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.

Neuropsychological Evaluation

The topic of a Neuropsychological Evaluation is one
that comes up often in the ACC support group I
belong to.

The topic came up during the creation of the ACC
Reading and Comprehension document and although
the Neuropsychological Evaluation information was
included in that document, I believe it is worthy
to stand alone as a separate blog post in an effort
to view it more easily and in the hopes that it will
spark additional input and information from others.

The information gained from a Neuropsychological
Evaluation is valuable in terms of helping a child
who has Agenesis of the Corpus Callosum in the
educational setting.

In their article titled: Neuropsychological Assessment:
An Important Tool for Managing ACC",
Lynn K. Paul, Ph.D., and Warren S. Brown, Ph.D., say:

"Despite the similarities, each individual
with ACC has unique characteristics. The goal
of neuropsychological evaluation is to clarify
the particular pattern of strengths and
weaknesses present in the case at hand and
then to target specific abilities for intervention."

"(The length of evaluations vary.) A comprehensive
evaluation includes testing attention, memory,
sensory-motor skills, visual perception, language,
intellect, reasoning, social behavior, personality,
and emotions. It is particularly important in ACC
to assess pragmatic language, problem-solving
skills, and social communication."

Parent of child with partial ACC said:

"People are not always aware that some traditional
tests of reading comprehension sometimes do not show
how serious a problem can be. (You will not have that
problem with a neuropsychologist, I'm sure.) In the
public schools the testing for us always came out
pretty good, but was obviously (to me, not them) not
accurate. With the neuropsych we were able to get a
much better evaluation as well as a specific diagnosis
of LD for reading comprehension, in addition to
the OHI."

OHI = Other Health Impairment
LD = Learning Disability

NEUROPSYCHOLOGICAL EVALUATIONS:

Many parents who have a child with ACC highly
recommend having a Neuropsychological Evaluation.

The Evaluation can be costly, however, parents
report that the information gained from having
a Neuropsychological Evaluation for their child
is invaluable and worth the cost.

A Neuropsychological Evaluation can accurately
assess a child in the area of reading and
comprehension, diagnose problems, provide specific,
detailed information and suggest intervention
methods.

In addition, a Neuropsychological Evaluation will
also thoroughly assess the child and give insight
and intervention methods in all educational areas,
cognitive as well as behavioral.

In her document titled "Educational
Suggestions For Children With ACC: A Beginning",
Kathryn Schilmoeller, Ph.D. and parent to grown son
with ACC wrote:

"If I were in a position of advocating for Matt
in the public schools at this point, I would urge
the school to have a neuropsychological evaluation
done. We found such an evaluation to be invaluable
in terms of giving us some concrete suggestions
for the teachers working with Matt. My only regret
is that it took us until Matt was 15 to figure out
that that would be helpful. In our case, after the
testing was completed, Gary and I first had a
session with the neuropsychologist to go over the
results and ask questions. Then we had the
neuropsychologist attend a PET (pupil evaluation team)
meeting to go over the results. We video-taped this
session so that the video would be available for
his current teachers to review and new members of
Matt's team to view as they started working with
him. The school paid for all of this as part of
his triennial review."

Is there a particular age that is best for a child
to have a Neuropsychological Evaluation?

Second Parent of a child with ACC writes:

"I have heard mixed opinions on when a neuropsych
eval is worthwhile. My neuropsych said really
earlier than about 8 or 9 is just too soon, but
others have said as early as 4. Also, for my
child we are on a 2-3 yr plan. Lets set up 3yr
goals and then re-evaluate. Maybe right before
high school. Then again right before graduation.
He stressed, for my child, not to set goals too
long range. We do not know what the future holds
so let's not try to set our sights on college,
let's look at middle school and jump off the High
School bridge first then the college bridge.
It made it all look so much less daunting!"

Third Parent of a child with ACC writes:

"My son had a private neuropsych eval when he was
about 6 1/2 years old and in first grade. We
arranged this ourselves and finally convinced the
insurance to pay for it (after countless phone
calls and help from the doctor's billing office).
Having him evaluated was one of the best things
we've done on this ACC journey. The eval gave us
additional insight into my son's learning style
and needs. It also gave us a "professional's"
opinion that we could take to the school to
convince them that we did indeed know what we
were talking about. We found it very helpful as
we were crafting his initial IEP, halfway through
first grade. I pull out the page of recommendations
every time we have a meeting with the teacher or
the school."

Fourth Parent of a grown child with ACC shares
her viewpoint of a Neuropsychological Evaluation:

"We found that her neuropsychological
evaluation was extremely helpful. In her case,
it did pinpoint her reading difficulties (for
the first time), giving her a diagnosis of
"learning disabled for reading comprehension"
to go along with her OHI diagnosis provided by
the MRI. But that was just a small part of the
findings. The report also included all the
pertinent results of all other testing she had
had done over the years, as well as input from
teachers and from us.

She had been tested twice at school, and she also
had a private evaluation. They all found that her
academic levels were all at or above grade/age level.
Her IQ scores were quite variable, from high average
to borderline mental retardation. They didn't evaluate
anything else. None of those findings were helpful
at all. Her problems were attributed to "temperament"
or "anxiety," both of which were ludicrous to anyone
who knew her at all.

The neuropsych testing included similar intelligence
and academic testing, but other kinds as well. It
was far more detailed and accurate, assessing and
discovering learning deficits and problems that the
public school and previous private evaluations had
not. And the IQ results were far more reasonable,
in the low average range. She was also found to have
significant deficits in problem-solving and
higher-order thinking skills and "executive
functioning"--frontal lobe--skills.

She was evaluated within the year after her initial
ACC diagnosis, at age 17. I have heard that about
age 7 is the lower end of the age range for this
kind of assessment, and I think that would have
been the perfect age for her. This is when her
problems really began showing up, and when we started
looking for answers. I think that if we'd have had
it done that early, we would surely have wanted
another one when she reached 7th grade or at least
by high school, to track progress, to see if there
were any other findings that would become apparent
by that age, and to address recommendations for the
type of learning required for secondary success.
Of course this is all just speculation on my part.

The report outlined ways she could learn best and
gave recommendations for teachers."

This same parent goes on to tell additional
ways that having a Neuropsychological Evaluation
benefited her daughter:

"Even though we got this report so late in her
school career, I'm very glad that we had it done.
We used it to help her qualify for SSI benefits,
and were told by the person managing the case
that the evaluators were extremely impressed by
its thoroughness, which was far beyond anything
they'd have had done. She would never have
qualified on the first application without it,
and I doubt she'd have qualified even on appeal
if not for the information it contains. It was
also just what she needed to qualify for
accommodations and help from the college. So
for those two post-high school uses, she got it
just in time."

To give an example of some very specific information
contained in a Neuropsychological Evaluation for one
particular child who has ACC, I am including pertinent
sections of that child's Evaluation and findings.

