Often times trying to get away for a night of fun activities is so difficult to do. Tonight I found a way to have a girl night out. There was a local church here in town hosting a concert by Meredith Andrews. I have been hearing some of her songs on the radio lately and loving them as I have really related to some of the words. When I heard she was coming to town I had to go. This was the first concert for Tristin and Camille both and I am happy to say they both left there with a CD signed by Meredith and they loved the concert.
Music is such a struggle here at the house lately. Tristin is 13 and wants to listen to all the Top 40 Music. I "the mean mean mommy" do not approve of alot of the songs and make her turn it off. I have been trying to get her interested in more Christian artist and I'm hoping tonight was a good step in the right direction.
When she first watch Meredith Andrews on YouTube to decide if she wanted to go see her she said "Mom, she's so pretty" to which I replied "Do you think you can't be pretty and a Christan?". That made both of us giggle but it opened up a great conversation between the two of us.
I feel so caught up in just tending to the twins these days. Their many therapies, feeding them, bathing them, keeping them entertained, that I feel like I'm losing precious time with Tristin right now. As soon as she turned 13 the teenager attitude kicked in. That VERY same day!!! Anytime I can bond with her is a good time. I enjoyed both of my girls tonight. I pray that something may have been said or done tonight to open their hearts more to following the Lord in their days to come. The older they get, the more nervous this mama gets to let them go off and make all their decisions without me. Its scary in one aspect, but exciting in another knowing that I have faith that they have a very bright future ahead of them.
Thanks Girls!!! Luv Ya XOXOX
Thursday, October 28, 2010
Wednesday, October 27, 2010
Tuesday, October 26, 2010
31 for 21: Trying to make a difference
When my boys were both born with Down Syndrome it kind of gave me a kick in the butt to share my story with everyone and to really learn what it means to advocate for my kids. Because of this I actually bumped into an opportunity a year and a half ago to become the Executive Director of The Arc of Jefferson County. I was looking to start a support group for parents who had children with Down Syndrome. I called someone from The Arc and she said "Now why would you want to limit it to just Down Syndrome, as parents of children with special needs we all go through alot of the same things." That really struck me. I gave it a thought for a day or two and I couldn't come up with any arguments as to why I would want to limit myself for a support group. We truly do attend more doctors visits, get our children involved with Early Intervention, introduce them to the world of therapies, stress over things we wouldn't if we had healthy children, worry about the future, learn more acronyms than we would have EVER cared to have known in a lifetime in about two years time, and most of all... we seek out those that have been there-done that and hope they can offer encouragement and support.
I accepted the position of Executive Director and have not looked back. I am training to be a parent advocate. To learn the Right and Regulations of parents within the school districts. I am wrapping my brain around the many many support services there are out there and trying to make note of anything that I think I need to know to offer to someone else. I am learning more and more about The Arc and their role as being a leading advocacy group in the United States. I am loving the fact that just by stepping into this position by accident I have a facility already established that I can bring trainings into, hold picnics and playgroups, and help this organization grow. I don't know just how yet, but the possibilities are there, I'm excited about them, and with God's hand it in I pray that people WILL someday know who The Arc is and what they do. I'm still learning myself, but I am happy to be a part of them.
I have just recently also joined forces with The Mentor Parent Program, Inc. I am totally excited about learning about them too. Things are going well. I do need to take a breath and make sure that I am not letting my 5 kids childhood slip away from me because I am being to busy with other things. One mindset, is that I am doing this to improve the lives of our boys.. And the other is being fearful that I won't matter as much in the lives of others like I do in my childrens eyes.. Its a struggle right now, but one that I keep plugging away at until I figure out a schedule that will work for everyone.
I am totally EXCITED that Tom and I are heading to Orlando, Florida to Walt Disney Resort a week from tomorrow to attend one day of The Arc's National Convention so that we can both learn together more about The Arc and grow together in knowledge.
And to think................if I did not have children with Down Syndrome, I would not be a part of these two amazing organizations now would I??
