Get ready for...

It's June now. And, in a few short weeks it will be summer! Ahhhh, my very favorite time of the year.

The sunshine, picnics, swimming, basking outside in the glorious warmth and all that fun.

One of the things that we (my son, Matthew, and I) especially look forward to is:

the summer reading program through our local library.

We have done this for several years--complete with buying him a very cute summer reading t-shirt at the library--to Matthew receiving a new favorite book (of his choice) from the library's prize book selection, upon completion of his reading chart and wonderful story adventures.

Today, June 1st, marked the 'let the summer reading program begin' day at our local library.

So, we excitedly picked up a packet (which includes a cute reading chart) and we will definitely be on board the reading train, that takes place promptly at bedtime, this evening in our household.

Reading books together is a marvelous way to incorporate language (and a whole lot more) into your child's learning process. Plus, it's just so much fun to find/discover/stumble upon the perfect books that capture your child's attention and stir up their imagination in such delightful ways, all the while helping them to learn and grow, through creative and expressive reading adventures and enjoyment.

Matthew has Agenesis of the Corpus Callosum. He is non-verbal, and although he is unable to read, he is certainly an avid reader of books and has his personal favorite books that tickle his funny bone--give him the giggles, send him into the super sillies, bring about so much anticipation that he is about to burst, and also has favorite books (pages in books) that cause him to all out belly laugh so hard that I sometimes (ahem) always have to stop reading because I'm laughing, too!

What's the best thing about reading? Well, for us, it's having the ability to take a book that Matthew loves and then dive in head first--acting it out--making the words and story jump right off the pages and straight into Matthew's mind's eye.

While I love to read the words to him, I can create a whole new kind of experience and reaction, and grasp his attention far greater, if I express those words in such a way that they help to conjur up images in Matthew's mind and make them more real, more meaningful for him, making them come to life, and expanding those words right off the page, acting the story out right before his eyes.

I will also pause quite often in a story to explain something we read, to point to a part of his body that we are talking about, to tickle him--if we are reading about tickling, to tell him something funny that happened to me while I was a little girl--(that has to do with the page we are reading), etc.

For example: In one very cute book, with a bouncy repetitive rhythmic rhyme, that we borrowed from the library...

A Summery Saturday Morning

...there is a page that talks about geese that won't back down. Matthew thinks it's hilarious when I stop the story (right after reading that page about the geese) and tell him about how when I was a little girl I was at a park with my family and we were down by the lake playing in the grass, with our shoes on, fully dressed, and there were some big geese...and one BIG white goose chased me backwards (and I start acting it out for him, moving backwards and looking behind me--as I'm telling him the story) and the goose was HONKING at me...honk, honnnk, honk, and that BIG goose nearly chased me right into the lake!

I definitely notice a huge difference in Matthew's learning abilities when we have an engaging reading program taking place in our home on a regular basis.

Reading (and playful story time) helps build/increase his understanding of language with such a natural, flowing ease.

It also helps him express and become equally involved in a story when he can use sign language for the words he knows, as I am reading, and when he can choose which book he would like me to read.

Of course, for a child who is able to read, or who is just learning to read, there are so many motivating and creative ways to help them learn through the use of books.

I encourage you to join a summer reading program at your local library or to conjur up your own homemade summer reading adventures.

Here are a few of my child's favorite books...
(click on the links below to explore more about each book)

click to see inside this book

Piggy Wiglet - by David L. Harrison

Little Donkey Close Your Eyes - by Margaret Wise Brown

Llama Llama Red Pajama - by Anna Dewdney

Goodnight, Me - by Andrew Daddo

Fred's Bed - by Marilyn Singer

Sheila Rae, The Brave - by Kevin Henkes

The Three Bears - by Byron Barton

You may like to view a previous summer reading post from July of 2010 (with a few additional books).

We'd love to know the favorite books that your child adores and loves to read.

Read what others are saying by clicking on the "comments" below.

Please consider sharing your child's favorite books in the comment section--because it's always so much fun to have new books to explore. And, definitely, please feel free to elaborate and tell us what your child especially likes about their favorite book.

baby babble - BONANZA!

