A recent conversation with my mom prompted me to write this post. I can't explain it, but I feel like a ton of bricks have been lifted off my shoulders. It's because now I KNOW for a surety that she's on board. I think I can compare the experience like an awakening of sorts. It's rather amazing, actually.
There are certain things that people can't imagine. One thing is motherhood. There is no way to explain it.... you have to experience it. The same goes for autism. It's a whole different world. When you know someone who has autism the world is no longer the same and it also changes you. I know, personally, I have gained more patience and more understanding. I have also grown to LOVE children with disabilities. Although my child's condition is not as severe as Down Syndrome or other children with low functioning autism, I look at those children and I understand them. I think I even appreciate them. It's hard to explain. One reason might be that my religion teaches that children with such disabilities are such special spirits that they cannot sin and therefore don't need to be baptized. They come to earth to experience a mortal body and that is all they need to progress in the next life. I think that is such an awesome teaching of our church.
If you are a friend, a family member, or an acquaintance of someone who has a child with autism then you have a glimpse of what I am talking about. However, you don't really KNOW what it's like to live day to day. You don't see the tantrums, the meltdowns, the overstimulation, or frustration that comes with autism. My child is harder on himself than anyone I know. When I see others belittling him or not taking notice of his progress it really hurts. His behavior in public has improved dramatically, but it's because we work with him on a daily basis. He is in a special school where we sacrifice a very large tuition to make sure he gets the best help. We sacrifice going on family trips or getting expensive clothes, for example, in order to pay the expenses that come with autism. I am here to tell you that it's not just the tuition for the school, but it's also doctor bills that aren't covered by insurance, psychologist testing, speech therapy when he was younger, occupational therapy that we could not afford for very long, AND the medication!
What does it mean to be "on board" with someone who is struggling with a child who has autism? 1) Don't judge. 2) Learn as much about it as you can. 3)Be understanding and empathetic. 4)Remember that autism doesn't define who the child is, but rather explains the behavior. 5)Don't always assume that the child is at fault... sometimes they can't stand up for themselves. 6)Know that the parents and the child are harder on themselves than meets the eye. 7) Don't forget to praise once in a while when appropriate....it gets REALLY old just hearing negative comments.
I can't stress enough the fact that things aren't always what they seem. Case and point: I can remember one day when my #2 was horrible! I think I was near my breaking point. He had done almost everything you could think of. I had spanked him, grounded him. Nothing seemed to work. (This was before we had a diagnosis.) Well... the week gradually got better and we actually ended up having a decent week. So, I decided as positive reinforcement we would go to Stevie B's Pizza and have a family night. Our rule was the kids had to eat before they could go and play in the arcade. As soon as my #2 finished, he was eager to go into the arcade. We went in and there was a grandma with her perfect granddaughter playing. Of course, my #2 was so excited to play, but I had to get change. I went to the machine and the grandma was standing in line to get tokens. My #2 proceeded to stand by the machine as we waited our turn. However, he doesn't know personal space and he evidently got a little too close and it bothered the grandma. I could tell and so I told him to move and to stand by me. I then looked at the grandma and said, "He's just excited...he's only a kid." (I was hoping she would be understanding.) Her response was, "No.... YOU just need to be a parent!!" My jaw just hit the floor. I couldn't believe what she had said. There are many things I could have told her. However, I just ignored her and avoided her the rest of the time we were there. That is one of the best examples I can share with you to show you a glimpse of what people just don't know and how prejudging someone can really hurt. Little did she know that parenting is ALL I do 24/7 and that I have to pick my battles, and if I reprimanded my child for something he has no control over then I would not be doing my job as his mother.
************************************
I am the tank engine that provides
the momentum to pull the heavy loads,
but if the cars don't follow then I
might as well pull with all my might
til kingdom come 'cause they aren't
going to budge.