I accepted the position of Executive Director and have not looked back. I am training to be a parent advocate. To learn the Right and Regulations of parents within the school districts. I am wrapping my brain around the many many support services there are out there and trying to make note of anything that I think I need to know to offer to someone else. I am learning more and more about The Arc and their role as being a leading advocacy group in the United States. I am loving the fact that just by stepping into this position by accident I have a facility already established that I can bring trainings into, hold picnics and playgroups, and help this organization grow. I don't know just how yet, but the possibilities are there, I'm excited about them, and with God's hand it in I pray that people WILL someday know who The Arc is and what they do. I'm still learning myself, but I am happy to be a part of them.
I have just recently also joined forces with The Mentor Parent Program, Inc. I am totally excited about learning about them too. Things are going well. I do need to take a breath and make sure that I am not letting my 5 kids childhood slip away from me because I am being to busy with other things. One mindset, is that I am doing this to improve the lives of our boys.. And the other is being fearful that I won't matter as much in the lives of others like I do in my childrens eyes.. Its a struggle right now, but one that I keep plugging away at until I figure out a schedule that will work for everyone.
I am totally EXCITED that Tom and I are heading to Orlando, Florida to Walt Disney Resort a week from tomorrow to attend one day of The Arc's National Convention so that we can both learn together more about The Arc and grow together in knowledge.
And to think................if I did not have children with Down Syndrome, I would not be a part of these two amazing organizations now would I??
Monday, October 25, 2010
31 for 21: A story from a sibling who has a brother with Down Syndrome
I had to share this article today, its from a local girl, Natalie Bonavita Spencer, whom I've never met before. She grew up here in DuBois yet I have never had the honor of meeting with her. I met her online ironically a few years back. This was posted on her facebook today and she said I was allow to repost on my blog. Her story appears in a book I truly want and need to get soon called Gifts 2 and she is featured on page 77.
In September of 2008, I submitted a story two nights before the deadline. The story was about Greg and I and was for the book Gifts 2: How People with Down Syndrome Enrich the World, edited by Kathryn Lynard Soper. I had Matt and my friend, Adirenne, edit the story via e-mail and submitted my story for hopeful selection into the book. Not too long after, I learned that my story would be included in the book and started the editing process. Just over a year later, Gifts 2 was published, right around Greg's birthday in October 2009. This book, along with the first Gifts book, provide first hand accounts of what it's like to live with someone with Down syndrome, from parents to siblings to educators to friends. Below is the story I wrote for Gifts 2.
******************************************************
Subtle Wisdom
By Natalie Bonavita Spencer
I have never known life without Down syndrome. From the day I was born, it was everywhere. When I wanted to play with toys, Down syndrome was there. When I wanted the attention of one of my older siblings, Down syndrome was there. When I went to school, to the baby sitter’s, to the mall, to Grandma’s, Down syndrome was there. But I never saw it.
Gregory Joseph was born in October of 1977; I was born three-and-a-half years later, the sixth and last child to join our family. Throughout my teen and young adult years, each member of the family has told me how they reacted to Greg’s birth and diagnosis of Down syndrome. My mother was able to fully accept Greg within the first few weeks following his birth, while my father admits it took him six months to see beyond the Down syndrome and finally “see” Greg. My four older siblings, who were between the ages of eight and twelve, each reported an adjustment period. I, however, can’t remember when I first realized Greg had Down syndrome. He was always just Greg.
What I do remember is having a brother who would play Barbie’s with me and watch the movie Annie with me over and over, singing along with all the songs. I was the member of my family best able to understand Greg’s “language” and would often interpret what he said for the rest of my family. He may have looked and sounded different to the outside world, but not to me. His tongue sliding out of his mouth when he was concentrating or tired; the “W” position he sat in, with each leg bent at the knees and each foot touching its corresponding hip bone; his full-body laugh, which prevented all sound from escaping and left only a big smile and a shaking body—these were all parts of Greg, not the Down syndrome. I saw him no differently than I saw my older siblings, or how they, in return, saw me.
