Baby Steps

He pauses, carefully considering the uneven earth beneath his feet. He steadies himself then slowly, carefully, deliberately lifts one foot and takes that first step. A grin spreads across his face and he glances up at me, clearly relishing his accomplishment and my (unabashedly giddy) claps and cheers. Another step, this one faster and less cautious, then another, and another… until he is half-running, half-falling towards me. He reaches my arms just as his balance gives way completely, and he falls into my embrace. “Good job, Zeke! You did it!” I tell him, but he is already off with some new adventure in mind. It was only a few feet really, a handful of steps, but he and I are on top of the world.

He falls a lot, gets back up, tries again. And again. And again. Sometimes he makes it several steps in a row, sometimes just one. Sometimes he lands hard and it hurts (balance and protective response-aka catching himself- do not come easily for this guy), but he is undaunted.

All the while I watch him exploring the ever-widening world around him and I am amazed at his perseverance and resilience. Every worry I have ever had for him, every tear I have cried wondering what his future will hold fades for the moment as I am reminded again how strong he is. Some would say stubborn. I think I have said it too. This kid is going places, and he’s not letting anyone or anything stop him. Maybe he will take a different path to get there. Maybe it will take him longer, maybe it will be harder, maybe he will have to get back up more often than most. Maybe “there” won’t exactly fit our culture’s skewed definition of success. But he’ll get where he’s going, of that I am sure. One step at a time.

I wonder sometimes how much I should write about Zeke’s development. I waiver back and forth between wanting to keep much of his story private, and wanting to shout from the rooftops how amazingly awesome my kid is. I compromise by choosing to write mostly about our ordinary, every day lives together (because really, we are quite ordinary). I don’t want him to be defined as “that kid with Agenesis of the Corpus Callosum,” with all of the stereotypes that may entail, but I also don’t want him to ever feel that who he is is anything to be ashamed of or keep hidden. In many ways I am quite fascinated by the way his brain works and it’s ability to overcome tremendous challenges. Each accomplishment seems all the more amazing when I pause to consider everything it took to get there. My hope is always that people read my words, and see my pictures, and are inspired and encouraged (as I am likewise inspired and encouraged by the emails and comments I receive every week from individuals who either have ACC themselves or know someone who does), but I am also well aware that ACC can look very different for others than it does for my son. We are blessed. And I don’t ever take that for granted or lightly. Ever.

With that being said, I do want to include a bit of an update. I know how valuable it has been to me as a mother to read about other families on this journey with us, and I think it is important to include some of our struggles in this story along with the overwhelming good. At 17 months, Zeke is doing quite well. He is eligible for Arkansas’s early intervention program, which provides him with two physical therapy sessions per week. At PT [physical therapy] he is continuing to work on skills like transitioning from sitting to standing, balance, increasing muscle tone, increasing his protective response, and beginning to walk. (He wears small foot braces that are basically inserts that fit into his shoes to help stabilize his ankles) He is making slow, but very steady progress in all of these areas. He seems to have a somewhat decreased awareness of his left side, probably related to his ACC, but it is more noticeable some times than others. For example, he has more difficulty catching himself if he falls to the left, and he occasionally seems to forget about objects in his left hand. He also seems to have a somewhat increased tolerance to pain, but that may just be his stubbornness! Although he picked up his first couple of words pretty early on (mama, baba, bye-bye), his speech has plateaued at this point and he really only uses a couple of words, and even those not consistently. He has been referred by his physical therapist to be evaluated for speech and occupational therapy in addition to PT.

For every thing that he struggles with though, there are so many other things that he can do. He stacks blocks, puts them in and takes them out of a bucket, gives (very slobbery) kisses, loves to share his snacks and toys, makes some pretty awesome truck noises, “dances” to music, taps out a pretty decent rhythm on his bongos or the piano, looks at picture books, chases the kitties, lights up the room with his
whole-face smile, climbs, climbs some more, oh, and did I mention he climbs?

But today, oh those early wobbly baby steps! They eclipse everything else. Never lose that determination, my son!

reprinted with permission from Jodean, the author as well as Zeke's Mama, who I believe would embrace all of your comments and thoughts.

Jodean's contact information can be found at Crazy Wonderful Life, where this very heartfelt article originally appeared.

Live, Love, Laugh!

"A good laugh is sunshine in a house."
-Anonymous


Bugg is a beautiful boy who, aside from having
agenesis of the corpus callosum, has the most
wonderful, happy-spirited laugh that echos
from deep within his soul and touches the hearts
of others with resounding joy.

The Bugg's *Special* Life is a blog that I fell in
love with from the first time I read it and I
always look forward to reading each new post
that Bugg's Mama shares. She celebrates life in
all it's spectacular moments and wraps it in a
package filled with love (and laughter) and
family.


Dear Bree, "Bugg's Mama"

I am so thankful to be able to get to know you
through e-mail exchanges and through all of
the uplifting, encouraging, inspiring words and
pictures that you share on The Bugg's *Special*
Life.

You are a blessing and you let your light shine so
brightly into the lives and hearts of so many people.