What do you do when you have a teenage non-verbal child, who has Agenesis of the Corpus Callosum, who begins to babble and jabber (the beginning sounds and word approximations that are typically made by a baby/toddler) ?

Well, after you get over the amazement of hearing this new development taking place before your eyes and ears (many years after the typical speech timeline)...you roll with it (despite their age) and you encourage them to keep making sounds, you help them to put sounds together, and you might also want to consider seeking the help of a trained speech language pathologist, who can support your endeavor to teach your teen or older child to learn to produce sounds and verbally speak for the first time.

When my son, Matthew, was a baby and toddler, he didn't really babble or baby talk, and he didn't make very many sounds. He received speech therapy but when it became apparent that he needed an alternate way to communicate, we began working on using sign language and augmentative communication, (which we still continue to use and encourage).

However, I still always worked with and encouraged my son to 'talk' verbally by becoming his mirror (sitting directly in front of him making different sounds very slowly using my mouth and allowing him to watch me--hoping he would attempt to mimic me).

He rarely made a sound and would simply, but very intently, watch my mouth. He also loved to watch his own mouth in a mirror and he would make faces while engaging in mirror mouth play, which amused him greatly.

At age 7 he said his first word, "buh-bye", after he and I had worked on it together for almost the entire school year.

He also took his first steps at age 7, which I was told, by his developmental team at the Children's Hospital, defied the textbook odds!

Getting back to the babbling, which is something that my son has been doing for awhile now.

I have been looking for ways to work with him to develop/enhance his verbal speech and help him hone those delightful sounds, he is making, into words, which he is actually already beginning to do a little bit.

For example, he has learned to SAY: "puppy", "bubble", "papa", and he is trying hard to say other words such as: BALL, BOWL, BABY.

He is also (with my encouragement) making the first sound of a word (using his mouth)--even though he isn't able to speak the entire word. If he knows the "sign" for the word, he will sign the word (using sign language)...and then I will smile and say "yes" but will still encourage him to also SAY the first letter sound of that word, with his mouth.

For example: we will work on the word MILK and he will sign the word for "milk" when I say it, but I will help him to try to SAY the "M" sound "mmmmmmm" and he will repeat it, "mmmmmmm".

For some words, he will try to verbally speak the entire word, which may sometimes sound very close to the word (the actual sounds--and even the correct number of syllables) or may not--but he is trying and I am encouraging, and celebrating, each and every effort on his part.

I am impressed, thrilled, elated, jumping for joy and although I don't know if he will some day advance to verbal speech, I won't let that stop me from trying, trying, trying, enthusiastically encouraging him, and hoping.

I tell my son that I love that he is talking to me. I also tell him numerous times, as often as possible, with a big smile on my face, and and an outpouring of encouragement from my heart...

"You are talking", "I love it when you talk to me", "Tell me more"...

And he replies back with beautiful babbling stories and important things he wants to tell me.

It's not just me and his dad noticing this big bonanza of sounds, and long-winded babbling, taking place. He is also babbling out in public, at his hairdresser's, at the grocery store and anywhere else he feels the urge to express himself.

Sometimes he babbles a variety of sounds in a very long string of quick jabber that (as his mother) I know perfectly well HE knows what he's saying--even if the rest of us aren't quite sure.

Some of his babbling is definitely playing with sounds and exploring, but sometimes he will get in front of my face, seeking my attention, and he will try very hard to verbally tell me something. His speech pattern will slow way down and you can see him thinking as he very slowly produces what's on his mind, using a variety of sounds and careful movements of his mouth. I wish I knew what he was saying (and sometimes I do--simply because I know him and I know what he wants or what he is asking to do--like play games, music and videos on the computer, etc).

Several days ago I stumbled upon a blog that has been a Godsend! Thanks to Tori, Jake's Mama and author of Jake's Journey to be a Little Man, I discovered the exact tools that I have been desiring/looking for, that perfectly match my son's learning style, when it comes to watching mouths in the mirror and viewing videos of mouths making sounds, to help promote verbal speech.

