US National Parks Access Pass-Free


America the Beautiful - National Parks
and Federal Recreational Lands Pass-
Access Pass-Free.

What is it?

This pass allows a US citizen who
has a permanent disability to get in
to National Parks in the United
States for free!


~photo of Crater Lake in Oregon
by Malgorzata Kopczynska who resides in Poland.



You can read more about the free
America the Beautiful Access Pass
below:


“This is a lifetime pass for U.S. citizens
or permanent residents with permanent
disabilities. Documentation is required to
obtain the pass. Acceptable documentation
includes: statement by a licensed physician;
document issued by a Federal agency such as
the Veteran’s Administration, Social Security
Disability Income or Supplemental Security
Income; or document issued by a State agency
such as a vocational rehabilitation agency.
The pass provides access to, and use of,
Federal recreation sites that charge an
Entrance or Standard Amenity. The pass
admits the pass holder and passengers in a
non-commercial vehicle at per vehicle fee
areas and pass holder + 3 adults, not to
exceed 4 adults, at per person fee areas
(children under 16 are admitted free).
The pass can only be obtained in person
at the park
. The Access Pass provides
a 50 percent discount on some Expanded
Amenity Fees charged for facilities and
services such as camping, swimming, boat
launching, and specialized interpretive
services. In some cases where Expanded
Amenity Fees are charged, only the pass
holder will be given the 50 percent price
reduction. The pass is non-transferable
and generally does NOT cover or reduce
special recreation permit fees or fees
charged by concessionaires.”

National Park Service

The USGS website offers detailed information
about the National Parks Free-
Access Pass. Below is some pertinent
info quoted from their site:


"1. Who qualifies for the Access Pass?
The pass may be issued to U.S. citizens or
permanent residents that have been medically
determined to have a permanent disability
that severely limits one or more major life
activities. A permanent disability is a
permanent physical, mental, or sensory
impairment that substantially limits one or
more major life activities, such as caring
for oneself, performing manual tasks, walking,
seeing, hearing, speaking, breathing, learning,
and working.

2. If I am partially disabled do I qualify for
the Access Pass? The disability requirements
for the Access Pass are not based on percentage
of disability. To qualify for the Pass the
disability must be permanent and limit one or
more major life activities.

3. How do I prove I'm permanently disabled?
Some examples of acceptable documentation
include:

Statement by a licensed physician;

Document issued by Federal agency such
as the Veteran's Administration, Social
Security Disability Income, or
Supplemental Security Income;

Document issued by a State agency such
as a vocational rehabilitation agency."

"HOW TO OBTAIN AN ACCESS PASS

Where can I obtain an Access Pass?

1. An Access Pass can be obtained in person
from a participating Federal recreation site or
office."
Bureau of Land Management
Bureau of Reclamation
Fish & Wildlife Service
USDA Forest Service
National Park Service

This is a great incentive to get your family
together and spend time in our beautiful
National Parks.



Why not go get the America the Beautiful-
National Parks-Access Pass Free

and then...

Find a US National Park




Note: America the Beautiful free access pass replaces
the previously issued Golden Access passports.
The Golden Access passports are still valid and
honored for the lifetime of the owner
.

Riding a Bike


Riding a bike for kids is just plain fun.

Learning to ride a bike is something taken
for granted and assumed will naturally happen
at a certain age and developmental level in
kids.

Learning to ride a bike for some kids who have
Agenesis of the Corpus Callosum or a corpus
callosum disorder is not always an easy skill.

Some kids who have ACC may not struggle with
learning to ride a bike.

Others may have varying degrees of difficulty
learning to master the art of riding a two-wheel
bike.

Some kids with ACC may struggle immensely with
riding a bike and even with being able to ride
a regular trike. My son, Matthew, is one of
those kids.

When Matthew was enrolled in public school he
was involved in an adaptive physical education
class. That is where my child learned how to
ride a Rifton adaptive trike.


Rifton Trikes. We love them!!

Why?

Because Rifton makes it possible for my child,
Matthew, who has complete Agenesis of the
Corpus Callosum to be able to ride a 'bike'
and have fun outside just like all the other
kids who ride bikes.



