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Post by matthewsmom on Jun 26, 2010 15:17:38 GMT -5
Hi Brandi, Welcome. I'm so glad that you're here as part of this ACC message board. Thank you for sharing a little bit about your one year old child, Caiden, and for sharing his very cute picture in one of your posts about Caiden's strengths: accawareness.proboards.com/index.cgi?action=display&board=talk&thread=15&page=1#331Just so you know, I sent you two private messages on June 24th. I look forward to hearing more about Caiden and anything that you may want to share. Sandie *Mom to 16 year old Matthew with ACC in Oregon*
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Post by matthewsmom on Jun 6, 2010 21:37:48 GMT -5
Renee, You're welcome. I can understand your frustration. Just reading what you wrote causes me to get upset for you. You know, there are some parents who have a baby/child with ACC who end up getting a new pediatrician or specialist for the same kinds of reasons that you are mentioning. What you said about educating them is exactly what many other parents who have a child with ACC have to do....and if the doctors who are seeing Harley now don't want to become educated or listen to you...then there are so many other doctors out there who will. Sandie Thank you for your suggestions. Harley is actually being seen by a speech therapist for swallowing issues and I have recently discussed her picking him up for speech as well. His team of therapist are such a blessing, but it is so difficult for me to get his pediatrician to refer him to any other specialists for further testing. They believe that i should just wait a little longer until he is 2 and then we can deal with the issues that still remain. This is my biggest frustration, but at least I now know where to look for more information to "educate" them with. Renee
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Post by matthewsmom on Jun 5, 2010 17:13:58 GMT -5
Renee, Something else that I forgot to mention is that music is a wonderful way to help a child who has ACC learn something. Words alone are great but there is something significant about adding those words to music and a song that often times helps to create an easier connection to learning words. I have used music often with my own child, Matthew, who has ACC since he was very little. I will sing my own made up songs to help him learn body parts and other things. I have seen other parents who have a child with ACC say this same thing about how music helps to teach their kids more easily and more effectively than words alone. Once my child has learned something through the use of a song set to words...then I have been able to slowly go back to just saying the word without the music and singing. Sometimes I may need to go back to singing the song to help jog his memory but then I will say the word again and he will know and touch his body part by my words alone (such as Matthew, "touch your knees".) If he isn't able to do it on the first try with words alone...then I will go back to singing our song about knees. The second time I just ask him with words. To help teach Harley "come to mama please" you could try a little song using the tune of: "Are you sleeping, Are you sleeping, Brother John, Brother John" Morning Bells are ringing, Morning bells are ringing, Ding ding dong, Ding ding dong." to help teach him but use your own words or try singing something like this: Come to mama, Come to mama, please, please, please come here please. Harley, come to mama Harley, come to mama please, please, please come here please. If you click on the link below it will take you to an ACC document that was written with the input from many parents who have a child with ACC who talk about the power of music and learning for their child: accawareness.proboards.com/index.cgi?board=talk&action=display&thread=61Sandie
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Post by matthewsmom on Jun 5, 2010 13:44:42 GMT -5
Hi Renee, My first thought is that since you said that Harley was only recently diagnosed with ACC a few months ago do you know about Early Intervention? I'm not sure where you live but in the United States Early Intervention therapy services is provided to babies/kids from birth to 3 usually at no cost. It may not always be called Early Intervention from each state to state. Some states operate the same program but under a different name. Has your child's pediatrician or other doctors/specialists told you about the Early Intervention program or began the enrollment process for Harley? He will qualify for services (which include physical therapy, occupational therapy, speech therapy and other services) on his diagnosis of ACC. Early Intervention will do an assessment on your child and determine what type of help and therapies he needs and then a therapist will usually come right to your home to provide therapy services typically once a week for free. This would be a great way to receive speech therapy services to help promote speech for Harley and help you as well with ideas of how to work with him. My second thought is that since you mention you aren't sure if Harley may have a hearing problem...has Harley been seen by any specialists to rule out other medical conditions that can sometimes be seen when a child is