Thank you for allowing me to share Bugg's video
here for other people to see. ♥

Love,
Sandie - Matthew's Mama


"Laugh as much as you breathe and love as long as
you live."
--Anonymous




"A smile starts on the lips, A grin spreads to the eyes,
A chuckle comes from the belly,
But a good laugh bursts forth from the soul,
Overflows, and bubbles all around."
-- Carolyn Birmingham

Take a stroll through the Bugg's Life...

P.S. Bree, your house is undoubtedly filled with
super fantastic sunshine! ☼


"The most wasted of all days is one without
laughter."
--e.e. cummings

view Bugg's original video blog post

"Laughter is the sun that drives winter from
the human face."
-Victor Hugo


photos and video courtesy of Bugg's Mama

ACC - Meeting Milestones

Reach for Hope...then hold on to it always.

When your child has Agenesis of the Corpus
Callosum one of the most difficult things to
deal with is coming to terms with the unknowns of
ACC and learning how to deal with the uncertainty of
when your baby/child will meet his/her milestones.

When my child, Matthew, was a baby I had to stop
reading all of my 'what to expect' baby books for a
typically developing baby and put them away --
out of my sight.

I found it too difficult to read those baby books
for typically developing babies because my child,
who has Agenesis of the Corpus Callosum, was not
measuring up to those 'typical baby timelines'
for milestones.

Reading those books just caused me more grief.

In fact, back in 1998 this is what I wrote:

"Good-bye to baby books and their developmental
milestones timetables...
Hello sweet, precious child who will teach me more
than any book ever could!"

The other day I read a note on one of the ACC support
groups that I belong to. It was from a Mom who
I know that has a 6 year old child with ACC (plus other
medical conditions) in reply to another mom who has
an 11 month old baby with ACC.

The mom of the 11 month old baby with Agenesis of the
Corpus Callosum expressed a familiar feeling that I am
quite sure many other moms--myself included--will be
able to relate to:

"I'm getting a little down lately as it really seems
like its coming along so slowly and I'd just like to
see a BIG milestone!...It's so hard not to know what
his prognosis is."

I asked Sabra, the Mom of the 6 year old child, if
she would be willing to allow me to post her reply here
for others to read. She wrote back to me:

"Of course you can use my post, if I can help at least
one other parent then it is worth it. You can also feel
free to post my email address, if they want to contact
me for other questions or concerns."

This is her reply to the mom of the 11 month old baby
who has ACC:

"I have a beautiful, precious, and unique 6 yr old
daughter with partial ACC, hydrocephalus, etc. We
found out about Emily’s ACC at 5 months via MRI for
her hydro. I was told absolutely nothing in regards
to her ACC just that she needed to see a neurosurgeon
in the next 2 weeks.

Emily’s first 2 years were the hardest, just as one
doctor told me they would, with all the doctor’s appts
and therapy but it would get better once she turned 3.
At the time I didn’t believe him because we were seeing
doctors and therapist 4-5 days a week and I didn’t see
any end to it. But he was right, once she turned 3, she
started seeing her doctors every 3-6 months and now she
sees most of them once a year except her eye doctor she
sees every 6 months.

Emily taught us to appreciate the baby steps she took in
her development. Emily also started EI (Early Intervention)
at 9 months until she aged out at age 3.

Here is a little timeline of when Emily reached
milestones:

Sitting up= 1 yr

Crawling= 15 months

Walking= right before she turned 18 months

Talking=she said 3 words at 2 ½ years and then all
of a sudden at age 3, she started talking in 3-4
word sentences

Undressing self= 3 ½

Dressing self except shoes and socks=4

Putting shoes on byself(Mary Jane and slip on)=4 ¾

Able to put socks on by self= 5 ½

Self feeding= 18 months

Using utensils= 3 ½

Imagination play= 4 ½

Interactive play versus side by side play= 4

Writing her name= 5

Beginning reading=5 ½ but is slowly progressing,
math is her strength.

I have learned that any milestone she reaches or
does is a huge deal for us even if it is considered
normal development with other families. We have
learned by experience and talking with other parents,
our kids have to work much harder to do anything or
learn anything. I also discovered when Emily was in
EI if she was working on one skill, the others were
ignored or on the sideline, her brain is able to only
work on one skill at a time. So while we were working
on her feeding, her speech was nonexistent-but she was
still taking everything in and filed away to be used
when the time was right. Emily was blessed with having
her older siblings who loved to help her learn new
skills. Emily has taught them empathy, compassion,
understanding everyone is unique, big support for each
other, appreciation of achieving something that was
hard, and unconditional love.

You will be amazed at what your child is going to do.
You are going to look back in a few years and realize
how much he did accomplish. Have you taken him to get
his eyes checked? A good pediatric ophthalmologist or
neuro-ophthalmologist would be good. Emily’s vision in
itself is fine but she has no stereopsis vision-she
cannot see in 3D, and binocular vision disorder. She
also has Strabismus which she had 3 surgeries to correct.

It was recommended by parents on another group to get
her vision checked since it is midline and anything
midline can be affected.