After carefully considering and exploring the different products, I chose to purchase the following VAST speech "apps" in itunes, created by SpeakinMotion, for my son to use on his iPad2:

VAST (Video Assisted Speech Technology) is created for use on the iPhone, iPad and iPod Touch.

click to view a video sample of VAST Autism 1-Core below:

VAST Autism 1 - Core (also available in Spanish)

and

VAST Pre-Speech Oral Motor

They were an instant hit with Matthew and with Matthew's Mama, too!

He grabbed the iPad and began staring at each close-up video of a mouth moving making a sound or a word, and intently watched, then tried saying the sound or moving his mouth, then looked up at me for a dose of Mama make the sound for me, and went right back to his video mouth-watching on his iPad!

At 19 years of age, my son is bursting forth with babble, making a variety of bilabial sounds (consonant sounds using both lips: "m" "p", "b") and is also making some alveolar sounds (consonant sounds made by the tip of the tongue against the superior alveolar ridge [on the roof of your mouth, just behind your upper front teeth]: "n", "t", "d", "s", "z"). And, I will continue to help his babbling blossom into the beautiful potential inside of him.

The moral of this story is:

Don't ever give up hope, or think it's too late for your child to learn something new developmentally or educationally, despite their age.

The VAST apps are discounted 20% now through May 15, 2013 (just a few more days) in honor of their "Autism and Stroke Awareness Matters campaign."

Websites below: (that I found helpful in my exploration)

Proactive Speech-ipad technology for non-verbal individuals with autism

Consonantly Speaking-SpeakinMotion Application Reviews
This is an Speech-Language Pathologist's detailed reviews about some of the VAST "apps". Please note that her review is from March, 2013 and the giveaway is now closed. However, her review is quite helpful and informative.

Jake's Journey to be a Little Man-Vast Autism 1 Core
Thank you Jake's Mama, Tori, for your wonderfully helpful and very informative website, which led me to learn about the VAST speech apps! ♥

I welcome and encourage all of your comments.

And, if you use a specific speech "app" (or other speech therapy tool) with your child/loved one and find it helpful, please mention it specifically by name, and feel free to give as many details as you are comfortable sharing, in your comment.

disclaimer: I did not receive any monetary compensation from the company who sells the products mentioned here. I purchased the VAST "apps" (at my own out-of-pocket expense) as a tool to help encourage verbal sounds/speech in my child who has agenesis of the corpus callosum.

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
makes....*snorrrrt*

It was very difficult for him to learn.

After a VERY long time Matthew learned how to make ONE
"snort".

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

And.....



For whatever reason (of which I do not know)...it 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
aisle.

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 market....one of our favorites for fresh fish,
but now it will forever hold a very special memory of a
certain sweet, little ham.

Summer Reading

There are so many fun and wonderful things to do
during the summer time with your kids.

This summer one of the things that I decided to do
with my child, Matthew, who has Agenesis of the
Corpus Callosum, is the summer reading program at
our local library.

Matthew is very fond of books and has always loved
looking at books and listening to me read to him
since he was a toddler.

I am a big fan of borrowing books from the library.
It affords the opportunity to read and enjoy so many
new books with your child without spending the
money to buy each and every book that you read.

Of course, there are always a few favorite books we
discover that Matthew loves to read over and over
and those are the books that I will gladly
purchase for him (new or used) and add them to our
own book collection.

Several months ago when I was researching information
for the ACC Reading and Comprehension document,
I stumbled upon a particular author who writes
children's books by the name of Karma Wilson.

So we borrowed some library books by Karma Wilson.
They are a big hit.

A few of Matthew's favorites are:


Bear Snores On by Karma Wilson

We love this book! Mama and Matthew both. The
rhythm of rhyme carries the story along and
gives an appealing catchy quality that keeps
Matthew's attention. The "bear snores on" is a
phrase that appears often on the pages. Matthew
will anticipate it and is always ready to add his
own snoring sound effects. He laughs often
through this book when "wee slurps" (deee-licious),
"big burps" and one enormous "achooooooo" abounds.
This is a very fun, interactive book to read with
your child.

