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Post by matthewsmom on Jul 8, 2009 18:13:51 GMT -5
The NODCC Conference for 2009 will be held on: August 14 - 16 in Indianapolis, Indiana at the: East Marriott Hotel 7202 East 21st Street, Indianapolis, IN 46219 Direct Phone Number to Hotel to book a room: (317) 352-1231 (use group code: NODNODA when booking) $109.00 per night More information about the Conference can be found at the NODCC website: www.nodcc.org/Conference Schedule: www.nodcc.org/index.php?option=com_content&task=view&id=102&Itemid=202Adults With DCC Schedule: www.nodcc.org/index.php?option=com_content&task=view&id=139&Itemid=3292009 Conference Facts: www.nodcc.org/index.php?option=com_content&task=view&id=141&Itemid=330Registration: (online registration is temporarily closed) To register for the Conference please e-mail: nodccconference@sbcglobal.net I was able to attend a Conference several years ago and I found it to be a wonderful and eye-opening experience. You meet so many families who have a child with ACC or a corpus callosum disorder and adults as well. The workshops offered were enlightening, in my opinion and I very much enjoyed listening to the panel discussions. Sandie *Mom to 15 year old Matthew with complete ACC* P.S. Because the above sites are secure you will have to copy and paste the url into your browser to view since they do not have the typical http.
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Post by matthewsmom on Jul 8, 2009 15:33:02 GMT -5
Kim (larkangel), Thank you for your note and for all that you share. I think that regardless of to what degree our children with ACC struggles and has challenges it is still difficult and very impacting whether a child is high functioning or not as high functioning. I think that along with it being so hard to understand why our kids with ACC can do some things very well and then struggle in other areas so much is also dealing with the pain it brings to watch them have such great challenges and the thought of the possible teasing (and teasing that does happen), the embarassment it causes our kids, etc. I think, as parents, we are constantly facing the challenge of helping our kids with ACC become as independent as they possibly can be and juggling while walking a tightrope balancing act to do our best to help them when they need help without helping them too much. At least it feels that way sometimes. This is just a thought with respect to Larkyn being embarrassed about not yet being able to tie her shoes. I wonder if maybe it would help alleviate the worry of her shoes coming untied if she wore shoes with velcro or maybe slip on shoes that did not need to be tied until she learned how to tie her shoes. God Bless both you and Larkyn. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Jul 6, 2009 19:10:04 GMT -5
I was reading a couple of the posts in another topic by moms (Kim) and (msp123) who mentioned that their kids need help with bathing and dressing. My own child, Matthew, is developmentally delayed in all areas. He requires a great deal of assistance with his everyday needs. I cannot leave him alone in the bathtub. It is not safe for Matthew. He is still like a young toddler in many ways and he is more content to just sit in the tub and play. I have a goal to help him learn to wash his different body parts and he will wash his tummy if I ask him to but only for a couple seconds. He definitely requires his dad or me to help him with all of his bathing needs. He is content to sit in the tub with a big plastic cup and scoop up water and then pour it out. He will pour it on himself and rinse himself off and for quite awhile he would pour it outside of the tub all over the floor. Matthew also needs help with washing his hands at the sink. He has to be told every step and I actually have to do hand-over-hand with him to get him to put his hands under the water, get the soap, rub his hands together, rinse his hands and dry them off. He will not automatically do this on his own. He doesn't comb his own hair and requires help with this as well. He requires assistance with washing his face. Matthew has huge aversions to things going in his mouth. It took me FOREVER to get a toothbrush in his mouth to brush his teeth. He will not brush his own teeth. I have to do it for him and he still does not like it. We take Matthew to a special needs dentist. I found that, for Matthew, it works better if we take him to get his teeth cleaned every three months. It helps him become more used to going to the dentist and having things in his mouth and it also helps because if we wait every 6 months the dentist is not able to get his teeth cleaned well enough since he doesn't like it. When he had to have cavities filled or a tooth pulled he had to go in to the hospital and his dentist