I'm back...Let's see if I can catch you up on things!

Well its been a long couple of weeks. First we had to prepare for my IEP meeting and that was not easy. Much to do to get ready for next school year. The IEP meeting went well but long. I went too but no one planned on me being there for 3 hours plus! Grandma and daddy said I don't have to go next year if I don't want to. :-)

It was decided that I will keep my 1:1 aide for various reasons; safety being the main reason, followed by my need to be overseen as I am still too friendly with others. I just cannot seem to get it that others don't want to be kissed and hugged by an angel all the time! I thought everybody liked my hugs and kisses, but I guess not. :-(

Ms. Cathy is my pre-K teacher and she had such positive things to say about my progress this year. She even told everyone that I understand what they are saying to me and will follow directions. How is that for cool? Poor grandma thought only she, daddy and papa got that part of me. Well.....turns out others do too. So my teacher is going to work on teaching me my colors and shapes this upcoming school year. And I am going to extended school in July for 4 weeks. My goal for the summer school is to focus on interaction with my peers. I guess its not good for me to not know how to play with other children and they want to teach me a little bit about how to do just that. Between you and me, I bet I try kissing and hugging them. After all that is what we angels do best. We give unconditional love to all we meet along life's journey. And we do it so well.

I will be spending more time next year with non-disabled peers at school. Something my daddy and grandma really wanted for me. What they did not know is Ms. Cathy was already borrowing kids from another class to spend time with me. LOL That will teach them not to ask me things!
Oh yeah, I am going to start focusing more on my communication skills too. I use a big mac button but it sounds like we may be advancing me towards a ACC device. You know I got a really nice Talk & Speak sent to me by Emily & Tyler. And my school has the board maker program so they can adapt it to specific pictures that interest me day to day. Just one more neat thing happening in 2008-09 school year. (I told you I was going to be busy).

This week was my 2 month neurology appointment. All was well with me and no seizures since January, so I don't have to go back for 6 whole months! How is that for good news? And other than a wee bit of the sniffles I have been quite healthy. Grandma is just sure it is all the supplements she has me taking. I just thinks its good fortune and the fact that I love to eat fruit and veggies like I do. If its green I like it. Broccoli, spinach, green beans and peas. They are all high on my list of yummy foods.

Did I mention that I am a carb junkie too? Well I am! I love pancakes, waffles, bread/rolls, oatmeal, pasta (no red sauces) and dairy. Yoplait kids yogurt (banana) is one of my daily staples. I also like when grandma and daddy take vanilla yogurt and add chopped fruit. Mmmm ...

OH MY GOODNESS! I almost forgot to tell you. Not only have I mastered using a fork and spoon to eat, I am now using straw cups. How is that for progress? Geesh, the things I have learned in the past few months. I know I should be exhausted with all the work I have put into these milestones but I'm not. I love learning new things. I really do. I think I take after my big sister Tori, as she is really really smart and doing awesome in school. Her teacher sends home such wonderful notes about her. I have to try to stay with her on learning cause we sisters are after all very competitive little females. LOL

Here is my new cup from Grandma in celebration of my latest success!

My biggest and best new milestone is calling my daddy by name. I have it down pat now...Da da rolls off my tongue so easily now and my daddy just lights up when I call him by name. (I do know how to win his heart).

Well for now I have to go as grandma is really busy helping out a friend of hers. She is extremely ill from what I overheard and grandma and a few close friends have been taking turns staying with her. As a matter of fact Tori went to keep papa company tonight so he would not be all by himself. That's my big sister for you! She keeps papa company and gets a wee break from her little sisters hugs and kisses. But she knows I will save her bunches of kisses for tomorrow. I always do.......

Angel hugs and sloppy kisses to all,

IEP week is over and all went well...

IEP week has come and gone and all is well. Grandma and daddy worried themselves for nothing. My teacher Miss Cathy gets me too! She sees that I understand what everyone is saying to me and that I do respond to directives. How cool is that? I will post later this week and fill everyone in on things...grandma and I have a full week ahead of us right now so this has to be short and sweet. (Like me).

My IEP Map for Success for 2008-09 (draft)

Hi Everybody! Grandma prepared a "map for success" powerpoint to share with my school during my upcoming IEP meeting. Below is a link that should take you there to see it.

