05:00

Wade wore his orthotic inserts to therapy and prayer meeting without complaint on Wednesday. I didn't have him wear them yesterday because he had a field trip and I was afraid all the walking would be too much. But this morning, Wade happily got the inserts and brought them to me. After I helped him put them on, he giggled and said, "I love it!"

The boys are spending the night at Grandma's as I recuperate from minor vein surgery this morning. I'm a little loopy and a little nauseated and not quite ready to say, "I love it." But tomorrow is another day (in which I will probably wonder what in the world I posted today).

Classic Disclaimers

2011-10-20T20:52:00.000-05:00

Randall, age 5: Maybe I already did put my toys away and the devil got them back out.

Christopher, age 6: No, I didn't see it. But my memory is so good that I can imagine what she saw.

Randall, age 11: Just because you saw me do it doesn't mean it was me. It might have been a disguise.

Christopher, age 7: Who won the war of 1957?
Mom: What war of 1957?
Chris: I mean the war when the Israelites got killed.
Mom: Oh, well, the Israelites fought many wars, but those were years ago.
Chris: No, I mean the war when George Washington was in it.

Wade, age 5 (locks the van door with his foot)
Dad: Wade, did you lock the door again?
Wade, (looking guilty): No!
Dad: Then who did it?
Wade: Wade did it!

Conclusion: Logic is overrated. Confusion works just fine. Mom and Dad are now speechless.

How to Eat Barbecue Sauce

2011-10-19T20:54:00.002-05:00

Wade poured his own barbecue sauce tonight when no one was looking.

Please take notes.

In a few months this delicious sauce (made by Nevin) will be available for purchase at a retailer near you. The only right way to eat this sauce is a half bottle at a time, as demonstrated by Wade.

We look forward to your business.

(If it is not available at a retailer near you, then you need to get near a retailer.)

From Head to Toe

2011-10-18T21:16:00.000-05:00

Christopher gets a "good morning" from Wade.

And if the day wasn't good before, it is now.

Murphy eats breakfast.

Wade visits the ENT.

Wade has been on antibiotics twice lately because of fluid on his ears. The tube in the right ear is no longer functioning, and the left ear still has a perforation which has healed somewhat. Visits to the ENT are frequent as we try to stay on top of things. The fluid was no longer there today and his hearing was fine. There was some negative pressure though which may be an indication of fluid either coming or going. The doctor prescribed a nasal spray to help drain his Eustachian tubes and another visit in 4 - 6 weeks if we can make it that long.

All done! Dr. Vickery is a good buddy.

Oh, but what could make a happy boy sad?

It's these inserts for his shoes.

Wade is quite flatfooted. After jumping down 4 steps this summer (because Christopher did it), he slightly injured his foot and limped for a couple of days. The two pt's who examined him felt that he really should be wearing inserts to help support his arches. So he had another doctor visit today to get the inserts and make sure they fit. They seemed to fit, although by the time we checked out, he told me they were "too tight".

He fell asleep, however, and slept in the car with Grandma during another stop. But partway home I looked back to see tears quietly rolling down his cheeks while he worked fruitlessly to get his shoes off. After a while I asked him if his feet hurt and he said, "Yes!" He didn't make another sound all the way home, but the silent tears kept coming. If he had just screamed and yelled like an ordinary child, it wouldn't have broken my heart.

But here he is, home, and glad to have them off.

And here I am, home, and dreading putting them back on tomorrow.

A Few Good Things

2011-10-17T21:30:00.001-05:00

We've finally discovered a few more good websites besides Starfall.

Literactive is an excellent source of interactive reading activities. It has plenty of games for developing listening skills which is just what Wade needs to be practicing. You have to register, but it's free. Once you log in, just click on the green "Road to Reading" button. It also has some very nice printable worksheets.

Earobics also has a nice section of educational games in the beginner, intermediate, and advanced levels.

National Kindergarten Readiness also has a very good website with articles, activities, and printables for a variety of developmental skills needed for entering school.

Mighty Book is a website with many interactive storybooks, songs, puzzles, art, and classical music. There is an astonishing amount to be had for free and then once you're hooked, you can pay the subscription and get more. I have not subscribed, so I can't vouch for what all is there, but what I have seen is put together well.

ABC Fast Phonics is a phonics tutorial with cartoons. It is not wildly exciting with fun and games, but it can be used to build vocabulary and to practice enunciation.

And finally, San Francisco Symphony for Kids is a website that I used this summer to teach Wade the category of instruments. You can click on each instrument and it makes its own sound. For older kids, it also has a music lab where you can learn more basics and compose your own music.

Have fun exploring with your child!

Clapping While the Heroes Go By

2011-10-16T22:03:00.000-05:00

We can't all be heroes because somebody has to sit on the curb and clap as they go by.

--Will Rogers

Today we celebrated the heroes that don't always get noticed. We celebrated the ones who so often are willing to let the rest of us shine while they quietly take the backstage. And we were honored to sit on the curb and clap for some real accomplishments: for hard work, for persistence, for patience, for showing us how to take time to watch the butterflies, for all the things that really matter.

CSRA Buddy Walk 2011

Visit with Horsefeathers the Clown

Castle to decorate

Crafts to paint

Beautiful wreaths made by Lori Bell, a young adult with Down syndrome

We met friends old and new.

It was a perfect day with beautiful weather and over 700 people coming out to join us.

Our little buddy Wade started the walk on his own two feet,

but ended it on David's shoulders.

A kind lady gave Wade a huge dog. Doesn't it look real?

"The dog's name," said Wade, "is Murphy!"

Good-night, Murphy! It's been a good day!

On the Calendar: Saturday

2011-10-15T20:12:00.000-05:00

Saturday chores

Music therapy with David

(no, we don't usually have mt three days a week, but we were making up for missed time)

Stretching the spider's web

Woooooooo--ooooooooo!

Peek-a-boo!

