ACC - Back to School Documents

To all of you who have e-mailed me, sent requests for ACC documents, etc., I apologize that you have not received a response from me. My husband suffered a serious cardiac arrest and he passed away. At the present time I am not able to manage sending out information and answering e-mails.

UPDATE: September 13, 2014 - Due to the death of my husband, and the considerable amount of care that my son who has ACC requires on a daily basis, as well as the many other tasks that now require my time and attention, I am very sorry to say that I will not be able to reply to emails or send out information anymore.

I hope that this blog will continue to be of some help as a resource about ACC, ACC support groups, and other information. Thank you very much for your understanding.

Kids and School and Agenesis of the Corpus Callosum.

This is a repost because Fall is right around the corner and that means - Back to School.

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

Articles written by Teacher/Tutor of Student with ACC
At the end of each article you will find a link - for a 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"

click on links below for printable brochures:

Disorders of the Corpus Callosum Brochure: English

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

Please consider sharing a comment below mentioning the type of information, about ACC, that you share with your child's teacher.

I encourage you to include any details about specific information that you share (as well as how you present it to your child's teachers and school) because that type of information is very helpful, and it gives a variety of creative ideas for other families, reading this blog, who have a child with ACC in school or about to begin school. Thank you very much.

A Little Glimpse Into Me (Brian) - an adult who has ACC

This morning I discovered a new guestbook entry from someone who wrote a note on the ACC-Angels Around the World website.

I eagerly read the guestbook message and was thrilled to learn that it was from Brian, an adult who has Agenesis of the Corpus Callosum, who is married...with two adorable little children. He left a lovely note, and he also provided a link to his brand new website where he will reveal (and share stories and insight into his own perspective and experiences) what it is like to have ACC.

It is always enlightening to have the opportunity to hear directly from the adults who have ACC--whether you are the parent of a child with ACC, or another adult who has been diagnosed with ACC.

Being the parent myself of a child who has ACC, and involved in ACC e-mail support groups over the years, I (and many other parents who have a child with ACC) eagerly welcome and seek out the input from the adults themselves who have lived their life having ACC and who are so thoughtfully willing to share their story.

So, if you are as eager as I was, go ahead and open Brian's 'book' and have a look at what he has to say...

A Little Glimpse Into Me - Part One - The Very Early Years

and

Now What Was I Just Saying? What Was I Just Doing?

I very much look forward to reading each new future blog entry that Brian will write and reveal.

Brian's new website is titled ACC & Me

Please consider leaving Brian a message on the comment section on his blog entries if you read his stories, or if you have any questions, or if you are an adult with ACC who can relate to what Brian is saying.

I'm sure that Brian would enjoy and appreciate hearing from you.

Get ready for...

It's June now. And, in a few short weeks it will be summer! Ahhhh, my very favorite time of the year.

The sunshine, picnics, swimming, basking outside in the glorious warmth and all that fun.

One of the things that we (my son, Matthew, and I) especially look forward to is:

the summer reading program through our local library.

We have done this for several years--complete with buying him a very cute summer reading t-shirt at the library--to Matthew receiving a new favorite book (of his choice) from the library's prize book selection, upon completion of his reading chart and wonderful story adventures.

Today, June 1st, marked the 'let the summer reading program begin' day at our local library.

So, we excitedly picked up a packet (which includes a cute reading chart) and we will definitely be on board the reading train, that takes place promptly at bedtime, this evening in our household.

Reading books together is a marvelous way to incorporate language (and a whole lot more) into your child's learning process. Plus, it's just so much fun to find/discover/stumble upon the perfect books that capture your child's attention and stir up their imagination in such delightful ways, all the while helping them to learn and grow, through creative and expressive reading adventures and enjoyment.

Matthew has Agenesis of the Corpus Callosum. He is non-verbal, and although he is unable to read, he is certainly an avid reader of books and has his personal favorite books that tickle his funny bone--give him the giggles, send him into the super sillies, bring about so much anticipation that he is about to burst, and also has favorite books (pages in books) that cause him to all out belly laugh so hard that I sometimes (ahem) always have to stop reading because I'm laughing, too!

What's the best thing about reading? Well, for us, it's having the ability to take a book that Matthew loves and then dive in head first--acting it out--making the words and story jump right off the pages and straight into Matthew's mind's eye.

While I love to read the words to him, I can create a whole new kind of experience and reaction, and grasp his attention far greater, if I express those words in such a way that they help to conjur up images in Matthew's mind and make them more real, more meaningful for him, making them come to life, and expanding those words right off the page, acting the story out right before his eyes.

I will also pause quite often in a story to explain something we read, to point to a part of his body that we are talking about, to tickle him--if we are reading about tickling, to tell him something funny that happened to me while I was a little girl--(that has to do with the page we are reading), etc.

For example: In one very cute book, with a bouncy repetitive rhythmic rhyme, that we borrowed from the library...

A Summery Saturday Morning

...there is a page that talks about geese that won't back down. Matthew thinks it's hilarious when I stop the story (right after reading that page about the geese) and tell him about how when I was a little girl I was at a park with my family and we were down by the lake playing in the grass, with our shoes on, fully dressed, and there were some big geese...and one BIG white goose chased me backwards (and I start acting it out for him, moving backwards and looking behind me--as I'm telling him the story) and the goose was HONKING at me...honk, honnnk, honk, and that BIG goose nearly chased me right into the lake!

I definitely notice a huge difference in Matthew's learning abilities when we have an engaging reading program taking place in our home on a regular basis.

Reading (and playful story time) helps build/increase his understanding of language with such a natural, flowing ease.

It also helps him express and become equally involved in a story when he can use sign language for the words he knows, as I am reading, and when he can choose which book he would like me to read.

Of course, for a child who is able to read, or who is just learning to read, there are so many motivating and creative ways to help them learn through the use of books.

I encourage you to join a summer reading program at your local library or to conjur up your own homemade summer reading adventures.

Here are a few of my child's favorite books...
(click on the links below to explore more about each book)

click to see inside this book

Piggy Wiglet - by David L. Harrison

Little Donkey Close Your Eyes - by Margaret Wise Brown

Llama Llama Red Pajama - by Anna Dewdney

Goodnight, Me - by Andrew Daddo

Fred's Bed - by Marilyn Singer

Sheila Rae, The Brave - by Kevin Henkes

The Three Bears - by Byron Barton

You may like to view a previous summer reading post from July of 2010 (with a few additional books).

We'd love to know the favorite books that your child adores and loves to read.

Read what others are saying by clicking on the "comments" below.

Please consider sharing your child's favorite books in the comment section--because it's always so much fun to have new books to explore. And, definitely, please feel free to elaborate and tell us what your child especially likes about their favorite book.

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.

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.

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.

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

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.

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.