Learning Tools & Ideas #3

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 4-year-old child with ACC, says:

"About the only thing we have done that is unique, is our
son (age 4 c-acc) seems to need a lot of repetition to
retain things. So we used painters tape to make his
letters (and numbers) on his bedroom walls."

"He loved this, and it seemed to help him memorize his
letters (we are working on numbers now). We would just
do a couple of letters a week and whenever we would walk
by them we would ask him what they were. Eventually he
started to retain them."


On a personal note:

After reading this parent's tip, my husband went out and got some blue painters tape and adorned our child, Matthew's, bedroom wall with a capital "A" and "B", displayed in the photo above.

I was working on teaching Matthew the letter "B" and the sound "B" makes,

"buh buh....BOY",

"buh buh....BABY",

"buh buh....BEAR"

And he would make the sign for each word. I have been asking Matthew to show me the letter "B" and he will reach up and touch the "B" on his wall!

Then later he was standing by his television in his room (where I was also) when the "Bob the Builder" show came on, with the musical theme song.

Now this is not a show that Matthew watches, but that day it definitely caught his attention to the tune of Matthew babbling bunches of "B" sounds!! I am certain he was telling me that Bob the Builder has the "B" sound. So, with an enthusiastic smile, I told him...

"Yes, you're right". "Bob the Builder starts with the letter B", and then pointed to the big "B" on his bedroom wall.

Matthew's bedroom wall
For some unknown reason, the "A" mysteriously disappeared. My husband reported that someone → points to Matthew ← peeled the "A" off the wall, and it's sticky wadded remains were found in his bedroom. But hey, I'm all for that too...because it helps develop his fine motor skills and eye/hand coordination.

For now, we'll continue to work on the letter "B", which has remained on his bedroom wall for several weeks.

While putting this article together, I was searching the
internet and came across another neat idea using painters
tape and letters, by a different parent.

Much to my delight (with permission from the author:
Summer Kinard) I am able to re-print her terrific
idea here (complete with cute as can be pictures) for
you to see and read:

Summer, Mama of 2 adorable kids, (who do NOT have ACC), wrote:

"We are studying the alphabet, beginning with vowels. Most of the standard methods bore Pip. He abandoned the pasta gluing project after putting just six pieces onto his letter A glue outline, for instance. So I took it in a different, bigger direction. Andrew thought up the idea of putting the juggling balls over the taped outline, which was brilliant. Pip immediately "got" the lesson. Within a few minutes, he was looking for a juggling ball, and he was all, "Oh, there it is. It's on the letter A."

"Blue painter's tape is easy to peel off for at least three weeks. We'll add lowercase "a" next week."

© article and photos re-printed with permission from author.
view original article: A for a kinetic learner

Thank you to Summer Kinard for graciously allowing me to re-print your wonderful article and share it here on the blog.

Thank you also to the parent of a 4-year old child with ACC for your very informative input and great idea!

After reading these fun ideas shared by both parents, I was
inspired with all kinds of blue painter's tape letter
concoctions for how to make learning letters fun by gearing
it to a child's unique learning style and incorporating
motivational toys/items/games that the child loves.

I thought about Amanda (the mom who inspired this learning
tools section) and her son, Beau, who has partial ACC, who
LOVES matchbox cars!

I wondered if Beau might have fun playing with his favorite
cars, lining them up on top of the painter's tape letter "A"
on the floor, or maybe even on the "C" for Car?

One thought that came to me just now (for my child) is:

I plan to put two different pictures of balls (something Matthew loves) inside the top space and bottom space of the "B" on his wall.

Then we can change the pictures with new "B" words
that Matthew is familiar with and likes. He also really
loves....balloons!

You could use real photographs, drawings, you could
cut pictures out of magazines (if that's something your
child likes to do), you could take pictures of your child
holding their favorite Bear, Basketball, Cat, etc., or your
child could draw/color/create pictures of their favorite things that start with the letter "B", or whatever letter
they're working on learning.

I hope that the terrific ideas, shared by both parents, help to inspire all kinds of thoughts and ideas of your own for how to create fun techniques that fit your child's learning style.

These ideas promote Memorization, Multi-Sensory Methods and Meaningful Motivation, things that can help a child make some marvelous learning discoveries.

Plus, they also offer the ability for a child to have as much repetition as they need. And the need for massive amounts of REPETITION is one thing that many kids with Agenesis of the Corpus Callosum have in common!

Do YOU have a learning tool that you would like to share on the ACC blog?