When Emily finished Kindergarten (KG) this year, she
was given the Most improved student award, I was so
proud of her and how far she came this year in KG.
She also received a Math award, being able to count
to 100, and a Reading Award for recognizing the letters
in the alphabet and the sounds, and had the gold star
on it for being able to read all of her Word Wall words.
So if I have to pinpoint the first Big milestone, it
would have to be her KG year. Even her special ed
teacher, her OT, and regular ed teachers all said she
was not the same child at the beginning of the year.
They were even amazed at how far she came. To be honest,
when we had our first IEP meeting before KG, I asked
them if I would be able to hold her back if she was not
ready to move on to 1st grade. I was prepared to have
her repeat because at the beginning of the year, she
was really way behind. She seems to prove me wrong
every time. She was promoted to 1st grade with minimal
assistance, she will have resource for language arts
block only and may only need it the first 9 weeks and
the rest of the time she is in a general ed classroom.
She is still socially and developmentally behind about
a year to a year and a half but when I look at where she
was and how hard she had to work to get there, I think
she is perfect. It was recommended when I first joined
the ACC group, was to throw out the developmental
timeline, Emily had her own and would do them on her
own time. We just use it to get services she needs.

The hardest part for me was to not compare Emily to
other children her age or younger who were doing things
she couldn’t or with her own siblings.

If you have any more questions or want to email me,
please feel free to do so at weimerse@cox.net

Before you know it, in a few years this will be you
posting to a new mom your experience with raising a
precious and wonderful child with ACC. You will sound
confident and will be able to give the new parent help.

I hope I have helped you with sharing my journey with
raising a child with ACC. I have to say it is never a
dull moment and when you least expect it, it will happen.
It is also recommended to play music all the time-good
for brain development."

Sabra, mom of Emily 6 who has partial agenesis of the
corpus callosum, colpocephaly, arnold-chiari 1 malformation,
sensory integration disorder, strabismus and hydrocephalus
w/VP shunt, and mom to four other children.

Thank you so much, Sabra, for your willingness to
reach out to others and offer help, hope and support.



Look for signs of hope...they are there and
do exist...be sure not to overlook the small
signs of hope while you wait for the big
milestones.

hope@aracnet.com

Focus on the Positive

What are your child's STRENGTHS?

I can remember being asked this question by the
Early Intervention team that would come to our
home to work with Matthew on therapies when he
was younger. Matthew is my child and he has
Agenesis of the Corpus Callosum.

One of the questions they would ask me periodically
is:

"What are some of Matthew's strengths?"

I would nearly stop in my tracks and have to shift
gears. This question was actually difficult for me
to answer because my mind was always caught up in
all of his needs and challenges and I was focused
on everything he needed help with and his therapies
and what he wasn't able to do.

I would literally have to REALLY think hard just to
come up with one or two of Matthew's strengths.

I thought it would be fun to share what our kid's
strengths are in an effort to get to know them a
little better and to help focus on what they are
good at and what they CAN do.

I invited parents in ACC support groups to share
their child's strengths and I received a collection
of wonderful stories that I am thrilled to be able
to share here with you.


My son's strengths are 1: he is amazing in an
emergency situation which is crazy since he
has low fustration tolerance in other areas
but if there is an emergency he takes action
and helps out!
2) He is funny as all get out! He can make a
total stranger smile with his sense of humor.
3) He is very creative and a fantastic actor.
4) He is loyal to the core to his friends.

My son Shiloh is 9 years old and has complete ACC.
He is an amazing artist and can draw anything he
sees a picture of without tracing at all. He loves
math and is actually working above grade level in
math. This year, in our state's standardized testing,
Shiloh actually received a medal for getting the
score of proficient with distinction on the Math
test.

He has a giving heart and is always willing to help
those in need. He packed up many of his favorite
toys to send to Haiti after the earthquake and wanted
to send them right away to the kids who may have lost
their toys.

He has just learned how to ride a two-wheel bicycle,
and is SO proud of himself. He often asks me to come
out to the drive to watch "how fast" he can go. It's
amazing that he's learned to ride a bike and we're so
excited to do family biking trips now.

Nikki is 3 and her strengths are. . . . .

1. She is consistently happy 99.9% of the time.
2. She has the BIGGEST smile in Wisconsin! :) We call it
her "Movie Star" smile.
3. She is absolutely fearless! Had her first aqua-therapy
session last Tuesday and she was ecstatic in the water!
She'd never been in a large pool and it didn't concern her
in the slightest. She was dipping her face in, splashing. . .
the whole works! :)
4. She radiates this peace and love to everyone (no other
way to explain it). People get drawn in by her and then
she's got them hooked! :)
5. She learns very quickly considering her challenges. If
you show her something, she will try to do it.

My daughter Brianna is 2 1/2 C-ACC

1. She is very good at out-running mommy and daddy.
2. Especially good at picking fights with her big sister
then making up .
3. LOVE, this little girls main strength is LOVE she
loves EVERYONE (I swear she hugs strangers in the Market
and Target lol anyone).
4. Is super sneaky at trying to crawl up the stairs
behind mommas back.
5. Learned to throw a ball more than 2ft away from her (yay).
6. She can sign about 20 American Sign Language words.
7. Brianna speaks about 8 simple words (super adorable).
8. Gives the strongest sweetest hugs.
9. Always has the strength to overcome all her health
obstacles
10. Another major strength is her self happiness (this child
can really entertain herself and loves it.
11. Strong YELL and LAUGH you can hear this boo screaming
and laughing down the street!
12. Her strength to overcome her fears (such as walking over
grass barefoot, and riding the carousel and dumbo ride at Disney) she now loves both.
13. Putting herself to bed in her crib, self comforting.
(Major plus for mommy and daddy).
14. Being the greatest sweetest sister to Hailey and daughter
to the hunk and I :)

With much love,

Her mommy.

