I have met so many mothers with the same story to tell. I feel very fortunate to have this forum in which to voice my story and some of those I feel important to share. It's no accident that I have met some wonderful mothers along the way and they have taught me more than I can say. My hope has always been that I would be able to reach just ONE person. I felt that my mission would be accomplished if even one person was helped by my struggles. However, I have exceeded my expectations and I have reached dozens of mothers who are struggling and have no other place to go. In the process I have also learned so much and recently I had one of those "light bulb" moments. The following story could be YOUR story. Nonetheless it is a true story.
We take it for granted that we live in the United States of America. It's truly a land of freedom and hope. As long as we work hard and try our best, we can expect great things. I recently spoke with a mother who is from a foreign country where children with disabilities are tolerated, at best. She explained that they don't offer services in the schools and basically treat them like any other child. If they don't get it... they just don't get it. There is no "special" treatment at all! Parents are often embarrassed and have no other place to turn to for help. It's a fact of life that she doesn't want to even consider for herself. Right now she is here where things are going great, and she can potentially receive any and all services her child needs. However, that could all change in a blink of an eye. It's too much for her to bear. It's truly too much for ME to even think about.
No matter how much we may complain about the quality of services or the amount of services offered in our area, at least we have the opportunity to receive some help for our children. We have invaluable resources at our fingertips. Many services are free of charge and it doesn't take a lot of effort to receive them, in most instances. For the most part, our society does not shun others with disabilities. I see young men and women with disabilities working in various capacities and living independent lives. There is also HOPE in our country for parents. That is such a big deal. Without hope there would not be advances in treatments and services. Parents would just give up and probably resort to putting their children in asylums or possibly abandoning them at an orphanage doorstep. That is a reality in some countries.
As we celebrate the holidays, let us all give thanks for the blessings we have in the U.S. Let us not forget the people who have given up their lives for the freedoms and rights we have today. Let us not forget the miles we have traveled and the miles we have yet to travel. Let us not forget the past... lest we repeat it. As we begin the year 2010, I pray that we keep the spirit of Christmas in our hearts and that we try to always think of others before ourselves. I have learned that small things truly make a difference in others' lives. It doesn't have to be miraculous things. Sometimes people just need someone who will listen. We don't always have all the answers. It's amazing how much power a hug or a smile can have. Begin the new year with a positive attitude and you will see amazing things happen in your life.
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God bless you and yours.
Merry Christmas and Happy New Year!
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Saturday, December 26, 2009
Wednesday, December 2, 2009
New Year's Resolution Suggestion
I have a suggestion for a "New Year's Resolution" for all you moms out there. I want you to have an open mind about this and really try to do it. My suggestion is that you try to complete ONE project that you have always wanted to do. For example, I have always wanted to get my music that I have composed over the years onto paper. I sometimes worry that I will either forget it or else lose my muse as the years go on. It's sort of like a legacy of sorts that I want to leave behind. I figure it might be something that my grandkids can play and know that their grandmother enjoyed playing.
Everyone has dreams and goals that they want to accomplish. I urge you to figure out what YOUR dream is and go for it in 2010! Sometimes we spend so much time worrying and caring for our children that we forget about our OWN dreams. I think it's the best gift you could give yourself and your kids.
************
Just do it!!
************
Everyone has dreams and goals that they want to accomplish. I urge you to figure out what YOUR dream is and go for it in 2010! Sometimes we spend so much time worrying and caring for our children that we forget about our OWN dreams. I think it's the best gift you could give yourself and your kids.
************
Just do it!!
************
Monday, November 23, 2009
Holiday Survival Tips
With the holidays coming up I thought it would be beneficial to discuss how to survive the holidays. We're not just talking about the gifts either. I think the holidays are wonderful, but they also bring many factors that are often difficult to deal with. For example, diet is often changed. A lot of sugar is consumed compared to other times and sometimes the basics of nutrition are ignored.
Let's begin with dealing with off-days. Try to maintain some kind of routine, whatever that may be. It's also important that you don't forget to feed your children. Remember that they often have a snack before lunch at school and we might not even think about that. My daughter actually has snack AFTER lunch. She is accustomed to eating when she gets home from school. If you notice your children acting a little "hyper" or irritable then it might mean that they are hungry.
