Monday, May 6, 2013

baby babble - BONANZA!


What do you do when you have a teenage non-verbal child, who has Agenesis of the Corpus Callosum, who begins to babble and jabber (the beginning sounds and word approximations that are typically made by a baby/toddler) ?

Well, after you get over the amazement of hearing this new development taking place before your eyes and ears (many years after the typical speech timeline)...you roll with it (despite their age) and you encourage them to keep making sounds, you help them to put sounds together, and you might also want to consider seeking the help of a trained speech language pathologist, who can support your endeavor to teach your teen or older child to learn to produce sounds and verbally speak for the first time.

When my son, Matthew, was a baby and toddler, he didn't really babble or baby talk, and he didn't make very many sounds. He received speech therapy but when it became apparent that he needed an alternate way to communicate, we began working on using sign language and augmentative communication, (which we still continue to use and encourage).

However, I still always worked with and encouraged my son to 'talk' verbally by becoming his mirror (sitting directly in front of him making different sounds very slowly using my mouth and allowing him to watch me--hoping he would attempt to mimic me).

He rarely made a sound and would simply, but very intently, watch my mouth. He also loved to watch his own mouth in a mirror and he would make faces while engaging in mirror mouth play, which amused him greatly.

At age 7 he said his first word, "buh-bye", after he and I had worked on it together for almost the entire school year.

He also took his first steps at age 7, which I was told, by his developmental team at the Children's Hospital, defied the textbook odds!

Getting back to the babbling, which is something that my son has been doing for awhile now.

I have been looking for ways to work with him to develop/enhance his verbal speech and help him hone those delightful sounds, he is making, into words, which he is actually already beginning to do a little bit.

For example, he has learned to SAY: "puppy", "bubble", "papa", and he is trying hard to say other words such as: BALL, BOWL, BABY.

He is also (with my encouragement) making the first sound of a word (using his mouth)--even though he isn't able to speak the entire word. If he knows the "sign" for the word, he will sign the word (using sign language)...and then I will smile and say "yes" but will still encourage him to also SAY the first letter sound of that word, with his mouth.

For example: we will work on the word MILK and he will sign the word for "milk" when I say it, but I will help him to try to SAY the "M" sound "mmmmmmm" and he will repeat it, "mmmmmmm".

For some words, he will try to verbally speak the entire word, which may sometimes sound very close to the word (the actual sounds--and even the correct number of syllables) or may not--but he is trying and I am encouraging, and celebrating, each and every effort on his part.

I am impressed, thrilled, elated, jumping for joy and although I don't know if he will some day advance to verbal speech, I won't let that stop me from trying, trying, trying, enthusiastically encouraging him, and hoping.

I tell my son that I love that he is talking to me. I also tell him numerous times, as often as possible, with a big smile on my face, and and an outpouring of encouragement from my heart...

"You are talking", "I love it when you talk to me", "Tell me more"...

And he replies back with beautiful babbling stories and important things he wants to tell me.

It's not just me and his dad noticing this big bonanza of sounds, and long-winded babbling, taking place. He is also babbling out in public, at his hairdresser's, at the grocery store and anywhere else he feels the urge to express himself.

Sometimes he babbles a variety of sounds in a very long string of quick jabber that (as his mother) I know perfectly well HE knows what he's saying--even if the rest of us aren't quite sure.

Some of his babbling is definitely playing with sounds and exploring, but sometimes he will get in front of my face, seeking my attention, and he will try very hard to verbally tell me something. His speech pattern will slow way down and you can see him thinking as he very slowly produces what's on his mind, using a variety of sounds and careful movements of his mouth. I wish I knew what he was saying (and sometimes I do--simply because I know him and I know what he wants or what he is asking to do--like play games, music and videos on the computer, etc).

