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Post by matthewsmom on Jan 26, 2010 18:44:55 GMT -5
Marvelous Music A Musical Pathway To Learning For Kids Who Have Agenesis of the Corpus Callosumagenesiscorpuscallosum.blogspot.com/2010/01/marvelous-music.htmlThis Article was written (with input from many parents who have a child with ACC) about the effects of music and learning on kids who have ACC. If you would like to include your own input, you still can by going to the link above and posting your comment at the end of the Article. If you want a hard copy of the article "Marvelous Music" to give to your child's teacher(s) or for yourself, please e-mail me at: hope@aracnet.com and I will be happy to send it you through e-mail. Sandie *Mom to 16 year old Matthew with complete ACC*
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Post by matthewsmom on Dec 6, 2009 18:40:12 GMT -5
HAPPY BIRTHDAY, LYNNEA!!I hope that you have a super, fun-filled birthday and spend it with the people that you love. Enjoy your very special day. Sandie
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Post by matthewsmom on Oct 9, 2009 17:22:36 GMT -5
Lynnea,
Thanks for sharing the band "This Is Energy" and their music. I am listening now to some of their songs and I like "Just Breathe". How great that they are supporting ACCAA and will be doing a video in support of ACCAA and people around the world who have ACC or a corpus callosum disorder.
Sandie *Mom to 16 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 24, 2009 23:36:34 GMT -5
Araceli... Just reading what you shared about seeing the little girl in the hot pink wheelchair being put on a special ed bus and how the mom watched as the bus and her girl drove out of sight brings back my own letting go memories as my own child, Matthew, was ready to enter school for the first time. It is extremely difficult to let your special needs child go to school and it goes beyond the tears that you shed when your child (who isn't special needs) is beginning school. I didn't put Matthew in school (pre-school) when he was 3, 4 or 5 but I did take him to Early Intervention classes once a week. I stayed with him though and some other parents also stayed with their kids. I didn't start Matthew in school until he was kindergarten age which was 6 for Matthew because his birthday is in October. One thing I will say is don't ignore any red flags, intuitions or gut feelings that you have when it comes to school. They are there for a reason and you should act on anything that doesn't feel right. I had the gut feeling immediately when I put Matthew in ESD kindergarten for the first time. I went home and cried and felt terrible like I needed to go get him right now and get him out of the classroom. It wasn't just the tears of letting him go off to school. It was more. It took me a couple days and within the first week of putting him in school I removed him. I made the choice to homeschool Matthew for his kindergarten year and I enrolled him in a private Christian pre-school two days a week and stayed as his aide. Unfortunately, I have learned that each year is different and transitions to different teachers, schools, classrooms are also not easy. I truly look at it like this. When you have a child with special needs who, in addition to educational needs, also has medical needs, may not talk or walk, etc...you must feel good about who is being responsible for all of your child's needs and be comfortable knowing that your child is safe with that person/teacher/staff. That requires asking lots of questions, voicing all your concerns, meeting the teacher and staff, visiting the classroom, staying the first day or more if you need to and voicing all of your concerns. Treat it exactly like how you would treat choosing who will watch your child while you are at work. I just read a great blog post from a mom (Vanessa) who has a boy (Ben) with special needs who happens to be a new member on this message board. You can read what she wrote by clicking on the link which will take you to her blog: especiallyben.blogspot.com/2009/09/basic-instincts.htmlVanessa's main blog is called eSpeciallyBen and can be found below: especiallyben.blogspot.com/Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
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Post by matthewsmom on Sept 24, 2009 16:35:03 GMT -5
Erin... Thank you for sharing such great news about Logan and his recent hearing/behavior testing. Receiving answers helps so much and allows us to make better and more informed decisions with respect to what our child needs. I can attest to the time consuming process of being a strong advocate for your child and I agree with you that it is worth every bit of time and work you put into it when you reap the rewards that happen as a result of that time and effort spent. Great news for you and Logan. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 24, 2009 16:24:08 GMT -5
Another ACC Media Story & Skilled Companion DogI just became aware today of another story in the media about a boy who has ACC and he is also on the autism spectrum. This boy happens to live near Matthew and me but I had no knowledge of this fact until I read his story and saw a familiar small town name that popped out at me in a local online paper. The story is also about a skilled companion dog and the relationship that the boy has with his new friend and dog, Walker. www.sherwoodgazette.com/features/story.php?story_id=125382603909218300Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
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Post by matthewsmom on Sept 21, 2009 18:34:55 GMT -5
Araceli... Wow! Nothing like a spur of the moment phone call that turns your family life routine topsy turvy. Brianna is in my prayers. I pray that the sleep study tonight will go very well, that God's hand will be in the entire process and that she will not have any worsening apnea. I hope that everything will work out well for you with your own work plans. I look forward to hearing your update. Sandie P.S. Brianna's pictures are adorable. She always has a big, beautiful smile on her face.
