iPad protective case--with amplified speakers

We contemplated getting an iPad for our son, Matthew, who has agenesis of the corpus callosum.

I knew that if we got an iPad for him, we would also need to have a protective case--one that would meet his needs. So....I spent lots of time researching all kinds -- from simple to more elaborate cases for the iPad and I read lots of other parent's reviews (who have a child with special needs). I had a few choices in mind, for my son, that I liked.

In the meantime, we decided to borrow an iPad for our son BEFORE making the decision to buy.

When Matthew was in public school, I became aware that, in Oregon, we have access to a place called OTAP (Oregon Technology Access Program).

OTAP is located in Roseburg, Oregon and they have a Loan Library that offers a variety of technology equipment from speech-communication devices, to adaptive toys, to a variety of miscellaneous items.

Now here's the cool part. You can borrow equipment from OTAP for one month for free to try it in your home! Yes, it's true and it's fantastic!

I do want to add that some expensive items you borrow (for example: some communication devices) may require you to take out insurance when sending them back. So please be sure to ask before you borrow something on loan so you know, upfront ahead of time, about any costs you might incur due to insuring an item for it's return back to OTAP.

"OTAP services are available to anyone concerned with the needs of Oregon's children with disabilities from birth to age twenty-one."

OTAP has an iPad (Item #256) in their lending library so we eagerly filled out the form and were on our way to borrowing it for Matthew!

When the iPad arrived, we discovered that it came housed inside (one of the cases that I had been researching) the iAdapter case!

I was instantly sold!

It [the iAdapter 2 case] was exactly what we were looking for in a protective case for our son, to meet his needs.

Plus, the iPad that we borrowed from OTAP came fully loaded with many educational apps and speech-communication apps (like Proloquo2Go, and TouchChat and others) to try.

After our free one month trial of the iPad with our son, we made the decision to go ahead and purchase an iPad2 AND the iAdapter 2 case.

iPad + iAdapter case = a perfect match

We purchased the iAdapter 2 case directly from AMDI (Advanced Multimedia Devices, Inc.). We paid $265.00. We love the iAdapter2 for the iPad2. They also make an iAdapter for the original iPad.

• AMDI - iAdapter Housings
• iAdapter 1 (for original iPad)
• iAdapter 2 (for iPad2)
• iAdapter 3 (for iPad3) *available June 15, 2012

What we especially love about the iAdapter is:

1. It has built-in speakers so it amplifies the sound/volume of the iPad2, making it easier to hear when you are out in public, in a noisy restaurant or other loud environment, (or for a child in a school classroom or lunchroom, etc.)

2. It has a slide switch that covers up the 'home' button on the iPad blocking the child/user from continually pushing it and leaving the program they are working on.
 
3. It has a great carry handle (easy to pick up and carry around)

Did I mention that we ♥ it? ;)

For more information and a visual view of the iAdapter, watch the video below:

*Note: please be advised the video is from a different company in the United Kingdom (and is not AMDI)

Matthew's new case manager through Brokerage (a service that supports adults with developmental disabilties) was at our home last week for a home meeting with us and when she saw Matthew using his iPad, she eagerly explored the iAdapter case and said she really liked it. I told her that I would send her more information about it through e-mail, which I did. She informed me that she has several people who could use the iAdapter case for the iPad.

I thought that because we love the iAdapter for Matthew's iPad2, and it instantly caught the eye of his case manager who really likes it, I would share it here with anyone who might want to explore it more.

And, if you know about (or have borrowed from) a lending library in your state, please consider sharing that information here by leaving a comment (or send me an e-mail) because it could help someone else become aware of a very valuable resource. Thank you very much.

*Note: After we purchased the iPad2 for our son, I found AVPlayerHD, a great app that allows me to easily upload and convert videotapes of his music therapy sessions  (from my camera)  to his iPad2!

What protective case do you use for your child's iPad?

ACC ADULTS - e-mail support group

The ACC Adults e-mail group is now available to any Adult with ACC who might have an interest and want to join.

Are you an adult with Agenesis of the Corpus Callosum?

Would you like to connect with other adults who have ACC and share in discussions and topics that pertain to living life as an adult with ACC?

I invite you to join the ACC Adults e-mail group.

From time-to-time I am contacted (through this Agenesis Corpus Callosum Blog) by adults who have ACC who are looking to connect and have contact with other adults who have ACC, who can relate to them.

I usually suggest the ACC Listserv e-mail support group, which is for everyone who has an interest in ACC--(parents of a child with ACC, adults with ACC, caregivers, grandparents, family members, professionals).

I also suggest the National Organization for Disorders of the Corpus Callosum (NODCC) because they offer an "Adults with DCC Program" (Note: you must join the NODCC to access their adult program).

Sometimes though, there are some adults who seem to be looking for a location where they can easily find and connect with other adults who have ACC to share their thoughts and feelings about living life as an adult who has ACC. I wanted to address that issue and try to create an avenue. So that is why I decided to create the ACC Adults e-mail group.  This group was created to help you find and connect with other Adults who have ACC (or a corpus callosum disorder) for the purposes of networking, discussions and support.

ACC-Adults began on May 1, 2012 and I'm excited to tell you that so far there are several new members, and it is being filled with lots of new messages.

Hopefully the group will continue to grow and will become an active and helpful place for private discussions and support between adults who have Agenesis of the Corpus Callosum.

All adults with ACC are welcome to join the ACC Adults group and read what the other adults who have ACC are posting in the group. Then, you can choose to reply to the messages, or you can post a new message, regarding a topic of your choice, and have an opportunity to interact with other adults who have ACC.

There is an "Introductions" message in the ACC-Adults group so you can reply, tell a little bit about yourself (for the other adults with ACC members to read), and you can also post a link to your blog and/or your Facebook page, if you like.

In order to stop spammers from joining the ACC Adults group and posting spam/junk mail messages, there is an approval for new ACC Adult members who join.

The ACC Adults is a private group. When you join, and are a member of ACC Adults, your discussions are not viewable to the public.

Only members of the ACC-Adults group will be able to view and respond to the messages.

I believe that it is extremely important to bring about awareness of other ACC support group options that are available for adults who have ACC because people differ in terms of the type of ACC group that best fits their particular needs and their comfort level.

It can also be nice to have a few options to choose from. Plus, having a variety of support group choices can aid in helping you make additional contacts with more adults who have ACC and offers even more opportunities for networking, socializing and support.

