First of all I apologize for not updating this in quite some time, I guess I got wrapped up in every day life and forgot to blog.
To catch you all up to date we have a diagnosis... Rett Syndrome ( google it if you want, though I don't recommend it...) Our world has literally turned upside down, well maybe thats a bit dramatic... But I have felt alone - Isolated... I needed time to process this diagnosis... I needed time to heal from the shock of it. What I want everyone to know and what we all want you all to know, is Taylor is still Taylor. She is still our sweet, bubbly, sometimes grumpy, energetic, elephant loving Taylor... I can go on, but y'all get the picture... Soon we will start ABA ( applied behavioral analysis) long name for basically helping us help Taylor control all of her behaviors good and bad.
To say I have been overwhelmed is an understatement, I have felt anger, sadness, guilt and acceptance, I have gone through them all several times now. I am angry that no doctor thought to test before now, I am sad that one day who knows when hopefully fifty million years from now, Taylor will slowly slip farther and farther away, I have guilt that I should of known, I should of fought harder... you name it I have felt it. But it all comes back to acceptance. I have to accept that this is what it is. We will continue to fight, therapies for as long as we can and then some... but we will fight.
So with that I leave you with this - take each second to tell your children you love them, to spend as much time with them as you can, to always forgive yourself... and take it all one step at a time!
Thursday, May 15, 2014
Friday, November 1, 2013
Tolerance and Acceptance
*** THIS POST IS HEATED***
When I found out I was pregnant with Taylor - my life changed. I instantly had dreams, dreams of her being in every preschool/toddler class I could find for her - Music class, Open Gym, play dates, Mommy and Me tumbling... you name it I thought of it. When she was born at 31 weeks and I saw my daughter for the first time, these dreams changed to just praying she would live. I was raised with the morals of tolerance and acceptance. My parents allowed me to work with special needs kids and they were proud of me for doing it, they also allowed me to take sign language instead of Spanish, knowing that Spanish in this country would get me further - but learning sign language and about the deaf community I learned so much more than another language. I learned acceptance and tolerance far greater than my parents ever taught me.
When Taylor was born super early and missed important milestones in her development, I knew that God has blessed me with the gifts of acceptance and tolerance. At the age of 14 months old, Taylor started therapies. I was thrown into a world that I never dreamed of. But one foot in front of the other, I realized that the toddler music class was probably to loud and that tumbling class? Ya too dangerous. That mommy play group? too loud for Taylor. I threw myself into learning speech therapy skills and how to be a physical therapist and occupational therapist all before I finished my own bachelor's degree. When Taylor started going to day care so I could work, it was not long before I had to pull her out due to behaviors. I saw the stares from the "normal" mothers. It was almost as if they say look at that mother, she doesn't understand the first thing about parenting. Taylor is challenging, she is like a puzzle missing all the right pieces. I have been blessed to meet friends along the way that provide me with encouragement and helpful advice that I do not take as judging. They truly have Taylor's interest at heart and not once have I felt like they have made me feel like a horrible mother.
When Taylor started Pre-KD last year, I admit I had my fears - what will the mom's think of Taylor. Heck what will the teacher's think of my parenting? What I discovered shocked me. This team behind Taylor didn't see my parenting as a mistake, they saw a mother that had tried everything and didn't give up. Now I may not fight doctors for a diagnosis. I just am not that type of Mother - to those Mother's bless you - I admire your ability to juggle everything and still argue with a doctor. I had and have placed all my energy and time in focusing on making Taylor successful. That is just what it is. Taylor has learned so much by allowing me to focus on this. Meal time? Its not a knock down drag out any more. Potty training? Its going.