Afternoon treat--4 guys at the air show

The rajah rides on his throne

Look, Dad! Phonics in the sky!

Yep, you really are there behind those glasses!

Self-portrait of Wade

It was a day no pigs would die or fly;

it was a day the cat would lay eggs.

On the Calendar: Friday

2011-10-14T20:40:00.001-05:00

Schoolwork with Mrs. Lovett, special ed teacher

Practicing listening skills with Earobics

The other boys had the day off school, so we ran some errands and went to the library where Wade was delighted to find Winnie the Pooh. They had a nice little conversation right there among the books.

"Pink, pink, pink," said Wade, patting Pooh's paw against his head (meaning, "think, think, think")

Then, nose to nose with Pooh, he lovingly said, "Good-bye, Winnie the Pooh," and put him back up on the shelf.

And then, what do you know, Randall and Christopher found some Winnie the Pooh DVD's!

"Winnie the Pooh! I take it home!"

Wade was also delighted to find all by himself the book Let's Go, Froggy which is on one of his Kindermusik CD's. He sat right down and read it out loud to anyone in the library who wanted to listen.

And then he read it again at home.

And again.

And now we're all done with Friday!

On the Calendar: Thursday

2011-10-13T22:12:00.000-05:00

....Bible Play School again all morning

...music therapy in the afternoon...singing songs

...making sentences

...play the tambourine up high

...play the tambourine down low

...sleep up high

...sleep down low

Some people sleep on their pillows;

Wade's pillow sleeps on him.

On the Calendar: Wednesday

2011-10-12T21:14:00.000-05:00

Wednesday's schedule is the same as Tuesday's with OT, speech, and Bible Play School.

Then it's time to take a nap.

Speech homework today was practicing matching things that belong. Sometimes the answers get interesting.

"What likes to eat carrots?" He's supposed to say, "A rabbit."
Instead he says, beaming, "I do!"

"What do you do with a nail?"
"Eat it!"

So we went out to Daddy to have a practical life lesson on hammers and nails and saws.

Show me a nail, Daddy!

Here they are in the box marked "nails"!

We do not eat nails!

We hammer nails!

Wade can do it too!

Does a saw cut paper?

No, a saw cuts wood.

See Wade saw!

Now back inside to finish the homework from Bible Play School.

Then it's time to help Chris study spelling words. Wade loves to call out the words for Chris. It helps Wade to practice enunciating the words clearly enough that Chris can understand them. Wade says the word and then Chris is supposed to say the word, spell it out, and then say it again. And Wade is very, very impressed with this say, spell, say thing. In fact, one evening he was so excited he couldn't wait for Chris to spell the word. He said, "Play, S-P-E-R-T, play!"

And then there are the fill in the blank sentences to practice like "You sleep in a _______."

Today I had given him several open-ended sentences in which he did well. Then I said, "Mommy drives a _________."

And Wade said, "Balloon!"

And Nevin said, "I thought he said 'broom'."

(!!!!!!!!!!!!!!!!!!!!!!)

And I think I just saw a prince turn into a frog.

On the Calendar: Tuesday

2011-10-11T20:14:00.000-05:00

Wade has both speech and occupational therapy on Tuesdays. He correctly told me how to get there this morning by telling me where to turn right or left. When I remember, I've been taking a little different route this year after deciding it was shorter. But one morning (without enough coffee) I would have missed it if he hadn't suddenly looked up from his book and said, "Turn right, Mom!"

In speech therapy today, he was cutting with a scissors, saying picture strings, and matching items that belong together like peanuts and elephants.

"Who eats peanuts?" Sara said, and the sweet little girl in speech with Wade answered, "My mommy eats peanuts!"

In OT Wade practiced throwing and catching a ball while standing on a designated spot. Every time he caught the ball he got to name a favorite food. We've been working on categories: fruit and vegetables; zoo, farm, and ocean animals; musical instruments, furniture, etc.

After therapy, he goes to Bible Play School where he plays, sings, and studies with the other children.

That's his best buddy Bryan on the left!

The schoolwork this year is a step up for him because it involves writing letters and numbers within the lines. But he is absolutely thrilled because the children have homework every day to reinforce the skills they are learning.

Today he cut out the otter for the Things That Begin with O page and then said, "Beautiful!"

Today Grandma Ann picked him up at Bible Play School because I was serving hot lunch with some other moms at Randall and Christopher's school. It's always a delight for Wade when Grandma Ann picks him up. He thinks she should be worked into his schedule every day.

And just to prove that he's not the only one that works, here are a few pictures of Randall and Chris at school too.

On the Calendar: Monday

2011-10-10T22:02:00.000-05:00

I've been working on time concepts with Wade. Every evening before he goes to bed we talk about what the next day will be and what he will be doing at what time during the day. One of his music therapists taught us a great little song that talks about yesterday, today, and tomorrow, and every morning we sing that while talking about the day's schedule. That great printable above is from School Sparks.

I have his monthly schedule written out on a calendar page, and each evening Wade draws an X across the day that is all done. Last year I just did a weekly schedule because each day of every week was the same. This year though his schedule is not the same each week so it was better to write (in pencil!) the month's activities.

So this week I'll tell a bit about what he does each day in therapy or school and also one or more activities we do at home.

This morning he had Yellow Time with Mommy. Don't ask me why it's called Yellow Time; that's what he named it and so that's what it is. But he looks forward to it as much as if it would be Ice Cream Time.

We tossed balls into a container.

These little balls are easy to make and easy to throw. One of Wade's ot's gave me the idea. Randall made these for Wade's Christmas gift one year, but you can just use a handkerchief and stuff it with plastic bags or with quilt batting. Tie it shut with a ribbon or with a tight rubber band and you have a great therapy toy!

In the afternoon, Wade had music therapy with Andrea. They were talking about fall things today, so there were lots of new and old vocabulary words, which led to my favorite quote of the day.

