ACC & Moms-To-Be Story #18

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

On October 12th I received an unexpected e-mail from Elizabeth, who graciously informed me that she would like to share her ACC Pregnancy Story.

With her permission I am including Elizabeth's own words, from her e-mail to me, here for you to read:

"I have been an avid reader of this blog for the past 19 weeks, when my son, Nicolas received his prenatal diagnosis of complete ACC. My husband and I were devastated. We didn't even know what the diagnosis meant, never mind how we were supposed to react. We were scared, ashamed, sad... Reading the stories here helped us to shift our focus to hopeful, strong, and optimistic. Here is my story, so that I can pass along the help that I received here when I needed it the most."

Thank you very much, Elizabeth, for reaching out to other people, for offering hope and for sharing from your heart your son, Nicolas' Story, to help others. It is truly a privilege to be able to post your ACC Pregnancy Story here on the ACC blog and I am eternally grateful to you.

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

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.

Written by Elizabeth

Nicolas' Story

Our journey with Nicolas began in January of 2012. When we found out that we were expecting my husband was terrified. He was 44 and I was 39. Along with our advanced age, I have three children from a previous marriage, and he is a born worrier. He came up with so many “what if” scenarios, that I was almost beginning to regret having decided to try and have a baby together. Somehow, I managed to soothe his worries with my stories about how my other children were born perfect, and that the odds of a problem in the pregnancy were so small, that there was really no reason to even think about them.

At 16 weeks, my doctor had me take a very routine blood test – something called a quad screen. I remembered that with my third pregnancy, I had “failed” this very blood test, had a 1/500 chance of having a Down’s syndrome baby, and been utterly terrified. I warned my husband that this test was very inaccurate, and had a lot of false positive results. That didn’t stop either one of us from being sick over the results that we received. One of my scores was 13.5 times the average result. We had a 1/4 chance of a Down’s baby.

We went for an amniocentesis, which thankfully showed 46 evenly matched chromosomal pairs. Doctors still couldn’t explain my very strange result. Due to “advanced maternal age” and this weird blood screening, it was advised that I have level two sonograms throughout the pregnancy, until they could figure out what was going on. Well, if you look too long for something, you eventually find it.

At my 23 week sonogram, my perinatologist, quite cheerfully announced that something looked “weird with his brain”. After some more scans, he told me that the baby had isolated Agenesis of the Corpus Callosum. He said this with a smile, and then told me it was very serious, and sent me off to the genetic counselor.

I had to call my husband, away for two days at work, to tell him this potentially devastating news. We still didn’t know too much about it, except that the range of outcomes was from asymptomatic to seizures and severe developmental delays. All we could do was hope for the best. We had a fetal MRI which was reviewed by a pediatric neurosurgeon. She confirmed the diagnosis. She recommended that we deal with whatever came our way; and to start by going home to paint the nursery. I found this blog, and read about a lot of great kids, some with tougher roads ahead than others, but all loved and cherished by their families. We decided to become one of those families.

Fast forward to September 27. I am 39 weeks pregnant; and being induced. After a relatively easy and uneventful 8 hour labor, Nicolas decided to be born all at once in 15 minutes. Things got very tense, as his heart rate, which had been stable at around 140 bpm dropped abruptly to 60, then into the 50’s. The neonatologists were already in the delivery room due to Nicolas’ prenatal ACC diagnosis. When he was born blue, silent and still, with his umbilical cord wrapped around his neck and tied in a true knot, they were able to revive him within one minute. While his initial Apgar score was 1, his subsequent ones were 7 and 9. Thank God for that prenatal ACC diagnosis, and the advanced preparation of the neonatologists. After about an hour to bond with his dad and me, he was taken to the NICU for further evaluation. He was delivered back to us within two hours, and since has never been out of our sight.

Other than his ACC diagnosis, and some other possibly related, “garden variety” birth defects (heart murmur and undescended testicle) Nicolas is a perfect baby. I know that he is only two weeks old, and that things may change, but so far every specialist assures us that he looks very likely to develop normally, and to lead a very typical life. He has a cardiologist, and a neurologist. On Monday he will meet his Birth to Three [Early Intervention] team. We expect a urologist in the future. We know that we will have many challenges with our child, and that they may not all be easily met, but already we can’t imagine, or even really remember life without him. His siblings adore him; his grandparents are all on cloud nine. He has brought a real sense of joy to our lives and of completion to our family. He has strengthened the already incredible bonds between my children, my husband and myself. We have a tremendous support system and are confident that we can expect the best possible outcome, no matter what comes our way.

Like I said earlier, I know that we are still only in the beginning of this incredible journey with Nicolas. I know that there are people out there that have lived with ACC, or with their children with ACC that have much more firsthand experience than I do. I just want everyone out there who is receiving their prenatal diagnosis, who is scared, and feeling completely alone and lost, to know that in the long run, the ACC probably doesn’t matter as much as you think.