Next, I want to talk about gifts. Maybe it's because I have four children, but I think that it's important that children understand the reason for the season. They don't need a hundred presents to feel loved. As a matter of fact, I know some families that tell their children that Santa only has room for one present for each child and then the rest are from the parents. That makes it a lot easier to explain when they don't have the funds to get them what they want. In MY family, we don't do "wish lists". I just talk to my children and I KNOW what they want. As a matter of fact, there are things out there that they don't even KNOW about.
The last thing is spending time with your family. Sometimes spending time with extended family can be overwhelming for everyone.... but especially the children. Try to be mindful of things that may not seem such a big deal to you, but that could make things stressful. For example, talk to your children about rules at other people's homes. Explain the importance of using their manners and remembering their please and thank you's. You may want your children to bring a special toy or something to do in case there is not much to do where they are going. That usually works for us. If you have to travel a long distance, try bringing blankets and pillows. Those things seem to help relax the kids and comes in handy when they fall asleep in the car on the way home.
The holidays don't have to be stressful. Just remember the reason for the season and try not to get caught up the marketing of the holidays. There is no reason to max out credit cards and over-extend yourself in time as well. The most valuable gift you can give yourself and others is the gift of peace and joy. That is something that money can't buy.
**********************************
Jesus is the reason for the Season.
**********************************
Let's begin with dealing with off-days. Try to maintain some kind of routine, whatever that may be. It's also important that you don't forget to feed your children. Remember that they often have a snack before lunch at school and we might not even think about that. My daughter actually has snack AFTER lunch. She is accustomed to eating when she gets home from school. If you notice your children acting a little "hyper" or irritable then it might mean that they are hungry.
Next, I want to talk about gifts. Maybe it's because I have four children, but I think that it's important that children understand the reason for the season. They don't need a hundred presents to feel loved. As a matter of fact, I know some families that tell their children that Santa only has room for one present for each child and then the rest are from the parents. That makes it a lot easier to explain when they don't have the funds to get them what they want. In MY family, we don't do "wish lists". I just talk to my children and I KNOW what they want. As a matter of fact, there are things out there that they don't even KNOW about.
The last thing is spending time with your family. Sometimes spending time with extended family can be overwhelming for everyone.... but especially the children. Try to be mindful of things that may not seem such a big deal to you, but that could make things stressful. For example, talk to your children about rules at other people's homes. Explain the importance of using their manners and remembering their please and thank you's. You may want your children to bring a special toy or something to do in case there is not much to do where they are going. That usually works for us. If you have to travel a long distance, try bringing blankets and pillows. Those things seem to help relax the kids and comes in handy when they fall asleep in the car on the way home.
The holidays don't have to be stressful. Just remember the reason for the season and try not to get caught up the marketing of the holidays. There is no reason to max out credit cards and over-extend yourself in time as well. The most valuable gift you can give yourself and others is the gift of peace and joy. That is something that money can't buy.
**********************************
Jesus is the reason for the Season.
**********************************
Wednesday, November 11, 2009
It's So Much Work to be Your Friend
"It's So Much Work to be Your Friend" is the latest video I have watched by Rick Lavoie. I had the opportunity to watch it at the last PA meeting at our children's school. It was enlightening and informative and everything in between. I wanted to share some of the things that I learned and hopefully can help many of you with your own children.
Communication is basically the key to social interaction. There are numerous things that we take for granted such as body language, cultural differences, personal space, among other things. Rick explained how deficits in any or all of these areas can have a huge impact on the type of adult your child will grow up to be. Friends are not a luxury... they are a necessity. That is why it is crucial to make sure that our children learn how to make friends, and more importantly how to keep them.
He talked about so many things that my head is about to explode right now. However, I will try and discuss a few of the things that might be pertinent to many of you reading this... since, I feel it's pertinent to me. One of the things he talked about was the fact that children don't have the same opportunities to make friends like we did. They don't have as much "free time" at school and then they get home and have homework. By the time they can play they end up on the computer or watching t.v. He pointed out how "play dates" are the thing now and that the majority of the time the kids will end up playing video games and not say a single word to one another. He suggested making the first play date in a neutral territory such as a playground. He also suggested that it never be three kids since ultimately YOUR child will be the one left out.