Several days ago I stumbled upon a blog that has been a Godsend! Thanks to Tori, Jake's Mama and author of Jake's Journey to be a Little Man, I discovered the exact tools that I have been desiring/looking for, that perfectly match my son's learning style, when it comes to watching mouths in the mirror and viewing videos of mouths making sounds, to help promote verbal speech.

After carefully considering and exploring the different products, I chose to purchase the following VAST speech "apps" in itunes, created by SpeakinMotion, for my son to use on his iPad2:

VAST (Video Assisted Speech Technology) is created for use on the iPhone, iPad and iPod Touch.

click to view a video sample of VAST Autism 1-Core below:

VAST Autism 1 - Core (also available in Spanish)

and

VAST Pre-Speech Oral Motor

They were an instant hit with Matthew and with Matthew's Mama, too!

He grabbed the iPad and began staring at each close-up video of a mouth moving making a sound or a word, and intently watched, then tried saying the sound or moving his mouth, then looked up at me for a dose of Mama make the sound for me, and went right back to his video mouth-watching on his iPad!

At 19 years of age, my son is bursting forth with babble, making a variety of bilabial sounds (consonant sounds using both lips: "m" "p", "b") and is also making some alveolar sounds (consonant sounds made by the tip of the tongue against the superior alveolar ridge [on the roof of your mouth, just behind your upper front teeth]: "n", "t", "d", "s", "z"). And, I will continue to help his babbling blossom into the beautiful potential inside of him.

The moral of this story is:

Don't ever give up hope, or think it's too late for your child to learn something new developmentally or educationally, despite their age.


The VAST apps are discounted 20% now through May 15, 2013 (just a few more days) in honor of their "Autism and Stroke Awareness Matters campaign."


Websites below:
(that I found helpful in my exploration)

Proactive Speech-ipad technology for non-verbal individuals with autism

Consonantly Speaking-SpeakinMotion Application Reviews
This is an Speech-Language Pathologist's detailed reviews about some of the VAST "apps". Please note that her review is from March, 2013 and the giveaway is now closed. However, her review is quite helpful and informative.

Jake's Journey to be a Little Man-Vast Autism 1 Core
Thank you Jake's Mama, Tori, for your wonderfully helpful and very informative website, which led me to learn about the VAST speech apps! ♥

I welcome and encourage all of your comments.

And, if you use a specific speech "app" (or other speech therapy tool) with your child/loved one and find it helpful, please mention it specifically by name, and feel free to give as many details as you are comfortable sharing, in your comment.


disclaimer:
I did not receive any monetary compensation from the company who sells the products mentioned here. I purchased the VAST "apps" (at my own out-of-pocket expense) as a tool to help encourage verbal sounds/speech in my child who has agenesis of the corpus callosum.

Tuesday, April 16, 2013

Baby Steps


He pauses, carefully considering the uneven earth beneath his feet. He steadies himself then slowly, carefully, deliberately lifts one foot and takes that first step. A grin spreads across his face and he glances up at me, clearly relishing his accomplishment and my (unabashedly giddy) claps and cheers. Another step, this one faster and less cautious, then another, and another… until he is half-running, half-falling towards me. He reaches my arms just as his balance gives way completely, and he falls into my embrace. “Good job, Zeke! You did it!” I tell him, but he is already off with some new adventure in mind. It was only a few feet really, a handful of steps, but he and I are on top of the world.

He falls a lot, gets back up, tries again. And again. And again. Sometimes he makes it several steps in a row, sometimes just one. Sometimes he lands hard and it hurts (balance and protective response-aka catching himself- do not come easily for this guy), but he is undaunted.

All the while I watch him exploring the ever-widening world around him and I am amazed at his perseverance and resilience. Every worry I have ever had for him, every tear I have cried wondering what his future will hold fades for the moment as I am reminded again how strong he is. Some would say stubborn. I think I have said it too. This kid is going places, and he’s not letting anyone or anything stop him. Maybe he will take a different path to get there. Maybe it will take him longer, maybe it will be harder, maybe he will have to get back up more often than most. Maybe “there” won’t exactly fit our culture’s skewed definition of success. But he’ll get where he’s going, of that I am sure. One step at a time.