Andrea: Wade, what do you eat on Thanksgiving Day?

Wade: Cats!

Broken and Improved

2011-10-09T17:55:00.000-05:00

My aunt made a wise observation about the broken Angel of Hope: "She will look just fine glued together. It will just show that she has character and will make one little boy remember."

What a great commentary on life that statement is! It does, after all, take the experiences of life to break our pride, build our character, and cause us to remember.

Remember the wonderful story of the Velveteen Rabbit.

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

As my friend reminded me when she gave me the gift, the Angel of Hope symbolizes the mission of "sharing the light of hope and courage". And I cannot do that unless I am broken and worn off enough to be "real".

So here is the Angel of Hope today, new and improved, because she symbolizes sharing not only the light of hope and courage, but also the remembrance of fear and despair. And out of that remembrance will come the compassion that will make her real.

Dancing with Common Sense

2011-10-08T21:50:00.000-05:00

The Angel of Hope got broken the other day, by a very little boy who threw a ball too high in a room where he wasn't supposed to be throwing balls.

I loved that angel because it was given to me by a dear friend and mentor who somehow, without being told, divined that I loved all Willow Tree art. Kindred spirits are like that, I guess.

But now it's broken, like Dagon.

And in the words of Sarah Ban Breathnach, I once again remember that "learning to shrug is the beginning of wisdom." Or perhaps learning when to shrug and when not to shrug.

Another friend sent me a quote that I love because it presents the perfect picture of the balance of shrugging. "Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing." William James

So tonight I'm dancing with Common Sense and gluing the Angel of Hope and remembering my very favorite quote of all.

"I have plenty of common sense: I just don't use it!" Christopher Strite

Budget-Friendly Homeschooling

2011-10-07T20:38:00.000-05:00

This was Wade's idea for low-cost writing practice--no paper, pencils, crayons, chalkboards, chalk, or erasers required.

It's also environmentally friendly: it doesn't contribute to global warming or destroy the ozone, trees, sea turtles or spotted owls.

You can buy it for free here on our blog.

The Schoolmaster Called Failure

2011-10-06T20:18:00.001-05:00

All right. I'm going to get this off my chest right at the beginning.

When it comes to caulking anything, I am a definite failure.

I have other failures to my name also, but Caulking is the monster staring me in the face right now.

Somehow I have managed to live my life thus far without making an intimate acquaintance with Caulking, in spite of the fact that we built a new house and then fixed up the other one.

But now he has hunted me down. And it's a relationship that, frankly, is on the rocks.

It all started with the economy going down the tubes for general contractors like Nevin and with opportunity leading us down a long road to establishing a new business in food production. And if you want to blame it on Obama or Bush, you can, but I'd rather think there is a Divine hand nudging us in this direction.

It's all a detailed and complicated story, but in the end it involves spending more time and money than you would think, and building a processing facility in the former garden spot, and putting in a swimming pool at the same time which sounds totally bizarre, but makes sense in an odd sort of way in conjunction with the fire department. And it involves making salad dressings and barbecue sauces to start out with and adding other items somewhere along the way.

It also includes a dream to be successful enough to someday hire people with disabilities to work with us because we see this as a need that society is struggling to fill.

But before we can succeed in the building of this dream, we must face the realities. Like caulking.

"Apply a bead of caulk along the edge of the trim before painting the final coat," the instructions say.

It sounds so simple, but somehow I don't think they are talking about the kind of beading burping out of my gun. Pop beads, I think is what they're called.

And it is scant comfort to realize that God gave me 10 fingers so I'd have plenty to rotate through as I wipe gobs from the woodwork.

And what do you do about corners? I mean, I can understand in a limited way the innies, but what about the outies. It's like trying to ski up the pointed tip of a snowplow.

Which leads me back to the subject of failure.

I suppose anyone who has started a new business thinks about the possibility of failure. New adventures involve learning new ways of doing things. Making salad dressing for public consumption is a bit different than making small amounts in your own kitchen. How do you get every batch the right consistency? How many flops will we create that will run like water instead of salad dressing? Or how many will ooze like, well, caulk, for instance?

I read a magnificent commentary recently by Paul Tough in New York Times. It was called "What If the Secret to Success Is Failure?"

It is a lengthy article, but well-worth reading and considering. Headmaster of one of New York's most prestigious schools, Dominic Randolph makes some surprising judgments on modern American education. Below are some excerpts taken from the article.

The most critical missing piece, Randolph explained...is character — those essential traits of mind and habit that were drilled into him at boarding school in England and that also have deep roots in American history. “Whether it’s the pioneer in the Conestoga wagon or someone coming here in the 1920s from southern Italy, there was this idea in America that if you worked hard and you showed real grit, that you could be successful,” he said. “Strangely, we’ve now forgotten that. People who have an easy time of things, who get 800s on their SAT’s, I worry that those people get feedback that everything they’re doing is great. And I think as a result, we are actually setting them up for long-term failure."

“The idea of building grit and building self-control is that you get that through failure,” Randolph explained. “And in most highly academic environments in the United States, no one fails anything.”

Randolph wants his students to succeed, of course — it’s just that he believes that in order to do so, they first need to learn how to fail.

David Levin, the co-founder of the KIPP network of charter schools and the superintendent of the KIPP schools in New York City also weighs in with the same conclusions.

As Levin watched the progress of those KIPP alumni, he noticed something curious: the students who persisted in college were not necessarily the ones who had excelled academically at KIPP; they were the ones with exceptional character strengths, like optimism and persistence and social intelligence. They were the ones who were able to recover from a bad grade and resolve to do better next time; to bounce back from a fight with their parents; to resist the urge to go out to the movies and stay home and study instead; to persuade professors to give them extra help after class.

I found the article to be a refreshing breath of air in a world where only perfection seems admirable.

Think about it though. What gymnastics coach would put a beginner on the high beam without first teaching him how to fall? And why should it be any less important in the rest of life to teach our children how to fall?