Lavoie gave a rather interesting statistic. He said that communication is 93% NONVERBAL! I was surprised to hear this, but it makes sense once you think about it. Facial expressions, hand gestures, body language, just to name a few are some of the things that say more than words. Some kids have a difficult time understanding the nonverbal cues that people make. This is critical in understanding why sometimes kids with learning disabilities have social problems and difficulty making friends. For example, Lavoie told a story about a time when he had some REALLY good news to tell his wife and he looked all over the school for her (she worked with him). When he finally found her, she was in the dining hall talking to another teacher. He said that the first thing he noticed was the somber look on their faces and right away he knew something was wrong. Instead of telling his wife the good news, he decided to approach them cautiously and ask what was wrong. He found out that the other teacher had just gotten the news that someone close to her had passed away. He told us this story and then asked, "how many of YOUR kids would have just gone up to us and told us the good news without even realizing that it was inappropriate?" I looked at my husband and nodded because that described our #2 very well.
Personal space is another issue. He demonstrated how we Americans have a need for our space. Some of the examples he gave were rather humorous, but true. For example, he mentioned how in a restaurant our table is OUR table. If anyone else tried to sit there or put something on our table then we would definitely not like it. Another example is sitting on a plane. The tray is ours and if someone was to put their drink on it then that would be invading our space. The last example is the most common thing that people mention.... the elevator. We avoid eye contact and NEVER touch another person if we can help it. It all depends on the situation, but there is a social understanding that we will behave in certain ways under certain conditions. What is appropriate in one situation would be totally inappropriate in another. How do you teach this to a child? He said to take every opportunity to talk to your children and to teach them. We take it for granted that we have decades of experience. We can pass that on to our children.
Social contracts are also very complex. For example, if a man is walking down a street and a lady is approaching him then he might nod or say hello but he will keep his distance. If he were to approach her and touch her that would be totally inappropriate. I see children with autism or other learning disabilities who will hug strangers out of the blue. They might stare without realizing it. These things could be misinterpreted. Lavoie also gave an example of a child who went to a vending machine and couldn't make up his mind. He stood there for several minutes when all of a sudden a lady came up behind him and waited. She waited for almost five minutes and then left in a huff. The "social contract" in this situation would have been to let the lady go ahead while he made up his mind, but he totally did not get it. Parents can teach their kids by example, but more importantly, we should verbally discuss these things as well. We need to take advantage of every opportunity and not take it for granted that our children will "just get it" because they might not.
Voice dynamics is yet one of the more complex things for some children to grasp. Lavoie gave examples of how just a simple increase in volume of a word in a sentence can change the meaning. I see this with my OWN child who sometimes will sound rather disrespectful without even realizing it. I have to remind him all the time. He doesn't understand that his tone and volume affect the meaning of his words. At times I feel like he's a parrot and will mimic what he hears. He will sometimes repeat what I say. I have to remind myself that I can take these situations and transform them into a learning experience. He's still so young and I have so much I need to teach him.
The last thing I wanted to share was story he closed with. He said that in all his years teaching at his school for children with special needs, the number one issue that was top priority for parents and students alike was not academics and getting into a prestigious college. It was the basic need of friendship. He asked a group of teenagers if they had the choice between doing excellent in academics or not ever having any problems socially for the rest of their school years, what would they choose? Inevitably they all chose the latter. We cannot underestimate the power of friendship for a child. It will mold, shape, and guide them to be the adults they will become.
If you have the opportunity to see ANY of Lavoie's videos I encourage you to do so. He always puts everything in perspective and gives parents simple tools that can accomplish so much!
**************************
This is the link if you'd like to purchase the video. I feel blessed to have a school that will offer these videos to the parents so that we don't have to purchase them.
http://www.shoppbs.org/product/index.jsp?productId=2082686
**************************
Communication is basically the key to social interaction. There are numerous things that we take for granted such as body language, cultural differences, personal space, among other things. Rick explained how deficits in any or all of these areas can have a huge impact on the type of adult your child will grow up to be. Friends are not a luxury... they are a necessity. That is why it is crucial to make sure that our children learn how to make friends, and more importantly how to keep them.
He talked about so many things that my head is about to explode right now. However, I will try and discuss a few of the things that might be pertinent to many of you reading this... since, I feel it's pertinent to me. One of the things he talked about was the fact that children don't have the same opportunities to make friends like we did. They don't have as much "free time" at school and then they get home and have homework. By the time they can play they end up on the computer or watching t.v. He pointed out how "play dates" are the thing now and that the majority of the time the kids will end up playing video games and not say a single word to one another. He suggested making the first play date in a neutral territory such as a playground. He also suggested that it never be three kids since ultimately YOUR child will be the one left out.