I wonder sometimes how much I should write about Zeke’s development. I waiver back and forth between wanting to keep much of his story private, and wanting to shout from the rooftops how amazingly awesome my kid is. I compromise by choosing to write mostly about our ordinary, every day lives together (because really, we are quite ordinary). I don’t want him to be defined as “that kid with Agenesis of the Corpus Callosum,” with all of the stereotypes that may entail, but I also don’t want him to ever feel that who he is is anything to be ashamed of or keep hidden. In many ways I am quite fascinated by the way his brain works and it’s ability to overcome tremendous challenges. Each accomplishment seems all the more amazing when I pause to consider everything it took to get there. My hope is always that people read my words, and see my pictures, and are inspired and encouraged (as I am likewise inspired and encouraged by the emails and comments I receive every week from individuals who either have ACC themselves or know someone who does), but I am also well aware that ACC can look very different for others than it does for my son. We are blessed. And I don’t ever take that for granted or lightly. Ever.

With that being said, I do want to include a bit of an update. I know how valuable it has been to me as a mother to read about other families on this journey with us, and I think it is important to include some of our struggles in this story along with the overwhelming good. At 17 months, Zeke is doing quite well. He is eligible for Arkansas’s early intervention program, which provides him with two physical therapy sessions per week. At PT [physical therapy] he is continuing to work on skills like transitioning from sitting to standing, balance, increasing muscle tone, increasing his protective response, and beginning to walk. (He wears small foot braces that are basically inserts that fit into his shoes to help stabilize his ankles) He is making slow, but very steady progress in all of these areas. He seems to have a somewhat decreased awareness of his left side, probably related to his ACC, but it is more noticeable some times than others. For example, he has more difficulty catching himself if he falls to the left, and he occasionally seems to forget about objects in his left hand. He also seems to have a somewhat increased tolerance to pain, but that may just be his stubbornness! Although he picked up his first couple of words pretty early on (mama, baba, bye-bye), his speech has plateaued at this point and he really only uses a couple of words, and even those not consistently. He has been referred by his physical therapist to be evaluated for speech and occupational therapy in addition to PT.

For every thing that he struggles with though, there are so many other things that he can do. He stacks blocks, puts them in and takes them out of a bucket, gives (very slobbery) kisses, loves to share his snacks and toys, makes some pretty awesome truck noises, “dances” to music, taps out a pretty decent rhythm on his bongos or the piano, looks at picture books, chases the kitties, lights up the room with his
whole-face smile, climbs, climbs some more, oh, and did I mention he climbs?

But today, oh those early wobbly baby steps! They eclipse everything else. Never lose that determination, my son!



reprinted with permission from Jodean, the author as well as Zeke's Mama, who I believe would embrace all of your comments and thoughts.

Jodean's contact information can be found at Crazy Wonderful Life, where this very heartfelt article originally appeared.

Thursday, March 28, 2013

Teacher of ACC Student - Teaching Multiplication through Skip-Counting

Alexandra Berube is a former Kindergarten teacher, who taught a student with Agenesis of the Corpus Callosum in her Kindergarten class (and she also tutors the student). The student is currently in a regular 3rd grade mainstream class.

Alexandra has written several guest blog articles about her teaching experiences with her student who has Agenesis of the Corpus Callosum. Her article today is about teaching multiplication using skip counting.

You may like to view a previous article, written by Alexandra last year, regarding Introducing Multiplication to her student with ACC.

Math is an abstract subject that many kids who have Agenesis of the Corpus Callosum find very challenging.



*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.