The Psychologist wrote:

"My evaluation consisted of an initial interview
with Jamie's parents, (names parents), a review of
school and medical records provided by (names parents),
standardized behavior rating scales completed by
Jamie's parent and several teachers, and a selected
battery of tests with Jamie. Following the evaluation,
I had the opportunity to discuss my findings at length
with (names parents) during a feedback conference."

The specific tests used in the Evaluation were:

Wechsler Intelligence Scale For Children-Fourth Edition:

Full-Scale IQ
General Ability Index
Verbal Comprehension Index
Perceptual Reasoning Index
Working Memory Index
Processing Speed Index
Subtests Block Design
Similarities
Digit Span
Picture Concepts
Coding
Vocabulary
Letter-Number Sequencing
Matrix Reasoning
Comprehension
Symbol Search
Information

Woodcock-Johnson Pyschoeducational Battery-Third Edition
Test of Achievement:

Broad Reading
Brief Reading
Basic Reading Skills
Letter-Word Identification
Reading Fluency
Passage Comprehension
Word Attack
Broad Math
Brief Math
Math Calculation Skills
Calculation
Math Fluency
Applied Problems
Brief Writing
Spelling
Writing Samples
Academic Skills
Academic Applications

Gray Oral Reading Tests-Fourth Edition:

Oral Reading Quotient

Comprehensive Test of Phonological Processing:

Phonological Awareness
Rapid Naming

Additional Tests Administered:


Wisconsin Card Sorting Test

Boston Naming Test
Controlled Oral Word Association Test
Grooved Pegboard
Delis Kaplan Executive Function System
Wide Range Assessment of Memory and Learning-Second Edition
Child Behavior Checklist
Child Behavior Checklist-Teacher Report Form

The Psychologist wrote:

"Jamie's composite performance on the Gray Oral
Reading Tests-Fourth Edition, a functional reading
measure tapping oral reading skill development,
was below average (Oral Reading Quotient = X).
Jamie experienced particular difficulty on
variables from this measure related to fluent
reading, while his reading comprehension composite
fell in the low end of the average range.
Evaluation of memory functions indicated that
Jamie experiences significant difficulty with the
initial acquisition and retention of newly presented
information. His memory weaknesses are in excess of
what would be expected from a child with his level
of cognitive ability, and his weakness with the
acquisition of new information extends to both
verbal and nonverbal memory modalities. Jamie's
composite verbal memory performance from the Wide
Range Assessment of Memory and Learning-Second
Edition which correlates with the declarative
memory demands often placed on a child in the
classroom clustered far below average compared
to others his age (Verbal Memory Index = X).

Jamie is somewhat slower to complete activities,
and he is sometimes slower to organize his response
to specific tasks. Like general language weakness
and memory issues, these issues of performance
efficiency also likely stem from his neurological
conditions including agenesis of the corpus callosum
as well as epileptogenic activity. Given the extent
of Jamie's agenesis of the corpus callosum, cortical
dysplasia, and the additional complicating factor of
epileptic activity in his brain, from a cognitive
perspective it is remarkable that Jamie has developed
as well as he has.

From my perspective, I would strongly encourage
the educational team to consider Jamie's
primary disability as one that is characterized
by Jamie's neurological conditions including agenesis
of the corpus callosum, cerebral dysplasia, and
the presence of epileptic activity in Jamie's brain.
Due to the direct correlation between these
neurological conditions and Jamie's neurocognitive
functioning which forms the basis for Jamie's
educational development, I believe that Jamie can
be appropriately considered as meeting
special-education eligibility criteria under the
handicapping condition of Other Health Impairment
(OHI). Because this is most explanatory of Jamie's
struggles, I believe that the educational team
should consider making OHI the primary code for
Jamie. As I discussed with (names parent),
children with neurological abnormalities often do
not fit neatly into a pre-existing special-education
category such as Learning Disability (LD). While
Jamie was determined eligible under this code based
on the available information at that time, new
information regarding his neurological conditions
is now available that should supercede the LD code.
Clearly Jamie does not exhibit a learning disability
in the sense that Jamie's current level of academic
skill attainment is significantly discrepant from
Jamie's overall level of cognitive ability. Because
Jamie's neurological conditions directly result in
weaknesses in academic skill development I do not
think that a discussion of Learning Disability as
traditionally defined is particularly relevant to
Jamie's case, as Jamie's learning difficulties
clearly stem from known neurological issues that
directly affect those neurocognitive processes
important for efficient learning. Due to the nature
of the neurological processes involved and given
that epileptogenic activity is an active and dynamic
process, Jamie may sometimes perform in a manner
that is quite inconsistent from one day to another.
Due to difficulty remembering some things, it would
not surprise me if parents and educators had the
experience of Jamie seeming to know something
one day and not recalling it very well the next.
On the topic of memory inefficiency, it is
important to understand how this can impact a
child's performance at school. First, it is
important to recognize that memory inefficiency
can limit the amount and completeness of the
information that the child is able to initially
take in. Sometimes multiple exposures of the
information, and multiple modalities of information
exposure, are necessary to give the child their
best opportunity to successfully encode the information
presented to them. Similarly, children with
inefficiency of learning and memory due to
neurological issues are at significantly greater
risk for being inconsistent in their retention
and later recall of information. Sometimes,
altering the way a question is asked can be
successful in accessing information that the
child has retained but is not able to spontaneously
draw out of their memory (e.g., asking a multiple-
choice question versus a fill in the blank question).

Additional strategies for dealing with Jamie's memory
inefficiencies include:

• Multiple repetitions of information is a
necessary, though sometimes mundane, component
of ensuring that information is satisfactorily
encoded and retained. For children, often the
trick is to be creative in getting the child to
pay attention and put forth effort on an otherwise
tedious task. Sometimes incentives (rewards) can
be offered to a child to help keep them motivated.
Other children simply need frequent breaks in order
to stay motivated to repeat information over and
over. Making the activity of repetition novel and
fun can go a long way in boosting a child's
motivation to go over information multiple times.
Incorporating hands-on activities, using manipulatives
(objects), and using music are some ways that a
child's interest in an otherwise mundane activity
might be boosted.

• Priming - discussion of related topics and how
these may relate to the information at hand. Priming
is especially useful during recall tasks. Previewing
is a type of priming that is done before exposure to
the information in order to activate neural networks
that may then link to the information at hand. Using
recognition memory tasks is also a method of priming.
For example, if a child has trouble spontaneously
reproducing their spelling words, using a multiple
choice format is sometimes helpful.

• Using authentic (real-life) tasks - experiential
learning is typically more efficient than situations
in which the student is given information and expected
to remember it. Experiences that are most salient and
meaningful to Jamie are likely to be remembered best.
Unfortunately, pure skill-based academic tasks
(e.g., reading skills) can be somewhat difficult to
translate into experiential tasks, though reading
practice is easy to translate into meaningful daily
activity.

• Rhymes, chants, and music - this can be especially
helpful for memorizing and retaining relatively small
amounts of factual information.