************************************
Wednesday, February 10, 2010
Monday, February 1, 2010
The Sibling Effect
So much focus is given to the children with problems that often the siblings are left feeling ignored, unloved, and needing attention. This often leads to the kids "acting out" or sometimes even mimicking the behavior in hopes that THEY too will get attention. Remember that negative attention is attention nonetheless. That is something that psychologists have drilled into my head over the years.
I am just as guilty as anyone else out there. I have ignored my daughter, for example, on numerous occasions since she rarely gives us trouble and she is almost the "perfect" child in every way. She does well in school, has lots of friends, and is a very loving and sweet child. My oldest used to give us so much trouble when he was younger, that NOW we often ignore him as well since he is thirteen and rarely gives us trouble as well.... especially compared to how it was when he was younger. That leaves only two others that demand a lot of my attention at the moment. I try very hard to give it to them, but it's hard sometimes to do it without doing it at the expense of others. I was thinking about that the other day and it prompted me to write this entry. I am going to call it the "Sibling Effect" and it definitely covers a lot more than it sounds.
The Sibling Effect is the way others treat or perceive your children without knowing them, but only knowing one or more siblings. It also refers to the way siblings are treated by parents. This can be positive or negative. For example, your oldest child has a teacher and the experience is negative. The sibling has the same teacher years later, but the negative reputation is already there in spite of the fact that they are two completely different individuals. They look the same and possibly have some of the same mannerisms and that just makes things more complicated. However, another way of looking at it is that the parent will often have certain expectations even though there are two completely different individuals involved. This also works in the opposite manner. If your oldest child is well-behaved and a good kid then people are going to assume that future children will be the same. The parent will often expect good behavior and then doesn't understand why the child is misbehaving or acting so differently. This leads to frustration and often misguided efforts to use the same kind of discipline,etc.. on the child.
It's an unfair thing, but it happens all the time. The problem especially arises when you have a child with special needs. It often isolates the siblings because children are so cruel. It's hard to change a child's reputation especially among other children. I have a dear friend whose child is in the autism spectrum and she can't allow him to go to a friend's house unsupervised. She has a younger daughter who is typical and often asks if she can go play at a friend's house. It's so hard for her since she has to constantly explain why rules differ for the children. Her son often gets angry and frustrated because he can't play with other children, while his younger sister is allowed. However, the worst part is that he is seldom asked to play by other children and so he will often invite himself. He has been shunned and teased by children in his neighborhood on numerous occasions. It's almost too much for the mother to bear.
I can only speak from experience, but after my son's diagnosis I almost held my breath with my next two children. It was almost like I expected the worst but hoped for the best. I said a lot of prayers and tried to remain optimistic. When my daughter had speech delay I almost felt like giving up! I didn't want to go through it all again.... it seemed so unfair. However, I am so glad that I didn't give up. I worked really hard with her and today she is doing great. My youngest has speech delay as well and I thought to myself, "here we go again..." However, THIS time I have the knowledge and experience I have acquired over the years and that gives me an advantage. I have to remind myself that he is an individual and there are NO limits to his potential.
I feel so protective of my children, but especially my second child. He has been diagnosed with PDD (Pervasive Developmental Disorder), Tourette's (also known as "ticks"), and ADHD. One can only imagine the complications in trying to get him enough social interaction. He's an awesome kid and very intelligent. However, he lacks a lot of social skills and other kids his age don't understand him. Actually, many ADULTS don't understand him. I am just so thankful for the school he attends because he has made so many friends and the parents and teachers adore him! One thing that I worry about is the fact that my youngest looks and acts SO much like him. I have seen the "Sibling Effect" on numerous occasions and don't really know what to do about it. I feel like the only thing I CAN do is just educate others. They need to know that he is not like his brother. At the moment his only challenge is he is speech delayed. Of course with that comes other issues, but he is progressing and doing so well. I see a lot of his sister in him. I am quite optimistic about his future. He is speaking better than any of his siblings at the same age. That in itself gives me a lot of hope.
