For some reason I have to choose to take my son to doctors that are almost 100 miles away. When there are the same type of doctors closer by..
Wait I know why I put my son and I though that torture... because the doctors that are further away know what FX is.
So Lil Man, my youngest daughter and I made the long trip up to UofL Pediatric Neurologist, and I learned some intreating things and the doctor made me feel a little better!
Lil Man has had one major seizure and some small ones.. that we know of. Well, I asked the Dr.. if there was a possibility of brain damage from his seizures because he is having some trouble with learning certain things.
His therapist is working with picture cards to improve his speech and identification skills. He can master pictures of chicken nuggets, cows, cats and dogs, just to name a few. He can do most of them with just being showed the picture and asked "what is this' he may need a prompting or two, however there are very few problems with it.
However, we are also working on X, A, 1, and 2 and this is where the trouble starts for him. He is having trouble remembering what they are and even after being prompted 3-4 times and being told what the cards are he still hasn't mastered them. We have worked on just those four for about 6 months now.
After explaining why I wondered if there was brain damage preventing him from learning different things, he explain that he didn't think so. He said he felt as though it was just the affects of the Fragile X on his ability to learn certain things.
While this is not the greatest news to hear, it does make me feel a little better to a. know that there is not brain damage (none found anyway) and b. that maybe he will learn it all on his own time. Just like his ability to speak.
The long drives make it all worth the trip to have a doctor who knows what FX is and I don't have to explain it first!
Monday, January 3, 2011
Saturday, October 23, 2010
Explain Fragile X to Me..
What is fragile x?
The mutation of the x chromosomes...
Most inherited genetic disorder...
Can cause Autism or Autism like symptoms... blah, blah, blah,
Scientific speech that almost feels rehearsed rather than really give and explanation of what it really is.
Most of the time this is what I say over and over again as new people enter into our lives, whether they are there for as a professional who went to college to study disabilities and other things or they are just asking about my son.
However, is the scientific explanation what Fragile X really is or is it just what we have said so many times that we leave out the rest of the true explanation about it?
Do we leave out the good things or the bad because it is too much to talk about?
Or do we just not talk about them because then we feel like we are dumping our life story on someone?
Or does it boil down to whatever reason we give ourselves to not talk about the depth of how fragile x really has affected us or our children??
For the most part I leave out the facts that my son loves to give hugs, is generally a happy child, and is a loving little boy.
I leave out the stresses of not being able to communicate with my son and vise versa.
It is left out that he throws fits because he is unable to communicate and he throws fits when ever it is most inappropriate.
Fits at restaurants for reasons that are unknown and that most would think that he would not due to his love of all things food and drink.
Fits occur at school and they deal the best they can.
Fits occur when we are out in public, so I try and limit where he goes in hopes that it will make things easier on everyone but most of all him.
I take my son out based on many factors that most wouldn't even think about when getting their kids ready to go out into the world beyond the comforts of home.
I judge where we are going, what day of the week it is, who is going with us, and most important: what his general mood is that day. Because even if everything is right and he is not... I feel like I am asking for whatever happens.
But the most stressful thing about going one aside from the fits are the ones that occur in the car while we are headed away from home, where he wants to be.
The fit he gives when we head home, to the place I know he wants to be most of all.
Fits going home stress me out because he knows that we are going there and that is where he wants to be...
Yet he throws a fit.
There are things that I know I can't get out of taking him... no matter what he his day is like.
We can't get out of doctors, therapy, school and every other thing that he may not want to do.. but we fight with him and drag him along. Even when I would love to just let him be happy at home.
I leave out that he is not potty trained at almost 8 years old and we have hopes that MAYBE one day he will be able to use the potty.
But I am realistic that it might not happen any time soon.
But if I had to say the most important thing I leave out is:
The loneliness that I feel when fragile x is on my mind..
I lack the having my 'father' and his side of the family, from whom I got this gene from, and their knowledge and understanding of what X has done to change my life..
Forever...
Don't get me wrong I have a wonderful husband that is amazing with all of my kids and with me. Even if he don't understand me all the time.. he really does his best! <3
I have his wonderful family who has accepted me and my kids into their lives without judgment; but, with understanding and the want to learn about X.
I have my mother who still don't quite understand me, but tries to and she don't mind how crazy I can be.
All the wonderful people who have entered my life since fragile x has become one of the terms to describe my kids and I.
Including those who I just met on Facebook!
But at the end of the day I don't really know much about how this X has affected ME mentally and physically... among other things.
I don't know how this X has affected my children... other than what I can see and they try and tell me.
