Weekend with daddy all to myself...

Well Tori went to grandma and papa's house this weekend so I had daddy all to myself. Boy did we have fun. Daddy and I went out to breakfast at Bakers Square, then shopping. Daddy said I was such a good girl in the restaurant. I love going out to eat in case you did not know that. I love watching all the people and smiling at everyone. Its all most as much fun as eating! I am waiting for daddy to give grandma a picture of me in my Halloween costume to share with you. I was an angel this year to celebrate my finally being diagnosed correctly after all this time. At least that is what daddy and grandma told me. I looked so cute! My big sister and cousin Olivia were princesses. Funny how they both picked out the same costumes isn't it? I guess great minds think alike. Me, I just like doing my own thing like all my other angel friends. That is what makes us so special so my daddy keeps telling. Hee-hee. I think he just is prejudice when it comes to me and my sister. I guess most daddy's are............

Well I am going to go to bed before daddy finds out I am still up and messing around. I will try to get my Halloween picture on here soon. Angel hugs and sweet dreams to all.

Shared by Jennifer Fiander..regarding well-known Actor Colin Farrell's son James also has Angelman Sydrome.

Just announced: Well-known Actor Colin Farrell's son also has Angelman Syndrome
Yesterday I was forwarded an article that announced that Colin Farrell has a son with Angelman Syndrome, the same disorder my son has. Wow. Finally someone well-known that maybe can shed some light on AS.
I belong to an AS listserv. I don't go on it very often now, because I rarely have time with the kids and with my business. But I went onto the listserv to check the reaction of everyone to this story.
It’s funny, all of the parents who were on the AS listserv always wished there was someone famous who was affected by AS, so that there would be more awareness of it. So, with the news being released yesterday about Colin Farrell, our combined initial reaction of course was- wow! Some people were openly ‘excited’ by this news. Not that we wish for people to have children with special needs, but we have all become sort of a ‘family’ on the listserv, so we gladly welcome any newcomers. And the majority of us also know how much having a child with special needs enriches our lives, so we don't 'feel sorry' for those in the same situation as us. And the article was a positive one, talking about how Colin feels blessed by his son, and how he – even though the boy’s mother and he are no longer together- is still a very present and hands-on dad. A few people on the listserv were working at contacting him through different methods, and there was a LOT of talk going on about how it was going to bring awareness, etc.
As I was trying to go to sleep, I couldn’t get this situation out of my head. All of the greatness of having a celebrity attached to AS didn't make sense anymore- the fog in my brain had cleared. What did we all want- a spokesperson for Angelman Syndrome? Wow, we were naïve… He and his ex don’t need the responsibility of feeling like they have to do that sort of thing just because they are a celebrity. And the idea that he is a celebrity going through the diagnosis, dealing with the things that we all deal with when our kids are young- how we feel, how we feel about others’ perceptions… I wonder if he felt forced to release the article. Was there really any other way? Would they just continue to live their lives as ‘normal’ and get chased by photographers on a daily basis and read write-ups in the enquirer or whatever saying ‘What is wrong with Colin Farrell’s son?” . Dealing with your feelings of having a special needs child in those young years or any years are very private. I can’t imagine not being able to live those moments quietly.
Of course, once the hype settled on the listserv, many of us realized that we can welcome Mr. Farrell and his son’s mom to the list, and to give them the support that they need (even if they join anonymously), without invading their privacy or being pushy. Even celebrities need support for these things.
Still, I did forward the article on to family and friends who I thought might be interested. And it is nice to see “Angelman Syndrome” out there for the world to find out about.
And a friend of mine who does NOT have any special needs children, but is still a very wise woman responded to my email with this:
It's just too bad that it requires a celebrity to bring awareness to it. After all, does it really have the same implications for someone who can afford all of the help, medical care and specialty equipment that money can buy?
Wow, that is powerful. And true. But at the same time, I’m happy for little James that he was lucky enough to be born to two loving parents who DO have the money to care for him. However, with most of us, it is not the case.
I love (sarcasm) how they always say “SUFFERS from Angelman Syndrome” . So many AS people live healthy and happy lives. I hardly call being happy everyday ‘suffering’.People’s perceptions have to change.

My story as I know it.......

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

I am up and running...blog page that is!

Well today grandma decided to start my own blog page......Anyone know what that means?

I am going to have to talk to daddy about this. Maybe he can explain what blogging is? If he can't I know my big sister Tori can. She is 5 1/2 years old and goes to kindergarten so she knows everything. Just ask her!

I bet she will know what grandma is up to. I will let you know what I find out tomorrow. In the mean time, its past my bedtime I so gotta go. Can't let daddy catch me on the computer now can I?

Angel hugs and sloppy kisses to all. Night night......