diagnosed with ACC? Has Harley had an elaborate hearing test performed or been seen by a pediatric ear, nose and throat doctor? Some kids who have ACC do have hearing issues. Some kids who have ACC have auditory and/or sensory processing issues. They may hear well but just are not able to easily process what they are hearing. Has Harley been seen by a pediatric opthalmologist? It is very important that a child who has ACC be seen by a very good pediatric eye doctor who is highly recommended. The optic nerves and other eye issues should be ruled out. Here is a website that tells more information about specific specialists and tests that are typically performed after a baby/child is diagnosed with ACC or a corpus callosum disorder: scenicbeauty.tripod.com/WhatComesNext.htmlMany parents who have a child with ACC say that their child has taken longer to learn something and that even when they are teaching them something...it appears that they aren't paying attention or understanding but then one day...it just clicks for the child and they learn it. It may take months or a year or more but don't ever give up on teaching Harley because more than likely, like most kids who have ACC, he will be on his own timetable for when he will do and learn things. He will amaze and surprise you. With time and patience, you will adjust to the ways he learns and be more comfortable with how to help him learn. It also helps so much to have the support and encouragement of other parents who have a child with ACC. The ACC Listserv (that I mentioned to you in my private message) is a wonderful avenue to connect with A LOT of other parents who are able to understand your feelings, concerns and can help give advice, suggestions, or just validate your feelings. ACC Listserv e-mail support group: lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1 It's wonderful that Harley has an older brother. The things that he will learn from watching his older brother and interacting with him are so helpful for Harley's process of learning new things and his development. As for his understanding and following directions...it may just take him longer. Sometimes a child with ACC needs to hear the words several times, needs encouragement, needs modeling to help them understand what you are saying to them and asking of them. The child who has ACC may need the words to be very simple and repetitive to help them learn and may need the same, exact words to be repeated several times to learn something. The child who has ACC may need to hear the same word or phrase said each time until it connects for them and they are finally able to understand it. Trying to get Harley to come to you will take patience and probably some work to help him put it all together, to learn and process what your words mean and then to make the connection and do what you are actually asking him to do. I remember it took my child, Matthew, a long time to be able to follow very simple directions. He was much older than Harley before he began to follow very simple one-part directions. Not only will Harley need to know the words you are saying but he will need to learn what the word(s) mean and connect the word to an object to help him understand language and to then be able to put together what you are asking him to do. You may need to put something in your hand that he really likes (bottle, toy, etc) to get his attention, then say "get your bottle" or whatever phrase/words you feel are right for him. Then wait and say the words again. It may take A LOT of encouraging, patience and repetition for him to finally understand what you want him to do. It definitely helps when a child is highly motivated by something to help the learning process along more easily. Of course, there will also be those typical baby/toddler times when they just don't want to do what you want them to do and they would rather do their own thing. Determining that is sometimes more difficult when you have a child with ACC...but you are his mama and you know him best so just trust your gut feelings and know that in his own time, and in his own ways...he will learn and continue to make progress with your help, encouragement, patience and through therapies and guidance from specialists who work with you and him to promote his development. Sandie *Mom to 16 year old Matthew with ACC in Oregon* P.S. I sent you another Private Message (PM). My son is 15 months old with C-ACC. He can say 2 words...dada and buba. I think I have heard him say mama, but that could just be my wishful thinking. It seems to me as if he is stuck in the stage where everything is dada. If he wants something its dada. If he is asked a question its dada. He does babble and make noises, but my concern is how much of what we say does he understand? I make request like, "Harley come to mama please," and he looks up at me and even turns in my direction, but he doesnt attempt to crawl anywhere near me. He usually just turns around and starts doing whatever it was he was doing. I have no idea what to make of this. His older brother was so completely different. At 15 months he probably knew at least 10 words and was following directions. I dont think he has a hearing condition, but i seriously wonder if he is able to understand us. Does anyone know any ways I can help with his understanding?