My hope is that someone will read this post and either #1: think twice about prejudging a child based on knowledge of a sibling or #2: know that they aren't alone and that others are aware of the problem AND that something can be done about it. We don't need to sit back and ignore something like this. The way a child is treated will shape the kind of person he/she will become. It doesn't matter if the child is typical or special-needs.... it's all the same.
*************************************
The worst thing you can do to a child
is ignore him.... but worse yet is to
prejudge him and form opinions before
even getting to know him.
*************************************
I am just as guilty as anyone else out there. I have ignored my daughter, for example, on numerous occasions since she rarely gives us trouble and she is almost the "perfect" child in every way. She does well in school, has lots of friends, and is a very loving and sweet child. My oldest used to give us so much trouble when he was younger, that NOW we often ignore him as well since he is thirteen and rarely gives us trouble as well.... especially compared to how it was when he was younger. That leaves only two others that demand a lot of my attention at the moment. I try very hard to give it to them, but it's hard sometimes to do it without doing it at the expense of others. I was thinking about that the other day and it prompted me to write this entry. I am going to call it the "Sibling Effect" and it definitely covers a lot more than it sounds.
The Sibling Effect is the way others treat or perceive your children without knowing them, but only knowing one or more siblings. It also refers to the way siblings are treated by parents. This can be positive or negative. For example, your oldest child has a teacher and the experience is negative. The sibling has the same teacher years later, but the negative reputation is already there in spite of the fact that they are two completely different individuals. They look the same and possibly have some of the same mannerisms and that just makes things more complicated. However, another way of looking at it is that the parent will often have certain expectations even though there are two completely different individuals involved. This also works in the opposite manner. If your oldest child is well-behaved and a good kid then people are going to assume that future children will be the same. The parent will often expect good behavior and then doesn't understand why the child is misbehaving or acting so differently. This leads to frustration and often misguided efforts to use the same kind of discipline,etc.. on the child.
It's an unfair thing, but it happens all the time. The problem especially arises when you have a child with special needs. It often isolates the siblings because children are so cruel. It's hard to change a child's reputation especially among other children. I have a dear friend whose child is in the autism spectrum and she can't allow him to go to a friend's house unsupervised. She has a younger daughter who is typical and often asks if she can go play at a friend's house. It's so hard for her since she has to constantly explain why rules differ for the children. Her son often gets angry and frustrated because he can't play with other children, while his younger sister is allowed. However, the worst part is that he is seldom asked to play by other children and so he will often invite himself. He has been shunned and teased by children in his neighborhood on numerous occasions. It's almost too much for the mother to bear.
I can only speak from experience, but after my son's diagnosis I almost held my breath with my next two children. It was almost like I expected the worst but hoped for the best. I said a lot of prayers and tried to remain optimistic. When my daughter had speech delay I almost felt like giving up! I didn't want to go through it all again.... it seemed so unfair. However, I am so glad that I didn't give up. I worked really hard with her and today she is doing great. My youngest has speech delay as well and I thought to myself, "here we go again..." However, THIS time I have the knowledge and experience I have acquired over the years and that gives me an advantage. I have to remind myself that he is an individual and there are NO limits to his potential.
I feel so protective of my children, but especially my second child. He has been diagnosed with PDD (Pervasive Developmental Disorder), Tourette's (also known as "ticks"), and ADHD. One can only imagine the complications in trying to get him enough social interaction. He's an awesome kid and very intelligent. However, he lacks a lot of social skills and other kids his age don't understand him. Actually, many ADULTS don't understand him. I am just so thankful for the school he attends because he has made so many friends and the parents and teachers adore him! One thing that I worry about is the fact that my youngest looks and acts SO much like him. I have seen the "Sibling Effect" on numerous occasions and don't really know what to do about it. I feel like the only thing I CAN do is just educate others. They need to know that he is not like his brother. At the moment his only challenge is he is speech delayed. Of course with that comes other issues, but he is progressing and doing so well. I see a lot of his sister in him. I am quite optimistic about his future. He is speaking better than any of his siblings at the same age. That in itself gives me a lot of hope.