Check out the cute video clip of the book...

Bear Snores On



Matthew also likes:


Sleepyhead by Karma Wilson

A very sweet bedtime story with a mantra that makes
Matthew laugh. Three words that even my child (who is
non-verbal) can convey when it comes to bedtime...

"Just one more"

I also pay close attention, while reading blogs, to
the books that other kids like. I have found two
very special books that are Matthew's favorites
this way.

The first book came from reading one of my favorite
blogs about "Bugg" who has ACC. His Mama showed a
book called Happy Mother's Day by author Steven Kroll
on her blog and that's how I discovered what turned out
to be one of Matthew's most requested bedtime stories:


Pigs in the House by Steven Kroll

This rhyming story about three pigs who make
a "great big pig mess" is amusing and very cute.

Thank you bunches and bunches, Bugg's Mama.

And one more story we adore came by seeing a
picture of the book on another favorite site of mine...


Sea, Sand, Me! by Patricia Hubbell

An adorable book about spending the day at the beach.
We actually took this book on our recent family beach
trip. It's a favorite book of Matthew's and one that
he chooses to read every night.

Take a sneak peek inside the book.

Thank you lots of bunches, Violet and Mahaela's Mommy.
Violet is nearly 4 months old and she has agenesis of the
corpus callosum.

We are still exploring books this summer from our
local library and I have a few new stories on hold
that I can't wait to get and read with my child,
Matthew.

Have fun this summer and enjoy reading.

Does your child have a favorite book?

From pre-school to high school...I'd love to know
what your kid's favorite books are.

Sensory Play and the Cello

My child, Matthew, has Agenesis of the Corpus
Callosum.

He loves music!! We have been taking him to
music therapy for about a year.

One of the many instruments that Matthew has been
playing at nearly every music therapy session is
the cello. He is not taking music lessons.
He uses the bow and also his fingers to
play the cello along with his music therapist.

Now typically a person plays the cello with a
bow or their fingers.

NOT Today!!



At today's session his music teacher, Marion, placed
Matthew's bare feet on the cello and then SHE played
the cello with the bow.

Matthew absolutely loved the sensory input that
he got through his feet each time his music
therapist moved the bow across the cello strings.

The moment the bow stopped moving, Matthew's
fingers went to work signing "more, more, more"
and this cello-playin feet-thrivin duo created
a sensation that lasted about 15 minutes.

Now here's where the beautiful music part appears.

The cello was then removed from the floor and
placed upright for Matthew to play. Matthew played
the cello for another fifteen minutes...using the bow
for about 10 of those minutes and his fingers for the
other five. This is the longest and most remarkable
cello playing session that Matthew has had in the
entire year.

My husband snapped a picture of Matthew with his
feet on the cello and when he witnessed Matthew's
remarkable cello playing accomplishment [post
cello feet sensory input] he said,

"I was surprised how well he did playing the
cello after she played it with his feet on it."

"It's like he just became more aware."

The sensory input that Matthew received through
the musical vibrations to his feet allowed him to
play the cello with the bow for a much longer
period of time and he did a better job of holding
the bow himself (only needing help with his fingers
on the bow a couple times). In the past he would
only bow for a very short period of time and he
needed much help with his finger placement on the
bow. He would also let go of the bow often and
need help to grip it again.

He was also much more attentive and focused on his
cello playing and he listened closely to the music
and sounds that he was making.

Now, I have to tell you that I could kick my own
backside because I didn't attend today's music therapy
session and I wasn't able to witness this musical
extravaganza sensation for myself. Matthew's dad took
him today, took a photo with his cell phone...and
remembered to tell me.

Revealing the story here for you to read took a full
fledged dental chair interview between Matthew's Mom
and Dad.

Sensory input is fascinating and when you discover
one of those sensory input moments that allows your
child to be awakened in such a miraculous way, you
just want to jump for joy!!

UPDATE!!
watch video of cello input to his feet from another music session.

I sit in a chair just a few feet away from Matthew and can feel the strong vibrations from the cello in my own feet on the floor.

When Matthew was very young, he also had a similar
experience during his physical therapy sessions.