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Post by matthewsmom on May 24, 2010 15:53:17 GMT -5
Hi April, THAT is so great to hear. You (and Kyle too) must be lovin' every second of his newfound freedom and steps. I'm so happy that Kyle is walking!!! Sandie *Mom to 16 year old Matthew with ACC in Oregon*
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Post by matthewsmom on May 20, 2010 0:05:14 GMT -5
Meet Patty - An Adult with ACCI recently received an e-mail from an adult, Patty, who has ACC, who wanted to tell her story for others on the ACC blog. Patty is also a teacher. I was so happy to hear from Patty when she e-mailed me and, having just finished Patty's story, I am really excited to be able to share Patty's story with you. Patty's Story is insightful and enlightening. Patty shares her life with ACC and how it affects her and she does so in a unique and interesting way that I think will speak to so many parents who have a child with ACC and will also, more than likely, cause some adults who have ACC to relate to one or more things that she says. If interested, you can read Patty's story at the direct link below: Meet Patty - An Adult with ACC May 19, 2010 agenesiscorpuscallosum.blogspot.com/2010/05/meet-patty-adult-with-acc.html If anyone would like to leave a comment for Patty you can do so directly on the ACC blog by clicking on the "comment" link. Or, you can also send your comment for Patty directly to my e-mail: hope@aracnet.com and I will be sure that Patty gets it. I hope that you have a wonderful day. Sandie
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Post by matthewsmom on May 20, 2010 0:02:35 GMT -5
Meet Patty - An Adult with ACCI recently received an e-mail from an adult, Patty, who has ACC, who wanted to tell her story for others on the ACC blog. Patty is also a teacher. I was so happy to hear from Patty when she e-mailed me and, having just finished Patty's story, I am really excited to be able to share Patty's story with you. Patty's Story is insightful and enlightening. Patty shares her life with ACC and how it affects her and she does so in a unique and interesting way that I think will speak to so many parents who have a child with ACC and will also, more than likely, cause some adults who have ACC to relate to one or more things that she says. If interested, you can read Patty's story at the direct link below: Meet Patty - An Adult with ACC May 19, 2010 agenesiscorpuscallosum.blogspot.com/2010/05/meet-patty-adult-with-acc.html If anyone would like to leave a comment for Patty you can do so directly on the ACC blog by clicking on the "comment" link. Or, you can also send your comment for Patty directly to my e-mail: hope@aracnet.com and I will be sure that Patty gets it. I hope that you have a wonderful day. Sandie
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Post by matthewsmom on May 19, 2010 23:52:24 GMT -5
Lynnea, Thank you for your very sweet note. It was so kind of you to take the time to send such a nice note. It is my pleasure and a privilege to share the stories of adults who have ACC on the blog. Sandie *Mom to 16 year old Matthew with ACC in Oregon* P.S. Congratulations on your college degree!!
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Post by matthewsmom on May 17, 2010 1:28:44 GMT -5
Steve's Story: An Adult with Hypoplasia of the Corpus Callosum agenesiscorpuscallosum.blogspot.com/2010/05/steves-story-adult-with-acc.htmlI became aware of Steve on another ACC e-mail support group that I belong to. I was fascinated to read the things that he reveals in the support group with respect to how he found out that he has a thin (hypoplasia) corpus callosum so I asked Steve if he would be willing to share his story on the ACC Blog. I was thrilled when I woke up one morning to find an e-mail story from him. Have a look for yourself (at the link above) and it would be great if you could please take a couple minutes of time to leave a comment on the ACC blog for Steve at the end of his story. I am very thankful that he took the time to share his story. Sandie *Mom to 16 year old Matthew with ACC in Oregon*
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Post by matthewsmom on May 17, 2010 1:22:15 GMT -5
Steve's Story: An Adult with Hypoplasia of the Corpus Callosum agenesiscorpuscallosum.blogspot.com/2010/05/steves-story-adult-with-acc.htmlI became aware of Steve on another ACC e-mail support group that I belong to. I was fascinated to read the things that he reveals in the support group with respect to how he found out that he has a thin (hypoplasia) corpus callosum so I asked Steve if he would be willing to share his story on the ACC Blog. I was thrilled when I woke up one morning to find an e-mail story from him. Have a look for yourself (at the link above) and it would be great if you could please take a couple minutes of time to leave a comment on the ACC blog for Steve at the end of his story. I am very thankful that he took the time to share his story. Sandie *Mom to 16 year old Matthew with ACC in Oregon*
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Post by matthewsmom on May 12, 2010 1:28:12 GMT -5