Hello Everyone!
This is such a great posting!

Hunter is 4 yrs old and his strengths are:

He is a happy, sweet and affectionate little boy!

He is starting to go poopy on the potty and making an
effort to do it all by himself!

He is very caring and empathetic to his younger brother
and others!

He loves to play and watch sports (EVERY SPORT!)

He knows his numbers, letters and colors…..and he likes
to count and wants to know how to spell words.

He can ride his bike with training wheels.

He can get dressed by himself (most of the time)

He loves Irish/Scottish music and he really likes to
sing along.

He can turn on the Wii by himself.

He can cut paper and is working on writing.

He just accomplished getting his face wet in the pool
(yesterday)!

My child, Matthew, who has complete Agenesis of the
Corpus Callosum is very happy all the time. People
who don't even know him often comment about that.
He smiles all the time, laughs a lot everyday and
he is very social. Matthew loves to be around other
kids and watch them play.

Matthew is very good at using the computer. He is
also good at using his touch screen augmentative
communication device (DynaVox V) and he can find
anything he wants to say using memorization to find
the exact screen that has what he wants to say.

Matthew can throw and catch a beach ball and other
small, soft balls very well and he loves to play ball
with his Dad.

Matthew really likes to play with remote control cars
and can do it by himself when the remote only requires
one hand.

Matthew can ride an adaptive trike really well by himself.

Matthew loves music. He plays his casio keyboard. He is
involved in a music therapy class where he gets hands on
to different musical instruments and he has been making
music on a cello. He has actually been holding the cello
and using the bow to move back and forth across the cello
strings.

Aiden (17.5 months) can run and bend down and
pick up toys, he is great at puzzles and knows
which direction books face and pages should be
turned! He gets mad when they are upside down!
Aiden can play the keyboard... He puts one finger
down at a time, plays a chord and looks up and
stares as if he is listening very hard... Also, he
loves to throw... Everything and can throw small
objects into buckets and he sings, in rhythm, to
his favorite songs using the sound "ah"! He loves
this old man, Dinah won't you blow, twinkle twinkle...
Oh and he loves the 50s song "mr lee". Except we sing,
" mr A! And he sings in tune to the circle song by
10,000 maniacs! He loves it! Also, in the pool,
while holding him under the arms on his tummy, he
kicks his legs! Oh, one more thing, he can drink
from a straw and understands everything you say
to him!


Erika 3, is a very fast learner!! She was in a
contained classroom this year, and doesn't need
one next year :)

what a great idea

Grayden is only a year old but his strengths are:

1-make you smile at first look at him

2-reminds me how to laugh daily (he is always being silly)
which makes me laugh

3-just adores his older sister

4-says mum mum dada and baba not specific but love to
think it is

5-has almost convinced my husband to buy us a dog because
his keen interest in them

6-is sitting independently working on getting into a
sitting postion

7-lifting up on his arms wanting to move

Most of all the happiest baby in the world he truly is
a joy


Trevor is 14 1/2 yrs old.

He can ride an adult trike. He can swim underwater.
He is the friendliest teen you'll ever met. That
smile will just melt your heart. He knows most colors,
all letters, some numbers. He can write his name and
some basic information. He can work his TV/VCR. He
puts his clothes on/off independently. He can play
simple games on a computer using a mouse independently.
Excellent hearing.

Just a few of his strengths.......


Right off the top of my head, here's a list of
my child's strengths.

She has a fine sense of humor.

She can play piano, including ragtime and 7-page
sonatinas. She also is good at playing duets and
accompanying others.

She trains and shows dogs, and has reams of ribbons
and shelves of trophies to prove it. She also did
well in the past showing cats and guinea pigs.

She does nice counted cross stitch and makes beautiful
beaded snowflakes.

She's an excellent swimmer, and also kayaks and
cross-country skis.

She's something of a computer whiz, having taken
a number of classes and also maintaining Facebook,
MySpace, Dogster, and Catster pages on the web.

She knows how to download music to her computer
and iPod.

She has good taste in friends.

Her softball skills were good enough to win her a
spot on her 8th grade school team.

She's a hard-working student, with wonderful study
skills.

She's a great writer, speller, and editor.

She knows more about dog breeds than anyone I know.

She remembers everyone's phone numbers.

She's a conscientious driver.

She plays a mean game of Mancala, Scrabble, or
double solitaire.

She has always had a good eye for putting puzzles
together.

She is a great volunteer for her dog rescue group.

She had a part in every play her high school performed
(and she was the only student to do so).

She saves money (and never fails to save me when I
need to borrow some).

She knows a lot of Spanish, and did extremely well
with a year of it in college.

She has a good vocabulary.

She's kind to animals.

