Accomplishments & ACC

Three years ago when I started homeschooling my
child, Matthew, who has Agenesis of the Corpus
Callosum, I decided to keep a written documentation
of homeschool progress notes. Each month I make
note of all the days that Matthew learned something
new or accomplished a task or goal...big or small.

Honestly, I am not the most efficient or
steadfast recordkeeper but I can tell you that
when I look back over the past three years of
homeschooling progress notes it makes a world of
difference when your child's progress is staring
you right in the face in writing...one glorious
page of efforts and accomplishments after another.

Matthew is 16 years old, however, developmentally
he is much younger and he is nowhere close to his
actual grade level. In fact, much of Matthew's
progress both developmentally and educationally
(especially when he was really young) seem to move
at the pace of a snail at times and sometimes that
slow pace comes to a screaching halt with a very
long plateau of what seems like no progress or
very little.

But when you actually keep a record of each and
every little thing that you see your child learning
and doing and then are able to refer back to it
over the course of a year, it is amazing to see
all of the very beautiful and wonderful things
that your child learned and can do.

I'm glad that I decided to keep a record of
Matthew's accomplishments.

On those days when you feel like your child is
behind or you get caught up in the 'feel like
they aren't making much progress blues' it is a
blessing and eye opening experience to pull out
that document listing all their progress and remind
yourself of the abundance of learning and goals
that your child accomplished.

As you ring in the New Year take the time to
reflect on all of the fantastic things that
your own child who has ACC learned and can do
and keep your focus on each and every small
accomplishment that they will continue to make
in 2010!!

HAPPY NEW YEAR!!

Agenesis Corpus Callosum & Growth

Recently I responded in an online Agenesis Corpus
Callosum (ACC) e-mail support group to the
following question and thought I would share
it here:

Can Agenesis Corpus Callosum Affect Growth?

I am also the mom of a boy, Matthew, who is adopted.
We adopted him at birth and found out he had ACC
when he was four months old. I think every parent
will agree with you that receiving the diagnosis
of ACC for their baby/child is a shock and moving
through all of the overwhelming emotions, questions,
concerns is not an easy task. I cried A LOT during
the first year after my son was diagnosed and went
through tidal waves of emotions...but it did calm
and become easier.

YES, when a child has ACC they may also have
growth problems and it can affect their growth.
Because ACC can affect growth and cause other
various hormone issues, it is very important that
child be seen by a good pediatric endocrinologist
to rule out any problems.



Some children who have ACC require growth
hormones. My own child, Matthew, began seeing
a pediatric endocrinologist when he was younger
because he was very short and nearly below the
growth chart on his height. His weight was fine
but he could wear the same shirts and pants for
two plus years and always looked about two years
younger than the kids in his class. He had various
blood tests to check all of his hormones and he
also had an x-ray of his wrist/hand to check the
bone age. All of his hormones were fine and his x-ray
showed that his bone age was a little over two
years behind his real age. He was (and still is)
followed every year by his pediatric endocrinologist
for a check-up. Also, when a child has ACC they
may not start into puberty or may start puberty
too early or too late. It was explained to me
that because the pituitary sits very close to
where the corpus callosum should be (in the middle
of the brain) that there is the possibility that
the pituitary may also have a problem and may not
function properly. My son started into puberty
without any medical intervention or need for
hormones and is doing fine. He didn't start
puberty until about age 14 years.

ACC is a midline defect and because the corpus
callosum is in the middle of the brain there
is the possibility that the child can have
other midline defects (such as a cleft lip
and/or palate. Another example is the heart
since it is midline in the body. My son had
a heart murmur and because he has ACC he was
seen by a pediatric cardiologist and had tests
to rule out any heart defects/problems.

ACC can also be seen with other medical problems
such as chromosome anomalies, genetic syndromes,
metabolic disorders and optic nerve or eye
conditions.