GUEST BLOG POST


Teaching Multiplication through Skip-Counting to a Student with Special Needs
by Alexandra Berube, bostontutoringservices.com


I have a student with a rare condition: Agenesis of the Corpus Callosum (a complete or partial absence of the corpus callosum, the band connecting the two hemispheres in the brain). He struggles with mental math and memorizing facts, and benefits from a more visual and tactile approach. I don't specifically use Touch Math with him, but I do incorporate those concepts. Multiplication through memorization tends to be the main way that students are taught nowadays. They are given drill after drill, hoping that rote memorization will be enough to keep the facts grounded into their heads. But what if they don't understand why they're multiplying, and what multiplication really means?

It is very important to me that my students understand why a math concept works. I introduced multiplication to this student by expanding on what he knew about addition. If we have two of something, and then we have two groups of those, then we have 2×2. He adapted to the concept of multiplication very quickly, but it's another thing to then be able to multiply larger products.

We practiced with skip counting, the concept of 'counting-by,' such as counting by twos (2, 4, 6, 8). If we had one 2, and then we had another 2, we would have two 2s. If we added another 2, we would have three 2s. This looks like 2×2, 2×3, etc. We connected each sum to the concept of multiplication, until he grasped that counting by 2s would give him the multiples of two.

We then worked on 5s, because it's just easy for kids to count by five, and they've been practicing since kindergarten. Then he knew the multiples of five. Next came three, but that was harder for him. He's getting used to the multiples of three enough to memorize them somewhat, but what he tends to do is start at one number, count up three to the next number, and so on, using his fingers to guide him along the way. So he started with six, with his thumb pointed up, then counted up three until he got to nine on his pointer finger, counted up three until he got to 12 on his middle finger, and so on.

With fours, I introduced the idea of actually skip counting as he counted by twos. So this way he would count two, four, six, eight, and omit every other number. We practiced this by verbally counting by twos and whispering every other number while saying louder every other number (say 2 out loud, whisper 4, say 6 out loud, etc.). We also did this visually by writing out 2, 4, 6, 8 and then crossing out every other number. Once he has a better handle on his threes, we will be doing the same thing in order to master sixes (skip counting every other multiple).

When he gets to a multiplication problem, we have a strategy for when one of the two numbers is five or below (if both numbers are above five he has to draw it out--for 6×6 he draws six dots six times--not the most efficient strategy but we’re working our way up). He underlines the smaller number, knowing he's going to skip count by that number the amount of times indicated by the other number. So if it's 2×4, he would underline the two, and count by twos four times (2, 4, 6, 8).

Over time, he is memorizing more and more of the products, and the multiplication drills that he's doing at school will certainly benefit this as well. But it's so important that he understands why he's multiplying and has additional strategies for when memorization fails him. I'm sure all adults have gotten to a mental block at some point where we just can't remember a multiple of seven, or eight. Teaching multiplication through memorization should be a backdrop to a greater understanding of what the student is really doing.


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.


--click below for printable version of this article--

Teaching Multiplication through Skip-Counting to a Student with Special Needs - printable version


As a teacher and professional tutor, Alexandra might possibly share a few more guest blog posts here in the future--where she will reveal additional insight into her student who has Agenesis of the Corpus Callosum and how it affects the student's education, and she will also be sharing teaching strategies that have helped her student.*


*Note: Agenesis of the Corpus Callosum 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.


Saturday, March 9, 2013

Meet Bradley - An Adult with ACC


Last year I received an e-mail from Sarah in Australia who informed me that she would like to share her adult brother, Bradley's, ACC story. I was very excited to receive a second e-mail from Sarah in February (telling her brother's story). With her brother's permission (and her help writing) I am very honored and so grateful to be able to share Bradley's ACC Story here with you.


Updated on March 31, 2013


~~Written by Bradley's Sister~~

Bradley and his sister, Sarah, on his 21st birthday


Bradley turned 21 on 29th September 2012. Brad's ACC is quite severe compared to some of the stories on the blog.

I'd like to hear from some other families who care for a person with this type of severity.

