Back To School: ACC documents




Kids and school and ACC.

This is a repost because Fall is right around
the corner and that means:



Below you will find a list of ACC Educational
documents that are available.

I will continue to add any new ACC documents
that pertain to education to this page so
they are all located in one place and easy to
find.

If you are aware of a helpful document about
ACC and Education please let me know by
leaving a comment or sending me an E-mail
so that I can add it here.


ACC EDUCATIONAL INFO:

Educational Suggestions For Children With ACC


“Considerations For Educators Of Students With ACC”:

Mr. McCallum wrote this document. He is a teacher
who taught a child with ACC in his classroom. He
offers detailed and valuable information.

If you would like to receive a copy of
“Considerations For Educators Of Students With ACC”
sent to your e-mail please send me an E-Mail request.

In your e-mail it is helpful to know if you are
a parent or a teacher requesting the information.



The ABC's of ACC - printable version

ACC Reading and Comprehension

Handwriting Help

ACC: Social Skills & Challenges

Neuropsychological Evaluation

ACC & Me Children’s Book

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, however, they do accept donations of any amount.


ACC: Learning Colors - printable version

Marvelous Music:
A Musical Pathway To Learning For Kids Who Have ACC


Teaching Resources

National Organization for Disorders of the Corpus Callosum

"Facts about Agenesis of the Corpus Callosum and other Diagnoses"
(NODCC) Printable PDF Brochures:
(give one to your child's teacher)

Disorders of the Corpus Callosum Brochure: English

Spanish brochure
Chinese brochure
French brochure
German brochure
Japanese brochure
Korean brochure


The Girls

Now that school has started, all the girls are settling in a routine. By all the girls I mean me included!

Ellie loves school, although she refused to have a picture taken for her fist day. "It is NOT the first day of school! I have been to school before!" It did not matter how many times we explained it was the first day for that new school year, she still would have non of it.
At preschool she likes having Nina in her class, but I do hope that she makes other good friends too. Her best friends moved up to Kindergarten, so she was a little sad about that.
We are, however, homeschooling Kindergarten. I was not sure that would be a good idea for us, since we have very similar personalities and feared it would be bad for our relationship. But after a week (who knows what I will say in a month!) I am loving it, and I think she is too. Confirmation that children do learn better one-on-one.
Why are we doing this? because she wanted to, she wants to learn to read and she wants to learn math (for real!) but she is not ready to be going to school every day, all day. She already struggles with only 3 days for preschool.

Nina is doing very well at school. She even has a friend! And although terrified of the potty at school, she has had no accidents! So she is doing very well.
We finally took her to the eye doctor, and sure enough, she needs glasses. The funny thing is, she wants glasses and cannot wait to have them. I will make sure to post pictures as soon as we get them, which should be in a couple of weeks max.
This explains in part her fine motor skills and how much she struggles to color, trace, or some hand-eye coordination tasks. We are excited to see her improve in that area.
She is also tolerating her braces most of the day, and she asks for them sometimes! At school, she gets around in her walker for the most part, so I do hope that this encourages her to try to take some steps (You know, seeing all the other kids walking might make her want to do it too!)

Nichole is as sweet as ever. I do love having three mornings a week just with her. I really want to work on her speech, as she is really struggling with articulation right now. She can say a lot of things, words, and phrases. We just do not understand her. She is dropping some signs because she is saying the words, but we do not get the words many times. For example, "napkin," "blanket," and "pancake" sound exactly the same. Good luck figuring out which one she says.
Homeschooling Ellie is now making me look into some preschool programs for Nichole. I am working on putting some things together so we can really get her going.

I am thinking about teaching a dance class for all the homeschooling families. I was going to do that just with my girls, but I think it will be fun and that way we will really do it and not just think about it. Also, maybe this will be the beginning of "adaptive dance." Because Nina and Nichole will get to be a part of it, and I think they will both be great little ballerinas.


The Rhythem of the Day

It occured to me yesterday that our school year has gotten off to a smooth start.

That's not to say I haven't driven Joseph to school because we were running late (I have) or picked him up in the van because the babies and I needed a longer nap (I have) and that evenings weren't filled with back-to-school events (they have been). However, the weather has been picture-perfect and we have enjoyed lazy mornings and having the day free to do activities, without worrying about school pick up at noon.

I'm trying to get up, exercise and get the kids ready. So far, I have only gotten up at 5 twice but twice is better than zero. The dog really needs two walks and I try... but sometimes I just need a break from the baby in the ergo, the toddler climbing out of the stroller and the preschooler on her scooter... plus the dog pulling on his leash.

I took Camille and one of her friends to the zoo yesterday. We had a totally awesome day! The animals were out and showing off. The weather wasn't too hot. The new polar bear was a total blast. The girls were standing in front of the window and he would swim up, do a flip turn and swim away. It was amazing! Georgie even loved it. My parents got us the Gold Pass for Christmas and it was sooo worth it. We road the train, merry go round and even had free ice cream! Cami's friend requested "stinky monkeys, stinky elephants and clean giraffes." We saw stinky monkeys, stinky birds and big sheep. One sheep just looooved Georgie and followed us around.

When we got home, I had a short nap and we picked up Joseph. I am so glad we live in a nieghborhood where we can walk to school and see our school friends on a regular basis. Joseph has only one friend from Adventure Guides in his classroom but he gets to see them all the time because they live so close by. He is riding his scooter to school and I think we are going to work on bike riding soon. We need to take his training wheels off and get him going.