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Post by matthewsmom on Sept 18, 2009 19:06:19 GMT -5
Erin (ehart), You're welcome. There is definitely a big plus in networking with other parents who have a child with ACC and gaining their insight. I hope that Logan will receive all the therapies that will benefit him and that you will be able to better understand exactly what is causing Logan the difficulty with hearing/processing. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 14, 2009 20:58:34 GMT -5
ehart... Welcome to the Message Board. My son, Matthew, has had two Auditory Brainstem Response (ABR) tests. They were both done when he was a baby/toddler to rule out hearing loss. I was told by Matthew's audiologist that he needs extra time to process during a hearing test in the soundproof booth. I don't have specific experience with what your child, Logan, is dealing with in terms of possible processing delays but I can tell you that in another ACC e-mail group that I belong to there are parents who have discussed this topic. I also went into the ACC-Listserv archives and read several posts from parents regarding auditory processing delays and specific hearing tests, behavior tests., etc. One parent did mention that her child who has ACC was diagnosed with central auditory processing disorder. If you are interested, you can send a note to the ACC Listserv yourself or I would be happy to copy the note you posted here and send it (on your behalf-with your permission) to the ACC Listserv e-mail group and then send you all responses received from other parents who have gone through what you are dealing with now. ACC-Listserv e-mail support group: lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1 Sandie *Mom to 15 year old Matthew with complete ACC in Oregon*
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Post by matthewsmom on Sept 14, 2009 20:38:35 GMT -5
April... I know how hard it is and how much it hurts when people come up to you and ask you all kinds of questions about your baby/child or when you see those stares and looks from other people. I'm so happy for you that you are able to look at it from a different perspective and see it as a way of helping to spread awareness about ACC. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 11, 2009 19:40:53 GMT -5
Araceli... That is such a cute story!! How cute that Hailey says "ACCC" and she liked the book and is able to understand enough of it on her level to relate it to her own sister. What a blessing that book (ACC & Me) is. Glad you're having such a fun Mommy bonding time with your girls. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 7, 2009 22:55:10 GMT -5
Lauras, I remember that post you wrote about your daughter, Bethany and talking with the Pastor about her attending a church event. I'm so glad that she made the choice to go ahead and go and so happy for BOTH OF YOU on the huge accomplishments!! I'm sure it wasn't easy letting her go off and be away all by herself for the first time. She'll have so many things to tell you when she arrives back home and share all about her experience with you. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 6, 2009 17:44:47 GMT -5
When I began homeschooling Matthew a few years ago we started working on sign language because all of a sudden he showed an interest in learning it even though our much earlier attempts to learn sign language didn't amount to much. He has learned to sign about 25+ words and we also work on teaching him to use those sign language words appropriately and with meaning. Well, when we were at the beach on a family trip we took Matthew to ride the Carousel that was inside a shopping area just a few blocks from the beach. He loves riding the Carousel and we did this over and over many times each day while we were there. I had the idea (before we went) that I wanted to have Matthew's picture drawn by an Artist who worked in the shopping mall. This is something we haven't ever done and I was really excited to have an Artist draw a portrait of Matthew. Come to find out when we set up the appointment, the Artist's shop was only a few feet within direct vision of the Carousel. It was a 30 minute sitting and there was no door...just an open view straight to the flashing lights, the music, the horses going round and round and Matthew's favorite thing right before his eyes. Needless to say, the sitting consisted of the Artist trying to get Matthew's attention to look at him and Mom and Dad trying to take Matthew's attention off the Carousel and block his vision from the brightly colored horsies that were calling Matthew's name...lol It was a constant battle during the entire 30 minutes and somewhere near the end of the sitting Matthew signed a word and I instantly knew what he signed. The Artist asked me what Matthew said and I uhhhmmm....told him (a little embarassed) that he just said "different" and he wants to do something different. Different is a new word that Matthew recently learned to sign and now I am convinced beyond a doubt that he knows exactly what DIFFERENT means and he used it appropriately!! lol He wanted to do something DIFFERENT and go ride those horses on the Carousel!! lol I'm really proud of him. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Sept 4, 2009 20:24:47 GMT -5
Lynnea,
You're welcome. You do so much to reach out to others and give of yourself....always willing to share information about yourself and ACC, always willing to help educate and bring a greater awareness to Agenesis of the Corpus Callosum. This message board is just one of the ways you are helping other people and it is very apparent that God is working through you. *hug*
Sandie
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Post by matthewsmom on Aug 31, 2009 11:25:10 GMT -5
ACC IN THE MEDIA!!A future with no guarantees Written by Erin Taylor, Minor Staff Writer Monday, August 31, 2009 The parents of Steven (the little boy in the news article) are in the ACC-Listserv e-mail support group. I wanted to share this article in the Kingman Daily Miner with all of you. It is exciting to see the media taking an interest in Agenesis of the Corpus Callosum!! www.kingmandailyminer.com/main.asp?SectionID=1&subsectionID=1&articleID=33294 Sandie *Mom to 15 year old Matthew with complete ACC*
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