ACC SUPPORT GROUPS AVAILABLE:   


NODCC - "Adults with DCC Program"

The National Organization for Disorders of the Corpus Callosum states: "The goal of this program is facilitating social connections and social support between adults who have DCC." If you would like to participate in the Adults with DCC Discussion Board, you need to fill out their application and you are required to be a member of the NODCC. This Program is a private discussion board that is only for approved "Adults with DCC"

ACC-Listserv e-mail support group

The ACC Listserv is the largest and most active ACC group with hundreds of people from all around the world who have an interest in ACC (or a corpus callosum disorder). They discuss a wide variety of topics dealing with ACC. The group consists of many parents who have a child with ACC, adults who have ACC, grandparents, family members, and others. You can post a note with your questions, concerns, or anything that you would like to discuss about ACC and you are sure to receive input, suggestions, advice and help. Everyone is welcome to join. Adults with ACC who contribute information in this group offer so much hope to so many parents who have a child with ACC.

Please be advised that I was recently informed by Sarah M., an adult who has ACC, that there are indeed some other Adults with ACC groups. I will share with you the information she provided...

Sarah wrote:

"There are many groups for Adults with ACC, we have a Yahoo Chat every month or so (can be found on facebook, "ACC WEB CHAT", for adults with ACC only. Also there is a "Young Adults and Adults with a DCC" group as well. Both groups are very active, and run by adults with a DCC. There is also a program through the NODCC for Adults with a DCC. Adults with a DCC (ACC) are also active on the listserv, as well as the other facebook groups. If anyone has any questions or if an adult with a DCC has questions about getting involved feel free to find me on facebook "Sarah R. Mellnik" or email me back here at" smellnik99@aol.com

I asked Sarah for direct links to the Adults with ACC Facebook groups she mentioned (because I don't use Facebook - but wanted to provide the links here for easy access to anyone who might be interested).

Sarah replied:

"The groups can be found by typing in "ACC WEB CHAT" or "Young Adults and Adults with DCC". I dont have the links to them. We are always excited to welcome new adults with a DCC."

UPDATE (new info)

Sarah wrote, (after this post was published):

"I found out how to get the links to other groups with a DCC. So here they are,

Young Adults and Adults with DCC:
https://www.facebook.com/groups/138724776192081/

ACC Web Chat (Facebook group but we chat in yahoo conference chat): http://www.facebook.com/groups/243883758737/

...if you don't have facebook and would still like to check out the chat on yahoo just let me know and I'll get ya the info."

Sarah also wrote:

"We connect at the conferences and then throughout the year we connect via facebook, and webchats. Facebook is probably the best way for any new adult with a DCC to connect with the rest of us."

Hopefully, these different ACC Adult support groups mentioned will bring about greater awareness of the options available, and will offer Adults who have Agenesis of the Corpus Callosum the opportunity to explore one or more avenues to find other Adults who have ACC and connect with each other in meaningful, positive ways.

Join ACC Adults e-mail group (for Adults who have ACC)

Meet Joe - An Adult with ACC

I am writing on behalf of my son Joe who is 19 years old now. The responses are a collaboration of our combined responses.

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

I found out that he had complete ACC at the time of birth. I had complications, but they were unidentifiable until he was actually born, at which time they did a scan of his head. It was then confirmed. I did not actually let Joe know until he was about 15 years old. At the time I was told, there was not much information available regarding ACC. I was told by doctors that there were cases with partial ACC where the child experienced developmental delays and/or seizures. We were at doctors for the first three years testing and looking out for the worst. Thankfully, there was nothing remarkable happening. Nothing that needed immediate medical attention.

What did you struggle with in school?

Joe had problems that were evident in preschool. He was extremely attached to family and expressed no desire to go to school. Once he was enrolled, it was a teacher in first grade that suggested I take him to a public school where there would be more resources to help with his education (he was in a private school). Once I switched him (mid-year), he was tested, but they could not justify additional help. It was not until we moved to a different school district (in 3rd grade), that his teacher identified A.D.D. Joe did not have the hyperactivity that is usually associated with A.D.D, but he was very disorganized. This lasted throughout all of grade school, where turning in schoolwork was the biggest challenge. Once he got to Jr. High, he was placed in an "emotional disorder" class. That was his first opportunity to excel a bit more. Once he went on to H.S. he was also placed into an "emotional disorder" class that helped throughout all four years. Although the schools knew of his ACC, that was never taken into consideration. All help was really based partly on his A.D.D., and associated struggles.               

What did you enjoy most about school?

There was nothing really enjoyable about grade school. He pretty much hated the fact that the teachers were unable to assist him, or understand what he was feeling. In his words, they made him feel as if he were a "stupid, slow kid". The other children bullied him constantly. The better years were in Jr, and H.S. where the teachers were more understanding and motivating. He started to read books, and found interests in reading. He also enjoyed some math.

Did you struggle with social skills in school?

Yes, again, there was nothing enjoyable related to grade school. Socially, even Jr. High was a little tough. It was not until H.S. with a whole new crowd that he was able to make some new friends. Not too many, but due to the fact that Joe is grounded, and that the confidence he has with his family has somewhat transferred, he did better and has managed to keep some friends. Joe also attended church groups, and trips (with the same group of children since 3rd grade), but was not very outgoing. The Pastors and others at the church were instrumental in helping him get out of his shell during the trips. He had no problem bonding with older people, and again with older family members.

Do you struggle today with social skills as an adult?

Joe is not very outgoing. With family and close friends, he is fun and outgoing, but not much past that. He has cared much for grandparents since a young age and was always a favorite for that. He is very comprehending and warm at heart, almost like an old soul, but again, not too much with people his own age.

Did you attend a mainstream classroom?

This was pretty much explained in "school struggles".

Did you receive Special Ed resource help?

To a certain extent, and again, it was most in relation to the A.D.D. Joe took medication from 3rd grade through the end of Freshman year for A.D.D. He also took some anti-anxiety meds for a couple of years, but my feeling is that is was mostly due to the fact that he was having such a difficult time socially. He also had to see a Psychiatrist to dispense the medication, but as he grew older and started coping with the social issues (end of Jr. High and HS), we found no need to continue.

Can you ride a bike or drive a car?

Joe had an extremely difficult time learning to ride a bike. He first could not do it alltogether, but then after he learned, he could not start off. He finally got it at about 15 years old, when he wanted to go out with friends and he felt pressured to learn. As for driving a car, the A.D.D and obsession with driving video games helped out much there. Joe learned how to safely drive a car at 16. He got his license at 17 and has been an excellent driver since.