I'd love to hear from you, and so would a lot of other people too, who will be able to see and read all about the learning tools and ideas that you use with your child who has Agenesis of the Corpus Callosum.

It is my hope that this section will become a collection
of multiple learning tools (for families to browse, see and
read about) to find a variety of new and inspiring ideas to
help their young child, teenager or grown child in many
different areas--from academics, to fine motor/large motor
skills, to sensory issues, to potty training--and anything
else that comes to mind.


Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau, where she shares some excellent ideas and fun "Learning Tools".

ACC & Moms-To-Be Story #11

I am very thankful to all of the Moms who want to tell
their story about being pregnant and having a baby with
Agenesis of the Corpus Callosum.

Each story is as unique as each child who has ACC.

Tracy, Mom of Jose, read one of the ACC Pregnancy Stories
on this blog, written by another mom, and she posted a
comment on the other mom's story. In Tracy's kind
comment she also expressed a desire to share her own
ACC Pregnancy Story here for others to read.

I got in touch with Tracy through e-mail and am
absolutely thrilled and very grateful to be able to
include Tracy's ACC Pregnancy Story here.

Thank you very much, Tracy. It is a privilege to
be able to share your story here on the blog. I
thank you from my heart for your desire to help
other people (and new parents-or parents-to-be)
through sharing your own personal ACC pregnancy
experience and story.

Written by Tracy:


Jose's Story

Our story begins during my awful pregnancy. I say awful, because that is exactly what it was. I gained 120 pounds. with our son, was in constant pain, had sciatica to the point where I could not walk for two months, had false labor a few times, a cyst bigger than a golf ball, and that is just the tip of the iceberg. When I was around 20 weeks pregnant I was seeing a high risk doctor due to all of my complications. When doing the ultra sound he informed my fiancé and I that he was concerned that our son’s (yes, he was now officially a boy) nerves in his brain were not developing as quickly as he would like, and he was concerned our child may have Down Syndrome. My heart dropped. The next 12 weeks felt like an eternity. All I did was pray and research. At 32 weeks, he informed us that he could not see the Corpus Callosum and our son was so stubborn he refused to move, even after the doctor tried to move him! We returned home, said more prayers and did more research. I was set to be induced at 34 weeks due to my placenta showing signs of starting to deteriorate. I went to the hospital 3 cm dilated and at positive 2. After two days of Pitocin and Cervidil, I was still only 3 cm, and my son was now up in my rib cage. I had to have an emergency C-section.

My son arrived on June 28, 2008, at almost 9pm! He had all his fingers and toes, was healthy as an ox, weighed in at
7 lbs 1 oz., and almost had perfect Apgar scores! I wasn’t sure if my son was different, but to me he was perfect.

Jose at 1 week old

When he was around 6 weeks old, he went for an MRI at the Children’s Hospital. It was confirmed that my son has Complete Agenesis of the Corpus Callosum. I was still unsure of what this meant for us. I did the research, but there was no hard evidence, just the whole wait and see that we still get to this day! What I did know was, I had a plan. I was determined to stick to my plan at all cost. Something inside of me told me what to do. Call it divine intervention or mother’s intuition, I had already put my plan into action, and now I knew I could never stop. We went home, and needless to say I broke down. There is no way to sugar coat it, it is the worst news any mother can ever get. I cried, I blamed myself and then got up the strength to suck it up and do what I knew I had to do.

Jose at 4 weeks old

What was my plan exactly? The main focus was treating him like a normal child, with a few exceptions. I knew he would need to be comforted a little bit more, and need extra attention. This is why my fiancé and I decided that I would now be a stay at home mom. While the income would be tight, we knew our son needed the one on one care. I only gave our son Enfamil Lipil formula, because the DHA and ARA content more than doubled that of its competitors. I knew that DHA helped aide in brain development, and was dead set on it. I read to my son every night, so much so that we could read 3 full length Disney books and he would keep his focus. Call me crazy, but I also started flash cards with him the day he came home from the hospital. Letters, numbers, shapes, and colors. My philosophy was if he needed extra time to learn, I was going to reinforce it as much as possible. I didn’t sing the typical lullabies either. I sang the alphabet, and a made up song of me counting one to one hundred. This was my son, and since there was such little information out there, I decided to go with my gut!