At the time of Brad's diagnosis there was 4 known cases in Australia. A lot of people confuse Brad's ACC with cerebral palsy. His speech is impaired and physically his feet are tense and will not flex. He wears orthotics with shoes when walking and also canadian sticks -- (below)


but cannot stand up straight. He bends over and his knees still bend in. He has had two operations to try to straighten his legs.

He sometimes has accidents with wetting the bed. This has improved greatly with age. But sometimes needs reminding/asking.

Overall Brad is a very happy young adult. He has a great memory. He is an attention seeker and can sometimes get angry if things don't go his own way.


QUESTIONS & ANSWERS:


When did you find out that you have ACC? How old?

About 6 months, Brad's reactions were slow. Brad received services from a physio, speech and occupational therapist prior to school.

What did you struggle with in school?

Attention span and concentration.

What did you enjoy most and do well at in school?

Enjoyed the library and borrowing books.

Did you struggle with social skills in school?

Not at all - loves attention and willing to talk to anyone even though his speech is impaired.

Did you make friends easily in school?

Yes he has many friends from his special needs unit at school.

Do you still struggle today with social skills as an adult?

Now that Brad has finished school he stays in touch with friends from school and made new friends at his day program.

Did you attend a mainstream classroom?

They had a separate classroom but integrated with other kids during lunch breaks.

Can you ride a bike and drive a car?

Brad could ride a modified bike during primary school Age 5-9. Brad cannot drive. Brad's first operation to straighten his legs was at 13 and the next operation was at 15. After his second operation the pressure on his knees was too much and therefore resulted in Brad spending 95% of time in his wheelchair.

Did you attend college? Did you get a degree?

No and No.

Do you have a job and if so what do you do?

No. Brad attends a program 4 days a week and does hydro therapy once a *fortnight. *[every two weeks]

Are you married? Single?

Brad is single but has a close girl friend Nicole that he visits often.

Do you have children?

No.

How does ACC affect you today as an adult?

Effects his life everyday. He can feed himself and transfer from his wheelchair into a car or onto a toilet seat. But he cannot shower himself, brush his own teeth, dress himself, cook for himself, etc.

What do you enjoy doing the most in life...

Playing bowling on the Wii sports, Playing with his Ipad. Cooking books.

I asked Sarah a couple of questions in regard to a few of her replies above:

1. You wrote that Brad really likes cooking books. I'm curious if he likes to read them or just look at the photos in the cooking books or what intrigues him?

Brad loves looking at the photos and he wants people to help him make the recipes. He can't read but recently he has been watching YouTube videos and asking people to write down the recipes to help him cook.

2. You mentioned that Brad is very social and loves to interact with people but has difficulty because his speech is impaired. I am wondering if Brad's main form of communication is verbal or if he possibly uses another method of communication (in addition to his verbal speech), if I may ask? And, if so, what type of other speech/communication method/device does he use to help him communicate with friends and other people?

No he only uses speech but after spending some time with him you can generally start to understand him. Sometimes you have to guess other words that sound like it and he will let you know if it is correct. He uses an ipad and can usually show photos of his latest outings so people can understand where he's been and what he's talking about.

What are you passionate about?

His dog (toy poodle) Bailey, Enjoying food with family and visiting friends, taking photos and swimming.

Bradley and his dog, Bailey

Do you have a specific goal or dream that you are passionate about and would like to achieve?

To go overseas to Hawaii.




Bradley, 21 years old (written by his sister, Sarah)
February 19, 2013
Australia


Sarah expressed an interest in hearing from other families who care for a grown child with ACC who have similarities with her brother, Bradley. 

If you would like to contact Sarah, you can leave a comment here for her. Or you are welcome to email Sarah.  


In addition, if you would like to post a message for Bradley in regard to his ACC Story,  please leave a comment for Bradley. 

They would both enjoy hearing from you.