Did you attend college? Did you get a degree?

Joe was told that he would be able to attend college, but only if he were to just focus on one, maybe two courses per period. Towards the middle of Sr. Year, Joe approached me with the thought of joining the military since he read much on armory (books). At first I was hesitant, but he convinced me. I agreed to him joining, but I had a preference as to the area, or section. Joe was told he had to lose about 40 lbs to make weight and study for the ASVAB (Armed Services Vocational Aptitude Battery). It has been a long struggle, but Joe lost all the weight and studied. However, I think the largest obstacle is fear of being on his own. I would not necessarily say that it is fear of going, but more of not being around family.

Now...

I noticed that there is so much now on the internet related to ACC that was not there before. I wish there were more related to adults but some of these stories on here have still given some insight. The main difference is that Joe is otherwise a very healthy individual. His eyesight is better than 20/20 and he loves to run, and weight lift now. He still loves reading on weaponry and volunteers (with adults) at the church service weekly.

We wonder if/what there is anything else to face, or if there are cases that may be more similar to his. He is still very shy with people he does not already know, but working at becoming more outgoing.

Vilma M
Illinois


I am grateful to Joe and his mother, Vilma, for contributing Joe's personal ACC story and for making it available here on the ACC blog for others to read. Thank you very much Joe and Vilma for taking the time to touch the lives of other people.

Like Joe's mother wrote earlier, I also "wish there were more [information] related to adults" [who have ACC].

It is always very interesting and helpful to read more about adults who have agenesis of the corpus callosum. Their unique input and inside perspective is invaluable.

I am so happy that Joe's mother contacted me and expressed their two-fold desire to tell Joe's Story. 

Joe's mother, Vilma, expressed an interest in hearing from other families who have a grown adult son or daughter with ACC who have similarities with her son, Joe. 

If you would like to contact Vilma, please leave a comment here for her. 

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

I know that they would 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

ACC & Moms-To-Be Story #13

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.

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

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

Christina, the mom of an adorable baby girl,
expressed a desire to share her own story.

I am so grateful to be able to include Christina's ACC
Pregnancy Story here.

Thank you very much, Christina. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and for your desire to reach out to help others and offer hope.

"The Story of Our Little Superhero"


I should start by saying this is still very hard for me to write, but I would like other mothers to benefit from my story, as I have benefited from theirs.

My daughter was born on September 2nd 2011 at 7:07pm.

My daughter's pregnancy was completely planned--we wanted to become pregnant by a certain date, or we would wait a while for my husband to finish his schooling. I found out I was pregnant, and we couldn't believe it worked. I had a great pregnancy early on, with the exception of a TON of morning sickness. All I could think about was whether we were having a boy or a girl, how I would decorate the room etc. I took all the precautions--never took a hot bath, took prenatal vitamins, avoided certain foods and started sleeping on my side right away. I had many Moms tell me I was overreacting, but I didn't want anything to go wrong. I had no clue about the uphill battle we were about to face.

At our 20 week ultrasound, we found out we were having a baby girl. We left the ultrasound room, and were told to wait in the lobby. We didn't think much about it, and started texting and calling family and friends to tell them the news. Finally, a nurse came and asked us to follow her to a conference room. Right away, I knew something was wrong. We sat down, and she told us that our baby was "missing part of her brain", and that we would have to "start seeing specialists right away" and that the ultrasound techs "never got anything wrong". I started crying so hard, I was almost screaming. I never met this nurse, and she was telling me the worst news of my life. She even told me "look at me, you're going to be ok"... like she had any idea of what I was going through.

My husband and I sat there and cried and even told the nurse to leave the room. I had so many thoughts going through my mind--would I lose the baby? Why did this happen to me? What does my daughter's future look like? I never felt so horrible in my entire life. The nurse made me feel as if our only option was to terminate the pregnancy, which made me just feel sick and the lowest ever. The nurse took us to see our doctor, in order to answer any questions. While waiting to see my doctor, I heard other babies crying, and I kept thinking "Will I be able to hear my baby cry?" and it made me fall apart. My husband had to put his hands over my ears so I wouldn't hear the other babies. I work at a hospital that serves children with severe mental disabilities. Needless to say, my mind was going crazy. Our doctor was able to explain what was going on in a clearer and more positive manner. She told us the ultrasound machines may have missed her corpus callosum, and that we need to have a follow up appointment with better ultrasound equipment to check us out. She even told us that in her professional experience, she has worked with 1 baby who was diagnosed with ACC and that the baby turned out to be a happy, healthy baby. She explained to us what ACC was, and what we had to do from here on out.

I remember going home, and feeling completely numb. I didn't want to talk to anyone but my husband. We didn't know what to expect, think or feel. We ran through every scenario, and nothing really made me feel better. My doctor told me not to Google anything, and I tried really hard not to. But of course, I did and only found stories detailing the worst case scenarios. I kept clinging to the hope that the ultrasound machine made a mistake, and that we would be told everything would be normal. I didn’t sleep at all that night.

The next day, we met with a perinatologist to do another ultrasound. We found out that he also did not see her corpus callosum, but emphasized that he saw a "little line" that may be her corpus callosum, and that we wont be sure until we get an MRI. The doctor also told us that her ventricles were enlarged, and the MRI would give us exact measurements. I felt like I was hit by a truck, and that everything I planned for was gone. The doctor reassured us and told us that she doesn't look like she has other abnormalities, which is a good sign. He didn't want to do any genetic testing until I had the baby, as it might induce me and set off an early birth. We were to come back to this doctor in six weeks for another follow up.

Although I was extremely sad, anxious and tense, I kept having hope and staying positive by feeling my daughter's kicks. She kicked so much! She would even wake me up at night! Every time I felt her move, I kept telling myself that this was her way of saying "Mommy, I'm OK".

During the rest of the pregnancy, I kept clinging to the hope that our daughter did not have other abnormalities and that if I worked with her, she would be OK. We met with so many specialists--perinatologists, neurologists, neonatologists. I tried everything I could do to learn more. But, like most Moms, I couldn't really find anything.

My husband took a legal internship 2 hours away from me, making things a bit worse. At about 26 weeks, I started noticing my hands swelling. Just to be safe, I had a nurse at my work take my blood pressure and it was pretty high. I called my doctor, and she told me just to go home and relax. Of course, I couldn't. I went home, tried to relax, then went to a grocery store to get my blood pressure checked and it was way, way higher. I called the doctor and I was to go to the emergency room immediately. My sister in-law picked me up, and as much as I didn’t want to be admitted, we were admitted right away.