did the work in the hospital while he was put under with general anesthesia. That is not something I want to do at all but for Matthew it is something that is required. Matthew is extremely limited in his abilities to dress or undress himself. His dad or I dress and undress him on a daily basis. He also wouldn't know what to pick out. He can't put on his socks. He CAN take them off though. He doesn't put on his shoes but he can take his shoes off. He is able to help take his shirt off if I first pull his arms out of the sleeves. Then he will take his shirt off over his head. He doesn't put his pants on or take them off without help. He can unzip zippers but cannot do buttons and cannot tie his shoes. I could not leave Matthew's clothes out and tell him to go get dressed. He wouldn't even know what to do. I need to talk him through it step-by-step and help him as well. I actually finished reading the book written by Kim Peek's father, Fran Peek called "The Real Rain Man Kim Peek" and it's quite interesting how Fran says that his grown son (a mega savant who has ACC-as well as other medical conditions) requires help with dressing himself. He said that Kim would not line up the buttons on his shirt and he may only have one shoe on, etc. His dad also said that his son requires help with shaving and bathing and brushing his teeth. More information about Kim Peek with videos and his father's book can be found at the link below if anyone is interested: agenesiscorpuscallosum.blogspot.com/search/label/The%20Real%20RainmanSandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Jul 6, 2009 1:08:42 GMT -5
Kim, Thank you for your very nice note and for sharing your thoughts from your heart. Thank you also for sharing a little bit about your daughter, Larkyn. Welcome to the message board...it's a pleasure to have you here. Many parents who have a child with ACC say the exact same thing you wrote about...how their child gets along better with adults or kids much younger than them. That also goes for my own son, Matthew. I don't know if you're aware of the book that was written about ACC for children called "ACC & Me". It is about a 10 year old boy who has ACC and it was written by two moms who both have grown kids with ACC. The book is written on a child's level to help educate and explain what the corpus callosum is and what happens when it's missing. The boy in the book has trouble tying his shoes and other things. This could be a great way to bring to light what ACC is in your daughter's class if the teacher would be open to helping educate her classmates. You can get a copy of the ACC & Me book through the ACC Network or the National Organization for Disorders of the Corpus Callosum (NODCC). More detailed information about how to obtain a copy of the book is listed on the website below: agenesiscorpuscallosum.blogspot.com/search/label/ACC%20and%20Me%20BookIt's so wonderful that she is a social butterfly and isn't shy. I can relate to it being difficult to be understanding when other kids say or do things that aren't nice. I can still recall a particular time way back in pre-school when another child kept insisting that Matthew was a baby and only saw him as a baby rather than a kid like all the other kids in pre-school. I stayed as Matthew's aide in the classroom so I heard this and tried to say something but there was no way to convince the child that it wasn't nice or that he wasn't a baby so I just ignored it but it hurt me a lot. Now I know that the child was little and really didn't understand but at the time my emotions were raw and those kinds of things aimed directly at your child who can't help the way they are and the challenges they face just hurt. As for Math challenges for kids with ACC the problem of counting money is also mentioned. Some kids have had success in math by using a program called TouchMath. Parents have also said that counting money is a challenge. Many kids with ACC find it helpful to be able to use a calculator for math. I am including a recent list of teaching resources that was put together with input from many parents who have a child with ACC and some adults with ACC in case you may want to take a look: agenesiscorpuscallosum.blogspot.com/2009/06/teaching-resources.htmlI look forward to hearing more from you and reading more about Larkyn. You have such a way with words and you speak directly from your heart. Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
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Post by matthewsmom on Jul 4, 2009 19:42:41 GMT -5
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Post by matthewsmom on Jul 4, 2009 19:24:39 GMT -5
Please use this thread to post any helpful and informative websites about Agenesis of the Corpus Callosum or a corpus callosum disorder that you have found useful.
