Try out this program, I think you'll love it!
http://www.cozi.com/
It is a family calendaring program. I just tried it and I think I am REALLY going to love it!
Friday, September 28, 2007
Wednesday, September 26, 2007
Prioritizing Emotions
Evan, my Aspie was so excited because I got some Signing Time videos for the boys and they came in the mail today. He immediately grabbed the ABC's volume and ran to watch it. The TV upstairs is in a bedroom that we use as a den. Right outside the door are... (TRUMPET FANFARE) the stairs. I HATE THIS! It has been a constant worry that the kids or myself will fall down the stairs sleep walking (yeah, my kids have night terrors) or rough housing, not paying attention, etc. Today was the day. Evan was running in and out of that room watching the video and then finding me to show me the sign he just learned. My 18 month old, Robby, had terrible timing and was between the door and the stairs as Evan ran out. Nothing but the grace of God saved Robby from being seriously hurt. He stopped himself on the third stair down and has no severe injuries. He cried for a little while, then he was fine.
Here's my issue. Just as I was running to save Robby (I heard them vocalize as they ran into each other and assumed the worst, so I ran out to save Robby from falling down the stairs), Evan came joyously bounding out to show me another sign. I didn't raise my voice. I just said, "Evan, Robby is hurt. You knocked him down the stairs." Evan replied, "This is how you make a 'Z' mom!" He was jumping and so excited. Recently, Evan has made real strides in noticing when he has hurt someone and saying, "I'm sorry." But today, no matter what I said, and even after I raised my voice so he could hear me over his jubilant, repetitive talking, he seemed like he just couldn't make feeling sorry a priority over his excitement. And I could tell he was really thinking about it! Even after a lot of progress in one area, he can't regulate his emotions and "prioritize" which emotion is more important at that time. I would say he has now "learned" what social cues tell you that you have hurt someone. I would say that he has "learned" that the appropriate response is, "I'm sorry." He has even gotten really good at jazzing that part up! Today, it just wouldn't come. He was far too excited about the new videos. How do you teach someone to prioritize what they feel? It seems so internal, so instinctual. Of course, I never thought he'd make a friend on his own or learn to recognize when he hurt someone, and he has done those things. It is just a struggle I hadn't thought about...
Here's my issue. Just as I was running to save Robby (I heard them vocalize as they ran into each other and assumed the worst, so I ran out to save Robby from falling down the stairs), Evan came joyously bounding out to show me another sign. I didn't raise my voice. I just said, "Evan, Robby is hurt. You knocked him down the stairs." Evan replied, "This is how you make a 'Z' mom!" He was jumping and so excited. Recently, Evan has made real strides in noticing when he has hurt someone and saying, "I'm sorry." But today, no matter what I said, and even after I raised my voice so he could hear me over his jubilant, repetitive talking, he seemed like he just couldn't make feeling sorry a priority over his excitement. And I could tell he was really thinking about it! Even after a lot of progress in one area, he can't regulate his emotions and "prioritize" which emotion is more important at that time. I would say he has now "learned" what social cues tell you that you have hurt someone. I would say that he has "learned" that the appropriate response is, "I'm sorry." He has even gotten really good at jazzing that part up! Today, it just wouldn't come. He was far too excited about the new videos. How do you teach someone to prioritize what they feel? It seems so internal, so instinctual. Of course, I never thought he'd make a friend on his own or learn to recognize when he hurt someone, and he has done those things. It is just a struggle I hadn't thought about...
Wednesday, September 19, 2007
Group Discussion!
I would LOVE for this blog to become a forum for discussion between moms. I started it with the ambition of having it be a place for SuperMoms of Exceptional Kids to come and leave comments on my works (like my book). I had also hoped that you would read my posts and share yout own stories and successes with everyone else! So, if you read a post that touches a nerve, makes you cry, or gets you thinking.... LET US KNOW! Click on the "post a comment" link at the bottom of my post and comment away! I have now set it up to show all the comments when you open one specific post. That way, you can see what other moms have to say as well as add your thoughts. I would love this to become a place for moms (and all parents) to come when they find out they are having/ have a child with exceptions and be immersed with support, information, and help from not only myself, but all of you!
Excerpt from Chapter Six
*****CHAPTER NUMBER SIX- RULE NUMBER FOUR******
Seek Those Who Have Gone on Before
It’s dark and you are alone. You walk forward, knowing you can’t go back and you can’t stop. You reach the edge of an over-grown forest. You are afraid but there is something pushing you to go on, to complete what you have started. You cautiously move into the brush. You are afraid and you don’t know which way to go or what to do. By chance, you bump into a middle aged woman. She smiles and says, “First time here, huh?” You nod and wonder who this woman is. She seems to have a sense of where she is going. She can tell that you are contemplating her. She smiles again. “Yeah, I’ve been through here before. In fact, I live here. If you want, I can show to a clearing where there is good light and berries we can pick for dinner.” You wonder why she doesn’t offer to show you the way out, but finding no better alternative, you nod and follow her to the clearing. In the middle of the clearing there is a fire and several women gathered around it. You can hear people stumbling about in the dark forest and you can see women sitting off away from the group, cold and sad. You decide that the best option is to gather around the fire and enjoy the company of the other women. As the night goes on, the women start to share with you their experiences in the forest. Some are happy and seem to point to the way out of the forest. Some are sad and you can tell that they were setbacks for the women. It is now that you realize you are not leaving the forest. This forest will be your home forever. You wonder why some of the women are still wandering in the forest, going it alone, when there is warmth and friendship so near by. You wonder what makes some of the women stay in the shadows, unwilling to join the group even though they know it exists. It is here that your learning of life in the forest starts and here that you begin to learn how to flourish in this new environment that was thrust on you.