My husband was able to rush and meet me at the hospital, and luckily everything was fine. I was diagnosed with pregnancy induced hypertension, and from there until I was due, I was to have 3 appointments every week with the perinatologist to monitor my amniotic fluid levels, check the baby's heartbeat and make sure she didn't arrive early. I was also put on bed rest for 5 days.

On top of everything else, I now had high blood pressure. I felt like a failure, like I was not meant to be a Mom. Like this was nature's way of telling me that my body was not meant to have babies. To this day, I still feel like this. I still run every scenario through my mind to try and figure out why this happened--was it the car accident I was in at 10 weeks (doctor says no). Was it because I took too hot of a bath? Did I eat something wrong? This still runs through my head, despite all of my doctor's reassurances.

When I went in for the fetal MRI, I was extremely nervous (and hungry), and was anxious to see the results. When I took the fetal MRI, I was so nervous to see the results. The MRI itself was not as bad as I thought, as I was able to have my husband stay in the room with me, and I had my family there for support.

About 4 days later, we met with our doctor and the MRI showed that my daughter was for sure missing her corpus callosum, and that her ventricles were still enlarged. She was definitely diagnosed with agenesis of the corpus callosum.

I remember hearing this for the first time, and I just cried. I cried, and I was so scared, as I didn't know what any of this meant. I remember hearing a song on the radio about love and heartbreak, and crying hysterically because I wondered whether or not my daughter would ever fall in love, or experience life like a normal girl. The most frustrating part (and continues to this day), is that nobody could tell me exactly what it meant for my daughter. I would have to wait and learn.

Aside from all of the appointments, and constant worry, everything else was going OK. My daughter was presenting feet-down, so we were planning on having a scheduled c-section on September 10th. However, on August 26th I felt somewhat of a tear in my lower abdomen. I thought my water broke, but I was wrong, and later found out it was my daughter turning! We went in for an ultrasound and found out she was head-down. We were now going to have a vaginal birth. This little girl had a mind of her own! My blood pressure continued to rise, so my doctor decided to schedule an induction. After scheduling my induction, my doctor gave me the kindest words a pregnant mother can hear--"You've done your job."

My daughter was born on September 2nd 2011 at 7:07pm, 5 lbs 0oz, 18.8 inches. I was in labor a total of 36 hours. After pushing for 2.5 hours, my daughter arrived with the cord wrapped around her neck and was ghostly white due to lack of oxygen. She was already scheduled for a NICU stay due to her diagnosis, so the nurses and neonatologist were already on hand ready to take her to the NICU. The original plan was that I would be able to hold her for a while, then proceed to the NICU. However, because of the cord, she was quickly shipped away. The first words I heard after she is born is "we have to resuscitate"... I never felt so alert in my life. I was not exhausted, or tired, all I wanted to do was know what was going on. I saw her for a few seconds before she left. My husband quickly followed the NICU doctors and nurses, while my Grama waited with me to get stitched up and recover. The entire time I just remember wanting everything to be over so I could see her. However, the nurses wouldn't let me go to the NICU until I spent 2 hours in recovery.

When I finally saw her, I was devastated. She was attached to a breathing machine, with the mask covering her entire face, and cords attached all over her body. To this day, I can't look at the pictures without crying. However, at the time, I found my inner strength and held it together for my baby. I read to her that night, and slept in my own recovery room while my husband slept in her NICU room (we had our own individual NICU room).

We were in the NICU for a total of 5 days. My husband slept there 2 nights and I slept there 2 nights. We had a system worked out with my mother in-law so that my daughter was never alone in the NICU. I am eternally grateful to my mother in-law for this, as it was really important to us that she was never alone. Although the hospital staff was very nice, I couldn't bear the thought of her having a volunteer hold her, or have a nurse feed her.

Going home was exciting! We were sent home on a BiliBlanket, which made things difficult, but we were happy to be home.

My daughter is currently in the Birth-to-Three program, receiving services for Physical Therapy. At 6 weeks, her motor skills and fine motor skills were only in the 1 percentile. We don't know if this is due to her size (she was born small, and therefore lacked the muscle development), or the ACC.

My daughter is now 7.5 months, and she is doing great! She laughs, smiles and lets you know when she wants her way! I couldn't ask for a more perfect baby. She still receives weekly physical therapy, but so far, has been on par developmentally. She will see a neurologist every 6 months to check her development and to see if any hydrocephalus appears (she had enlarged ventricles in the womb, but have since continued to go down). Some things I have noticed is that she always picks up new skills with her left side first--she then develops the skill on her right side a few weeks later. The neurologist did not have an explanation for this, but said it is no cause for alarm.

Some days, I completely forget that she has ACC. Other days, I can't seem to get it out of my mind. She seems like a "normal" baby now, but I worry that down the line, she will start showing symptoms (as a lot of children with ACC do). I worry that she won't have any friends, or won't be able to do some of the things we did as children. But I’ve learned to not dread on the "what ifs", as I won't be able to enjoy the beautiful baby in front of me.

We also constantly debate whether or not we should tell our daughter, and others, about her diagnosis. What if she turns out "ok", and uses her diagnosis as a crutch? What if she finds out later down the line, and learns to resent us for it? I also hesitate telling others, as I don't want them to treat her differently, or tell me stories of someone they knew with ACC. There are children at my work who are diagnosed with ACC, and for this reason, I won’t tell my coworkers, as I worry they will compare my daughter to these children.

Despite the difficulties, I am thankful that I have such a beautiful, intelligent, amazing little girl. I love her smiles, her cute little toes, her LONG, curly, crazy, dark hair, her beautiful blue eyes. She's going to change the world someday, and I'm going to be there the entire time, cheering her on!

Learning Tools & Ideas #4

Agenesis Corpus Callosum
Teaching Tip:

What is so unique about this teaching tip?

Well, it comes from a pre-Kindergarten teacher,
Patty, and SHE has Agenesis of the Corpus Callosum!

When I created the Learning Tools & Teaching Tips
section on this blog I asked for input from a lot of
people in the ACC support groups that I belong to.
Patty sent a note and reminded me of the previous
input she shared, in her own ACC story, about the
midline exercises SMART program that she uses with
the students in her classroom.

And then today another pre-Kindergarten teacher, who
has a young nephew who was recently diagnosed with ACC,
read Patty's ACC story (and read the section of Patty's
story where Patty mentions and describes the midline
crossing exercise program) and the teacher posted a
comment regarding her interest in the SMART program!