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Post by matthewsmom on Jul 4, 2009 18:51:16 GMT -5
Because agenesis of the corpus callosum or partial ACC has such a broad range of how it may affect a person there is no prognosis for what to expect when you are diagnosed with ACC.
There are some common things that tend to SOMETIMES be difficulties or challenges for people who have ACC.
Some of those challenges can be:
Reading comprehension - some kids and adults learn to read but they have a very difficult time and struggle with remembering what they read or being able to answer questions about what they just read.
Handwriting and taking notes - some kids and adults find it very difficult to use handwriting as an effective way to express their thoughts. They do much better if they are given the ability to type out their thoughts. They say that it slows them down if they have to try to put into words on paper what is in their thoughts. Some kids in school use what is called an Alphasmart to type rather than write.
Math - Some kids struggle with learning math. Finding a teaching method can be a challenge. A lot of repetition to learn math is usually required.
Social Skills - some kids and adults take things very literally and don't always understand the humor, irony or wordplay in something that someone says. They may have a difficult time reading social cues. Often times, kids with ACC are bullied at school and have a very hard time making friends and learning how to socialize with kids their own age.
A LOT of repetition to learn something - this is something that is mentioned frequently by many parents of kids who have agenesis of the corpus callosum. Learning something new requires a lot of repetition before the skill is finally learned.
Headaches - some kids and adults have very bad headaches and even migraines.
Problems recalling information - knowing something but not being able to get the right words out.
Learning to ride a two wheel bike - this can be a huge challenge for many people with ACC. Some who have ACC learn to ride a two wheel bike and some are not able to ride a two wheel bike.
Learning to drive a car - Some people with ACC are not able to learn how to drive a car. The ability to properly judge distance and lack of depth perception may be reasons for this. Some people with ACC do get their drivers license though and are able to drive a car.
Tying Shoes - learning to tie shoes for someone who has ACC can take a very long time to learn.
Playing Sports like Baseball - With the inability to judge distance and lack of depth perception, some people with ACC are not able to play sports like baseball due to the threat of serious injuries to themselves.
These are just a few things that I thought I would share for any of you who have ACC or who have a child with ACC who may want to comment.
Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Jul 3, 2009 19:13:35 GMT -5
lauras, Thank you for the great update! I am SO happy for you and Bethany that you were able to work out a plan to attend the church function and that they are open to learn about ACC and willing to work on how to make things go smoothly for her. I hope that she has a wonderful time. I couldn't agree with you more with respect to what you said about staying involved in your child's education. When my own child, Matthew, was attending public school I found that to be very necessary. I visited the classroom often, talked with the teachers often and knew what was going on, asked A LOT of questions, made sure that what was written in his IEP was being done, etc. In his 8th grade year I chose to remove him from public school and am homeschooling him now. All my best wishes to you and Bethany for a fun time at the church event. Sandie Thank you to everyone who is posting. Update: We talked to the Youth Director at church and he was excited to see Bethanys name on the list for the trip. We told him about Bethanys ACC and what they could do to help. We are so blessed. Our church family is so loving toward her. ANd the school system is very accomidating. To parents new to this: DO YOUR HOMEWORK! learn about your rights as a parent of a child with special needs Be involved with your child education. In USA, the law is main streamed as much as possiable. Most schools have a zero tolerance for bullying. SO that helps THis year was hard because 1-6th grade she was at a small country school. 100 students K-6th grade. This year she went to MIddle School. But I talked to School personel and they kept a watch on her. I also have a few "junior spies" her age. It really made a difference.