Around 6 weeks, my gut told me that there was something wrong with my son’s feet. I took him to 3 different doctors, and they all assured me he had a good range of motion and I shouldn’t worry. So I didn’t. My son also seemed to sleep a lot. He slept through the night from the day that he was born, and most of the day. As a new mother, I just assumed that babies needed their sleep. Turned out, it was just him needing sleep. He did however; give me his first smile at 6 weeks old. I was cleaning the house, and walked into the bedroom. I will never forget how his face lit up and this amazing smile filled his face! It filled my heart with so much joy, as it was the first sign that my baby boy knew who I was.

At 3 months old my son was starting to sit up on his own, but he would fall over a lot. By 6 months old, he weighed 30lbs, and didn’t do much of anything. The doctors were baffled that he was only eating 24 ounces of formula a day, because he was so big. They even had us admitted to the hospital so they could monitor how much he was eating. Low and behold, they discovered I was telling the truth, and didn’t find anything else wrong with him. At 6 months he did bless us with his first word, Dada! He also learned to roll from his belly to his back!

Jose at 6 months old

By 9 months old, it became clear that my son was different. I saw other babies his age walking, or about to walk, but he couldn’t do much of anything. He could say Mama, Dada, Baba, and Bobo (the Spanish word for pacifier). We applied to the Early Intervention program in our state, and it was the best decision we ever made. He qualified for PT (Physical Therapy), OT (Occupational Therapy), and Speech Therapy. They showed us many things that we could do to help our son.

Jose at 1 years old on his 1st Birthday

When our son turned a year old, the pediatrician told us he would most likely be a vegetable for the rest of his life. My initial response was devastation. Once again I sucked it up, because we refused to accept it. We put more focus on him and everything in his life became a form of therapy. Our son must have heard this because within the week, he could finger feed himself and said two additional words! He also stopped using his bottle and pacifier. We also let him sleep in a toddler bed, in which he learned to push himself off of, and he never once fell off!

Jose at 18 months old
By 18 months old my son could army crawl and roll over. By 2 he could crawl.

Jose crawling on mat
Note: faces of other kids covered for privacy
By 2 ½ he could walk unassisted for a short distance in his walker.

Jose using his walker
Note: faces of other people covered for privacy
It was also like a switch in his brain flipped! It seemed as if he just woke up and started telling us things. He could spell his name, name all of the animals and their noises, knew all of his shapes, colors, and alphabet! He was also diagnosed with spastic diplegic cerebral palsy and 5 % tibial torsion.

Our son is now three years old and amazes his doctors with his intelligence. He currently weighs 55 lbs and is still getting up on his feet and using a walker! The weight issue baffles them, as well as the whole issue with only from his knees down turning in. We do Botox injections and oral Baclofen, but they barely aid with his spasticity. We are currently trying to convince his neurosurgeon to give our son a Selective Dorsal Rhizotomy and then we want to proceed with an orthopedic surgery to correct any in-toeing that is left over. We then believe that he will walk without any assistance. He is the most laid back loving child that anyone ever meets. He is filled with hugs and kisses almost all day long!

My greatest advice to anyone just getting the diagnosis, is to not give up on your child when the doctors think that things are impossible. Children with this condition are capable of so much more than anyone could possibly imagine. We are fortunate to have another family in our life with a little girl one year older than our son with the same diagnoses. They are very similar to each other in terms of reaching milestones, with the exception that she started talking earlier and she is a lot more vocal! They both seem to show advanced intelligence levels! (She also started DHA from birth) So please, look at my son as a story of inspiration. He has gone from the doctors telling us he would never be anything more than a vegetable to having advanced cognitive function, and the biggest issue seems to be the nervous system issues with the C.P. (Cerebral Palsy). However, he gets around well with his walker, and with today’s surgical technique he will most likely walk by the time he enters kindergarten!

Jose

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.

Learning Tools & Ideas #2

Agenesis Corpus Callosum
Parent Teaching Tip:

Parent of 6-year-old child with ACC and hydrocephalus, says:

"When our son was non-verbal we used the Signing Time
videos to teach him sign language. He was already
infatuated with music so the videos held his attention."

Note: check your local library to borrow Signing Time videos.


"We also used the multi colored foam letters and numbers as
a bath tub toy. By the time he started Pre-Kindergarten, he
could count to 20 and knew all of his letters and colors."

UPDATE!
Re: Little Tikes Bath Letters and Numbers

Please be advised that testing in 2008 by HealthyStuff.org shows that they are toxic and contain high levels of mercury.


Thank you very much to the parent of the 6-year-old child
for your great ideas!


