Wednesday, February 1, 2012

Angel Words: Volume 1

When you read about Angelman Syndrome, you read words like "intellectual disability", "seizures", "nonverbal." But reading about AS doesn't really give you the full and complete picture of Angels. Does my child have an intellectual disability? Maybe, we don't really know yet. Does she have seizures? Not yet, but she probably will. Is she nonverbal? So far, yes. But we have hope!

Reading those words, you might not understand what Ava is like. How she communicates (because she does- much clearer than many of the three year olds I have worked with in the past!), what she is able to do. Many bloggers do a "Wordless Wednesdays" every week, but I have decided to do "Word Wednesdays", and each week I am going to (at least try) to pick one word that describes AS, my Angel, or our lives dealing with Angelman Syndrome. This weeks word is...


Able. Ava is ABLE. There are so many websites that talk about what individuals with Angelman are not able to do, that I find it important to point out what Ava is IS able to do! Because she can do so many wonderful, special, magnificent, and amazing things, in spite of her diagnosis. And those are accomplishments to be celebrated. Because the things she is able to do take her 10 times longer and she works 10 times harder for them than a typical child, and they are major milestones that many individuals with AS may never achieve, and she has done so by the age of two!!!

Ava is ABLE to:

  • Sit up unassisted, and has done so since she was 10 months old!
  • Feed herself, something some AS individuals never accomplish! She has been doing this since about 10 months old as well.
  • Crawl. She has been crawling in some form since about 8 months, and now crawls almost as fast as I can run!
  • Pull up on things! This started around 12 months and hasn't stopped since!
  • Cruise around furniture! She started this about 14 months and now will let go for a few seconds at a time.
  • Plays games like peek-a-boo and hide & seek (with objects)!
  • Gives kisses- something she has done since she was about 4 months old, well before most of her typical peers!
  • Turns pages in a book- if she is in the mood!
  • Climbs on the furniture- not my favorite achievement, admittedly. But one none the less!
  • Can take steps with minimal assistance and has even stood for a few seconds and taken one independent step!!!

My sweet Ava, mommy and daddy love you more than words can express, and we are so very proud of you for all of the things you have accomplished in your less than two years on this Earth! And we know that you will break the mold for Angelman Syndrome and do things that blow everyone away!