Sweet Sleep

Wade's sleep patterns have always been somewhat of a mystery to me.

As an infant, if I had not awakened him, he would have slept the night away every night.  He never woke up crying in the night. (Didn't he feel hunger pangs?) I had to wake him up to get him to eat, and even then it was a struggle keeping him (or me!) awake long enough to feed him.  

But as he became older and more ambulatory, he started to wander in the night and we seriously wondered about the quality of his sleep.  Was he actually sleeping all night or was he just silently awake? 

We finally had a sleep study done with a resulting diagnosis of moderate sleep apnea.  In hopes of improved breathing and better sleep quality, his ENT performed a tonsillectomy to remove the large tonsils from his small airway.

Now, seven months after the surgery, we are happy to see that both his snoring and his night time wandering have ceased.  He does seem to be a social sleeper, sometimes getting out of his bed and moving in with Randall in the middle of the night, or sleeping half a nap in his bed and the other half wherever he happens to lie down closer to the action of the household.  

And he still gets up early in the morning, but apparently he is just wired to be a morning person. At 6:00 a.m., Wade goes from deep slumber to stark awakening like toast popping out of a toaster.  One second he's sleeping, the next he's fully functional.  And then this warm little piece of toast likes to crawl up on us and pry open our eyelids to see if we're waking up yet.   (Well, yes, now we're awake!)

But while he is asleep, he always provides me with the most interesting photo ops:
folded up...covered up...stretched out...tucked under...with spectacles...with George...with underwear.

With underwear??????

No, I don't understand either.

But before sleep, he likes to tell God about his day and I'm sure God is much better at understanding his prayers than I am.  I only catch snatches here and there.  

Sometimes, instead, he sings his favorite bedtime prayer in which he remembers most of the words and occasionally adds a few extra.  In the video below, he forgot to bless Mommy. Guess that's what I get for videotaping his prayers!

Dear Father in heaven,

look down from above,

bless Daddy and Mommy,

and those whom I love

 (he often quickly inserts the words Randall and Chris in place of the word those)

May angels guard over

my slumbers, and when

the morning is breaking,

awake me.

Amen.

A Good Kiss Is Like a Sandwich

Here's a love story that I'm predicting will last.  Forever.

It's called "When Bill Met Shelley".   Listen to their story and celebrate true romance where good kisses and sandwiches both have something to do with Cupid.

And then to kindle another warm glow, take time for a visit to downtown Tinley Park in Illinois, where the non-profit Garden Gallery & Studio  has created a gentle blend of art, diversity, inclusion, and good coffee.  There's just something I really like about seeing all of those words together in the same sentence.

And in other news, here is my favorite spontaneous sentence of  today, "Mom, you are my sweetheart!"

Happy Valentine's Day!

This Is a Test

For Wade, freedom of speech comes at a high price.  He has had many hours of therapy invested in acquiring the verbal skills other children seem to pluck from the air.  We've been working especially hard on teaching him to speak slowly and clearly.  Without frequent reminders, he tends to rush through his sentences as though he were speaking in shorthand.

Part of his language disorder is cognitive, i.e. lacking the ability to express complex thoughts in ways that make sense to others.  But another part of his language delay stems from a mild muscle weakness in his tongue, lips, and jaw, making proper articulation more difficult to achieve.  When you think about what very minute changes your tongue and lips make to produce each separate vowel sound, for example, it is easier to understand how a slight muscle weakness could significantly garble the clarity of your words.

Sometimes I wish someone would invent little speech bubbles that would automatically float up above his head any time he would speak.  What an amazing technology that would be for the language impaired!  The possibilities would be stunning.*

In the meantime, however, my measuring stick for whether Wade's language is really improving has been to observe how well other people outside of the family can comprehend what he is saying.

So here is a test of your interpretive skills.  This is a video clip during one of Wade's speech therapy sessions this week. Can you understand what he reads from the paper in this clip?

*(After the therapeutic usefulness of the Auto-Bubble Speech Clouds had been thoroughly explored, then you could branch out to other realms such as making your own speech bubbles float above someone else's head.  Imagine what interesting things I could make Nevin say that he never thought, for example.  It would be written ventriloquism.)

Words of Gold

Language has been Wade's biggest hurdle in this world.  He easily reads other people's words and observes people and listens to conversations with almost the close attention to detail that a deaf person might exhibit.  But piecing together words to make sentences of his own has been difficult and evasive.

That's why my listening pleasure knows no bounds when I hear him expressing original thoughts that can actually be understood.

"I make house of sticks for Eeyore!"

"I like snuggle with Mommy." 

"Randall, I want my toast.  At 15 o'clock!"

"Toe hurts.  Need rubber band!"

Lately he's been picking up language and expressions with much greater ease.  At the dentist's office this fall, he danced in front of a funny mirror with another little boy who kept exclaiming, "Oh my gosh!"  Wade remembered to use that expression liberally the rest of the day and then appeared to have forgotten it.  Until last night when Nevin gave him a piggy back ride to bed.  And Wade said suddenly and very clearly, "Oh my gosh!"