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Post by matthewsmom on Jul 2, 2009 23:39:03 GMT -5
Hi msp123, I am replying to your message that was on the General Board here since your first post about your daughter with all the details are mentioned on this particular board (ACC Parents). You are definitely not alone when it comes to not receiving information from a doctor regarding the diagnosis of ACC or what it means. This happens TOO OFTEN. More doctors need to become aware and research Agenesis of the Corpus Callosum so that they are able to better care for their patients who receive this diagnosis and give the parents necessary information. You are not the only one who isn't getting accurate medical information about ACC after a diagnosis. This type of thing happens far more than it should and makes it all the more apparent how much awareness about ACC and corpus callosum disorders needs to happen. I can give you information based upon what I have learned from my own son's team of medical doctors regarding ACC over the past 15 years and from talking/writing with other parents who have a child with ACC. YES, agenesis of the corpus callosum IS a diagnosis. It is not often recognized in the schools here in the US because it is not as widely heard of as autism or cerebral palsy or another better known diagnosis. ACC has such a broad range of how it may affect a person that there is no known prognosis for what to expect when someone is diagnosed. Some people with ACC have only mild learning disabilities and others are severely mentally and physically challenged with others being somewhere in between the two. Some people with ACC have seizures. In fact, anyone who has ACC is at a higher risk to develop seizures because when you have ACC (a missing corpus callosum) you have a brain anomaly and there is a risk for seizures when a brain anomaly is involved. That does not mean that every person with ACC will have a seizure but it is something that a doctor should have told you. ACC can also be seen with other medical conditions such as midline defects, chromosome anomalies, genetic syndromes and metabolic disorders. ACC can affect the optic nerve and cause other eye conditions. ACC can cause hearing impairment. Some people who have ACC may have growth related problems and should be seen by a pediatric endocrinologist to be sure that all of their hormones are normal. Some kids with ACC need to be on growth hormones. You are also not alone in that your daughter is a "hyperactive child" and some parents who have a child with ACC also have a diagnosis of ADHD. I am SO sorry that you are not receiving support where you live within the school or from your doctor. I am also very sorry that your child's doctor(s) are not taking seriously the diagnosis of ACC and researching it better in an effort to help their patient and provide complete and accurate information to you as well. Please feel free to e-mail me anytime. Sandie *Mom to 15 year old Matthew with complete ACC in Oregon USA* she only has about 2 weeks left b4 the summer holidays so im hoping next term will be better the special needs co-ordinator is going to put a statement in to the education people to try and get her more help but said only about 3% of children get this .. her consultant is a doctor as far as i am aware he deals with all children with special needs in our area and even has a clinnic at the special school once a week that i wanted to get her into ill be monitoring the bullying and if it carrys on next term ill be making a official complaint but i was reading back thru letters and i found one that one doctor wrote to our own general doctor that said this Agenesis Of The Corpus Callosum is a Non-specific finding and doesnt really narrow down a diagnosis i have met the family and from a diagnosic point of view do not need to see the family again but when i asked if it was complete or partial ACC he told me it was complete so can someone tell me if ACC is an actual diagnosis becuse it seems they are either looking for other things as well or he doesnt think that ACC is a problem but reading websites it is so its a little confusing for us and yeah with us living in england we dont seem to be getting much support to me i dont think they know what they are doing i get angry sometimes coz i cant get the right help or speak to the right people that know about ACC and feel no one listens
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Post by matthewsmom on Jul 2, 2009 17:20:34 GMT -5
Hi msp123, It sounds like you have already been through a lot with only recently finding out that your daughter has ACC and needing to stand up and convince the consultant that an MRI should be done so that you could find out this information. Kids can just be so cruel in school even when you're a typically developing child. I am so sorry that your daughter is being bullied and treated so badly at school. It isn't right and it's not fair. I would definitely want to address that issue even if it meant going to the top of the school board or removing her from that particular school if they failed to take your concern/complaint seriously and address it. I am not familiar with how things work in England with respect to the school situation and special education classrooms or schools. I don't know if you have rules and regulations that govern the education process and special education process that must be followed like we do here in the US. I know that as moms we want