I will always be sad for Nicolas when he has a particularly difficult challenge to face. I will always wish that he had an easier path, and I will always know that this diagnosis is “unfair” and that he didn’t deserve it. However, I will never forget the joy and relief I felt when I first heard his cry. I will never forget the look of rapture on my husband's face when he turned to me to say that Nicolas was holding his finger so tightly at two minutes old. I will never not love this boy with my whole heart for exactly who he is, not what he has or who he can never be. Children know when they are loved, and they thrive because of it.

-Elizabeth
Mom of Nicolas
October 12, 2012

PS:
Attached is a picture of Nicolas "singing", at nine days old :)

UPDATE: November 1, 2012

"Nicolas, at 5 weeks, is focusing on my face, smiling, and "talking". This after he eavesdropped on a conversation with his [Early Intervention] birth-to-three coordinator, where his dad and I both said that our immediate goal was for Nicolas to be able to bond, make connections, and be a happy, socially functioning part of the family!"

"Nicolas was born on September 27 at 5:06 PM. He weighed in at a puny (for my kids!) 7lbs and 1 oz, and he was only 19 (again - puny!) inches long. He was greeted by ecstatic siblings - 2 brothers 9 and 14 - and a sister 11 - who are convinced that he is going to not only thrive, but be a "super-genius" (their words, not mine!)"

There are many different stories and outcomes of ACC and Moms/Dads-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 E-mail me, (Sandie):
hope@aracnet.com

Want to talk to other moms (and dads) 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/Dads-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/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.

Teacher of Student with ACC shares input

Some parents who have a child with Agenesis of the Corpus Callosum choose to hire a tutor to help their child with certain academic areas that many kids with ACC commonly struggle with (i.e. math, reading/language arts, homework), and they mention that hiring a tutor for their child who has ACC turned out to be a great experience, with positive results.

The other evening I was casually reading an article about tutoring and I couldn't believe my eyes when I actually saw (and then realized) that yes, the teacher/tutor actually just stated in writing that:

"one of my Kindergarten students came in with a rare condition: Agenesis of the Corpus Callosum."

Those words, in an article written by a teacher, are probably even more rare than actually having ACC.

I excitedly, and very eagerly, continued to read all that the Kindergarten teacher, Alexandra Berube, wrote in her article with respect to the details of her experience teaching the student with ACC.

I was immediately captured with her style of tutoring, her passion for teaching and her philosophy of taking cues from the child and shifting gears whenever necessary in an effort to fine tune her methods of teaching to meet the child's style of learning. That is a major key to successful learning for many, many children who have Agenesis of the Corpus Callosum.

As I was reading the article, I quickly had a desire to hopefully reprint the Kindergarten teacher, Ms. Berube's, article here on the ACC blog for others to read. Then (as a mom myself of a child who has ACC), I really, really wished that she might share a little more information about her experience teaching the student who has Agenesis of the Corpus Callosum.

Later that evening I sent off an e-mail to Dr. Alise Holland-Johnson, an educator, professor, professional tutor, author (and owner of the blog where Alexandra's original article appeared), requesting permission to possibly re-print Alexandra's article here on the Agenesis Corpus Callosum blog. I also shared with Dr. Holland-Johnson some of my enthusiatic thoughts and my wish.

I went to bed that evening all giddy, like a little kid waiting for Christmas morning.

The next morning I received an e-mail reply from Dr. Holland-Johnson, who very graciously granted permission for me to re-print the guest blog article written by the Kindergarten teacher, Alexandra Berube, and I also received a second e-mail from Alexandra Berube herself (who I didn't even e-mail). I very quickly discovered that Dr. Holland-Johnson had forwared my e-mail on to Alexandra for her to see.

In her e-mail to me, Alexandra surprised my socks off (and fulfilled my wish) by generously agreeing to write another article and elaborate further about her teaching experience with the student who has ACC. I was (and still am) astonished and grateful and elated all at the same time.

Having the opportunity to receive written input from a teacher who had a student with ACC in her class--and be able to share it here on the blog with you--is incredible!

My sincere thanks and appreciation to Dr. Alise Holland-Johnson and also to the Kindergarten teacher (and tutor), Alexandra Berube, who wrote the article titled: "How to Support a Student with Unique Learning Needs", which you can read below for yourself.

*Alexandra's article below reprinted with permission from Dr. Alicia Holland-Johnson, where it originally appeared as a guest blog posting on her Helping Tutors Become Their Best blog.