• Movement - involving movement into learning and
rehearsal of information can sometimes be effective.
For example, some people study effectively by pacing
and rehearsing information aloud to themselves.

• Minimize anxiety - if a child becomes excessively
anxious and/or perceives himself to not be competent
to remember something or retrieve some information
from memory, clearly this can interfere with optimal
performance. Thus, anxiety-producing conditions should
be kept to a minimum. For example, some children become
very anxious during timed activities. A little anxiety
can enhance performance, but more than a little anxiety
can interfere with task performance. For Jamie, it will
be important to identify and minimize conditions that
unnecessarily or artificially create anxiety when this
is not inherent to the task (e.g., allowing Jamie to do
math calculations but not necessarily imposing a
stringent time limit if this tends to create a great
deal of anxiety for Jamie)."

This is only a glimpse of the child's Neuropsychological
Evaluation. The complete Evaluation consists of
a total of sixteen pages. It contains very detailed
information regarding background history, test
results, behavioral observations and results of
behavior rating scales as well as detailed
conclusions and recommendations.

test scores have been replaced
with an "X" for privacy.

UPDATE: 

Neuropyschological Evaluation-FAQs


Any additional information/comments from you
pertaining to Neuropsychological Evaluations
and your own experience is greatly appreciated.

Networking Perks

I was reading a favorite blog of mine a few weeks ago
about one year old Samuel who has Agenesis of the
Corpus Callosum.

One of the best parts about networking with other
parents (besides getting to see and read all about
the cute kids) are the networking perks that happen
when people share information.

Samuel's Mommy wrote:

"Samuel had an occupational therapy evaluation this
week and the therapist was super. He will be starting
weekly therapy with her soon. I am really excited
because her philosophy is one that supports the idea
of neuroplasticity, meaning the brain has the ability
to make new connections and pathways, which is perfect
for our Samuel! Also, on that note, Nic has started
reading a book recommended to us by a physical therapist
called The Brain that Changes Itself--Nic reads, then
relays to me the main points-- its good stuff!"

The Brain That Changes Itself, by Norman Doidge, M.D.

Well, that was enough for me to want to explore
the book in more detail so I went online and
pulled up my library catalog, found the book and
had it sent over to the local library in my county.
I picked it up from the library a couple days later
and sat in my car outside the library reading.

As I quickly skimmed through the pages, I was surprised
to come upon a specific program called Fast ForWord
mentioned in the book that many parents, who have a
child with agenesis of the corpus callosum, have spoken
highly of.

More specifically, you can take a look for yourself
and Read Chapter 3.

Right now I'm looking at Chapter 11 and I suspect that
it will reveal some interesting information as it deals
with a woman who shows them how radically plastic the
brain can be...she was born missing the entire left
hemisphere.

Time for me to get some reading done since this book
has several holds placed on it and time is ticking away
before it is soon due back to the library.

Thank you Samuel's Mommy for mentioning in your blog
the recommendation of The Brain That Changes Itself.
I'm so thankful that you shared it and I love and
always look forward to reading your beautiful blog.

How about you? Got any suggestions? Have you read any
specific books about the brain or anything else that
have been interesting and helpful for you and for your
child who has Agenesis of the Corpus Callosum?

I'd love to hear all about them.

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.

A Mom's Perspective...

Some of you may remember reading Lynnea's story,
an adult who has Agenesis of the Corpus Callosum.

In the past I had contact through a few e-mail
exchanges with Lynnea's mom, Karen. It wasn't
until after I had finished the ACC Reading and
Comprehension document that I thought about
asking Lynnea's mom, Karen, who is a retired
special education teacher if she would like to
contribute information about her daughter, Lynnea
and reading from the perspective of both a Mom
and a Teacher.

Well, I was surprised when I received a story from
Karen about her daughter, ACC, reading and a whole
lot more.

I thought it fitting to share Karen's entire story
here with all of you...

Karen writes:


"My daughter is a word person and has been from the
get go. At the age of four months, I was telling her
repeatedly, “I love you, I love you” and she plainly
and distinctly articulated back to me “I uhh ooh.”
I was beside myself that she could at such a young
age repeat the correct vowel sounds of these words
in sequence back to me, and was certain that no other
child had ever accomplished this. I thought she must
be a genius. Needless to say she actually did begin
to talk early. On the other hand, I was quite disturbed
because other kids her age were walking and she was
not. She was quite late at taking her first steps.
Forgive me for digressing, but it was about this time
that I began to realize that there was something not
normal about my beautiful baby girl. Doctors assured
me that there was nothing to be concerned about and
treated this 34 year old woman as an anxious,
inexperienced mother, and even though my husband had
raised three other children, he was ignored, as well.
We just decided to go on and make the best of things.
There were a few other markers of disability, but she
just seemed so advanced in other areas we hoped that
everything that was late or not right would catch up
and right itself.

From the beginning, I was reading to my daughter on
a daily basis. We started with nursery rhymes and
fairy tales, of which I quickly tired. By the time
she was old enough to remember her early experiences
of being read to by a parent, I had moved on to
children’s Bible stories and by age three her bedtime
stories were “The Hobbit” and “Lord of the Rings”
Trilogy, then the Narnia books. We enjoyed this time
together, while her father was working a late shift,
and then he would be with her during the daytime while
I was at school. Her dad was a music lover and played
music and sang to her and with her daily. By the age
of five she was in ballet, gymnastics and jazz class.
She was successful in ballet and jazz, but gymnastics
was a major challenge. Shortly thereafter she began
taking piano lessons and then went on to play baritone,
tuba and percussion in school band and marching band.
While the thought is really fresh in my mind, I believe
that this early introduction to and instruction in music
was building alternate neural pathways in her brain.
There is a page on her ACCAA site that discusses the
importance of music for children with ACC. She still sings
and is a music lover of all genres.

At about age three Lynnea began using an Apple IIe
computer and some computer disk games for early
learning in math and reading that I brought home
from school on weekends and breaks. She loved the
computer from first sight. Upon entering school,
she knew the alphabet and recognized a variety of
words by site, but we had not pushed her to learn
to read or write other than her name, phone number
and address. She drew some interesting, pictures
when doodling, but has no artistic talent. Her
writing (fine motor) skills have always been weak,
but have improved somewhat as she has matured. She
never learned to tie shoes the usual way; I had to
teach her to tie her shoes the “bunny ear” style
used with special needs children. She also has
problems with some gross motor skills. She has
never learned to ride a bicycle either, even though
three or four people in the neighborhood tried their
best to teach her.