Lavoie gave a rather interesting statistic. He said that communication is 93% NONVERBAL! I was surprised to hear this, but it makes sense once you think about it. Facial expressions, hand gestures, body language, just to name a few are some of the things that say more than words. Some kids have a difficult time understanding the nonverbal cues that people make. This is critical in understanding why sometimes kids with learning disabilities have social problems and difficulty making friends. For example, Lavoie told a story about a time when he had some REALLY good news to tell his wife and he looked all over the school for her (she worked with him). When he finally found her, she was in the dining hall talking to another teacher. He said that the first thing he noticed was the somber look on their faces and right away he knew something was wrong. Instead of telling his wife the good news, he decided to approach them cautiously and ask what was wrong. He found out that the other teacher had just gotten the news that someone close to her had passed away. He told us this story and then asked, "how many of YOUR kids would have just gone up to us and told us the good news without even realizing that it was inappropriate?" I looked at my husband and nodded because that described our #2 very well.
Personal space is another issue. He demonstrated how we Americans have a need for our space. Some of the examples he gave were rather humorous, but true. For example, he mentioned how in a restaurant our table is OUR table. If anyone else tried to sit there or put something on our table then we would definitely not like it. Another example is sitting on a plane. The tray is ours and if someone was to put their drink on it then that would be invading our space. The last example is the most common thing that people mention.... the elevator. We avoid eye contact and NEVER touch another person if we can help it. It all depends on the situation, but there is a social understanding that we will behave in certain ways under certain conditions. What is appropriate in one situation would be totally inappropriate in another. How do you teach this to a child? He said to take every opportunity to talk to your children and to teach them. We take it for granted that we have decades of experience. We can pass that on to our children.
Social contracts are also very complex. For example, if a man is walking down a street and a lady is approaching him then he might nod or say hello but he will keep his distance. If he were to approach her and touch her that would be totally inappropriate. I see children with autism or other learning disabilities who will hug strangers out of the blue. They might stare without realizing it. These things could be misinterpreted. Lavoie also gave an example of a child who went to a vending machine and couldn't make up his mind. He stood there for several minutes when all of a sudden a lady came up behind him and waited. She waited for almost five minutes and then left in a huff. The "social contract" in this situation would have been to let the lady go ahead while he made up his mind, but he totally did not get it. Parents can teach their kids by example, but more importantly, we should verbally discuss these things as well. We need to take advantage of every opportunity and not take it for granted that our children will "just get it" because they might not.
Voice dynamics is yet one of the more complex things for some children to grasp. Lavoie gave examples of how just a simple increase in volume of a word in a sentence can change the meaning. I see this with my OWN child who sometimes will sound rather disrespectful without even realizing it. I have to remind him all the time. He doesn't understand that his tone and volume affect the meaning of his words. At times I feel like he's a parrot and will mimic what he hears. He will sometimes repeat what I say. I have to remind myself that I can take these situations and transform them into a learning experience. He's still so young and I have so much I need to teach him.
The last thing I wanted to share was story he closed with. He said that in all his years teaching at his school for children with special needs, the number one issue that was top priority for parents and students alike was not academics and getting into a prestigious college. It was the basic need of friendship. He asked a group of teenagers if they had the choice between doing excellent in academics or not ever having any problems socially for the rest of their school years, what would they choose? Inevitably they all chose the latter. We cannot underestimate the power of friendship for a child. It will mold, shape, and guide them to be the adults they will become.
If you have the opportunity to see ANY of Lavoie's videos I encourage you to do so. He always puts everything in perspective and gives parents simple tools that can accomplish so much!
**************************
This is the link if you'd like to purchase the video. I feel blessed to have a school that will offer these videos to the parents so that we don't have to purchase them.
http://www.shoppbs.org/product/index.jsp?productId=2082686
**************************
Monday, November 2, 2009
Reality Check Time
**The following information may not be appropriate for young readers. I apologize if some of the content seems offensive, but this is information that might save your child's life.**
I just wanted to share with those of you who can relate how important it is to remember that there is always light at the end of the tunnel. No matter how dark things may get or how hectic your life may seem to be it is always a matter of time before things eventually get better. However, it is so important to never let your guard down. That is the main reason for this post.
