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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Wednesday, March 26, 2014

Happy 9th Birthday Amanda

Amanda is 9 today, she is having fun eating chocolate covered ice cream (almond creme) and watching her favorite movies!

We will not have a huge party for Amanda, they stress her out and are not fun for her, so we will celebrate quietly.

Amanda is saying more words every day, she is beginning to shake her head yes and no, which is fantastic for her, it gives her more of a voice, she is fond of NO. Since she is mostly non-verbal, but likes to surprise everyone with random words here and there.  She communicates with gestures, limited sign language and actions.  We have tried many different devices and communication tools, so far none have resonated with her, we are filling out paperwork to get her an iPad to use as her communication device. Her speech therapist and we are hoping it will be exactly what she needs. We have a few speech programs on the family iPad, but since we all share it, it cannot be used exclusively for her.

She has made gains in development, but since she was so very delayed, she is still very far behind other children her age (with Down syndrome). We try not to compare, she is her own person, unique and special in many ways.

She likes to watch Barney and High School Musical, she is a huge fan of most musicals. She bounces on the couch as her way of dancing to the music, she can get pretty high in her bounces.

She adores the iPad and stresses if it is not her turn to use it, will repeatedly try to take it from whoever has it. Her favorite application is Endless Alphabet and a very annoying music program that plays golden oldies like "My Clementine" and "This Old Man", she often switches the language to French and loves hearing "Old MacDonald" sung in it.  Her parents are not as thrilled with the constant music.  Mommy turns down the sound and Meghan or Kara sneaks over and turns it back up, so far Amanda has not figured out how to do this. She loves to scroll through apps too, and will turn on so many she kills the battery!

We have to limit her time on the iPad because it does seem to make undesirable behaviors worse at the end of the day.  (Scratching, biting, pulling hair, throwing things, knocking things off tables) We notice that one hour usage with a 3-4 hour break in between each use works best for her.

She carries baby dolls around the house and likes to lick their faces. She has favorite dolls, and likes talking toys the best. Toys made for toddlers hold her interest the most, toys for older kids often get thrown and broken.

She is taller, but still pretty thin, she weighs under 30 pounds, her doctors say she follows her own growth curve and are not overly concerned about her size, people often think she is a 4 year old.

She is silly, sweet, and autism also makes it hard for her to relate well with others. She wants to be held by most people, but often scratches them or pulls their hair, if they wear glasses, she knocks them off their face. I am so grateful to the patient people who continue to try to form a bond with her despite those behaviors. We work very hard on helping her interact appropriately, it is a constant endeavor. Some days the behaviors get pretty challenging, some days she has very few. The dual diagnosis of autism and Down syndrome is difficult for her, for us, and for our family, but we are never going to give up on her, we love the little scamp, she is our daughter now and forever.

Happy Birthday Amanda Kristell!!

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