As she progressed through primary school, it did
not take long to learn that the education thing
was not her cup of tea. About the time she was
supposed to be learning cursive writing, we became
very upset that her teacher was not communicating
her difficulties to us properly and was not making
a genuine effort to help Lynnea be successful. At
this time after several conferences, we decided to
transfer her to a different elementary school. She
went to a summer school program to try to catch up
and then as the following year was coming to an end,
the teacher was suggesting that Lynnea might benefit
from repeating third grade even though her grades
were not failing. She was behind in reading and
math. We requested that she be tested for learning
disabilities. The school refused saying that she
was just behind and would not qualify and that there
was no point in putting her through the battery of
tests required to meet eligibility for special
education, not to mention the fact that if she did
qualify, we would not want to put our child in a
classroom with the “type” of children that were
in those classes. End of conversation. We refused
to allow her to be held back and decided that we
would work with her all summer to try to get her
up to level. Reading was not a huge problem.
Lynnea did have some trouble with phonics, and her
comprehension seemed to be a bigger problem when
she became anxious. She could easily tell you what
a story was about, but had some difficulty in
answering direct questions. Math seemed to be her
biggest problem, especially when it came to learning
the multiplication table. Spelling was also a problem
for her. Math and spelling became battles and points
of dissention between child and parent, along with
missing homework and crumpled papers stuffed into
her bookbag.

By this time I wanted to see an IQ score for
Lynnea and since the school refused to test her
for learning disabilities the only way I could
think of to get what I wanted was to refer her
for the gifted program. Lynnea had a vocabulary
of a much older child and was an entrepreneur,
having started a number of successful schemes to
invent things to sell and make money in our
neighborhood. Needless to say, the folks paid for
these somewhat useless objects, mainly because they
thought she was so cute. The gifted teacher’s
instruments of testing were not, in my opinion,
as reliable as those used by the special needs
instructors, but it would give me something to work
with. Low and behold, she had an IQ score of 127
or so, and along with other evaluations used, she
qualified to be placed in the gifted program, during
her fourth grade year. She remained in this program
throughout her middle schools years, and chose to
drop out near the end of the eighth grade. During
middle school Lynnea, had some excellent teachers
who taught her how to spell and read phonetically,
and she took a special class to learn the
multiplication table. She did reasonably well in
middle school, but continued to be an average student,
with serious organization skills deficits. She had
been using a computer since before the age of three,
but I taught her keyboarding when she was in my sixth
grade computer keyboarding class. She caught on quickly
and was soon typing faster than me. I encouraged her
to type papers rather than write from this point
forward.

She did well in independent studies and literature.
She became interested in reading Shakespeare in
middle school. By the time she was actually studying
Shakespeare in high school she was the only one in the
class who actually had any comprehension on his works
and was tutoring “A” students. However, up until this
time she did not seem the least interested in reading
novels.

Lynnea is a very social person, but does have some
difficulty in recognizing some social cues, however
she is a very good judge of character. I think this
ability to understand character has helped her in
reading comprehension. She is able to identify with
characters in a story. Lynnea also happens to be very
witty and I think that understanding humor is a skill
that also relates to good comprehension. She loves
puns and plays on words. She has a poster of her
famous “speak-o’s.” She even sometimes invents words.
The ability to recognize that words can be fun helps
with comprehension skills. I have noticed that kids,
who do not understand humor, also do not have good
reading comprehension skills. Her dad was very witty
and taught her to love humor.

My late husband (Lynnea’s father/Max) spent about
4-5 years working with mentally handicapped individuals
in a residential facility, so both of us had experience
in working with those who have difficulty learning.
One of the things I specifically recall him working
with Lynnea on was locating objects. He would tell
her to get something and bring it to him and she would
look everywhere, and could not seem to focus on the one
object he requested. He would patiently work with her
on identifying the object in her mind until she was able
to picture it then go and lay her hands on it. Soon
she was bringing him the video tape he left laying
somewhere, and unfortunately, his cigarettes. He also
worked tirelessly with her on a physical problem she
had where one foot would turn in. I am sure there are
many other things he did to help her but these two
stand out in my mind more specifically.

Lynnea’s father died of leukemia when she was fifteen
years old. Her school work in the second half of her
freshman year and her sophomore year took a nose dive,
as her father’s illness progressed and grief took its
toll. She had failed three subjects, but had developed
a friendship with a boy about her age who was being
home schooled. During the summer, she approached me
about her desire to be home schooled. The boy had told
her that he was being educated using the A Beka Home
School Program. We went to a local conference that
introduced the program to interested parents and students
and decided we would give it a try. Up to this point
Lynnea hated school and felt that she had been bullied
and mistreated because she was different. I felt that
many of her teachers and staff in high school had been
less than understanding and even blatantly harsh toward
her during her period of grief.

Lynnea shortly became a different person as she began
to get into watching the videos/dvds and doing the
lessons provided in this program. Suddenly, she was
learning and enjoying it for the first time ever.
A Beka was the answer we had been looking for to make
school what it should be. Lynnea was successful, but
decided to re-enroll the second semester of her senior
year so she could graduate with her class. She did
this and then took a year off, before deciding that
she wanted to go to a small Christian college in Ohio.
Our family had always participated in a local church
and practiced our beliefs in the home. Lynnea is a
devout Christian.

Somewhere between the second semester of her senior
year and her first year of college, she took and passed
two driver education classes, got her permit and license,
and wrecked two cars. I was concerned for her safety
and the safety of others. She also had been suffering
from severe migraine headaches for some years. I
decided that she needed to be checked out by a
neurologist, to see if there was anything that could
be done for her to help her with driving and headaches.
He determined that she had some reflex anomaly and
ordered an MRI on her brain.

She was 20 years old when the doctor informed us that
she has no corpus callosum, which according to Kentucky
SE eligibility laws is an Other Health Impairment, not
a Specific Learning Disability. Even though I was a
trained special education teacher (I taught computers
for 12 years) I had never worked with or even seen or
heard of a child who had this diagnosis. Her doctor
immediately worked with us to have a psycho-educational
evaluation performed, so we could determine what learning
issues she had and what recommendations could be made
so she could receive accommodations and modifications
in her college education program. We also made an
effort to get her father’s social security survivor
benefit reinstated, but the SSA denied her benefits for
this as well as for SSI, saying that she could get a
job as a Wal-mart greeter, therefore they could not
justify giving her any benefits, even though a part
of her brain is missing and she is forbidden, by her
physician, to drive a car.

Her biggest difficulties in her college career revolved
around taking tests. She does not do well on certain
kinds of tests. Fortunately, her professors were often
willing to provide needed accommodations including
alternate methods of determining her knowledge of the
subject, such as oral tests, research papers, and essay
type questions, etc. It turns out that she was very
successful in writing papers. She has become an avid
reader, reading all of the Harry Potter series and all
of Jane Austen’s books, as well as countless other books.
Her next greatest difficulty in college was in passing
a required math class. She had to take the class three
times. On the recommendation of her physician she was
not allowed to work while attending college, have a
roommate, or take more than 12-15 credit hours for
semester. It took her five years to get the required
courses to graduate.

While in college she has started her own web-based
organization called Agenesis of the Corpus Callosum
Awareness Association, LLC (ACCAA) to promote
awareness of ACC and provide support for individuals
and families who have to deal with corpus callosum
disorders. She also is the founder of another
organization to help young teen women who deal with
self-esteem issues that lead to other dysfunctions.

