Nina Gets her AFO's

Today we got Nina's AFO's (aka leg braces.) I had no idea what they were going to look like, if you remember, when I last posted about the AFO's, I had no idea which "kind" we were going to get. I really like these, as it allows for more movement of her leg and foot while keeping her heel "down."

Nina was still trying to walk on her toes, which is understandable as this is the only way she knows to do it! Both, the AFO guy (sorry, don;t know the official title!) and our physical therapist said it will take a little bit for Nina to get used to this.

She does like them though, even if she dislikes the feeling of them. When she first got down on the floor to stand, she was amazed at how her balanced had suddenly changed. Even though her heels do not yet come all the way down, she can no longer just stand on her toes, which means that she can balance better, she liked that! She even was trying to let go and stand on her own!

Walking also changed for her. She has to learn a new posture, as the one she has always had, does not work with your heels on the ground. It will be a process, but we are getting there and she will someday walk. How exciting for her! Once she gets botox, her braces will help her even more!



Our camera is out of batteries. I will later post pictures of Nina with and without her AFO's. You will see what a difference they make!

37+3 and still waiting :)

After having a fabulous weekend, I'm pretty tired today. Not more tired than last week but tired. I'm sleeping okay at night, maybe waking once to use the bathroom, but I am still exhausted when 6:00 am rolls around. Today was another swimming day and I didn't go. I just really needed to sleep. It's not that I can't swim but the early hour has finally gotten to me. I think I'm done getting up at 5:15 am to swim for now.

Sometimes I wonder why the heck I'm so sleepy. I've been pg for nearly two years straight, so I guess I forget the toll it takes on a woman's body. I mean HELLO! I've got a 5-6 pound baby kicking away in there, 40 extra pounds and three other active kids. Why shouldn't I be tired?!

Today was a pretty typical day. I don't know if I am awed or scared by the amount of work I get done before 8:15, when we leave to walk for school. Not only am I showered, dressed, hair done (well, dried) and make up on, but I've made breakfast for the kids, thrown in a load of laundry, cleaned up b'fast and the kitchen and today I vacuumed G's room. After walking 1/4 mile to school and back, I finished the diapers, made and cleaned up snack, played with the two at home, read some stories and made chocolate granola bars.

After picking up Joseph (again, another 1/4 mile there and back), we had lunch, took Camille to preschool and I cleaned up from lunch. Joseph watched TV while I tried to get G to nap but ended up napping in the recliner in his room. It wasn't a GOOD nap and I was still pretty tired.

We read Joseph's school books, got Camille, I cleaned up the blown-around diapers from the porach (I really need a drying rack and clothes pins) cleaned up a little and made a "lunchables" dinner. Adam took the big ones to Joseph's takwondo class while I put Georgie to bed. I've thrown in another load of laundry (number 3 for the day) that included the one pair of spring pants that fits me. (Georgie smeared chocolate on them.) I've cleaned up the kitchen, run a second load of dishes in the dishwasher, started the grocery list for the week and am about to watch the Duggars and fold laundry.

Now I'm tired again....

Nina's Health Update

We went to Mayo today to meet with Nina's pediatrician and go through all the test results. Her doctor is wonderful! He is so gentle with her and he has really listened to all of our concerns.

He went through all of her blood work first. What we know is that all of her vaccines are up to date, she does not have tuberculosis, she has no STD's, no HIV, all her blood counts are normal, liver function normal, nutrient absorption normal, and she has no parasites.

Her echo actually came back showing her heart is fine (so I really did worry for nothing!)

And her aspiration report had already been shared with us as we are already doing something about it as well as having surgery. He did a great job at explaining with easy terms what Nina's surgery procedure will entail. Oh, and her surgery will be April 22!

Nina has not gained any weight, and today she was even bellow what she was last week. The doctor thinks that it will take a while for her body to get used to her new diet and lifestyle, so he said to just wait a while, and add calories to her. We are doing Carnation Instant Breakfast (and really, what kid does not like chocolate milk!) We just need to check her weight, height, and head circumference every month for six months and then see if we need to check into anything else that could be going on. We hear this is normal with older children that are adopted from oversees.

It was all great news to hear, so we are feeling encouraged. Now we can really focus on her mobility issues and she should be getting her braces on Wednesday.

Thanks for praying!

His One and Only Son

Last year, I had the privilege to meet Michael Anthony Schulz, a sweet baby boy. I got to hold his tiny hand and see how beautiful he was in a small hospital room. I watched his mommy and daddy love on him with strength and grace that came from God alone.

His mommy, Brittany, wrote a beautiful post during Christmas time. I wanted to share it then, but never got to it while I was in Ukraine. As I think about Easter a week away, her post keeps coming back to mind. Today I want to share it with you.

I suggest you grab a tissue.

To Our Family and Friends,

At the start of 2009, Mike and I did not know what the year was going to bring us. We patiently and prayerfully anticipated each new day with a joy and a strength that only God could provide. We did know two things for sure: 1) we would celebrate the birth of our son and 2) we would be relying on God through our tears of sorrow and happiness.

On March 3, 2009- almost one month early- we welcomed our first born into the world, our son, Michael Anthony Schulz. Mike and I are incredibly blessed to have our son! We love his perfectly made toes, fingers, and smile. He has the brightest blue eyes that shine with love for his mommy and daddy. We knew on Wednesday, November 12, 2008 that our son would be fighting for each day of his life while inside his mommy and after his birth. On March 17, 2009, as Michael’s mommy and daddy, we were able to sing our son home to heaven. He met the arms of Jesus at 1:30am on March 18th.

Michael Anthony Schulz is the greatest blessing of our lives. Great blessings of this magnitude cannot come without great trials and sufferings. To take away the pain would be to take away the most magnificent joy. 2009 contained a pain that overwhelmed ours souls but through the grace of God miraculously soothed our hearts with the fact that we are the mommy and daddy to the greatest little boy who lived for two weeks and one day. Our precious miracle taught us what it means to love, what is truly important in life, and how merciful and gracious our Lord and Savior is. The most fulfilling two weeks of our lives were spent in a tiny private room shut off from the world by two pocket glass doors and hospital-grade pink curtains. Like the lowly barn where the miracle of our Savior’s birth took place, so was the unassuming hospital room where our precious miracle would spend his days on earth. Two of the biggest blessings in our lives came in the most fragile, desperate, yet beautiful bodies.


As we welcome Christmas, we understand that God’s ways are not our own. As we thought that we would be spending this Christmas as our son’s first, God knew that His plan for our lives required our son to be in heaven being cared for by Jesus. Mike and I understand what it means to let go of our one and only son. Yet, we still cannot comprehend what God did for us when he sent his one and only son to be born in a lowly stable. God had the joy of watching His Son grow and mature in His love and obedience. God also had the pain of watching His one and only son willingly give up His life in obedience to death on the cross for the glory of God and to provide a way for each one of us to follow in obedience and in the love of Christ to accept His free gift of salvation. The book of Romans tells us that the best works that each one of us can do is still only as good as filthy rags. Our sin separates us from the love of God. In God’s grace and mercy, he provided a way for our sin to be blotted out- the only way for sin to be covered is by the shedding of blood. Jesus, God’s only son, is able to cover over the multitude of your sins by his one-time sacrifice. By repenting and accepting this offer of perfect love, you can be free from your sin and guilt and be able to live out your purpose in life to glorify your Creator! How perfect are His grace, mercy, and love?!

