Thursday, November 25, 2010

Cherished Moments...

Today I was sitting quietly in another room
in our home when I heard laughter and the
everyday goings on of playfulness taking
place between my husband and our child in our
child's room.

But then my attention was completely captured when
I heard the voice of my husband saying to his child...

"I have this little boy...he's so sweet
I think he's made out of candy."

and Matthew giggles filled the room and my heart
danced with pure, sweet joy.

I am forever blessed and touched to have heard that
and I am so thankful for my loving husband and our
"sweet as candy" child, Matthew.

Saturday, November 13, 2010

What Time Is It?

The answer to this question has a story.

My child, Matthew, has complete Agenesis of the
Corpus Callosum. He is 17 years old but he
functions on the level of a young child.

Teaching different animals and their sounds is
fun for all kids.

Quick example: I will say:

"Matthew, what is this?"

*shows him a Pig*

He will use sign language and sign "pig".

Then I will say:

"What does a pig say?"

When you ask a child what sound does a pig make, they
can typically tell you "oink oink." But Matthew cannot
SAY it so we worked instead

(for a lonnnnnnnnnng time)

helping Matthew learn how to make the SOUND a pig

It was very difficult for him to learn.

After a VERY long time Matthew learned how to make ONE

It was a BIG event the first time that I heard him make
the sound. But the only time he could snort was laying
down on his back. If he would sit up, no more snort to
be heard.

After A LOT more practice and a long time, he mastered the
skill of making one single snort sound while sitting up!
It was a celebration!! Mama & Matthew piggy snorts filled
the room, accompanied with laughter.

There's no other way to say this except to just say it.
Matthew's Mama *points to self* is a goof. Matthew and I
are both silly and we laugh a lot.

I often make little piggy snort sounds for Matthew and
give piggy snort kisses. He can make one piggy snort back.
I wanted to help him learn to make several snorts in
a row so that became our mission and we worked on it.

The first time he decided to practice "snort, snort, snort"
all in a row was this summer right out in public while we were
outside walking on the sidewalk in a strip mall shopping area.

It took every ounce of ummmmphfff in Matthew to be able to
get into the groove (and caught me quite by surprise) not
to mention was very funny.

In order for him to make more than one snort he has to put
his whole body into it...his shoulders move up rigidly, his
head jerks and his whole body becomes a snort, snort maker.

Learning this new skill (and it is a very important skill)
*nods and grins* is something he worked on all summer long
and it typically happens at home on a whim.

But last Thursday we went to the market, Mama, Dad and Matthew


For whatever reason (of which I do not know) was
"snort snort" practice time for Matthew.

The grocery cart train...

Matthew pushing the cart, practicing his "snorting" extravaganza

Mama the caboose, laughing like a little kid

And Dad the Engineer, pulling the chugga chugga "snort
snort" giggling grocery cart down the aisle, saying
"you guys are crazy."

I caught the grown up in me saying out loud, through my own
childish chuckles, that there is a time and place for snorting
and the market isn't the time or place but it quickly became
apparent that the little kid in me (of which I am quite fond)
won and I relished in the fun and amusement.

He snort, snort snorted down the aisle, to the bakery
section where Dad bought a little cake and continued right
on practicing through the check-out.

The girl grocery clerk with dark hair and a big smile, who
rang up our groceries, was so sweet.

I told her (amidst Matthew the snorting machine) that he
just learned how to do this. She replied, with a smile,
"He's having fun."

So there it is, a little "oink oink" humor.

I guess you could say Matthew is a little ham.

But he is OUR little ham and I'm super proud of Matthew and
everything that he learns, even when he innocently has the
urge to practice learning right in the middle of a grocery

Those silly little snorts with a mixture of Mama's laughter
and Dad going along for the ride made for a very good day
that just happened to take place in a small, local, friendly,
family owned of our favorites for fresh fish,
but now it will forever hold a very special memory of a
certain sweet, little ham.

Monday, November 8, 2010

A Labor of Language (and Love)

Language and having Agenesis of the Corpus Callosum
can produce a variety of challenges when it comes to

I have wanted to include more information here about
the different types of speech and language issues that
some people deal with who have ACC.

Recently the parent of a 13-year-old child with
Agenesis of the Corpus Callosum shared a true story
snippet of insight in an ACC support group. With
permission from the parent, I am able to share it
here with you.

I love how the parent spells out the struggle and makes
it come to life by telling an actual conversation which
provides a glimpse inside the world of what it's like
to not only be the person with ACC and struggle with
words, but also what it's like to be on the reciprocal
side, trying to figure it out and piece it together.

The parent is replying to another parent and writes:

Celeste (13 cACC) was a vowel talker too! I used to say she
did not ever babble. No mamamma, babababa, dadadada. Nope!
But she wasn't quiet, she just made very loud vowel sounds.
Great to hear someone else had the same experience. Celeste
is 13 now and still is not one of great words. She is not
quiet, she is just not a great communicator.

Celeste still looses words. Words she completely knows but
when talking often just forgets them. Just yesterday for

Celeste: "Mom, can I have one of those things?"
Me: "What things?"
Celeste: "you know, the uh, um, thing"

Now mind you she is giving me some sign with her hand but I
had no idea what she was saying.

Me: "Do you eat it?"
Celeste: "Yes, mom! A, um, um, you know, um I ate it."
Me: "You ate it when?"

Now she is getting frustrated so she really cannot communicate.

Celeste: "UGH! Mom, come on. I just want a thingy. You know. From the fridge."

Oh, yeah, now THAT narrows it down!

Me: "Do you cook it?"
Celeste: "Yes in the microwave."
Me: "Is it big or little?"

Of course this is a stupid question so now she is mad.

Celeste: "MOM! A thingy. You heated it up yesterday and I ate it. For breakfast yesterday"
Me: "Ohhhh, a muffin?"
Celeste: "Ah, muffin, yeah, that's it."

"We have many many conversations like this."

The parent went on to tell me...

"Some words she has "lost" in mid conversation....Refrigerator,
broccoli, muffin, pencil. The list goes on and on. It is never
a word that is unusual and it is a word she may have just said.
Crazy! There are times I feel like I live one giant charade game!"

Saturday, November 6, 2010

Sunset Thoughts

Sunset Thoughts

Reflections in the water
peace upon the sky.

Put all your cares and worries
on waves of lullaby.

Illuminate your blessings
ponder them with love...

Sealed with a sunset
from God in heaven above.

© Sandie L. Davis 2010

Photo of the beach in Lincoln City, Oregon