I feel really blessed that before Emily was born
I had been doing energy work. I do acupuncture on
animals and studied the Silva method (similar to
The Secret). Those things gave me the right mind
set to help Emily. She signed her wants & needs
beginning at 9 mo. She knew about 100 signs by the
time she was 1 1/2 yr. She walked independently by
33 mo. She traveled to Phoenix, AZ (from PA) on her
1st plan ride at 11 mo., to Hawaii at 1 1/2 yrs.,
Disneyworld at 2 & 4, Bangkok, Thailand at 3 and NYC
at 4. She met 2 of my heroes: Kim Peek & Temple Grandin.
She speaks in short sentences and understands
more than most people realize. She has an amazing
personality and draws people to her like a magnet.
She was like a rock star in Thailand. She showed
compassion for pet owners during in home euthanasias
beginning at 3 yr. She shows amazing compassion for the
animals too. She understands the concepts of many
medical procedures and can bring equipment & supplies
on request. She loves swimming & horseback riding.
She's an avid Penn State football fan - attending most
games since before she was born. She's a brilliant and
amazing girl and the only thing to limit her success is
up to choices. I call her Einstein and always remind her
how smart she is. In 21 years I expect to see her accept
her diploma from Johns Hopkins School of Medicine...
that is if that's what she wants. Our kids have limitless
potential. Don't ever let anyone tell you otherwise.

My son, Alex, 13 years old, who has complete Agenesis
of the Corpus Callosum is very happy most of the time.

Alex is very good at using the computer & playing video
games. Alex was 1 yr. old by the time he showed interest
in the computer. I think he just loves all kind of
“screens”.

Alex can throw and catch any kind of balls. He is in a
swim & bowling team with special Olympics. He is a very
good swimmer. His PE coach tells us that he is a good
athlete; participates in all the sports the class offers.

He participated with his school team in a high jump
competition district wide. His final jump was 4’5” I
think.

Alex can ride a 2 wheeler, since he was 10 yrs old.

Alex loves music. Any kind of music. When he was a
little baby I use to calm him down with lullaby’s &
classical music. Now he loves to listen to his church
CD’s and he sings along with them. Alex was in the
choir group at Church. Now, he just likes to attend
the summer choir group and special singing occasions
during mass.

My son, Jon, has the following STRENGTHS.

1. good lookin
2. Sexy bod -- 5'5" , thin
3. likes to run -- will escape if doors are not locked.
4. uses a fork and spoon to feed himself
5. is happy most of the time -- smiles a lot -- hums happy tunes, and laughs out loud at funny things.
6. can ride an adult tricycle (with adult supervision)
7. Most of the time obedient to instruction
8. Assists in dressing himself
9. enjoys musical toys, audio and CD cassette players (some toys not age-appropriate for him but satisfying never-the-less.)
10. can spend hours focusing on musical toys while multi-tasking with the VCR and watching TV at the same time.
11. Can do the following tasks at his office either independently or with supervision: stuffing envelopes, sealing envelopes, putting labels on envelopes, stapling, typing addresses on envelopes with a programmable typewriter (wheelwriter 5), shredding paper. He is a bulk mail specialist and gets paid for his work.
12. He assists with setting the table at mealtime and clearing the table with supervision.
13 He has good eye-hand coordination at catching and throwing balls. (and other objects)
14. He can swim independently in both shallow and deep water
15. He can "work out" at the YMCA on cardio equipment with supervision.
16. He uses sign language -- about 300 words.
17. He can make his wants known with gestures and sign language.
18. He assists with some household chores.
19. He can ride a horse with a lead rope and loves it. He has excellent balance.
20. He has participated in Special Olympics in the past.
21. He has pretty good finger dexterity and can easily flip light and fan switches.
22. He is able to swallow pills with no difficulty.
23. He has excellent rhythm and possibly perfect pitch.



My son (Kenny) has ACC, he is 4 years old and his
strengths amaze me everyday. He is very talkative
always friendly (never meets a stranger). He loves
playing with other children and for the most part
is very happy. He tries to do everything himself
and does not appear to be afraid of anything. He
is very very loving and always worries about me
(his mom) and his family. Kenny's learning ability
is always growing and surprises me constantly and
he loves singing songs. His favorite is Going out
with his Boots on, and he is always singing parts
to some song that he likes or makes it into what
he wants it to say.Music is his outlet and when he
gets frustrated music helps him. He is normal for
the most part and he is my blessing in disguise.

My son Jess loves music and is happiest when he is
controlling the CD player like a DJ and singing or
dancing along to songs. When he was learning to
speak, he was only able to say a portion of each
word. But music was one of the first he felt he
needed to say. We speak mostly Spanish at home
so I can still remember Jess excitedly saying "Ca"
for "mus-i-ca.".

Jess also has a fantastic memory. He loves to play
a memory game with his huge box of sports cards.
We cover up the players name and he tells us who it
is. He has hundreds of cards (baseball, football,
soccer and some basketball) and he is rarely ever
wrong. Actually, we can cover up a major portion of
the picture on the card and he still knows who it is...

Jess has always liked books. He enjoys going to the
library and is always ready to sit down and read with
someone. Even by himself, he reads aloud (he doesn't
know how to read silently) or copies the text into
his computer.

He loves to be with people. And although he still
hasn't developed a social form of conversation (he
mostly asks questions or keeps repeating something
that is important to him), he loves to talk.

