General info: I hope this site can be of use to other families of children with Angelman Syndrome.
Hello everybody! Thanks for reading! My name is Emilie, and I live in Michigan. I’m married to my husband, D, since 1995. We have five children, Madeline (11 yrs old), Cassidy (9 years old), Andrew (5 years old), Jason (2 years old), and Nathan (born Feb 2009).
I am a stay-at-home mom with a full time schedule of volunteer commitments. My main interests are education, teaching through play, music, special education services, Angelman Syndrome, inclusive education/ inclusion, self-determination, early childhood development, augmentative communication.
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:
or two!
All right, stop laughing, regain your composure and finish reading! : P
16 Comments
April 4, 2008 at 12:05 pm
[...] About Autism! Autism! Autism! [...]
April 9, 2008 at 9:45 pm
Hi Emilie!! I am looking forward to reading more about your beautiful family and learning about Angelman Syndrome.
Love lots!
April 11, 2008 at 12:37 am
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
April 30, 2008 at 1:25 pm
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!
April 30, 2008 at 2:56 pm
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.
July 18, 2008 at 1:53 pm
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!
July 20, 2008 at 11:15 pm
Hi Sarah.
Thanks for clicking over. Jen is a great mom, I’m honored to be on her blogroll!
: )
Emilie
September 4, 2008 at 8:04 am
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
September 5, 2008 at 11:06 am
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
!
September 16, 2008 at 8:47 am
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
September 16, 2008 at 8:48 am
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
September 16, 2008 at 9:09 am
[...] About [...]
October 4, 2008 at 1:56 am
Hey Emilie. I always have a hard time getting it all done in a day. What is your routine each day?
Thanks,
Jen
March 30, 2009 at 1:48 am
I love your site. Keep it up !
June 14, 2009 at 12:06 pm
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
November 3, 2009 at 9:55 pm
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?