I need to post photos soon. It's been a week and a half of school and I still have the first day pics on my camera!

The People Who "Are"



It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

What Adoption Does Not Do

A good friend of mine recently sent me this link to the site Together For Adoption. It was written by Johny Carr, the national Director for Church Partnerships for Bethany Christian Services.

If you are adopting, have adopted, or know someone who has adopted, this is a great read.

In the adoption world, many times you will hear that a child's adoption, is much like our adoption into God's family. It is a good analogy, but we need to be careful with the theology behind. You can read the entire blog by clicking here.

This is an excerpt.


What Adoption Does Not Do

BY JOHNNY CARRPublished Aug 25, 2010

I love to tell our adoption story when I preach. During the sermon, I show pictures taken within the first few hours of James meeting us. One shows me and James laughing heartily together. Another shows him taking a nap with his new mom. One shows him and his new brother wrestling on the bed, while another has him walking hand-in-hand with his new older brother and sister. We had much the same experience with our daughter Xiaoli’s adoption.

However, what the pictures do not show is the hurt, confusion, and emotional stress our adopted children endured. James was four years old when we adopted him, and Xiaoli was six. They were both old enough to understand that something major was happening but, since they are deaf, they had no way to understand adoption.

Even for the children who do have language, how do you describe adoption? How do you fight the rumors that circulate in the orphanages about what happens to adopted children? How do you prepare them for a family who might not look like them, smell like them, act like them, or use the same language? Every adoption story is accompanied by a story of grief and loss.

When we are adopted into God’s family, the Holy Spirit takes up residence in us. This is where the one-to-one relationship breaks down. The Holy Spirit gives us the ability to know the mind of Christ through our salvation (1 Cor. 2:10-16). We are made into a new creation (2 Cor. 5:17). When children are adopted, they receive a new family and the prospect for a new life, but they are not a new creation.

Adoption does not heal a child’s past. People often say that my adopted children are “lucky” to have been adopted. I know what they are trying to communicate, but they are not grasping the totality of what my children have lived through.

Recently I read an article by Catherine Olian, writer and former producer of 60 Minutes. This is part of what she wrote about her daughter who was adopted from Ukraine:

Outside our home, she behaved herself and charmed most everyone. She did take exception when adults told her she was “lucky”. In her blossoming English she would unhesitatingly respond, “Did you lose your first brother and sister? Did you grow up cold and hungry? Did you live two lives, in two different countries? No? Then you must be the lucky one.” I’ve yet to see anyone disagree with her.

As this incredible wave of orphan care and adoption ministry continues to gain momentum in churches, we must make sure that we have a good theological understanding of adoption and a good practical understanding of adoption.

While I will continue to show the sweet pictures of our adoption journeys during my sermons, I will also take the time to educate families about the grief and loss that is always part of adoption. Healing can take place, and for many children, it starts with adoption…but it doesn’t end there—it never does.

Why I love Sam's Or, Why My Gaurdian Angel Drinks

This morning. I took Camille, Georgie and Cole to Sam's to pick up dinner for Kristen and co. (I had a lovely one made and the dog ate it. Seriously. But that's another story.)
We walked outside, with Cole in the sling and Georgie in the cart. Camille was walking. I said, "Hold onto the cart."

"I can't. My hands are full."

"Okay, then stay by the cart."

We walked outside and I realized my car was by the enterence. I turned the cart to go to the left.

I saw the big red car, the love child between a London double decker bus and an SUV. I stopped to go around it. Camille didn't realize I stopped and kept on walking.

That's when the car started moving.

I screamed, "Cami! Come here!" She was totally confused and kept trying to move but the car kept backing up. I couldn't move; if I let go of the cart, Georgie would crash into the car. If I didn't, I couldn't get to my daughter. I kept saying, "Camille! Come here" and the person in the car WAS NOT PAYING ATTENTION. Finally, someone leaned on their horn and the car stopped moving.

Camille is fine.

An employee ran out to us, asked us if we were okay and helped me to the car. He even loaded the car for me. It wasn't until we were on the road that I realized how bad it could have been.

He wasn't paying attention! He was trying to turn into a parking spot and that was more important than paying attention to what he was doing!

Thank God she's fine. And people wonder why we celebrate our Guardian Angels with beer. The poor blokes are probably drunks!

The Party

For Ellie's birthday party we went to the Minnesota Children's Museum. She had a blast! This was the first year she did not have a party with friends, and I don't think she minded it at all. It was the "funnest day of my life!" according to her. Ellie has alot of those days.
Adult, child ratio was 2:1. let me tell you, that is the way to go! Because sometimes 3 little girls really do need 6 adults to help them have fun!


Live, Love, Laugh!




"A good laugh is sunshine in a house."
-Anonymous



Bugg is a beautiful boy who, aside from having
agenesis of the corpus callosum, has the most
wonderful, happy-spirited laugh that echos
from deep within his soul and touches the hearts
of others with resounding joy.

The Bugg's *Special* Life is a blog that I fell in
love with from the first time I read it and I
always look forward to reading each new post
that Bugg's Mama shares. She celebrates life in
all it's spectacular moments and wraps it in a
package filled with love (and laughter) and
family.


Dear Bree, "Bugg's Mama"

I am so thankful to be able to get to know you
through e-mail exchanges and through all of
the uplifting, encouraging, inspiring words and
pictures that you share on The Bugg's *Special*
Life.