When a child has ACC they should be seen by a
pediatric ophthalmologist to rule out any optic
nerve problems and/or eye problems. Sometimes
kids who have ACC have a wandering eye (wanders
out or wanders in) (exotropia or esotropia) and
they can prefer to use one eye to focus instead
of using both eyes together. They are at risk
for having amblyopia (permanent loss of sight)
if they continue to use only one eye to focus
because the brain will shut off vision permanently
to the eye that is not being used. It is my
understanding from our own pediatric
ophthalmologist that the risk of amblyopia is
possible until about the age of eight years old
in a child. They are followed VERY closely by a
pediatric opthalmologist to be sure that the
child is using both eyes to focus and to help
the weaker eye become stronger using various
ways...such as patching the stronger eye to force
the weaker eye to be used. Sometimes a child will
require surgery to the eye muscle. My own son did
require eye surgery (on his right eye only) after
patching was not effective.

Below is a link to a list of medical options to
consider and discuss with your child's doctor(s):

http://scenicbeauty.tripod.com/WhatComesNext.html

Please feel free to e-mail me anytime. I am happy to share anything about my own son, Matthew, and our experiences with ACC.

Sandie *Mom to 16 year old Matthew with complete ACC*

Disclaimer:
The information found on this web site is written based upon my own personal experiences and comes from what I have learned while dealing with my son's ACC. Please seek the advice of a qualified physician for medical advice.

Teaching & Agenesis Corpus Callosum

A teacher is a careful observer of each
student and understands that every child
has their own personality, motivations,
strengths, weaknesses and gifts.

Getting to know each student is an especially
important part of what a good teacher does
in an effort to provide the best possible
instruction for the child to help him learn
to his greatest potential.

When a child has Agenesis of the Corpus
Callosum it can be confusing how to
effectively teach and help the child learn
not only for the child's teacher but for the
child's parents as well.

There is no way to predict how ACC or a corpus
callosum disorder will affect a person diagnosed
because ACC has a very broad range of effects.

There is also no set guidelines for how to teach
a child who has Agenesis of the Corpus Callosum.

Each person can be uniquely affected as a result
of having ACC. What works for one student in terms
of learning and education may not work for another
student with ACC.

It is extremely helpful to have teacher/parents
communication flowing regarding the child with
ACC to gain insight into how their child learns,
their strengths, weaknesses, what motivates the
child, etc. Anything that a parent can put into
writing about their child with ACC with respect
to helping their child learn in the classroom is
very valuable information for that child's teacher(s).



Some things that are mentioned often when a child
has Agenesis of the Corpus Callosum are:

• A child may need A LOT of repetition to learn something.
  
  
• It can sometimes take a child much longer to
  grasp a skill and it seems like all the
  repetition is going nowhere with no progress
  but one day it just clicks and they get it.
  It all comes together for them. They often
  times just really need that repetition to
  make the connection.
  
  
• Sometimes children with ACC take things very
  literally. For example, "Wake up and smell the
  coffee" could be taken very literally by a
  person with ACC.
  
  
• A child with ACC may struggle with social
  skills. A child may have trouble with making
  eye contact, showing empathy, reading and
  comprehending facial gestures.
  
  
• Staying on task and focusing may be difficult
  for children with ACC.
  
  
• Moving a child with ACC, who is not focusing
  well, to the front of the classroom may prove
  to be very beneficial.
  
  
• A child who is having difficulty staying on task
  and focusing may also greatly benefit and
  require a one-on-one aide or a shared aide.
  Some parents have a child in school who has
  an aide in the classroom to help but the other
  kids are not aware that the aide is there for
  that child.
  
  
• Receiving too much information at once may
  be difficult for a child with ACC. They may do
  wonderful with one or possibly two part
  directions but if you give too many
  directions at once they might become
  overwhelmed and not be able to follow
  through with everything being asked of
  them.
  
  
• A child with ACC may require extra time to
  process information and need extra time to
  complete tests.
  
