I was born in 2003 and my family says it was a difficult situation, but does not wish to get into too many details with me so I will tell you what I know so far. I spent the first week following my birth in NICU and Akron Children's Hospital where they took exceptional care of me. Then off to home I went to be with my family.
Grandma still speaks of how tiny and fragile I was. Not sure I know what fragile means but she used that word often. I found it difficult to suck my bottle and daddy and mommy bought a lot of different nipples till they found one that worked for me. I understand I had reflux too and spent a great deal of time spitting up and had to take medication to help with this. Good news, I out grew that problem within a year or so. Now I eat everything! I love food of all kinds. Fruits, veggies, puddings, applesauce and COOKIES! My sister Tori calls me the cookie monster. Silly, sister.
From what I have been told, I was not doing much in the way of progressing the first year. Not crawling, sitting on my own and kept my body in a very stiff mode all the time. The doctors kept telling mommy and daddy that I was just delayed but nothing to fret about. All would come in time. But....my grandma did not like that excuse. She wanted more answers. Answers that simply were not coming.
So......grandma talked mommy into allowing me to go to physical therapy if she could work it out at the hospital where she works. Well as you may have already guessed, Grandma DID get it all worked out. I started going to PT shortly after my 1st birthday in 2004. That is where I met Christi and Karla, my personal trainers-therapists. They were so nice to me but they really worked me hard. Before I knew it I found out I could bend at my knees, my arms and at my waist. Funny how I did not figure that out on my own, isn't it? Boy did everyone enjoy seeing my new tricks. After my workout, Grandma always rewarded me by taking us to lunch in the hospital cafeteria. The hospital staff there were so nice. They use to come over to see me during my lunch visits. In turn I would smile and laugh with them and eat up all the comments like; "how cute she is" and "does she ever have a bad day?" I guess I must have smiled a lot? I did not know you weren't suppose to smile so much. For me it just comes natural. :-)
Well, on with my story....At the age of 2 the doctors told my parents I had a mild case of Cerebral Palsy and that was why I was not walking, talking and progressing as I should. Bethany from Help Me Grow got involved and by the time I turned 3 years of age I was off to preschool at the local school for special kids. I LOVE IT THERE! More therapies, PT, OT and Speech. And kids to play with too! I even have my own desk and classroom.
In the Spring of 2007, Dr. Manes the school administrator told my parents she thought I may have characteristics of Angelman Syndrome? Apparently she has seen a few others like me. Well, let me tell you that shook my family up, big time. Daddy called grandma and tried to tell her what he was told at my school visit but he simply could not remember more than that it was "Angel-Something" and they suggested I see the specialists at Akron Children's Hospital again. Well it took awhile to get the appointment but we did. And Daddy took me to see three doctors in one day. Of course they poked at me and took some blood, made me cry for a few minutes but I was tough. I made Daddy proud as usual.
That evening Daddy called grandma and told her that all three doctors came to the conclusion I have Clinical Angelman Syndrome, regardless of the blood test results. No one in my family had ever heard of it so my grandma started researching Angelman Syndrome on the internet. Turns out its a rare genetic disorder that I was born with. I knew I was special but wow how exciting to find out I AM AN ANGEL. Pretty cool don't you think? All this news came right after my 4th birthday. The doctors told Daddy to put away my walker, take off that silly brace and let me be me. That I would walk in my own fashion and that was just fine. Silly people, I knew I did not need that contraption but went along with the flow to keep everyone else happy.
Within 2 weeks of my walker disappearing I was off and walking all by myself. I had to let everyone wait a wee bit. Why show off all at once? I have now been walking by myself since late July, early August. (Thank goodness as my knee's were really taking a beating with all that crawling to get around). And if I must say so myself, I am becoming quite of pro with this walking gig. I can reach so many more things that I am not suppose to. Hee-Hee! I can even turn light switches on and off. Daddy loves that trick.