When I see a child crying in the middle of wal mart or the commissary I do not think oh what the hell is that parent doing? I think oh that poor parent, how embarrassing. The fact of the matter is kids will be kids - I have seen typical kids throw fits far greater than Taylor's. The answer to this is not to "beat the child" as I have seen this week in several cases... the answer is to redirect the child - I have found that when we are going to be going to the grocery store or any store - I bring a long the iPad and iPod and allow my children to play games. I also bring snacks - Lots of them. I get it Mom's who child is screaming like a monster in the middle of the aisle while trying to choose cereal... I get it mom whose kid is crying hysterically in the middle of the department store. I get it. I get it. I get it. I do not think a child that hits will learn anything my hitting him in response to his behavior. They are only going to see well Mommy/Daddy hits when they get upset that is what I am going to do as well. While I think it is important for the parents to teach their children. I do not always believe spanking is the answer. I get it southern people, I get it. You and I both grew up getting spanked. We turned out fine. Heck I spank my own children when they do something bad enough to deserve it. But I do not beat them to the point of no return, which has actually been suggested by a fellow mother to me on several occasions ( we are no longer friends).
Taylor has taught me tolerance and acceptance. I wish that every mom had a kid that taught them these valuable lessons. Sadly these are the parents whose kids will grow up with the same mentality.
Taylor is amazing - she is smart, she may melt down over not being able to find a book or because that particular day it is easier to cry than use her voice to tell me what she needs. The point of this whole post is not just about learning tolerance and acceptance it is about realizing that Taylor is my daughter - your comments and stares can stay to yourself.
When I found out I was pregnant with Taylor - my life changed. I instantly had dreams, dreams of her being in every preschool/toddler class I could find for her - Music class, Open Gym, play dates, Mommy and Me tumbling... you name it I thought of it. When she was born at 31 weeks and I saw my daughter for the first time, these dreams changed to just praying she would live. I was raised with the morals of tolerance and acceptance. My parents allowed me to work with special needs kids and they were proud of me for doing it, they also allowed me to take sign language instead of Spanish, knowing that Spanish in this country would get me further - but learning sign language and about the deaf community I learned so much more than another language. I learned acceptance and tolerance far greater than my parents ever taught me.
When Taylor was born super early and missed important milestones in her development, I knew that God has blessed me with the gifts of acceptance and tolerance. At the age of 14 months old, Taylor started therapies. I was thrown into a world that I never dreamed of. But one foot in front of the other, I realized that the toddler music class was probably to loud and that tumbling class? Ya too dangerous. That mommy play group? too loud for Taylor. I threw myself into learning speech therapy skills and how to be a physical therapist and occupational therapist all before I finished my own bachelor's degree. When Taylor started going to day care so I could work, it was not long before I had to pull her out due to behaviors. I saw the stares from the "normal" mothers. It was almost as if they say look at that mother, she doesn't understand the first thing about parenting. Taylor is challenging, she is like a puzzle missing all the right pieces. I have been blessed to meet friends along the way that provide me with encouragement and helpful advice that I do not take as judging. They truly have Taylor's interest at heart and not once have I felt like they have made me feel like a horrible mother.
When Taylor started Pre-KD last year, I admit I had my fears - what will the mom's think of Taylor. Heck what will the teacher's think of my parenting? What I discovered shocked me. This team behind Taylor didn't see my parenting as a mistake, they saw a mother that had tried everything and didn't give up. Now I may not fight doctors for a diagnosis. I just am not that type of Mother - to those Mother's bless you - I admire your ability to juggle everything and still argue with a doctor. I had and have placed all my energy and time in focusing on making Taylor successful. That is just what it is. Taylor has learned so much by allowing me to focus on this. Meal time? Its not a knock down drag out any more. Potty training? Its going.
When I see a child crying in the middle of wal mart or the commissary I do not think oh what the hell is that parent doing? I think oh that poor parent, how embarrassing. The fact of the matter is kids will be kids - I have seen typical kids throw fits far greater than Taylor's. The answer to this is not to "beat the child" as I have seen this week in several cases... the answer is to redirect the child - I have found that when we are going to be going to the grocery store or any store - I bring a long the iPad and iPod and allow my children to play games. I also bring snacks - Lots of them. I get it Mom's who child is screaming like a monster in the middle of the aisle while trying to choose cereal... I get it mom whose kid is crying hysterically in the middle of the department store. I get it. I get it. I get it. I do not think a child that hits will learn anything my hitting him in response to his behavior. They are only going to see well Mommy/Daddy hits when they get upset that is what I am going to do as well. While I think it is important for the parents to teach their children. I do not always believe spanking is the answer. I get it southern people, I get it. You and I both grew up getting spanked. We turned out fine. Heck I spank my own children when they do something bad enough to deserve it. But I do not beat them to the point of no return, which has actually been suggested by a fellow mother to me on several occasions ( we are no longer friends).
