Thursday, February 18, 2010
Maybe there is hope for me and someone who can relate to what I am going through, now I don't expect that I will ever meet this person that wrote the book that I am reading however, whether or not I know that we are connected.
So before I continue I guess that I should state the name of the wondrous book for me: Spelling Love with an X, by Clare Dunsford.
This book was bought for me by a good friend and my son's therapist as a gift, I am always into reading and learning more about the genetic disorder that I passed on to all of my children. My son took the rougher end of it because he only has one X and his mutation of the X Chromosome is rather high, which gives him the moderately to severely mentally disabled.
I have began to read this book the women stated that she knew that there was something not quit right with the way her son was responding to everything and that she knew that her son had something that made him different and that made him special. I felt the same way about my son, now I know that every parent thinks that their child is special in their own way. But the kind of special that she and I am talking about is something completely different, Xavier didn't act or show emotion to me the way that my daughter had.
Our bond was missing, I loved my son like no other but the connection that I felt with Nicole was missing. At first I thought that maybe it was me and I was the cause of this problem, that Xavier and I didn't connect the way you hear about with a mom's boy. Now don't get me wrong he is my love and my only son but he never really had held a connection the way that my girls do. Clare talks about the same feeling and this gave me a warmer sense that this maybe a common issue with X, (for the duration of my writing I am going to refer to Fragile X I am just going to refer to it as X). I have read may articles and books concerning X however, reading something from someone who is living with it and not just a doctor who has done research.
As I began to read about her concerns towards her son's development and the feeling that she was the reason for it and back when she was first told about it and her denial towards the possibility, I saw my first reaction towards the doctors orders for the blood work.
Once he got tested and we were told to go see the genetics doctor, they gave me information about X and things took a long history. While there I wanted to point the blame of what was wrong with my son on his 'father' as well. However Clare like me forgot basic science and that X chromosomes are just passed to the son by the mother.
Now all of my kids have the mutation and my daughters don't have the full mutation, however if the ever have kids they are looking at a 50/50 chance of their kids having it. I know that IF I ever have a child my odds are higher because of all of my children mutation.
Clare understood that she would have to sit down and have the 'talk' with her family and I would have to do the same. I talked with my mother because I knew that if she had it all of my siblings might and this would need to be something that is talked about with them too. However, because I am a girl and I got both and X from each parent it was concluded that I must have gotten it from my 'father'. This would help me to understand later while my mother told me about my 'father's' side of the family and my uncles disabilities. This is a disorder that is hidden and like a nasty infection is will show itself when it is ready and some may end up with X and others can live a while life and never know it. My grandmother most likely never knew that she had it and if I didn't ever have a son I would probably be in the same boat.
But at the end of the day I know that I am not alone and I can do this! I am going to continue reading this wonderful book and maybe mention her in the blog from time to time.
Monday, February 15, 2010
My wonderful son makes me go though every emotion though-out one day without even trying, yet I will love him forever unconditionally.
No matter how stressed out I become with the fact that he picks up words and just spits them out and I am not sure if he even knows what they mean or if he just copies what the girls say. First the word 'yep' showed up and that was all he would say, it didn't matter if it was: "Did you pee in your pull up?" to "Are you going to stop crying?" Then he would start crying all over again. So in a way I just began to see that no matter what I would ask him he would respond with a 'yep.' Than he began to stop with the 'yeps' and moved to 'I know,' and when I began to look at all the things that he was saying I wondered even more if he was just coping his sisters. Nicole, my oldest, whenever she would get talked to about something she knew she didn't need to be doing or if she didn't do her homework when she got home, I would talk to her about it and she would respond with, 'I know,' as time began to pass from all of this I seen that my son started to say the same things. So is he really talking or is he just saying things that he hears. I know that you can split hairs and say well he is talking but I am talking about meaningful talking. Words that he really knew what they mean and that he is using them in the right way.
If you sit back and listen to him while no one else is around you will hear all kinds of noises and sounds, but are they meaningful that would be considered 'communication?' In my eyes I feel that he tries when he wants to but only when he wants to and on his time.
Ever since my son was first in therapy we have tried to work with signs and pictures to try and help him to express his needs and that has worked some however, he is never consistent with using them, even though we keep working at them. I have fought to get him a communication device and I am going to he working with his school and therapist to try and get him to either use the device and start talking or just use the device to express his needs.
He has come along way in the past few years since he was first diagnosed with the Fragile X and Autism. We are taking his progress one day at a time, even though he may never talk, be potty trained or do any of the things most kids do, I still have hope and I will always fight for him to be the best no matter how far he can go!
I love my baby boy and my two wonderful daughters!
Thursday, February 11, 2010
I took Bubba into his appointment with the new doctor and they did check up and told me to take Bubba for blood work. At first I was like… blood work what is wrong with my son? What will the blood work show? Will this help? Then, we got the call to come back about a month later because the test took that long to get the results. I went in and she said…”The results show that your son Xavier has Fragile X Syndrome. This is a genetic disorder that is just now coming known.” I had many question and she sent me and Bubba a genetic specialist and they explained it. They said that Bubba would show signs of Autism and later in life he would probably diagnosed with it. He was 2 1/2 years old when I found this out and Bubba will be 8 years old this year.