No matter how safe you think your neighborhood is or how wonderful your neighbors might seem, it is a fact that the majority of crimes against children are done by someone they KNOW! Does this mean you have to be paranoid? Absolutely not. Does this mean you need to be vigilant? You BETTER be!!! Unfortunately, we live in a time when you can't just assume that other families or friends have the same standards you do. I lived in a cul de sac in my previous home and thought I knew all my neighbors very well. It was a shock to me when one morning we saw the police at our neighbor's house and the parents were yelling and screaming at one another. I found out later that they did drugs. I actually let me children participate in an Easter Egg hunt at their house just a few months prior to that incident! My point is that you just never know.
There are numerous things you can do to help your children. First, you need to teach them about personal space and what is appropriate touch.... and more importantly, what is inappropriate touch. If there is a "Stranger Danger" or other similar course then I would encourage you to enroll your child at least for a short period of time. It is never too early to learn those vital skills. I know what you are probably thinking right now, "I won't let my child out of my sight before they are school aged." I hate to even say this, but your child can be "groomed" before your eyes and you wouldn't even know it. "Grooming" refers to the process by which a sex predator will touch a child and basically get them used to his touch. This process also includes testing the child to see how he might react. I know this is difficult to hear, but I feel it's critical for all of you to understand.
The second way you can help your child is by keeping open lines of communication. This will become even MORE critical as they get older. My parents taught me this concept very well. I felt like I could talk to them about ANYTHING! I have tried to continue that with my own children. An important point I want to make right now is that it is important for you to initiate conversation with your child. You might need to ask point blank if something inappropriate has happened... especially if those "mommy" instincts kick in and you know something is not quite right. It might not be a bad idea to periodically have family night lessons about this concept. You can have scenarios and act them out to show what to do in certain situations. The important thing is to not make it scary. You definitely don't want your child to be afraid. You DO want them to be cautious and to be mindful of things that they need to tell you. ALWAYS... and I mean ALWAYS stress the fact that they will NEVER EVER get in trouble for telling you. Many times the adult predator might say that they will get in trouble if they tell.
The last thing I want to talk about is what do you do when your child comes to you with something as awful as what we have talked about. Your first instinct will be to kill or strangle the offender. First, congratulate and say how proud you are that they came to you. Make sure they know that it wasn't their fault. Next, get as much information as you can. You might want to get a doll and tell your child to show you exactly what happened. It will be difficult, but you need as much specific detail about what happened since you don't want to have any question that it was an inappropriate act. Most children will not make things like that up. In special needs children the predator will often count on the fact that perhaps the parents or other adults will not take the accusations seriously. That makes those children more vulnerable.
All you have to do is turn on the nightly news and it won't be long before you hear about a child being abducted or about a pervert who has done horrible things. The reality is that the parents of these kids never thought it could happen to them. I have personal experience about how you can never be too careful. A young military man with children of his own may seem like the last person you would suspect of being a pedophile, but I knew such a person. He went to church every Sunday and had children at his house every day. Don't be fooled by appearances. Trust your instincts. A little prayer doesn't hurt either.
**************
http://www.missingkids.com/missingkids/servlet/PublicHomeServlet?LanguageCountry=en_US
For more information check out this website.
**************
I just wanted to share with those of you who can relate how important it is to remember that there is always light at the end of the tunnel. No matter how dark things may get or how hectic your life may seem to be it is always a matter of time before things eventually get better. However, it is so important to never let your guard down. That is the main reason for this post.
No matter how safe you think your neighborhood is or how wonderful your neighbors might seem, it is a fact that the majority of crimes against children are done by someone they KNOW! Does this mean you have to be paranoid? Absolutely not. Does this mean you need to be vigilant? You BETTER be!!! Unfortunately, we live in a time when you can't just assume that other families or friends have the same standards you do. I lived in a cul de sac in my previous home and thought I knew all my neighbors very well. It was a shock to me when one morning we saw the police at our neighbor's house and the parents were yelling and screaming at one another. I found out later that they did drugs. I actually let me children participate in an Easter Egg hunt at their house just a few months prior to that incident! My point is that you just never know.