  
• Children with ACC may have trouble with
  abstract reasoning. Keeping information
  presented as concrete as possible can help.
  
  
• Children with ACC may learn more easily if
  what is being taught is broken down into
  smaller tasks.
  
  
• Children with ACC may struggle with reading
  comprehension. They may read very well but
  find it difficult to remember what they
  just read.
  
  
• Giving a child different ways to receive new
  information and new ways to express
  themselves may be exactly what the child
  needs in order to process the information
  better and express their knowledge. For
  example: a child may not do well with
  using a pencil and putting their thoughts
  into written words or they may not use a
  pencil or crayon well to draw a picture
  but if they are given other methods to
  use such as a computer (or whatever else
  is discovered) that child may be able to
  put together perfectly their own picture
  or thoughts or express themselves in a
  manner that is just right for them.
  Finding that way isn't always easy but
  it's always worth a try or two or ten.
  
  
• A child with ACC may have trouble staying
  organized and may struggle to remember
  homework assignments. A homework log
  with all assignments can be helpful.
  
  
• A child with ACC may find it very difficult
  to put their thoughts into words and struggle
  with handwriting and taking notes.
  Handwriting may be very slow for them.
  Allowing a child to use an Alphasmart in
  class or to type their assignments can be
  a tremendous help for a child who has ACC.
  
  
• Children with ACC may have difficulty with
  math. Being able to use a calculator can be
  very helpful for the child who has ACC.
  

More Agenesis Corpus Callosum and Education
information can be found at the links below:

Teaching Resources

ACC Social Skills & Challenges

ACC & Me Children's Book

Considerations For Educators Of Students With ACC:
This document is written by Mr. McCallum and
he is a teacher who taught a child with ACC in
his classroom. He offers detailed and valuable
information. The web page version of this
document is no longer available. If you would
like to receive a copy of “Considerations For
Educators Of Students With ACC” by Mr. McCallum
please E-Mail me. In your e-mail it is helpful
to know if you are a parent or a teacher
requesting the information.

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.

Learn Sign Language

baby signs "eat"

Some kids who have Agenesis of the Corpus
Callosum may be delayed in their speech or
may have very little verbal speech. Sign
Language can be a wonderful way to help give
a child the ability to communicate.

In June of this year I did a post about Sign Language.
My son, Matthew, who has complete ACC is non-
verbal with only a handful of words. His main
form of communication is through the use of an
augmentative communication device called a
DynaVox V and through the use of sign language.

One of the best and easiest ways that we both learn
sign language is by watching sign language DVDs for
kids.

I found Baby See 'n Sign Volumes I and II a few
years ago and we find these DVDs to be helpful
in teaching us many different signs.



Baby See 'N Sign Volume I is divided into seven
categories and contains about 60 signs:

Let's Get Dressed: bath, shirt, hat, shoes
Food: milk, banana, cereal, apple
Chow Time: eat, spoon, juice, cup
Play Time: play, ball, boat, book
Animal Pals: bird, duck, bear, cat
Down on the Farm: cow, horse, chicken, pig
Away We Go: car, walk, airplane, train

Each category in Volume I contains about eight
signs to learn. I have listed only a few of
the signs taught in each category.


Baby See 'n Sign Volume II is divided into seven
categories (plus Bonus Signs) and contains over
100 signs:

Familiar Faces & Places: mom, boy, sister, school
Outdoors: flower, tree, sun, sky, rain
Zoo Friends: monkey, lion, bear, giraffe, elephant
Party Time: balloon, cake, music, candy, candle
My Body: face, hair, teeth, smile, mouth
Bath Time: clean, dirty, bath tub, soap
Nighty-Night: tired, sleep, blanket, night light, pray
Bonus Signs-Manners: please, thank you, sorry, want

note: the sign for "giraffe" in this DVD is not demonstrated the way that we have learned the sign.