As I entered my teen years, Greg and I were the only kids at home, as my older siblings had all married and started their own families. I found myself realizing that I didn’t have a typical teen sibling relationship with Greg. I never had to fight for the car, as Greg does not drive. I never had to fight to watch what I wanted on TV, as we both had our own TVs in our bedrooms. I never had to fight for the phone, or the living room when friends were over. There were times I wondered what it would be like to have a “typical” sibling close to my age, but this was my life, and it was okay. Granted, we had our share of times where we bickered, as only siblings can – like over who would get the last Oreo cookie. During these times, Greg would get mad and storm out of the room, only to come back a half hour later with the most somber look on his face, sighing deeply, and saying “No happy. Sorry.” Greg made it easier to let go of some of the teen angst that we all experience. He taught me that it is possible for someone to give a genuine and heartfelt apology, then move on – a lesson I’m still trying to apply today.
Greg also taught me that it is more than okay to accept someone despite how he or she may look or sound. It’s easy to judge a book by its cover, but those who do so may miss out on seeing the person beyond the difference or disability. In our home, we get to enjoy Greg’s tradition of calling our father every April 1st, tell him to look at the snow outside, and yelling “APRIL FOOL’S!!” while giggling. We’re aware of things we normally wouldn’t be interested in, such as WWE wrestling and Power Rangers. We watch Greg get up each morning and independently get himself ready for work, from showering, to dressing, to shaving and packing his own lunch, and finally getting himself on the bus, all the while talking to himself and planning out his entire day for all to hear. We understand that he can find his favorite show on TV at any given moment, despite not being able to tell time. We realize his abilities far outweigh his disabilities.
Now, as an adult early in my career as a speech-language pathologist – a career I wouldn’t have known about or considered without Greg – I appreciate the subtle ways Greg has affected my life. He has shown me how to fully accept people for who they are – something he does very easily. He has taught me that there are many different ways to view a situation and to express yourself. Without me realizing it on a conscious level, Greg has influenced how I view my students, many of whom come to me with limited speech and language skills due to a diagnosis of Down syndrome, autism, or overall developmental delay. I know these children each have many abilities that are known to their parents, siblings, grandparents, and extended family members who love them.
Greg has taught me by example that if you can’t make yourself understood the first way you try, you try another method. This has helped me to help Robbie, who is nonverbal, my height, has the strength of ten of me when he becomes upset, and has autism. Robbie enjoys books and puzzles, and can turn on and navigate through a computer better than most adults I know. He can run faster than I can down the hall and has a great smile. He is an intelligent boy who is learning how to express himself nonverbally. However, he becomes incredibly frustrated and sometimes aggressive when his wants and needs are not met on his timeline. Greg’s speech is fairly unintelligible to the unfamiliar listener, and like Robbie, Greg becomes frustrated when he is not understood after a few tries and will occasionally give up. But more often than not, Greg will take a few seconds and will figure out another way to express what he was trying to say. Through Greg’s living example, I am aware that although Robbie may not be able to tell me what wants using clear, precise words, that doesn’t mean he can’t tell me another way, either using sign language, pictures, or by taking my hand and showing me. When Robbie does this, I see his frustration level decrease, just as I do with Greg when his thought is understood and he looks at us all as if he is thinking, “what was so hard about that to understand?”
Because Greg can’t always tell us what he’s thinking or feeling, some may think he does not understand some of the world around him. My understanding that this isn’t the case has enabled me to help Kiara, who like Robbie is nonverbal. When I first started working with Kiara two years ago, she was very difficult to engage, barely looking at me when I encouraged her to sign “more” or wave “hi.” Kiara was very lax in all areas, physically and cognitively. Then, halfway through my second year working with her, something started clicking. Kiara started establishing eye contact more frequently, interacting with adults on her own for brief periods, identifying vocabulary, and initiating requests for objects she wants by pointing or gazing. She began to imitate some sounds and vocalized more audibly. She would become upset if she couldn’t write her own name. She also showed us she was very interested in how things work: she would make sure a zipper is zipped up fully, and tried to take apart toys if possible. She also had a knowing smile when she is doing something she knows she isn’t supposed to do. Because of Greg, I know that just because Kiara can’t verbally express herself doesn’t mean she’s incapable of understanding when someone’s feelings are hurt, or when someone is mad or sad. Kiara, Robbie, and Greg understand much more than you might think at first glance – just give them time to show you in their own way.