If you are an adult who has ACC or a corpus callosum
disorder, do you want to share your story?

Each person is unique. Every story is welcome and
every story is worthy.

I would love to hear from you. Please send me an e-mail

Monday, February 18, 2013

Organization and Managing Tasks

Alexandra Berube has written several guest blog articles about her teaching experiences with her student who has Agenesis of the Corpus Callosum. She is a former Kindergarten teacher, who first taught the student in her Kindergarten class and she also tutors the student, who is currently in a regular 3rd grade mainstream class.

Her article today is about staying organized and managing school tasks and homework. This is a topic that is common among a lot of kids with ACC and comes up often in the ACC support groups. Organizational skills in school (and in general) is something that many children who have Agenesis of the Corpus Callosum struggle with. Some adults who have ACC also state that they sometimes require help with organization.

A lot of parents who have a child with ACC mention that it is helpful (and very necessary) for their child to keep a homework log (with daily help/assistance from their teachers or an aide) in order for the child to stay organized with homework, assignments due, and upcoming tests.


GUEST BLOG POST


Organization and Management of Tasks--And How it Coincides with Academic Progress
by Alexandra Berube, bostontutoringservices.com


It is interesting to consider how organization skills transfer to the development of academic skills. In a general sense, it can make it difficult for students to keep track of assignments and paperwork, as well as the important task of time management for keeping on top of daily homework and projects. If it is difficult for you to keep track of your tangible paperwork, this will get in the way of actually completing it efficiently. If you don't know where your papers are, it's harder to get them done and turned in.

*Max, as well as other students that I've worked with, can find that this interferes with their daily life quite often. It is important to establish firm guidelines for how we will organize physical paperwork, and then in a larger sense, to keep track of deadlines so that big projects do not suddenly come upon us at the last minute when we could've been working on them all along. These two parallel tasks both need strict systems in order for the student to progress.

I know that Max has struggled with keeping track of where he puts his homework and when he is going to complete it. We have talked about various organizational strategies to help him. We talked about color coding his folders, so that he associates the color red with all English assignments, the color blue with all math assignments, etc. Over time, if he puts everything related to one subject into color-coded folders and binders that forever stay associated with that subject area, the visual reminder will help. It is extremely important at all times to have visual reminders because they are the most concrete.

We have also talked about using images for each task and stacking them in order (ie, storyboarding) to use visual reminders to cue him in organizing these tasks. When he gets a homework assignment, the visual reminder to put it in a color-coded binder, followed by the visual reminder to input any dates that need to be remembered into a weekly calendar, are very helpful. Visual reminders become ingrained over time, and many students, including Max, have difficulty following too many steps at once, so this breaks it down piece by piece.

The sequence of visual reminders specific to each child can be placed on their desk and they can be reminded to look at them when it comes to a task that requires organization skills. If they have a personal system for keeping track of physical objects and of assignments, with very specific visual clues that break it down step-by-step so that they know and are reminded of their organization system every time it is required, it will become easier over time.

I also wanted to add one note about how difficulty with organization can affect academic progress. Reading comprehension is based on the understanding of sequencing--that one thing logically progresses to the next in a story. Many students have difficulty with this and students with ACC that I have worked with have found it to be more challenging to keep track of the logical sequence of events in a story. It is important to break down each piece into visual elements that can be sequenced. I have students read stories with simple sequencing, such as a bedtime routine (which they can also relate to) and retell the sequence. I also have them write their own sequences, such as their own bedtime routine.

In one lesson, I had the student read several pieces that involved logical sequences and discussed each step of the way what had happened in previous steps. He had difficulty with remembering previous steps in sequences that he read, but did a great job with writing down events that happen in order. He was able to logically describe activities step-by-step in sequence, and then write them, so his ability to read and retain sequences in stories will continue to improve with practice of expressing how things happen in sequence. This will help him think more about sequences when he reads, as he gets used to the idea that each part of a story progresses from what proceeded it. Reading and writing are parallel processes and one lends competency toward the other. In the same vein, organization in one’s daily life leads to better comprehension of the inherent organization and order within academic subject areas.