If the physical therapist would put Matthew on the
platform swing at the very beginning of the session
and do a lot of spinning and swing movement with Matthew,
he would respond to the entire physical therapy
session much, much better. Again, the sensory input
for Matthew that came from the swinging, twirling,
spinning, moving swinging made a world of difference.

What type of sensory input do you notice helps
your child? Or if you are a music therapist or
other therapist I'd love your input as well.

Matthew's Music Therapist is Marion. She
founded Octave Music Therapy.


“Music speaks what cannot be expressed,
soothes the mind and gives it rest,
heals the heart and makes it whole,
flows from heaven to the soul.”
--Author Unknown

Take a Leap of Faith..!

We recently took a BIG Leap of Faith!

We made the decision to attend church
for the first time in a very long time.

Our child, Matthew, who has complete Agenesis
of the Corpus Callosum is developmentally
delayed in all areas. He is 16 years old.
However, he functions on a very young level.

We cannot leave Matthew in the nursery or
in children's church alone because he requires
someone to stay with him due to his delays and
his special needs.

When you have a child who has special needs
there may be times when you find yourself
becoming isolated from some activities for
various reasons that will depend upon your
own particular circumstances.

The isolation may be partly a result of your
own fears and concerns that you wrestle with
in your mind. Those fears and concerns then
further prevent you from seeing anything but
additional distance from the place you want
to be.

In our case, Matthew does not have behavior
issues. Quite the contrary. He is very sweet
and full of love and kisses, lots of smiles and
is a genuinely happy boy from the time he wakes
up until he goes to bed.

We were concerned if he would make noise
and babble sounds outloud during a quiet
time or during the sermon. Also, he
struggles with problems like having a lot
of gas and burping.

We were unsure if a gigantic, loud burp
would burst forth from his mouth during
church service or (God forbid) from the
other end.

But the reality is he doesn't do those things
on purpose or to be disruptive and yes those
things may happen (even while sitting in church)
but we put one foot in front of the other
(and determined to try it)...we went to church
despite our fears and concerns.

Our first Sunday went beautifully during church.
Matthew did great! We sat at the back of the
church in the last row on the aisle (so we could
easily get up and step out if need be) and sat
Matthew in between myself and my husband during
the church service. During the service Matthew
would lean to kiss me and get a kiss, then lean
toward his dad for a kiss and this became a
sweet ritual throughout the entire service.

We also brought something he likes to do to keep
his hands busy. It was such a blessing to step
out of our isolation, join the community and
have fellowship.

Last Sunday also went very well. Matthew loves
music! We stand up often during the service
to sing songs and Matthew's head moves from
side-to-side while the sounds of singing
voices and melodious music fill the room.
Again, the sweet kissing ritual took place.
He is happy! We are happy!

Did he make some noise? Yes, this time he
did.

Did he burp out loud? Yes. He didn't do
it on purpose and I have come to terms
with the fact that he will probably do it
again. But, as much as we are both a bit
concerned and embarassed, we won't let it
stop us from going to church.

Last night my husband said to me that he
was worried while sitting in church last
Sunday that Matthew was going to let out a
huge, loud burp and it surprised me that he
had those feelings. I didn't really think
that my husband felt awkward like I do about
those kinds of things.

Is there something that you have stopped
doing; something that you want to do as a
family but aren't sure how or if it will
work due to your own situation..?

I encourage you to make a decision to try
whatever that something is that you have
become isolated from doing and to take
your own Leap of Faith..!

Destiny...

"Life is like a box of chocolates...
you never know what you're gonna get."

That is a famous quote from the movie Forrest
Gump.

Fifteen years ago my husband and I went to see
the movie Forrest Gump at the movie theatre.

Matthew was a baby then...only nine months old
at the time.

My parents watched him for us so we could go to
the movies.

We had just learned about Matthew's diagnosis of
complete Agenesis of the Corpus Callosum when he
was four months old so we were in the beginning
stages of our journey having had only five months
to deal with it.