I believe that Patty's input about the midline crossing
exercise program, from the standpoint and perspective of
a pre-Kindergarten teacher AND as an adult who has ACC,
is absolutely worth reposting here in this Learning Tools
and Teaching Tips section.

I hope that you will, too. Please read it for yourself...

PATTY TALKS ABOUT THE SMART PROGRAM:

It is very evident to me that Patty is a dedicated
teacher who cares about helping her students learn
and I have seen her passion for teaching and helping
kids/students take place before my own eyes.

Patty belongs to one of the same ACC online e-mail
support groups that I belong to. In fact, just
recently Patty reached out to the parent of a young
child who has Agenesis of the Corpus Callosum who
was asking for help with her child's learning needs
and challenges. Patty gave advice to the parent and
offered specific, detailed teaching methods and ideas
to try. Along with Patty's specific reply to the parent
she also included this information:

"If you stimulate the different hemispheres of the
brain with crawling activities and stretching across
the body activities, the brain will begin to be
stimulated.

Even with having a ACC-C myself. I have found that
these midline crossing activities help my cognition
to engage better that day, and I am the teacher!

Look into a local S.M.A.R.T. training program near you.
The program is for struggling students in the early years.
The program is very hands on and was designed by some
people who had children with special needs. It combines,
OT and PT and ST mixed in. The activities themselves are
between 2-5 minutes each."

S.M.A.R.T.  stands for:

Stimulating Maturity through Accelerated Readiness
Training.

S.M.A.R.T. is a multisensory program.

Many kids who have Agenesis of the Corpus Callosum
have benefited from using a multisensory teaching
approach. The midline crossing exercises that are
incorporated into S.M.A.R.T are an added bonus for
someone who has ACC.

The S.M.A.R.T program is being implemented into
some schools in pre-kindergarten, kindergarten and
in some first and second grade classrooms and seems
to be a big hit with the students and staff.

Because I have a child who has Agenesis of the Corpus
Callosum, I was curious to learn more about S.M.A.R.T.

I asked Patty:

Do you know of a specific website for S.M.A.R.T.?

"I have my resources at school. go figure. SO I
would have to look the website information when
I get back to school. I can check on Monday.
I know there is a 4 day training seminar that all
"moderators" (and teachers too) are supposed to
take to be accurately trained. I am doing the
budget version and having my sister train me
(until my district would pay all or part of my
way of course.) My sister is the moderator for
her school. So she does the activities with all
kindergarten, all first grade and some second grade
students. She had them on a weekly scheduled time
just as gym or art would be scheduled. The reading
and math scores have greatly improved in one years
time from the impletation of this program. She has
several of the large motor activities done in her
classroom. In addition, each of the dedicated
teachers do more activities in their daily routines
such as I do. The only class that did not show
improvement with measurable success was from a
teacher, who had students in a half day program.
She was "too busy" to be consistent and take time
to do the activities. I heard that and knew I
could make it work in my half day program.

I will send you an email containing exact details
off the materials that I have at school. I should
have time to grab the books on Monday... if I
remember.... ha! I crack myself up! Note to self:
bring SMART books home! I know the creators of this
program set out to help their own child with special
needs. It worked for them so they wanted to share it
with others!"

I love that Patty is able to make a joke about her
difficulty with short-term memory loss and can laugh
at herself.

In my own research I found the following information
about S.M.A.R.T. and will share it here for anyone who,
like me, may be curious and interested:

Check out a school in Wisconsin where a teacher uses the
S.M.A.R.T. program with the PreK students in her class.

The teacher, Miss Beth, wrote:

"The S.M.A.R.T. curriculum is designed to help each
student progress at her or his own rate and to enrich
and enhance the student's abilities in a positive and
"play-like" atmosphere."

Have a detailed look at S.M.A.R.T. in the News

and

A S.M.A.R.T. new program at Jefferson

Minnesota Learning Resource Center-S.M.A.R.T. Info.

S.M.A.R.T on Facebook

S.M.A.R.T. News-April/May 2008

S.M.A.R.T. E-Newsletter Archives and E-Mail Sign Up

S.M.A.R.T. Online Resources

I asked Patty:

Do you do midline activities with the students
in your classroom?

"I do midline activities every day. I have received
many compliments from parents that they have new
children with their profound improvement of skills.
I have not done a ton of "academics" I do a ton of
"train the brain" activities. It may look like we
don't do much to the untrained professional. Yet by
golly I have a class of students, where 95% of them
are ready for Kindergarten. Hallelujah!"

"I do the "hulk stretch" where we reach up and grab
something, with both hands, big from the sky on the
left and carry "it" over to the right side with our
arms going from extended up to lowered down and SMASH
the thing across our knees. My 4 year olds of course
have to show me a good "grrr" muscle pose before it
as a added humorous body building move! Hulk-smash...
get it! Then we do the crossover "smashing about five
times on each knee, alternating left/right/ left right/
etc....."

alligator crawl - picture not Patty's class


"We do the alligator crawl where their belly must
stay on the floor but they have to crawl with
their bottoms down also, Their knees alternate
as if to crawl, left arm up right knee up, right
arm up left knee up. Their bottoms must be down
at all times and their arms can not carry them
they must bring their knees up in te correct
pattern. I had 3 to 4 kids who could not do it
in October that are able to do it more successfully
now. THey do not do it 100 % all the time but their
success is up from 0% correct body patterns to about
75% of the path is done correctly. My path for this
is about 10 - 15 feet long. I moved tables and chairs
away from a part of the room."

"I do the bear crawl where their hands and feet
do the crawling pattern with their bottom in the
air....I had a few kids tip over from having their
legs go faster than their hands...The length of
the path is the same as the gator crawl.

I do a flamingo stand with one foot in the air at
a time, counting to 5 at first, then building to a
count of 10. Also I do a heel tap where the child
stands up and taps the right heel with the left
hand both in front of the body for x amount of
times and then behind the body for x amount of
times."

sensory crawl - picture is not Patty's class


"There is a sensory crawl where pictures of objects
are in clear pockets taped to the floor. The child
names the object and taps the picture. then he
crawls to the next picture on the floor and does
the same. use 10 pictures of objects at least.

Hook board- little mug hooks are on a post and a
child puts varying size washers on the hooks all
with one hand and then uses the other hand to take
all the washers off. start with bigger washers
and then move to smaller washers.