How to Support a Student with Unique Learning Needs
By Alexandra Berube, bostontutoringservices.com

Teaching my second year of Kindergarten, one of my students came in with a rare condition: Agenesis of the Corpus Callosum. This is a complete or partial absence of the corpus callosum, the band connecting the two hemispheres in the brain. It was not known how deeply this would affect his development, but his learning would clearly be shaped entirely by his brain’s ability to share, process, and store information.

I should explain that I am not a teacher with a Special Education background--I have a Master’s Degree in Early Childhood Education and I am certified in this field; however, I was not trained to teach students with Special Needs beyond how to incorporate modifications into lesson plans and how to read an IEP. I had worked with students with Asperger’s, Sensory Integration Dysfunction, ADD, ADHD, Dyslexia, and Autism, but never had I had complete responsibility for the education of a student with needs such as these.

This student is now in 3rd grade, and I have had the honor of being able to watch him grow, tutoring him on and off ever since he graduated from my classroom. Tutors are often assigned students to work with, not knowing what to expect, and they are being given the opportunity to test the limits of their creativity and their patience. It is truly an opportunity, a gift, to have this chance to bring out what this child has to offer.

Over the years I have watched this student learn everything backwards. By that I mean, in order to hear a rhyme, he had to be able to read the word first: Do cat and hat rhyme? They both visually end in ‘-at,’ so yes. But he couldn’t hear the rhyme.

He can do multi-digit addition and subtraction, with carrying and borrowing. But he has to count on his fingers, even to subtract 3 from 3. Theoretically, he can’t do math facts in his head at all. Each year, we have retaught him how to add and subtract, and he has several strategies that work for him--he physically ‘catches’ the small number and counts up to the big number to subtract, and ‘catches’ the big number and adds the small number from there for addition. It’s tactile, and that’s how his brain allows him to add and subtract. But it does seem illogical to watch a student add 2 plus 3 on his fingers and then see him add 23,908 to 13,208 with carrying, with ease.

This is not how children are supposed to learn, according to common belief. You are supposed to teach children in a certain order, because that’s how their brain develops. But what if their brain needs to develop a different way? What if their brain makes connections in a completely new and circuitous way, that leaves you, the tutor, baffled time and time again? What if that’s okay?

Tutoring a student who learns differently, for any reason, means shedding your beliefs of what is the right order to teach content. It means not drilling in one concept over and over until they get it, because you think they can’t move onto the next concept until they get this one.

All students learn in leaps and bounds, which may mean skipping over one concept, moving onto the next one, and weaving back around, ‘absorbing’ that ‘previous’ concept into their learning schema long after it logically makes sense for them to do so.

Every student deserves the chance to learn at their own pace, and it takes understanding on the part of the tutor that this may be the right way for them.

About Alexandra Berube

Alexandra is the Managing Director of Boston Tutoring Services, a tutoring company that offers one-to-one in-home tutoring in Massachusetts. She is also a former Kindergarten teacher who also tutors students in grades
K-8, in all subject areas, including test preparation.

Would you like to have a print copy of this article?

Alexandra has given me permission to convert her article to a pdf format, which you can access by clicking on the link below:

How to Support a Student with Unique Learning Needs - printable version

Exciting News!!

Watch for Alexandra's upcoming second article regarding the student she taught (and tutored) who has ACC, which will be posted here on this blog next week.

And, if you can believe it, (I'm still in awe), not only is Alexandra willing to write a second upcoming article--she is also, very generously, willing to write and share several more upcoming guest blog articles here in the near future regarding her teaching and tutoring experiences (from Kindergarten to 3rd Grade) with her student who has ACC!

(With her permission) I'm including something here that Alexandra wrote--in one of her e-mails to me--for you to read:

"I started with him the first day of kindergarten, when he was nonverbal and could make no shapes on paper (so he couldn't even draw a line, or a circle, let alone a letter). I could write about any level of his development from that point until now, in 3rd grade. He's on an IEP but not receiving any services at this time because he doesn't need them--he's on grade-level!"

*Please Note: ACC has a very wide range of effects--ranging anywhere from no symptoms--or mild learning disabilities--to severe mental and/or physical challenges. It can sometimes also be seen with other medical conditions, genetic syndromes, chromosomal anomalies and more. Every person with ACC can present differently in terms of their development, cognitive abilities and educational needs.

Each child who has ACC is a unique individual with their own abilities, weaknesses, challenges, motivations, strengths as well as their own style of learning.

ACC & Moms-To-Be Story #17

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

I received an e-mail from Rossella, a mother who lives in Italy who has a young daughter with ACC.

In her e-mail she wrote:

"I am sharing below my pregnancy experience and these first years with Teresa. I know that there is a group with pregnancy stories, feel free to share my story as well. I would be happy if my story can help or inspire other parents."