Little did I know that when we sat down on the
theatre seats for a night out as husband and wife
to watch Forrest Gump that I would be filled with
tears and find it emotionally difficult to enjoy
the movie as I watched little Forrest Gump struggle
to run away, while wearing leg braces, from the kids
who were being mean to him.

I know that the movie is wonderful but at the time
I was stuck in my own emotional whirlwind of
wondering if my own child may be disabled, wear
braces and have other possible challenges.

Rewind several years earlier before Matthew was
born. My husband and I dealt with infertility for
many years before we decided to adopt a baby.

When we made the decision to adopt, we applied
through Children's Services Division but were
told that the chances of us being able to adopt a
baby or toddler were slim and that it would be
more likely that we would adopt an older child who
would probably have some challenges such as
physical, mental or developmental disabilities.
We were required to take several classes before
we could adopt through this agency.

We only took one class and I knew that I was not
able to proceed further down this avenue because
my heart's desire was to adopt a baby. I did not
see myself as being the mommy of a child with
special needs.

So, we applied through a completely different
adoption agency and we were chosen by a birthmom
who was eight months pregnant...Matthew's birthmom.

Fast forward sixteen years later and our
'baby', Matthew, celebrated his 16th birthday
on October 1, 2009.

We took him to the beach and stayed overnight a few
nights in Seaside, Oregon to celebrate his birthday.

Our last night in the condo I was searching through
the cable guide on the television and saw the movie
Forrest Gump listed so I switched the channel and
began watching the movie.

It made me cry several times though now I was able
to see the movie in a different light and my tears
flowed in response to the beauty of the movie, the
story of love, the magnificent way in which
Forrest Gump was able to love unconditionally.

At one point in the movie Forrest Gump's Mom
explains to him that it was her destiny to be
his mom. Then he wants to know what his destiny
is and she tells him that he will have to
discover that for himself.

I ended up becoming the Mom of a child who has
special needs.

I believe that it was my destiny to be Matthew's Mom
and that Matthew's destiny is yet to be discovered
but will unfold one day at a time...

When we think we are in complete control of our
own destiny I think that is the time to stop and
realize that...

"We toss the coin, but it is the Lord who
controls its decision."
~Proverbs 16:33

Matthew had fun opening his birthday presents,
playing with his new toys, taking walks through the
town, riding the carousel several times, and
spending time with his grandparents who came
with us.

While walking along the Seaside turn-around
boardwalk that overlooks the beach and ocean
we saw this beautiful sandcastle...


Today I bought Forrest Gump on DVD and it will
always hold a special place in my heart.

Friends

So many kids who have Agenesis of the Corpus
Callosum have difficulties to varying degrees
with friendship and socializing.

It was much easier for me to include Matthew
in social groups in the community and in the
school when he was younger. However, when a
child begins to get older in years but lags
behind developmentally it becomes more
difficult to find places to include your
child for socializing.

When Matthew was much younger and entering
school I made sure that he was mainstreamed
50% of his day for the social benefits it
would provide because Matthew is very social
and loves to be around kids. He learns much
from watching other kids play.

I also took Matthew to a community music
class when he was about 4 or 5 even though
the class was for much younger kids. It
worked nicely.

However, as a child moves out of the grade
school years and becomes a teenager (but still
plays like a grade school child) it is a
struggle (and sometimes heartbreaking) to
know how and where to include your child
in activities so they will be around
other kids who are doing things that are
interesting to your child.

I have cried a few tears over this topic
before and I also went over a teacher's
head at school and helped Matthew be able to
go to a mainstream music class when he was
in junior high school.

I have been told by a community music class
that they felt that music therapy would be
a good solution for Matthew to have music.
Another teary-eyed moment with the feeling
of being turned away from something that
Matthew would enjoy before he was even allowed
to experience it and once again being put into
isolation away from typically developing kids.
Not to say anything bad about music therapy.
I think it's wonderful and we take Matthew to
music therapy twice a month but we have yet
to find a music therapist in our area who has
a group music therapy class.

Unfortunately, we live in a world that needs
to learn how to better include and welcome
with open arms people who are different.
With more inclusion comes more acceptance
and understanding by society, I believe.

