|
Post by matthewsmom on Aug 17, 2009 20:58:38 GMT -5
hannahsmom, You're welcome. I hope you had a very special day celebrating. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 17, 2009 20:56:51 GMT -5
dakota, You're welcome. I'm glad you found it useful. My thoughts are with you as you absorb and go over in your mind all that you have recently learned with respect to your son's diagnoses. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 16, 2009 0:20:30 GMT -5
hannahsmom, I love the story too! I'm so glad you love it and I'm so thankful that Cherry (Mom to Kevin who has ACC) allowed me to share the story here for others to read. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 15, 2009 14:21:34 GMT -5
Meet Adults with ACC Stories If you are an adult who has ACC or a corpus callosum disorder, I invite you to share your own personal story on the ACC blog. I am the mom of Matthew. He is 15 years old and he has complete ACC. He was diagnosed with ACC at four months old by a CT scan. In April of 2009 I created an ACC blog. I wanted to create a site that could offer positive information, teaching tools, etc and an interactive place where other people could post comments and give their own valuable and insightful information in an effort to help others. One of the topics that was created is: Meet Adults With ACC Lynnea, the person who founded ACC Awareness Association, Inc. (ACCAA) and who also created this wonderful ACC Message Board forum very graciously wrote her own personal story about life with ACC and shared it on the ACC blog. I can tell you that Lynnea's story on the ACC Blog sparked the interest of MANY people who read (and continue to read) it. Her story is especially helpful and insightful to parents who have a child with ACC but is equally as helpful in reaching out to other adults who have ACC and helps give teachers a much better understanding of ACC (as seen through the eyes of a grown adult) what it was like as a child with ACC in school. The ways in which your own story can reach other people is endless... If you are an adult who has Agenesis of the Corpus Callosum or a corpus callosum disorder, I invite you to tell your story so that others can gain insight and see through your very own perspective what it is like to have ACC, to read your own personal struggles, your accomplishments and whatever you may choose to share about yourself. If you are an adult with ACC who is interested in sharing your own personal story on the Agenesis Corpus Callosum blog please send me an E-Mail: hope@aracnet.com or you can send me a PM (Private Message). Here are some things to consider including when writing your own story that give insightful and extremely valuable information to other people who will read it: When did you find out that you have ACC? How old? What did you struggle with in school? What did you enjoy most and do well at in school? Did you struggle with social skills in school? Did you make friends easily in school? Do you still struggle today with social skills as an adult? Did you attend a mainstream classroom? Did you receive Special Ed resource help? Can you ride a bike and drive a car? Did you attend college? Did you get a degree? Do you have a job and if so what do you do? Are you married? Single? Do you have children? How does ACC affect you today as an adult? What do you enjoy doing the most in life? What are you passionate about? And, if any of you would like to read Lynnea's story...Meet Lynnea - An Adult with ACC....you can read it below: agenesiscorpuscallosum.blogspot.com/2009/06/meet-lynnea-adult-with-acc.html Thank you again, Lynnea, for sharing such a wonderful story. *hug* If you are the parent of a child with ACC or someone else reading this who is interested in reading and learning more about the perspective of an adult who has ACC please show your interest and encouragement (by posting a reply here) and let the adults who have ACC know HOW MEANINGFUL, helpful and insightful their stories are and how interested you are to hear their own personal story. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 14, 2009 22:26:39 GMT -5
Araceli, You didn't just yap away...lol And, I absolutely get you and what you are talking about. I get and relate to the feelings you're having, and for feeling bad for having some of those feelings and questioning IF you're bad for feeling them. Ohhh boy do I get you and THOSE feelings!! *hug* you wrote: "I think that although it has been a slow process of coming to terms with her conditions and ACC I believe I am now coming to terms I want to say completely but wont." Coming to terms with and accepting that your child has ACC and moving through ALL THOSE FEELINGS is such a process and different for each person. There is a process of grieving and it's so necessary to go through those feelings (as ugly and uncomfortable as some of them are). I can honestly say that, for me, the beginning few years (and especially the first year after my baby, Matthew, was diagnosed with complete ACC at four months old) were the hardest. I was a mess...an emotional mess. Just when I would think I was doing better something would happen to set off my tears again and throw me right back into THOSE feelings. But over time (and the amount of time is so different for everyone) it gets better, becomes easier to deal with and the once intense pain of coming to terms with it becomes dulled. However, I still deal off and on with various issues and feelings that pop up at different times along our journey that can open those old wounds and I still feel the sting of pain but just not as deeply as I once did in the beginning years. Even today (and with Matthew being 15 years old) I catch myself wishing he could run and play with the other kids, that he could get on his bike and ride around the neighborhood with friends, that he could eat a cookie or take a bite from a banana, then chew and swallow it all by himself without the risk of choking, that he could talk to me (like he does in my dreams) and do all the things that a typically developing child is able do at his age. you wrote: "Is it bad to have days of denial even after 17 months?" No, not at all. I had them too. It's not bad. It's normal! "Days you wish you could make it all go away?"