Wipe off boards- Make simple maze patterns and
have the child follow the right path with their
finger first. Another activitiy is drawing letters
or lines on the wipe off board and have the child
erase the lines using their pointer finger.

Use small tongs (without the sliding ring- it
pinches fingers) and have kids pick up pon poms
from small bins, putting them from one bin to
another bin.

Do the same with eye brow tweezers and small
pon poms or beads. Boy do they really have to
concentrate on that! I love their little tongues
sticking out trying to focus on a steady hand."

spin in circles - picture is not Patty's class


"Spin in circles counting to ten. or get a
"sit and spin" and let it rip (counting to 10)!
Then reverse the direction they are spinning.
I had horrible problems with one girl's need
to spin before I was told by my sister
(trained in SMART) " let her do it"
"do it daily" we did it daily for 4 weeks.
She was a new child! She sat still better
and had better focus after we spun! Spinning
builds the core muscles in their belly needed
to sit better on chairs.
I could on and on....."

She could go on and on and I could listen to
her with great interest.

As a mom myself of a child who has Agenesis of the
Corpus Callosum, I am highly interested in what Patty
has to say from both the perspective of an adult, who
has ACC, and as a teacher.

Thank you very much, Patty, for your willingness
to openly share your ACC Story, for taking the time
to answer my questions and also for sharing some of
the S.M.A.R.T. multisensory and midline crossing
exercises that you do daily with the students in
your classroom.


Do YOU have a learning tool that you would like to share here?

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

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


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

ACC & Moms-To-Be Story #12

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

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

Michelle, the mom of a 5 1/2 week old baby girl,
contacted me and she expressed a desire to share
her own story.

I got in touch with Michelle through e-mail last week on
a Monday and that same day, within hours, I received her story.

I am so grateful to be able to include Michelle's ACC
Pregnancy Story here.

Thank you very much, Michelle. It is truly a privilege to
be able to post your story here on the blog for others to
read. I want to thank you from my heart for your willingness
to express your story in words and pictures , and for your desire to reach out to help other people and offer hope.

Written by Michelle:


When I sat down to write this, it took me a while to pinpoint where I wanted to start because I think the events in my life leading up to this journey are the reasons why we were able to get through what we have with our heads held high.

I met my husband Craig in high school and we married in 2004. In 2007 we had our first child, (a son), who we named Keegan. Keegan is the sunshine of our lives. He was really a perfect baby!! He was always happy, slept well, ate well and just fit into our lives as if he was always there. We call Keegan our “little old soul”. He has such a huge heart and is always sensitive to what is going on around him. When Keegan was around 1 ½, we had a little “whoopsie” and I found out I was pregnant in October of 2008….this is where this crazy journey begins!!!

Although the pregnancy wasn’t planned, we were all very excited. I always wanted to have my children close together because my brother and I are only 13 months apart and I wanted my children to have a close relationship like we have. 4 weeks after I found out I was pregnant, I started showing signs of miscarriage. We went to the hospital and this is when we had learned that the baby we had already grown to love was no longer with us. It was an awful thing to go through, but it was the first time I had miscarried and I knew how common it was. Since the pregnancy wasn’t planned in the first place, we decided to wait a little longer before trying again.

In 2009 I ended up having 2 more miscarriages so my Dr referred me to a fertility clinic for some in depth testing.

By the time I made it to the fertility clinic I was pregnant for a 4th time and they couldn’t do the tests, so we had to wait and see, but unfortunately we lost this baby too.

I always miscarried around 7-8 weeks.

After 4 miscarriages, I ended up getting pregnant again and the Dr at the fertility clinic had learned that there was an antibody in my blood, specifically called Lupus Anticoagulant. Basically, what this means is that my blood is a little thick and there were tiny clots which was not allowing blood flow to the baby and therefore things weren’t developing and no oxygen was getting through and the baby would die.

I was already about 6 weeks pregnant when the Dr found out about the antibody and a week away from the time I would usually miscarry, so I had to see a thrombosis Dr right away so they could decide what they wanted to do about thinning my blood. I was immediately put on Fragmin Injections (a needle to the tummy every day). I had made it to 8 weeks and then started to miscarry again!!! I was devastated BUT- I now knew what the problem was and would fully be prepared the next time I got pregnant. Unfortunately the Fragmin Injections weren’t started in time. The fertility Dr said to me, “do you know how lucky you are to have a reason why you are miscarrying? Some women never know why.” I knew I was lucky!!

So after 5 miscarriages, in December 2010, I found out I was pregnant again and immediately started Fragmin Injections as well as a daily dose of baby aspirin, progesterone suppositories and a super duper prenatal vitamin. 7 weeks passed, then 8 weeks, then 9 weeks…(that was a huge celebration), 10 weeks etc….

We were finally on our way to having a second baby!!!!!!!! I was referred to a high risk OB and had regular ultra sounds to track the baby’s growth.

At about 20 weeks we learned that we would be having a baby girl!! We were so excited. We had a son and now a daughter….people kept saying we would have a Millionaires Family!!!

Aside from feeling a little sick, the pregnancy was going well. In June I started having spells of vertigo, which apparently was unrelated to the pregnancy, but ended up having me leave work 3 months early.

I went in for a routine ultrasound at 33 weeks which was always followed up by a visit with my Dr. My husband didn’t come as he had been to a 3D ultrasound a few weeks before. This was just a typical visit.

When I was having the ultrasound the technician said she had to discuss one of the images with the Dr and would be right back. 15 minutes passed and I honestly didn’t think anything of it!! She came back and said they needed to do a scan on another machine because the machine she was using couldn’t get the right picture, still didn’t think anything of it…

When I went up to see my Dr, I waited in the exam room for about 30 minutes before he came in. When the door opened and I saw his face, I was very nervous.

He said that some things had shown up on the ultrasound and we needed to do further testing to understand exactly what was going on. He explained that both ventricles were enlarged in the baby’s brain and he thought it was likely something called Hydrocephalus which basically meant that there could be pressure on the brain and that there was a blockage and the fluid wasn’t draining properly and that at birth a shunt might have to be put in. BUT- he could not be sure so I had to have a fetal MRI right away.

2 days later I had a fetal MRI and we were meeting with a neurosurgeon right after to discuss their findings. It was at that moment that our world flipped upside down. They thought it was Hydrocephalus, but it was Complete Agenesis of the Corpus Callosum. The neurosurgeon said that he wasn’t the one to discuss this with and that we should speak with the neurologist so he could tell us what types of obstacles we would be facing and how this would affect our baby but basically said that our child would likely be disabled, have delays and challenges, anywhere from being almost normal to completely disabled, but he couldn’t say either way and that the neurologist would be able to give a better idea of what was ahead.