As you look at the picture of our son enclosed, please remember the following: we have a perfect son in the arms of Jesus; we are not deserving of anything, but are fortunate to count our many blessings; and our son has the promise of heaven, which has also been provided for you by the birth and death of Jesus Christ. We pray that you are our brothers and sisters in Christ!

MERRY CHRISTMAS!

We love each one of you,

Mike and Brittany Schulz

“I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord.”

- I Samuel 1:27-28

“God gives; God taketh. Blessed be the name of the Lord.”

- Job 1:21

You can visit their CaringBridge page by clicking here.


My Soul Proclaims the Greatness of the Lord

When I was teaching literature to four homeschooled girls, one of the mothers gave everyone a copy of a CD called "Saints." Created by a local preist, Fr. Kent O'Conner, each song is about a different saint. Three of my favorite songs are on there: one about Saint Gianna Molla, St. Maxillian Kolbe (I love his story so much and would love to use his name but think about Maximillian with Adam's last name) and Mary.

Mary's song is a lyrical version of the "Magnificant." Taken from Luke, they are Mary's words to Elizabeth when she goes to visit her cousin before the birth of John the Baptist:

My soul proclaims the greatness of the Lord,
my spirit rejoices in God my Savior
for he has looked with favor on his lowly servant.
From this day all generations will call me blessed:
the Almighty has done great things for me,
and holy is his Name.

He has mercy on those who fear him
in every generation.
He has shown the strength of his arm,
he has scattered the proud in their conceit.

He has cast down the mighty from their thrones,
and has lifted up the lowly.
He has filled the hungry with good things,
and the rich he has sent away empty.

He has come to the help of his servant Israel
for he remembered his promise of mercy,
the promise he made to our fathers,
to Abraham and his children forever.

(Lk 1:46-55)


The first stanza is the chorus of the song and this chorus has been played over and over in my head. Every morning when I go to swimming, or when I am alone in the car, or when I pull rank on the kids and listen to MY music, I play this song at least once. It's become my mantra, my meditation, what I needed to and try to remember through this pregnancy.

"My sould proclaims the greatness of the Lord..."

Today, I am 37 weeks, 0 days. I am not term; full term is considered the end of 37 completed weeks of pregnancy. Babies do "better" at 38 weeks. But I am ONE DAY away from the time Joseph was born. ONE DAY. Joseph was a take home baby.

I had very little going for me at the beginning of this pregnancy. I had carried one baby, Camille, into the "safe zone" of pregnancy, as even 37 weekers can have breathing problems. My most recent birth had been to a preemie and that had only been 8 months before. I have a history of miscarriage, luteal phase defects and low progestrone. I was anxious. My dr and I figured I had a 60 per cent chance of another preemie.

Those aren't horrible odds but they aren't terribly great, either.

My dr, therapist, husband and myself were very pro-active this pregnancy. I took progestrone and zinc for a long time. I've exercised and Adam's listened to me when I told him I can't do something, like run the vacuum. He's stepped up to the plate in so many ways. My friends listened to me and didn't dismiss my feelings. They acknowledged and help me work through the post-partum trauma that was still haunting me from Georgie's birth. And they never, ever judged me for it.

"My spirit rejoices in God my savior..."

At the end of the day, the only reason I have made it this far, in good spirits, in great physical health, is because of God's grace.

"For he has look with favor on his lowly servent..."

I don't think God gives (for lack of a better word) a pre-term birth to anyone to smite them for their lack of faith. I don't think we were being punished for something. I won't begin to understand why some babies have to go through the pain, the suffering, the long term ramificants, of being a preemie. I don't get it. I don't begin to get it. I won't get it, as I am a mere mortal, a lowly human and there are some things I won't ever understand.

I can tell you that, in the NICU, I prayed for my friends who lost children. As horrible as it was, I knew that some day my baby would come HOME and we would deal with whatever problems were thrown at us. Some of my friends would NEVER bring their babies home and would have gladly accepted the NICU cross because it ment a live baby. I offered my suffering for them.

In the months that followed, when I was plagued with flashbacks, with fear, with guilt and then riddled with anxiety about Cheesie, a scene from Mel Gibson's "The Passion" would come to mind. In it, Jesus is carrying the cross and stumbled. Mary flashes to when he was a baby and would stumbled; she wants to run, pick him up and make it better. She's a mother and that's what we DO. She couldn't comfort her baby. I knew, I was reminded, as I sat their crying and suffering with my son, that Mary was hugging me, telling me she knew EXACTLY how I was feeling and how she wished she could have suffered for Her Son too.

And I was reminded that there is redemption in our suffering.

Today, I am 37 weeks. Barring an emergancy in childbirth, my baby will come HOME with me. Today, my sould proclaims how great God is, that with His help, I have made it this far. I have gifted my son with healthy lungs and the ability to suck, swallow and breathe- to EAT.

It will be over any day now. Any day now, I will post that I had my baby. God willing, I will post that he stayed with me the whole time and needed no medical help.

We still need and want prayers. But I made it this far and that is WONDERFUL.

St. Joseph, pray for us
St. George, pray for us
St. Faustina, pray for us
St. Gianna, pray for us

I did it!

Today, for the first time, I took all three girls with me to run some errands. Yes, you read that right: for the first time, and all on my own!

No big deal you might think, but getting a 2, 3 and 4 year old to cooperate is not always easy! Ellie did a great job being a big girl on our first trip. She helped me push the stroller. Second trip we went to the store and all 3 girls rode the cart. They even managed to stay happy until we were checking out, where I had to warn them if they did not hold it together for 5 more minutes we would be out of there with empty hands and NO CHOCOLATE! We made it to the car and home without a glitch!

I do realize at times I might end up in a predicament that will not be as easily solved (unless I always have chocolate with me.) After some thinking, I have ordered a backpack carrier from babyhawk that I am sure will come in handy for the times where I just need all 3 girls strapped into either the stroller or my back!

So I did it! I have graduated to the next level. The mama with the 3 kids can do it on her own!

Whole lotta nuttin' :)

That's right, there's a whole lot of NOTHING going on with my cervix! I've seen parts of my mucus plug 3 times now but my cervix is still far back and not thinning out much. I've had light, not painful (for the most part) but very annoying contractions since Saturday. They've spaced even farther out now, which is good. I'm almost two WEEKS beyond where I had Georgie which is awesome for our new little boy!

We're just hanging out. I am completely in "cave mode" and want to stay at home. Actually, I want my cave to be clean and quiet but those are rarely happening. I've not been in the mood to cook much and I'm pretty tired. Tuesday and Wends every.single.thing was annoying me and then I got adjusted and feel soooo much better. I am still tired- I slept through my "swim alarm" both days this week!