Taylor has taught me tolerance and acceptance. I wish that every mom had a kid that taught them these valuable lessons. Sadly these are the parents whose kids will grow up with the same mentality.
Taylor is amazing - she is smart, she may melt down over not being able to find a book or because that particular day it is easier to cry than use her voice to tell me what she needs. The point of this whole post is not just about learning tolerance and acceptance it is about realizing that Taylor is my daughter - your comments and stares can stay to yourself.
Friday, July 12, 2013
Princess Eyes, gibberish, & a new perspective
As many of you know, Taylor had eye muscle surgery a couple weeks ago. I am pleased to say that this eye surgery has surpassed what I ever dreamed it could do... Her vision although she will still need glasses has made leaps and bounds since birth - For the first time tomorrow, I will fill a prescription for glasses, that is lower than the original prescription that she received at the age of 1. We are forever thankful as a family, to Dr. Cogen and his staff at UAB - Callahan Eye Hospital in Birmingham, AL.
With the surgery came the last two weeks of what I would describe as a rollercoaster of events... From overheating to fevers to throwing up all the way to fainting. I thought we had seen it all, till I noticed that Taylor had begun to stutter again... something that we had not seen in a few months. With the stuttering came back what we have dubbed as Taylor's secret language... Some days I can hear Taylor clear as day and understand her - just yesterday she told her Occupational Therapist, that Princesses do not go to space. But as we go further and further away from the surgery ( whether it is related or not) she has definitely regressed back to Taylor's world... I can only pray that with intense work at home and in therapies we bring her back to where she was.
With all of this Nick and myself have gained a new perspective, not only for our family but for our relationship as well. There are times when I have cried about everything going on with Taylor or I meet another Mito mom and see similarities or they see the similarities and point them out before I have a chance to speak...I have spent many nights sitting in bed crying and praying that we find answers soon. Here is to waiting on doctors and continuing to fight for Taylor. <3
With the surgery came the last two weeks of what I would describe as a rollercoaster of events... From overheating to fevers to throwing up all the way to fainting. I thought we had seen it all, till I noticed that Taylor had begun to stutter again... something that we had not seen in a few months. With the stuttering came back what we have dubbed as Taylor's secret language... Some days I can hear Taylor clear as day and understand her - just yesterday she told her Occupational Therapist, that Princesses do not go to space. But as we go further and further away from the surgery ( whether it is related or not) she has definitely regressed back to Taylor's world... I can only pray that with intense work at home and in therapies we bring her back to where she was.
With all of this Nick and myself have gained a new perspective, not only for our family but for our relationship as well. There are times when I have cried about everything going on with Taylor or I meet another Mito mom and see similarities or they see the similarities and point them out before I have a chance to speak...I have spent many nights sitting in bed crying and praying that we find answers soon. Here is to waiting on doctors and continuing to fight for Taylor. <3
Tuesday, April 9, 2013
A reflection on the last 3 years...
I was met with a challenge from a "online friend" who has been a great source of strength since I gave birth to Taylor, 3 years ago... She challenged me to sit down and type out the frustrations and the triumphs of the last three years... With a simple agreement that when I was done I would see that there are far more triumphs then challenges. So thank you March of Dimes for making me realize that Taylor's story matters and thank you to everyone who has been there the last three years.
So here we go -
Triumph #1 Taylor was released from the NICU just two months after she was born!
Challenge #1 Taylor was in the NICU and had a scary stay, that even though I remember it I am able to focus on the triumph of this!
Triumph #2 Taylor mastered physical therapy and walked before she turned 2!