I had those days and those same feelings. I still have those days even now sometimes. I love what (acmunchkin) April said about how she wouldn't want to change her child but she would in an instant remove his struggles. THAT is a beautifully, brilliant way to put it. Thank you for allowing your very open and honest feelings to spill out from your heart and for sharing them with all of us here. Brianna is a little cutie and I love that picture you posted of her! Thank you. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 14, 2009 17:09:05 GMT -5
Lynnea, THAT is such great news. CONGRATULATIONS that ACCAA is now an official non-profit corporation. I am also very excited about this news and for you and the board members of ACCAA. I am going to make a post right now in the ACC-Listserv regarding the detailed information for the upcoming Golf Tournament fundraiser for ACCAA so that the many people within that e-mail group will become aware of this upcoming event. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 14, 2009 16:33:56 GMT -5
hannahsmom...(Leanne), Have a very very Happy Birthday!! Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 14, 2009 2:27:01 GMT -5
Sharon, It's so great that music touches your son, Andrew, in such a positive way and that he is so passionate about music and dancing. It could very well be a therapeutic musical experience for Andrew when he is able to express himself through music. Music has the ability to reach and touch people on so many different levels. Music therapy is so individual and varied for each person that there is no way to really define what a typical music therapy session is because it is different for every person. You can find more information about music therapy at the American Music Therapy Association, Inc. www.musictherapy.org/And additional, specific information can be found below: www.musictherapy.org/about_ind.htmlHow to locate a music therapist in your area: www.musictherapy.org/find.htmlSandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 13, 2009 19:59:00 GMT -5
Never Limit Your Child's Capability to Learn I belong to another ACC e-mail support group and recently a mom shared a very heartfelt story that is so moving about one of her twin boys who has complete ACC. I asked her if she would allow me to share her story with everyone here and she graciously gave her permission. "Hi everyone, Just wanted to share something with all of you. Kevin has always been interested in music. He tried playing in the band when he was in the seventh grade, but after a semester, his band director took aside and told us that he was not able to play in the band. He said that he just didn't have enough coordination to master the instrument. We had been told by his drs. that this was probably going to be true when he was diagnosed at 8 yrs. old. So, we weren't surprised. His twin brother played the tuba all through high school and Kevin started being the football trainer and continued all through high school. Casey, his twin, is not C-ACC like Kevin. Casey became interested in playing the guitar when he was in high school and got pretty good at it by teaching himself. Kevin wanted his brother to teach him how to play also. But Casey didn't spend a lot of time teaching him and got very frustrated. so that was ended quickly. Now at 22 yrs. old Kevin met a friend that is in a band who is looking for a guitar player. He told Kevin that if he wanted to join he would teach him to play. The first advice he gave him was to buy a left-handed guitar. He started giving Kevin lessons once a week. He has been teaching him for about 3 months now. I heard Kevin playing the guitar in his room today and he was excellent! He has surpassed his brother's guitar skills. What a thrill it was to listen to him play. Moral of the Story: Never limit what your child cannot accomplish because a dr. said it wasn't possible. I am definitely guilty of that. But I am working on it. Cherry, mom the Kevin, C-ACC, 22, Casey 22, and David, 26" Thank you, Cherry, for putting into words such a beautiful, touching story about your son who has ACC with a Moral that speaks a powerful message to my heart. Thank you for sharing it with other people. I am so happy that Kevin learned how to play the guitar and that he had someone willing to take the time to teach him. Your story makes beautiful music in my heart. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 13, 2009 18:08:08 GMT -5
Laura,
I'm glad you liked the story. I agree with you on everything you said and I feel the same way. I was actually reading something today on someone's blog regarding the "R" word and while reading I found myself becoming more upset with how the author wrote that they would not ever call a mentally challenged person THAT word and yet in the same breath justified the right to use the "R" word to lash out at people who are not mentally challenged. I just shake my head and think how can THAT be justified??