You are a blessing and you let your light shine so
brightly
into the lives and hearts of so many people.

Thank you for allowing me to share Bugg's video
here for other people to see. ♥

Love,
Sandie - Matthew's Mama


"Laugh as much as you breathe and love as long as
you live."
--Anonymous




"A smile starts on the lips, A grin spreads to the eyes,
A chuckle comes from the belly,
But a good laugh bursts forth from the soul,
Overflows, and bubbles all around."
-- Carolyn Birmingham




Take a stroll through the Bugg's Life...



P.S. Bree, your house is undoubtedly filled with
super fantastic sunshine!



"The most wasted of all days is one without
laughter."
--e.e. cummings


view Bugg's original video blog post

"Laughter is the sun that drives winter from
the human face."

-Victor Hugo


photos and video courtesy of Bugg's Mama

Great Sermon

If you have time to listen to a great sermon, then go ahead and click HERE.

My husband preached on August 15. He shared about our journey with adoption, and many of the feelings that we had to wrestle with as we walked that road. I have shared here in writing, but I recommend you here him share as he speaks.

If you have had any storms in your life, I highly recommend you listen to him, it is not just about adoption, this really is about life and the hard things we go through.

Just look for August 15 by Andy Stumbo.

My Princess Is 5!

My big girl is 5 years old! Five years ago, Ellie turned me into a mother; a job I always wanted to have. She has filled my life with smiles, hugs, kisses and silliness.

Let me tell you a little bit about the day she was born.

We arrived at the hospital around 5 am. I was not given the okay to push until 7:30 pm. It was long and painful. And in our little town, an epidural is not an option, you just deal with the pain. For all those hours, Ellie had her little foot jabbed against my ribs. I would push it down and in no time, she was digging it in again. Not a nice thing to do to mommy when she is trying to bring you into the world!

I pushed for 2 1/2 hours. And her little foot was still pushing on my ribs. Outside the delivery room was my mom, dad, little sister, aunt, cousin, and 2 friends of the family. They say they could hear me screaming and that it was taking a long time. I do not remember any of that, except her little foot.

One of the nurses said to me, "Push like you mean it!"

What? Don't you mess with me right now!

"What do you think I am doing!" I screamed right at her.

She smiled, "Now, that, was your best push." She added on, "Let's make her angry so she can push that baby out."

Ellie did not crown, she did not come body part by body part. She just finally got her little foot against my rib just the right way, and she pushed herself all the way out! One moment she was all in, and the next one she was ALL out! You should have seen the doctor's face as he had to catch the flying baby!

Then they laid her on my chest as I cried, "My baby, my baby, my baby." Ellie looked up straight at me, and just like that, I felt a love I had never felt before.

Happy birthday my sweet Ellie. I am so proud of you. You are a dream come true. You help me remember what it is like to play, and dance, and accept others. I have so much to teach you, yet you have taught me so much more. I love you with all my heart, and foot, and belly, and hands!

First day of school

Pictures to come.

Joseph started first grade today! He was so happy to go. He knows his teacher, as she was one of the kindergarden teachers last year. He only has one of his buddies from Adventure Guides in his class. I am not sure if they split the boys up by accident or on purpose! He seems very confident and in control this year. I hope it stays that way.

Getting up and off today was easy-peasy. I packed his lunch the night before and we were all up and at'em with no problems. I doubt everyday will be like this!

It was nice not having to plan my day around 11:40 pick up. We were all more relaxed and Georgie got a good nap in. A friend and I took our kids to Jumpin Jax and lunch and it was nice and relaxing.

As a surprise, my mother came in town for the week to visit the kids... and for my birthday on Monday. :) We're going shoe shopping tomorrow, since Higgins ATE one of her shoes!, and Joseph's TKD class.

The Goodness of Humanity

Back in May, we attened the annual March for Babies. As we were getting our shirts, a friend, M, who has a son Georgie's age, told me about a former co-worker of hers. Her co worker had recently had a son at 24 weeks and was then in the NICU where Georgie and her boy were.

24 weeks are at high risk of devloping NEC, a problem with their bowels. It can be fatal.

This baby devloped NEC and had to have surgery. The best thing for his senstive tummy was breastmilk but his mother, like many mother's who had children in the NICU long term, had problems pumping. Her baby really needed the breastmilk so a fellow NICU mom stepped up and donated her milk.

That other NICU mom? Her baby had passed away.

In the middle of some horrible grief, this mom thought of others and willingly gave her milk to Baby M. The breastmilk helped him grow and become strong enough to go home. My friend M is his "back up" donor.

All these women came together to give liquid gold to a baby who really and truly did need breastmilk. How wonderful, how loving.

And the best part? It made the front page of the news this morning!

Music Video

Yes, I am posting a music video. You might even say, "Again? More music videos?" Yes, more!

But, this is too cute to pass, you have to watch it. A seven year old boy wrote this song for his little sister. I admit, I got a little teary eyed.

What is the impact of children with Down syndrome on siblings? Well, just see the heart of this seven year old boy. Phenomenal!

ACC and Moms-To-Be #5 Story



This is the fifth story about ACC and Moms-To-Be.

Part of this story began as a letter that was originally
written back in June and given to me to pass on to a
Mom-To-Be who I was e-mailing with who had just
received the news that her baby has ACC. I asked
Katherine if she would consider sharing her story
here on the blog in the hopes that it could reach out
to even more Moms-To-Be. I recall Katherine's e-mail
response to me was that she immediately thought "YES!"