Georgie is acting more like a toddler and less like a baby. He still LOOKS like a baby, with four teeth and no hair but, well, he's wearing 3T shorts (and 12-24 month shirts, go figure). We mean it when we lovingly say he's a bit of a freak for this family. I think he's getting ready to be a big brother, as he's loving on his stuffed animals and baby doll.

Speaking of stuffed animals, the older two saved up for pillow pets. Joseph got a dolphin and Camille got a ladybug. G kept taking the lady bug from Cami and pitching a fit when I gave it back to her. I called Adam one morning over spring break and told him I had broken up 8 fights over the pillow pet and it wasn't even 9 am! He didn't believe me until that weekend when he saw first hand G's lust for that pillow pet. He went out and got G his own. Heh.

Spring is hopefully spring-ing... let's see how long this nicer weather lasts!

Having a Sister With Down Syndrome and one with Cerebral Palsy

Yesterday, Ellie and I were talking about her sisters. It really was not a meaningful conversation, but we were talking about the fact that Nichole has Down syndrome and Nina has Cerebral Palsy.

I often wonder what she thinks. I can tell you that she does not see her sisters as "different," even though she is aware that in some ways they are. Still, I had to ask.

"Sweetie, what does it feel like to have a sister with Down syndrome and a sister with Cerebral Palsy?"

Ellie looked at me and made a face, "What do you mean mom?"

"I don't know, I guess I was just wondering because my sisters did not have Down syndrome or Cerebral Palsy."

"Well mom" she said, "It feels like..normal!"

I smiled.

Normal, it feels like normal. And why wouldn't it feel like normal? They are her sisters, plain and simple. Whatever diagnosis they might have, has nothing to do with their relationship. They just are who they are.

Pretty wise words from a 4 year old.

So for anyone wondering what it is like for Ellie not having "normal" siblings. Well, wouldn't you know it, it makes no difference to her as she will be the first to say, "It feels like normal!"

Nina's Health Discoveries

Last month I posted about our 2 days in Mayo. I mentioned that what was our general pediatrician and neurology appointment had trickled into seeing many more "ologists." The last 2 days we have seen these "ologists" who will in turn have referred us to more "ologists" and have resulted in scheduled surgery for next month.

Today our day started by meeting with an ENT. They are pretty concerned about Nina's aspiration, and her tonsils might be contributing to the problem. Next month, Nina will have her tonsils out, and they will look at several parts of her throat as well as her lungs. I think there are 6 procedures that will take place. Right now they are all jumbled up together so I cannot tell you all that will happen. But, we will stay over night, and they did go over some risks (like a punctured lung or severed vocal chords, which freaks me out!). This is all because of her aspiration, and we need to check and see if this has been going on all her life, and if there is any permanent damage done to her lungs and throat.

They could not check her ears due to excess wax, so her ears will be cleaned while she has her tonsils checked. Also, they decided we might as well only sedate her once, and her MRI most likely will happen that same day.

Yes, April 22nd will be a huge day for Nina!

Rehab doctor checked her over and Nina is now scheduled for a round of Botox injections. She is going to have some pretty good looking legs! Ha! Botox is used to help the nerves stop firing a signal to the brain, therefore, the muscles can relax and her legs will not be as tight.

We added an X-ray in there.

Then we had an echo. I asked the technician at the end if there was anything we should be concerned about. I am no expert on heart ultrasounds, but something looked funny. Her response left me very uneasy. "Sorry, I cannot tell you what I saw. They told me your doctor will go through those results with you." So, there is something, because she did not say, "No, nothing to worry about."

Then, we had a bonus appointment with an audiologist (ENT thought we should see him.) let me tell you, I think this doctor has to be the best kids doctor EVER! Loved him! And Nina did too! Verdict, Nina has great hearing on her left ear, but very limited hearing on her right ear. They will have to recheck once the ears have been cleaned out and they make sure there is no fluid.

Top it off. Nina has gained NO WEIGHT since we got her. She is almost 4 and only weights 26 pounds. Could it be the heart? Could it be aspiration? Could it be something else? I don't know! We will know more on Monday when we go back and go through all her results.

So if you think about Nina, will you pray for her? Pray for her body, and pray for wisdom for the team of doctors working with her.

I am exhausted, I will go to bed.


Swallow Study

Today Nina had a swallow study done.

Almost every time that Nina takes a drink, she kind of chokes a little and starts coughing. Sometimes it is pretty mild, and sometimes it sounds a little "alarming." There are times that even her saliva will send her into a coughing frenzy. And for this reason, she had a swallow study done to check for aspiration.
So let me tell you what this means for Nina. Basically when she drinks thin liquids, her epiglottis is not working properly. By all means this is the easy way to explain it because this is how I understand it. You will see in the picture below, that the epiglottis is a membrane (or muscle?) between the esophagus and trachea. This membrane is supposed to "move down" as part of the swallow reflex to close of or protect the trachea, vocal chords, and lungs in order to keep out food and liquids.

Well, Nina's does not close down when she drinks thin liquids, which is why she starts coughing. She is in fact aspirating. It seems like her liquids need to be "honey like" consistency in order for her to swallow properly.

What was the swallow study like? They gave Nina barium to drink and basically took an X-Ray video to see what her throat was doing. She aspirated every time until we got to the honey like consistency.

Food is another story, but she is not aspirating, so we will leave it at that. We don't have to be concerned about it, so we will let it be. In Nina's case, this is part of having Cerebral Palsy.

So from now on, we will be thickening all of Nina's drinks to a honey like consistency. Oh fun! Actually, I really don't mind it, I am thankful that she does not need a feeding tube.

And, Nina loved the plain barium! They ran out of koolaid to disguise the flavor and wouldn't you know it, she loved it! She would have no more koolaid stuff. Now what did they feed her at the orphanage? She likes barium? We cannot get her to eat, but she will drink barium!

I did leave thinking maybe Nichole needs a swallow study done too.

The way back home was hard. Nina cried the last 40 minutes. It was draining. Andy pointed out she was displaying orphanage behaviors, we had not seen some of these for a while. Makes us wonder what really triggered it, what is going on in her little heart and mind.

So tomorrow we go back for another full day. You can keep us all in your prayers.



iPhone/iPod Touch Augmentative Communication


Proloquo2Go:



What's Proloquo2Go?

That's what I thought when I started hearing about
a new application for augmentative communication
available through an 'itunes App' that works with the
iPod Touch and iPhone.



What sparked my interest in Proloquo2Go is the fact
that the communication application downloads to a
device (iPhone or iPod Touch) that is so portable
and can easily go with you anywhere.

Hence, my child, Matthew, who has Agenesis of the
Corpus Callosum, and who is non-verbal can now take
his very cool iPod Touch with him anywhere he
goes and use it to 'talk'.

We explored whether or not to buy the iPod Touch
or the iPhone but in the end it came down to I
don't need another cell phone and Matthew doesn't
use cell phones. For Matthew, we chose the
iPod Touch 3rd generation 32 GB. This way we don't
end up having a monthly cell phone bill and he won't
mess with dialing phone numbers to who knows
where.

Oh, we still have our large communication device
that Matthew uses at home that cost nearly $8,000
and we love it.

But, now we have solved the disappointment that
I had with the large communication device not
being functional for carrying around with him or
taking easily outside of our home.