The mother, Rossella, is very actively involved in the Italian ACC forum (a wonderful group) that branched out to form a voluntary non-profit organization in 2011 called Associazione Anomalie Corpo Calloso Italia, also found on Facebook, and they just recently held their very first Conference in Italy in September of 2012.

Thank you very much, Rossella, for reaching out to other people and for offering hope. It is wonderful to hear from you all the way from Italy, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read.

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

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.

Written by Rossella

Teresa’s Story

I had a relatively quiet pregnancy. I am a United Nations worker and while expecting Teresa I was serving in Congo (Drc) and then in Haiti. So I was healthy and feeling well most of the time and working almost as usual.

When I was 33 weeks pregnant, I started to have strong contractions. I went to my doctor and for the first time he realized that Teresa’s ventricles (I hope the term in English is right!), were too big and he suspected Hydrocephalus. I immediately came back to Italy and had additional check up which confirmed the Hydrocephalus and a suspected ACC. I went through a Fetal MRI scan and the ACC was confirmed. To this day I am sure that the Hydrocephalus is a consequence of the ACC and that all that liquid just took the empty space of the CC [corpus callosum]. Anyway, I was closely monitored and by week 37 Teresa’s ventricles were 27mm. quite big so they decided to go for a C-section as Teresa needed an emergency surgery.

Teresa was born on November 12th 2009 and after two days she underwent her first surgery. I remember the day of the surgery when she came out of the operating room, she was awake, with her head wrapped in a big bandage, she was not crying, she stayed strong. This was moment when Teresa was born to me as a mother, when I promised her I would always stay strong for her.

I have to admit that those first weeks have been the most difficult moment of my life so far. When Teresa was diagnosed ACC and Hydrocepahlus a few doctors told me that she would be severely handicapped and that she could possibly not even recognize me. One doctor suggested I go to UK for abortion
(I was 8 months pregnant!). This was devastating for me as we were not expecting this and as you can imagine those first few days, both me and my husband, Miguel, went first through denial (maybe they made a mistake) then despair and finally we started to accept it. I remember very well that one day my husband, Miguel, told me:

“Imagine if we have Teresa and she is ok, without ACC and without Hydrocephalus, imagine that one day she has a car accident and she becomes paralysed or worse, what would you do then? Abandon her? Throw her away?. So, we will welcome her, we will love her, she is our daughter and we will take her as she is.”

That is how we have lived so far.

Teresa is almost three years old and she is a cheerful and always smiling little girl.

Since she was three months old we realized that she had some delays. She would not maintain her head up and would only look to her right side. We started therapy, first at home and since she was 6 months at a therapy center. She started to sit on her own at 9 months, walked with support at 18 months and walked alone at 22 months. We had a lot of difficulties with mastication (chewing food) and she first ate a biscuit on her own when she was 20 months old. In the meantime we had another baby, a boy, and I am sure that his presence has helped Teresa tremendously. She picked up her first biscuit when her brother 5 months started himself, she saw him and wanted to try. Now at 34 months she eats on her own both with a spoon and with a fork, she eats everything!

Since she was two she started to attend a kindergarten and the presence of other children have highly benefited her.

Her main difficulties remain in her “social” skills and in the speech. She only says a few words, though she makes herself understood with gestures, and sometimes she gets very frustrated for this. She seeks the company of adults as I am sure she is not able to relate to children and she is not able to communicate with them. When other children take/pull toys from her hands she is not able to defend herself, and also with her brother I have seen now that she reacts after a few minutes, not on the spot.

She likes music, dancing and singing and I have realized that if I want her to do something and she does not get it I have to sing it to her.

She goes slowly in her learning process but I would say steady. I can also say that sometimes she remains stuck for a while and then all of a sudden she makes a big step.

Like for months she was walking with a support and then one day, all of sudden I went to pick her up at therapy and she was walking on her own!

She is a cheerful girl, she is very independent in the house and she can play on her own or also engage the adults to play with her. I leave her some “quiet” time, when she can be on her own without too many inputs (school therapy etc) and we have realized that in these moments she invents her games like all children, she plays with her doll (puts her to bed, or she pretends she is on the phone) she imitates the adults like all children.

I attach a couple of pictures, so you can see her. She is the joy of our life.

2 1/2 year old Teresa

Teresa almost 3 years old

Rossella
Mother of Teresa
Italy

There are many different stories and outcomes of ACC and Moms/Dads-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 E-mail me, (Sandie):
hope@aracnet.com

Want to talk to other moms (and dads) 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/Dads-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/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.

Communication - input from parents

The topic of speech-verbal language (or lack thereof), in some children who have ACC, comes up often by concerned parents in the ACC support groups.

Sometimes I discover that there are hidden gems of information buried in some of the larger ACC documents that have been posted on this blog. So, today I decided to revive this buried treasure (found in the ACC-Reading and Comprehension document) involving communication and kids who have ACC.