The subtle wisdom Greg has shared with me is truly significant. It has affected not only my life, but the lives of others. Because I grew up learning from Greg and realizing he is much more capable than not, I look for what my students and others in my life can do. I am willing to give my people the benefit of the doubt more readily because of him. I am grateful that my life has always included Greg as my brother, who has taught me so much and influenced my life in so many wonderful and positive ways – some of which I’m just beginning to understand.
********************************************
Natalie lives in Pennsylvania with her husband, Matt. She enjoys her work as a speech-language pathologist. Her brother, Greg, lives in Pennsylvania with his mother and works five days a week. He is planning to move into a group home as soon as possible, and will expect a phone call before visits.
In September of 2008, I submitted a story two nights before the deadline. The story was about Greg and I and was for the book Gifts 2: How People with Down Syndrome Enrich the World, edited by Kathryn Lynard Soper. I had Matt and my friend, Adirenne, edit the story via e-mail and submitted my story for hopeful selection into the book. Not too long after, I learned that my story would be included in the book and started the editing process. Just over a year later, Gifts 2 was published, right around Greg's birthday in October 2009. This book, along with the first Gifts book, provide first hand accounts of what it's like to live with someone with Down syndrome, from parents to siblings to educators to friends. Below is the story I wrote for Gifts 2.
******************************************************
Subtle Wisdom
By Natalie Bonavita Spencer
I have never known life without Down syndrome. From the day I was born, it was everywhere. When I wanted to play with toys, Down syndrome was there. When I wanted the attention of one of my older siblings, Down syndrome was there. When I went to school, to the baby sitter’s, to the mall, to Grandma’s, Down syndrome was there. But I never saw it.
Gregory Joseph was born in October of 1977; I was born three-and-a-half years later, the sixth and last child to join our family. Throughout my teen and young adult years, each member of the family has told me how they reacted to Greg’s birth and diagnosis of Down syndrome. My mother was able to fully accept Greg within the first few weeks following his birth, while my father admits it took him six months to see beyond the Down syndrome and finally “see” Greg. My four older siblings, who were between the ages of eight and twelve, each reported an adjustment period. I, however, can’t remember when I first realized Greg had Down syndrome. He was always just Greg.
What I do remember is having a brother who would play Barbie’s with me and watch the movie Annie with me over and over, singing along with all the songs. I was the member of my family best able to understand Greg’s “language” and would often interpret what he said for the rest of my family. He may have looked and sounded different to the outside world, but not to me. His tongue sliding out of his mouth when he was concentrating or tired; the “W” position he sat in, with each leg bent at the knees and each foot touching its corresponding hip bone; his full-body laugh, which prevented all sound from escaping and left only a big smile and a shaking body—these were all parts of Greg, not the Down syndrome. I saw him no differently than I saw my older siblings, or how they, in return, saw me.
As I entered my teen years, Greg and I were the only kids at home, as my older siblings had all married and started their own families. I found myself realizing that I didn’t have a typical teen sibling relationship with Greg. I never had to fight for the car, as Greg does not drive. I never had to fight to watch what I wanted on TV, as we both had our own TVs in our bedrooms. I never had to fight for the phone, or the living room when friends were over. There were times I wondered what it would be like to have a “typical” sibling close to my age, but this was my life, and it was okay. Granted, we had our share of times where we bickered, as only siblings can – like over who would get the last Oreo cookie. During these times, Greg would get mad and storm out of the room, only to come back a half hour later with the most somber look on his face, sighing deeply, and saying “No happy. Sorry.” Greg made it easier to let go of some of the teen angst that we all experience. He taught me that it is possible for someone to give a genuine and heartfelt apology, then move on – a lesson I’m still trying to apply today.
Greg also taught me that it is more than okay to accept someone despite how he or she may look or sound. It’s easy to judge a book by its cover, but those who do so may miss out on seeing the person beyond the difference or disability. In our home, we get to enjoy Greg’s tradition of calling our father every April 1st, tell him to look at the snow outside, and yelling “APRIL FOOL’S!!” while giggling. We’re aware of things we normally wouldn’t be interested in, such as WWE wrestling and Power Rangers. We watch Greg get up each morning and independently get himself ready for work, from showering, to dressing, to shaving and packing his own lunch, and finally getting himself on the bus, all the while talking to himself and planning out his entire day for all to hear. We understand that he can find his favorite show on TV at any given moment, despite not being able to tell time. We realize his abilities far outweigh his disabilities.