One of my favorite mantras for our boys is that failure is only a mistake if you fail to learn from it.

And one of our favorite books at the moment is Beautiful Oops by Barney Saltzberg which is a children's book that is profound in its simplicity.

Through the eyes of an artist, mistakes become design elements.

"Think of your mistakes," he says, "as an opportunity to make something beautiful".

I like that. So you messed up today. How will you build on that knowledge to make something better tomorrow? Our children need to hear this message from us.

So when, in the future you're shopping at Save-A-Lot and you see runny bottles of salad dressing labeled Beautiful Oops Marinade, you'll know the inside story.

And as for the caulking failure, well, I'm thinking of just signing my name on the office wall and calling it modern art.

Wordy Wednesday

2011-10-05T21:19:00.000-05:00

Language has been the slowest part of Wade's development. His receptive language is considerably more advanced than his expressive language, but both are lagging.

It has been interesting to observe, however, that he really doesn't learn so very differently from other children, but he just smells the roses longer at each spot before he moves on. This lingering in the rose garden has enabled me to examine with greater clarity the processes that take place in developing ordinary skills and to become aware of how to break down those processes into small steps that are not so overwhelming.

And the more I learn, the more I am stunned at the way the Creator made us. Truly, the half has not been told, because it hasn't even been discovered yet.

So, as Wade's vocabulary is expanding, so is mine, which is proving to be good cerebral exercise for each of us.

However, on my way to town one evening with all three boys, I was annoyingly aware that one of them was mass-producing excessive vocabulary, blah, blah, blah, all the time with never a break, and it was getting to be TOO MUCH. So as any good mother would, I opened my mouth to say, "Would you please be quiet?"

Then it occurred to me. That was Wade talking non-stop! We had waited a long time for this moment.

And I shut my mouth and smiled.

It was such a delight then to go home and tell Nevin, "Guess what! I almost had to tell Wade to stop talking so much tonight! Isn't that great?"

Every day now, I am treasuring hearing him express his thoughts with that refreshing perspective little people have.

So here are some Wednesday words of gold.

"Mom, coughies!" (he had the hiccups but couldn't think of the right word)

Dad, that's enough! (when Nevin reached for more chips)

And when he got a picture in the mail just for him of his cousin Kay Wren: "That's cute! I love it!"

He is currently tucked in bed sleeping with the picture.

And I think that's cute! I love it!

All the Things He'll Never Do

2011-10-04T19:16:00.000-05:00

When Wade was born with Down syndrome, we immediately thought of the limitations we imagined would be part of the script of his life. During that first week as we waited for test results to come back, I tried not to think the long thoughts I was thinking. And when Wade failed his first, second and third hearing tests I looked at him sleeping soundly and wondered if this was only the beginning of many failures.

But the day the definitive test came back, in the midst of my tears, I suddenly had another thought: Wouldn't I rather have him be like this than to be evil?

And then my thoughts took a different road.

Think of all the things he'll never do!

He'll never rob a bank.

He'll never be a threat to anyone.

He'll never hold someone hostage or commandeer a school shooting.

He'll likely never kill someone because he's driving under the influence of alcohol.

He won't embezzle millions from his employer.

He'll never abort innocent babies.

And he'll never, never fly big planes into twin towers.

Now, I humbly realize that I, like Adam and Eve, have lived my life under the delusion that a knowledge of good and evil is desirable.

And I look at Wade and realize that I, too, would really rather not know evil. But I must, because only to him and to those like him has been given the wonderful Gift of Innocence.

And it is this beautiful Gift that connects me daily to that Better World where, someday once again, we will know only Good.

What Is Normal?

2011-10-03T21:03:00.000-05:00

Every so often, situations arise that make me think, "I wonder what a normal mother would do."

And then I wonder why I don't think of myself as being normal.

I suppose it's because even after 12 (almost 13!) years of mothering, I still feel bewildered and blundering. "Why are you always praying for wisdom?" Chris asks.

Years ago, it seemed to me that mothers of this advanced maternal age would be the settled and sensible, if-you-do-this-that-will-happen type of sages.

It also seemed quite obvious at one point in my life that a + b = c.

But some days now I'm not so sure but what a + b = g or x or even z . Who knows?

And conversations like this don't help.

Chris: God said that Job was a perfect man, but Job said things about God that weren't true, so how could he be perfect?

Wade: Tigger is best; Tigger is best!

Randall: I wonder who was tempted to pick my nose before I was.

Me: And how does this relate to anything?

Randall: Well, the Bible says there is no temptation new to man.

Wade: Tigger is best!!

Randall: And how in the world are we going to give account for every word we say? Isn't that going to take an awfully long time? For example, when God says, "All, right, Randall, why did you say A?" and I'll have to say, "Well, A is an article, which means it's an adjective used to describe a noun......"

Wade: TIGGER IS BEST!!

And I have absolutely nothing to say about that.

So I'll just post birthday pictures.

"I wonder," said Chris, "if I'll get stuck like Pooh in the Honey Pot."

Well, anyway, it was good to the last smackerel.

Tigger really is the best for a new eight-year-old and his buddy.

Everyone must wear party hats, decreed Christopher.

And Wade sang "Happy Birthday" to everyone whether or not it was your birthday.

In summary, the older I get, the more I believe that Patsy Clairmont was right: normal really is just a setting on your dryer.

Wonderful World

2011-10-02T17:30:00.000-05:00

The faces of Down syndrome...

*Photography by Coleen Barnhart

It's October Again...

2011-10-01T20:52:00.000-05:00

...Down Syndrome Awareness Month.

Join us every day this month as we celebrate the epiphany of 47 chromosomes.

And as you journey with us, may our time together become an educational walk that will change our lives forever.

