Monday, June 28, 2010

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

"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

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
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

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

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

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

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

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

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: 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?

    Friday, June 18, 2010


    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

    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.


    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

    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

    "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

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

    "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.

    Monday, June 14, 2010

    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


    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

    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
    Digit Span
    Picture Concepts
    Letter-Number Sequencing
    Matrix Reasoning
    Symbol Search

    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
    Math Fluency
    Applied Problems
    Brief Writing
    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

    • 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.


    Neuropyschological Evaluation-FAQs

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

    Tuesday, June 8, 2010

    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

    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.

    Wednesday, June 2, 2010

    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.