Rifton trikes come in three colors


and three sizes:

Rifton-Ranger (small trike)



Rifton-Rustler (medium trike)


Rifton-Wrangler (large trike)


and you have the option of choosing from any of
the three colors for any size trike:

Red


Blue


Electric Lime


Rifton offers two sizes of seats:


Rifton also offers two types of handlebars:




Loop handlebars



Conventional handlebars

Rifton trikes come with pedal straps-

(perfect for my child)


In addition you may choose from other accessories
to add to the trike.

Rifton trikes also provide great exercise opportunity
and can help to build muscle strength on top of being
kid friendly fun!

Your child may very well learn to ride a two-wheel
bike...with much practice and help. So keep on
turning those wheels and trying.

Below are some things I found that may be helpful:


"The Undersized Bike Approach

The ideal bike for learning to ride, whether for a child or a
deprived adult, is a bike that is "too small" for efficient
riding. For learning purposes, the rider should be able to
sit on the saddle with both feet flat on the ground and the
knees slightly bent. The bike can then be used as a hobby
horse or scooter, with the feet always ready to stop a fall.
It may even be useful to remove the pedals at first, so
that the feet can swing freely. Ideally, a bike for this
approach should have at least one hand brake, so that the
child can stop while using both feet for balance. A good
place to practice is on a grassy field, perhaps with a slight
downgrade.

Unfortunately, it is often difficult for parents to justify
the expense of a smaller bike that will be outgrown shortly,
so there is a constant temptation to buy a bike that is a bit
too large on the theory that the child will "grow into" it."
~by Sheldon Brown
Teaching Kids to Ride

In addition, there is an article in The Callosal Connection, Spring 2003 edition entitled: "Learning to Ride a Bike - One Step at a Time".
You can find the bike riding story (written by the mom of a child with Agenesis of the Corpus Callosum) on Pages 3 and 4 of the link above.


If you have a child who you feel may benefit from
a Rifton adaptive trike, definitely talk with your
child's physical therapist for their professional
opinion and advice.

We got our first Rifton adaptive trike for Matthew
when he was in the beginning of grade school. We
were lucky to have help with a big portion of
funding for the trike and we paid the remaining
balance out-of-pocket.

Matthew is now using his second Rifton trike-one
size bigger (since he outgrew the small size)
and he still enjoys pedaling those pedals and
steering his way around our neighborhood with
Mom or Dad beside him.

Explore funding options for Rifton adaptive trikes
through your medical insurance, developmental
disabilities family support plans or other funding
opportunities that may be available.

I can personally recommend Rifton as I have dealt
with them. I find Rifton to be a wonderful
company that makes excellent adaptive trikes and
they have super customer service too.

I am happy to share with you our own experience
with Rifton trikes so if you have any questions just
E-Mail me.

More information about these adaptive trikes can
be found at Rifton.

Remember to be safe and wear a helmet.


Are you an adult with ACC who would like to comment
about your own experience with bike riding?

Does your child with ACC ride a bike? Do you have
any tips and suggestions for what worked to help
your own child learn to ride a two wheel bike?

Have you found other adaptive trikes or bikes that
work for your child?

Your comments are valuable and help other people.

Reflections

Mirror Mirror on the Wall...
Who's the cutest of them all?

Babies love mirrors.



Mirrors allow babies the ability to see
their world in a whole new, unique way
from a different perspective.



Mirror play and exploration allows a baby
the ability to learn and make sense of their
world through the use of additional input.

Mirrors give a baby and child the ability
to take in information in a self-absorbing
way that is as mesmerizing as is educational.



My own child, Matthew, who has complete Agenesis
of the Corpus Callosum, loved mirrors and still
does. In fact, he was fascinated with mirrors.
He would spend a great deal of time in front of
a mirror watching himself open his mouth, and
move his mouth.

Many speech therapists use mirrors in speech
therapy sessions.



Mirrors were also used often by my child's Speech
and Physical Therapists during therapy sessions
when he was younger.



As Matthew got a little bigger I began to notice
how often his attention would be captured by
his own reflection in a mirror or in another
reflective surface such as the black panel on
the front of our dishwasher.

At first, I thought maybe it was a little too
much and I wondered why he would spend so much
time looking into mirrors.

Then I began to see and realize that, for Matthew,
a mirror and other reflective surfaces became his
window into making sense of his own self.

At that time (during this reflective exploration-
play) he used his upper body and his arms good
but he didn’t move his legs as much.

He would sit in front of the reflective diswasher
panel with his legs outstretched (while I was busy
in the kitchen) and he would move his legs in front
of that black reflective panel over and over while
watching himself. It was fascinating to me to
watch him exploring and learning. Matthew was
well past the typical baby/toddler time while this
exploration was going on.