I have to say that I also use Signing Time videos with my
child, Matthew, who has ACC, and we love them! I borrowed two of the Baby Signing Time videos from the library so I could try them with Matthew. He really liked them. Then I borrowed several of the "Signing Time" videos. We liked them so much that we purchased some of his favorites!

Signing Time - read my personal blog post review

Other Sign Language resources (we also use) are:

Baby Einstein My First Signs-See and Sign with Baby

Baby See 'N Sign (Volumes I and II)

My Smart Hands

The bath letters and numbers, the parent mentioned,
provides visual and (hands-on-touching) sensory input
for a child, allowing a multi-sensory learning experience.

Many kids with Agenesis of the Corpus Callosum learn
best through the use of multi-sensory teaching methods.
In other words, when they are learning something they
benefit from receiving input to 2 or more of their 5
senses: (See, Hear, Taste, Smell and Touch)

Thank you so much to the parent of a 6 year old child with ACC for your great ideas!

Have a learning tool that YOU want to share on the ACC blog?

Tell me all about it. I'd love to hear from you and so
would a lot of other people, too, who will be able to
see and read all about the learning tools and ideas
that you use with your child who has Agenesis of the
Corpus Callosum.

It is my hope that this section will become an expansive
collection of numerous learning tools (for families to
browse, see and read about) that will offer a variety of
new and inspiring ideas to help their young child, teenager
or grown child in many different areas--from academics, to
fine motor/large motor skills, to sensory issues, to
potty training--and anything else that comes to mind.

Do you have something that you would like to add?


Note: this new topic was inspired by Amanda, the mom of a child with ACC, at Blogging for Beau, where she shares some excellent ideas and fun "Learning Tools".

Minnesota NODCC Regional Gathering - Update!

UPDATE:

Last month (July) in a previous blog post, you read about the August 13, 2011 NODCC Regional Gathering to be held in Minnesota for families who have a member with Agenesis of the Corpus Callosum.

That Regional Gathering took place last weekend. Want to have an inside view?

Well, the event was a huge success and thanks to Amanda Weichers (the NODCC Regional Leader for Iowa, Minnesota and Wisconsin), who wrote and shared all the details and goings on, in her recent article, you get to read and see all about it!

Thank you, Amanda, for allowing me to reprint your article here on the ACC blog for others to read.


"If you build it, they will come."

OK, so a cheesy title but hey it's an Iowa thing. For those who don't know, it's a quote from a movie made here in Iowa; Field of Dreams (Dyersville, IA) with Kevin Costner. It's an oldie but a goodie. Anyways.......That saying held true for me after a successful weekend in Minneapolis, Minnesota. This past weekend I organized an event for the NODCC; a regional gathering for families affected by ACC. I knew from information given to me by the NODCC, that Iowa didn't have many families affected by ACC. If they ARE out there, they just haven't connected with the NODCC and we aren't aware of them. It's a little lonely here in Iowa so I knew I would need to plan the event in a bigger area where more families with ACC were located if I expected to get anyone to attend. I ended up choosing Minneapolis, MN and what a great choice it was!

I arranged for our event to take place at the Radisson by the Mall of America. We were able to get a meeting room there which gave us the view of the huge indoor water park at the hotel; the Waterpark of America. We set the room up with some informational materials and a play area for the kids with some of Beau's toys. We had a buffet style lunch along with some goodies for dessert.

The last ingredient for a successful day was the people! Naturally on the day of our event a main roadway and exit to the hotel was closed, but people still managed to make it through the big city traffic jam. Including our family, we had a total of 11 families there to share in the fun afternoon. Everyone was so friendly and easy to talk to. We were all in the same boat that day. We were complete strangers with one thing in common; ACC. OK, make that two things; ACC and a huge love for our children! We're all in different stages of dealing with the ACC. Some are more willing to talk about it, others not so much; some have young children with ACC, others have grown children with ACC and so on. No matter what, I feel like some great strides were made this weekend. All of the families with the exception of ours, live within miles of each other in Minnesota and they never knew it. They never realized they had a support system right there! How rewarding to see people finding out that they have other families that "understand" so close by.

This is a group shot of all of the families that were in attendance this weekend. What a good looking group!

Topics of conversation included discussion about the IPAD 2 and using it as a teaching tool as well as a communication-like device. Above is a picture of Max's dad, Greg, with their service dog Zadie with Andy and Beau checking out the IPAD 2 that Max uses.