After all, when someone is non-verbal and they
use an augmentative communication device to help
express themselves...that device should go easily
and effortlessly with them anywhere just like
anyone else who does have a 'voice', I think.

As for the cost of Proloquo2Go...it's a fabulous
$189.99! This is an affordable way to give our
child, Matthew, a voice and allow him to have his
voice with him anywhere he goes.

When you use the iPod Touch and Proloquo2Go
you will want to buy an external speaker for it.
Even though our iPod Touch has a built-in speaker
it is too quiet to hear it well, even at the maximum
volume level. If you were out in public or in a busy
restaurant you would not be able to hear the device.

We chose to buy the iMainGo2 external speakers
for Matthew because it comes with a zippered
case that protects the iPod Touch. The front of the
iPod Touch is seen but covered with clear plastic to
protect the screen.

Front view of iMainGo2 speaker system and case:


Back view of iMainGo2 speaker system and case:

CNET review for iMainGo2 speaker system and case


Want a better idea of what Proloquo2Go augmentative
communication has to offer?

Check out a few of their tutorial videos:








Proloquo2Go, we think you're pretty terrific!!

Thank you Proloquo2Go for making it possible for
my child who has Agenesis of the Corpus Callosum
and who is non-verbal to have a voice with him
everywhere he goes and for making it at a cost that
is affordable.

Have you been considering getting an augmentative
communication for your iPhone or iPod Touch?

I encourage you to explore Proloquo2Go and see
if it may be an option for your child who would
benefit from an easy and very portable augmentative
communication device that is ultra cool for a kid
to carry and use.

Below are some of the links that I used while
exploring to help you get started on your own
exploration of Proloquo2Go:

TUAW Proloquo2Go Review

About Proloquo2Go


Proloquo2Go Frequently Asked Questions (FAQ)


Proloquo2Go Manual

Proloquo2Go on Facebook Questions and Answers

uquery.com Reviews

iPod Touch in the News-helps autistic kids learn to speak, communicate

Talk to your child's Speech and Language Pathologist
(SLP) to see if Proloquo2Go might be an option for your
child's particular needs and abilities. The SLP may
even have a copy of Proloquo2Go so that your child
would be able to try it out during a therapy session.

Please be aware that there are resource centers
available in some states that may be able to loan
Proloquo2Go for your child to test before you make
any purchase.

Proloquo2Go offers a link to Resource Centers in the United States, Canada, Latin America and Europe.
If your state doesn't list a resource center available
on the above links to borrow or try Proloquo2Go,
consider looking for other resource centers available
in your state.

For example, In Oregon where we live, we have OTAP which stands for Oregon Technology Assistance Program.
OTAP has a Loan Library with numerous augmentative communication devices to borrow on a trial basis.

A perk with having the iPod Touch for Matthew is that
I am able to download kids Apps from itunes to his iPod.

He has always loved "The Three Little Pigs" story.
It's his favorite. Well, last night I spent time exploring
and reading reviews on itunes and I found what I hoped
would be the perfect "Three Little Pigs" story for Matthew.



Happily, I can tell you that it was a huge hit. Matthew
sat in his room last night with his iPod Touch watching
the very adorable Three Little Pigs story written by
Kidztory.

He can touch the pigs and they make piggy snorts.
He thinks it's funny and frankly so do I. It's the
greatest feeling to see my child sitting on the floor
of his room actually using an iPod, learning how to
use it from what I am showing him, figuring out things
for himself...and having fun.

Matthew loves books but he doesn't point to pictures
in a regular book when I ask him to find the pig or
ball or apple or other familiar items even though he
knows what a ball, apple, pig and other pictures are.

He is very much a visual + auditory learner. Matthew
has always been motivated by cause and effect toys.
Matthew needs to see a picture, push a button and hear
the word or sound. He also needs this means for
expression of his knowledge.

Now, while using the iPod Touch, he instantly touches
the "pig" when I ask him "Where is the pig?" or
"Touch the pig".

With the iPod Touch, Matthew is not only able to use it
as a augmentative communication 'voice' through the use
of Proloquo2Go but he is also able to learn and express
his knowledge through the use of kids educational
applications or "apps" available for download through
itunes.

I am excited about this newfound path that will help
Matthew make progress in his educational learning
process. I can't wait to go explore more educational
apps in itunes to meet Matthew's educational needs.


Note: Agenesis of the Corpus Callosum is a congenital defect.
A child who has ACC (or a corpus callosum disorder) is born with it.
Agenesis = missing or absent. Therefore, a child who has ACC is
completely missing their corpus callosum. The corpus callosum is
the largest commissural pathway in the brain consisting of over
200 million nerve fibers and allows for communication between the
two hemispheres of the brain. Agenesis of the Corpus Callosum has
a very broad range of how it can affect a person.

I do not endorse or receive any monetary benefit from Proloquo2Go or other website companies mentioned. The Proloquo2Go and iPod Touch are based solely on my child's own specific needs and were purchased by us through our own out-of-pocket expense.

World Down Syndrome Day 2010

Two and a half years ago I thought my world had shattered into pieces. As I held my baby girl all I could see was her diagnosis; Down syndrome. I did not want to have a baby with Down syndrome. I wished with everything in me that we could scratch it all and start all over again. I even wondered if God had made a mistake, because this was certainly not a part of my plan. Dreamer as I am, a child with Down syndrome did not fit in my future. Maybe if she was gone, my life would make sense again.

When Nichole was two weeks old, we thought there was a possibility of a serious liver condition that could take her life. This is it, I though, God is really going to take her because I don’t want her. Was I really that full of selfishness that it had kept me from loving my daughter?

That day I kneeled down on my living room floor. Not because I was praying, but because I was crying so hard, that I couldn’t stand. I had so many emotions inside of me; they rushed out in tears and sobs. And I did pray, raising my arms, “I choose to love her Lord. With everything that I am, with everything in me, I choose love!” And I meant every word.

That day marked the end of my self-pity.

That day marked the beginning of a life altering journey. One that we continue to travel, and one that we have embraced.

Down syndrome. Back then the words seemed so dark, so scary.

Down syndrome. The words now are full of love, unconditional love. They are wrapped in joy, peace, kindness.

The baby that I never wanted, was the baby that I always needed.

Nichole has taught me more in her lifetime that I have known in mine. Down syndrome has been a gift, a wonderful gift. She was never broken, I was. And God uses her to do His work in my life.

We have discovered shades of color that we never knew were possible. A statement that I read in Gifts and that has proven to be true as we continue to walk this road. Nichole’s life has been so rich and deep. She continues to teach me lessons that are profound in meaning. We know that the value of a life is not based on what we accomplish, but in our ability to love. All because of her.

Nichole saved the life of a once-orphan girl in Ukraine. One that is now a part of our family, and one that we call our own. Nina’s brokenness would have scared us once but now we can embrace her because of Nichole.

John 9:3 has been true in Nichole’s life as the power of God is displayed in her life.

God’s child, God’s precious child given to us.

Nichole.

She is not just the child I always needed. She is the child I always wanted, I just didn’t know it.


Argh! Some people!