Challenge #2 Carrying Taylor because she couldn't walk while 6 months pregnant was a challenge!
Triumph #3 Taylor learned how to speak and boy did she take off!
Challenge #3 Taylor hits pits of regression, still where she chooses to not speak to anyone or anything.
Triumph #4 Taylor successfully learned how to go down a slide, without screaming!
No challenge here!
Triumph #5 Taylor started putting phrases together about the age of 35 months and has mastered making three word sentences and sometimes she likes to surprise us and say more at once :) Like, " daddy I wet my bed, so you have to put my sheets in the washing machine" :)
No challenge!
Triumph #6 Taylor turned three!!!!!!!! The neonatologist in the NICU was a mean mean man, he informed us when Taylor was only 48 hours old that if she lived to see outside the NICU that she would most likely not make it to her third birthday! Well, guess what? We made it and we are making it past her 4th birthday!
Triumph #7 Taylor started school, a day I thought we would never see - I still get teary eyed when I say, its a school night. She truly has amazed us and taken off - completely potty trained at school and listens well.
I think with every kids life there are challenges, but with our life and with Taylor it is easy to get overwhelmed in the day to day therapies and challenges, but to see the positives in our life helps a ton!
So I leave you with this video It truly says everything that I want to say!
http://www.youtube.com/watch?v=COuQ8y2Adns
Also please be patient with me for the next couple of weeks - I am focusing on my family - Family is the greatest thing you ever get given. So embrace it and love them! <3
So here we go -
Triumph #1 Taylor was released from the NICU just two months after she was born!
Challenge #1 Taylor was in the NICU and had a scary stay, that even though I remember it I am able to focus on the triumph of this!
Triumph #2 Taylor mastered physical therapy and walked before she turned 2!
Challenge #2 Carrying Taylor because she couldn't walk while 6 months pregnant was a challenge!
Triumph #3 Taylor learned how to speak and boy did she take off!
Challenge #3 Taylor hits pits of regression, still where she chooses to not speak to anyone or anything.
Triumph #4 Taylor successfully learned how to go down a slide, without screaming!
No challenge here!
Triumph #5 Taylor started putting phrases together about the age of 35 months and has mastered making three word sentences and sometimes she likes to surprise us and say more at once :) Like, " daddy I wet my bed, so you have to put my sheets in the washing machine" :)
No challenge!
Triumph #6 Taylor turned three!!!!!!!! The neonatologist in the NICU was a mean mean man, he informed us when Taylor was only 48 hours old that if she lived to see outside the NICU that she would most likely not make it to her third birthday! Well, guess what? We made it and we are making it past her 4th birthday!
Triumph #7 Taylor started school, a day I thought we would never see - I still get teary eyed when I say, its a school night. She truly has amazed us and taken off - completely potty trained at school and listens well.
I think with every kids life there are challenges, but with our life and with Taylor it is easy to get overwhelmed in the day to day therapies and challenges, but to see the positives in our life helps a ton!
So I leave you with this video It truly says everything that I want to say!
http://www.youtube.com/watch?v=COuQ8y2Adns
Also please be patient with me for the next couple of weeks - I am focusing on my family - Family is the greatest thing you ever get given. So embrace it and love them! <3
Sunday, December 9, 2012
Set backs, Bifocals,& ABA
A lot has been happening in Taylor's corner - So much so that this mommy has been taken over once again by therapies.
Lets start with Set Back's - Taylor out of no where started stuttering extremely bad. About every two phrases she starts by stuttering. This means all of her goals and work in speech has to take a back seat as we focus on this new problem, as to hope to correct it before she is older. As her mother I should have seen this coming, she was doing so well, her brain was bound to need a catch up period at some point... Its a learning process for us, I am very thankful that we have Nick home for now to help with this set back.
Taylor recently got her new glasses - Bifocals :) She is adorable with them on! She is doing amazing with them, her next appointment is in January and we will see if they are actually working or not.