Noah's strengths:

He can be a very loving boy who tells his Mommy he
loves her many times a day. He is concerned about
his family and their well being. He is already
showing signs of concern for his sister who is 7 wks
pregnant, and taking care of the baby. He has always
been very active, and his gross motor has been at or
above age appropriate. He loves sports, especially
basketball. He can even finger roll . He road his bike
a total of 6 miles yesterday with his Dad. Which I was
amazed by, I did not know if he could do it. He loves
to swing on our swing set, and swim in our pool.
Although he may have his limitations, I expect greatness
from him just as I do my other 3 kids. Greatness being
whatever they chose to do in life. To do it well and be
happy with themselves and their life.

I've been thinking on this and I have come up
with a list of Logans strengths. (4 1/2 years old)

-He can mimic silly voices really well
-Logan can get the TV and DVD player going by himself
(I'm still teaching my parents, haha)
-He can throw an object with speed and precision
95% of the time
-He is willing to try anything at least once
-Logan gives the best hugs and has such a sweet smile
-Logan is very empathetic towards others

Thank you all for sharing your childs strengths,
this was a good idea!


I look forward to hearing more about all of the things
that each one of your kids CAN do and I welcome your
input to be added here if you would like to share.

You can click on "comments" and give your input or
you can e-mail me directly: hope@aracnet.com and I
will gladly include what you have to share about your
child's strengths to the top of this page.

What are YOUR child's strengths?

Believe...

When you have a baby or child who has
Agenesis of the Corpus Callosum you want
to know what to expect and how or if it
will affect them. Unfortunately, because
ACC has such a broad range of effects,
there is no way to tell for certain or to
predict what you can expect for your child.

Not knowing what to expect can be one of the
most difficult things to deal with emotionally
and can also be overwhelming at times...
especially if your child is making progress
very slowly and is slow to meet their milestones.

I can raise my hand high and personally
attest to this because my own child, Matthew,
who has Agenesis of the Corpus Callosum, is
developmentally delayed and he took a long
time to learn new things and to meet
milestones.

One of the sections of information that was
included in the ACC Reading and Comprehension
document dealt with this very subject in
quite an inspirational way. I think it's worth
repeating as a separate post because I believe
that the information that other parents share,
who have a child with ACC, is heartfelt and
encouraging and I hope that you will too.

UNIQUE WAYS OF LEARNING - Amazing
Examples:

When you think that a child with ACC isn't
learning...think again. They very well could
be taking in all kinds of information with
little to no progress showing outwardly.
Then one day it just appears out of the blue
much to everyone's surprise...even the child's
parents.

First parent writes:

"As a baby Abbie didn't babble. She was a very
serious baby. At about age 2 she went from
virtually no speech, apart from a few single
words and their varied mutations, to almost
full sentences. She'd obviously been listening
and observing."

Second parent writes:

"Lexie never babbled either. No mamamama or
bababababa. Also, she never said uh-oh like
all other babies. Same goes with what does a
cow say...."mooooo" Nope! She, too, was a very
serious baby. At age 2 she had virtually NO words.
Then suddenly, somewhere after 2, she began talking.
I would not say full sentences over night, but to
us it was drastic!"

Third parent writes:

"Ryan started speech therapy at 15 months old.
For three long months, once a week, his therapist
would go over the signs 'more, all done, open'
and maybe 3 or 4 other ones. He couldn't care
less! He never seemed to be looking at our
hands (of course I kept trying to teach him)...
he had lots of fun playing with her, but didn't
pick up on the sign thing AT ALL!

At 18 months we were on vacation in Ireland,
when his daddy realized he forgot the video
camera in the car. So he went to get it.
While he was gone, I was tickling and picking
up Ryan for about five minutes. Then I stopped.
Then we looked at each other and he signed "more".
I screamed 'what'? And he did it over and over
and over again. Just in time for the video camera!
By the end of our two week vacation, he was signing
more, all done and open. The amazing part is that
it really seemed like he never paid attn to the
therapist and to me for the three months we tried
to teach him those signs!

Luckily he got kicked out of speech therapy at
three yrs old when he said his first 10 word
sentence. Speech has never been an issue again."

Fourth parent writes:

"My child was not dry by herself at school until
first grade, and even then had some accidents. I
know some schools are icky about wearing Pullups.
She was in Pullups until she was about 11.
She also was not dry at night until 13.

And she started learning to drive at 15.5, but only
got good enough to pass the tests after years of
practice, both written and behind the wheel, at 20,
a fairly long learning curve.

She got her permit at 15.5, then took drivers' ed,
which was very hard. She took the written tests
for the class over and over again until she passed,
but her driving was very nervous, and her drivers'
ed instructor never passed her on it. She drove
with us quite a lot, but not with much confidence.
It helped when we got a smaller car, as she feels
more confident in that one than the minivan
or--heaven forbid--the pickup. But her class for
students with disabilities at the community college
did a lot of work on preparing for the written
(actually computer) part of the driving test.
They worked on it one whole quarter. They also
used the practice tests a lot of states have online.
I'm pretty sure that intense practice in that class
is what gave her the knowledge to finally pass it,
on her second attempt. She took the actual tests
for her license when she was 20, and passed both
the written (computer) and driving parts of the
test, each on her second try. Until she actually
did it, I never thought she would be able to.
We were in denial that it would ever be possible
right up until she actually had it in her hand.

Now she has wheels! She drives the 30 miles each
way to school almost every day. No sweat!"