Any idiot with three brains cells to rub together knows Adam and I got married "young" much to the dismay of our parents. Because, you know, I was supposed to be a famous writer and he was supposed to be the single dork with a dirty apartment who worked on Corvette engines. So, we threw our lives away. Right?

Riiiiight.

Then we have babies, which I have ALWAYS wanted, and settle into life in the suburbs. And we have more babies... close together. And we end up having more babies than anyone else in our families except for my grandmother, who had 5. (Two o f them were 12 months apart and yet she survived.)

We have a super nice house, live within our means, never ask for money, occasionally ask for baby sitting help and no one is starving. My house is clean and the kids are well educated.

Yet CERTAIN PEOPLE keep sticking their noses into our family planning busniess.

You know what? College is over ten years away. It does not cost millions of dollars up front to raise our children. Considering we spend around 110/week on groceries, tolierie and eating out COMBINED, I think we are doing just fine in the money department, thankyouverymuch.

I'm going to need alot of physical help when this baby comes and I am so thankful for my friends who will come over and just sit with me while their kids play with mine. It hurts that I can't trust family to cheerfully show up with a smile and willingness to help. But you know what? The older we get the more we realize that our famil of CHOICE is so much more important than our family of origin!

Educational Documents




Kids and school and ACC.

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” please
E-Mail me.
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

ACC Reading and Comprehension

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

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


Teaching Resources


Tomorrow...

Is World Down Syndrome day!

Swings and Fun

We have had beautiful spring weather the last week. It has been wonderful to see the snow melting and revealing the sleepy grass. Ellie woke up one morning and must have looked outside the window, she came running into our room, "It is spring, it is spring! The grass is growing!"

After a morning of therapy, we came home and after taking naps we went outside for a stroller ride and a bike ride. What a beautiful day! We did not want to go back inside so we played in our back yard. We went swinging, sliding, and climbing.

This was Nina's first time in a swing! (That we know of, there was one in the orphanage but at a different baby house, so I really don't think they got her in a stroller to take her down the road to it)

As soon as we started pushing the giggles erupted from her. She giggled and giggled and giggled. Nichole was swinging too, so Nina asked me to swing with them (there are 4 swings) and Nina thought it was fantastic that all 3 of us could swing. Ellie was having fun in her "tree house" climbing up and going down the slide.

Nina and Nichole spend a lot of time together when Ellie is in school. Here they are wearing their tutus and putting crayons inside bottles. Talk about a great exercise for fine motor skills!
Sweet Ellie posing for her picture :)
And Nichole having a hard day when all she wanted to do was cuddle with daddy. For the rest of us she had a, "Noooooo!"

Why I Cannot have the Baby Right Now:

I found some of my plug yesterday. Ew. Joy. I've been contracting a bit. At 35+ 5, I'm not really interested in having a baby for another week. I created this list for FB, which is, of course, being a butt and not posting anything.


Because I am the mommy and I said so.

His name might just have a link to Ireland but that doesn't mean he needs to be born near St. Patrick's Day.

Come on, baby. Don't you want to harass your oldest brother for the rest of his life by making him share his birthday?

My doula is out of town until Monday. I know my back ups rock out loud but, frankly, I want the fab-u-lus Dr. Alyssa to be there!

We're racing with Kyle and her baby. You need to let them win. (And if her Bean comes out first, I will by him lots and lots of Star Wars toys AND candy. If you come out first, you are GROUNDED!)

Two words: Lung. Maturity.

Because if you come before 37 weeks, I might have pump. Pumping stinks.

I have a maternity photo session tonight and you can't have awesome, sexy picture taken while you are in labor.

Your grandparents are coming this weekend and they don't need to see Mommy a blubbering, hysterical mess. Again.

Your grandmother was born on Palm Sunday and therefor, you should be too. Or anytime after that. Like Easter. Or after that.

I want to go to the Easter eggs hunts. You can come too- in utero. But not out of utero.

I will get to steal more chocolate if I can go to the egg hunts. Therefore, you will get more chocolate. Chocolate is good for you. Really.

The house is a mess. I need to finish your room and your brother's.

The baseboards are not clean.

When the dr told Mommy to make sure she watches her weight, he didn't mean to stop the weight gain by you coming early.

Just because I am starting to have on and off signs of pre-labor doesn't mean real labor has to start.

And remember, Mommy is in charge. Mommy is in charge. Mommy is in charge.

Right? Right.

The Uncertain Road...



While browsing through the archives of an
Agenesis Corpus Callosum support group that
I belong to I came across some messages that
I had written in the past about my child,
Matthew, ACC and my feelings.

I contemplated whether or not to share some
of my past personal feelings here for others
to view.

After careful consideration, I decided
to give it a go in the hopes that it might
help someone.

This particular post from the past is
something I wrote when my child was 7 1/2
years old. It was written in response to
the parent of a baby with ACC.



September 5, 2001

"I just read your e-mail and sympathize with your
frustration and confusion. I am also a parent of
a child with complete ACC. My little boy was
diagnosed with ACC when he was four months old.
I was beginning to question his development before
he was diagnosed just a little bit. I remember
asking some of my friends about when their kids
rolled over because Mathew was not yet even
beginning to come close to rolling over....but I
never imgained that he would have this rare and
baffling condition when his pediatrician ordered
a CT scan. It was shocking and needless to say...
my world turned upside down.

You wrote something that I think every one of
us parents can relate to....

"Wait and see what is gonna happen.
You know it really makes me
crazy knowing that everything
could be okay ---- but no, wait ----
he could have major problems."

I am quite sure that most every parent wishes
that there was some magical type of test that
could reveal EXACTLY what they could expect in
terms of how ACC will affect their child.

When Matthew had his first EEG to rule out any
seizure activity and the results were negative
indicating that he did not show any signs of
abnormal brain activity or seizures I felt
relieved...and THEN...I was told that he is still
at risk for seizures happening so it was like the
good news was once again said with the frustrating
news on top of it. For me, the wait and see,
the wondering, the unanswered questions were
incredibly difficult to deal with.

In the beginning of my son's diagnosis and
numerous doctor appointments....I was also a
wreck. I did not like going to his doctor
appointments either..mostly because I did not
want to hear one more thing that was wrong
with him.

When I was at his developmental evaluation...
he was having his ears tested because ACC can
affect their hearing. I remember the doctor
coming back in the room and telling me that
they suspect hearing loss in Matthew's right ear
and INSTANTLY I thought to myself...NO WAY!! I
didn't believe it and didn't even want to hear it.
I just shut him out and wasn't going to believe
what I just heard. After testing by an (ENT)
ear, nose and throat doctor...Matthew was found
to have fluid behind his ear...which was drained
and a tube was put in his right ear only.
They did an elaborate hearing test called an
ABR (auditory brainstem response) and Matthew's
hearing tested normal in his right ear and left
ear. It was a huge relief. I was very happy to
find out such good news...and needed to hear
those good things. Those good things can so easily
be crowded out by the other not so good news.