You will find that your foray into the complicated, confusing and often emotional life in the world of exceptional kids will be frightening. You will feel like you are in the dark. There is no way that you can magically know how to parent a child with exceptions. However, there are those that have gone on before you that have learned from trial and error, research, services offered, and those who went on before them. It really is a beautiful system.
There will be many things that prevent you from seeking help and advice from others. Pride is Public Offender Number ONE! Do not allow your pride to get in the way of your learning. We all instinctively seem to know what is best for out kids. But, if I asked you to make a decision critical to the success of a mission to the moon, something tells me you would rely on more than instinct. There is a beautiful blend of Mommy Gut and education that makes a SuperMom to exceptional kids. Never be too proud to seek help from others.
Access to information may be a barrier to some moms. There are so many different resources in our society these days. You have early intervention services in every state that are required by law to help you and your exceptional child once an evaluation demonstrates need. There is the internet that has countless forums, support groups and boards where you can meet and chat with other parents that are facing the same or similar challenges that you are. At two different times in my life I have used different online parent groups to gather information and find support. How useful are the experiences of others who have been where you are now! And the simple beauty of the system is that at some point, you will become that wizened one, sharing tips and advice to those who are just starting out. The system perpetuates its self.
Shyness and other personality traits may prevent you from seeking help and information from others. May I present the idea that anyone of us would walk through fire for our kids. Sometimes small and simple things seem harder than a grandiose gesture. But it is often in the small and simple things that we effect the greatest change! Start with baby steps and work up to the face to face meetings or other things that may seem more intimidating!
Seek Those Who Have Gone on Before
It’s dark and you are alone. You walk forward, knowing you can’t go back and you can’t stop. You reach the edge of an over-grown forest. You are afraid but there is something pushing you to go on, to complete what you have started. You cautiously move into the brush. You are afraid and you don’t know which way to go or what to do. By chance, you bump into a middle aged woman. She smiles and says, “First time here, huh?” You nod and wonder who this woman is. She seems to have a sense of where she is going. She can tell that you are contemplating her. She smiles again. “Yeah, I’ve been through here before. In fact, I live here. If you want, I can show to a clearing where there is good light and berries we can pick for dinner.” You wonder why she doesn’t offer to show you the way out, but finding no better alternative, you nod and follow her to the clearing. In the middle of the clearing there is a fire and several women gathered around it. You can hear people stumbling about in the dark forest and you can see women sitting off away from the group, cold and sad. You decide that the best option is to gather around the fire and enjoy the company of the other women. As the night goes on, the women start to share with you their experiences in the forest. Some are happy and seem to point to the way out of the forest. Some are sad and you can tell that they were setbacks for the women. It is now that you realize you are not leaving the forest. This forest will be your home forever. You wonder why some of the women are still wandering in the forest, going it alone, when there is warmth and friendship so near by. You wonder what makes some of the women stay in the shadows, unwilling to join the group even though they know it exists. It is here that your learning of life in the forest starts and here that you begin to learn how to flourish in this new environment that was thrust on you.
You will find that your foray into the complicated, confusing and often emotional life in the world of exceptional kids will be frightening. You will feel like you are in the dark. There is no way that you can magically know how to parent a child with exceptions. However, there are those that have gone on before you that have learned from trial and error, research, services offered, and those who went on before them. It really is a beautiful system.
There will be many things that prevent you from seeking help and advice from others. Pride is Public Offender Number ONE! Do not allow your pride to get in the way of your learning. We all instinctively seem to know what is best for out kids. But, if I asked you to make a decision critical to the success of a mission to the moon, something tells me you would rely on more than instinct. There is a beautiful blend of Mommy Gut and education that makes a SuperMom to exceptional kids. Never be too proud to seek help from others.
Access to information may be a barrier to some moms. There are so many different resources in our society these days. You have early intervention services in every state that are required by law to help you and your exceptional child once an evaluation demonstrates need. There is the internet that has countless forums, support groups and boards where you can meet and chat with other parents that are facing the same or similar challenges that you are. At two different times in my life I have used different online parent groups to gather information and find support. How useful are the experiences of others who have been where you are now! And the simple beauty of the system is that at some point, you will become that wizened one, sharing tips and advice to those who are just starting out. The system perpetuates its self.
Shyness and other personality traits may prevent you from seeking help and information from others. May I present the idea that anyone of us would walk through fire for our kids. Sometimes small and simple things seem harder than a grandiose gesture. But it is often in the small and simple things that we effect the greatest change! Start with baby steps and work up to the face to face meetings or other things that may seem more intimidating!
Saturday, September 8, 2007
Karin Dent- My New Best Friend
Ah, happiness. I got a call two Wednesdays ago in the afternoon (shortly after my last post!)from our genetic counselor, Karin Dent. She starts by telling me how sorry she is and saying that she had to call back as soon as she got my message because of everything that had happened leading up to this call. We talked about Drew and how fitting the diagnosis of VCFS was. I told her we had been researching it and we felt it fit him perfectly. Then, she took down all my concerns- all the things we saw in Drew that fit the syndrome. She told me she would get me an appointment from the scheduling lady (who had already gone home) and I should be getting a call back. The next day, I get a call from Carol, yes, blacklisted Carol, how cheerfully tells me that they have an appointment for Drew on Spetember 18th. There now, Carol, WAS THAT SO HARD! A little while later, I am in contact with the plastic surgeon's nurse. By the end of the business day, I have an appointment for Drew with a hematologist on the 12th of Spetember. So, what has this taught me? Being the Dreaded, Horribly Obnoxious Mom really pays off! In all seriousness, I have learned that NO ONE will fight for your child like you will and YOU WILL HAVE TO FIGHT! But, it is worth being the scourge of the medical world if my son gets the treatment he deserves.
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