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"

Meet Lynnea - An Adult with ACC

"I’m Lynnea (said like renae but with an L)
I’m 23 years old, and I have C-ACC. I grew
up in a Christian home. My father worked
with special needs adults, and my mother
taught special needs children. From a
young age my parents new I was different.
But weren’t sure how. I wouldn’t crawl
forwards for the longest time (only backwards)
It took me a long time to walk (I was almost
15 months old) and even then my right foot
would turn almost completely in. I couldn’t
ride a bike (still cant) and it took me
forever to learn to tie my shoes. When my
parents tried to get me tested for special
needs the school system refused. But my
parents and I went on, they started teaching
me how to walk without turning my foot in,
and I even learned to tie my shoes. I always
got hurt when learning to ride a bike so I
stopped doing that.

Throughout my schooling I wasnt the best
student. By 2nd grade my teachers were already
saying I was falling behind. Part of this was
because I was getting bullied at my old school
so my mom took me out of the school and put me
in a new one. And that school was ahead in what
they were teaching kids my age. By the end of
3rd grade the school system wanted to hold me
back. My parents disagreed with the school
system so they didnt hold me back. But mom
begged them to test me for a learning
disability and that is when they refused to.
Instead they decided to put me into a gifted
program because they thought maybe I wasnt
being challenged enough. The gifted program
basically was to help me learn study techniques
and in my opinion really helped me in my
schooling. Though I really struggled with math,
I loved science and english. I was getting
by in school with a's b's and c's.

By the time I was in high school I started
getting b's, c's, and d's though I was in
band and choir and got a's in both of those.
After my father died (you'll read more about
that below) I was put on homeschooling for a
year and a half. Because of the one on one
attention I was getting I did much better.

Then my senior year I finished school with a
better chance of getting into college. I
touch on this more later but college is still
a challenge. I love it, but I've got to stay
focused on my studies, and I still get special
tutoring when taking math, and even science
and english. With the one on one attention
that professors and tutors give me and the
patience I've received and my own determination
thats what's helped me all through my school,
before and after I found out about my ACC.

The best thing for me was the patience that
some of those that have worked with me showed
me. When someone gets annoyed with the fact
that I'm not getting something, I get
frustrated with myself and then nothing gets
accomplished. So concerning my education,
thats what I've learned about myself and
my ACC.

My childhood was a good one. I was a
generally happy child that lived by the
“never give up” motto, when it didn’t
include bike riding. And then at 8 years
old I became a Christian. This was also
around the time that my dad got very sick.
By the time I was 14 my dad had 5 knee
surgeries (2 on one, 3 on the other) and
was diagnosed diabetic. 2 months after my
15th birthday my father was diagnosed with
Leukemia. 3 months later my mother broke
her arm in half. I was my parent’s only
child, so at 15 it was up to me to take
care of both of my parents, and the house
chores. I was basically my father’s home
nurse. It was a great experience though
tough because I learned how to take care
of others and myself. Then in Sept of 2001
my father died.

During the next 3 years I became very
depressed and started showing more signs
of “being different” the depression brought
out the worst in me. Then when I was 18 I
graduated high school (after being homeschooled
for a year) Finally I was out of school, and
I wanted the experience of living away from
home. I got my license at 18, and had a wreck.
Then I moved in with my brother and got another
car. A year later I wrecked that car. Then I
started college at a Christian University.

My mother was getting more and more concerned
with the fact that I was showing more signs
of being clumsy. So she took me to a neurologist.
He had me get an MRI and that’s when I found
out I had ACC. I was 20.

Once again I entered a deep depression. Life
was tough. But I decided right then, that if
I didn’t find out til I was 20 I could hide it.
For about 6 months I did. No one thought any
different of me. Then after about a year I
started telling people. My life started making
more sense. But people started being mean.

After I started speaking out about my ACC
people accused me of wanting attention and
even of lying, they made fun of me when I
had one of my “ACC moments.” Even at a
Christian university I was getting mistreated.
My school didn’t understand, and I wasn’t
getting the accommodations I needed. No one
realized that the deeper I get in school the
harder it is. But I decided to press on. For
every person that made fun of me, there were
5 that accepted me. For every professor that
didn’t accommodate me there was 1 that did.
I saw a light at the end of the tunnel, and
kept on going.