In the beginning of Matthew's diagnosis I would
sometimes want to read and know information about
it....and then other days I didn't want to think
about it. I was apprehensive in talking to other
parents. I was so scared I would hear something
else that MIGHT happen as a result of ACC...
and it scared me. I had trouble reading about
other children who had really severe problems
who had ACC. I think everyone is different
in how they deal with the news of ACC or with
the news of any type of condition or major problem.
You will know what is right for you and you
might go through days of needing to know more
information and days of blocking it all out and
not wanting to hear, think or see anything else
about it.

I found it helpful to have a developmental
pediatrician to talk with concerning Matthew's
condition. We are lucky to live very close to a
teaching hospital in Oregon
(Oregon Health Sciences University) and they
already knew of Matthew's condition and had seen
other patients with ACC.

I have found therapy services to be a great
benefit for Matthew. I chose to put Matthew in
physical therapy when he was six months old. He
also wasn't reaching for toys yet. I began
receiving Early Intervention services through
the county and they were very helpful in showing
me ways to encourage and help him reach for toys
and other things. We would roll up towels and
put them under each of Matthew's arms while he
layed on his back. Then I had one of those baby
gyms with hanging toys and the elevating of his
arms REALLY helped in giving him a little bit
of an advantage and he began to use his arms to
reach for the toys. Early Intervention therapists
come into your home and work with the child and
there is no charge.

I think that therapy indicates that there is
some kind of problem...and admitting that there
might be or is a problem is not always easy to do.
I wanted to believe that Matthew would not be
affected by the ACC.
I went through MANY emotions....so many emotions.

The hardest part is the "wait and see"....and
while it is INCREDIBLY difficult right now....
I can tell you that it does get better with
time...it does."



Sandie

*Mommy to 7 1/2 year old Matthew with ACC in
Oregon (USA)*

Today I am 35 weeks

It is 2:40 pm. In a few hours, at 5, I will be at the exact same point I was when my water broke with Georgie.

This baby is not Georgie. This pregnancy is not his. Everything is going sooo much better than it was with him.

I woke up this morning with contractions and the general feeling that two feet were stuck in my ribs. I am pretty uncomfortable but so damned happy to STILL be pregnant that I will gladly suffer through 5, 6, 7, more weeks of this to take my baby HOME with me.

The contractions have gone away but the feet in my ribs have not. My newest little boy is moving and bouncing around and seems quite happy.

Today is Adam's birthday. We are both mourning the loss of Fancy, nervous about what the next week will bring and happy to be going out on a date tonight. Adrienne and Gary are bringing the cradle when they come over and we'll get everything ready for him. His little quilt is made up, waiting to be draped over his sleeping form.

It is weird being 35 weeks pregnant and having birthed, held and nursed and 35 week baby. Cheesie is still a moving and rolling bump but Georgie was a BABY. A hairy baby with a large head, horrible mili and tons of vernix but a baby. His little brother is a bump.

If I can carry Cheesie through spring break, I will have given him MORE lung maturity, more fat, more time than his brother had. If I can make it past 37+1 when I had Joseph, he will nurse even better than his oldest brother.

My side hurts. I can only sit up super straight. I get tired easily. And I will happily bear it all to keep my baby healthy. I will suffer FOR him, instead of him suffering in the NICU. I love him more than enough for that.

Thank You For Giving

I don't know that there will be enough words to say "thank you" to all those who helped us bring Nina home. The longer she is with us the more she feels like she is mine, and I am not babysitting her as much as I used to. This last week I was reminded of the reasons why we adopted her, and of the darkness from where she came.

Three weeks before going to get her we were about $13,000 short. Yet, God provided...through you. What an amazing journey to be a part of, how humbling too. God's hand was upon Nina, He loved her, He created her. And besides the love of a family, what we have to offer is far greater than that, we have Jesus, she will know about a Savior that loves her desperately.

Nina loves to sing. At the orphanage I would sing to her "Oh no, you never let go, " and "Jesus loves me." Still her two favorite songs.

Andy was listening the other day at some music on the radio and the song "Thank you, for giving to the Lord." Was playing.

"I can picture Nina," he said, "Standing before our family and friends, singing, thank you, for giving to the Lord, I am a life, that was changed."

It was a very powerful realization of the difference that those that gave made in her life. Just months away from being sent to an institution and never hearing about Jesus, never knowing the love of a family.

So thank you, thank you so much. Even after 4 months, we can say thank you, and we will forever be grateful. And maybe someday, Nina will stand before all those who love her and sing "Thank you", because your gift saved her life.


FancyGirl died this morning.

She was old (14) and in overall good health aside from some hips problems. This past week we noticed she wasn't as active so we chalked it up to needing another cortizone injection for her hips. We took her to a new vet yesertday (we moved and decided we didn't want to drive 30 minutes to the old vet who never lit any fires under me, kwim?) and the vet felt a mass in her belly. She said if Fancy didn't perk up in the next day or so to come in and do x-rays.

This morning, I noticed her retracting and wheezing when she was breathing. I called DH to come home and take her to the vet, that we needed to know today what the mass was. When they did x-rays, they found a large mass, plus an enlarged heart and more masses in her lungs. We think there were more that we couldn't see. She also had blood in her urine this morning so I really think her body was beginning to shut down. She was calm but clearly not feeling well.

Last Oct, we prayed that she would either make the choice or that the choice would be clear. It was pretty clear today and we hated, hated, hated having them do it but I think she was ready to go. Thankfully, the office staff was wonderful, accomadating (they did it in the exam room and let us leave through the back door) and you know they love animals when the people you've only met twice cry with you. :*/

My MIL came over to watch the kids on short notice and helped clean up the backyard so DH wouldn't have to do it. A friend stayed with me when I was waiting for DH to call. It hasn't hit the kids yet.
****
I knew something was going on last week. I was in the shower and had the overwhelming feeling that someone wanted to "go." We have 3 elderly grandparents, so I thought them but as soon as I walked downstairs, I knew it was Fancy. At first, we were glad she was not going upstairs as going up and down the stairs was hard on her. She had cateracts and bad hips, so it was hard to move and see.

This morning... when I saw her retract and wheeze when breathing.... I pretty much knew she wasn't coming home. I always thought I would never be able to be in the room but Adam was so upset I stayed with them. It was very nice and we knew she wanted to "go" but, damn, I'd drink if I could.

Cheesie at 33 weeks

I had my u/s Tuesday. Joseph had been asking some hard questions about "when will the baby be healthy enough to be born AND come home with you?" Coupled with that and the fact that my science minded kid could NOT get his head around the way an u/s works, I let him go to school late and join me.

Cheesie is head down! She knew right away but still spent a good 30 minutes measuring and showing me different part. WOW has he grow since 20 weeks! I could see his long toes and I swear he has Georgie's chin. We even saw him suck his fingers. The tech looked for hair but didn't see any. I have baldies so I didn't care.

I made her check to see if he was still a boy. I had this totally irrational fear that he would be a she. TOTALLY stupid since I honestly don't care if we have boys or girls! But he is a he and WOW did his boy parts look HUGE on the screen!

Here's our sweet little Cheesie. I think Cadbury Peep is a good name, no?




So Sweet...



The thought of sending your little one off to
pre-school evokes many emotions.