Lynnea, like most college students is in debt for her
education, but she had a double major in youth ministry
and in Bible (Theology) and has just received her
Bachelor of Arts degree. She desires a job in Youth
Ministry. She still has challenges to deal with, and
one of the major ones beyond the no driving issue is
being alone as she often gets lost easily, even in
Walmart.

In conclusion, reading comprehension skills are not
a significant problem for Lynnea. She still continues
to use some learning aids to help her remember content.
She loves books and is an avid reader.

I give credit to the Holy God who created us for
guiding us to do the right things for Lynnea many
times when we were unsure of just what was the right
thing to do, and for giving her to us, when we had
the skills and interests to deal with the challenges
of her ACC disorder even though we were unaware of
just exactly what it was for all her formative years.
Our faith and positive attitude, which is a manifestation
of true faith, has been as important to Lynnea’s success
as music, or special education training/experience or
anything else."



You can share your thoughts with Karen by leaving
her a comment. Or feel free to send me an E-mail and
I will be sure that Karen, Lynnea's Mom, receives it.

If you are the parent of a young child or grown child
who has agenesis of the corpus callosum or a corpus
callosum disorder and want to tell your own story and
perspective please contact me.

Meet Patty - An Adult with ACC

Patty & her daughter

The process of telling Patty's story came about
through a series of e-mail conversations that
took some twists and turns along the way but
ultimately wound up revealing her character,
her personality, her sense of humor and helped to
give a better understanding of who Patty is.

In much the same way that Patty's story unfolded
before my own eyes, through a series of questions
and answers, is how you will see her story revealed.

Patty is an adult who has Agenesis of the Corpus
Callosum. But she is also a terrific lady, a
dedicated and passionate teacher, a loving mother
and wife, a Sunday school teacher and so much more.

I know I certainly enjoyed interacting with Patty
and getting to know her better and I hope that you
will too.

It is a privilege and pleasure to introduce Patty.
Here is Patty's story as it unfolded quite
unexpectedly and yet quite naturally in a style
that seemed to fit Patty perfectly.

I received an unexpected e-mail from Patty for the
first time in August of 2009:

*Note: ACC-C = complete Agenesis of the Corpus Callosum

"I am a 34 yr old married mom that has ACC-C.
It was discovered about two years ago. The
neurologist was not much help to me. I have
enlarged ventricles in my brain which I think
are a link to having ACC. I am not sure. I have
educated myself via the websites I have browsed.
My daughter has not been evaluated for any ACC
for herself. Yet she has issues that some kids
have that have ACC. Especially the social aspect
of school and crowds. I am really tired so I am
giong to finish this now. Good Night. Patty"

Many months passed with no further contact.

In May of this year I posted another adult's ACC
story on this blog and then invited any other
adults who have ACC to share their story.

On May 4, 2010 I received a second e-mail
from Patty:

*Note: I have interjected my questions/her answers
within the content of Patty's original e-mail to
help the conversation stay organized and flow more
easily.

"I think I have told you my story. I did not
find out I had ACC until after a car wreck. The
difference is that I was about 31 or 32 year old
before I found out that I have ACC-C. Many things
that don't make sense to me I chalk up to ACC-C.
Even around here I have been researching things
myself since I have been left in the lurch medically.

you said:

"Many things that don't make sense to me I chalk
up to ACC-C."

Can you explain this more and give examples?

"My thyroid hormone imbalances are something I
believe are not accurately measured when my brain
throws a wrong signal to my thyroid. I firmly
believe that my coordination as a child had a lot
to do with having ACC-C. I walked within the normal
range of time, and talked within the normal range
of time. I grew up with 6 brothers and 3 sisters,
so I think that I had some natural OT [occupational
therapy], PT [physical therapy] and ST [speech therapy]
built into my daily routine. (One of my brothers ,
child # 3, has some learning delays because of
having the cord wrapped around his neck at birth
(blue baby).) So, I think that by the time I came
around, being the youngest of the family, my siblings
were going to make sure I was going to be “normal.”
I did not learn how to swim or ride my bike at the
average age. The coordination of some sports
activities were very tough for me to conquer. I
learned how to do it a year or two past the normal
age kids. I was very clumsy as a kid with a lack
of coordination.

I had a huge head from birth until my body caught
up to it. It was not an ugly head but a large head.
There are pictures of me between growth spurts that
I look at now and think “wow, now that is a big melon.”

back to Patty's original e-mail:

"I am a state certified school teacher for WI.
Currently, I teach 4K ( the little guys). I enjoy
it very much. I have to admit that I think this is
the best age for me since I have discovered some new
limitations or rediscovered limitations I used to have
that are present again.

What is 4K (the little guys)? Is that Kindergarten
or 4 year olds in preschool?

"4K is a program was originally designed for
children who struggle with basics, (alphabet,
counting, colors, numbers, and SOCIAL SKILLS) to
have a jump start before kindergarten. It is what
kindergarten used to be 30+ years ago. What I did
as kindergarten student is what I teach my students
minus rest time."

back to Patty's original e-mail:

"It is amazing how when you are diagnosed with
something like ACC-C, a lot of your developmental
years can make more sense now in restropsect. I did
not do well in Math and Science, anything that dealt
with memorizing facts with numbers is not on my favs
list. I did enjoy band and choir class in middle
school and high school."

Since memorizing facts and numbers is difficult for
you, was/is there anything that you do to help you
memorize something more easily?

Can you list specific things that help you memorize?

"I don’t really have much of a short term memory most
times. I have to write down a lot of things in order
to remember dates, times, events, etc. If its not
written down somewhere, consider it not having a chance
to be remembered for long, unless it’s a randomly odd
placed bit of info that has stuck in my brain. I have
to be a creature of habit or I won’t remember where
some important papers or things are kept. If I don’t
tell myself “ I am putting such and such IMPORTANT
paper on top of the refrigerator,” then I may not
recall where I put it. Ie) My mom bought a Younkers
ticket for shopping last school year in November. I
knew she paid for it. I knew I had it. I did not make
a verbal statement to myself where I put it. I did
not find it until the following summer, when I was
searching for something else. It’s pretty sad but
that is one thing I do.

I read it once, read it again, and sometimes read
it a third time before information sinks in unless
I take notes on what I am reading. If I takes notes
my brain see it as a picture, then I can recall it
much faster. I see snapshot pictures of things or
notes in my head and I can recall it better than
just hearing it or reading it once."

back to Patty's original e-mail:

"I wish I could write more but time is ticking
away and I need to finish filling out some
kindergarten screening reports. Patty"

ADDITIONAL QUESTIONS AND PATTY'S ANSWERS:

How did the doctors tell you that you have ACC
when you were diagnosed?

"I was diagnosed with ACC-C after an “abnormal”
EEG(’07), led to an immediate MRI (’07) . A
doctor saw it in ‘03 after a CT scan but chalked
it up to “nothing abnormal,” “nothing that can
be fixed, looks like it was inborn.”