My hope is that someone will read this post and either #1: think twice about prejudging a child based on knowledge of a sibling or #2: know that they aren't alone and that others are aware of the problem AND that something can be done about it. We don't need to sit back and ignore something like this. The way a child is treated will shape the kind of person he/she will become. It doesn't matter if the child is typical or special-needs.... it's all the same.
*************************************
The worst thing you can do to a child
is ignore him.... but worse yet is to
prejudge him and form opinions before
even getting to know him.
*************************************
Monday, January 18, 2010
Knowing Your Rights
What are your rights as a parent in regards to services and help for your child as they get older? That was a question that was posed today by a mother of a teenager. She only has three years before her child is 18 years old. I haven't even thought about that since #1: my child is only 9 at the moment and #2: I am optimistic that my child won't need any services by then. However, it is better to be prepared just in case.
The first thing that comes to mind is SSI or social security benefits. However, I think it is based on household income so I am not sure how that works. Here are a few links with information:
http://www.child-autism-parent-cafe.com/social-security.html
http://www.autism-world.com/index.php/2007/10/14/does-children-with-autism-qualify-for-disability-benefits/
Sometimes you might need legal help. I found the following site and although I am not endorsing them or even familiar with the firm, I thought I would post it so that you can see some of the points they make on the site: http://www.socialsecuritylawfirms.com/resources/social-security/social-security-disability-coverage/child-autism.htm
I will try and do some extensive research and post my findings in the near future.
The first thing that comes to mind is SSI or social security benefits. However, I think it is based on household income so I am not sure how that works. Here are a few links with information:
http://www.child-autism-parent-cafe.com/social-security.html
http://www.autism-world.com/index.php/2007/10/14/does-children-with-autism-qualify-for-disability-benefits/
Sometimes you might need legal help. I found the following site and although I am not endorsing them or even familiar with the firm, I thought I would post it so that you can see some of the points they make on the site: http://www.socialsecuritylawfirms.com/resources/social-security/social-security-disability-coverage/child-autism.htm
I will try and do some extensive research and post my findings in the near future.
Monday, January 11, 2010
Importance of Continuing Education
Professionals such as my husband have what they call continuing education and it's required to maintain their careers. When I was a Medical Technologist we had to have certain amount of hours to maintain current on issues concerning the lab. Well... motherhood is one of the toughest jobs in the world. I feel strongly that moms (as well as dads) should also keep "current" on issues concerning their children.
Seminars, workshops, and various other events occur all the time in our city. Sometimes you have to keep your eyes and ears open, but they are available (usually free of charge) for parents. The city actually has a budget for education and it includes education for parents. Everyone knows that raising children has it challenges, but raising children with challenges poses a totally different kind of situation. I have seen so many people get divorced due to the stress and the financial burden that usually accompanies. It's no wonder that cities devote so much effort into educating parents.
I urge you to find out when/where seminars are offered. They are usually at churches, schools, and libraries. The more support we get, the better off we are. Don't ever feel like you have to do it alone. There are so many people who are too proud to ask for help or to accept it. I have to say that I've made some great contacts going to seminars and support groups. There is always strength in numbers.
**************************
A little help never hurts.
**************************
Seminars, workshops, and various other events occur all the time in our city. Sometimes you have to keep your eyes and ears open, but they are available (usually free of charge) for parents. The city actually has a budget for education and it includes education for parents. Everyone knows that raising children has it challenges, but raising children with challenges poses a totally different kind of situation. I have seen so many people get divorced due to the stress and the financial burden that usually accompanies. It's no wonder that cities devote so much effort into educating parents.
I urge you to find out when/where seminars are offered. They are usually at churches, schools, and libraries. The more support we get, the better off we are. Don't ever feel like you have to do it alone. There are so many people who are too proud to ask for help or to accept it. I have to say that I've made some great contacts going to seminars and support groups. There is always strength in numbers.