Grandma says my "gait" has narrowed considerably over the past few months and I am looking good. I have also been practicing using sippy cups and eating utensils. I never saw so many different cups in my life. Grandma buys a new one every few days trying to get me to use it. I tease her a bit and cooperate but gee, I really like that bedtime bottle. As for the eating tasks. Well someone on the Angelman Syndrome's Forum told grandma about "scoop bowls" and where to find them. They are really neat and I have a new fork and spoon too. I am doing much better now with these. I am not perfect with them but boy can I scoop up my applesauce and oatmeal.
Did I mention that my grandma joined the AS Forum and chats with lots of angel families all over the world? She is learning more and more about me and all the other angels everyday. New ways to help me with my difficulties and searching for ideas on how I can best communicate back to others. That seems to be the hard part for we angels. I guess God did not think we needed a voice to get our point across so he kept those for others who needed them more. Hey, I can't complain. God made me cute, loving and happy most all the time. And we all know that being happy all the time is a really great thing. Too many sad people in the world already.
So for now, I will just be me and just continue to bring joy and laughter to my entire family. My parents, my Grandma Donna, Papa Rick, Uncle Brian & Aunt Nicki, Uncle Jimmy & Aunt Rushie, Uncle Ricky & Aunt Missy and all my extended family too. Oh yeah, I better not forget my big sister Tori and my cousins Olivia, Abigail, Keith and Arielle. They would be upset if I left them out of the family. Did I mention that Abby is the newest in our family. She is such a little cutie. I may be an angel but she sure looks like one.
At this point in my life I have learned that my joy is their joy and that it is my greatest gift to my family and friends. I get lots of love and support from all directions so not to worry. Whether I ever have a voice of my own, my family understands me and best of all they "get me." Getting me is what matters most right now. And teaching others to get me and all the other angels in the world is what the Angelman Syndrome Foundation and its forum is all about.
There is a band of Angels across the world and our families ARE our voices. They have all joined forces to work together to assure others learn about us and recognize the need for further research on our disorder. We are not autistic, nor do we fit into the various other diagnosis's studied frequently by today's medical research. We are Angels and merely wish to be known across the world for who we are.
My name is Miss Emma and I AM proud to be an Angel. xoxo
Grandma still speaks of how tiny and fragile I was. Not sure I know what fragile means but she used that word often. I found it difficult to suck my bottle and daddy and mommy bought a lot of different nipples till they found one that worked for me. I understand I had reflux too and spent a great deal of time spitting up and had to take medication to help with this. Good news, I out grew that problem within a year or so. Now I eat everything! I love food of all kinds. Fruits, veggies, puddings, applesauce and COOKIES! My sister Tori calls me the cookie monster. Silly, sister.
From what I have been told, I was not doing much in the way of progressing the first year. Not crawling, sitting on my own and kept my body in a very stiff mode all the time. The doctors kept telling mommy and daddy that I was just delayed but nothing to fret about. All would come in time. But....my grandma did not like that excuse. She wanted more answers. Answers that simply were not coming.
So......grandma talked mommy into allowing me to go to physical therapy if she could work it out at the hospital where she works. Well as you may have already guessed, Grandma DID get it all worked out. I started going to PT shortly after my 1st birthday in 2004. That is where I met Christi and Karla, my personal trainers-therapists. They were so nice to me but they really worked me hard. Before I knew it I found out I could bend at my knees, my arms and at my waist. Funny how I did not figure that out on my own, isn't it? Boy did everyone enjoy seeing my new tricks. After my workout, Grandma always rewarded me by taking us to lunch in the hospital cafeteria. The hospital staff there were so nice. They use to come over to see me during my lunch visits. In turn I would smile and laugh with them and eat up all the comments like; "how cute she is" and "does she ever have a bad day?" I guess I must have smiled a lot? I did not know you weren't suppose to smile so much. For me it just comes natural. :-)
Well, on with my story....At the age of 2 the doctors told my parents I had a mild case of Cerebral Palsy and that was why I was not walking, talking and progressing as I should. Bethany from Help Me Grow got involved and by the time I turned 3 years of age I was off to preschool at the local school for special kids. I LOVE IT THERE! More therapies, PT, OT and Speech. And kids to play with too! I even have my own desk and classroom.