Most of all, I don't feel like I can talk about what is going on within me and how it has affected me in ways that I don't even understand at times.
These are some of the things that I don't talk about to those who ask what Fragile X is, what the blood test showed in 2004 and how it has changed my life forever!
The mutation of the x chromosomes...
Most inherited genetic disorder...
Can cause Autism or Autism like symptoms... blah, blah, blah,
Scientific speech that almost feels rehearsed rather than really give and explanation of what it really is.
Most of the time this is what I say over and over again as new people enter into our lives, whether they are there for as a professional who went to college to study disabilities and other things or they are just asking about my son.
However, is the scientific explanation what Fragile X really is or is it just what we have said so many times that we leave out the rest of the true explanation about it?
Do we leave out the good things or the bad because it is too much to talk about?
Or do we just not talk about them because then we feel like we are dumping our life story on someone?
Or does it boil down to whatever reason we give ourselves to not talk about the depth of how fragile x really has affected us or our children??
For the most part I leave out the facts that my son loves to give hugs, is generally a happy child, and is a loving little boy.
I leave out the stresses of not being able to communicate with my son and vise versa.
It is left out that he throws fits because he is unable to communicate and he throws fits when ever it is most inappropriate.
Fits at restaurants for reasons that are unknown and that most would think that he would not due to his love of all things food and drink.
Fits occur at school and they deal the best they can.
Fits occur when we are out in public, so I try and limit where he goes in hopes that it will make things easier on everyone but most of all him.
I take my son out based on many factors that most wouldn't even think about when getting their kids ready to go out into the world beyond the comforts of home.
I judge where we are going, what day of the week it is, who is going with us, and most important: what his general mood is that day. Because even if everything is right and he is not... I feel like I am asking for whatever happens.
But the most stressful thing about going one aside from the fits are the ones that occur in the car while we are headed away from home, where he wants to be.
The fit he gives when we head home, to the place I know he wants to be most of all.
Fits going home stress me out because he knows that we are going there and that is where he wants to be...
Yet he throws a fit.
There are things that I know I can't get out of taking him... no matter what he his day is like.
We can't get out of doctors, therapy, school and every other thing that he may not want to do.. but we fight with him and drag him along. Even when I would love to just let him be happy at home.
I leave out that he is not potty trained at almost 8 years old and we have hopes that MAYBE one day he will be able to use the potty.
But I am realistic that it might not happen any time soon.
But if I had to say the most important thing I leave out is:
The loneliness that I feel when fragile x is on my mind..
I lack the having my 'father' and his side of the family, from whom I got this gene from, and their knowledge and understanding of what X has done to change my life..
Forever...
Don't get me wrong I have a wonderful husband that is amazing with all of my kids and with me. Even if he don't understand me all the time.. he really does his best! <3
I have his wonderful family who has accepted me and my kids into their lives without judgment; but, with understanding and the want to learn about X.
I have my mother who still don't quite understand me, but tries to and she don't mind how crazy I can be.
All the wonderful people who have entered my life since fragile x has become one of the terms to describe my kids and I.
Including those who I just met on Facebook!
But at the end of the day I don't really know much about how this X has affected ME mentally and physically... among other things.
I don't know how this X has affected my children... other than what I can see and they try and tell me.
Most of all, I don't feel like I can talk about what is going on within me and how it has affected me in ways that I don't even understand at times.
These are some of the things that I don't talk about to those who ask what Fragile X is, what the blood test showed in 2004 and how it has changed my life forever!
Sunday, September 26, 2010
If you only knew how I felt
No I don't want to talk to you about my issues.
You could never understand.
Aside from the fact that your views on the subject
are the complete opposite of mine.
I have spent most of my life dealing with this,
Never to completely get over it.
This will never be an accepted issue
on my part.
If you knew what happen,
You would get why I am offensive about the issue.
You could never understand.
Aside from the fact that your views on the subject
are the complete opposite of mine.
I have spent most of my life dealing with this,
Never to completely get over it.
This will never be an accepted issue
on my part.
If you knew what happen,
You would get why I am offensive about the issue.
Tuesday, August 31, 2010
public outbusts
Public places are a nightmare for my little man!
To say that would be to make the biggest understatement of the year.
I can't imagine what must be going on in his mind and body as we enter into public places.
The stimulation from the lights, sounds and large areas, are hard enough on a 'normal' person. But what is going on for him?
That is something that I can't answer, nor can he with his limited communication skills. However, that don't stop him from have a huge melt down in public places that a. we go to everyday or a few times a week or b. avoid at all cost.
