General info: I hope this site can be of use to other families of children with Angelman Syndrome.
(last updated: Spring 2012)
Hello everybody! Thanks for reading! My name is Emilie, and I live in Michigan. I have five children: Madeline (14 years old), Cassidy (12 years old), Andrew (8 years old), Jason (6 years old), and Nathan (3 years old).
I work for my state’s parent training and information center (an IDEA mandated project) and fill the rest of my time with kid activities and reading.
My main interests are education, teaching through play, music, special education services, Angelman Syndrome, inclusive education/ inclusion, self-determination, early childhood development, augmentative communication, assistive technology.
If you would like to contact me, please do so through the ”leave a reply” section of this site.
Oh!
And please bookmark me!
As promised, a photo:
No that is **NOT** photoshopped! That is yours truly with the moviestar Colin Farrell!
All right, stop laughing, regain your composure and finish reading! : P
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Hi Emilie!! I am looking forward to reading more about your beautiful family and learning about Angelman Syndrome.
Love lots!
Hi Emilie,
thank you for sharing your experience with everyone and also for sharing some of the IEP goals. I have a 5 year old son and 4 year old daughter with AS. I also have a son who will be 2 at the end of the month. My oldest son will start kindergarten in the fall and I struggle with the IEP portion wondering if it is sufficient and attainable enough. thank you so much for sharing some of your goals. Friendship and independence are my main goals at the moment, oh, and social behavior is a big one.
I look forward to checking back to this site in the future.
Regards,
Lisa
The words Angelman Syndrome were uttered to me for the first time today… I would love it if you could email me the exact tests that were done on your daughter, mine has had the initial DNA analysis which turned up normal but a neurologist today wants to look further into it. I want to make sure EVERY test for this syndrome is done, because it sounds SO MUCH like my little girl… the little girl who has never taken a picture without smiling since she learned how to smile, the little girl who they thought might have autism except for the fact she is so darn social… If you have a moment!
Hi Sarah.
The sequence of tests to rule out Angelman Syndrome can be found here on Marc’s site:
http://www.armyofangels.org/angeltest.htm
I wrote a little bit about our diagnosis drama here:
http://mcdj.wordpress.com/2007/12/31/getting-a-diagnosis/
and specifically about the UBE3A mutation here:
http://mcdj.wordpress.com/2008/03/19/ube3a-results/
(make sure you read the comments, that’s where I posted some weblinks)
I’m glad you found my blog! Please feel free to email me. If you’re not familiar with the Angelman Syndrome listserv, I can get the signup information to you.
Best wishes to you and your daughter.
Hi Emilie!
I’m friends with Jen R and I thought I’d check into her blogroll, and found your blog. You have a beautiful family! It’s so good to see another stay-at-home-mama who is so involved with her kid’s lives. Great job! Also, thank you for teaching me more about Angelman’s, it gives me hope for the kids in our lives. You are one busy lady!
Hi Sarah.
Thanks for clicking over. Jen is a great mom, I’m honored to be on her blogroll!
: )
Emilie
Hi! Thank you so much for having this website. My 3 year old daughter and I seem to be going through the exact same thing you did. She has tested negative for all the main tests, but for about 2 years now AS has been on my mind because that was the initial thought of the geneticist when she was one year old. She has all of the symptoms. My next step is to get the test for the UBE3A mutation which is how I discovered your blog. I have been trying to find another girl like mine for so long to get a prognosis. Your daughter seems very high functioning and I would like to know if I can ever hope that my daughter would be like yours at 10. My daughter still cannot walk independently. She has no words. What was Madeline like at 3? How can I determine if she is high functioning or not at this age? Also, did your insurance cover the testing or did you have to pay out of pocket? And how long did the testing take? In any case right now my daughter is receiving services for autism and I don’t know what kind of program she should be having. Can you tell me what a program for AS should encompass at my daughter’s age of 3? I want to know what you did with Madeline at this age so I can do the same. Again, thank you so much. You have know idea what your blog has opened up for me in terms of hope. I would love to talk more about this with you, but I’m not sure how to do that. This is my first time commenting on a blog.- Cindy
Hi Emilie,
It’s Kristen C. from the county to the west
. I just found this when I was searching for info about Kathy Snow’s speaking dates.
Nice to see a familiar face and I look forward to reading your blog
!
Hi Cindy. Sorry so long to reply. It was back to school week here and then a week of stomach flu
: (
I am working on a post that answers the questions you put here.
I sincerely hope you find your answers.
Emilie
Hi Kristen!
I’m trying to figure out a way to come to the October conference in Adrian. Its a tricky day for me, but I’m hoping I can swing it.
: )
Em
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Hey Emilie. I always have a hard time getting it all done in a day. What is your routine each day?
Thanks,
Jen
I love your site. Keep it up !
Hi, I’m enjoying reading your blog (going backwards through it:-))
I have a 9yr old toad/squid (new name after a visit to the cinema today) with deletion. Will be putting a link to your blog from mine if you don’t mind?
Emma
Hi Emilie,
My name is Paula, my daughter Ainsley is 5 del+. We’ve met at the St. Louis conference and I’ve emailed with you in the past. I would like to speak with you about something if you have the time. Could I contact you or vice-versa?
how very very cute you and yours are
Did you know about the Vivint Gives Back Project?? $1.25 million to charities and the official voting begins today (already did the nominating and endorsing phase). It goes through August, but you can vote once per day.
The Foundation for Angelman’s Syndrome Therapeutics is pretty high up on the list. We keep jumping around from 1st to 3rd place. Every vote counts! The charity with the most votes gets a $250,000 donation, and the top charity in each of 5 regions gets a $100,000 donation. You know how far that can go with AS research!
http://www.vivint.com/givesbackproject/charity/43
Let’s get the word out!