What you will read, that began as a letter to one
Mom-To-Be, turned into additional heartfelt feelings
and became Katherine's ACC and Moms-To-Be Story.

It is a privilege to be able to post her story here for you
to read. Thank you very much, Katherine, for sharing
a very personal part of your pregnancy and the emotions
that you endured with many more Moms-(and-Dads)-to-be.



Written by Katherine:

"I remember when I was getting a routine ultrasound,
and the docs noticed slightly enlarged ventricles
on our baby's brain, I had no idea the journey I
was embarking on. We went a few weeks just
monitoring the ventricles, having no idea I was
going to have a child with a disability! Things
like this just didn't happen to people like me.
How selfish and unaware I was to think that.
At that point, the "worse case scenario" was
possible hydrocephalus where the baby might need
a shunt after birth. Well, just to be safe, we
were sent for a fetal MRI, and everything changed.
Our docs went from being so positive and encouraging,
to total devastation and talks of termination. The
same people in the offices who were so happy at
every weigh in, giving our other daughter lollipops
and framing ultrasound pictures could barely look
me in the eye. Our little girl looked so perfect
on ultrasound - normal brain size, normal body,
all organs intact and functioning normally, normal
amnio, normal fetal EKG - was this diagnosis that
bad that more than 50% of people terminate? The
only intelligent questions we could think to ask
were, "what are the chances she could be normal."
And what we quickly learned was there is no clear
answer - anything they said was contradicted by
something we would read online. What one doctor
said would be contradicted by what another said.
It seemed like nobody really knew anything - and
playing the odds was not recommended. The
conversation always circled around to termination.
I had a doctor rub my back while I was sobbing in
his office and he said, "don't worry, you can have
more children and we will just put this behind you."

At 31 weeks pregnant, I turned to the ACC list serv
as part of my research. I was devouring information
so that I could make an intelligent "decision" on
whether to terminate or not. I would stay up all
night reading and reading, then report my findings
back to my family. We would argue, cry, discuss and
debate everything I read. We would change positions
in a single conversation - it was tortuous! The
list serve was the only place where I was able to
speak with real parents, real children and see actual
kids with ACC. I wanted to see pics of kids with
ACC - that might sound superficial but I had no idea
what to expect! One Mom sent me pics of her 6 week
old son - and I passed it to my whole family - and I
kept saying to everyone, "look at how normal this kid
looks - how can he be missing this part of his brain?"
I remember one of my first posts was asking if our
daughter would cry like a normal baby, would she be
in the normal nursery, would we be able to hold her?
The answers I received and support changed my life
forever - and in a way, helped me to realize there
was no "decision" to make. ACC is not a diagnosis
worthy of termination. Just because Maggie's life
was going to be different or difficult, was not
grounds to end it.

I am a Catholic woman who never would have thought
I would consider terminating a pregnancy but that is
the situation I found myself in - it was the darkest
moment of my life and one in which I believe God
stretched out His hand and lifted me from. I prayed
daily that God would take this decision from me -
that if she was to have life, that He give it to her.
And if she was not to be of this earth, that He take
her now. Well, after all of my research we just
could not go through with termination and decided to
stop talking about it. We were having a baby and
that was the end of it!

Maggie's birth was a beautiful experience, and she
cried a gorgeous normal infant cry. She had a head
ultrasound after birth which showed no hydrocephalus
She breast fed like a champ and went home just like a
typical infant! She hit all her first year milestones,
some delayed and some early.

Maggie is the light of our lives. She is our second
daughter, and I don't know how I would ever explain
to our older daughter that we terminated her sister
because she was not "perfect." We live in a society
where we want to fix everything - and if it is not
the way we want/expect, we have to do whatever it
takes to get back on track. Well, having a child
with ACC changed the course of my life - and I liked
my life before! I did not want to change course!
But thank God we did - because this has been the
most amazing, beautiful and inspirational journey
of my life. That is not to say our lives are not
filled with worry and stress at times. ACC is a
"wait and see" diagnosis and we know that Maggie's
development can change at any time - she could
develop seizures, learning disabilities, etc. We
just take life one step at a time and celebrate
everything she can do - which right now is everything
and anything she puts her little mind to! Her
neurologist said to us at her one year check-up,
"there is no reason to think her functioning will
be limited in any way. It appears at this time
that she will lead a typical life."

It is my hope that more doctors will be comfortable
discussing positive stories about ACC. I believe
they discuss termination and worst case scenario
because they do not know a lot about it and we fear
the unknown, and they are nervous about litigation
since ACC is wait and see. If they do not counsel
termination, and you have a more severe case, you
could then sue them for wrongful birth or wrongful
life. The period of time from diagnosis prenatally
and birth should be spent preparing and getting used
to your new reality - mourning what you had previously
hoped and dreamed and developing new dreams, making
new expectations. It should not be spent making a
"decision."

Education and research will help to shed much needed
light on ACC so that other parents are not faced with
these types of decisions - so that they do not terminate
a child like Maggie. When I think that her life might
not have been, I get chills. I mean who I am to have
prevented her life to never be? I am her mother and
I could have taken her life? I was put here to give
her life! I could not imagine this world without her."



1 year old Maggie and her big sister


There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.


I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Love To Read

I have always loved reading. As a little girl I read as many books as I could and my goal was to be able to read the big books. I watched "Tom Sawyer" the cartoon and I knew we had the book on our shelf. Once in a while I would pick up the book and try to read as many words as I could.