We can get ready to leave the house and take the kids out for dinner. Now, let me tell you my son LOVES to eat, he is the happiest when he has food in his hands. We have a few places that we go because that is what the kids love and it is cheap enough!
He and I don't attend church because he can't handle the noise or the silence and I can't handle people touching me or saying something about my son's outburst!
His fits in public are much worst when there are people looking at him. I have learned what can and can't be done to calm him. But when people are looking and making comments, that is the moment I can't handle.
Maybe one day we can take him anywhere and not have to worry about how he is going to act or what others are going to say and how I am going to react. Because lets face it when you say something about my son I become defensive and there are defiantly times that I don't react the way that I should.
But he is my son and I will stand up for him at all cost!
To say that would be to make the biggest understatement of the year.
I can't imagine what must be going on in his mind and body as we enter into public places.
The stimulation from the lights, sounds and large areas, are hard enough on a 'normal' person. But what is going on for him?
That is something that I can't answer, nor can he with his limited communication skills. However, that don't stop him from have a huge melt down in public places that a. we go to everyday or a few times a week or b. avoid at all cost.
We can get ready to leave the house and take the kids out for dinner. Now, let me tell you my son LOVES to eat, he is the happiest when he has food in his hands. We have a few places that we go because that is what the kids love and it is cheap enough!
He and I don't attend church because he can't handle the noise or the silence and I can't handle people touching me or saying something about my son's outburst!
His fits in public are much worst when there are people looking at him. I have learned what can and can't be done to calm him. But when people are looking and making comments, that is the moment I can't handle.
Maybe one day we can take him anywhere and not have to worry about how he is going to act or what others are going to say and how I am going to react. Because lets face it when you say something about my son I become defensive and there are defiantly times that I don't react the way that I should.
But he is my son and I will stand up for him at all cost!
Wednesday, May 26, 2010
Not as Stong as I Seem.
I got told today that someone was amazed that I have not had a break down. That I have not freaked out or had a nervous break down. They told me that there were some people in some sort of same position as me who don't have it as 'rough' as me who just lose it and freak out.
There are times when I wonder the same thing, how can I be strong enough to handle three kids, one on the way, a husband, school and a messed up mind like mine.
I am not as strong as I seem to be!
It is a every day fight for me to keep from falling apart, on the outside you would never know it because I am mean, I am a fighter and I don't let things get to me that most people would let in.
I have lived my life knowing that there was something not quite the same as others around me. Knowing that my life was different, inside my mind I was different.
Knowing that everyone is different, but I carried something that I would later in life learn really made me different. There was a reason that might help explain why I may act sane one day and not quit the same the next, crazy almost.
I am bipolar and I feel that when I was 14 and I was told that this would explain everything that I was going to be going through, yet I knew that there was something more.
Over the years since I found out that I was bipolar I figured out that this was something that I was going to have to live with and not let it control me.
This was what keeps me going, it was not letting my 'disorder' control me.
I have lived life one day at a time and I have let my disorder take over my life and run me, like when I was 15. And yet I would never go back and change what I have done in my past, but I would not want to do it again while I am this age and ever changing in my daily life.
15 was a hard age for me, while I did have lots of fun I learned that I can't let my disorder rule me like it did then.
Now I will not lie to you, there are times in my life that I can't control what is going on the inside/outside of my head, but the difference is that this time I can see the problems that I am facing and I can push though them, I can channel all the things to move me forward and out of the troubled minds that lead ahead for me.
I have learned my triggers, how to stop them from ruling my life and how to show myself that I am in control of me and not my 'disorder'. For that I am truly a happier person.
So, when you look at me and think how I am as strong as I appear, just remember that I am not as strong as I look, but I am strong enough to get me through!
There are times when I wonder the same thing, how can I be strong enough to handle three kids, one on the way, a husband, school and a messed up mind like mine.
I am not as strong as I seem to be!
It is a every day fight for me to keep from falling apart, on the outside you would never know it because I am mean, I am a fighter and I don't let things get to me that most people would let in.
I have lived my life knowing that there was something not quite the same as others around me. Knowing that my life was different, inside my mind I was different.
Knowing that everyone is different, but I carried something that I would later in life learn really made me different. There was a reason that might help explain why I may act sane one day and not quit the same the next, crazy almost.
I am bipolar and I feel that when I was 14 and I was told that this would explain everything that I was going to be going through, yet I knew that there was something more.
Over the years since I found out that I was bipolar I figured out that this was something that I was going to have to live with and not let it control me.
This was what keeps me going, it was not letting my 'disorder' control me.
I have lived life one day at a time and I have let my disorder take over my life and run me, like when I was 15. And yet I would never go back and change what I have done in my past, but I would not want to do it again while I am this age and ever changing in my daily life.