The Language of Music

2011-09-25T22:33:00.000-05:00

"It's easy to play any musical instrument: all you have to do is touch the right key at the right time and the instrument will play itself."- J.S. Bach

Wade began music therapy with a Kindermusik class when he was 3 years old. After that class was completed, we continued with one-on-one music therapy over the summer. We have kept on with music therapy ever since except for a break this summer. He now has music therapy twice a week with two different music therapists.

One of the first benefits of music therapy that I saw in Wade was an improvement in rhythm. Because rhythm is included in the backbone of speech, as a child's rhythm improves, so also does his vocabulary. I had thought that it would take much hand-over-hand tutoring to accomplish the art of staying in rhythm, but Wade was soon tapping to the beat, inspired by observing and imitating (what seemed to be) playful games with the music therapist. And along with a better sense of rhythm came new words and longer sentences.

Another huge benefit of music therapy for Wade is that the music therapist is able to take any of the child's other pt, ot, or speech goals and incorporate them into the music. Because music has always been a passion for Wade, it provides the key to unlock the doors of fundamental learning by seducing his attention and holding it. Music becomes an invisible schoolhouse in a natural setting enabling him to learn and meet his goals without ever realizing that he is working. Music has helped to stretch his attention span until now he is able to put small puzzles together independently and to complete tracing pages mostly on his own. Days of the week, months of the year, weather, abc's, and numbers have all been learned through music. When he was younger, music was the best way to teach him sign language. Additionally, isolating problematic letter sounds and putting them to music also helped to make him aware of remembering to say them the correct way.

Music therapy's incorporation of movement and learning corresponds well to the explosion of current research on the connection between movement and cognition, whose findings imply that education should involve movement to enhance learning. When Wade manipulates learning mediums with his hands, or moves with purpose related to mental activity, he processes and retains new information much better. It stretches his ability to complete sequencing activities correctly and aids in the process of permanently downloading new vocabulary into his brain.

When Wade turned 4, the music therapist began to do adaptive piano along with the other mt activities. Once again, I have been amazed at the performance of cognitive skills this has showcased that I might otherwise have missed. This is a great picture of order in the environment creating order in the mind. Now, at almost 5, Wade is playing simple songs on the piano (by reading color-coded music) and is isolating the appropriate fingers to use with the coordinating keys. He is also best able to follow a sequence when it involves the keyboard, leading me to believe that music has enhanced his listening skills and helped him to focus with much greater clarity. Research again backs up this theory by showing how brains can organize themselves in response to sensory input. An interesting study was done in 1980 by M. C. Piper and M. K. Ramsay on the effect of early home environment on the mental development of infants who had Down syndrome. In this study, organization in the home was a direct factor in predicting the IQ of these children.

More recent research reported by Oliver Sacks in Musicophilia reveals the fact that a professional musician's occupation can be identified by simply seeing a picture of his brain. In other words, the study of music has given him more connections between the hemispheres of his brain than most other people have. If that is true, then it seems likely to me that a well-ordered introduction and guidance to music beginning when my child is very young will have long-lasting impact on his cognitive development throughout life.

It is a passion worth cultivating.

* For further information on music and Down syndrome read this article written by Stephanie Bennet in 2009 entitled "Music may improve verbal memory--Implications for children with Down syndrome".

* And do take a look at this clip about Bryann Burgess who will be singing the national anthem for our Buddy Walk in a couple of weeks. Bryann is currently a junior at the University of South Carolina where she is participating in their non-degree program, living on campus, and attending classes on her own without a tutor. Her passion for teaching and her talent for music come together in the work she is doing in assisting with a Kindermusik class.

Hello, My Name is Wade

2011-09-20T21:13:00.000-05:00

I just had a birthday. I am five years old.

When I was born, my mom wondered what I would be like when I was five.

I could have told her she didn't need to worry.

Because now that I'm five I can do lots of things.

Take a look.

Ah, Mom! You don't need to worry about me!

I can even take pictures with your camera.

Oooops!

Oh well, a fella can't be good at everything.

I Am Russell's Voice

2011-09-12T22:33:00.000-05:00

There's an elephant in the room. I've sort of been avoiding him. It seems that he's talked about, too often, with a sense of anger.

But anger isn't needed. And Russell has a voice who has spoken gently and well.

Listen.

The Adventure of Sleeping

2011-09-04T22:24:00.000-05:00

So, I tuck Wade in bed--he's all agreeable and smiling good night. But when I check on him a while later, I find this.......mummy bear sleeping on three pillows and lovingly snuggled in the blanket. Where is Wade?

Ah! There he is, in his brother's bed where he'd much rather sleep.

He sleeps so creatively that I just can't get done taking pictures.

There's no adventure like a nap (at least when your name is Wade).

The Book Nook

2011-08-28T20:58:00.000-05:00

"Any way, because we are readers, we don't have to wait for some communications executive to decide what we should think about next--and how we should think about it. We can fill our heads with anything from aardvarks to zucchinis--at any time of night or day."--Kurt Vonnegut

We all confess to being book addicts at our house. The one rule that applies is No Reading at the Table When Everyone Is Present. But reading at all other times is fair game.

We read together.

We read apart.

We read until we fall asleep.

A few of us have even been known to snatch a few words at stoplights (shhhhh, don't tell).

And part of the fun of reading is discussing and sharing a book with someone else.

So here are a few Good Reads.

The Hundred Dresses by Eleanor Estes

We love all books by Eleanor Estes, because she happens to have remembered perfectly what it is to be a child with the delightful innocence of fresh perspectives. But The Hundred Dresses also captures the potential of children to be cruel to those who are different. Estes draws a thoughtful picture through the conscience of one little girl who can imagine what it must feel like to be alone and ridiculed.

And in the end we learned the beauty of a mind that speaks a different language. This is a wonderful story to read aloud and discuss with your children.

My Brother's Keeper by Michelle Beachy

Along the same theme is the touching true story of a boy's love for his little brother who was born with a disability. Told from the viewpoint of Andrew, the older brother, we learn much of how a family works together in times of need and how love is big enough to stretch to fit any situation. It's hard to read this tender story with dry eyes.