Once I could read, I devoured many of the classics, like Heidi, Little Women, and of course Tom Sawyer.

Little Women and Tom Sawyer were my favorite books. Maybe my "comfort" books. I read every version I could find in English and Spanish. I have not read Tom Sawyer for a while, but four months ago I found another version of Little Women (free on Kindle!) and I had to read it again.

I am always in search for good books to read.

I just finished "You Matter More Than You Think," by Leslie Parrot. Great book, I might have to blog about it.

I am currently reading "Hello, I Love You" by Ted Kluck. This one is turning out to be quite therapeutic as he shares his journey bringing home his two sons from Ukraine.

But I am out of "fun" book ideas.

Any suggestions? What do you like to read?

Stories2Learn - Social Stories



Did you watch the video?

That's all it took to spark my interest and within a
couple minutes I was enthusiastically exploring more
about the Stories2Learn application "app" to make social
stories for my child, Matthew, who has Agenesis of the
Corpus Callosum.

"Create personalized stories using photos, text and
audio messages."


"Stories2Learn works with iPhone, iPod Touch or iPad."


Price: $13.99

"Stories2Learn
was developed by an educational team
consisting of teachers, a speech therapist, and a
school psychologist specializing in educating
individuals with communication challenges."

For about the cost of one book in the bookstore you can
have an endless library of personalized possibilities
to create for your child or student that meet their very
specific needs to help with: social skills stories, daily
schedules, teachable stories and so much more...that
enable photos, your own text and audio messages that you
personally record on each page.

Stories2Learn Tutorial movie download

Note: video tutorial takes several minutes to download





You write the story from the first personalized
page to the last. And, you can easily edit any page
any time...from pictures, to text and recorded
messages. You can also add more pages or delete
pages in the story. Plus you can keep on adding
new stories.





When you click on "My Stories" you will go to a screen
that says "View Stories". There you will find a list of
all of the stories you made. You can easily view a story by
clicking on the picture icon and story name.




After reading reviews about Stories2Learn and watching
the video of Leo's social story I went directly to itunes
and purchased Stories2Learn so I can use it with my child,
Matthew, who has complete Agenesis of the Corpus Callosum.

It wasn't too difficult to figure out. Within a fairly
short time after buying it I had my first personalized
story about our family beach trips up and running on
Matthew's iPod Touch for him to watch and listen to.

The story page has touchable arrows on each side of the
page that give the person an opportunity to go back to
view the previous page in the story and listen to it again
or go forward to see and hear the next page.

here's two of the 14 pages I made for Matthew:



Very quickly Matthew learned how to flip through the
pages and tap the picture to make it 'talk'.



He likes it.

And he's already watched "Matthew Goes to the Beach"
several times today.

The first time I recorded a story on Matthew's iPod
Touch, using the external microphone that came with
the iPod, it was very quiet and could barely be heard.
I was disappointed and thought that was the end of that.
But then I gave it another try and held the external
mic VERY close to my mouth while speaking the words
for each page. Worked like a charm and made a big
difference in the sound volume. Plus, I put Matthew's
iPod Touch inside his iMainGo2 speaker case so it
gets an even bigger boost of volume and works great.

Stories2Learn comes preloaded with one social story
that includes two kids playing a game and taking turns.



Many kids who have Agenesis of the Corpus Callosum
learn best through A LOT of repetition and this "app"
allows a person to see and touch the picture over and
over to hear the audio message as many times as they
want and need to hear it out loud--something my own
child did immediately upon trying out his new story.

Stories2Learn has opened up endless possbilities for
me in terms of helping teach Matthew specific skills
that he is working on learning and it gives me the
ability to completely personalize the entire story with
pictures, text on each page and we can record messages
with my voice, dad's voice, a friend's voice or a family
member's voice to turn the story into a meaningful
forwards, backwards, say it again...(and again)...
teachable video-like book that is lots of fun.

I can foresee using Stories2Learn as a tool to help
teach my child independent skills like "using the potty",
"brushing teeth" and.....a whole lot more!!

Thank you very much Look2Learn.com, the creator of
Stories2Learn, for creating a fantastically fun
teaching tool.

I'm excited about it and I can't wait to personalize
more learning stories for Matthew that meet his
specific needs.

I'm also seriously considering the idea of upgrading
to an iPad for Matthew?!?

Stories2Learn is a terrific on-the-go library of
learning fun for use with the iPod Touch, iPhone or iPad.

So what do you think?

Does it spark your interest and creativity for use
with your child or a student to help with social
skills stories, teachable stories, daily schedules
or anything else?


Many kids who have agenesis of the corpus callosum
have challenges with social skills. Receiving
social skills training in school or in the community
from a trained professional and the use of social stories
can be valuable tools to help a person who has ACC
learn and practice social skills.

Video about ACC and Social Skills

One year

Dear ColeBear,
It has been one year since we found out you were coming. It was a hot August day when I realized that maybe my period was a little late and maybe the "middle age spread" wasn't due to too many cheese curds in Wisconsin or, well, middle age.

We had talked about a fourth child. We had wanted a fourth child. We were going to wait until Georgie was two.

But you came on your own time, On God's time and it was, of course, perfect.

We were sacred for you. We were worried that you wouldn't make it until your lungs were mature enough to withstand the outside world. My anxiety was never caused by you. It was for you- anxiety that I would fail you, would fail to keep you safe until you were mature enough to greet us. Seeing your heartbeat at six weeks wasn't enough. Finding you were a healthy, growing boy wasn't enough. We wanted the best start for you, a healthy start.