I am thrilled that April (acmunchkin) gave the link to the Public Service Announcement video because, like you, I was also curious and wanted to have a look.
Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
|
|
|
Post by matthewsmom on Aug 13, 2009 17:50:35 GMT -5
WOW! That is an excellent video clip with a powerful message! I really like it. Thank you, acmunchkin, for sharing that with all of us. Because there are some people who are not able to view videos directly off the Youtube website/links I am going to post the actual video here in the hopes that everyone gets a chance to see this wonderful video.
|
|
|
Post by matthewsmom on Aug 13, 2009 12:44:59 GMT -5
Riding a Two Wheel Bike: Some kids who have Agenesis of the Corpus Callosum struggle with learning to ride a two wheel bike. Awhile back I did a blog post about this topic and I received input from a parent who has a child with ACC who highly recommended a summer camp program called: Lose The Training Wheels Since then several other parents, who also have a child with ACC, are saying wonderful things (in another support group I belong to) about this summer camp program. They have had successful results (and their child with ACC has learned to ride a two wheel bike) after having their child attend the summer camp program - Lose The Training Wheels. Lose The Training Wheels is a summer camp program that provides camps across the US and in Canada. If you are interested in finding out more information you can go to their website and the Lose The Training Wheels Camp schedule below: Lose The Training Wheels www.losethetrainingwheels.org/Camp Schedule: www.losethetrainingwheels.org/schedules.htmlIf any of you are interested in reading the ACC blog post about Riding a Bike you can find it at the link below. It also contains information about an adaptive trike, using the undersized bike approach to learn how to ride a two wheel bike and gives input from parents who have a child with ACC: agenesiscorpuscallosum.blogspot.com/2009/05/riding-bike.htmlSandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 12, 2009 18:48:44 GMT -5
Araceli, Thank you for your nice words. I look forward to receiving Brianna's upcoming two year old Birthday pics and to hearing all about the first time she SAYS "momma". I can't wait. A great BIG Thank You to April (acmunchkin) for the post you wrote that was the inspiration for Araceli's introduction of her little girl. It's so wonderful, I think, that each person here is able to offer something and how a positive ripple effect takes place as a result of what each person shares. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 12, 2009 18:09:03 GMT -5
Hi Sharon, Welcome to the ACC Message Board. I'm so happy that you found your way here and that you are able to connect the dots (for the first time) as well as connect with other parents and people who can relate and understand what it is like to have a child who has agenesis of the corpus callosum. Anything you may wish to share here is received with open arms so read to your heart's content and feel free to express your thoughts, fears, concerns, questions, advice, joys...anytime. It's great to have you be a part of this group. Sandie *Mom to 15 year old Matthew with complete ACC* P.S. Please feel free to register and join the Message Board if you like.
|
|
|
Post by matthewsmom on Aug 11, 2009 18:11:16 GMT -5
dakotah, Thank you for letting us know that a diagnosis of hypoplasia of the corpus callosum for your son WAS confirmed by Dr. Sherr. I am glad that you didn't have to wait any longer and that now you know. I'm so sorry that you were never informed of his other diagnosis (missing anterior commissure). I can't tell you how many times I have seen other parents mention that they were not given a medical diagnosis for their child (that was clearly written in the medical reports) and the same goes for some adults who have ACC and who found out accidentally by picking up a copy of their medical reports and reading it for themselves. That causes me a great deal of anger. I even wrote a blog post about this particular topic on the ACC Blog. I'm so glad that there are doctors like Dr. Sherr who disclose ALL the medical information and diagnoses to their patients and that you found out that your son is also missing his anterior commissure. I'm sure you are probably already aware that the corpus callosum is the largest commissure/pathway (having over 200 million nerve fibers) that connects the two hemispheres of the brain and allows for communication between the right and left sides of the brain and that the anterior commissure is a MUCH SMALLER pathway that also connects the two hemispheres of the brain. I am glad to hear that you will be able to take your son to see Dr. Sherr at the end of August. I'm posting two pictures of where the anterior commissure sits in location to the corpus callosum. (2 different views of the brain) Sandie *Mom to 15 year old Matthew with complete ACC*
|
|