Healing the Hardware of the Soul by Daniel Amen

In the past few years, I've particularly enjoyed reading books on the brain and how it works...or doesn't. Dr. Amen is a Christian psychiatrist and brain imaging specialist. His staunch belief in God makes his approach to brain function very refreshing to me. Dr. Amen uses a brain imaging technique called SPECT to picture brain function and then to tailor individual programs to fit particular needs.

Did you know that over time our brains change by what we feed into them? This is both a frightening and an encouraging thought.

"When the brain is healthy, we are compassionate, thoughtful, loving, relaxed, and goal directed, and when the brain is sick or damaged we are unfeeling, impulsive, angry, tense, and unfocused, and it is very hard for our soul and our relationship with God to be at peace."

Dr. Amen tells about a group of scientists who, in 1997, seemed to have discovered a "God module" in the brain. "The scientists located a circuit of nerves in the temporal lobes that became electrically active when the patients thought about God. The scientists said that initial results suggested that the phenomenon of religious belief could be 'hard-wired' into the brain."

Doesn't it make sense, said Dr. Amen, that the God Who made us would have created inside us a place especially designed for communicating with Him?

In all of my reading about the brain, I find that thought the most lovely of all.

The brain is the violin and the soul is the violinist. They both need to work together to make beautiful music. --Father Charles Ava

Goal Accomplished

2011-08-21T15:46:00.000-05:00

Wade has a marvelous lack of fear which is a wonderful thing to behold in some ways, and a terrifying thing to behold in other ways. We always carry with us the knowledge that his absence of fear must of necessity make us more aware, more careful than we would otherwise need to be. Therefore, we must be proactive in equipping him with the skills of survival.

This summer's survival techniques involved swimming. And he did it! He learned to swim!!!

And I still can't take my eyes off him for a minute. He thinks he can do everything his brothers do. Terrifying.

A Bit of Love, Smeared with Paint

2011-08-14T15:48:00.000-05:00

"I love you, Mama," he said, right before he drove his trike into my full paint tray.

And then he waited patiently while I scrubbed the paint off him and his vehicle and me and the floor and...........oh well, I love you too, Wade.

Randall, Christopher, and Wade, Inc.

2011-08-08T21:39:00.001-05:00

A little smiling, a little fighting, a little loving, a little smiting.......ah, that's the life!

Randall writes the minutes. (Secretaries everywhere....take note.)

Christopher follows the directions. (Do you think he was glad to get to the last one?)

Wade thinks it's all "thbbbbbbbbbt".

Where Is Wade?

2011-08-01T20:02:00.001-05:00

Wade loves to play Hide and Seek. Randall and Christopher hide and he tries to find them as they "peep" at him. He needs practice in discriminating sound location.

He also has just begun to consistently answer me when I call: "Where are you, Wade?". He says, "Right here!" which forces me to practice my ability to discriminate sound location.

So now we are working on a modified version of Hide and Seek in which he has to use words to describe his location to me.

Where is Wade?

Today in the middle of Modified Hide and Seek, a science lesson ran in the door.

A baby lizard---isn't he darling?

Back to hide and seek.

Where is the lizard?

Oh noooooooooooo!!!!!!!

The Balance of Life

2011-07-24T16:24:00.002-05:00

So much of life seems to be about striking the right balance. A little of this, some of that, and not too much of either.

Enough sunshine to give you Vitamin D, but not enough to give you a sunburn.

Water in proper disbursements to avoid either flood or drought.

Exercise for the cortex in harmony with a workout for the biceps.

And I'm guessing that never in history has it been so easy to be unbalanced. We live in a wonderful land of nearly unlimited choices, from the cuisine we swallow (Greek, Chinese, Mexican, or Mennonite) to the creeds we embrace (Hi-tech, Organic, Completely Artificial, or Who Cares).

No matter where we look, there is an expert ready to make us feel guilty. Thus, we race in circles trying to be all things to all people. Food Guru, check. Crafty Mama, check. Manicured Mabel, check. Frugal Fanny, check. Gigantic Headache, check.

Where are the days when choices were simple? Car--black. Clothes--on. Food--whatever your husband shot.

But then it occurs to me that those simple days involved washboards, butchering, and no a/c.

I suppose the point is that every generation, every individual has to strike his own balance.

And therein lies the difficulty.

If there were a rule book to go by, a similar pattern to each life, I wouldn't have to think so hard.

But, perhaps, in the daily struggle to create a balance out of myriad events, perhaps then I exercise the mental muscles of temperance, submission, and faith that would otherwise be left to languish.

I have to figure it out each week.

How do I balance the time I spend tutoring Wade with the time to nurture Randall and Christopher?

What about balanced meals, a clean house, church work, quiet time with God, and space to develop friendships with other families?

In ten years, will I be wishing I had focused somewhere else?

Weeks tick by that feel terribly out of balance.

Times when the necessity of loving others rises above the need to practice word strings with Wade.

Occasions when working on a new business venture eats up the organization of laundry, cleaning and cooking.

Days when you have noisy time with God and hope He understands.

Evenings when you find the man who is your husband and finally complete that sentence you started in the morning.

So what is the answer to staying balanced, especially when my balance may differ greatly from yours?

Well, there may not be a rule book, but I'm gradually learning some universal principles that help me walk the tightrope.

Define important goals. What really needs to be accomplished, both daily and long-term?
Focus. I must keep my eyes off Crafty Carla, Entertaining Emily, and even Frugal Fannie. I can admire and learn from them, but my focus must be on the job God has set before me, not before them.
Be honest. Life has its times when I cannot stay on schedule. Crises arise, both small and large, visitors stop by to be welcomed and enjoyed; garden fruits and vegetables need to be processed in season. But then I must make sure to get back on track without using the interruptions as a continued excuse for negligence. An exception to the rule is just that--an exception, not a lifestyle.
Look at the Big Picture. Backing off to survey the whole scene helps me sort out the necessary from the trivial.
Develop an eternal perspective. ”Begin to see yourself as a soul with a body rather than a body with a soul.” --Wayne Dyer During this period called Time, we have to perform the routine duties of life in order to sustain a healthy, orderly existence. But it is only as we look through God's eyes that we can properly balance out the routine with the spiritual.