Wish us luck...as with so many others I too have dreams for the best education available. :-)

http://docs.google.com/Presentation?id=dhb3tp3x_0c9c3g3h5

Playing catch up on my posting... :-)

Well if it is not enough for me to be such a busy little angel, now grandma too is running about helping care for a dear friend of hers. I think she and I have that in common, like to be busy and running about. :-)

Spring break was nice, but I was ready to go back to school. Lots for me to learn as of yet and I don't want to fall behind on things that I have accomplished. My IEP meeting is coming up and I am working with grandma on sharing the things I like to do, what motivates me and a few of my body signals and what the mean when you see them. Grandma is hoping it will assist in others understanding me easier if they know what certain actions mean like when I want a drink or am hungry. I tend to get dehydrated and my cheeks get really pink if I am not consuming enough fluids. Most don't know that my body temp is out of whack so we are hoping to share that with them at school.

I caught a cold again at the end of Spring break. Geesh! I guess I cannot complain as that has been about the worse for me this winter unlike others. It must be all those supplements I am taking. Daddy and grandma give me lots of healthy things to make certain I stay healthy. And since I love veggies and fruits so much we all think that my eating is assisting in keeping illnesses away. So everyone do eat your fruit and veggies like me! They are very good for you, honest. :-)

I just outgrew my shoes again and we had a difficult time finding shoes narrow enough for my long slender feet. Finally grandma bought a pair and had her friend alter the straps a bit so that I could wear them. It seems everything that she found that was fairly narrow had velcro straps and they all tend to be too stretchy for me. So her friend cut the straps shorter and sewed them back together for me. Pretty cool huh?

Oh yeah, I got my report care too and have mastered almost ALL my goals for this year. Yippee! That means new stuff is coming for me to learn. How cool is this? My reports seem to get better and better all the time like my big sisters. I think we are competing with one another now. LOL

Well I have to get ready to go to Aunt J's house. She is our daycare provider and is really a sweetheart. She does lots of things with Tori and I when we are there. We ever have tea parties! Aunt Sherry hooked us up with a wonderful care giver and we are so fortunate to have her.

Have an angel of a day!

Busy week for me....Spring Break and what a hoot!

Well it was Spring Break for this angel and Aunt J my new daycare provider found me to be quite a treat. :-) My sister showed me how to topple the dining chairs over and Aunt J being of the artistic nature quickly found a way to tie them together with ribbon so I could not continue to topple them! I just love that woman and so does my family. She IS a Godsend to me and Tori. And we all thank Sherrie for finding her for us!

Aunt J has been reading up on Angelman Syndrome so she understands me better as we go along our journey together day to day. My grandma is so thrilled that she has fallen in love with me and sees that though I may be a bit of a challenge at times, I AM A LOVING LITTLE GIRL WITH SO MUCH MORE TO ME. That is the hardest point for my family to get across to others, but Aunt J has managed to see it rather quickly and we like that.

I "get it" more than most realize. And though I do not speak like others do, I do my best to let you know what I want or need. You simply have to pay more attention to my actions. Remember the old saying; "Actions speak louder than words." Well, I AM speaking just through my actions! Please take a few extra seconds to watch me and you will see that I too have wants and needs. That I AM communicating constantly to you, I just express them differently because I cannot vocalize yet. Key word is yet~my grandma is convinced one day I will speak. May not be perfectly but I will speak simple words and get my desires across to others. I love that so many have faith in me. :-)

Aunt J's hubby, Uncle D is already planning our summer time with them when school is out. Aunt J told grandma and daddy that he is planning to fence a section of the yard for us to play in. Grandma was delighted of course to hear that as they have a pond that we all know will draw me to it. After all water is my game and Miss Emma is my name! LOL

Tori was challenging Auntie J a bit in the beginning of our change to a new daycare provider. But it did not last long as daddy, papa and of course grandma sat her down and explained that it would not be tolerated to misbehave or argue with Auntie J. So, needless to say they are nipping that it the bud accordingly and it appears she is catching on fast. The remainder of the week she was a good girl and that pleased all of us greatly. Aunt J even curls her hair for school. How cool is that to have our own stylist???