And by the grace of God, you had it.

To this day, I can still remember the elation I had at reaching 36, then 37 and finally, on Easter morning, 38 weeks. I still remember being surprised but thrilled when I was in labor- FULL TERM! I remember our doula meeting me at the house, laboring with me as the sun poured through the window. We walked along the walking trail, talking, carrying Georgie and listening to the dogs bark. Then, at just the right time, we went to the hospital. In a whirl, you were born.

I can still feel the earth-drenched warmth as they pulled you from me and I said, "He's MINE!" and they handed you to me. You smelled of birth, of the earth after a spring rain, of new baby. You were MINE- healthy, and crying and warm.

Oh ColeBear. I gave you what I wanted most for you, a healthy start. But YOU! You gave us so much more! You are our fourth baby, another beloved son. You are sweetness, warmth, light all in one little package.

We wanted you, Cole Robert. Never forget that, never doubt that. Yes, you came on your own time. you came on your own plan. You did things your way. If I could go back to the night you were made, would I change anything? NO! Absolutely, positivity, one hundred per cent no. I want you. I need you. You make this family whole.

You taught us so much. You taught us, reminded us, to rejoice in God, to proclaim the greatness of the Lord even when we don't understand the Plan. You reminded us to be patient, to wait, that all good things would come in time. You reminded me that there is a purpose bigger than all of us. You have a reason to be here, Cole.


I wish I could spend all my time kissing you, singing your silly song and staring at you. I marvel everyday how much this family had changed in a year and how good things became.
You are a darling baby, a sweet, patient little brother and a joy to be around. I cannot wait to see what the future holds for you and for us, with you in it.
Just one thing, ColeBear. Remember my meditation, what carried me through the fear, the doubt, the anxiety of your pregnancy. Remember "my soul proclaims the greatness of the Lord and my spirit exalts in God my Saviour" and always let your soul proclaim the greatness of God, who knows better than us and in His perfect timing, gave us to you.
Love,
Mommy

If You Want Me To

I am looking for information on a surgery for Nina called PERCS. I was trying to find blogs where I could see the before and after difference in children that have this surgery.

I cam across a blog that was playing a song. It caught my ear, and in light of my previous post, I thought it was timely.

If You Want Me To by Jenny Owen

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

ya oh oh no

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley


If You want me to

NODCC Conference Thoughts



This year the NODCC held their annual Conference
in Santa Clara, California at the Marriott Hotel
on July 31, 2010 to August 1, 2010.

If you haven't been to a Conference before, it's
always fun and exciting to hear all about the
Conference from other people who attended so that
you can get a better idea for what goes on.

And for those of you who have a baby or toddler with
Agenesis of the Corpus Callosum who have not been
to a Conference who have some fear or apprehension
about what to expect at a first-time Conference I
think you will enjoy getting a glimpse of the Conference
through the eyes of Jessi, the Mom of one-year-old
Samuel, who graciously gave permission for me to share
her viewpoint of the Conference here for you to read.
♥ thank you very much, Jessi ♥



Samuel's Mom wrote:


"We just arrived home from our trip to California,
and what a trip it was! We really had so many
amazing experiences, starting with our time at the
NODCC Conference (National Organization for Disorders
of the Corpus Callosum).

I am not sure what I was expecting going into the
conference, but it was certainly better than whatever
my expectations were, and it was just what I needed.
There were families from all over the world (we met a
nice woman from Iceland and a couple from Australia).
There were children of all ages that had a disorder
of the corpus callosum. Some had complete agenesis
like Samuel, meaning no corpus callosum formed, and
others had partial agenesis or hypoplasia. There were
lectures that focused on educational strategies,
speech and language development, sharing the diagnosis
with your child, social development, current research,
and much more! I really enjoyed discussion groups for
parents, as I came away feeling understood, hopeful,
and more prepared for issues that may come down the
road. Getting to know other families was a big highlight
for me. Talking to other parents with the same issues
and concerns, and also getting suggestions was so
helpful. I really believe we made lasting friendships,
which will be so wonderful for Samuel as he grows and
for us as well.

Coming to this conference made me more aware of how I
had been thinking about Samuel... desperately hoping
that he would reach every milestone "on time" and
basically still be "normal" despite his diagnosis.
Meeting so many people with special needs kids and
their openness and positive attitude, made me realize
that I do Samuel a disservice by comparing to the
"normal". The truth is, his brain is different! I can
say that now without feeling sad or overwhelmed. I need
to be honest with myself and others about his ACC,
because Samuel has his very own timeline for development,
and he has special needs to help him achieve his goals.
He may very well go on to do "normal" things in his life,
but if he does, it won't be without a lot of work and
persistence on his part, and that should never go
unnoticed!

I was told over and over at the conference to never
put limitations on kids with ACC. Push them to succeed!
They can do much more than we think possible. It may
take them longer, but they will get there. At the same
time, understand that there will be things that may be
more difficult for them. When they have worked to their
ability with one thing, move on to something else where
they will have success! I know that is very broad, but
it encouraged me that Samuel will have great victories
in his life (I knew that already, but it was cool to
hear real life success stories and meet adults living
with ACC!).