I shared a story about my own child, Matthew,
with another parent recently:

"I had worked with him for one whole year trying
to teach him how to say the word "bye bye". We flew
to Hawaii and were waiting for our connecting flight
to Maui. My husband went outside for something and
out of the clear blue tropical sky I heard Matthew
say "buh bye" and I nearly did a little dance...the
kind of I can't believe he just SAID it dance. My
husband was gone and couldn't hear this wonderful
new first word that our SEVEN year old child just
said. I grabbed my cell phone and called my mom
(as Matthew was still saying "buh bye"..."buh bye")
and I got her answering machine. I put the phone
up to Matthew's mouth and he SAID "buh bye" a few
times. My mom heard it later and kept it on her
answering machine for years.

While Matthew is still non-verbal with only a
handful of words...I continue to help him with
speech because he makes a lot of sounds and is
trying hard to put simple words together even
though he doesn't know he's doing it. I hear him
sometimes out of the blue say a word while he is
watching TV. For example, he saw a baby on TV and
said "bay-bee" clear as day without any problem.
I will never give up on him talking and will
continue to work with him and believe in all of
the things that he is capable of doing no matter
how old he is or what anyone else thinks."

Fifth parent writes:

"Parker started reading in kindergarten, much
to our surprise. Nobody even knew he could
until his special-ed class had returned from
a field trip to a pumpkin farm. They were
sitting in circle time reading the kids names
that were written on the bottom of the pumpkins.
Well Parker started reading all the kids names,
mind you he didn’t really start talking until
age 5. The teachers were shocked and so they
went and got some flash cards to see if he was
reading or had just memorized the names. We
found out he had about 75 words, some of them
very odd like goat. I don’t even know where
he had ever seen that word. He didn’t like
me reading to him when he was little, but he
LOVED the close captioning on the TV. I guess
that’s where he learned it all!"

Newspaper Article: Finding 'the keys to Matthew'

In 1998 a newspaper article was written by
Meredith Goad titled: Finding 'the keys to Matthew'
The article is based on an interview with Gary and
Kathy Schilmoeller and their son, Matthew, who has ACC.
He was 22 years old at the time of the interview.

Finding 'the Keys to Matthew'

The interview reveals surprising and interesting
information about Matthew and his abilities and also
explains how ACC affects him.

Recently I shared my thoughts with another
parent:

"I have come to realize that even in those
--what seems to be little or no progress times--they
are working hard and learning in their own way,
making connections and the results of all that
'silent' learning appear one day out of the blue
after what seemed like the longest dry spell.
Finally, a rainbow!"

Never Underestimate What a Child With ACC is
Capable of Learning:



Always keep the door open to what a child with ACC
can do and learn. I speak from my own experience
as the mom of a child who has ACC. He beat the
textbook odds and took his first steps at the age
of 7 years among many other things. He continues
to amaze me all the time. I am not alone in this
revelation.

Parent of child with ACC
[who read a book at age 10 for the first time]
writes:

"I cried the first time Noah read for an hour by
himself. It sounded terrible to the normal mom
(he was very choppy), but to me it was beautiful."

This same parent also wrote:

"Now [at 11 years old] he is at a 3rd grade level
in 5th grade. He is still not very fluent. I
was told he may never read by his last teacher."

Parent of 16 year old child with ACC writes:

"My son William had a list of things (an entire
page long) we were told he "would never do." REALLY?
He was 3 years old when we received this list from
our "doctor". At 3, he spoke 5 words that were
understandable (mama, dada, jojo, baba, & more).
His speech was defined as "largely unintelligible
sentences" for *MANY* years. Meaning, we were
the only ones who truly understood him....that
was from age *3* to age ?? (sorry I lost track...
but it was a LONG time).

Well, let me tell you what a difference 13 years
of advocating for speech services can make...I
CANNOT keep him quiet now...he pretty much NEVER
shuts up (and I say that with TOTAL LOVE in my heart)
and he is *completely* *understandable*. He talks
"a mile a minute!" There is NO misunderstanding
him now!! He is even described by his teachers as
very polite and social. He has no problems with
his socialization skills.

Oh yeah one more thing, about that list we received
when William was 3 years old...I'm elated to say,
he does everything on that list and much more, with
ONE exception....he still cannot read, but he will
(I have Faith)...and as GOD is my witness, if it is
the *VERY* last thing we teach him...HE WILL READ."

What do you think? Please go ahead and add your
own comments.

Advocate Dance

When my baby was four months old
ACC is what I was told.

I was in a state of trance
but very quickly took a stance.

Medical insurance would not pay
for any therapy in any way.

I put on my advocate pants
and I did the Advocate Dance!

Whatever it took I would do
and they would pay, that I knew.

They may have denied his medical care
for absurd reasons that flew through the air.

But I didn't give them a second glance
I kept right on doing the advocate dance.

Physical therapy for my baby began
despite denial by our medical plan.

Letters exchanged and phone calls made
I wouldn't settle until they paid.

Out of pocket we did pay
until that final victory day.

And once upon an advocate time
the insurance paid back every dime.

© Sandie L. Davis 6-2-2010


That is a true story and it really happened
to us when my child, Matthew, who has agenesis
of the corpus callosum, was a baby.

There were many other bumps in the road and
closed doors over the years with medical insurance
and other areas.