And so in the rhythm that is Life, after we are done with the Exceptions to the Rule, I have a cleaning and laundry marathon with Randall and Christopher and tip the scales once again in the favor of order.

And I resume daily sessions with Wade in which I am surprised at his new vocabulary. (Where did he learn that?)

And the Imp of Life who is always ready to put things in perspective comes in the form of Christopher who hears about a man in charge of an orphanage and says reprovingly, "How can it be, Mom, that you are 41 and have only 3 children, and that man is 28 and has 200? I find that stunning."

And I laugh uncontrollably with the man who is my husband, knowing that, with a little effort, the zigs eventually balance out the zags and, thank God, I'm not even going to try to strike a balance between 3 and 200.

*Disclaimer: I am not 41, even though my son kindly thinks I am..

The Art of Mothering

2011-07-20T15:23:00.000-05:00

Some days Mothering is a Van Gogh: look too closely and it's a meaningless blur; stand back, and everything makes sense.

Other days Mothering is an Abstract; or you could say, with an Abstract Mother, anything can happen.

And here's the proof:

While I was abstract (existing in thought but not having a physical or concrete existence) Wade quietly ate cookie after cookie--but only the halves with the lemon filling.

Count them. Eight lemon-less halves of evidence left.

So for today, I would like to share this essay on Motherhood written by Barbara Classen (from Prayers and Peanut Butter).

Motherhood

I know absolutely nothing about being a mother --- nothing at all.

--The end

It's Not Work If It's Play

2011-07-10T17:39:00.001-05:00

Shhh! Don't tell Wade that Yellow Time with Mommy isn't just a game.

And don't tell him that when he gets a "reward" of drinking yogurt through a coffee straw, it's actually work too.

We've been doing a lot of work with categories: numbers, letters, toys, musical instruments, containers, things to wear, furniture. Deciding if something was a number or a letter was difficult at first. On the pictures above, he did fine with sorting the magnetic numbers and letters into separate bowls, but needed quite a bit of tutoring on the worksheet.

Buttons have been another difficult item, but he has finally mastered unbuttoning small buttons. And the reason I know that is because he unbuttoned my dress one day while I was talking to someone and holding him at the same time. The true sign of a therapy-drenched mother is when she looks down in shock at her unbuttoned dress in public and says, "Yes!!!!!!" One of life's great moments.

And then sometimes, in order to make an idea stick, you might just have to tattoo it onto your child. After I labeled Wade's hands and feet with permanent marker, the concept of left and right and the correct fingers on the piano were much easier. It's just one of those mantras of ordinary parenthood that have been turned upside down. Instead of telling him not to write on himself with permanent markers, I just do it myself. Whatever works.

Following a pattern can also be difficult. He finds it easy to follow patterns in spelling words or in placing the magnetic shapes on a template. But listening and then remembering a pattern (first red, then yellow, then green) is quite hard, as well as just laying out a row of colored blocks or stringing the right beads in prescribed patterns.

Tracing numbers, shapes and letters has really helped his fine motor skills. Ziggity Zoom and Activity Village both have some great printable tracing worksheets for letters and numbers that we have done over and over.

I also am using a set of preschool books from Rod and Staff to further supplement and reinforce what he has learned.

Our private school does not offer kindergarten or preschool, so the mothers use this set of books with their children at home in order to ensure that the children will be ready for first grade. It is an excellent preschool program. Wade loves the rhymes with the visuals for how to make the numbers. Saying the rhymes as he draws the numbers helps him to keep a picture in his head of what needs to be done.

A straight line down and then you're done---

This is how to make a one.

Around and back on a railroad track---

Two, two, two!

Around a tree, and around a tree---

This is how to make a three.

Down and over, then down some more---

This is how to make a four.

Down the trunk and around the tree---

Add a branch. It's five, you see!

Curving down into a loop---

Number six can roll a hoop.

Across the sky and down from heaven---

This is how to make a seven.

Make an S, but do not wait---

Circle back to make an eight.

A loop on top and then a line---

This is how to make a nine.

Make a one and then a zero---

It's easy to make a ten, you know.

Another great source of printables for literacy and math comes from the Learning Program, which is based in Orange County, CA, and was developed by a mom of a child with Down syndrome. I think you have to register in order to be able to access their materials, but registration is free and the materials are wonderful! The three pictures above are showing worksheets from the Learning Program.

A wonderful resource for practicing speaking skills is Mommy Speech Therapy, which is a very informative blog done by a speech therapist. She has great printable worksheets which focus on the articulation of initial, medial, and final sounds. There are worksheets targeting specific sounds with single words, sentences, or stories. It's Word Heaven for Wade!

And then there are the other fun things to practice like cutting. Wade decided one day that it would be easier to cut right over top of the trash can rather than have to clean up at the end!

He likes to practice acting out words: here we are doing initial g sounds--grumpy and glad.

And I mustn't forget to leave a tribute to the workers behind the scenes who help me so much every day.

It takes a family, working together to get it all done...

...or undone.

Sometimes I get surprised by a picnic lunch made by Chris!

And sometimes we really don't know whether it's work...

....or play...

God bless 'em!

Wade and Friends

2011-07-03T15:40:00.000-05:00

Jesus loves the little children...

Kisses to you....

And Jesus said, " I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven. And whoever welcomes a little child like this in my name welcomes Me."

*Photos courtesy of Coleen Barnhart

Here and There

2011-06-24T15:55:00.000-05:00

Summertime Leisure

"I am not texting!" she said indignantly.