I realized, and it made sense to me, that this
reflective surface and mirror exploration time
is the input that is helping him learn. It was
and still is an important way for Matthew to receive
much needed input in order to make a connection
and learn something new.

In addition to mirror time, Matthew also benefits
from Mommy being his mirror. When he was very
small I would sit him on my lap facing me.
(Now that he is older and too big to sit on my lap
facing me I get down in front of him face-to-face).
I choose a word or a sound and very slowly say the
word or sound with long, exaggerated movements
of my mouth breaking down the word into tiny
fragments.

Matthew was fascinated with this interaction
between us just like with the mirror time. We
did this (and still do this interactive learning
play) often. He will watch my mouth intently as
it moves slowly. Sometimes he will just watch,
then sign "more" when I am done. He may even sign
"more" many many times but he needs that repetition
and craves it. Sometimes he will just watch,
sometimes he will attempt to slightly move his
mouth, sometimes he will move his mouth and make
a sound. I always encourage him to try to make
the sound or word when I am finished by saying
"Matthew do it" and then give him the opportunity
to try it. Even if he just makes an attempt to
mimic in some small way, I praise him and encourage
him to continue to try to make the sound.

And, over the years it has helped Matthew learn
in several ways.

Through the hours spent in front of a reflective
surface, he learned to become aware of his own
legs and discovered that he had the ability to
move his legs and control them in different ways.
He began using his legs better.

Through a year of watching himself in the car
window reflection (nearly every day when I would
pick him up from school) and watching mommy SAY
“bye bye”, then trying it for himself or just
watching and maybe attempting to move his mouth
he said his first word.

That year of input in front of the reflection of
himself and Mommy in the car window with repeated
“bye byes” was crucial input for Matthew and what
he required in order to make connections, process
it and then be able to say it…his first word at
almost 6 years old.

Today, Matthew still receives wonderful input
from seeing his own reflection in a mirror
or other reflective surfaces. I welcome it,
encourage it and love it because it's his
own discovery and it serves a purpose and
aids in his ability to learn.

The art of reflecting back may indeed bring to
light some hidden consistencies you see in your
own child that open the door to a method and
discovery for how to more effectively help your
own child in self discovery, new skills and be
helpful tools for educational purposes.

Your own child may not be fascinated with mirrors
or reflections but there are more than likely
other wonderful ways and methods that they need
to help them learn.

I believe that if you pay close attention, allow
yourself to be open to the many things that your
child is doing (that may even seem or appear to
be a little unusual or different to you or I) and
if you look deeply enough you may very well
discover a valuable tool that your own child has
discovered for himself or herself that is just
right for them and exactly what they need to help
them process and learn new skills.

You quite possibly might even discover a brand, new
exciting teaching tool or method that works for your
child as a result of taking one step back and just
observing very carefully.

ACC & Your Child At School-Part 2


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


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

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

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

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

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

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

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

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

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



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

Other Educational Information: (two are pdf files)

Educational Suggestions For Children With ACC

Neuropsychological Assessment

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

ACC & Your Child At School-Part 1

A Guide to the Individualized Education Program (IEP)

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


Important things to keep in mind:

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

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

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

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

5. Take someone with you to the IEP meetings.

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

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

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

9. Listen to your inner voice.

10. Stay Involved.

In conclusion, I found this:


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


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


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

ACC & Your Child At School-Part 1

ACC and Me Book


Did you know there is a book for kids
about ACC?

It's true AND it's adorable too. I have
a copy of the book for my own child,
Matthew, who has complete Agenesis of the
Corpus Callosum.

ACC and Me is a children's book about a
10 year old boy who has Agenesis of the
Corpus Callosum (ACC).

The book is illustrated in beautiful,
colorful drawings and explains what the
corpus callosum is in simple, easy to
understand language.

ACC and Me is a perfect teaching tool
for your child's classroom to help
inform and educate your child's teacher
and classmates about ACC.

ACC and Me is written by Kathryn J. Schilmoeller
and Lynn K. Paul and is illustrated by
Cindy Mauro Reisenauer. All three women
have experience with ACC.

Kathryn J. Schilmoeller, writer, is the
co-founder of the ACC Network as well as the
mom of a grown son with ACC who is high
functioning.