However, when you are dealing with matters of
the heart and it concerns your child and
his/her best interest, you find the drive and
determination within you to steamroll those
bumpy places smooth and roll right through the
closed door denials.

Don't ever give up.

You are your child's very best advocate in
the whole world.

Finding the Answer....

Last summer I was standing at my sliding glass
door looking out into my backyard when I spotted
a lemon yellow, very out of the ordinary bird
at the top of my plum tree.

I stood in awe gazing from inside my house at the
beautiful birds (there was actually a pair of them).

I was torn to run and get my camera yet did not
want to miss one second of seeing them with my
eyes.

Do I run?

What if I run to get the camera and the birds
fly off?

Gazing at the birds sitting on branches in the
plum tree, primping...then moving to other
branches was amazing.

And I was alone with nobody to tell or say...

'Hey look at those YELLOW birds in the plum tree.

'Have you ever seen a bird like it?'

Ohhhh, I needed a picture.

So off I RAN to the other room to grab my camera
out of the drawer...............

running back to my perch at the sliding glass door.

Ahhh, there they were.

Two yellow birds complete with red heads and
black wings.

STILL IN MY PLUM TREE.

I had time to snap about three quick pictures
through the glass door (not daring to open the
door lest I scare the birds off).

Then like butterflies in flight...the pair of
lemon beauties floated off through the sky out
of my sight.

I wondered for days what kind of birds they were.

I was on a mission.

I searched the internet.

I talked about the birds and told my family all
about them.

Unfortunately, I could not figure out what kind
of birds they were.

Eventually I stopped trying and no longer thought
about it.

That was a year ago.

Last week my sister came over for a visit and she
gave me a surprise gift certificate to a favorite
store of ours.

I was really looking forward to using the gift
certificate and wondered what I could buy with it.

So later that night I went online and looked
up the store.

The store website came up but before I could
browse through more than a few clicks I saw a
picture of a yellow bird SO SIMILAR to the pair
of birds in my plum tree last year.

The excitement began!!

I just had to explore it more so I clicked on the
picture of the bird. Upon a closer view it looked
nearly the same but it didn't have a red head.

I kept clicking on the other pictures of yellow
birds.....because now that I had gotten so close
I was determined to find out what kind of bird
was in my backyard.

Then there it was!

I found it!!

The lucky lemon yellow beauty appeared before my
eyes and finally

(after one year)

I had an answer:

The bird was a Western Tanager:



Now you may wonder why I am posting this story on
the ACC blog but I assure you there is a message
here.

After having finally found the name of the exquisite,
unusual yellow birds that I was privileged to see in
my own backyard, I realized how similar it is to
finding ways to teach my child, Matthew, who has ACC.

There are times when I have tried and tried to figure
out how to teach Matthew something but no matter
how much I try the answer doesn't come.

But after I put the goal on the backburner and
move on to other things, when I least expect it,
(often months or more later) and much to my surprise
I realize that he learned the very thing that I
had been trying to teach him earlier.

We had simply stumbled upon the teaching method
without even trying while doing other things.

It just appeared as easily as can be and flowed like
a river.

Of course we parents of kids who have Agenesis of
the Corpus Callosum realize that there is a big
variety of scenarios for how to teach our kids the
MANY things that they are working on learning.

I am convinced though that sometimes there are
those times when we simply put it on the backburner,
move on to the next thing and let the natural flow
of life and learning take place.

Encouragement

I do my best
I try so hard
see what I can do
a smiling face
so big
so proud
showing something new

Each and every child
unique in their own way
has bright and shining moments
each and every day

Take the time
to nourish them
their spirit and their soul
speak blessings
and encourage them
for love is the true goal.



© 2010 written by Sandie L. Davis

Music, Motivation & Mentor

A very heartfelt story was shared several months
ago by the mom of, Kevin, a boy who has complete
Agenesis of the Corpus Callosum in the ACC-Listserv
support group I belong to. With her permission
I am posting it here:

"Just wanted to share something with all of you. Kevin
has always been interested in music. He tried playing
in the band when he was in the seventh grade, but after
a semester, his band director took aside and told us
that he was not able to play in the band. He said that
he just didn't have enough coordination to master the
instrument. We had been told by his drs. that
this was probably going to be true when he was diagnosed
at 8 yrs. old. So, we weren't surprised. His twin
brother played the tuba all through high school and
Kevin started being the football trainer and continued
all through high school. Casey, his twin, is not C-ACC
like Kevin.

Casey became interested in playing the guitar when
he was in high school and got pretty good at it by
teaching himself. Kevin wanted his brother to teach
him how to play also. But Casey didn't spend a lot
of time teaching him and got very frustrated. so that
was ended quickly. Now at 22 yrs. old Kevin met a
friend that is in a band who is looking for a guitar
player. He told Kevin that if he wanted to join he
would teach him to play. The first advice he gave him
was to buy a left-handed guitar. He started giving
Kevin lessons once a week. He has been teaching him
for about 3 months now. I heard Kevin playing the
guitar in his room today and he was excellent! He
has surpassed his brother's guitar skills. What a
thrill it was to listen to him play.

Moral of the Story: Never limit what your child
cannot accomplish because a dr. said it wasn't
possible. I am definitely guilty of that. But I am
working on it."

Cherry, mom to Kevin, C-ACC, 22, Casey 22, and David, 26

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..!