Now, as an adult early in my career as a speech-language pathologist – a career I wouldn’t have known about or considered without Greg – I appreciate the subtle ways Greg has affected my life. He has shown me how to fully accept people for who they are – something he does very easily. He has taught me that there are many different ways to view a situation and to express yourself. Without me realizing it on a conscious level, Greg has influenced how I view my students, many of whom come to me with limited speech and language skills due to a diagnosis of Down syndrome, autism, or overall developmental delay. I know these children each have many abilities that are known to their parents, siblings, grandparents, and extended family members who love them.
Greg has taught me by example that if you can’t make yourself understood the first way you try, you try another method. This has helped me to help Robbie, who is nonverbal, my height, has the strength of ten of me when he becomes upset, and has autism. Robbie enjoys books and puzzles, and can turn on and navigate through a computer better than most adults I know. He can run faster than I can down the hall and has a great smile. He is an intelligent boy who is learning how to express himself nonverbally. However, he becomes incredibly frustrated and sometimes aggressive when his wants and needs are not met on his timeline. Greg’s speech is fairly unintelligible to the unfamiliar listener, and like Robbie, Greg becomes frustrated when he is not understood after a few tries and will occasionally give up. But more often than not, Greg will take a few seconds and will figure out another way to express what he was trying to say. Through Greg’s living example, I am aware that although Robbie may not be able to tell me what wants using clear, precise words, that doesn’t mean he can’t tell me another way, either using sign language, pictures, or by taking my hand and showing me. When Robbie does this, I see his frustration level decrease, just as I do with Greg when his thought is understood and he looks at us all as if he is thinking, “what was so hard about that to understand?”
Because Greg can’t always tell us what he’s thinking or feeling, some may think he does not understand some of the world around him. My understanding that this isn’t the case has enabled me to help Kiara, who like Robbie is nonverbal. When I first started working with Kiara two years ago, she was very difficult to engage, barely looking at me when I encouraged her to sign “more” or wave “hi.” Kiara was very lax in all areas, physically and cognitively. Then, halfway through my second year working with her, something started clicking. Kiara started establishing eye contact more frequently, interacting with adults on her own for brief periods, identifying vocabulary, and initiating requests for objects she wants by pointing or gazing. She began to imitate some sounds and vocalized more audibly. She would become upset if she couldn’t write her own name. She also showed us she was very interested in how things work: she would make sure a zipper is zipped up fully, and tried to take apart toys if possible. She also had a knowing smile when she is doing something she knows she isn’t supposed to do. Because of Greg, I know that just because Kiara can’t verbally express herself doesn’t mean she’s incapable of understanding when someone’s feelings are hurt, or when someone is mad or sad. Kiara, Robbie, and Greg understand much more than you might think at first glance – just give them time to show you in their own way.
The subtle wisdom Greg has shared with me is truly significant. It has affected not only my life, but the lives of others. Because I grew up learning from Greg and realizing he is much more capable than not, I look for what my students and others in my life can do. I am willing to give my people the benefit of the doubt more readily because of him. I am grateful that my life has always included Greg as my brother, who has taught me so much and influenced my life in so many wonderful and positive ways – some of which I’m just beginning to understand.
********************************************
Natalie lives in Pennsylvania with her husband, Matt. She enjoys her work as a speech-language pathologist. Her brother, Greg, lives in Pennsylvania with his mother and works five days a week. He is planning to move into a group home as soon as possible, and will expect a phone call before visits.
Greg's birthday 2008
Christmas 1982
Saturday, October 23, 2010
31 for 21: A mom's job is never done
My days lately have been beyond full and busy.. I would love that have someone smack me upside the head and ask me what was I thinking tearing up the kids bathroom to completely... "completely" remodel it. Everything but the plumbing is being replaced and renewed. I started more than two weeks ago and today my guess is that I still have about a week or so to go to finish everything up. Its not that there is that much work left, its that my daily schedule is so busy that it leaves me no time to work on the bathroom.
