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Post by matthewsmom on Aug 11, 2009 17:50:34 GMT -5
Araceli, You're very welcome. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 11, 2009 17:46:43 GMT -5
Lynnea, *seconds Araceli's love of this Board* I thank you from the bottom of my heart for creating this Message Board, for providing a place of support and for helping to create greater awareness of Agenesis of the Corpus Callosum and corpus callosum disorders. Thank you. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 11, 2009 17:34:33 GMT -5
What a beautiful, heartfelt and touching way to introduce your little cutie pie, Brianna. Thank you for all of the pictures you have shared with me (during the time that you and I have known each other and e-mailed) of both of your precious little girls. Brianna and Hailey are adorable. I hope that Brianna has a super fun time when she celebrates her upcoming two year old birthday next month with her family. HAPPY BIRTHDAY, BRIANNA!!! One day...when you least expect it...Brianna will call you "Mommy" with her voice and with a twinkle in her eye... and your eyes will be full of joyful tears. Love, Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 11, 2009 12:55:02 GMT -5
Just thought I'd let everyone know that while typing a recent post I noticed that after I posted it on the Message Board and began reading it I saw that a couple of my words were completely changed.
Then I figured out it is because there is an anti-swear feature here. However, the two words it changed on me are NOT swear words:
bumembled (a s s embled)
pbum (pa s s)
The word that is the obvious swear word within those two words above was picked up and instantly changed to bum.
I had to make adjustments to allow the word to be typed correctly so that people reading it will be able to make sense of the words.
Just wanted to make others aware of this in the event that you find it happening with your own posts.
Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 11, 2009 12:36:06 GMT -5
And they call some of these people "retarded" A few years ago, at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. Then they all turned around and went back........ every one of them. One girl with Down's Syndrome bent down and kissed him and said, " This will make it better." Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for several minutes. People who were there are still telling the story. Why? Because deep down we know this one thing: What matters in this life is more than winning for ourselves. What matters in this life is helping others win, even if it means slowing down and changing our course. If you pass this on, we may be able to change our hearts as well as someone else's............... "A candle loses nothing by lighting another candle"
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Post by matthewsmom on Aug 11, 2009 12:32:03 GMT -5
acmunchkin,
What a wonderful post you shared and I love the thought of bringing to mind that there are so many more positive and powerful ways to describe a person.
Like your son, Kyle, my own son, Matthew, also used a Kaye walker when he was younger and he began wearing orthotics shortly after a year old. In the back of my mind I also worried about Matthew being called that dreaded word. Luckily, it has not happened to my knowledge.
Araceli,
You're welcome.
I will post an inspirational story I found that addresses this very subject in a new thread.
Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 10, 2009 22:03:48 GMT -5
A child is........ A butterfly in the wind, Some can fly higher than others; but each one flies the best it can. Why compare one against the other? Each one is different! Each one is special! Each one is beautiful! Author unknown
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Post by matthewsmom on Aug 10, 2009 21:57:39 GMT -5
Please use this thread to post any inspirational poems or stories that have a special place in your heart.
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Post by matthewsmom on Aug 9, 2009 19:13:49 GMT -5
Hi April...a.k.a. (acmunchkin)... Welcome to the Message Board. I currently take my own son, who has complete ACC, to Music Therapy and I have taken him to music therapy in the past as well. I find (for my son) music to be a key to unlock the doorway to learning and for helping him learn how to express himself. This has proven to be true for my son since he was very little. So…Yes, I do notice a huge difference. However, my son is non-verbal with only a handful of words. Many parents comment that their child with ACC has a much higher receptive language (ability to understand what they hear) than their expressive language. His main form of communication is through an augmentative communication device (DynaVox V) and through sign language. But, I continue to work with Matthew on verbal language as well. It has been my experience that music therapy is different for each child (no matter what their diagnosis is) and you will set individual goals to help them learn (through music) what