So my main take-away was really two things, a mix of
realism and hope... first to let go of "normal" by
accepting and acknowledging that Samuel's brain is
functioning differently. Secondly, although that is true,
his brain is amazing and is capable of learning and
growing and re-routing pathways to help him make
connections...so there is truly nothing impossible for
Samuel! Wahoo. :)

I just want to recount a favorite memory of mine from
the weekend. It was Saturday evening and after dinner
there was a dance with a DJ. As soon as the music started,
kids starting pouring onto the dance floor. There were
little ones, some even using walkers or wheelchairs, and
there were teenagers and young adults. Everyone was just
having a blast. I had a flood of happiness watching these
children have the time of their life. I could just imagine
Samuel one day dancing with his conference buddies years
from now. I came into the conference fearing that it would
feel like doom and gloom, and instead I came away so
touched to see other children just having a great time
being kids. I will cherish that memory for always.

I don't have many pictures to show for the conference,
as we were too busy! But here are a few...

Samuel getting really close to standing on his own
(which he later did for 3 whole seconds!)


Samuel's first taste of Ghirardelli ice cream...
don't worry, it was only a taste! :)"


And if you're wondering, like I was, if Samuel
liked his ice cream...here's the video answer.

See more of Jessi's pictures from the
Conference and also some family pictures in
San Francisco after the Conference.

"I came into the conference fearing that it would
feel like doom and gloom, and instead I came away
so touched to see other children just having a great
time being kids."
reprinted with permission The Von Banks

Did you attend the Conference?

National Organization for Disorders of the Corpus Callosum

2010 Conference Schedule
Note: Conference Schedule is found on pages 22-25 at link above. Page may take a few minutes to load.

Jesus Draw Me, Ever Nearer

Here is the song I posted about last night.

I often find myself wishing that there were no hardships in my life. However, life happens, and we do live in a broken world. May this song be an encouragement to you, as you face the different storms of life.

Draw Me...Ever Nearer

"Jesus Draw me, Ever Nearer"

Jesus draw me ever nearer
As I labour through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.

Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.

This blog could be a series of posts about how wonderful our family life is, or of how well I can handle having three little girls under the age of five. It could be full of wonderful moments and great photos that show you how put together our little family is. I could paint you a word picture of us as the poster family in a Pastor's magazine.

The truth is, we are far from having it all together. We are broken people, and we do the best we can loving God through our brokenness. We struggle in life, we mess up, we even dare cry and shout out to God, "You have abandoned me! You don't even care!" Once those words are out of our mouths, we realize how needy we really are.

Last May I posted about Grief Is Not a Speed Sport. It was as honest a post as I could write at the time. But let me back up a little. On July 28th of 2009 we committed to adopt Nina, and on that day, we began a journey that we knew would be emotionally draining. Except now it is not just something that we know, it is something that we have lived, it is something that we are still experiencing.

I have shared as much as I can share about our adoption journey. I have shared about when we first met Nina, and of how falling in love with her has been a journey. Some things I am not ready to share yet, because I am still working through those feelings.

Adoption is hard, it is very hard. The process begins as soon as you start getting paper ready. This process is emotionally exhausting. Then you travel to a different country, already emotionally exhausted. For me, at the end of my time in Ukraine, I was an emotional mess. Just ask the many eye witnesses at the different airports as we made our way back home. Arriving home did not "wipe away my tears" so that we could start anew, I was already too spent to give anything to my girls. I was too tired to love Nina.

God began healing in me, in my heart, when He sent that Russian speaking lady to our small hospital room. It was the day I gave "birth" to Nina. It was the day I first loved her. She had already been with us for almost exactly four months.

A friend said to me, "Ellen, the fact that you were called to adopt Nina does not mean that it is any easier for you than it would be for me. It is going to be hard, the difference is, you were willing to obey, even though it is difficult."

Throw in there some pretty significant issues with my family of origin, and you have a recipe for an emotionally unhealthy woman. Hello, my name is Ellen, and I am needy. If I don't do something about this, I am going to loose it.

In light of the emotional state of our family, Andy asked for a Sabbatical. We had that time from the end of June till last week. Throw in there some pretty sweet counseling, family time (that we really should have had when Nina and I got back from Ukraine), time away from home, and some time to sit on God's lap and you have a recovering me. Hello, my name is Ellen, and I am a recovering...human being.

We have learned much about taking care of our hearts. Of looking at what is inside and actually dealing with it, working through it. Allowing ourselves to feel, to let go. In reality, it is not just about the journey of adoption, it is the journey of life.

Today at church we sang, "Jesus Draw Me, Ever Nearer." A perfect song as I reflect back over the last year. A perfect song as I can see the treasures that have been gathered through the trial. Treasures that have made me love God even more, and hopefully made me more to His likeness. In light of that, I am thankful for the storm, and I am thankful for the journey.


(And if you need to, go ahead, read again the lyrics of "Jesus Draw Me, Ever Nearer." We all have storms in our life)

(sub)urban decay

About a month ago, we had Termix in to get rid of some mice. (eeeeeek!) He asked if we had water damage. I wonder why he thought that?



(The cieling fan is new. We had a long, gold light fixture there. Our whole kitchen was very 1990, which was cool... in 1990.)

Today Adam peeled down the last of the wallpaper. The curtains are sitting in our garage- why, I don't know. They have faded from the deep red/burgandy you can see here to a purple. They were also screwed into the walls and have never been taken down and washed. Ew. Just ew. Even I wash curtains once a year!

We have backsplash tiles sitting on the counters and paint samples on the walls. I have 20 pounds of spackle on my kitchen table and dust everywhere. I give up- at least I have a reason for my kitchen to be a wreck! Think I can get out of cooking dinner?