Lynn K. Paul, writer, is the Director of the
Corpus Callosum Research Program at Caltech
as well as the founding President for the
National Organization For Disorders of the
Corpus Callosum. (NODCC).

Cindy Mauro Reisenauer, illustrator, is the
mom of a grown child with ACC.

If you don't have your own copy of ACC and Me
and would like to order the book you can
find out more information below:

How To Get a Copy of ACC and Me:


You can get a free copy of the ACC & Me book by
registering as a first-time member of the NODCC
(National Organization for Disorders of the
Corpus Callosum). The book comes as part of the
welcome packet. There is no fee to join, however,
they do accept donations of any amount.

Register and
become a member of the NODCC online
or
by E-Mail.

If you already have the ACC & Me book but
would like additional copies, the NODCC
asks for $10 for each additional ACC & Me
book plus shipping.

Order a copy of the ACC & Me
book


NODCC
PMB 363
18032-C Lemon Drive
Yorba Linda, CA 92886
USA
E-Mail
Phone : (714) 747-0063
FAX : (714) 693-0808


Note: Please be advised that the books are no
longer available through The ACC Network. The
ACC & Me book is only available through the
National Organization for Disorders of the
Corpus Callosum - (NODCC).



Food...Fantastic Fun?


Food...it's such a natural and delightful
part of life. It's good, it's healthy
and it's fun to eat our favorite foods.


For some babies and kids with Agenesis
of the Corpus Callosum food is a
subject that comes with many issues
and feeding is not always easily
tolerated.

My child, Matthew, is one of those
kids with complete Agenesis of the
Corpus Callosum who has feeding issues.

Table foods or chunky, lumpy foods with
textures are not fantastic fun and he
still has feeding issues with table foods
today.

For my own child, Matthew, he could
drink from a bottle but when he learned
to sit up by himself, he wasn't able
to sit up while drinking his bottle.
He could not coordinate sitting up,
putting the bottle in his mouth,
tipping his head back AND swallowing
all at the same time. It was just
too difficult for him.

Matthew drank from a bottle until he
was five years old and was not able
to drink any other way.

Then one day *poof* he just gave up
the bottle and I thought OH NO!
Now how will I get him to drink enough
fluids?

He wasn't drinking from a cup
yet and struggled with being able to get
enough to drink even from a sippy
cup/with lid.

We tried many different cups and ways
and I even tried a few times to get him
to take a bottle again when he was sick
and had fevers just to get enough fluids
in him but he wouldn't go back to the bottle.

Even today, Matthew does NOT like
drinking. It can be a chore to get
fluids in him.

In fact, he pushes a picture button
on his communication device (of a little
boy holding a cup to his mouth) that says:

"I do not like water!"

And he really does NOT like water
or juice or anything to drink.

We did find it somewhat helpful if
we gave him thickened liquids such
as smoothie drinks.

When he was in public school they
discovered a wonderful cup to help
him be able to drink from an open
cup without a lid and still allow
him to be sitting up but not have to
tip his head back to drink and swallow.



They are called nosey cups or cut-out cups.
Matthew uses the 2 oz size (color-blue) and
we still use this cup today. He used it
much better while in school though and still
doesn't like to drink for Mom. He is able to
drink from this cup easily and will hold
it with both hands, bring it to his mouth
by himself, take a drink, swallow and replace
the cup back down on the table.

More information about nosey cups can
be found at the Achievement Products
catalog below:

blue nosey cut-out cups

Another product we found useful to help with
self-feeding is the maroon spoons.



Once Matthew outgrew the baby spoons and
began to learn to self-feed he was
able to get a good grip on this spoon.

His therapist told me to be sure, when
I was feeding him with this spoon, to
put the spoon to Matthew's mouth but
to allow him to do the lip closure
around the spoon and then pull the
spoon out. This spoon is designed to
help promote lip closure.

We used both the small size and then
as he got older the large size of
maroon spoons and they were our favorite
spoons. In fact, I still have one of
each in my kitchen drawer...hmmm...guess
I couldn't part with them. :)

More information about the maroon
spoons can be found at the Achievement
Products catalog below:

Maroon Spoons

One last product that I was thrilled to
find is a bib that worked for Matthew
when he was in grade school, had outgrown
the toddler/kid-size bibs but still
needed a bib while feeding himself.