There are numerous things you can do to help your children. First, you need to teach them about personal space and what is appropriate touch.... and more importantly, what is inappropriate touch. If there is a "Stranger Danger" or other similar course then I would encourage you to enroll your child at least for a short period of time. It is never too early to learn those vital skills. I know what you are probably thinking right now, "I won't let my child out of my sight before they are school aged." I hate to even say this, but your child can be "groomed" before your eyes and you wouldn't even know it. "Grooming" refers to the process by which a sex predator will touch a child and basically get them used to his touch. This process also includes testing the child to see how he might react. I know this is difficult to hear, but I feel it's critical for all of you to understand.
The second way you can help your child is by keeping open lines of communication. This will become even MORE critical as they get older. My parents taught me this concept very well. I felt like I could talk to them about ANYTHING! I have tried to continue that with my own children. An important point I want to make right now is that it is important for you to initiate conversation with your child. You might need to ask point blank if something inappropriate has happened... especially if those "mommy" instincts kick in and you know something is not quite right. It might not be a bad idea to periodically have family night lessons about this concept. You can have scenarios and act them out to show what to do in certain situations. The important thing is to not make it scary. You definitely don't want your child to be afraid. You DO want them to be cautious and to be mindful of things that they need to tell you. ALWAYS... and I mean ALWAYS stress the fact that they will NEVER EVER get in trouble for telling you. Many times the adult predator might say that they will get in trouble if they tell.
The last thing I want to talk about is what do you do when your child comes to you with something as awful as what we have talked about. Your first instinct will be to kill or strangle the offender. First, congratulate and say how proud you are that they came to you. Make sure they know that it wasn't their fault. Next, get as much information as you can. You might want to get a doll and tell your child to show you exactly what happened. It will be difficult, but you need as much specific detail about what happened since you don't want to have any question that it was an inappropriate act. Most children will not make things like that up. In special needs children the predator will often count on the fact that perhaps the parents or other adults will not take the accusations seriously. That makes those children more vulnerable.
All you have to do is turn on the nightly news and it won't be long before you hear about a child being abducted or about a pervert who has done horrible things. The reality is that the parents of these kids never thought it could happen to them. I have personal experience about how you can never be too careful. A young military man with children of his own may seem like the last person you would suspect of being a pedophile, but I knew such a person. He went to church every Sunday and had children at his house every day. Don't be fooled by appearances. Trust your instincts. A little prayer doesn't hurt either.
**************
http://www.missingkids.com/missingkids/servlet/PublicHomeServlet?LanguageCountry=en_US
For more information check out this website.
**************
Monday, October 26, 2009
Medical Insurance Nightmare Update
I have some exciting news for all of you who have been following my medical insurance dilemma. For those of you who are not familiar with it... this is a short synopsis:
In April 2008 my entire family got tested for the ATP7B gene since my daughter had been recently diagnosed with Wilson's Disease in February 2008. This is a very rare genetic test and so I had no idea what to expect. The results were good...we were all carriers and did not have the defect. However, my nightmare began when I received the bill for each of the six members of my family. The bills were in the thousands for each test. I just knew that there was a billing error. Since we couldn't afford to pay the bills and then have reimbursement our bills went to collections. The lab blamed the insurance company and the insurance company kept blaming the lab. I spent countless hours on the phone with each trying to solve the mix-up. However, it seemed to get worse with time. I was just about to give up when one day I was taking a shower and thought to myself, "why don't I just call the lab and find out how much the test is supposed to cost?" I did just that! To make a looooong story short, I was able to find out that indeed the testing was not supposed to be as much as they billed me and the lady was able to take our bills out of collections. I spent another three months calling up the insurance company and the billing office at the lab to make sure that our bills were not placed in collections once again.
The update is as follows: our bills came in today and our balance is (drum roll please......) ZERO!!!! I am so glad that I never gave up. I knew that the time I spent on the phone with the representatives would pay off. In the meantime, I got a Case Manager for my daughter and I will write more about that later. This person will basically be my advocate if anything like this happens in the future. The way things are looking right now with the health care mess.... I will definitely need an advocate.
***************************************
Let us pray that the government does
not make things worse than they already
are.