In the Spring of 2007, Dr. Manes the school administrator told my parents she thought I may have characteristics of Angelman Syndrome? Apparently she has seen a few others like me. Well, let me tell you that shook my family up, big time. Daddy called grandma and tried to tell her what he was told at my school visit but he simply could not remember more than that it was "Angel-Something" and they suggested I see the specialists at Akron Children's Hospital again. Well it took awhile to get the appointment but we did. And Daddy took me to see three doctors in one day. Of course they poked at me and took some blood, made me cry for a few minutes but I was tough. I made Daddy proud as usual.
That evening Daddy called grandma and told her that all three doctors came to the conclusion I have Clinical Angelman Syndrome, regardless of the blood test results. No one in my family had ever heard of it so my grandma started researching Angelman Syndrome on the internet. Turns out its a rare genetic disorder that I was born with. I knew I was special but wow how exciting to find out I AM AN ANGEL. Pretty cool don't you think? All this news came right after my 4th birthday. The doctors told Daddy to put away my walker, take off that silly brace and let me be me. That I would walk in my own fashion and that was just fine. Silly people, I knew I did not need that contraption but went along with the flow to keep everyone else happy.
Within 2 weeks of my walker disappearing I was off and walking all by myself. I had to let everyone wait a wee bit. Why show off all at once? I have now been walking by myself since late July, early August. (Thank goodness as my knee's were really taking a beating with all that crawling to get around). And if I must say so myself, I am becoming quite of pro with this walking gig. I can reach so many more things that I am not suppose to. Hee-Hee! I can even turn light switches on and off. Daddy loves that trick.
Grandma says my "gait" has narrowed considerably over the past few months and I am looking good. I have also been practicing using sippy cups and eating utensils. I never saw so many different cups in my life. Grandma buys a new one every few days trying to get me to use it. I tease her a bit and cooperate but gee, I really like that bedtime bottle. As for the eating tasks. Well someone on the Angelman Syndrome's Forum told grandma about "scoop bowls" and where to find them. They are really neat and I have a new fork and spoon too. I am doing much better now with these. I am not perfect with them but boy can I scoop up my applesauce and oatmeal.
Did I mention that my grandma joined the AS Forum and chats with lots of angel families all over the world? She is learning more and more about me and all the other angels everyday. New ways to help me with my difficulties and searching for ideas on how I can best communicate back to others. That seems to be the hard part for we angels. I guess God did not think we needed a voice to get our point across so he kept those for others who needed them more. Hey, I can't complain. God made me cute, loving and happy most all the time. And we all know that being happy all the time is a really great thing. Too many sad people in the world already.
So for now, I will just be me and just continue to bring joy and laughter to my entire family. My parents, my Grandma Donna, Papa Rick, Uncle Brian & Aunt Nicki, Uncle Jimmy & Aunt Rushie, Uncle Ricky & Aunt Missy and all my extended family too. Oh yeah, I better not forget my big sister Tori and my cousins Olivia, Abigail, Keith and Arielle. They would be upset if I left them out of the family. Did I mention that Abby is the newest in our family. She is such a little cutie. I may be an angel but she sure looks like one.
At this point in my life I have learned that my joy is their joy and that it is my greatest gift to my family and friends. I get lots of love and support from all directions so not to worry. Whether I ever have a voice of my own, my family understands me and best of all they "get me." Getting me is what matters most right now. And teaching others to get me and all the other angels in the world is what the Angelman Syndrome Foundation and its forum is all about.
There is a band of Angels across the world and our families ARE our voices. They have all joined forces to work together to assure others learn about us and recognize the need for further research on our disorder. We are not autistic, nor do we fit into the various other diagnosis's studied frequently by today's medical research. We are Angels and merely wish to be known across the world for who we are.
My name is Miss Emma and I AM proud to be an Angel. xoxo
1 comment:
Welcome in the Angelman World Miss Emma! My name is Zac and I'm 4yo. I think that your grandma and my mom are on the same Angelman forum!
Nice to meet you. I have my own Angelman blog, but it is in French most of the time, but you can see picture of me!
www.angelzac.blogspot.com
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