ABA - we recently took on another two therapies one is social group which is a half hour of social interaction facilitated by Taylor's speech therapist. She is doing amazing and has really made a good friend in the little boy that she plays with! I have also made a new friend who knows just how crazy this life is. Taylor also started with this same little boy peer ABA therapy - ( autism behavioral analysis) she is having a blast playing with her friend and does not even realize that she is in therapy!
This is it for now - Thank you all for being patient as I update the blog :)
Lets start with Set Back's - Taylor out of no where started stuttering extremely bad. About every two phrases she starts by stuttering. This means all of her goals and work in speech has to take a back seat as we focus on this new problem, as to hope to correct it before she is older. As her mother I should have seen this coming, she was doing so well, her brain was bound to need a catch up period at some point... Its a learning process for us, I am very thankful that we have Nick home for now to help with this set back.
Taylor recently got her new glasses - Bifocals :) She is adorable with them on! She is doing amazing with them, her next appointment is in January and we will see if they are actually working or not.
ABA - we recently took on another two therapies one is social group which is a half hour of social interaction facilitated by Taylor's speech therapist. She is doing amazing and has really made a good friend in the little boy that she plays with! I have also made a new friend who knows just how crazy this life is. Taylor also started with this same little boy peer ABA therapy - ( autism behavioral analysis) she is having a blast playing with her friend and does not even realize that she is in therapy!
This is it for now - Thank you all for being patient as I update the blog :)
Tuesday, October 2, 2012
Bedtime routine.
So lately, Taylor has been insisting that only her daddy can put her to bed - which is fine and all, but Nick is on swings which means he gets home long after she has hopefully been asleep.
Well this does not fly with Tay, instead we have screaming matches and arguments and door slamming... I swear its like living with a teenager. But nonetheless I find myself sitting outside her door bawling like a baby - because no one believes me... She does not do it when Nick is home, she does not do it for anyone else - BUT me... What the heck did I do to deserve this?! Geez...
Praying we end this little game soon... Really miss my sweet cuddly Tay.
Well this does not fly with Tay, instead we have screaming matches and arguments and door slamming... I swear its like living with a teenager. But nonetheless I find myself sitting outside her door bawling like a baby - because no one believes me... She does not do it when Nick is home, she does not do it for anyone else - BUT me... What the heck did I do to deserve this?! Geez...
Praying we end this little game soon... Really miss my sweet cuddly Tay.
Saturday, September 1, 2012
Catch up ...
So this will be a massive catch up and then I will try and be better about updating as much as possible!
Lets see -
Taylor is still in speech and OT - We go twice a week for a total of 4 hours...
Speech - I AM PROUD TO SAY - Taylor is caught up :) We will still attend speech, because Taylor still needs help coming out of her shell and expressing herself. A HUGE thank you to Mary Beth who has stood by Taylor and helped her overcome a lot in such a short amount of time. :)
OT - Taylor is doing great with fine motor activities, still working on her attention and getting her to focus for longer periods of time. :)
Taylor has been challenging this last week - She has had some of her extreme behaviors and I can only wonder if all of this is the "calm" before the storm. None the less, even though I joke about sending her away to boarding school... we love her and I am thankful she keeps our lives full of surprise :)
There ya go Mass overload but I will try and get on here and write a post regarding some issues we are having tomorrow :)
have a great night!
Lets see -
Taylor is still in speech and OT - We go twice a week for a total of 4 hours...
Speech - I AM PROUD TO SAY - Taylor is caught up :) We will still attend speech, because Taylor still needs help coming out of her shell and expressing herself. A HUGE thank you to Mary Beth who has stood by Taylor and helped her overcome a lot in such a short amount of time. :)
OT - Taylor is doing great with fine motor activities, still working on her attention and getting her to focus for longer periods of time. :)
Taylor has been challenging this last week - She has had some of her extreme behaviors and I can only wonder if all of this is the "calm" before the storm. None the less, even though I joke about sending her away to boarding school... we love her and I am thankful she keeps our lives full of surprise :)
There ya go Mass overload but I will try and get on here and write a post regarding some issues we are having tomorrow :)
have a great night!
Subscribe to:
Posts (Atom)