Binkie Thief


Georgie: Ooooohhhh... lookie! I have a binky!
Cole: Binky?!



Georgie: Baby Brother, do you need the binky?


TAKE THE BINKIE DANG IT!


Georgie: Fine, I'll take the binkie back. Higgins, do you want the binkie?
Cole: Um, what?

CHEESE!

(Yes, I know, I should have totally stopped the binkie sharing. But it was so funny! And now they will have tooth decay or get sick or something. But it was soooo funny!)

It's TWINS!

Or totally not.

Tonight Adam and I took the kids to the neighborhood pool to swim and burn off energy. (Them, not us. We have no energy!) We had all four kids in the pool and were chatting with another couple. The big kids were being AWESOME; jumping off the side, swimming accross the pool. Camille can even do a proper front crawl for a few yards! And both can float!

There was another couple there, swimming with their grandkids. The kids looked about Camille and Joseph's ages; maybe a touch younger.

At one point, the grandmother looked over at me and said, "Wow! They are close in age!" I nodded. "Are they twins?"

I looked at her and said, "Which ones?" Because, um, I think they all CLEARLY look different ages. And heights. And abilites.

She point and Georgie and...

are you ready for this?

COLE!

I mean, OF COURSE a 20 month old wearing 3T clothes and eight teeth in his head, sitting at the side of the pool and jumping in could TOTALLY be twins with the four month old, toothless, little man who can hardly sit up alone are twins! How did ya guess?!

On some random plane, I can see how these two:




could be twins if you figure some boy/girl twins differ greatly in height, clothing size and you didn't hear them talking much.

But these two?



are so totally not twins.

When I said, "No, they are sixteen months apart," she nearly screeched, "SIXTEEN MONTHS!"

They left shortly after, thankfully.

When I asked our friend, "What was with that?" she said, "I know! They are clearly NOT TWINS and LOTS of people have babies sixteen months apart!"

I guess it's better than being told I am busy or have my hands full every single place I go. A change of pace is always good, right?

Inclusion and Friendship for People With Down Syndrome

I came across this essay written by a high school student. It is an essay on friendship, and about the things that really matter in life, even to a teenager.

I am aware that some people might not see school inclusion as a good idea. Some are fearful that those with intellectual disabilities might hold the rest of the class back. Unfortunately there are still some who think that children with intellectual disabilities need to be confined to the special education classroom. However, I know that Nichole has much to offer her typical peers. So enjoy this beautiful essay written by Kaitlyn Smith.

Kaitlyn Smith
Period 5, 11/30/09
Final

My Best Friend… My Hero

Staring up at the huge hill of stairs flooded with people slowly making there way to the top, I was frozen still. It was the first day of my freshmen year of high school, and I spent all morning making sure my outfit was pretty enough, my make up was blended enough and my hair was straight enough. I walked into school with my head held high, but my mind scattered in a million different directions. I had no idea who I was. All that I cared about was trying to fit in and look stylish. Looking back at freshmen year I am very ashamed of the person I was, but proud of the person I have become. My life has changed so much since freshmen year, and it is all thanks to one special person… my best friend.

Our friendship started at the beginning of sophomore year in gym class. When the teacher paired me up to work with her all year, I was excited because it was an opportunity for me to get to know her better. It didn’t take long before we became incredible friends. We sit together at lunch everyday, call each other on the phone, make each other cards, go to the movies, go shopping and spend every spare second we can with each other. Although this seems like a relationship that any teenage girl has with her best friend, it’s truly different. My best friend has changed my life.

Right from the moment I met her, I knew my best friend was a blessing. I needed someone in my life that was going to change my perspective and give me a different outlook. She did just that. Walking down the hallway with her one afternoon on our way to lunch, we passed a group of people that looked at her and laughed. My best friend looked right at them, kept a smile on her face and ignored it. After time and time again this same scenario played out exactly like the first, I finally understood. She doesn’t care what people think of her. After seeing how happy she is just being herself, I realized something that changed my life. I don’t need stylish outfits and perfect hair; I can be myself and be perfectly happy, just like my best friend. When I wake up in the morning, I no longer have to stress about the battle of finding a perfect outfit. I know that no matter what I wear my best friend will treat me just the same.

After my best friend made me recognize that who I am is acceptable, I stopped worrying about what people thought of me. I’ve heard repeatedly from several different people, “you’re definitely not the normal teenager,” but what is normal? Getting drunk every weekend, having every other word out of my mouth be a cuss word, dating ten guys a month, and experimenting with drugs? Well than I am completely fine with being different, and my best friend taught me that.

After being able to put all the pointless high school drama aside, I have been able to have so much fun! Instead of worrying about getting a date to homecoming, I went with my best friend. We got ready together with a big group of friends, and then all went to the dance. We danced all night together and had such an amazing time. For once I could enjoy homecoming without worrying about what my date was thinking, and if my hair was staying in place.

My best friend has changed my life more than words can explain. She is my hero. I have gained a new perspective on life, and have learned that you just have to be yourself. Some people look at my best friend and think that she’s different, but she’s not… she’s just like you and me. The only difference between my best friend, Kathleen and me is that she has Down Syndrome, but that is what makes her my hero. As Steve Guttenburg once said “If you’re an underdog, mentally disabled, physically disabled, if you don’t fit in, if you’re not as pretty as the others, you can still be a hero” and Kathleen is mine.