I wish that I could say that he could talk, make eye contact or communicate with out crying … but I can’t. Xavier may not able to do that and but he can do so much more! His smile brings my heart to life, his hugs are gentle and his heart is pure. I love my son, however things are not as easy as many want to try and make it to be when you have a child with a disability. I am a mother of three, married, car driving, therapy and doctor taking, full time college student, manager of my husband’s band and the strong hold for my mother and brothers. My days start before the sun comes up and ends … well some days they don’t end at all. I start the day with getting myself ready at 5 am, kids ready for school, off to school for me and home for therapy and appointments, supper, homework, baths, fussing and fighting siblings, bed time and dealing with a band and all the stresses of the members, booking and gathering things for them to become rock stars. Having a husband that is not the father of your children is a little hard, but he loves them as if they were his own. My husband is the lead guitar player and things with the band are stressful, but my son loves to get up there and play his fake guitar and make noises as his ‘daddy’ plays guitar. I wish that everything went as smooth as it sounds on paper but it is all chaos. Bedtime is the hardest because Bubba never wants to sleep and he is up off and on all night. But of all the things that I have going on in my life and all the times that I want to give up or just stop all the madness all that I must do is look into my children's eyes and I know why I must go on. Life with kids in not easy, but life with a child with special needs is hard. Xavier needs so much, cries about everything, wonders into his own little world, and is constantly being told not to do this or that. But no matter what I know that no one else can do for my son what I can and no one else will have the chance! Because at the end of the day when I am ready to break from all the madness and I am ready to walk away for a while… one thing always brings my heart and mind back into it and that is my children’s smile.
A real stuffed kind of helper! I was told by a friend and therapist to get Xavier a bear that none of the other kids can play with and one that he would like. Well, I thought to myself that this would be worth a chance because anything that will help is worth a chance even if it works for just 2 minutes a day! Well, I wanted to take him to Build a Bear Workshop… but those bears are expensive. One day we were out and I saw a Beanie Baby store and my son got excited. So we went inside and in this store we found a little reindeer that he just grabbed and he hardly lets go of it. This bear sleeps with him, goes to the doctors, therapist with him and school (if I let him). He makes noises to the bear and hugs and loves on it. I love this little bear, because of the look that he gets in his eyes as it to communicate it to the reindeer… but who really can say if he is or not in his mind.
At the end of everyday, I stop and try to remind myself of everything that I means the world to me and that one day, with any luck at all things will be a bit dull and there will be a time when I can stop breathe and think to myself that my life is dull. However, why would I ever want that to happen, because I love that my son is different and that my daughters understand that he is different and they will grow up with the knowledge that there are others in this world who are different and that maybe they are just the same, just with a special touch.
Tuesday, February 9, 2010
As I sit here I wonder what we are all working towards. I mean, how can you be sure that all that you are doing is the right thing and that all that is going on is a trail just to make you stronger… we all know the saying and at times I am guilty of using it but how can we really be sure that the saying is true?
"What doesn't kill you will make you stronger."
How can you really know if it is not killing you? Well, let me explain it this way, our bodies wear down as we resist things that are going on in our lives…like we resist that dog that is after us or the cancer that we have had for years and we don't let it take our lives. Because at that point that we stop resisting that cancer (sickness) is the moment that we pass on because we let our bodies give up on all the fighting or we just can't fight anymore.
So when you think that you can't do it anymore, remember that you can as long as you fight you can keep going. Now back to the quote or saying, the longer that we keep fighting our immune system breaks down and we become tired…
So how can we say; "what doesn't kill us makes us stronger," but does it mean that we are fighting to make us stronger inside then we can ever imagine right now but later in life better, a stronger soul and heart to help us gain a love and understanding for all things that make us who we are the very next day?
Or could it be just a crock that we say to help us make it through to the next day that we really are not sure it we want to resist the next set of trials. I have many trials in my life and I just sit here and wonder why the things are going on in my life and the trials are they really to make me stronger, is it just a cruel joke that is played on the whole of people that fight all their life and still fight as long that day goes on and we can't seem to get out of this hole and yet we are not really in a point in our lives to go on.
All the garbage that we find about love is just garbage because we all need to find our own meaning of love and not follow the norm…because I know that my love for Jason is unlike any of that found in a story book because it is so much more and still I can't put it into words…but I am not really sure that I should, because I know that I don't have to justify the love that I have for him because he knows…sometimes more then I do!
Only thing wrong with love, faith, belief and the heart is not having it in your life.
How do we know.....
If we are doing the right thing in life?? I ask this today because I am in a I don't want to be in college mood and as I look at the classes I have right now and who I have become since just last year even, I am forced to wonder....
Am I doing the right thing?? Not working and just going to college?
Should I do something else??
What if I am wrong about the career??
I am great with people and most who know me know that I am great at listening, not judging, and I love to help!
However, I have a great love for all things music and managing bands has been a great thing and I have the attitude for that and so much more that is needed!
I really don't know what I supposed to do... really life is rough right now and I want to do something that is going to make me happy and give my kids a great life but what if I choose wrong.... how do we know?? How do I know???
Is there a map in the sky? A hidden book that we all should read about ourselves but is hidden in a far off land?? How do we know?? How do I know???
I can't figure out what to do... I love psychology and helping people is something that I love to do and I love to understand the human mind and the reasons why we act the way we do. However, music is my life and I find all things that go with it is great or challenging... I love it!! But how do we know what to do?? How do I know what to do???
I love psychology and music, what should I do???
How do we know??? How do I know??
Last semester I decided to change my major from psychology to an entrepreneur degree. Now I know that I can use my BA in business to walk in a get a job in music or what ever else that I want to do. But is this the right thing to do... or is it just that I am wore out all the time from the same daily shuffle of class, kids, house stuff, husband.... and repeat and repeat. Is this what I am destine for? To repeat this endless shuffle? Or is this just what I have to do for now to get to the smoother parts of life. How do we know??? How do I know??
How do we know??? How do I know??
We all hit times like this, or so I hope... maybe others are out there that feel the same way and just don't know what to do or really have anyone to talk to this kinds of things and more. How do we know?? How do I know?? If others are there with me in the same place?
How do we know??? How do I know??