Did the doctor in 2003, who saw that you were
missing your corpus callosum on your CT scan,
give you a specific diagnosis of ACC and then
simply dismiss it as "nothing abnormal"?

"No specific diagnosis, mumbled words with a
nothing abnormal ….. BULL!"

Did the EEG reveal seizure activity and what
kind of "abnormal" activity was revealed on
your EEG if you know?

"NO seizures…. (does a happy dance!) Abnormal was
the gaps due to the ACC from what they had told me.
Again sometimes looking through mud is clearer than
getting straight answers from doctors who are
clueless on ACC-C."

Did the doctors explain ACC to you?

"The neurologist did not know what to say besides
saying it was a Complete Agenesis of the Corpus
Callosum. My mom and I asked him several questions
but he had no experience with patients with this
diagnosis. He explained what he saw on the MRI images.
I had “texas long horn” ventricles in my head. It
was a little concerning to him because one end was
sooooo oversize while the other end went to a rounded
point. (hence the jargon Texas long horn). My optic
nerves showed damage but the damage did not lead
back past the optic region much. Since there was
no corpus callosum, the doctor was impressed to
see the parts of the brain that show without the
c.c. [corpus callosum] there. There was nothing
that he suggested as a treatment. “You seem to be
doing good otherwise neurologically. So I hope you
have a good life.” This was received to me as to say
“good luck, don’t let the door hit ya where the
good Lord split ya.” GRRR! Thanks!"

I asked Patty several questions in an attempt
to piece together why she needed to have an EEG
in 2007 and a CT scan in 2003.

Why did you have an EEG in 2007?

Was the EEG ordered after your car accident?

Were you ever referred to see an ophthalmologist
due to the optic nerve damage that was revealed
on the MRI in 2007?

Why did you have a CT scan in 2003?

"Clarification:
"A doctor saw it in ‘03 after a CT scan but chalked
it up to “nothing abnormal,” “nothing that can be
fixed, looks like it was inborn.”" I was pregnant
with my daughter and had fallen down some steps and
bumped my head I think (can’t recall all details of
the day) The CT scan showed the ACC-C back then. I am
sure of it. But whatever doctor who reviewed my results
saw mine and concluded “ehh no biggie.“ So he literally
mumbled something about something being inborn but not
to worry because everything else looked fine. Can we
say drop kick the doctor and then say… “ehh he’ll be
fine once he catches up to Mars….“

OH YEAH! CT scan in ‘07, I was hit T bone style in an
intersection in the city near here. I was given a CT
scan then since I told me neck hurt. They said the
results of the CT scan was nothing alarming…..
(DUH! They saw the ACC-C, but nothing alarming)
BY THE WAY since this accident I have had the most
issues with brain related functions, thyroid, memory,
moods, etc. I was having a routine eye exam with
an Opthamologist suggested by my regular family med
doctor because I was feeling like I was encountering
some optical migraines mixed with hypoglycemic episodes…..
(Talk about the wrong type of medical cocktail NOT to
have when driving…… I plunked my car in the ditch on
its side, as gracefully as a Buick Lesabre can tip
that is….. Meanwhile I am saying JESUS OHHH JESUS! )

So the ophthalmologist did his normal exam. I flunked
the field of vision test once and retested (guessing
on about 25% of flashes)passing the second or third
time. Also he discovered there was optic nerve damage
in each eye. I want to say my left was worse than my
right… He was a bit concerned because I was in my early
30s. So that optho ordered an MRI and BINGO…. WE HAVE
A WINNER….. YOU HAVE WON THE PRIZE OF…… oh my lands…
what is this? What? Agenesis of the corpus callosum….
Not much said to me EVEN THEN! “Let’s watch your optic
nerve damage and use this as a baseline.“ says the
Opthalmalagist.

Do you have a specific diagnosis involving your
optic nerves?

"N o diagnosis but the picture of my optic nerves
are forever as a picture in my brain seared there,
with the cupping and the gaps,, oh yeah! I see it!"

"The ophthalmologist saw the nerve damage but the
MRI showed it did not extend into the brain at a
dangerous point. He was “not concerned”."

"*******Since all this my awareness has been heightened
by my own research. If you don’t look out for yourself
who will? Doctors… cha… right… anyways

New doctors ordered new tests when I switched clinics
after still having hypoglycemic issues….. So the new
doctor orders an EEG to make sure I am not having
seizures and rule in that it is borderline hypoglycemic
so keep eating routinely…..WHAMO….. ALERT! ALERT !
After the EEG “PLEASE COME IN TOMORROW FOR AN MRI.”
why I ask “all it says was there is abnormal readings
on the results. Just please come in on a Saturday for
an MRI.” man that tracer stuff gets you cold …brrrr!
A few days later, I go in for my “results” of the MRI
with my mom,. Since my mom knows more developmental
questions than I do, I take her for answers if they
ask me any of those questions. Which explains the :
I was diagnosed with ACC-C after an “abnormal” EEG(’07),
led to an immediate MRI (’07) ."

you wrote:

"man that tracer stuff gets you cold...brrr!"

Can you please explain what you mean?

"At one point during the MRI they took me out of
the MRI tube and injected some "contrast" fluid
into a vein in my arm. IT made my hand very cold
and then the cold feeling ran up my arm. The
tracer helps to see the flow of fluid moving from
point A to point B. It was a small amount of
contrast but it left a metallic taste in my mouth
for a little bit of time."

Did you find out most of the information you know
about ACC from your own research on the internet
and from other people who have ACC or parents who
have a child with ACC?

"I found out most of my information by looking up
ACC on my own through research on the internet.
I found MRI images that looked identical to mine
from a medical website. I am sorry I can not recall
what site it was, I looked up information by using a
specific ACC-C search. It is simply nothing better
than feeling validated when you see someone else in
the world that has a brain that looks like yours.
Through my research I found out more correlations
to my optic nerve problems and thyroid issues."

Earlier in your May 4, 2010 e-mail you wrote:

"I have discovered some new limitations or
rediscovered limitations I used to have that
are present again."

What are some of the new and rediscovered
limitations?

Can you explain them in more detail?

"Since my automobile accident March 7, 2007 and a
minor one in October 2007. I have discovered
limitations I have as an adult. I truly believe
that those minor bouts of disorientation have
short circuited my brain more than I would have
preferred. I say that because I have less
capability to process information as quick as I
did in college. I have to slow down when receiving
new information not ever learned before. My ability
to process information that adds to what is stored
in my long term memory is still doing okay.
(e.g. I recently took a 2 cr. [2 credit]-8 lesson
Spanish class for teachers. I finished it in 9 days
doing it after my house was quiet for the night. The
last time I took Spanish was in h.s. although I have
spoken minimal Spanish with my students). I have
less capability to handle stress, and process it
effectively, that used to roll off my back.