Now my goals are to finish college. I’m a
youth ministry major, and it’s something that
I love to do. My grades are pretty good,
though I have to try harder than a lot of
others, I’ve learned to stay determined.
I’ve got one more year of college, and then
I’ll be a college graduate and that will be
great. After college I want to start my
ministry of teaching kids about Jesus. But
even more than that, I want to reach both
adults and kids with ACC. I want to reach
school systems, the medical field, and people
all over the world telling them about this
rare brain disorder. I want to be someone
that can be a bridge between the gap of
people with a Corpus Callosum and those
without. To spread the word about this disorder
that many don’t know about. I want to help
with the knowledge of the disorder, and help
others understand that everyone is different.

College has been great for me, it helped to
shape me into who I am and gave me an
independence I never thought was possible.
I still don’t drive, but there are other ways
to get around, and I’ve got great friends.
College has helped me with ways to cope with
this life as an ACCer. No matter what the
negatives in life there are always positives.
There is always a chance to smile in the midst
of a storm.



My involvement with ACCA is this: About a
year ago I started thinking about the fact
that I have a voice, I have a chance to
speak out about ACC and help others learn
about it. I have a chance to be someone that
ACCers can look up to. And so I started ACCA
(ACC Awareness) and it’s been one of the best
things that’s happened in my life. I have met
wonderful parents, as well as wonderful kids
and adults with ACC. I’ve made friends that
understand me on a level that I never thought
possible. I’ve been able to tell people about
ACC that have never heard of it. And they’ve
been able to tell others that have never heard
of it. It’s been a blessing in my life, and now
we’re working on getting media attention as well
as making videos full of ACCers both children
and adults.

Always remember, In God's eyes we are all special
-Lynnea"



Please read and sign the
Petition to Help Generate Media Attention for ACC


Contact Lynnea by E-Mail or through her

Saynow number: (740)205-6957

More Information about Lynnea and ACCA:

Agenesis of the Corpus Callosum Awareness Website

Letting People Know About ACC...Blog

ACCA on MySpace

ACCA on Twitter

You can view more videos by Lynnea on YouTube

I am so thankful to have the pleasure of
meeting Lynnea through our e-mails. She has
such a positive spirit, a bubbly personality
and, as you can see, a HUGE passion for
creating awareness about Agenesis of the
Corpus Callosum (ACC). I give thanks to
Lynnea for being so open and willing to share
her personal story. :)

If you are an adult with ACC or a corpus callosum
disorder and you would like to tell your story
here please E-Mail me.

Note: C-ACC stands for complete ACC-meaning the corpus callosum is completely missing.

ACC & Your Child At School-Part 2

This post is a continuation of a previous post
last week entitled:
ACC & Your Child At School-Part 1

please note that this information is based on
education in the United States.

Whether you are just sending your child
who has Agenesis of the Corpus Callosum or
a corpus callosum disorder off to school
for the first time or you already have a
child in school there are often times a
lot of decisions to make on behalf of your
child when it comes to their education.

Choosing what is best for your child who
has ACC with respect to their education
is not easy but it doesn’t have to be all
that difficult either.

Chances are that you, as a parent, already
have a good idea of what you want for your
child regarding their education and what
type of school/classroom/educational setting
can provide that.

If you are still unsure, definitely explore
the options. Call or visit your school, your
local Education Service District, private
schools and talk with other parents. There is
also the option to homeschool your child.

Some of you may enroll your child in school
and they will have what is called an Individual
Education Plan (IEP). The IEP provides for, in
writing, specific goals and needs for your child
concerning his or her education.

For my own child, Matthew, who has complete
Agenesis of the Corpus Callosum, I chose to
enroll him in public school in an (ESD) Education
Service District special education classroom
(with an IEP) but I did not want Matthew to
spend the entire day isolated within that
special education classroom. I knew, for Matthew,
it was best for him to have mainstreaming for
50% of his day to offer him the opportunity to
be around typically developing children for
social skills, language, etc. Matthew also
required a one-on-one assistant in order to
be successful in mainstreaming.