Oh, I have to share something really neat with you. Grandma and Papa went to dinner Saturday with several parents of Angels in our area! Yes, your reading this correctly. Finally we have found a few angels to introduce daddy, Tori and I too. How cool is this????? They were lovely people and quite joyful to be around as grandma and papa told us. They too see hope for all of us in various ways and Andrea and Matt have created a foundation that will one day build a special home for us to live in when grow up. Can you beleive that? To know for the first time that I too will have a place of my own to live in when I gradudate from school. (And I WILL graduate from school one day). Daddy and grandma will see to this.

My family clearly wants my education to be all that it can be in my situation and intend to fight for such. After all, no child left behind is what the law says. I too have a right to a proper education that meets my individual needs just like my big sister Tori does. Only my needs are a bit more unique than the average child. And that is okay. WE all have our own individual weeknesses and with those we also have our special areas of strength. So we have to include and share both sides of the spectrum specific to me and open up our IEP this year to address all of them more agressively. Especially my communicating with others.

Not going to be an easy road, but one we beleive that can be done with those educating me at this time. Miss Cathy would like to keep me one more year with her so we are leaning towards this if the IEP is directed at offering more challenges than in the past to help me prosper more as a 5 year old and that is what I will be this summer. And personally five years old is an interesting time to move forward with new challenges and goals beneficial to my needs. To be able to communicate and thrive in the real world. Wish us luck as we should be getting our IEP appointment soon.

So as you can see........what a week we had in Miss Emma's world. We even got sent home early from visiting our mother as she called daddy and said she wasn't feeling well and wanted to cut the visit short. Some days it is like riding a yo-yo with our visitation time. We go, we want to go home and now she wanted to cut it early. I hope this does not go on like this forever. Its no fun being tossed about and me I like my routine too much to be jolted about like a doll. I must have a routine to thrive and daddy and I know this to be the best thing for me. I am a creature of habit and consistency. I like 'repeatition" in my daily life and have proven to all who work with me and live with me that it is my best attribute. I am thriving these days and healthier than ever before because I finally have consistency in my home, my school and now in my daycare Aunt J.

Life is good and I hope yours is also. Miss Emma signing out. Big hugs to all the familes of angels tonight.

P.S. My bus aide had a great term for indentifying my personality. She said I am "contagious" and grandma told everyone that says it all....Contagious. I kinda like being contagious to others. Opens a whole new world of freinds for me. LOL

This weeks update. :-)

This past weekend my big sister Tori finally got to have her birthday sleepover with our cousin Olivia. It was suppose to happen last weekend but we got hit with a big snow storm and it had to be canceled. But for those that live in Ohio, we all know if you stick around long enough the weather will change . LOL And it did.

The best part of the canceling of the sleep over birthday celebration was Tori got not 1 but 2 birthday cakes! Woo hoo! I just found out that I like Dairy Queens ice cream cakes! I turned in a bit early the night of the sleep over as I came down with the change of weather cold and stuffy nose thing. Boy do I hate having to have my nose wiped so much. :-( Daddy rubs me down with cherry Vick's vapor rub and off I went to sleep. I guess they had a pizza party without me? Hmmm. That is okay, I don't like pizza anyway!

My cold is on the downside now and I am starting to feel better but I think I passed it on to Tori. Oops! Kinda hard to keep it to myself when I am all about hugs and kisses. Sorry sis......but it comes with the territory of sloppy kisses and angel hugs. Well off to bed for me as I have school tomorrow and need my rest.

Angel hugs and sloppy kisses to all,

Congratulations Miss Jordie and family. :-)

Congrats to my classmate Jordie. She has finally been given a diagnosis and she is more rare than we angels. She has CFD (Cerebral folate deficiency) which is an extremely rare disorder and her parents are celebrating finally having a name to her syndrome. Strange as it may sound to some we know what it was like not knowing for 4 years precisely what my diagnosis was and how thrilled my family was to finally know. And then to find out that I was an angel was just too cool as it led us to the Angelman Forum.

So please, all my angel friends and family celebrate with Halle, Bill and Jordie's family as we do tonight. :-) And please take a look at just how beautiful my classmate Jordie is..her mommy let me share her picture with all of you. Take a look to the right column of my blog page and meet Miss Jordyn. :-)