But when you are the parent of a child with
special needs the thought of your child going
to pre-school can be incredibly difficult.

I came across an oh so sweet story about a
little boy who has Agenesis of the Corpus
Callosum and a few other medical conditions
and it touched my heart.

His Mama shares from her heart how she felt
about her little one and the thought of pre-school.

Flashback Flying

By the way, go ahead and check out the rest
of her blog too....it's filled with super
sweet stories that will put a smile on your
face and bring a tear or two to your eyes.

Celebrating the Bugg's *Special* Life

Another one of my favorites that Bugg's Mama
wrote (and I can relate to) is:

Getting Groceries With The Twins

Isn't Bugg just the sweetest little boy
with a big, happy smile?

His Mama tells the story of his birth
and finding out about ACC...

We Welcome Bugg

Thank you Bugg's Mama for sharing your
sweet stories about Bugg and your whole
family.

I just love this beautiful blog...it's
full of love and it makes me smile.

Learning Colors


What Color Is It?

BLUE

Ask some kids who have Agenesis of the
Corpus Callosum what color it is and they will
know. However, some kids who have ACC have a
difficult time learning colors.

Many kids who have ACC have difficulty with
abstract things.

C O L O R S are abstract.

My own child, Matthew, who has complete ACC
doesn't know his colors yet. He is 16 years
old and beyond the typical age that a child
would know their colors.

He knows the word for an object but trying
to help him understand that the object has a
color is something I find challenging and
I am not alone.

Recently, the topic of Learning Colors was
brought up in an online discussion by the
parent of a child who has ACC. The discussion
led to many interesting responses from other
parents who also have a child with ACC.

I thought the tips, advice and teaching strategies
would be worth sharing here.

Thanks to all the parents who gave their input
in the discussion and also their permission to
quote them, I am able to share it with you.

Question that started the discussion:



Parent of 6 year old child who has ACC writes:

"My son, David 6 years old, haven't understood
the different colors yet. Is this common for ACC-kids?
And does anybody know why this is a difficult thing
to learn?

Hope you understood my english..."

Parent of 11 year old who has ACC responds:

"It is typical with ACC kids. At least once a year
someone asks that same question. Colors are actually an
abstract concept, which is why they are harder to learn.
It took us a LOT of repetition to learn them and Jacob
still gets white and yellow mixed up even though he is in
regular classes at school. When Jacob was young we got
together with the his teacher and came up with a chart
of color names and pictures that he picked out that were
more concrete. When we would ask what color something
was he would say something like "the color of
strawberries, red. or the color like the clouds, white."
Find something more concrete to name and then associate
it with the color name. It is even better if you let
him choose the object names.

I hope I explained this ok :). Many ACC kids learned
their colors in this fashion. Do not be surprised if it
takes several months or a year. It should come.
ACC kids just take longer."

The color of a

RED



TIP:

"Find something more concrete to name and then
associate it with the color name. It is even
better if you let him choose the object names."


In the next response by a teacher who is also the
parent of a grown child who has partial ACC,
some important considerations were brought up:

  • Can the child really see colors?
  • Has the child been evaluated for color blindness?
  • Is the child able to match colors?
  • Is the child able to sort things by their colors?


Teacher/Parent of a grown child with partial ACC +
lobar holoprosencephaly responds:


"Your English is lovely. I wish I knew another language
as well as you know ours!

Lots of kids have this trouble. First of all, can
David really see colors? Has he been evaluated for
color blindness of any kind? Is he able to match colors,
or sort things by their color? If he can do that,
he is ready to go on. Sometimes a child can learn
to respond to the name of a color more easily than
he can actually name it himself. You might start
out saying the names and having him choose the right
one. If he can read already, you might give him a
chart with the colors and their names, and allow him
to use it for matching.


color chart-balloons

My friend teaches preschool, and she has her kids use
familiar objects to help her students. She made a chart
with pictures and they say "yellow like a banana" and
"green like the grass" (you need a picture, because the
grass isn't green in the winter!) and so on. You might
want to work on only a few, maybe three, colors at a time
at first."

YELLOW like a






GREEN like the





This same Teacher/Parent goes on to say:

"This is how my daughter learned her colors. She loved
to paint, and we had pots of paint for each color, with a
different brush for each one.


sample idea:
No-spill paint cups
color-coordinated brushes sold separately





sample idea:
Amazon no-spill paint pots & brushes set


I let her only have one at a time, and I did not
let her point to the one she wanted--she had to
say the word. At first she would be frustrated that
she was not getting the color she wanted. She'd say,
"No! I want the OTHER blue!" But she loved to paint
so much that she eventually figured it out. You might
find something like this that David is very motivated
to play with that works the same way for him."

Motivation is a huge factor in helping a child
learn something. Equally important is finding
what learning style works for a child.


My own child, Matthew, is nonverbal with only a
handful of words. He is a visual + auditory learner.
He is also developmentally delayed.

He is able to express what he knows and understands
best through the use of a computer or an augmentative
communication device. This allows him the ability
to see and hear something over and over that he is
working on learning and gives him freedom to use
as much repetition as he needs.

Matthew needs to see a picture, push a button
and hear the word. He uses a Dynavox V
communication device. Below is a colors page I
made on his communication device to help him
learn colors.



When he pushes the RED button, it SAYS "Red".
The screen then automatically changes to another
page with pictures of things that are RED.



I can add more pictures, change the pictures
to different red things, use less pictures, put
in real photographs of red things, type any
message I want the button to say when pushed and
so much more.

Even though at 16 years old, my son, Matthew,
is nonverbal (with only a handful of words) I
still encourage and help him to make a sound and
try to SAY words whenever possible.

Matthew is not able to match or sort using a
typical method. If I hand him an object and ask
him to match it to the right color he does not
understand.

However, I discovered that he IS able to match
and sort using other methods that fit his learning
style and abilities.

The matching method Matthew uses to express his
ability to match is through the use of books by
Roger Priddy. The books have a large, color picture
of an object on one side of the page and a talking
button with the matching picture on the other side.
When he pushes the matching picture button, he hears
the word being said outloud.

I wrote an earlier ACC blog post titled
Matching & Motivation where I explain Matthew's
matching and sorting abilities and methods in more detail.

"Let's say our colors" is a new book that I will be
using for Matthew to help him learn to match colors.


Amazon-Let's say our colors book


Parent of 7 year old child with ACC and autism
responds:


"I agree with (names the parent),,,this topic has
come up several times before and it seems to be an
issue with alot of our kids. However, to add a twist
to this topic,,,,Michael could identify his colors,,,
( as well as shapes,letters and numbers) by about the
time he was 2 years old. He does not speak,,so he
points to identify,,but he definitely took an interest
in these areas and learned them without a doubt very
early on. Cognitively, Michael is at about a 2 or 3
year old level. I don't understand how/why Michael
could learn his colors so much more quickly than
some of the older, higher functioning kids.?
I'm thinking it comes down to rote memorization,,,
that the abstractness of it all doesn't affect
Michael...? Michael has been diagnosed as being
mildly autistic,,,,so does this somehow enter the
picture as well ??? I don't know ??"