Below are some of the comments, written by parents of kids with ACC, regarding the topic of verbal language.

First parent writes:

"As a baby Abbie didn't babble. She was a very serious baby. At about age 2 she went from virtually no speech, apart from a few single words and their varied mutations, to almost full sentences. She'd obviously been listening and observing."

Second parent writes:

"Lexie never babbled either. No mamamama or bababababa. Also, she never said uh-oh like all other babies. Same goes with what does a cow say...."mooooo" Nope! She, too, was a very serious baby. At age 2 she had virtually NO words. Then suddenly, somewhere after 2, she began talking. I would not say full sentences over night, but to us it was drastic!"

Third parent writes:

"Ryan started speech therapy at 15 months old. For three long months, once a week, his therapist would go over the signs 'more, all done, open' and maybe 3 or 4 other ones. He couldn't care less! He never seemed to be looking at our hands (of course I kept trying to teach him)... he had lots of fun playing with her, but didn't pick up on the sign thing AT ALL!

At 18 months we were on vacation in Ireland, when his daddy realized he forgot the video camera in the car. So he went to get it. While he was gone, I was tickling and picking up Ryan for about five minutes. Then I stopped. Then we looked at each other and he signed "more". I screamed 'what'? And he did it over and over and over again. Just in time for the video camera! By the end of our two week vacation, he was signing more, all done and open. The amazing part is that it really seemed like he never paid attn to the therapist and to me for the three months we tried to teach him those signs!

Luckily he got kicked out of speech therapy at three yrs old when he said his first 10 word sentence. Speech has never been an issue again."

Fourth parent writes:

"I had worked with him [my son] for one whole year trying to teach him how to say the word "bye bye". We flew to Hawaii and were waiting for our connecting flight to Maui. My husband went outside for something and out of the clear blue tropical sky I heard Matthew say "buh bye" and I nearly did a little dance...the kind of I can't believe he just SAID it dance. My husband was gone and couldn't hear this wonderful new first word that our SEVEN year old child just said. I grabbed my cell phone and called my mom (as Matthew was still saying "buh bye"..."buh bye") and I got her answering machine. I put the phone up to Matthew's mouth and he SAID "buh bye" a few times. My mom heard it later and kept it on her answering machine for years.

While Matthew is still non-verbal with only a handful of words...I continue to help him with speech because he makes a lot of sounds and is trying hard to put simple words together even though he doesn't know he's doing it. I hear him sometimes out of the blue say a word while he is watching TV. For example, he saw a baby on TV and said "bay-bee" clear as day without any problem. I will never give up on him talking and will continue to work with him and believe in all of the things that he is capable of doing no matter how old he is or what anyone else thinks."

Fifth parent (of 16 year old child) writes:

"My son William had a list of things (an entire page long) we were told he "would never do." REALLY? He was 3 years old when we received this list from our "doctor". At 3, he spoke 5 words that were understandable (mama, dada, jojo, baba, & more). His speech was defined as "largely unintelligible sentences" for *MANY* years. Meaning, we were the only ones who truly understood him....that was from age *3* to age ?? (sorry I lost track... but it was a LONG time).

Well, let me tell you what a difference 13 years of advocating for speech services can make...I CANNOT keep him quiet now...he pretty much NEVER shuts up (and I say that with TOTAL LOVE in my heart) and he is *completely* *understandable*. He talks "a mile a minute!" There is NO misunderstanding him now!! He is even described by his teachers as very polite and social. He has no problems with his socialization skills.

Oh yeah one more thing, about that list we received when William was 3 years old...I'm elated to say, he does everything on that list and much more, with ONE exception....he still cannot read, but he will (I have Faith)...and as GOD is my witness, if it is the *VERY* last thing we teach him...HE WILL READ."

ADDITIONAL STORIES FROM PARENTS:

Sixth parent writes:

"My eleven year old son who has complete acc has no problems with his speech per se and never has, he has always passed the milestones like an average child. He can read but it has taken longer, he is at the stage of reading slowly and in a monotone voice, has yet to read with intonation or inflection in his voice. I know this will come with time.

He does sometimes have trouble with his 'train of thought' when trying to relay something to me, he needs extra time and hates to be interrupted, which is understandable.

Otherwise , his communication skills are pretty 'normal' for his age."

Seventh parent writes:

"JM is 4 years old (full ACC), he still speaks no word, just makes some sounds like "tetetete."

However, we realize that he understands and makes requests through some gestures. The hearing test showed hearing perfection.

We continue to stimulate speech, we believe that it will come. At the same time, we will start using alternative communication."