***************************************
In April 2008 my entire family got tested for the ATP7B gene since my daughter had been recently diagnosed with Wilson's Disease in February 2008. This is a very rare genetic test and so I had no idea what to expect. The results were good...we were all carriers and did not have the defect. However, my nightmare began when I received the bill for each of the six members of my family. The bills were in the thousands for each test. I just knew that there was a billing error. Since we couldn't afford to pay the bills and then have reimbursement our bills went to collections. The lab blamed the insurance company and the insurance company kept blaming the lab. I spent countless hours on the phone with each trying to solve the mix-up. However, it seemed to get worse with time. I was just about to give up when one day I was taking a shower and thought to myself, "why don't I just call the lab and find out how much the test is supposed to cost?" I did just that! To make a looooong story short, I was able to find out that indeed the testing was not supposed to be as much as they billed me and the lady was able to take our bills out of collections. I spent another three months calling up the insurance company and the billing office at the lab to make sure that our bills were not placed in collections once again.
The update is as follows: our bills came in today and our balance is (drum roll please......) ZERO!!!! I am so glad that I never gave up. I knew that the time I spent on the phone with the representatives would pay off. In the meantime, I got a Case Manager for my daughter and I will write more about that later. This person will basically be my advocate if anything like this happens in the future. The way things are looking right now with the health care mess.... I will definitely need an advocate.
***************************************
Let us pray that the government does
not make things worse than they already
are.
***************************************
Sunday, October 25, 2009
Autism Checklist and Warning Signs
There isn't a formal checklist for autism. In fact, there are many things that physicians will actually disagree about. For example, many parents will say that their children have digestive issues or issues with food and doctors will often dismiss those symptoms.
I would like to refer you all to my 8/10/09 post: "When Should I Worry?" In that post I talk about the warning signs and go into detail about them. I think it's important to have a good screening tool. Hopefully that will help a lot of you. Of course, this is not a exact science. I always tell mothers to go with their gut... that is usually the best screening tool we have.
I have compiled a checklist using information I have learned from experience as well as professionals I have dealt with in the past thirteen years. The main thing to remember is that this is mainly a screening tool and should not be confused with a diagnostic tool. The only person who can definitively tell you if your child has autism or is in the spectrum is a clinical psychologist or psychiatrist combined with neurological evaluation and behavioral specialist. We are basically talking about a team of doctors.
First Signs of Trouble:
1) The child is not progressing at the same rate as other children in any of the following areas: speech, motor skills, socially, or emotionally.
2) You notice odd behavior such as repetitive motions or sounds.
3) There is no or little eye contact.
4) Walking is unusual. For example, he might walk on tiptoes or have an unusual gait.
5) The child has an unusual sleep pattern.
6) The child is sensitive to sounds, textures, and is easily overstimulated.
Those are all things that are early warning signs. If your child also has ADD or ADHD then there are other things I could add to the list. For the sake of not being confusing, I thought it would be easier to focus on autism. Unfortunately, many children with autism or in the spectrum will also have ADD or ADHD.
Progressive Warning Signs:
1)There is a regression in speech, social skills, or emotional health. A regression might also mean that they do not progress beyond a certain level but still retain what they have learned. That is still considered "regression."
2)At this point the child has had to learn how to cope so they might cover their ears to shield themselves against auditory stimulation. This is textbook for many kids with autism.
3)Stimming is more apparent. This means you might see a child humming or making other sounds. I found this list in a very informative website: http://www.autism-in-the-christian-home.com/stimming.html
"This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.
Visual – staring at lights, blinking, gazing at fingers, lining up objects
Auditory – tapping fingers, snapping fingers, grunting, humming
Smell – smelling objects, sniffing people
Taste – licking objects, placing objects in mouth
Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking
Vestibular – rocking, spinning, jumping, pacing
Proprioception – teeth grinding, pacing, jumping"
This is the most misunderstood of all the symptoms and is the most difficult to control. Stimming is the child's way of dealing with certain situations. It might mean the child is happy or it might mean that the child is frustrated or sad.
4)Language patterns are irregular. The child might sound like a "little professor" and/or sort of robotic in language without the usual inflection that most kids have. This is one of the most interesting of all the signs. It's not necessarily the content of what they say, but the way they say it.
5)You will notice that they don't make friends easily or else they consider everyone their friend. They don't understand social cues and therefore it's difficult for them to engage in a typical activity or conversation and make those bonds that kids usually make. A parent will try their hardest to put the child in situations where there are kids, but the child will remain by himself or else avoid being around the group as a whole. This is often difficult for the parent since they don't want their child to be alone, but it's often what the child wants and sometimes needs.