These are a couple styles of bibs I like
and used for Matthew:



Adult Plaid Green Bib @ Assisted Living


Adult Plaid Plaid Green Bib @ Personal Touch Health Care Apparel





blue adult-bib terrycloth with vinyl backing


For my child, Matthew, I prefer to use
the Velcro closure style bibs.

You can find many different styles of
bibs in the catalogs below:

Assisted Living Store-Bibs


Personal Touch Health Care Apparel-Bibs

Got any feeding issues/solutions with your
baby or child and want to share them with
us?


A Time For Every Season



Just as there is a time for each season
there is also an expected time for when
a baby will meet certain milestones in
their development.

Sometimes when you have a child with
Agenesis of the Corpus Callosum (or a
corpus callosum disorder) you may feel
like you are spending an eternity in one
particular season waiting and waiting,
hoping and praying while you’re waiting…
and WAITING for your baby/child to
learn something…something that so very
often comes easily and naturally right on
schedule, or perhaps only a month or so
late, with many babies/children.

Progress for your baby/child with their
developmental milestones can sometimes
come so slowly that it becomes difficult to
focus on anything else or see past it. All
you see around you are other babies your
baby’s age or even younger sitting up, your
friend’s babies crawling already, toddlers
running and talking their beautiful baby
words to their mommies. It can be so
emotionally painful.

For me with my own child, Matthew, who has
complete Agenesis of the Corpus Callosum,
there were very long periods of what felt
like an eternity of waiting for milestones…
waiting for progress. His learning period
crept along at the pace of a snail much of
the time but even so he kept on trying.

When he did finally make progress and
learned to do something we had worked and
worked on, the happiness and joy of his
accomplishment was all too often stolen away
with yet another mountain awaiting us right
around the corner.

The jumping for joy in celebration of
achieving a milestone (or even achieving a
very small and beautiful accomplishment) is
all too often brief…as your vision becomes
clouded and your focus is yet again shifted
back on another mountain rather than the
joyful ray of sunlight in all it’s
brilliant glory.

Your focus is so important and becomes a
monumental factor in terms of how you are
able to keep on keeping on despite those
mountains, those dark clouds, those emergency
room visits, those 911 rides in the ambulance,
those surgeries, those endless months of
waiting, those years of wondering and
waiting and all of those things that you
are facing in the particular season that
you are in right now with your own child.

What is it that you are focusing on?

Amidst all of the struggles and challenges that
your baby or child may be facing it can be all
too easy to become entangled in them and lose
sight of celebrating the glorious victories…So,
open those curtains, pull up the shades, let the
sun shine in in all it’s big, bright and beautiful
glory! And, for goodness sake do NOT put on
dark glasses and block out those incredibly,
gorgeous rays of sun…not even the smallest
little ray.

See (and look for) each and every precious and
tiny accomplishment that your baby/child makes
and allow yourself to celebrate, take joy in and
bask in all the beauty of it.

No matter what season you and your baby/child
are in at this particular time…always look for
the sun.

Look for the smallest ray of light and let it
shine through brightly! Take that one beautiful
ray of sunlight and put your focus on all it’s
lovely potential.

Where is your focus today?

On the mountains…..

Or the sun.


~When my child, Matthew, was a baby, a toddler
and very young pre-school child, the waiting
period for learning and achieving a goal was
painfully slow. As he got a little older he began
to learn something new more easily without such
long intervals of waiting between each new skill.~

Did You Know...



Some of you may already be aware and
some of you may not yet know that the
movie “Rainman” was inspired by Kim
Peek. Who is he?

Kim Peek is often referred to as the
Real Rainman. It is because of Kim
Peek that screenwriter, Barry Morrow,
(after meeting Kim) wrote a story and
that story turned into the screenplay
for the 1988 Oscar-winning movie,
Rainman, with Kim Peek being the
inspiration behind the character,
Raymond Babbitt, played by Dustin
Hoffman.

Kim Peek is a mega-savant and
one-of-a-kind. Kim was born with
Agenesis of the Corpus Callosum, as well
as no anterior commissure, damage to the
cerebellum and macrocephaly.

Some of you may have had the pleasure
of seeing Kim Peek and his father,
Fran, speak at a lecture or perhaps you
have even had the opportunity to meet them
personally. The father/son pair travel
from place-to-place on a regular basis
attending numerous speaking
engagements.

Kim Peek and his father, Fran Peek,
were keynote speakers at the 2008 DCC
Conference held by the National
Organization for Disorders
of the Corpus Callosum (NODCC).