Eighth parent writes:

"Our daughter started babbling dada and mama at 4 months. She was quick to add to her vocabulary list and by one year she had about 25 words. We noticed from an early age that she listened and responded to music in a way that was almost magical. She would seemingly concentrate on the words while the music inspired her to move and dance. She is still rather musically inspired and her concentration while listening to music has transferred to her concentration of listening to language.

She is now 2 1/2 and she speaks in full sentences with near perfect enunciation. She isn't necessarily slow when speaking, but mindful of saying each word properly. When comparing speech to her older sister, my younger daughter has a much more developed vocabulary at her age. (Of course having a sibling close in age undoubtedly helps.)

She also has playful voices for when she's silly, or a "scary monster." She sings songs and can recite nursery rhymes. We feel her grasp of language is more "advanced" than her sisters was when she was her age.

We found out that she was put together "extra specially" while I was pregnant. The doctors prepared us for very involved disabilities with little hope for a bright future. I know there are lots of children with ACC that are mildly affected if at all but we just never heard about those children when we started to learn about ACC. Our daughter has had very typical development and has even been ahead in some areas."

Ninth parent writes:

"I can respond to the delay in talking....My son is 13 years old and was diagnosed with partial acc when he was 9 months old. He received much therapy while he was young (until about 10 years old). He learned to walk at 22 months and communicated his first true interactive word through signing at 24 months. We were told back then that children typically learn to walk before they talk. This held true for my son. He quickly moved from signing to babbling, to words--all while in speech therapy. He was speaking by three years old and remained in speech for articulation issues until he was about 5. He continued with speech therapy (with a few extended breaks) until he was 10 years old to deal with using language for social interactions."

Would you like to include your input about your child who has ACC and communication? Please e-mail me your story and I will gladly post it here on this page.

I welcome and encourage you to share your own comments.

For more information about Agenesis of the Corpus Callosum and speech therapy, check out the document below, which was presented at the 2004 ACC Conference.

Speech & Language Issues Associated with ACC - by JoAnn Tully, MS-SLP

*Note: JoAnn Tully is the mother of a grown daughter who has ACC and is also a Speech-Language Pathologist.

KNOWING ALEX: Life with Agenesis of the Corpus Callosum

This morning, as I was checking my e-mail, I discovered a note to all members of the ACC Listserv--(an Agenesis of the Corpus Callosum e-mail support group that I belong to). This particular e-mail, with a subject line: "Growing up with ACC", put a big smile on my face as I read it, and I couldn't get this blog post up fast enough to share with you here--not to mention get my own hands on a copy of the exciting, new e-book (electronic book).

With his permission, here is the e-mail--directly from him, with the surprising news that I just received, so you can read it for yourself:

"Hi,
My name is Alex Reisenauer I’m 24 yrs old with c-acc. My family joined this list a long time ago and this is my first time posting. After years of thinking about writing a book about what it’s been like to live with ACC and wanting to bring greater awareness about the condition to increase understanding, this month my book, KNOWING ALEX Life with Agenesis of the Corpus Callosum, has come out. I guess you can say it’s taken a life time to write. It’s co-authored by my mother, Cindy and tells how ACC has affected our lives. I have included the description of the book.

BookDescription
Publication Date: September 1, 2012

‘On the day their son was born Rich and Cindy Reisenauer were advised to institutionalize him. Alex had been diagnosed with frightening and unpredictable condition with the indecipherable name of Agenesis of the Corpus Callosum. Simply put, Alex was missing an integral portion of his brain—the band of nerve fibers that connects the two hemispheres.

The Reisenauers chose to take their newborn home to join his two brothers, and face the daily hardships and minor miracles of life with AgCC as a family. Every aspect of Alex’s condition presented developmental, medical, social, educational and vocational challenges. Hard fought for successes highlight his life of achievement.’

Right now its an ebook available at the following retailers: Amazon Kindle,
Apple iBookstore (for iPad), *requires free iBooks app to view.
Barnes & Noble Nook,
Kobo, Copia and Gardners. It will soon be available at Baker & Taylor and Reader (Sony Reader). A print version should be available soon.

Mine is just one story. I hope as awareness for the condition grows more and more stories will be told until ACC is as familiar and understood by the outside world as other conditions like Autism.
Thank you for reading."
Alex
24 c-acc  [c-acc=complete agenesis of the corpus callosum]

Would you like to know more about the new e-book titled: KNOWING ALEX: Life with Agenesis of the Corpus Callosum, co-authored by Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer?

Well, go ahead and have a look inside the book, where you can view the table of contents as well as read an excerpt.

UPDATE:
If you don't have a Kindle, or other type of e-reader device, but still want to get the e-book and read it--You Can. The e-book is available to read on your computer.

Just download the free Kindle for PC or free Kindle for Mac to your computer. That free download will then allow you to purchase the e-book, KNOWING ALEX: Life with Agenesis of the Corpus Callosum, and have it delivered directly to your computer, for your reading pleasure.