Well, last night we had one of those moments
that every parent wants for their child who
doesn't have any friends.

Matthew's dad and I took him out to ride
his bike in the neighborhood after dinner.
It was a beautiful, sunny evening and
Matthew was happily riding along pedaling
his trike when one of the neighbor boys
(who is much younger) came riding up on
his own bike.

The neighbor boy spent the whole time
riding bikes with Matthew and talking to
Matthew and us. The little boy is 7 years
old. He was making Matthew laugh saying
all the silly things that Matthew likes
about monkeys and then acting like a monkey
complete with monkey sounds. It was
adorable.

Because we don't have sidewalks in our
neighborhood we ride bikes along the road.
We live on a dead-end street that is not
busy. While riding along we saw a hotdog
laying in the road and started laughing.
The neighbor boy rode his bike over the
hotdog and squished it. It was very funny
and became a game. Matthew tried to ride
over it with his trike but his tires missed
it so the neighbor boy took another turn
on his bike aiming at the hotdog with his
tires and once again smashed the hotdog.

I am very thankful that the neighbor boy
spent time riding bikes with Matthew last
night. It is a night that put a smile on
my face and still makes me smile today. :)

Low Tone

When Matthew was a baby (before he was
diagnosed with agenesis of the corpus
callosum) the doctor wrote in his chart
notes that he was "floppy." I didn't
discover this until I made the choice to
change pediatricians and I got a copy of
Matthew's chart notes. I later learned
that "floppy" also means low tone.

Then Matthew was diagnosed with ACC when
he was four months old via a CT scan.

Matthew was very low tone as a baby and
toddler and a little guy. He had very
little strength in his muscles to do
what most little babies and toddlers
can easily do.

I can remember wondering if Matthew would
ever gain more strength in his muscles and
I worried that he may struggle with
low tone without significant improvement.

When I would change his diapers at an
age where most babies would wiggle and
squirm and struggle to get away, Matthew
would move only a little bit and I could
easily keep him where I needed him to be
because he didn't have the strength to
get away.

As I was sitting at the computer today
that once little guy (who will always be
little in my eyes) stood next to me and
I was playing a tickle game with him. I
reached out both of my arms at him with
wiggly tickle fingers and began to sing
a silly song about "Now I'm gonna tic..."
and those two little boy hands grabbed my
own arms and prevented me from tickling
him while he was laughing at our little
game.

He is already stronger than me and definitely
is no longer that "floppy" and low tone
little guy I once worried about.

Now it's the other way around. I feel like
a little girl up against my own very sweet
and super silly BIG boy.

A Mom Knows Her Child So Well...

Because my son, Matthew, who has complete Agenesis of the Corpus Callosum, loves music so much I always keep my eyes open for music and songs that will help him to learn because there is just something lovely about how music can teach and create a connection to learn where sometimes mere spoken words may not be able to reach.

I discovered a song sound clip while searching online that Matthew really liked and was responding to. The song is called “Arms Up” so I did the good ole’ check the online local library catalog but couldn’t find the particular CD called “Arms Up, Keep Moving” by William Janiak that I was looking for that had the “Arms Up” song. I was, however, able to find another CD by William Janiak called “It’s Fun to Clap” so I went to the library and borrowed that one instead.



Songs on This CD Include:

1. The La Song
2. Shrug Your Shoulders
3. It's Time For Music
4. Boom! Boom! Boom! Boom!
5. Shirt, Shirt
6. Here Comes The Cow
7. It's Fun To Clap
8. Hop Like A Bunny
9. The Body Care Song
10. Make Your Eyes
11. Hands Go Up and Down
12. I Like To Dance

Well, I listened to the CD by myself first without
Matthew and I thought it was uhhmmm…unusual and a little bit weird. I make that comment only because parts of the music during the songs have a different unique, twangy sharp and sort of shrill sound. I knew that Matthew wouldn’t like it.

