Monday, October 31, 2011

Putting It All in Perspective

"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).


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

Sunday, October 30, 2011

Making Connections

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 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.

Saturday, October 29, 2011

Christian Royal Pottery

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:

              with the charm of things imperfect and simple.  

And, we might add, exquisitely beautiful.

Friday, October 28, 2011

Firing at Random from My Brain to Yours

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.

Thursday, October 27, 2011

There Is Something I Like about Punky

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.

Wednesday, October 26, 2011

Finding Things

Fun with sensory development

Shut your eyes!

Find the car.  No peeking!

You did it!

Shut your eyes again!

Find the block.


Find the pig!

Find the ball!

Find the chicken!

Find the brothers.

Found them!
Best find of the day!

Tuesday, October 25, 2011

Partial Family Portrait... 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.

Monday, October 24, 2011

Come to Think of It...

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."

Sunday, October 23, 2011

Getting All Emotional

Practicing new vocabulary words







Ice cream
Wait a minute!  That's not an emotion!

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

Happy now?

Saturday, October 22, 2011

There Are No Shortcuts

"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!

Friday, October 21, 2011

In Step

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).

Thursday, October 20, 2011

Classic Disclaimers

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.

Wednesday, October 19, 2011

How to Eat Barbecue Sauce

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.)

Tuesday, October 18, 2011

From Head to Toe

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.