Was it easy to get my own child, Matthew,
placed in the best educational setting for him?
Not at all. It didn't happen without a lot of
work, persistence and standing up for Matthew's
needs. But, it DID happen and was well worth
it because Matthew thrived and made wonderful
progress with his particular school placement.

Then there's the decision to make:
will your child ride the bus to school?



Wrightslaw is a website that provides information
about special education law, education law and
advocacy for children with disabilities. It
includes the IDEA (Individuals with Disabilities
Education Act) and information about Section 504
as well as a multitude of additional valuable
information.

Other Educational Information: (two are pdf files)

Educational Suggestions For Children With ACC

Neuropsychological Assessment

"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.

ACC & Your Child At School-Part 1

A Guide to the Individualized Education Program (IEP)

Be sure to consider getting a copy of the
ACC and Me book if you don't already
have it. It could be a wonderful teaching
tool in your child's classroom.


Important things to keep in mind:

1. YOU are part of the IEP team and YOU
know your child best.

2. Be prepared – Make a list of what your
child needs.

3. Be a strong advocate for your child because
YOU are your child’s best advocate.

4. Visit different classrooms so you can choose
the best placement for your child.

5. Take someone with you to the IEP meetings.

6. Read, Review and double-check the IEP
when you receive it. Is everything
in writing on the IEP that you asked
for that was agreed on?

7. Re-visit the classroom when your child is
placed. Be sure it is meeting your child’s
needs and that you are comfortable with the
placement option. Visit several times.

8. You can request another IEP meeting anytime.
Your child's school placement and IEP can
be changed whenever needed.

9. Listen to your inner voice.

10. Stay Involved.

In conclusion, I found this:

created by a mom who wanted to show her child
in a positive light to the IEP Team and put
a face to her child's name and diagnosis.


Remember why you are all there for this
meeting in the first place…to help a child
learn to the best of his or her abilities in
the best possible educational environment.

Please feel free to comment and give your own
input and insight regarding your child and school.
Or, if you have any questions please feel free to
E-Mail me.

ACC & Your Child At School-Part 1

ACC & Your Child At School-Part 1

Sending your child off to school for the first
time is not an easy thing to do. I think any
parent will tell you that.

When you have a child who has Agenesis
of the Corpus Callosum or a corpus callosum
disorder, sending that child off to school
for the first time becomes much more difficult
not only in terms of letting them go (through
tears sometimes) but also in terms of making
the best decision and choice about what kind
of classroom will best suit your child’s
educational needs.

It can be challenging!



Should they be placed in a mainstream class?

Should they attend a special education classroom?

Should they be in mainstream and be pulled out
to receive resource room help?

Should they be placed in special education and be
mainstreamed?

Do they need to be mainstreamed with a one-on-
one aide?

And the list goes on and on…



There are so many choices to make.

Even if you have a child with ACC or a
corpus callosum disorder who is already in
school, it can still be a challenge and
confusing sometimes when deciding what
the best option will be for your child
in the upcoming school year.

I will write more about this topic and share some of
my own thoughts and experience pertaining to
school and my child, Matthew, next week.

One very helpful thing you can do to help
inform and educate your child’s teacher
(and many of you may already do this) is
to create a small packet of information
about ACC and provide your child’s teacher
with clear and concise information pertaining
to your child’s strengths, motivation,
struggles, behavior issues (if applicable),
medical issues, etc. Include informative
information, tips and hints that you
believe will help the teacher better understand
and relate to your child in an effort to create
a very positive educational experience for all.

Try to be as brief as possible, while still
giving pertinent information, and definitely
highlight the very important things so that
they will easily stand out for your child’s
teacher.

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.

Just thought all of you parents would like to
know that there have been many teachers over
the years who have e-mailed to request the ACC
document by Mr. McCallum because they have a
child with ACC in their class. I think that is
wonderful and it always makes me smile. :)


ACC & Your Child At School-Part 2