I have been reading a book written by
Fran Peek, Kim’s father, called
The Real Rainman…Kim Peek and
it is truly a touching story.

You can find more information about
the book and read an excerpt from the
book here.

In the book Fran Peek includes what he
refers to as a “KimKwip” and they consist
of little things that his son, Kim Peek,
has said. They are gently sprinkled
throughout the pages.

My favorite “KimKwip” is found on
Page 12 and is about a little girl eating
an ice cream cone. It is so amusing and
adorable that I told my husband about it…
both of us will never forget it.

My husband just informed me that he
wants to read the book and asked if I
was finished with it yet…pretty impressive.
I don’t recall him wanting to read a book
I have chosen to read….until now.

The most beautiful and moving words that
represent Kim’s remarkable character that I
had the pleasure of reading are on Page 136
(one page from the end of the book) and it
nearly brought me to tears.

Below is a 5 part video series about
“The Real Rainman” Kim Peek:

#1 video:



#2 video:

In this video you will see Dr. Elliott H. Sherr, M.D., Ph.D., Kim Peek’s Neurologist.
Some of you have children with agenesis of the
corpus callosum or a corpus callosum disorder
who have been seen by Dr. Sherr at (UCSF)
University of California, San Francisco.




#3 video:



#4 video:

In this video you will see Dr. Lynn Paul of Caltech
(California Institute of Technology). Lynn Paul, Ph.D.
is also the founding President of the National
Organization for Disorders of the Corpus Callosum.




#5 video:





Fran Peek along with Lisa L. Hanson
wrote a new book about Fran’s son,
Kim Peek. It is called:

The Life and Message of the Real
Rainman-The Journey of a MegaSavant
.

Have you read either of the books written
by Fran Peek about his son, Kim, or have
you seen Kim and Fran Peek at a speaking
engagement or met them? I’d like to hear
all about it.


Update: Sadly, Kim Peek passed away suddenly
of a heart attack on December 19, 2009. His
soul lives in Heaven.

More information about Kim Peek can be
found here.

Laureate Learning



Laureate Learning
publishes computer software for children and adults
with special needs.

I first became aware of Laureate Learning software
when I was taking my child, Matthew, who has
complete Agenesis of the Corpus Callosum, to his
Speech-Language Pathologist for speech therapy
sessions.

Matthew is non-verbal with only a handful of words.
When Early Intervention was working with Matthew
in his early pre-school years it became very
apparent that, for Matthew, his best and most
effective method of communication (at that time)
would be through an augmentative communication
device.

Matthew has always liked to push a button and
see a toy light up or hear it say a message.
He is very auditory and he needs that voice
output coupled with a visual picture to be
able to communicate effectively and to express
himself both in terms of what he wants and
what he knows and understands.

The motivation factor is huge and a key factor
in figuring out so many wonderful ways to
teach and help create positive learning
tools for kids who have agenesis of the corpus
callosum or a corpus callosum disorder.

So, while Matthew’s Speech-Language Pathologist
was working with him during speech therapy
sessions to begin to learn how to use the
augmentative communication device we chose for
him, she set up her computer with some software
for Matthew to try (not knowing if he would like
it or even be able to use it). That is how we
first discovered Laureate Learning back when
Matthew was very young in about 1st grade. He
still uses Laureate Learning software today and
we both think it’s terrific!

The computer was also a big motivation for
my child, Matthew, to use the augmentative
communication device to make a request to
play “computer”. :)

At the time Matthew was using the computer
with a touch screen. His Speech-Language
Pathologist also worked with him to learn to
use a roller-ball type of mouse and he took to
that very well. Today Matthew is now able to
use a regular mouse by himself.

Laureate Learning offers a large variety of computer software for many abilities and skill levels. You can access Laureate Learning software by using a single switch, a touch screen, keyboard or a mouse.

Matthew’s favorites are:

First Words, First Words II & First Verbs

He also likes:

Nouns & Sounds

When you are looking at the website and exploring
the software products, be sure to click on the left
hand side of the screen where it says:

“View a short
VIDEO”

You will get to actually see a little demo of
the software in action and see how it works.
Please note that the Free CD Demo will give you
a much more hands-on experience and a far greater
idea of how the software works.

What do I like about Laureate Learning Systems?

Well, I especially like that Matthew likes it
and that it works for him.