Then, as if things couldn’t get worse, my OB, by law, had to tell us that if after meeting with the neurologist and we were distraught by the news, we also had an option to terminate our pregnancy. WHAT!!!!!!!!!!!!!!!!!!!!! How bad was this? I could tell it was excruciating for him to tell us about this option, but from a legal standpoint, he had to. Some people only want perfect babies!!

My husband and I went home, we were broken. I was so disturbed that I was even thinking about terminating my pregnancy. After what it took to get here and how far along I was. We couldn’t talk to anyone about it because what if the neurologist said we were having a baby that would be a vegetable and have major health complications…do I really want her to live this way, can we live this way!! My mind was RACING!!! It was terrible. We didn’t even do the IPS screening to check for Down Syndrome and Spin bifida. We always said we could handle that.

Every time I felt my little girl kick, I felt like she was kicking me and saying, you better not get rid of me!!! It’s awful, but it’s true, she was living inside me and I had her life in my hands!!!

The Dr’s said not to Google, but I did anyway. I wasn’t looking for medical reports or Dr’s reports; I was looking for real people who had been through the same thing. This is when I came across this exact website. My husband and I read every single entry and cried the whole way through because we knew there was no way we would be terminating this pregnancy. These children are beautiful and full of hope.

I think it was all so overwhelming. Getting the news about what was wrong with our baby and then topping it off with an option to terminate!!! INSANE!!!

We had made the decision NOT to terminate before we had even met with our neurologist. We ended up meeting with him 2 days later. We were in a much better frame of mind and excited about our daughter again. Our visit with him went amazing. We had a list of questions, were in a better frame of mind to take in information and he was very thorough.

Of course as we all know, this diagnoses is not a cookie cutter diagnoses. You can have two children with two exact same MRIs and two completely different outcomes. The Dr said that based on his experience he would put our daughter on the mild end of spectrum with respect to delays, disabilities etc, with the disclaimer that he can’t be sure. This did relieve us a little and gave us a lot of hope. He said the reason her ventricles were enlarged is because the corpus callosum was missing and that they were basically filling up space.

The best way to explain this diagnosis is like this...

When you travel to the cottage, you take the main highway to get there, but, you can also get there by taking the back roads. So yes, the corpus callosum is the main highway, but the back roads work just fine also.
We finally were able to put this behind us and focus again on the arrival of our daughter. I mean we had already been through so much to get to this point!!

Time passed very slowly, my due date was September 1st. Then September 1st came and I was still waiting. My Dr agreed to induce me when I was a week over (THANK GOD)!!

I was induced the morning of September 8th and at 8:36pm, our beautiful daughter Kaycee Lynne was born. I will never forget the moment they held her up and I saw her face and heard her cry. This will sound superficial, and I don’t mean it to be, but she looked normal and sounded normal!!

The paediatricians were in the room and examined her and weighed her (9lbs 5oz) and I finally got to hold my precious girl. My son Keegan was in the waiting room. We wanted him close by because we knew Kaycee would be spending her first 48 hours in the NICU and Keegan wasn’t allowed in there, so the only way he could see her was if it was in Labour and Delivery.

When Keegan came in to meet his new sister, the first thing he wanted to do was look at her toes!! He couldn’t believe how tiny they were!! We were all in love with her and my husband and I were so in love with our family….we were finally complete.

After 45 min with Kaycee they had to take her to the NICU. I got checked into my new room and Craig wheeled me to the NICU so I could see my baby girl. It was hard to be away from her, but I knew she was where she needed to be.

After 48 hours, I was being discharged and knew that I might have to leave the hospital without Kaycee. This was awful. I couldn’t imagine going home without her. I went to the NICU and the Paediatrician was there and he told me that Kaycee was thriving. Her heart was functioning normal, her breathing and oxygen levels were perfect, she was showing no signs of seizures and she was eating like a champ!! (they actually didn’t have diapers that fit her, they only had newborn diapers and we needed size 1…most babies are premies in the NICU). We were allowed to take our baby home!!!

As we are walking out of the NICU with Kaycee in her car seat, I put my hand on Craig’s arm and stopped him, and I said “This journey is finally over”. After 5 miscarriages, and a crazy ride through my pregnancy, we finally have everything we wanted and more.

As I type this, Kaycee is about 5 ½ weeks old. She is as normal and healthy as a newborn could be. I sort of told her she had big shoes to fill because Keegan was such an awesome baby so I think she has really been trying!! She has been following light and sound since about 2 weeks, started smiling at 3 weeks and cooing at 4 weeks. Her head and neck are very strong. I know this is early, but when I look into her eyes, she is connecting with me, she is so engaged. I feel like Kaycee is going to surprise us all!! We are going to push her to be the best she can be. We had to fight to get her here and we will continue to fight for her for the rest of our lives. She is my little miracle.

My son, my husband, our family and friends were the reason we made it through this! We are so fortunate to be surrounded by such amazing people. We always tried to look at the glass half full and I truly believe in the power of positive thinking!!!

I hope our story helps someone out there the way the other story’s on this website helped me. If it does, take the time to post your story, because it is worth it.

Kaycee and her big brother Keegan

Side note: I also want to mention that in the same ultrasound that showed the enlarged ventricles, the ureter in one of Kaycee’s kidneys was enlarged and we are having some tests done to see if urine is going from the kidney to the bladder then back to the kidney. She is on a prophylactic dose of antibiotics to prevent infection, but the Dr is pretty sure this will correct itself by the time she is 2, and if not, it can be corrected with a very un-invasive surgery. So it wasn’t a huge concern, but worth mentioning.


An UPDATE on Kaycee:

(written by Michelle, Kaycee's Mommy, on 5-13-2013)

"I wanted to send an update to let anyone know that has read our story how little Miss Kaycee is doing.

Basically, there has not been one single concern. She is 19 months old, has exceeded every milestone and she is the most chatty little thing you have ever heard, and keeps her big brother in line.

If I didn't know there was anything “missing” in Kaycee’s brain, I wouldn’t know.

I know that we are truly blessed to be on this end of the spectrum, as some children with the exact same diagnoses as Kaycee are not as fortunate.

By posting this, I am in absolutely no way trying to gloat at how truly blessed we feel, I am simply trying to offer one person a glimmer of hope in what may be their darkest moment. For me personally, finding out everything while pregnant and going through what we did, it was this blog that gave me hope and kept me on the positive side.