15 was a hard age for me, while I did have lots of fun I learned that I can't let my disorder rule me like it did then.
Now I will not lie to you, there are times in my life that I can't control what is going on the inside/outside of my head, but the difference is that this time I can see the problems that I am facing and I can push though them, I can channel all the things to move me forward and out of the troubled minds that lead ahead for me.
I have learned my triggers, how to stop them from ruling my life and how to show myself that I am in control of me and not my 'disorder'. For that I am truly a happier person.
So, when you look at me and think how I am as strong as I appear, just remember that I am not as strong as I look, but I am strong enough to get me through!
Thursday, May 13, 2010
Letter to a man I don't really know...
I just want to call him, yell and get all the anger out of me...
To make things better, for me
To make me better
I want him to know everything I went though while he was gone and how I felt about things,
So I wrote a letter, for me
To make things better for me!
Warning, what I have to say in this letter is not going to be nice; it is not going to be kind. Because at the end of the day this is not about you, this is about Anthony and I. As of right now I can’t talk for Anthony however, I can talk for me and this is everything I have to say and must say for me! I would tell you everything over the phone but as of right now that would not be the best for me. So if you do not want to hear the cold mean truth from me than I would recommend that you do not read anymore than this.
I have often wondered what I would say to you if we ever crossed paths or came in contact with each other. When I was younger my only question was “WHY?”
… did you leave us when you tried to fight for us in court? Hell, why did you leave?
Now I know that it was not all your fault that there were 4 key players, my mother, grandparents and YOU, for you not being in our life. But you were the one who was not there at the end of it all. 20 years after not knowing if you were dead or alive and having no contact with much of your side of the family, until 2000 I had not talked with any of them. Once I had talked with Doug it was only for a short time (a month max) and he had no insight as to where you were. However, I do have a connection with them and I plan to keep it that way!
When we talked on the phone for the first time, it pissed me off, so much that I was never sure that I wanted to talk with you again. When you informed me that you were easy to find and WE should have found you. WE, WE, we were the kids in the picture and it wasn’t up to us and should have never been left up to us! I will admit that we did look for you, but at the end of the day YOU should have been the one to find us. Did you know that I made it easy, my entire life to be found on the internet, I kept me maiden name open while I have been married in hopes that MAYBE you would look for us… maybe.
But after I was about 17 I decided that I didn’t want a man in my life that clearly didn’t put forth the effort to be in mine, because at the end of the day you were not there. While I still have issues with that fact I didn’t let it rule my life!
When we talked I almost felt you wanted me to feel guilty for you because you have been off drugs and fought really hard to stay clean and that you wanted to take care of you. Well, that is all well and fine however, my mother went through her AA and NA, taking us along the way to make sure that she fought for herself and us. Since, she has gotten clean, my mother has fought with being clean, but you know what she did it and raised us!
While you may have had many surgeries and a rough life, dealing with yourself. But I have had it rough too, because as a kid I wondered what I did to make you leave, what I did wrong. Only to learn that it wasn’t me, it was YOU.
Clearly I am not a nice person, I have been told many times that I am rather mean, but you know what, I really don’t care because I speak my mind!
As for you coming out here, which would not be for the best, because I am not sure that I even want to see you right now. You see I am bipolar to the extreme and the built up anger and issues that I have with you wouldn’t be good for me. I am not sure how I would react to seeing you. So please don’t make any major plans to come out here.
If I end up coming out to Cali, don’t expect me to come and see you because I am not sure that I really want to as of now. Also, why should I allow you to be in my life now, family is the most important thing for me and I will not allow you to come in a mess up the happiness that I have built without you.
We can talk on the phone and maybe just maybe one day I may be ok with you coming out here, but that is a LONG time from now.
To make things better, for me
To make me better
I want him to know everything I went though while he was gone and how I felt about things,
So I wrote a letter, for me
To make things better for me!
Warning, what I have to say in this letter is not going to be nice; it is not going to be kind. Because at the end of the day this is not about you, this is about Anthony and I. As of right now I can’t talk for Anthony however, I can talk for me and this is everything I have to say and must say for me! I would tell you everything over the phone but as of right now that would not be the best for me. So if you do not want to hear the cold mean truth from me than I would recommend that you do not read anymore than this.
I have often wondered what I would say to you if we ever crossed paths or came in contact with each other. When I was younger my only question was “WHY?”
… did you leave us when you tried to fight for us in court? Hell, why did you leave?