I seriously have a 13 year old threatening to move out if I do not get her bathroom back in order. WOW imagine only having one bathroom for the whole family LIKE I DID GROWING UP :)
Today I made progress. Ceiling cleaned and then painted. All the walls primered and wall paper hung on more than half of the walls. I feel good about today but nervous that my next job will be tearing up the floor and laying down another one myself. I smile at myself often thinking that its good sometimes to have spunk like I tend to have. If I want something done, I getter done!!
This also pertains to being a mom to 2 children with special needs and 3 others with typical everyday needs. I don't know how I get everything done that I do. I could absolutely use a clone of myself to try to double my output, but everyone is happy, healthy, and getting all of their basic needs met. We do not do extra things like go out to eat often, goto the movies, or for that matter even hit the mall very much. With a teenager and a 9 year old girly girl... that is not met with alot of complaining.
My Down Syndrome Awareness tip of the day is this: "Raising a child with special needs does take more time and often requires more doctors visits, therapies, and schooling, but I know that taking the time with them now will only provide us all with a brighter future. They are learning independence, social skills, and they are learning that I will offer them everything I have as long as they are happy and gaining new skills. As far as my other children. I pray that they know that they are worth just as much time and effort, but since I don't have any extra minutes in my day, what I do give them is from the heart each and every minute."
I seriously have a 13 year old threatening to move out if I do not get her bathroom back in order. WOW imagine only having one bathroom for the whole family LIKE I DID GROWING UP :)
Today I made progress. Ceiling cleaned and then painted. All the walls primered and wall paper hung on more than half of the walls. I feel good about today but nervous that my next job will be tearing up the floor and laying down another one myself. I smile at myself often thinking that its good sometimes to have spunk like I tend to have. If I want something done, I getter done!!
This also pertains to being a mom to 2 children with special needs and 3 others with typical everyday needs. I don't know how I get everything done that I do. I could absolutely use a clone of myself to try to double my output, but everyone is happy, healthy, and getting all of their basic needs met. We do not do extra things like go out to eat often, goto the movies, or for that matter even hit the mall very much. With a teenager and a 9 year old girly girl... that is not met with alot of complaining.
My Down Syndrome Awareness tip of the day is this: "Raising a child with special needs does take more time and often requires more doctors visits, therapies, and schooling, but I know that taking the time with them now will only provide us all with a brighter future. They are learning independence, social skills, and they are learning that I will offer them everything I have as long as they are happy and gaining new skills. As far as my other children. I pray that they know that they are worth just as much time and effort, but since I don't have any extra minutes in my day, what I do give them is from the heart each and every minute."
I LOVE MY FAMILY :)
Friday, October 22, 2010
31 for 21: Pete the Purple Pumpkin
I got this today off another blog called Pocket Lint
Pete the Purple Pumpkin
By EmmaLee McDonald
(Dedicated to EmmaLee's little pumpkin Toby, who happens to have Down syndrome)
There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch. That evening, she saw all of the neighbors on her lawn. Hoping they weren’t making fun of Pete, she ran out. Then, she realized what they were all staring at. It was a light brighter than any she had ever seen, shining from within Pete, without even one candle. It was a light that shown from within. Then, people came from far and wide to see this bright, little pumpkin. Just imagine what the world would have missed if Pete were simply thrown away. Even though people may look different on the outside, true beauty comes from within.
Big thanks to EmmaLee for sharing her story with me. Great job!
(EmmaLee is twelve years old. Amazing, huh?)
Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin :).
Thursday, October 21, 2010
31 for 21: An Interview with Tristin
5 years ago Tristin was 8 years old. She was old enough to know and see the craziness that occurred when the boys were born 8 1/2 weeks prematurely, receiving a Down Syndrome diagnosis within a week and then having one twin develop a life threatening disease rather uncommon in premature babies called Necrotizing Enterocolitis (NEC) and taken 2 1/2 hours away to Pittsburgh Childrens Hospital where he would stay for 12 weeks.
It was a very stressful and unsure beginning. Here is what she remembers and some answers to other questions I wanted to ask her.
Mom: What do you remember most about when the twins were born??