I want to stress that there is a BROAD spectrum for autism. There are some kids that will appear to get better with age.... while others will get progressively worse. The spectrum includes Asperger's, PDD(Pervasive Developmental Disorder), and some are looking at the ADD/ADHD link as well. However, just because your child is diagnosed with autism doesn't mean that's the end. Early intervention is the key. The future is not written in stone. The diagnosis will help to understand the child and help with the symptoms.
********************************************
I would encourage everyone to visit:
www.autismspeaks.org
It is full of valuable information and
lots of checklists and warning signs to look
for in all ages of children.
********************************************
I would like to refer you all to my 8/10/09 post: "When Should I Worry?" In that post I talk about the warning signs and go into detail about them. I think it's important to have a good screening tool. Hopefully that will help a lot of you. Of course, this is not a exact science. I always tell mothers to go with their gut... that is usually the best screening tool we have.
I have compiled a checklist using information I have learned from experience as well as professionals I have dealt with in the past thirteen years. The main thing to remember is that this is mainly a screening tool and should not be confused with a diagnostic tool. The only person who can definitively tell you if your child has autism or is in the spectrum is a clinical psychologist or psychiatrist combined with neurological evaluation and behavioral specialist. We are basically talking about a team of doctors.
First Signs of Trouble:
1) The child is not progressing at the same rate as other children in any of the following areas: speech, motor skills, socially, or emotionally.
2) You notice odd behavior such as repetitive motions or sounds.
3) There is no or little eye contact.
4) Walking is unusual. For example, he might walk on tiptoes or have an unusual gait.
5) The child has an unusual sleep pattern.
6) The child is sensitive to sounds, textures, and is easily overstimulated.
Those are all things that are early warning signs. If your child also has ADD or ADHD then there are other things I could add to the list. For the sake of not being confusing, I thought it would be easier to focus on autism. Unfortunately, many children with autism or in the spectrum will also have ADD or ADHD.
Progressive Warning Signs:
1)There is a regression in speech, social skills, or emotional health. A regression might also mean that they do not progress beyond a certain level but still retain what they have learned. That is still considered "regression."
2)At this point the child has had to learn how to cope so they might cover their ears to shield themselves against auditory stimulation. This is textbook for many kids with autism.
3)Stimming is more apparent. This means you might see a child humming or making other sounds. I found this list in a very informative website: http://www.autism-in-the-christian-home.com/stimming.html
"This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.
Visual – staring at lights, blinking, gazing at fingers, lining up objects
Auditory – tapping fingers, snapping fingers, grunting, humming
Smell – smelling objects, sniffing people
Taste – licking objects, placing objects in mouth
Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking
Vestibular – rocking, spinning, jumping, pacing
Proprioception – teeth grinding, pacing, jumping"
This is the most misunderstood of all the symptoms and is the most difficult to control. Stimming is the child's way of dealing with certain situations. It might mean the child is happy or it might mean that the child is frustrated or sad.
4)Language patterns are irregular. The child might sound like a "little professor" and/or sort of robotic in language without the usual inflection that most kids have. This is one of the most interesting of all the signs. It's not necessarily the content of what they say, but the way they say it.
5)You will notice that they don't make friends easily or else they consider everyone their friend. They don't understand social cues and therefore it's difficult for them to engage in a typical activity or conversation and make those bonds that kids usually make. A parent will try their hardest to put the child in situations where there are kids, but the child will remain by himself or else avoid being around the group as a whole. This is often difficult for the parent since they don't want their child to be alone, but it's often what the child wants and sometimes needs.
I want to stress that there is a BROAD spectrum for autism. There are some kids that will appear to get better with age.... while others will get progressively worse. The spectrum includes Asperger's, PDD(Pervasive Developmental Disorder), and some are looking at the ADD/ADHD link as well. However, just because your child is diagnosed with autism doesn't mean that's the end. Early intervention is the key. The future is not written in stone. The diagnosis will help to understand the child and help with the symptoms.
********************************************
I would encourage everyone to visit:
www.autismspeaks.org
It is full of valuable information and
lots of checklists and warning signs to look
for in all ages of children.
********************************************
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