One of my favorite memories of the weekend has to be a friendship that I saw occurring between two young gals with ACC, Jessica, 13 years and Madeline, 12 years. My husband and I both looked at each other late into the day after observing the two girls and both recalled a memory from our trip to the national conference in San Francisco. There were 2 girls that were in their upper teens, that had met through the conferences of the NODCC and had become such great friends over the years. They had ACC in common and they had obviously built a strong relationship as a result. Andy and I both recalled how inseparable they seemed at the conference and how heart warming it was to see them together. We watched the very same thing happening this weekend and I hope their parents don't mind that I shared this story. I just know that as a parent of an ACC child I've heard so many stories about how hard it is for these kids to develop and maintain friendships. I worry so much about Beau not having friends or feeling isolated because he is "different". Watching these young ladies come out of their shells and have such a fun evening made the whole planning of the event completely worthwhile.

One of the other topics that came up (once again thanks to Max!) was the service dog. Max and his dog Zadie were a huge hit this weekend and it was great to see a service dog in action. We have thought quite often about the benefits of a service/seizure alert dog for Beau. Heaven knows it might allow me to get better sleep at night! Below is a great picture of Max, his dad Greg and Zadie.

After our time ended in the conference room, some of the families stuck around and played in the water park. It was another opportunity to talk, play and laugh. Beau loves water, so he had a great time. If you combine that with cute girls, he was in heaven. I think his face in the picture below says it all.

Beau with his new friends from the NODCC gathering.

The next morning we slept in a little bit, trying to recover from our busy day the day before. We decided to visit the Como Park Zoo on our way back home. We met up with the Prusi family at the zoo and enjoyed 2 hours of animal watching and talking about our two young sons with ACC.

Owen, Maren and Beau at the zoo.

Amanda (her husband-Andy) and their son, Beau

I can't thank the great ACC families of Minnesota enough for welcoming our Iowa family to the state. In my mind it was a huge success and each year can only get bigger and better. Next time, you Minnesotans may have to come south and visit the great state of Iowa!

This thing called ACC has brought all of us together; people who never would have met otherwise and for that I'm grateful. I've met some wonderful families not only at this event but when we were in California. Each time we do something like this I feel blessed and re-energized to do more to help those affected by intellectual disabilities.

I will end this with one of my favorite poems. It was written by Edna Massionilla and is titled Heaven's Very Special Child. After meeting such great parents it only seems fitting. The main thing I want to get across by using this poem is that God chooses great people to be the parents of special needs children. We were chosen for a reason and are so lucky.


HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'llknown as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

© article and photos re-printed with permission from the author, Amanda.

view original story


Want to be a part of the next Iowa, Minnesota, Wisconsin
Regional Gatherings?

Contact, Amanda, your NODCC Regional Leader:

Iowa-Minnesota-Wisconsin
Leader: Amanda Weichers
e-mail: amanda@campfirestoriestv.com


Other NODCC Regional Leaders and Contact Info:

Florida
Leader: Vivian Avila
e-mail: vavila@med.miami.edu


Illinois-Missouri
Leaders: Megan Mutti
e-mail: parentpathfinder@gmail.com

Fred and Karen Petelle
e-mail: petellek@att.net


Northern New England (ME, VT, MA & NH)
Leader: Theresa Walker
e-mail: theresawalker@comcast.net
Summer Picnic Regional Gathering to be held on
Saturday, August 26, 2011 from 12:00 (Noon) till 3:00 pm.
Contact Theresa for complete details.


U.S.A. Regional Groups

Region 1 Maine, Vermont, Connecticut, New Hampshire, New York, Massachusetts, Rhode Island, New Jersey

Region 2 Pennsylvania, Ohio, Indiana, Michigan

Region 3 Delaware, Maryland, Washington DC, Virginia, West Virginia, Kentucky, Tennessee, North Carolina

Region 4 South Carolina, Georgia, Florida, Alabama, Mississippi, Louisiana

Region 5 Wisconsin, Minnesota, North Dakota, South Dakota

Region 6 Illinois, Iowa, Missouri, Nebraska, Kansas

Region 7 Arkansas, Oklahoma, Texas, New Mexico

Region 8 Colorado, Utah, Wyoming, Montana

Region 9 Idaho, Oregon, Washington, Alaska

Region 10 Arizona, Nevada, California, Hawaii


Do you want to become an NODCC Regional Leader in your region?

If you have an interest in becoming an NODCC Regional Community Leader for your regional area...

Please read more about the NODCC Family Partnership Programs (FPP) below:

Family Partnership Programs

Sign Up Here

NODCC e-mail: info@nodcc.org

NODCC stands for: National Organization for Disorders of the Corpus Callosum