The ACC Reading and Comprehension document was created with the help and input from many parents who have a child with ACC and also from some adults who have ACC. I am so thankful to each person who shared information about ACC and reading/comprehension issues. The document consists of personal stories about kids who have ACC and the challenges they face with respect to reading and comprehension. It also provides a few personal stories from adults who have ACC who reveal their input as it pertains to reading and remembering what they read both as a child in school and today as an adult. ACC Reading and Comprehension: agenesiscorpuscallosum.blogspot.com/2010/05/reading-and-comprehension.htmlIt is my hope that the information provided will be insightful and help enlighten teachers and other parents about reading and comprehension challenges that some people with ACC struggle with and that it will also offer help, advice, positive teaching strategies and potential resources. If you did not get a chance to give your input or if you have something that you would like to share please feel free to leave a comment at the bottom of the ACC document. You can also contact me directly through e-mail: hope@aracnet.comSandie
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Post by matthewsmom on Apr 14, 2010 17:52:01 GMT -5
Hi Cressida, I am soon to be finishing the ACC Reading and Comprehension document but I have a couple questions to ask you. Awhile back you gave permission for me to use your input about your child and reading and comprehension that you posted here on the message board. Before I am able to complete the input you shared I need to get in touch with you hopefully so I can ask you some questions. I sent you a private message here and also an e-mail to your yahoo account but have been unable to connect with you. If you happen to see this message here please let me know how I can get in contact with you. You can either leave me a note here on the board, in my private messages here, or you can e-mail me directly: hope@aracnet.comI hope all is well with you and Joshua and your family. Thank you very much. Sandie *Mom to 16 year old Matthew with ACC in Oregon USA*
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Post by matthewsmom on Mar 11, 2010 18:47:42 GMT -5
Hi Cressida, Thank you very much for your note and for your permission to quote you in the ACC Reading and Comprehension document. Your input is so valuable and appreciated. I look forward to hearing more from you about various topics concerning ACC and your child, Joshua. I am sending you a private message in addition to this note here. Please feel free to e-mail me anytime: hope@aracnet.comSandie *Mom to 16 year old Matthew with ACC in Oregon
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Post by matthewsmom on Mar 10, 2010 14:54:13 GMT -5
Hi Cressida, First, Welcome to the ACC Message Board. I just read your introduction post about your son, Joshua, who is 10 years old and who has partial ACC. Thank you very much for taking the time to respond to the Reading and Comprehension post. It's so great that Joshua is reading and doing better in school. I love that you discovered that he is a visual learner and that he really likes and needs to sometimes draw something after he reads about it. I would like to know if you would allow me to quote what you wrote and include it (anonymously) in the ACC Reading and Comprehension document? If you like, you can send me an e-mail: hope@aracnet.comThank you for your consideration. Sandie *Mom to 16 year old Matthew with complete ACC*
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Post by matthewsmom on Feb 14, 2010 19:00:28 GMT -5
Hi Everyone, The next document about ACC & Education that I am working on is about Reading and Comprehension. In an effort to give teachers and others a very good idea of the issues surrounding reading and kids who have ACC or a disorder of the corpus callosum, I would like any and all input from you regarding your own child or from the adults who would like to share any particular reading issues and/or comprehension issues from their own perspectives. It is my hope that the information shared in the ACC & Reading document will give insightful and helpful information to teachers as well as parents and possibly even adults who have ACC. I want the document to reflect that some kids who have ACC learn to read fine with little problems and how other kids with ACC learn to read best by sight reading and other methods, while some kids struggle to learn to read, etc. It appears that there are MANY kids (and adults too) who have ACC who struggle with remembering what they read. I would like to address this particular concern in depth so I would appreciate LOTS of input from you about your own stories. What has helped you (as an adult with ACC) or your child remember what they read? What has not helped? Whatever you can share about reading comprehension is a huge help and I know it will help SO many people and give teachers so much insight. I have seen some adults who have ACC mention that they still struggle today with remembering what they read and they need to read something two and three times to remember it. While I want to focus on the reading comprehension aspect of reading, I also want to address any and all other issues concerning reading so please feel free to give details, ramble on as much as you would like and give any and all input. I welcome it all. I want to address reading issues that are sometimes seen with kids/adults who have ACC or a disorder of the corpus callosum and I also want to list various tips and ideas to try based upon your own experience. This way it will not only give the readers an idea of what possible things to look for in a child who has ACC with respect to reading but it will also offer possible teaching methods and ideas that may be of help and aid in a child's learning process. You can send your input here to the Message Board or e-mail me directly if you like: hope@aracnet.com I am so grateful to each of you who are willing to take the time to share your knowledge and experiences because without the help and input from people like you this document would not be possible. Thank you very much. Sandie *Mom to 16 year old Matthew with complete ACC in Oregon USA*
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