Parent of 21 year old child with ACC + chromosome
microdeletion 1q44 responds:


"I agree with everything that has been said about
learning colors. When my daughter Becky was very
young,she could match colors or hand you
"the yellow bears" or "the red cup" when asked.
But to this day, if you ask her what color something
is, she says, "blue." I think it's a word-retrieval
issue with Becky, and it may be that with other kids
who have ACC. She seems to have a pathway in her brain
that says "the answer to 'what color is it' is BLUE."
It is the first thing that pops into her head so she
says it. After that she'll start saying other color
names, but she doesn't consistently get them right --
even though we know she has known them for years
and years.

(On a side note, I always think I could impress
people by asking some abstract question to Becky,
like, "Becky, what color is the sky after a storm
passes by," or "Becky, what color is the background
of the stars in the American Flag." She would
definitely say, "blue." She will always answer
"blue" as long as the question has "what color"
in it. If you asked Becky what color Santa's suit
was she'd still say blue, or what color grass is,
or the sun...)

Colors really are an abstract concept so I would
first see if your child can match or point to colors.
If he has that correct, then you will know that
naming the colors is the problem, not understanding
them. Repetition, repetition, and repetition are the
key to learning the verbal part. I really like
(names the parent) idea about the paint pots, since
her daughter was so highly motivated to get them right.
If there is motivation + repetition, the learning
should come quicker. I also think that adding a cue
like "blue like the sky, green like the grass" is a
huge help because it gives an extra "signpost" on
the brain-pathway to getting the color right."

BLUE like the




Interesting Observation:

"She seems to have a pathway in her brain that says the
answer to 'what color is it' is BLUE."


TIPS:

"Colors really are an abstract concept so I
would first see if your child can match or point
to colors. If he has that correct, then you will
know that naming the colors is the problem, not
understanding them."


"If there is motivation + repetition, the learning
should come quicker."

"I also think that adding a cue like "blue like the sky,
green like the grass" is a huge help because it gives an
extra "signpost" on the brain-pathway to getting the
color right."


Parent of 4 year old child with partial ACC writes:

"I was having the same issues with my son Steve. I
even thought he may be color blind. Anytime someone
asked him what color something was he always answered
"RED". Now, after months of working really hard on
colors, he is starting to be able to understand them.
He still does not always have the right word, but he
can match colors accurately. We ended up starting with
a lot of matching and sorting games. I would put out
3 different colored buckets, and have objects that
were those colors. Steve would then sort the objects
into the right color bucket. After a few weeks, he
could do this, so then we moved on to matching: I
took different colored objects and I would hold up
a red piece of paper and have him grab the red object.

With everything, I am finding persistence and patience
are the best tools to have."

TIP:

"We ended up starting with a lot of matching
and sorting games. I would put out 3 different
colored buckets, and have objects that were those
colors. Steve would then sort the objects into
the right color bucket."




Interesting Observation:
Word Retrieval Issue...?


"When my daughter Becky was very young,
she could match colors or hand you
"the yellow bears" or "the red cup" when
asked. But to this day, if you ask her what
color something is, she says, "blue."
I think it's a word-retrieval issue with
Becky, and it may be that with other kids
who have ACC."


"Anytime someone asked him what color
something was he always answered "RED". Now,
after months of working really hard on colors,
he is starting to be able to understand them.
He still does not always have the right word,
but he can match colors accurately."


"She could point to the correct color
but couldn't tell me the color."


TIP:

"With everything, I am finding persistence and patience
are the best tools to have."


Parent of 13 year old child with ACC writes:

"Yes there seems to be a problem with colors.

My son Jacob took 2 years to learn colors. I had
every book, story, game or toy that teaches colors.
I knew he was not color blind because he could sort
the little colored teddy bears in the little colored
baskets. We tried every method and game to learn
colors and then one day when he was 4 or 5 he knew
his colors and never made a mistake again.

My theory on this is that it may be due to a visual
processing problem or delay. He does have a visual
processing delay. As with many ACC related issues
repetition is the key and "eureka" one day they
have it ! The brain is amazing."



Parent of 5 year old with ACC + colpocephaly,
chiari 1, sensory integration disorder, strabismus
and hydrocephalus responds:


"It definitely seems common for ACC kids to have
trouble with colors. Lisa had the same problem. She
could point to the correct color but couldn't tell me
the color. We used lots of repetition with Lisa, of
course we use lots of repetition in just about anything
with Lisa but once she has it, she usually doesn't forget
it. Lisa has a very big sweet tooth, so we used M&M's,
skittles, Reeces pieces, blocks, crayons, pointed to
stuff when we were out and about. I would say look at
the red stop sign, the yellow shirt. With the candy,
I would show her the colors, tell her and have her
repeat it. Then when I would show her one if she got
the color correct, she would get to eat it. I always
said the color to an object to help her as well. Lisa
has always ordered her blocks/ toys by color and shape.
I would always comment on her color scheme, i.e. I love
how you put the reds first, then the yellows, and blues.

She does have her colors now but it did take lots of
practices and impromptu lessons. Make everyday a learning
time with whatever you are working on at the time.
Also, if he is working on another specific skill right
now, he may have trouble with learning colors. Lisa can
only work on one skill at a time and the others are on
the sideline."

TIP: Parent of child with ACC & hydrocephalus in 2003 wrote:

"Concerning colors, add the color of whatever
you are doing, seeing, to the conversation -
today do you want to wear your red or green shirt?
Let's make salad - we'll use orange carrots,
green lettuce,..."


TIP:

"Lisa has a very big sweet tooth, so we used M&M's,...



I would show her the colors,
tell her
and have her repeat it.
Then when I would show her one
if she got the color correct,
she would get to eat it."


TIP:

"As with many ACC related issues repetition is the
key and "eureka" one day they have it!
The brain is amazing."





Rainbow Purple
Rainbow blue
Rainbow green
And yellow too

Rainbow orange
Rainbow red
Rainbow shining over head.



Hopefully you will gain insight, discover a
teaching strategy to try or possibly be inspired to
explore other creative ways to help your child who
has ACC learn colors.

GREEN light means GO!



It's time for me to go now. I can't wait
to help my child, Matthew, learn his colors.

The discussion doesn't have to end here.
Won't you go ahead and add your own comment?

If you would like to have a copy of this document
click on the link below for instant availability
and printing:

ACC Learning Colors - printable version


Note: Agenesis of the Corpus Callosum is a congenital defect.
A child who has ACC (or a corpus callosum disorder) is born with it. Agenesis = missing or absent. Therefore, a child who has ACC is completely missing their corpus callosum. The corpus callosum is the largest commissural pathway in the brain consisting of over 200 million nerve fibers and allows for communication between the two hemispheres of the brain. Agenesis of the Corpus Callosum has a very broad range of how it can affect a person.

A very special Thank You to each one of you who gave permission for me to quote you and for your willingness to share information in this document about your child who has ACC.

For privacy the names of all kids in this
article, except my own child, have been changed.


I do not endorse or receive any compensation from the
companies mentioned in the product links on this "Learning Colors"
document. I found the products through my own personal search while
creating this document and I decided to share them here for those
of you who might have an interest.