Each category in Volume II contains about sixteen
or more signs to learn. I have listed only
a few of the signs taught in each category.

Matthew likes Volume II the best. He will sometimes
watch this DVD without me and while I was watching
the DVD to write down some of the signs, so I
could share them here, I discovered that Matthew
knows more signs that I wasn't aware he knew. He
really surprised me by making the signs right along
with the words "star" and "towel" and a few others.
I had no idea he even knew how to make those signs.

The signs are taught through the use of displaying
real life objects up close on the full screen. They
show babies, toddlers and small kids throughout
much of the videos. The sign is demonstrated by an
adult, Johanna Larson-Muhr, who is a American Sign
Language instructor.

Each word is shown a total of three times by
showing a full screen picture (that is different
each time) representing the word.

The written word is always shown with the picture
and the word is verbally spoken.

After each picture is shown you will then see the
American Sign Language instructor appear on the
screen to demonstrate the word.

Each word is shown a total of three times with
3 different pictures, the word is spoken each time
and demonstrated using sign language three times.

There is a lot of repetition involved in this
video. Repetition is a key ingredient that many kids
who have ACC require.

Baby See 'n Sign is available in both DVD
and VHS format.

More information can be found at:
Baby See 'n Sign website



this video clip does not come close to representing
the quality of the DVDs and what they offer, in my
opinion. The DVD movie does not move across the screen
the way this video clip shows and is not blurry. The
DVD has excellent picture quality.

Order Baby See 'n Sign
They are offering free shipping.

Back To School

Personally, the end of summer and coming to
terms with the fact that the sensational
sunshine (that I wait months and MONTHS to
see here in Oregon) and all the delights the
summer season brings is nearly over is not
an easy task for me. I am one to squeeze
every last ounce of fun and sun out of
summer right down to the very last drop
and then I shake that last little bit of
summer out just to be sure it's completely
gone. It's not an easy transition for me.
Speaking of transitions...It's:



Some of your kids have already headed back
to school. Some of you are just about to
send your kids back to school and for some
of you, it will be your child's very first
day of school and a brand new experience for
your child and you.

When you have a child who has Agenesis of
the Corpus Callosum there can be numerous
decisions and choices to make concerning
your child and School. On top of that,
there are also many concerns that we,
as parents of kids who have ACC, wrestle
with in our minds with respect to how
our kids will handle while they're in
School.

Below are some links to information about
Agenesis of the Corpus Callosum and school
that have been posted here before but may
be helpful to view again since this is the
Back to School season:

ACC & Your Child At School-Part 1

ACC & Your Child At School-Part 2

The ABC's of ACC
If you would like a copy of this document please E-Mail me.

ACC-Social Skills & Challenges
If you would like a copy of this document please E-Mail me.

ACC & Me Children's Book

Educational Suggestions For Children With ACC:
A Beginning

Considerations For Educators Of Students With ACC:
This document is written by Mr. McCallum and
he is a teacher who taught a child with ACC in
his classroom. He offers detailed and valuable
information. The web page version of this
document is no longer available. If you would
like to receive a copy of “Considerations For
Educators Of Students With ACC” by Mr. McCallum
please E-Mail me. In your e-mail it is helpful
to know if you are a parent or a teacher
requesting the information.

And now it's my turn to get my own child,
Matthew, who has complete Agenesis of the
Corpus Callosum, ready for school and get
back into the swing of school and learning.

I hope that each one of your kids will
have a very positive and fun-filled school
year. :)

I have some very fond "My Favorite Matthew
School Memories" and thought I would end
with one of them:

I opened his backpack one day after school
and found a little handwritten note addressed
to Matthew from a little girl in his very
early grade school mainstream class...

"Dear matthew

You are a smart, charming kind. You make
me have fun at resses because you play with
me. You make me so happy to have you as a
friend. You have a rilly best frind right
with you avery were you go. gas what thats
me Brenna"

from sweet Brenna"