I hope this can help just one person!!!

Michelle

There are many different stories and outcomes of ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me (Sandie):
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and
Moms-to-Be stories out in the open in an effort to inform, encourage, support and help other moms (and dads) out there who are being told that their baby in utero has agenesis of the corpus callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Neuropsychological Evaluation - Got Questions?

A few months ago, in an ACC support group that I belong to,
there was a discussion in regard to Neuropsychological
Evaluations for kids who have Agenesis of the Corpus
Callosum.

Frequently Asked Questions by parents of a child with ACC:

1. What age should my child have a Neuropsych Eval?
2. What kinds of tests will they give my child?
3. What takes place during an Evaluation?
4. How will a Neuropsych Evaluation help my child?
5. How do they take the test results and apply it?

Because these same types of questions come up on a
regular basis by many parents who have a child with ACC,
I am sharing the detailed discussion here on the blog,
(with permission from the author-parent).

Parent of 7-year-old child with partial ACC writes:

"Here is a list of the tests she had done last November for
her neuropsych eval":

Wechsler Intelligence Scale for Children-4th Edition
Beery-Buketenica Development Test for Visual-Motor Integration
Peabody Picture Vocabulary Test-4th Edition
Expressive One Word Picture Vocabulary Test
Wide Range Achievement Test-4th Edition
Wide Range Assessment of Memory and Learning
Electric Finger tapping Test
Integrated visual and Auditory Continuous Performance Test
Conners-3 Parent/Teacher Rating Scales
Personality Inventory for Children-2nd Edition
Sentence completion Test

The parent diverts to another subject regarding school testing.

The school testing was to see if she qualified for an IEP. Her testing with the school showed she had rare IQ where her nonverbal was 40 points higher than her verbal, which for age 5 only 1% in the world has this score. Her actual performance score compared to where she should be, based on her IQ score, were anywhere between 18-35 points difference.

Parent resumes discussion regarding neuropsychological
testing in a private facility outside of the school.

If you want a thorough neuro-psych eval they usually don't test until
age 6.

It was the best thing for us to get our child testing. Her rare
scores were still there, the neuropsychologist expected it to switch
but they didn't.

Her nonverbal is in the gifted range while her verbal IQ is barely
in the normal range at 81. It did show she has ADHD focus and attention problems.

We found out through the testing that the angular gyrus in the brain
that controls the language part is affected by her ACC. Her auditory
and visual processing is affected. He gave us ideas and tips on how to help her and for the school.

Note: "angular gyrus" located above in green.
The specific wording pertaining to the language comprehension deficit and the angular gyrus, in the 7-year-old child's Neuropsychological Evaluation, states:

"Together with the previously referenced language comprehension deficiency seen through her performance on the Similarities subtest of the WISC-IV, this WRAT-4 difficulty on Sentence Comprehension suggests a specific problem in the region of the angular gyrus in the left cerebral hemisphere."

"Despite her language abstraction difficulty which suggests particular
difficulty in the functioning of the left cerebral hemisphere in the area
of the angular gyrus, there was no lateralized indication of brain dysfunction through either motor or sensory perceptual testing.
Thus, this appears to be a very limited and circumscribed cortical dysfunction. She has much more evidence of normal than abnormal brain functioning."

The Neuropyschological Evaluation further states:

"Her overall intellectual ability and many of her academic skills are entirely within normal limits and sometimes performed at above average levels. However, she has shown persistent and significant difficulty in language comprehension and abstract verbal reasoning that appears to include both spoken language and reading."

The parent of the 7-year-old child with partial ACC goes on to say:

At one point due to her reading decoding skills, they were talking about taking her out of resource for language. With the results of the
testing we had done, she was kept in.

We also found out she is in the mild to moderate range, 1.5 standard deviations for possible autism but not enough to give a diagnosis for autism. The testing as a whole gave us a clearer picture of who my
daughter is and insight into some of her little quirks.

She will get testing done every 2-3 years based on her scores. Our
insurance paid for all but our copays since it was based on a medical diagnosis and not for ADHD testing. You would have to check with your insurance to see if they will pay for testing and how much. This is one testing I have never regretted doing and so glad we did it.

Where we did the testing, we came in for the initial visit so he could meet my child, talk to me about her history and what we were looking for, and for him to decide which tests to perform. Then about 2 weeks later, we were lucky and had a cancellation, we went in for the testing.

We were there from 8:00 to about 4:00 with a lunch break and mini breaks during testing if she needed it. While Emily was testing, I was filling out questionnaires such as Connors-ADHD, and another one that had 200 or so questions-can't remember the name but asked questions for emotional, behavioral, autism questions.

Then 2 weeks later I went back alone for the psychologist to go over the testing.

Some neuropsychologists spread the testing out over 2 days.

Parent of a 5-year-old child with ACC asked if they can get
good test results from a child who is young and fidgety
with an attention span that is not so good?

Reply from Parent of 7-year-old with ACC:

When is his 6th birthday? Many times Neuropsychologists have a
long waiting list or several months before the first appointment so it
wouldn't hurt to call and make the appointment now for right after
his 6th birthday if you are really interested.

In my personal opinion, this was one of the best things I could have done for my child.

This same parent goes on to say:

My child does take a low dose ADHD meds for attention and focus as
well as cognitive skills while in school. She takes 2.5 mg adderall
twice a day. Not long after we started the meds, she jumped by
leaps and bounds in her learning skills at school. She started
taking meds halfway through Kindergarten.

If you have any more questions, please feel free to email me at weimerse@cox.net

Mom of 7-year-old child, partial-ACC, colpocephaly, chiari 1, ADHD, strabismus, hydrocephalus w/VP shunt"

Thank you very much to the parent of a 7-year-old child
with partial ACC who graciously gave permission for me
to share her experience and quote input here pertaining to
her child's Neuropsychological Evaluation for others
to read and also for sharing her e-mail and offering to
answer questions.

In addition, you can read more about Neuropsychological
Evaluations in a previous post that contains test
results from an 11-year-old child's Neuropsychological
Evaluation and also provides additional input from other
parents who have a child with Agenesis of the Corpus
Callosum.

If you have something that you would like to add, please
consider posting your comment.


Medical Disclaimer: Please seek the advice of a qualified
medical doctor regarding any medication and dosage for a
person. Every person with ADHD is different and responds/reacts
differently to medications and dosage amounts.
Some people with ADHD do not require medication.