Among his favorite books to read are my large collection of old readers.  Today he must have been taking notes on the formal greetings of long-ago families during his early morning reading.

He greeted us at 6:45.  "Good morning, Mother!  Good morning, Father!"

He said good-by to the speech therapist.  "Good-bye, Sara Brown!"

And then I took my polite little boy to the library.  We checked out our books and the librarian told him good-bye.   He answered cheerfully, "Good-bye, Porky Bob!"

And I'm prouder than the parent of an honor student at how hard we've worked to get the language to be this disrespectful.

The Music Lives On

Today we said good-bye to a friend.

He came for three years with songs and laughter and dancing, and Wade followed him like the Pied Piper of music therapy.

His teaching was a mixture of rhythm and glissandi, listening and counting, beach balls and swirling scarves,  piano and castanets.

And for everything there was a song.

But now he's gone and we don't have a song for that.

And Wade doesn't understand the meaning of no David.

"David sick?" he says.  "David in hospital?"

And I don't know what to say.

So we sit together and sing the "Good-bye Song" as we did so many times at the end of a session.

"Good-bye, David, good-bye.  

Good-bye is what we say.  

Good-bye, David, good-bye.  

We'll see you again another day."

But somehow it seems all sad and wrong.

And then suddenly I know why.

It's the wrong song.  David would have known that.  Because his music isn't ending; it's only beginning.  Today he is singing new songs more beautiful and golden than any he sang on earth.

And so we sing again, the right song this time, to David who lives today as he never did before.

"Hello, hello to David; 

Hello, hello to David; 

We'll sing and laugh and move and play; 

It is music time today, 

Hello, hello to David, hello."

Whoever believes in me, though he die, yet shall he live.  John 11:25

Tootsie Roll Talking and Other Good Things

Wade's speech therapist suggested having him chew part of a Tootsie Roll before doing oral reading in order to wake up his sleeping muscles and encourage clearer enunciation.  Good idea! Wade likes that therapy so much that he sneaked into the pantry and ate nine Tootsie Rolls before breakfast one morning.  But he forgot to throw away the wrappers.  Busted!!

Even better than Tootsie Rolls are sausages, which he thinks should be part of every breakfast.

Doing these magnetic Melissa & Doug pattern blocks has been a bit difficult for Wade's fine motor skills.  But over Christmas vacation we tried again and voila!

He did the robot man all by himself...

...and the swimming birds!

Folding the cleaning rags and dishtowels is another good OT project. 

Woodside Kitchen provides plenty of rags to fold...

...and sauces to eat (along with the Tootsie Rolls and sausage).

And painting is a delight too.

What will it be?

Whatever it is, using one brush at a time is too slow.

We like ambidextrous art...

...almost as much as Christopher's edible art. 

Yum!

I think this was supposed to say "Ha Pe Nu Year".  Somehow the word Mom appeared mixed in with all the rest.  One of life's Ha Pe little surprises.

Midnight Sky and Silent Stars

Sixteen years ago, Steven Levy wrote a book entitled Starting from Scratch: One Classroom Builds Its Own Curriculum.  His insights into the classroom are outstanding.

But also outstanding was his dedication of the book to "the unknown teachers across our land who go to work every day, hardly noticed, rarely appreciated, dedicating their lives to our children, our future."

One day while visiting the Tomb of the Unknown Soldier, Levy imagined a similar monument dedicated to the unknown teacher and inscribed with the words of Frederick Douglass to Harriet Tubman (with the word children substituted for bondmen and women).

You ask for what you do not need when you call on me for a word of commendation.  I need such words from you far more than you can need them from me...Most that I have done and suffered in the service of our cause has been in public, and I have received much encouragement every step of the way.  You, on the other hand have labored in a private way.  I have wrought in the day, you in the night.  I have had the applause of the crowd and the satisfaction of being approved by the multitude, while the most that you have done has been witnessed by a few trembling [children], whose heartfelt "God bless you" has been your only reward.  The midnight sky and the silent stars have been the witnesses of your devotion and your heroism.

So, Levy said, he dedicated his book to the "unknown teachers who guide and inspire children on their way toward freedom.  Let it give witnessing eyes to the midnight sky and applauding hands to the silent stars."

What more beautiful words could there be to honor those who labor behind the scenes--teachers, therapists, all those who have patiently joined us the last six years on the road to learning what we need to know.  You have gone above and beyond your job requirements to see Wade and us as more than a label, more than a chromosomal deviation.

For this, and more, we thank you.  God bless you, every one.

April

Susan

Karen

Jesse

Elizabeth

Darcy

   Ms. Motley

Laurie

Sandra

Christy

Lisa

Andrea

 David

Ms. Harper

Ms Lovett

Sara

Ms. Godbee

We are humbled by your gifts to our lives!