it is you hope that music and songs will help to accomplish. Of course, when a child has ACC there is no guarantee that Music Therapy will produce language but there is also no harm in trying, I believe. Personally, I am a huge fan of music and music therapy for helping my own child learn. Since he was a baby I have sung little silly made-up rhyming songs to help him learn body parts and other things. For whatever reason, music captures Matthew’s attention and helps him relate the song to a body part or something else we are working on learning much more easily than spoken words. Each person diagnosed with agenesis of the corpus callosum is so different in terms of HOW they are affected as I am sure you already know. Some kids with ACC talk, some kids do not talk. Some kids struggle to get their words out in a complete sentence or in the right order. Some kids struggle for the right words. To my knowledge there is no specific research done yet on the effects of music therapy on people who have ACC. With the diagnosis of ACC comes what so many parents refer to as the “wait and see” period as I am sure you know about. Waiting to see what my child would be able to do or not do was NOT easy and was something I struggled with for quite awhile. But our kids amaze us ALL THE TIME with the things they learn and it's so wonderful!! I would definitely try music therapy with your child to see if music might possibly be the way to help unlock and encourage verbal skills. I am a believer in giving a child with ACC several avenues and tools for helping to encourage language such as Sign Language and augmentative communication devices as well as continuing to work on verbal language. I still sing songs today with Matthew to help him learn something new that we are working on and I think it’s amazing how quickly he is able to learn through a song. I began homeschooling my son two years ago and I found a wonderful website called Listen and Learn. It is written by Rachel Rambach, a Board-Certified Music Therapist. Rachel is experienced working with children who have disabilities and specifically with kids who have Autism. She offers free full length songs on her website to sing with your child. I have found the website to be a big blessing and can’t say enough good things about her, her website and what she does to reach out and help so many kids around the world. You may want to take a look at the website and see if any of the songs there may help your son, Kyle. www.listenlearnmusic.com/If you click on the link above and scroll half way down the page you will see “labels” on the left-hand side. The songs are categorized into labels and if you click on a topic all of the songs under that specific topic will appear for you to listen to. If you have any questions about our music therapy sessions I would be happy to share more about our own experience. Feel free to e-mail me also. hope@aracnet.com If you decide to take Kyle to music therapy I would love to hear how he liked and responded to it and what you think about the sessions if you may wish to share. Sandie Mom to 15 year old Matthew with complete ACC
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Post by matthewsmom on Aug 9, 2009 16:23:37 GMT -5
Please use this thread to post any prayer requests you may have...and know that there are others here who will be praying for you. And be sure to post an update when you receive an answer to prayer. It's always wonderful to see the amazing ways in which God works.
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Post by matthewsmom on Aug 7, 2009 16:40:54 GMT -5
Araceli,
I am SO sorry that your discussion at work with your co-worker (who is also your cousin) turned in to such a hurtful talk.
Being the mom of a child with complete ACC who is also very delayed developmentally, I can relate to how it feels when someone so easily uses such a descriptive label like the “R” word.
I am glad that you were able to express to your cousin how it makes you feel when you hear that word and at the same time I am sorry that your cousin wasn’t able to understand your pain and dislike of the word. It does surprise me a little bit that she did use the word during your conversation even if she didn’t mean it disrespectfully. I think that some people are just better able to show empathy towards others while others just are not. Now maybe if your cousin was a mom herself to a child who was mentally delayed she may see it in a new light and be less apt to use the “R” word. It’s hard to tell for sure.
One thing is for sure though…I think that this world is full of many people who use the “R” word without the blink of an eye…and there are others who have a heart of gold and enough empathy to go around the world and back who are considerate of other people.
Some people are thoughtful of other people’s feelings. Some are not so thoughtful.
Sandie *Mom to 15 year old Matthew with complete ACC*
P.S. There was a discussion about this same thing in another group I belong to. I will ask the mom who posted it for permission to share it with you.