Tristin: I remember seeing them under the purple lights. They were so tiny. Seeing them like this made me both happy and scared.
Mom: When we told you they both had Down Syndrome what did you want to know the most?
Tristin: I guess I wondered if they will be able to do all the stuff we do. And I wondered if it was contagious.
Mom: 5 years later, now what do you know about Down Syndrome?
Tristin: They are not that much different. They are still really cute and loveable. They shouldn't be judged by their disability because they are really smart.
Mom: Did you like to learn sign language and do you use it with them much?
Tristin: Yes and Yes. Its weird talking to other little kids younger than my brothers because I end up signing to them too. Like my one cousin Tyler who is 2, I will go up to him and ask him if he wants to eat and I'll sign eat and he looks at me funny. I think its funny!
Mom: Do you get upset with them about anything?
Tristin: Most definitely like any other little brothers. They throw things all the time and make a mess, that makes me mad. Sometimes their humming gets a tad annoying when I'm trying to watch a movie or when we're out in public.
Mom: How does it make you feel when they take up so much of my time?
Tristin: A little jealous.
Mom: When they go to school next year, how do you think they will do?
Tristin: Pretty good. I mean they can't talk yet but they know the alphabet and they are starting to read. They are smart.
Tristin: How do you feel about having twins with Down Syndrome?
Mom: I feel like we were chosen by God to raise these special needs boys. I don't know why? I find it a challenge somedays and a complete blessing others. I also think that by you having brothers with Down Syndrome you are understanding how to have compassion for people and acceptance towards those that are a little different. So not only do I feel blessed to have the twins with Down Syndrome, but I feel blessed to have you learn through everyday life that some people have harder challenges than we do, yet all they want is to be treated the same way we want to be treated. With love and respect.. and you don't know it yet, but your developing a beautiful heart that will get you wonderful things in your lifetime.
Thank you Tristin for you time. I pray that life with the boys blesses you one day and you'll appreciate all the extra work the boys go through to be more like you. They love and admire you... Keep up the great work of being a great big sister :)
It was a very stressful and unsure beginning. Here is what she remembers and some answers to other questions I wanted to ask her.
Mom: What do you remember most about when the twins were born??
Tristin: I remember seeing them under the purple lights. They were so tiny. Seeing them like this made me both happy and scared.
Mom: When we told you they both had Down Syndrome what did you want to know the most?
Tristin: I guess I wondered if they will be able to do all the stuff we do. And I wondered if it was contagious.
Mom: 5 years later, now what do you know about Down Syndrome?
Tristin: They are not that much different. They are still really cute and loveable. They shouldn't be judged by their disability because they are really smart.
Mom: Did you like to learn sign language and do you use it with them much?
Tristin: Yes and Yes. Its weird talking to other little kids younger than my brothers because I end up signing to them too. Like my one cousin Tyler who is 2, I will go up to him and ask him if he wants to eat and I'll sign eat and he looks at me funny. I think its funny!
Mom: Do you get upset with them about anything?
Tristin: Most definitely like any other little brothers. They throw things all the time and make a mess, that makes me mad. Sometimes their humming gets a tad annoying when I'm trying to watch a movie or when we're out in public.
Mom: How does it make you feel when they take up so much of my time?
Tristin: A little jealous.
Mom: When they go to school next year, how do you think they will do?
Tristin: Pretty good. I mean they can't talk yet but they know the alphabet and they are starting to read. They are smart.
Tristin: How do you feel about having twins with Down Syndrome?
Mom: I feel like we were chosen by God to raise these special needs boys. I don't know why? I find it a challenge somedays and a complete blessing others. I also think that by you having brothers with Down Syndrome you are understanding how to have compassion for people and acceptance towards those that are a little different. So not only do I feel blessed to have the twins with Down Syndrome, but I feel blessed to have you learn through everyday life that some people have harder challenges than we do, yet all they want is to be treated the same way we want to be treated. With love and respect.. and you don't know it yet, but your developing a beautiful heart that will get you wonderful things in your lifetime.
Thank you Tristin for you time. I pray that life with the boys blesses you one day and you'll appreciate all the extra work the boys go through to be more like you. They love and admire you... Keep up the great work of being a great big sister :)
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