*Name has been changed.



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.


--click below for printable version of this article--

Organization and Management of Tasks--And How it Coincides with Academic Progress - printable version


Watch for an upcoming guest blog post here in the near future from Teacher/Tutor, Alexandra Berube.

As a teacher and professional tutor, Alexandra plans to share more future guest blog posts here--where she will reveal additional insight into her student who has Agenesis of the Corpus Callosum and how it affects the student's education, and she will also be sharing teaching strategies that have helped her student.**


**Note: Agenesis of the Corpus Callosum 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.


Friday, January 18, 2013

Knowing Alex-print book now available!


You may recall that last year in September Cindy Mauro Reisenauer and Alex Reisenauer, a mother/son duo, co-authored a very personal (electronic) book titled: Knowing Alex, about living life with Agenesis of the Corpus Callosum.

At that time it was only available as an e-book, with the hopes that a print version of the book would soon follow.

Well, I just received an e-mail this morning from Cindy who informed me that the print version of their book Knowing Alex: Life with Agenesis of the Corpus Callosum is now available (for those of you who prefer a print copy--a regular paperback book).

Buy the print version.

Plus, they have just created a brand new website with information about their book.

http://www.knowingalex.com/

Read Amazon reviews of the book.

Have a look inside the Kindle version of the book to view the Table of Contents and read an excerpt.

Note: At this time the book is only available in English.

P.S. The previous e-book versions of Knowing Alex are still available for purchase, too.

Thursday, December 20, 2012

ACC - "The Mystery of the Missed Connection" article - January-February 2013


Many months ago, I was contacted by a writer, Daisy Yuhas, from Scientific American Mind magazine who was inquiring about connecting with an adult who has Agenesis of the Corpus Callosum, who would be interested in being interviewed by her for an article about ACC in their magazine. After carefully checking her credentials and exploring their magazine further, I sent out Daisy's request to the ACC Adults yahoo e-mail support group and was so excited to learn that there was an interest from not only one adult who has ACC (but from SEVERAL adults) who wanted to be interviewed for the article.

In our correspondence between then and now, it was revealed that Daisy hoped to be able to not only write an article about one adult, who has Agenesis of the Corpus Callosum, in the magazine but to also include a follow-up to the article where she could include several more stories about other adults with ACC (who she interviewed).

This morning I received an e-mail from Daisy Yuhas who informed me that the ACC article is finished and it will appear in the January/February 2013 issue of Scientific American Mind. The additional stories of adults with ACC was published today, December 20, 2012, and appears in their Scientific American Blog.

I am including Daisy's e-mail below, so you can read it for yourself:

"Dear Sandie,

I hope that you're doing well! I just wanted to share that the agenesis of the corpus callosum feature will appear in the January-February 2013 issue of Scientific American Mind (you can find a preview with a paragraph or two online—the issue will hit newsstands in the new year). In addition, Scienitfic American has run a blog post that shares a few additional stories. I realize I can't possibly do justice to the full range of experiences shared— but I want to thank you again for your help in putting me in touch with others who could share their stories. I truly believe that readers will find strength in reading these experiences.

All the best and very happy holidays,

-Daisy"

This is incredibly exciting news and, thanks to each one of the adults who have ACC who shared their stories (and who revealed personal insights about living life with Agenesis of the Corpus Callosum), as well as the people at Scientific American Mind, there is now an even greater awareness about ACC, which brings us one step further in helping other adults and children in the world who have this congenital brain anomaly.

I know that (as a mom myself of a child with Agenesis of the Corpus Callosum) I definitely plan to buy a copy of the January/February 2013 Scientific American Mind magazine for The Mystery of the Missed Connection article.