Some time went by and the due date for the CD to be returned to the local library was approaching. I was just about to take it back to the library and I thought to myself…you should really play it for Matthew and let him hear it before you return it. Ok, I thought. So, I put the CD in the player and turned it on for Matthew to listen to (knowing that he wasn’t going to pay much attention or like it) but boy was I ever WRONG! I thought I knew my own child well enough to determine what HE likes (and I usually do) but this time I am so thankful that I listened to that little voice inside and gave Matthew the chance to make his own decision because that entire CD full of, what I first thought to be “unusual and a little bit weird”, music (please, please forgive me Mr. William Janiak) turned out to be a CD that we both love and adore and spend time listening to.

The very thing that I didn’t like so much about the music is the very thing that Matthew likes and it’s the thing that, I think, keeps his attention….well, that and the fun songs and words too. I really do love it too. And Matthew….well, he absolutely loves the CD. It’s a very cute CD and the songs allow him to become engaged and interact with every song that is sung. He listens intently to the words being sung and then he will do many of the things that the song lyrics are telling him to do. It’s great!! In fact, we both like the CD so much that I purchased a copy of “It’s Fun To Clap” for our own music collection.

The CD has songs that are geared for early childhood and special needs and they are sung with a slow and repetitive style that is often times a very helpful thing for many kids who have Agenesis of the Corpus Callosum and who are developmentally delayed. You can listen to a sample clip of one of the songs on the CD called “Hop Like a Bunny”.

Oh and by the way…if you want to hear the song clip of “Arms Up” that I mention at the beginning of this post…(the song that began my search in the first place) you can listen to it here. This song is on the “Arms Up, Keep Moving” CD.

I learned a very valuable lesson about being a Mom
and especially about being a mom to a child who
is developmentally delayed in all areas and is non-verbal. I will definitely be respectful of Matthew and allow him the opportunities to decide for himself what he does and does not like no matter how much I think, as his mommy, that I already know since I know him so well? ~humbly loosens my apron strings a little bit and sighs~

Matthew is his own person with his own likes and
dislikes and it’s only right to give him the chance
to make his own decisions as much as possible
and to help him learn and give him the opportunities to become as independent as possible. I thought I was doing a good job to encourage this skill but after this eye-opening experience I think I need to re-think, broaden my horizons and allow Matthew to reach for the stars…shoot for the moon and find his own wonderful and beautiful horizons a whole lot more.

William Janiak is a Registered Music Therapist
and you can find more information at his website:
WeLearnByDoing.com

Before You Open Your Mouth...

I was busy in my kitchen the other day and caught a glimpse of my son, Matthew, on his knees on the kitchen floor next to the dining room table reaching up and getting into all his DVDs that were piled on the table above him. Realizing how quickly he could make that piled up stack of DVDs disappear into a mess on the floor and already seeing the beginnings of that happening I continued to do what I was doing in the kitchen while telling Matthew to put the movies back up...Matthew, put the movies up...put them back on the table...put it up, Matthew. Matthew put the movie up.

I turned to see Matthew now sitting on the floor in the living room with his hand high above his head holding up that DVD movie with a great, big beautiful smile on his proud face. I had to laugh under my breath and then I praised Matthew and told him how proud I am of him because he listened to mommy and he did EXACTLY what mommy said...he put the movie up!

I assumed Matthew would know what I meant for him to do and because I was busy, I didn't slow down long enough to think before I opened my mouth and proceeded to give Matthew directions. It humbled me and made me once again aware that I need to be very aware of how I word something for Matthew and to give him clear, precise directions so that he is able to easily understand what I am saying, asking or wanting from him.

I am usually careful about how I word things with Matthew when I am talking to him or asking him to do something. Sometimes, for Matthew, when he finally understands something I need to use that same phrase everytime I ask that particular task of him. I know this to be true for some other kids who have Agenesis of the Corpus Callosum as well.

Often times some kids with Agenesis of the Corpus Callosum will take things that are said very literally and will proceed to follow those verbal directions exactly.

I will do my best to think before I open my mouth now and be aware of how I word something when talking to Matthew and I will never forget his hand high above his head holding his movie up and his big smile.

Do you have a cute or funny story to share about your own child. If so jump right in and feel free to post a comment. I'd love to hear all about it.