**************************
A little help never hurts.
**************************
Friday, January 8, 2010
Met a Remarkable Man Yesterday
I had to share this with you all because it just goes to show you that you can't judge someone without getting to know them first. I am so glad that I usually give people the benefit of the doubt.
The other day I was working out at the gym and a sweet gray-haired guy approached me about the Alabama Bowl game. He was so excited and he went on and on about the game. I had seen him before running around the neighborhood and could tell there was something "off" with him. When he talked he had a speech impediment and stuttered. He almost sounded like a stereotypical mentally retarded individual. It didn't help that English was definitely not his first language either. Normally, most women would have either walked away or felt uncomfortable... However, I began to listen to him and he was very articulate and his thought process was definitely normal. He just didn't SOUND normal and his motor skills were definitely impaired. After speaking to him he stopped and then said, "I am so sorry I sound like this... It's hard for me to speak. I have what the doctors call TBI (traumatic brain injury) and I am working hard to get my body back to normal. It has been a year now and I work every day to get stronger. I run two miles, I then get a little rest and then do jumping jacks to work on my motor skills. I spend most of the day exercising my body and mind. Up until recently I could barely talk and my balance was not very good. I live with my brother and he thinks I work too hard. I am not going to give up though. I have hope that one day I will be normal again. I have spoken to other individuals and it took them TWO years to get to where I am. That gives me so much hope."
I felt like crying after he explained that to me. It definitely made me look at myself and how sometimes we judge people subconsciously. It also made me think about society and how probably he must be treated on a daily basis. Do people treat him with respect? I sure hope so. Do people listen to him when he talks or just ignore him? I can only imagine.
I am so fortunate to have a healthy body and mind. I am thankful for my health and I treasure every day that I can work out and do what I want to do. I know that others are not so lucky and that it can all change in a blink of an eye.
*************************************
A healthy body and mind are worth
more than all the money in the world.
*************************************
The other day I was working out at the gym and a sweet gray-haired guy approached me about the Alabama Bowl game. He was so excited and he went on and on about the game. I had seen him before running around the neighborhood and could tell there was something "off" with him. When he talked he had a speech impediment and stuttered. He almost sounded like a stereotypical mentally retarded individual. It didn't help that English was definitely not his first language either. Normally, most women would have either walked away or felt uncomfortable... However, I began to listen to him and he was very articulate and his thought process was definitely normal. He just didn't SOUND normal and his motor skills were definitely impaired. After speaking to him he stopped and then said, "I am so sorry I sound like this... It's hard for me to speak. I have what the doctors call TBI (traumatic brain injury) and I am working hard to get my body back to normal. It has been a year now and I work every day to get stronger. I run two miles, I then get a little rest and then do jumping jacks to work on my motor skills. I spend most of the day exercising my body and mind. Up until recently I could barely talk and my balance was not very good. I live with my brother and he thinks I work too hard. I am not going to give up though. I have hope that one day I will be normal again. I have spoken to other individuals and it took them TWO years to get to where I am. That gives me so much hope."
I felt like crying after he explained that to me. It definitely made me look at myself and how sometimes we judge people subconsciously. It also made me think about society and how probably he must be treated on a daily basis. Do people treat him with respect? I sure hope so. Do people listen to him when he talks or just ignore him? I can only imagine.
I am so fortunate to have a healthy body and mind. I am thankful for my health and I treasure every day that I can work out and do what I want to do. I know that others are not so lucky and that it can all change in a blink of an eye.
*************************************
A healthy body and mind are worth
more than all the money in the world.
*************************************
Saturday, December 26, 2009
Does My Story Sound Familiar?
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.
***********************************
God bless you and yours.
Merry Christmas and Happy New Year!
***********************************
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.
***********************************
God bless you and yours.
Merry Christmas and Happy New Year!
***********************************
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!!
************
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