My hypothyroidism has put limitations on me as well.
Since the hypothalamus runs most effectively with a
functional corpus callosum, some months have turned
out to be a “crap shoot” for the lack of better terms.
I say this because I do not know if thyroid is going
to receive the meds properly or if its going to not
receive it because I did not follow every letter of
the law when taking the meds. Regardless I need more
sleep than most people, on average. I have to watch
my diet because food can affect absorption of the
thyroid meds. I need to keep moderately active, too
much is bad and too little is bad."

When were you diagnosed with hypothyroidism?

"1995. Holy cow it has been 15 years…. Yikes!
Spring of my first semester away at college
(2nd yr in college)."

Does hypothyroidism or thyroid disorders run
in your family?

"My maternal grandma had thyroid issues since my
hypothyroidism diagnosis, one of my sisters has
been on meds for it also for about 4 or 5 years
too"

you wrote:

"Since my automobile accident March 7, 2007 and a minor
one in October 2007. I have discovered limitations I
have as an adult. I truly believe that those minor bouts
of disorientation have short circuited my brain more than
I would have preferred."

Can you explain and give more detail about the "minor
bouts of disorientation"?

"These bouts of disorientation had come more when my
thyroid hormone levels were off along with my sleep
pattern or eating patterns. If I am not a clockwork
kid with my life, then I can wreak havoc that trickles
into my sanity. Last summer, my thyroid TSH levels
were so whacked along with something else undiagnosed
that I had a terrible summer overall. We are talking
emotionally off, physically un-energized, and mentally
not being able to handle much stress, even the healthy
amounts of it.

Did the "disorientation" begin after the car accidents?

"Yes and No."

Do you still have "minor bouts of disorientation"?

"I don’t get it much any more. Although a few weeks ago
I had it and my chiropractor wants me to time it and
chart it on a calendar because it may have something to
do with hormonal changes so many days after menstruation.
Great thing to talk to a male Chiro. about right?!"

you wrote:

"I truly believe that those minor bouts of disorientation
have short circuited my brain..."

When you say that the disorientation has
"short circuited my brain", are you referring
to the loss of short term memory that you deal
with now?

"YES I am talking about my memory."

Did you at any time BEFORE the car accidents deal
with any short term memory loss or difficulty with
memory and remembering things?

"No. I did my college all before that and even having
kids before my short term memory loss started going.
If you can maintain memory in college and during
pregnancy and childbirth, then you are pretty good
right???!!"

Do you have any other medical conditions in addition
to having complete Agenesis of the Corpus Callosum
and hypothyroidism?

"I have no curve in my neck. But that gets adjusted
by a cute, sassy, younger than me, knowledgeable
chiropractor that has helped me more with my thyroid
problems more than my own med doctor in the past few
years."

During our e-mail exchanges Patty revealed a few
additional things about herself that I will include
here for those of you reading her story.

Patty said:

"I can have random, unorganized thoughts, hence that
is why I answered the question right after it was
asked. So if you can piece everyting together that
I told you, it would be impressive.lol"

On the contrary, it is definitely the other way
around; I am impressed with Patty the person,
the teacher and the Mom amidst her challenges.
I am especially impressed with her kindness,
openness and I am thankful for the enlightening,
insightful and very valuable information that
Patty is willing to share with others.

Did you struggle with social skills as a child
in school?

"I did not struggle much with social skills. I knew
the social graces and proper manners to have when in
public. I have been “very emotional” since little on.
So, I have been easy put to tears over small things.
I was not a popular student. It probably was because
I was a sensitive child to getting my feelings hurt."

Do you struggle with any social skills or
socializing now as an adult?

"I am pretty social as an adult. As my husband says
“ you can make a good conversation with an ant.” I
avoid useless people, people who I have been kind to
or friendly to and they don’t give me the time of day.
Phooey on them. I am selective on how I socialize. I
have a select group of friends I like to hang with.
We don’t get to see each other much, so face book has
helped me connect with old friends and make new ones
through acquaintances."

Did you attend a mainstream classroom?

"I attended a mainstream classroom. I was a good
reader so I was in the above average reading group.
I did take years of summer school for math because
the drill and practice of math facts were painstaking
for me. It paid off when I went to a prep school for
h.s. [high school] and took for years of math. I only
did average in those classes but it was better than
taking remedial classes."

Did you receive Special Education Resource help?

"I did not qualify for SP.Ed. [Special Education]
Resource help. The more cerebral multi task problems
just took me longer to do but I completed them in the
given time."

Can you ride a bike and drive a car?

"I ride a bike and drive a stick shift car. I love
my car because I feel like I am back in college.
(The best part of my early adult life. Ahh the memories!)"

Did you attend college and get a degree? I assume
that you did attend a four year college and you
received a teaching degree."

"I attended the University of Wisconsin -Stout.
I received a Bachelor’s degree in Early Childhood
Education, in 1999. I taught one year at a day care
without having my license. I was hired from just
having my degree. I am in the process of renewing
my license a second time, every 5 years I must take
6 credits of classes. I have taken several classes
that relate to managing a classroom with a variety
of students, ELL [English Language Learners] and
special needs."

Is your daughter your only child?

"I have a daughter who will be 7 in June and a
son who is 5."

What do you enjoy doing the most in life...
what are you passionate about

"Personal: My deepest passion is that I use my
knowledge to make informed decision and to empower
other people with the information I can pass along
to them. I want to learn as much as I can about
ACC-C from educated neurologists. So I put the
puzzle pieces that are still missing into my life
with solid answers."

"Career: I am most passionate about having my
students have my classroom as the best environment
for learning to happen. I want to be as fluent as
I can in Spanish to communicate effectively with
families of my students."

It is very evident to me that Patty is a dedicated
teacher who cares about helping her students learn
and I have seen her passion for teaching and helping
kids/students take place before my own eyes.

Patty belongs to one of the same ACC online e-mail
support groups that I belong to. In fact, just
recently Patty reached out to the parent of a young
child who has Agenesis of the Corpus Callosum who
was asking for help with her child's learning needs
and challenges. Patty gave advice to the parent and
offered specific, detailed teaching methods and ideas
to try. Along with Patty's specific reply to the parent
she also included this information:

"If you stimulate the different hemispheres of the
brain with crawling activities and stretching across
the body activities, the brain will begin to be
stimulated.

Even with having a ACC-C myself. I have found that
these midline crossing activities help my cognition
to engage better that day, and I am the teacher!

Look into a local S.M.A.R.T. training program near you.
The program is for struggling students in the early years.
The program is very hands on and was designed by some
people who had children with special needs. It combines,
OT and PT and ST mixed in. The activities themselves are
between 2-5 minutes each."

S.M.A.R.T. stands for:

Stimulating Maturity through Accelerated Readiness
Training.

SMART is a multisensory program.

Many kids who have Agenesis of the Corpus Callosum
have benefited from using a multisensory teaching
approach. The midline crossing exercises that are
incorporated into S.M.A.R.T are an added bonus for
someone who has ACC.

The S.M.A.R.T program is being implemented into
some schools in pre-kindergarten, kindergarten and
in some first and second grade classrooms and seems
to be a big hit with the students and staff.