VBS for the first time for Wade!

But growing up is hard work. At nap time, he just couldn't seem to wake up!

Sleeping in bed.....

sleeping on Randall.....

sleeping on the love seat....

sleeping on the couch.....

How does a fella wake up?

Maybe you do it one eye at a time.

Randall catches some air.

Christopher comes in for a landing.

"Oh well, I'll just patch it myself," he said.

So he did.

Wade operates heavy equipment.

Mmmm! Sweet corn!

Who's that in my house?

Up close and personal, he really was kind of cute.

Trip to Ohio where the weather was lovely...

...the strawberries were blooming...

...the raspberries were flourishing (red, purple, and yellow!)

...the mint tea patch was lush...

...the cousins were exuberant...

...the wind was made for kites....

...the grape arbor was absolutely charming...

...and the doughnuts were yummy!

Aunt Betty is Christopher's friend for life.

Never underestimate what a doughnut can do.

How Flexible Are You?

2011-06-05T16:22:00.000-05:00

Wade's amazing ability to flex with ease has always astounded me. He's just shy of being one of those people who can sit on their own heads.

And even while we know it is caused by the thing called hypotonia, we're still a little jealous because all we can sit on are other people's heads.

But even though we ordinary people may be limited in our physical range of motion, we still have the potential to learn how to flex in other areas of life. Scientists have only scratched the surface in their understanding of the plasticity of the brain and its potential to change and adapt to its circumstances.

Recently, I read a book entitled The Brain That Changes Itself by Norman Droidge. This book was fascinating in its stories of the amazing adaptability of the brain which, when injured, is able to allocate adjacent brain matter to take over for the damaged part. Detailed in the book are the works of dedicated scientists and researchers who are developing programs which exercise the brain in specific ways to enhance performance in damaged areas.

Especially interesting was the story of the first doctor to perform the amputation of a phantom limb, which he did by the use of illusion! Simply by employing a trick of the mind, the phantom limb no longer itched where it couldn't be scratched. No drugs involved; no side effects.

The exciting thing about some of these new possibilities is the hope that exists for the restoration and maintenance of brain function not only for those with brain injuries, but also for those of us (everyone) who will lose valuable brain reflex and capacity as we age.

As we learn to flex our brains when we are young, we provide better pathways for adaptability when we are old.

So don't fight against having to learn new things, walk new roads, and map unfamiliar territory. It's all part of developing those brainy washboard abs.

Another item of interest involved the rehabilitation of stroke victims. Insurance companies usually only provide rehab for a certain number of weeks because after that point, the patients seem to plateau and fail to make any more progress. But current research shows that during the weeks when the patients' achievements appear to have leveled off, the brain is, indeed, still busy working behind the scenes sorting everything out and making the new connections that are needed to support the further transformations that will take place.

It is in the pausing, that the long-term learning takes place.

I like that thought. Wade has provided me with many opportunities the past four years to pause and think---thoughts about learning and love, about beauty and simplicity, about embracing change and welcoming flexibility. And there is really no rocket science involved.

But now I know that simple steps can be made simpler.

And I must be more patient to teach than eager to test.

And different is interesting, not frightening.

And the world is friendlier than I thought.

And loving someone unconditionally doesn't eliminate the need to train and to guide.

And there is a network of intertwining lives, past and present, that have provided a rich world for Wade to live in with possibilities that have never been better.

And I realize that the least of these really aren't least at all.

And I know that trying to explain all this is like picking apart the wings of a butterfly--the loveliness I see in my mind only looks awkward and tattered when I try to dissect it.

Because love still can't be explained. Not at all, not by the most brilliant brain imaging.

And God can't be explained either, but He is closer and I thank Him daily for giving me the opportunity to flex where it matters.

Because in turning my world upside down, He helped me know which way is up.

Come to think of it, when it comes to mental gymnastics, I might actually be sitting on my own head.

The Performer

2011-05-28T21:06:00.014-05:00

Wade finished his second year of Bible Play School last week with a flourish. For the program, his class were all fish; Wade is the little blue fish who spots Daddy in the balcony!

Somehow Or Other.......

2011-05-16T20:21:00.000-05:00

......it's summer!

The end-of-the-year program and picnic were Saturday. By this morning, Randall was already talking about something that happened back when he was in sixth grade.

And I sent Christopher to wash his hands for supper and he forgot and brushed his teeth instead.

And Wade has some new and enlightening phrases.

Great idea!

What in the world!

Mom! Recycle!

And then he has mumblings which no one can understand but which Christopher interprets anyway. "He said Randall was King of the Nose Hole and that I am The Greatest Person Who Ever Lived Except for God and Jesus."

And as for the bird......he was fluttering around inside the wall of our bedroom closet.

I believe it's going to be an interesting summer.

Notes of Interest Found Behind the Dresser

2011-05-08T13:52:00.000-05:00

The #1 Boy's Hut

We, the members of the #1 Boy's Hut, in order to form a more Godly hut promise to:

--try not to get in fights

--try not to kick members out of the hut

--try not to tease anybody

Signed___________________

Test

1. What would you do if you saw some people that were not members of the hut that were tearing down the hut? (Ask them nicely to go away.)

2. What would you do if you started to get in a fight with someone? (stop fighting and go find either Randy or Randall)

3. What would you do if a person started acting really snobbish? (Hold a meeting with the other members and decide what to do.)

4. Should we have a president or a very high-positioned person?

5. How many members should there be in the hut?

6. Should we move the hut?

7. Should we make the hut bigger?

8. Should we have a hut and a club, just a hut, or just a club?

9. What do you think we should name the hut?

10. Will you follow the rules?

And last of all is my personal favorite.....

11.. The girl's hut is right beside our hut. Do you think we should fight the girls?

Oh yes, I love ~~housecleaning~~, ~~finding things behind dressers~~, living in a house of boys.