to rush in and make everything better and protect our kids. I could not stand the thought of my own child with ACC being bullied or having to endure what your daughter is going through. I can understand your feelings about wanting to just remove her from the class she's in now and put her in special education but then you also said something in your post that makes me feel like mainstream school has it's upside as well (just maybe not THAT particular mainstream class/school she's in right now). You wrote that she is making progress with her writing and with her language. I don't think I would want to put a child in special education to work on life skills only if they are able to comprehend and make some progress in academics. Perhaps a blend of the two could be a workable solution that may benefit your child. I think that only you, as her mom, can make the right decision for her because you know her so well and know what she needs and will benefit from. In the US if a child is put in a life skills special education classroom (where my own child was) there is also a downside in that they could remain isolated in that room all day and be with other children who more than likely will not model typical developing children skills and language. Usually the kids in these types of classrooms have profound delays and many don't even have any verbal language. There is also the possiblity of having kids in these kinds of classrooms who have behavior issues and challenges. Often times these kinds of classrooms have a small number of kids (usually under 10 kids) with several aides to help the teacher and all the kids are working on their own individual goals. I had it written into my child's plan that he would mainstream for 50% of his day in appropriate activities because I did NOT want him isolated in that kind of environment or atmosphere that a special education life skills classroom has. I would definitely want to have a meeting to address your concerns with your daughter's school and then be prepared to stand up and be a strong advocate for her rights and her needs because you are the one who truly knows what is best for your child. The school can tell you all they want what THEY feel is best and should be done but hopefully in England the school does not have the final say. It's difficult, like I said, because I am not familiar with England's rules when it comes to special education or mainstream schooling. There must be other options for your daughter besides the school where she now attends. Ask the school to give you all the other options available for your daughter's education (both mainstream and special education) and then be sure to go and visit the classrooms. I always went and spent time observing a classroom before I ever agreed to put my child, Matthew, in any classroom. And then I went back and re-visited often and continued to make sure that it was still an appropriate environment for my child. I would also suggest that you go back often to the classroom and be sure that it is meeting her needs. Definitely stay involved. I am unsure if the consultant you mentioned is a medical doctor or a school board consultant? I would either get another "consultant" and/or see either that particular consultant or another consultant more often than every six months. If your child's medical doctor is not interested in learning or understanding about ACC then maybe it's time to find another doctor who either is aware of ACC or will become better educated regarding ACC in an effort to better help his patient. Another thing that can be very helpful is to have a child who has ACC have a Neuropsychological Evaluation to help determine the best possible teaching methods according to their strengths and skills. Here in the US you can request to have this evaluation through the school or you can find someone outside of the school to perform a Neuropsychological Eval. It would also be very beneficial to educate the doctor and school about ACC. You could take in some of the various documents and information explaining ACC and make them fully aware of the struggles and challenges that can occur when someone has ACC. There is an excellent book called ACC & Me that is available and it could help explain to your child's class and teacher what ACC is. It is written about a 10 year old boy who has ACC. You can obtain a copy of the book when you register through the National Organization for Disorders of the Corpus Callosum (NODCC) or through the ACC Network. I will list several links to information about ACC that may be helpful for you and also the link for how to obtain a copy of the ACC & Me book. I can send you a document that was written by a teacher who taught a child with ACC in his classroom. It has a lot of helpful information that could be good to give to your daughter's teachers as an insight and glimpse into the world of ACC and teaching kids who have ACC written from a teacher's perspective. If you would like to receive a copy of this by e-mail please send me an e-mail request or send me a PM with your e-mail and I will be happy to send it your way. If you would like help putting together information to give to your child's school and teachers about ACC please let me know and I would be happy to help put together documentation for you. I definitely recommend the ACC & Me book because it will give great insight from a child's perspective and is written on an easy to understand children's level. My heart goes out to you and