Because I have a child who has Agenesis of the Corpus
Callosum, I was curious to learn more about S.M.A.R.T.

I asked Patty:

Do you know of a specific website for S.M.A.R.T.?

"I have my resources at school. go figure. SO I
would have to look the website information when
I get back to school. I can check on Monday.
I know there is a 4 day training seminar that all
"moderators" (and teachers too) are supposed to
take to be accurately trained. I am doing the
budget version and having my sister train me
(until my district would pay all or part of my
way of course.) My sister is the moderator for
her school. So she does the activities with all
kindergarten, all first grade and some second grade
students. She had them on a weekly scheduled time
just as gym or art would be scheduled. The reading
and math scores have greatly improved in one years
time from the impletation of this program. She has
several of the large motor activities done in her
classroom. In addition, each of the dedicated
teachers do more activities in their daily routines
such as I do. The only class that did not show
improvement with measurable success was from a
teacher, who had students in a half day program.
She was "too busy" to be consistent and take time
to do the activities. I heard that and knew I
could make it work in my half day program.

I will send you an email containing exact details
off the materials that I have at school. I should
have time to grab the books on Monday... if I
remember.... ha! I crack myself up! Note to self:
bring SMART books home! I know the creators of this
program set out to help their own child with special
needs. It worked for them so they wanted to share it
with others!"

I love that Patty is able to make a joke about her
difficulty with short-term memory loss and can laugh
at herself.

In my own research I found the following information
about S.M.A.R.T. and will share it here for anyone who,
like me, may be curious and interested:

Check out a school in Wisconsin where a teacher uses the
S.M.A.R.T. program with the PreK students in her class.

The teacher, Miss Beth, wrote:

"The S.M.A.R.T. curriculum is designed to help each
student progress at her or his own rate and to enrich
and enhance the student's abilities in a positive and
"play-like" atmosphere."

Have a detailed look at S.M.A.R.T. in the News

and

A S.M.A.R.T. new program at Jefferson

Minnesota Learning Resource Center-S.M.A.R.T. Info.


S.M.A.R.T. News-April/May 2008

S.M.A.R.T. Newsletter Archives and E-Mail Sign Up

S.M.A.R.T. Online Resources

I asked Patty:

Do you do midline activities with the students
in your classroom?

"I do midline activities every day. I have received
many compliments from parents that they have new
children with their profound improvement of skills.
I have not done a ton of "academics" I do a ton of
"train the brain" activities. It may look like we
don't do much to the untrained professional. Yet by
golly I have a class of students, where 95% of them
are ready for Kindergarten. Hallelujah!"

"I do the "hulk stretch" where we reach up and grab
something, with both hands, big from the sky on the
left and carry "it" over to the right side with our
arms going from extended up to lowered down and SMASH
the thing across our knees. My 4 year olds of course
have to show me a good "grrr" muscle pose before it
as a added humorous body building move! Hulk-smash...
get it! Then we do the crossover "smashing about five
times on each knee, alternating left/right/ left right/
etc....."

alligator crawl - picture not Patty's class


"We do the alligator crawl where their belly must
stay on the floor but they have to crawl with
their bottoms down also, Their knees alternate
as if to crawl, left arm up right knee up, right
arm up left knee up. Their bottoms must be down
at all times and their arms can not carry them
they must bring their knees up in te correct
pattern. I had 3 to 4 kids who could not do it
in October that are able to do it more successfully
now. THey do not do it 100 % all the time but their
success is up from 0% correct body patterns to about
75% of the path is done correctly. My path for this
is about 10 - 15 feet long. I moved tables and chairs
away from a part of the room."

"I do the bear crawl where their hands and feet
do the crawling pattern with their bottom in the
air....I had a few kids tip over from having their
legs go faster than their hands...The length of
the path is the same as the gator crawl.

I do a flamingo stand with one foot in the air at
a time, counting to 5 at first, then building to a
count of 10. Also I do a heel tap where the child
stands up and taps the right heel with the left
hand both in front of the body for x amount of
times and then behind the body for x amount of
times."

sensory crawl - picture is not Patty's class


"There is a sensory crawl where pictures of objects
are in clear pockets taped to the floor. The child
names the object and taps the picture. then he
crawls to the next picture on the floor and does
the same. use 10 pictures of objects at least.

Hook board- little mug hooks are on a post and a
child puts varying size washers on the hooks all
with one hand and then uses the other hand to take
all the washers off. start with bigger washers
and then move to smaller washers.

Wipe off boards- Make simple maze patterns and
have the child follow the right path with their
finger first. Another activitiy is drawing letters
or lines on the wipe off board and have the child
erase the lines using their pointer finger.

Use small tongs (without the sliding ring- it
pinches fingers) and have kids pick up pon poms
from small bins, putting them from one bin to
another bin.

Do the same with eye brow tweezers and small
pon poms or beads. Boy do they really have to
concentrate on that! I love their little tongues
sticking out trying to focus on a steady hand."

spin in circles - picture is not Patty's class


"Spin in circles counting to ten. or get a
"sit and spin" and let it rip (counting to 10)!
Then reverse the direction they are spinning.
I had horrible problems with one girl's need
to spin before I was told by my sister
(trained in SMART) " let her do it"
"do it daily" we did it daily for 4 weeks.
She was a new child! She sat still better
and had better focus after we spun! Spinning
builds the core muscles in their belly needed
to sit better on chairs.
I could on and on....."

She could go on and on and I could listen to
her with great interest.

In closing, during our ending e-mail exchange,
Patty shared some information with me about
herself that I believe is valuable and should be
shared here:

In actuality, thinking of all these specific questions
has worn me out a bit mentally. I need to recoperate and
get my gears switched to more college classes within the
next week. I have a three credit class starting soon. I
have not taken a 3 credit class in 5 years. So with my
preparation for a church youth rally, 4K graduation,
spring concert, end of the year picnic, my college class,
and being a Sunday school teacher, my next month is going
to be out of control buzy. I pray my brain keeps up so it
doesn't short circuit and make me an emotional basket case.
My limitations are very apparent with needing sleep
having hypothyroidism, food to keep me from becoming
hypoglycemic, and personal time so my brain can process
and organize the day's events- overstimulation can make
my brain hemispheres feel further apart. (my speech gets
garbled, my mental fog becomes as bad as pea soup, and
my emotions become a roller coaster ride)
God Bless, Patty"

As a mom myself of a child who has Agenesis of the
Corpus Callosum, I am highly interested in what Patty
has to say from both the perspective of an adult, who
has ACC, and as a teacher.

Thank you very much, Patty, for your willingness
to openly share your story, for taking the time to
answer my questions and also for sharing some of
the S.M.A.R.T. multisensory and midline crossing
exercises that you do daily with the students in
your classroom.

I thoroughly enjoyed meeting Patty and having the
pleasure of getting to know her better and I hope
that you have as well.

Won't you take a minute to let Patty know what
you think by leaving a comment for her.


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Invitation for Adults with ACC