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Post by matthewsmom on Aug 7, 2009 16:15:36 GMT -5
Araceli, I'm so glad that you have made peace (and were able to come to a positive resolution) with the therapy walking goal for your daughter, Brianna. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 7, 2009 16:08:37 GMT -5
Araceli, I'm glad you find the sites helpful. Please definitely post any websites you find about ACC that are informative. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 6, 2009 13:33:57 GMT -5
Dakotah….Sarah, Thank you for all that you shared. Not being ready to be out there yet does NOT sound crazy…not at all. I understand perfectly and I also felt the same way as you. In fact, it took me several years after Matthew was diagnosed before I was even ready to talk/write with other parents who have a child with ACC. I was going to mention to you about Dr. Sherr. I’m glad that you are already aware of him and that you’ve sent your son’s MRI to Dr. Sherr. I can relate to what you wrote about not liking how long everything takes and not liking the waiting. Matthew saw a Genetic Doctor once and it was thought he had a particular genetic syndrome (Angelman Syndrome) so blood was drawn for very specific chromosome testing and those test results took four to six weeks to find out the outcome. It turned out he did not have the genetic syndrome that was suspected….but those weeks of waiting was way too long to wait and wonder. Just so you know, I have seen other parents on the Listserv also comment about the length of time it takes to hear back from Dr. Sherr’s office once they have sent their MRI but I know you will find out soon (just not soon enough when you're anxiously awaiting the outcome). All of the parents on the Listserv who have taken their child to actually see Dr. Sherr say wonderful and positive things about him. You definitely have support here on this message board anytime you would like it. Sandie *Mom to 15 year old Matthew with complete ACC*
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Post by matthewsmom on Aug 5, 2009 19:05:28 GMT -5
Hi Jessica...(luv2bholm), Welcome to the message board. You are not alone in wondering if you're doing enough for your child through therapies. I also went through that when my child was younger and, at times, even now question if I did enough when my son, Matthew, was younger with intervention and therapies. While it's wonderful that your child is making progress and doing very well I would listen to your gut feelings or your inner mommy voice that tells you when something needs attention or doesn't seem quite right. You will always ALWAYS know your child best and YOU are the one who is around your child 24/7. Being a strong advocate for your child is always in the best interests of your child. I don't know if you're in the US or if your son is receiving Early Intervention therapy services right now or some other type of therapy such as private clinic speech therapy? Something I did on a regular basis was to have my son get an overall evaluation/assessment by an outside clinic setting. We used a Children's Developmental and Rehabilitation clinic and in his early years he was evaluated on a yearly basis. He would be seen by a pediatric developmental pediatrician, a physical therapist, occupational therapist, speech therapist and any other medical professionals or therapists that were necessary. This type of testing showed where he was overall developmentally, what he needed to work on and therapies were suggested that would help benefit him. Those medical reports and assessments came in very handy at times when dealing with insurance and therapy services. I also gave copies of those assessments to the school when Matthew began school. Like hannahsmom (Leanne), I think music is a wonderful and effective tool to use. I take Matthew to music therapy and he LOVES music. I also sing songs to him to help him learn because things click easier for him if it's made into a little song. For the same reason why there is not yet a guideline for how to teach a child who has ACC there is also not yet specific tools or ways to help kids with ACC. Much of this stems from the very broad range of how ACC may affect a person diagnosed with it. Each person is different in terms of how they are affected and what they will require to help them. Some kids with ACC do have sensory processing issues. Some kids benefit from therapies that help address those issues. An assessment coupled with your own input and concerns would be something to think about, I think. When my own son was younger he also did better if pictures on pages were limited to one or two things. It was too much and too overwhelming if the page contained too many choices and pictures. This is something he has struggled with over the years but it did get better. Each child is so different though and will make their own progress on their own timeline. I don't really find it weird that your son would go and get an object that matched the picture card. I think it's great and very smart of him to do that. I remember when my son was younger and we were working on him learning to use a communication device, I was told by his therapist that objects are easier to learn and that the next step is to move on to pictures. Also, if your son just had the task verbally explained to him without the task being visually shown to him as well as verbally explained to him...I can see where your son may not understand what was being asked of him. I think it's GREAT that he did figure it out. Like your son, my own son is also very easy going. It took him several years before he made a little shift (even though he is still easy going) and began to assert himself rather than simply moving on to do something else. One common thing that comes up often with kids who have ACC is social challenges. So many kids who have ACC struggle with how to make a friend, what to say, how to interact with peers their own age and they often times take things VERY LITERALLY. They may not get a joke, or understand certain humor or wordplay. They can greatly benefit from a social group and someone who can guide and mentor them in learning how to play and interact socially with their peers. It has been mentioned many times that as a child with ACC gets older the social gap becomes more apparent in terms of them lagging behind their peers. I think working on social goals from an early age and continuing to work on social goals with a child who has ACC would be a huge benefit for them. I am a huge supporter of mainstreaming a child in school for the social aspect when a child has ACC. My son only had one integrated Early Intervention pre-school class where there were both typical kids and developmentally delayed kids in the same class. It was an absolutely perfect environment. When Matthew entered school I made that a top priority...to have him mainstreamed and to provide him with the social aspects of being around typically developing children who could model for him. Listen to your heart, trust your intuition and give yourself the credit that you deserve because it sounds like you are doing a wonderful job. Sandie *Mom to 15 year old Matthew with complete ACC*
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