your daughter. I know that you and she both will get through this and move forward to a place that is positive and a place that will allow her to receive an education within a peaceful and welcoming environment that will nurture and respect her uniqueness so that she is able to learn to her greatest potential. Sandie *Mom to 15 year old Matthew with complete ACC in Oregon USA* Educational Suggestions: www.nodcc.org/pdfs/Conference_Handouts/educational_suggestions_for_children_with_acc.pdfACC & Me Book: agenesiscorpuscallosum.blogspot.com/search/label/ACC%20and%20Me%20BookNODCC: www.nodcc.org/index.phpThe ACC Network: www.umaine.edu/edhd/research/acc/CORPAL (support group in the UK) www.corpal.org.uk/ACC & Challenges: agenesiscorpuscallosum.blogspot.com/2009/06/acc-challenges.htmlACC & Teaching Resources: agenesiscorpuscallosum.blogspot.com/2009/06/teaching-resources.htmlACC-Angels Around The World: scenicbeauty.tripod.com/AngelsAroundTheWorld.html
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Post by matthewsmom on Jul 1, 2009 18:21:20 GMT -5
I'm not an adult with ACC but I am the mom of a 15 year old boy who was diagnosed with ACC when he was four months old. For the adults who went through school NOT knowing they had ACC or partial ACC...do you wish you had known and been diagnosed with it sooner? Do you think it would have been helpful for you to know why you struggled with learning and other things? Thank you very much to any of you who may choose to answer this question. Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
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Post by matthewsmom on Jun 28, 2009 20:47:11 GMT -5
lauras, I am also the mom of a child who has ACC. My son is 15 years old. Like your own daughter...my son, Matthew, was also in special education from the beginning of his schooling with mainstreaming for 50% of his day. Of course, as he got older it became more difficult to include him in mainstream as much as he was in his early grade school years. My heart goes out to you with your expression of heartbreak regarding your daughter's difficulties and challenges with socializing. You are definitely not alone in those feelings. So many kids who have ACC struggle with social skills and have great challenges when it comes to being able to make a friend, know how to approach other kids their own age, keep a friend and with being able to express themselves. It also becomes more difficult for a child with ACC socially as they get older. Often times kids with ACC get along better with either younger kids or adults. So many parents look for ways to help their kids who have ACC learn social skills and while some find help within the schools with social skills lunchtime groups...it seems that many parents find it difficult to find the help that their child needs to be able to learn HOW to socialize. One of the research studies done on high functioning people with isolated ACC showed that they also struggle with social skills. It's so hard to know as a parent what to do for our kids who have such great challenges and it hurts to watch them not be able to fit in easily with their peers and struggle to make a friend. I don't think that anyone can actually tell you what to do for your own child because you are the one who knows your daughter so very well. You will just know in your heart what is best for her. It seems to me that if a child is struggling socially and does not have the proper tools and skills to approach children their own age and interact that there would be a lack of self confidence and self-esteem if they continued to try and continued to be made fun of or weren't received warmly by those kids. It would definitely be a big blow to anyone's self confidence and even I would want to shy away from being around other people if I continually struggled with what to say or knew what I wanted to say and couldn't easily express my thoughts and if I tried my best and someone laughed or wasn't helpful and friendly in return. I don't think I would want to make my child who was uncomfortable and lacked the skills join in with a group without my child being at least somewhat comfortable with the idea. I don't know how well your daughter is able to express herself with you but I'm sure that you have tried to get her to talk with you more about why she doesn't want to go to the church social group. I am wondering if maybe there is someone in the family who is around her age or a little older who could possibly go with her to help her interact and be a support for her so that she could feel comfortable in knowing she had someone with her, a friend, someone she trusted. Perhaps that may help her to feel a bit more open to the idea of going to the church social event. I am not sure if you are aware of the ACC-Listserv. There are many parents who belong to that e-mail support group who also share your own feelings and who have children who struggle socially who also have ACC. It's just a thought and I don't say that to take you away from this type of forum at all. It's just always nice to know what is available and how to access the many different types of support, I think. I am so sorry that you were in tears and crying during the day and through your post over the situation. I will definitely keep you and your daughter in my thoughts and my prayers. Please feel free to e-mail me anytime. Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
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