Plus, you can also download other Free Kindle Reading Apps for Kindle Cloud Reader, Smartphones, and Tablets (i.e. iPad & Android Tablet). You don't need to own a Kindle device to read Kindle books.

Wow! I am excited to know that there is a book of this quality, and in-depth information, available that speaks directly about the diagnosis of ACC, and makes it incredibly personal, coming from the perspectives and viewpoints of a mother (and son-who has ACC) team!

Huge congratulations to both of you, Alex and Cindy, on your new book. I can already tell that this book will speak to so many people who read it....from parents who have a child with ACC, to teachers/school staff, tutors, to adults who have ACC, to new parents-to-be who are expecting a baby with ACC, as well as doctors and other professionals and more.

As a parent myself of an 18-year-old son, who is completely missing his corpus callosum, (and as someone who is currently reading KNOWING ALEX: Life with Agenesis of the Corpus Callosum, while nodding my head and relating to much of the story), I am certain that this book will be monumental and instrumental in creating a much-needed greater awareness of Agenesis of the Corpus Callosum, a condition that deserves to be better understood and recognized for the sake of the many people who's lives are affected (in a variety of differing ways) on a daily basis.

Back to School - ACC documents

Kids and school and Agenesis of the Corpus Callosum.

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



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

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

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


ACC EDUCATIONAL INFO:

Educational Suggestions For Children With ACC
great information written by Kathy Schilmoeller, Ph.D., who is also the parent of a grown son with ACC.


“Considerations For Educators Of Students With ACC”:
Mr. McCallum wrote this document. He is a teacher
who taught a child with ACC in his classroom. He
offers detailed and valuable information.

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

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

Please feel free to also include any specific challenges and areas of concern that your child/student is experiencing.


The ABC's of ACC - printable version

ACC Reading and Comprehension

Handwriting Help

ACC: Social Skills & Challenges

Neuropsychological Evaluation

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

ACC: Learning Colors - printable version

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

Teaching Resources

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

Disorders of the Corpus Callosum Brochure: English

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

ACC & Dads-To-Be Pregnancy Story #16

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

I received an e-mail last month with the subject line: "ACC Pregnancy Story", that said:

"I would like to share Caleb’s story, although I am a dad, not a mom."

I don't know if you noticed that the title of this story is
"ACC & Dads-To-Be", which is a first.

This is the first ACC Pregnancy Story written by a Father and I hope that it will pave the way for other Dads out there who would like to tell their own story about having a baby with ACC.

I am very grateful to be able to include Rodney's ACC Pregnancy Story here.

Each story is as unique as each child who has ACC. And this story is uniquely told from a Father's perspective.

I believe in my heart that every story told will ultimately reach out and touch the life of someone else in very special ways.

Thank you very much, Rodney. It is wonderful to hear from a Father, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read. Thank you for reaching out to other people and for offering hope. I want to extend my heartfelt thanks to you, Rodney, for your willingness to express your ACC Pregnancy Story in words (and beautiful pictures) and for coming forward as the other half of the pregnancy team, who is just as deeply affected and involved.

Written by Rodney

Caleb’s Story

For the past year, anytime I have thought of my son’s birth, I begin to tear up. It was by far the most wonderful and terrifying experience of my life. The initial shock has finally begun to fade, but the experience has changed my wife and I’s lives forever. We did not discover Caleb’s complete agenesis of the corpus callosum until a few days after he was born and after reading many of your stories about discovering it prenatally, I am very thankful we did not know until after he was born (although I can’t say I felt the same way at that time).

My wife Katie and I originally did not want to have kids. However, we both began to feel the need for something more out of life and decided in our early 30’s to have a child. It took only two weeks of trying and she was pregnant. We couldn’t keep the news from either of our families very long as we were both extremely excited. We took a birthing class and my wife made out a detailed birth plan. Absolutely nothing went according to her plan. Her labor was long and painful, likely in part due to Caleb being turned face up. My wife’s doctor never showed. Fortunately, we did have a very good nurse with us. A hospital physician showed up at the very end of her labor to deliver Caleb. Caleb was born at 3 in the morning with a head full of hair and a grimacing cry. We immediately noticed his midline cleft lip, but I did not realize it was abnormal at the time. He also had a very broad nose. I cut his umbilical cord and his mom got to hold him for a few moments before a nurse commented that she didn’t like the way he was breathing. She took him to a table on the other side of the room to do his APGAR testing. The doctor assured us not to worry that if the nurses were concerned there would be an entire team of specialists in the room. Moments later, there was an entire team of specialists in the room. I watched our son gasping and fighting for each breath. His color turned from a bluish pink to a purple. When they rushed him to the Neonatal ICU, I got Katie’s mother from the waiting room to stay with her while my mother and I went to ICU.