I like that the computer software offers LOTS of
repetition. It gives you the ability to train
with a list of words and you can easily choose to
use only 2 or 4 or however many words you want
to use.

I like that you have a lot of control in terms
of how you configure the program so that you are
able to help your child learn at the most basic
beginning level with one picture on the screen
teaching your child that one picture at a time,
then advancing to two pictures such as
(horse and train) and it asks your child to
choose the horse. It will even keep track
of a child’s progress and provide short reports.

And…I like that Laureate Learning offers Laureate Family website and gives 50% discount on all their software to families. I like that a lot!

If this is something that interests you for your
own child I highly recommend that you request
their FREE CD Demo. This demo is a great opportunity to explore some of the software
Laureate offers for free with your child to get
an idea if your child will benefit from it.


Talk with your child’s Speech-Language Pathologist
about Laureate Learning software. Your child’s
Speech Therapist may already be familiar with
Laureate and may even be using it with clients.

If you do decide to make a purchase from Laureate
Learning I highly recommend purchasing the
“Sterling Editions” of software. They are an
upgraded software version with better graphics
and screen appearance. (I have used both the
classic versions and Sterling Editions and far
prefer the Sterling Editions).

Matthew’s beginning grade school teacher was so
excited when she got a copy of Creature Chorus
for her classroom and saw Matthew learn how to
use a mouse by himself and click on one of the
creatures then watch it move and make a silly
sound. I arrived at his classroom to pick him
up and his wonderful teacher (all smiles) had me
come in and was so excited to show me what
Matthew was doing. I was super thrilled!! :)


Be sure and request your Free CD Demo and try it
with your child. It just might be a pleasant
surprise and a brand new learning tool that
works for your child.

If you do decide to make a purchase from
Laureate Learning and you are the family of a
child with special needs or an adult with special
needs please make sure that you order from the Laureate Learning FAMILY website so you receive the 50% discount.

Oh, and I also like a few more things about
Laureate:


Damaged CDs Replaced!
If your CD gets damaged, we'll replace it free
of charge. Just contact us to arrange a
replacement. Please have your serial number
available.

Satisfaction Guaranteed!
If for any reason you are not fully satisfied
with your Laureate software, you may return
the program to us within 60 days for a prompt
credit or refund. HARDWARE IS NOT RETURNABLE.

Preview Policy
If you'd like to try a program before you
purchase it, we'll send you any Laureate
product free of charge for up to 30 days.
Just call us with a purchase order or credit
card number. If the product doesn't meet your
needs, send it back within 30 days and you can
try something else. HARDWARE IS NOT AVAILABLE
FOR PREVIEW.

Upgrade to a New Version
You can send in any Laureate program and upgrade
to a new version of THE SAME PROGRAM for just $60!
This includes upgrading to a new type of computer
(MS-DOS to Mac/Win CD) or to a new Sterling Edition.

You must return your old CD(s) or disk(s) along
with your order for the new version of the same
title. This Upgrade Policy cannot be combined
with any other offer.


It’s all in writing on their website.

I'd love to hear what you think about Laureate
software if you use it or decide to try it.

If you have discovered a teaching method that
helps your child learn please consider clicking
on "comments" and sharing (with all the readers)
what it is. What you have to offer may very well
be something that helps another child learn.

Sunshine



Yesterday when Matthew was eating his cereal at breakfast we were watching the public television station PBS Kids (like we always do).

At the end of "Clifford" a short music segment appeared and it caught the attention of both of us. In fact, Matthew stopped eating to stare at the TV for the entire song and so did Mom.

I instantly fell in love with this adorable little ditty called "Josephine Jellybean" she has a rhyming machine, it can make anything rhyme...sung by a guy with a guitar. And Matthew...well, he was mesmerized.

I was on a mission to find out how I could get this song or find out more so I called our local television station and was informed that the singer is from SteveSongs and he has his own website.

He also told me that Steve is a really nice guy too and is quick on his feet and able to improvise. I then questioned if Steve is a local artist but was told Steve is back East and that PBS put out a casting call for a singer to do fill-in segments between their television shows on PBS Kids and Steve got the job.

Well, let me tell you...Steve's got my attention and
my admiration too.

While this is not the original song that I spoke about it is a song worth hearing:




I like sunny days and someone who knows how to put a little sunshine in someone else's day...