Now I know that it was not all your fault that there were 4 key players, my mother, grandparents and YOU, for you not being in our life. But you were the one who was not there at the end of it all. 20 years after not knowing if you were dead or alive and having no contact with much of your side of the family, until 2000 I had not talked with any of them. Once I had talked with Doug it was only for a short time (a month max) and he had no insight as to where you were. However, I do have a connection with them and I plan to keep it that way!
When we talked on the phone for the first time, it pissed me off, so much that I was never sure that I wanted to talk with you again. When you informed me that you were easy to find and WE should have found you. WE, WE, we were the kids in the picture and it wasn’t up to us and should have never been left up to us! I will admit that we did look for you, but at the end of the day YOU should have been the one to find us. Did you know that I made it easy, my entire life to be found on the internet, I kept me maiden name open while I have been married in hopes that MAYBE you would look for us… maybe.
But after I was about 17 I decided that I didn’t want a man in my life that clearly didn’t put forth the effort to be in mine, because at the end of the day you were not there. While I still have issues with that fact I didn’t let it rule my life!
When we talked I almost felt you wanted me to feel guilty for you because you have been off drugs and fought really hard to stay clean and that you wanted to take care of you. Well, that is all well and fine however, my mother went through her AA and NA, taking us along the way to make sure that she fought for herself and us. Since, she has gotten clean, my mother has fought with being clean, but you know what she did it and raised us!
While you may have had many surgeries and a rough life, dealing with yourself. But I have had it rough too, because as a kid I wondered what I did to make you leave, what I did wrong. Only to learn that it wasn’t me, it was YOU.
Clearly I am not a nice person, I have been told many times that I am rather mean, but you know what, I really don’t care because I speak my mind!
As for you coming out here, which would not be for the best, because I am not sure that I even want to see you right now. You see I am bipolar to the extreme and the built up anger and issues that I have with you wouldn’t be good for me. I am not sure how I would react to seeing you. So please don’t make any major plans to come out here.
If I end up coming out to Cali, don’t expect me to come and see you because I am not sure that I really want to as of now. Also, why should I allow you to be in my life now, family is the most important thing for me and I will not allow you to come in a mess up the happiness that I have built without you.
We can talk on the phone and maybe just maybe one day I may be ok with you coming out here, but that is a LONG time from now.
Monday, May 3, 2010
What is Fragile X?
On the eve of everyone knowing that I am going to have another child, I am led back in time to when I found out that my son and daughters were diagnosed with Fragile X.
All the emotion and fears that came to my mind when I was told what was going on, and how our lives would change from that moment on.
I tried to explain what the outcome of me having another would mean to the baby and what it would mean for the family. I find that even though I had explained it before when this little life is brought into the world, denial for what I carry and pass onto my kids come from outside sources.
The idea that if this child is a boy that 'it' will not suffer with the Fragile X as my son does is Ludicrous! The doctors told me that the likely hood would be slim to non existent. But hay what do they know... they only study it for a living.
I hope for a girl, but the outcome of a girl is likely to be the same as my son is a possibility (smaller but still.)
We are not ready for another baby, but I will love the baby and we will make it!
But definition Fragile X is:
Fragile X is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities (sometimes referred to as mental retardation). Symptoms also can include characteristic physical and behavioral features, anxiety, and delays in speech and language development. Fragile X syndrome is also the most common known cause of autism or "autistic-like" behaviors.
In my world, Fragile X is a family member that has changed everything I knew about life and love. My son has opened my eyes to a world that is different and scary. But most of all it has become a world that is not negative, but a life changing even for us all.
All the emotion and fears that came to my mind when I was told what was going on, and how our lives would change from that moment on.
I tried to explain what the outcome of me having another would mean to the baby and what it would mean for the family. I find that even though I had explained it before when this little life is brought into the world, denial for what I carry and pass onto my kids come from outside sources.
The idea that if this child is a boy that 'it' will not suffer with the Fragile X as my son does is Ludicrous! The doctors told me that the likely hood would be slim to non existent. But hay what do they know... they only study it for a living.
I hope for a girl, but the outcome of a girl is likely to be the same as my son is a possibility (smaller but still.)
We are not ready for another baby, but I will love the baby and we will make it!
But definition Fragile X is:
Fragile X is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities (sometimes referred to as mental retardation). Symptoms also can include characteristic physical and behavioral features, anxiety, and delays in speech and language development. Fragile X syndrome is also the most common known cause of autism or "autistic-like" behaviors.
In my world, Fragile X is a family member that has changed everything I knew about life and love. My son has opened my eyes to a world that is different and scary. But most of all it has become a world that is not negative, but a life changing even for us all.
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