When we got to ICU there were several nurses and specialists hovering over Caleb, monitoring his breathing, giving him oxygen and waiting for the doctor to arrive. I remembered one thing from our weeks of birthing classes that came in handy. The teacher had once said to the dads that if there was something wrong with your baby, that the dads needed to talk to their babies, that if they couldn’t touch or hold their babies that they needed to talk to them and sing to them while the doctors worked on them. So I talked to him and sang to him. I’m not exactly the type to sing in public, but I sang to him. I sang some Johnny Cash and Jimmy Buffett, not really because I liked the songs, but because I knew the words and it’s what came to mind at the time. I’m not sure what it did for Caleb, but it helped me.

           Caleb in hospital after he was born

The neonatal physician arrived who ironically is our neighbor. He had originally told me that he hoped he didn’t see us at the hospital because that meant something was wrong, so I rightly told him I was not glad to see him. After an x-ray, the doctor told me that Caleb had a pneumothorax, which is basically a collapsed lung. He performed a pneumothoracentisis (stuck a needle in his lung) to allow for the air on the outside of the lung to escape. He then put Caleb on a CPAP and Caleb began to breathe much easier. Katie finally made it to ICU at this point. She started to cry seeing him with the CPAP and various monitoring instruments attached to him but I assured her that he was doing much better than he was. We had a hard time leaving him there, but we were told it was shift change and we had to leave. We were all exhausted, but I couldn’t go to sleep not knowing someone I trusted was with him and my mother volunteered to stay with him, which I am eternally grateful for as I know she was exhausted as I was. We returned to our room at mother/baby, where just kind of fell apart. We held each other, cried and fell asleep for a couple of hours.

The next day a geneticist came by to see us and Caleb, which we all thought to be odd, but he explained that it was routine due to Caleb’s cleft lip and that he wasn’t looking for anything in particular. He ordered a series of tests including an echocardiogram of his heart and an ultrasound of his brain and kidneys. Also, an ear, nose and throat specialist came to see us and told us that Caleb had unilateral choanal atresia (a blocked nasal passage) and laryngomalacia. He thought that Caleb would grow out of the laryngomalacia, but that the choanal atresia would likely require surgery at a later date (maybe 6 months). Caleb was off the CPAP by the next day.

At the end of the 2nd day we were evicted from our room on the mother/baby unit, so we started sleeping in an ICU sleep room, which is a closet with a cot. On the fifth day, Caleb graduated to a sleeper room in ICU, where the parent’s have a bed and a couch and get to sleep in the same room with him. We thought we were getting close to being able to leave the hospital at this point. The nurses started talking about taking him in for an MRI. We asked “Why is he getting an MRI?” He already had an ultrasound of the brain, so we thought it was a genuine mistake. A nurse practitioner then told us that Caleb had complete agenesis of the corpus callosum (c-ACC). She explained that she wasn’t really the person to explain it to us, but that he would likely be developmentally delayed and have significant mental deficits. We were crushed again. I think the next 24 hours were the darkest we had ever known. Our child was missing a major part of his brain, what else were we left to think. The next day the geneticist came back and gave us a lot of comforting news. He indicated that Caleb’s cleft lip, broad nose, slightly wide spaced eyes, choanal atresia and ACC were a collective set of symptoms that fit the genetic disorder frontalnasal dysplacia. He indicated that Caleb would more than likely only have some slight developmental delays and/or learning disabilities and that time would tell more. After 7 days in the hospital, we gratefully came home.

Caleb right before we left the hospital

Caleb had surgery to repair his cleft lip at 6 months of age at Scottish Rite in Atlanta, GA. He (and us) had a few miserable days after the surgery, but he recovered very quickly. From a follow up visit with the ENT, he thankfully will not require surgery to fix his nasal passages.

              Caleb at 6 months old in hospital for cleft lip repair

He turned one year old in June and to this point has developed as a normal little boy. He started walking just a few weeks ago and has recently started saying the word “car”. He’s just a happy little boy and the light of our lives.

              Our Family (Dad-Rodney, Caleb, Mom-Katie)

I would like to add that I am so very thankful that we had good insurance and were able to give him the care he needed when he needed it. There are many in this world that are not as fortunate. I would like to recommend giving to the charity “Operation Smile” at www.operationsmile.org. Operation Smile sends doctors around the world to perform cleft lip/palate repair surgeries and is a charity that is close to our heart for what they do, they change people’s lives.

                                     1 year old Caleb

Rodney
Father of Caleb
August 17, 2012

There are many different stories and outcomes of ACC and Moms/Dads-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 E-mail me, (Sandie):
hope@aracnet.com

Want to talk to other moms (and dads) 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/Dads-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/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.