My child, Matthew, likes...balls and computers and
he likes watching this video song so much that he's
signing "ball", singing his own "ah ya ya ya ya's"
and when it was over he signed "more" :)


You can find more information about SteveSongs, his DVD
and CDs at his website. You can also find other PBS Kids SteveSongs video clips on YouTube. The original song "Josephine Jellybean" is there but not uploaded from PBS Kids and a bit blurry.

ACC & Your Child At School-Part 1



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

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

It can be challenging!



Should they be placed in a mainstream class?

Should they attend a special education classroom?

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

Should they be placed in special education and be
mainstreamed?

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

And the list goes on and on…



There are so many choices to make.

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

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

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

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

Considerations For Educators Of Students With ACC:

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

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



ACC & Your Child At School-Part 2

Wait and See.......



For me, the ‘wait and see’ period was one
of the most difficult things to deal with
aside from the shock of receiving the
initial diagnosis of Agenesis of the
Corpus Callosum or a corpus callosum
disorder for your baby/child.

I remember the time after my child,
Matthew, was diagnosed with ACC as being
a very difficult time with all of the
testing going on and the lack of knowledge
about what we could expect for his future.
I think that is one of the most difficult
things in dealing with this condition--not
knowing the prognosis. It took me a very
long time to come to terms with that fact.
For me, the first year after his diagnosis
was the most difficult. I cried numerous
tears and went through many emotions.

For me, I wanted to know HOW and IF Agenesis
of the Corpus Callosum would affect my child,
Matthew. I wanted to know IF agenesis of
the corpus callosum did affect him, HOW it
would affect him. I wanted to know what I
could expect for my child. I had a million
questions.

Will he walk?
Will he talk?
Will he be in a wheelchair?
Will he…do this….will he do that?
Will he be mentally challenged…?
….the thoughts and concerns went on and on…

I asked and asked and…ASKED myself, and
his many doctors, those questions but I did
not like the answers because over and over
again it always came back to the same answer
which was…we can’t be certain yet and we
will have to...*nods already knowing*...
wait and see.

On top of it all, a wild whirlwind of
emotions threatened to rob me of the joy
that I had always dreamed of when you become
a mommy for the first time and begin that
glorious journey of motherhood and all that
it holds. Everything that I had envisioned
for what you expect when you have or adopt
a baby came to a screeching halt and I was
left to make sense of it, left to take my
baby to one doctor and specialist after
another, left to have one test after another
done, left to wait and endure the outcome of
each test result and left to try to do my best
to deal with it all, amidst tears.

There is such a huge and broad range of how
ACC and a corpus callosum disorder affects
each person diagnosed. There is no known and
definite prognosis available at this time.
Also, there is the possibility of other medical
conditions that may occur with ACC such as
chromosome anomalies, genetic syndromes,
metabolic disorders, etc.

I wanted a prognosis! I felt like having that
knowledge and understanding right then would
help me be able to deal with the tornado that
had ripped my world apart and was threatening
to steal my sanity and all that I had dreamed
of for what it would be like to raise a brand
new baby and child and for what I had
anticipated and envisioned for my child’s
future.

Now, fifteen years later, I know the not knowing
what to expect for Matthew’s future helped me
to keep doors open to all the wonderful
possibilities of what Matthew could learn
and accomplish. Back then though it was
torture not knowing!

I am still in a wait and see period…just not
like it was in the beginning when enduring
that time was so difficult because it was so
new, so unexplained. The wait and see period
for me now is much different and much easier.

I’ve waited, often times, a very long time
to see the new things that Matthew does and
he never ceases to amaze me with all the new
skills he keeps on learning. It’s so exciting
and so thrilling to see him learn something
new!! Like the time we were in the airport
in Honolulu, Hawaii waiting for our connecting
flight to Maui and, like a lightning bolt
appearing out of a sky full of sunshine, I
heard him SAY his very first word “buh bye” …a
word we had worked and worked on for an entire
year….and he really and finally SAID it!
“buh bye” in a brilliant baby talk voice came
again and again…”buh bye”…I grabbed my cell
phone and called my mom…so excited for someone
to hear what I was actually hearing…I got her
answering machine but I put the phone up by
Matthew’s mouth for him to say it again…”buh bye”.

The Wait and See period in the beginning can be
a most unpleasant valley filled with dark clouds
of endless grief and pain or waves of both…

BUT, just you ‘Wait and See’…..all the marvelous
things that your kids will do!