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.