Who am I?

I am Amanda, a stay at home mother to two wonderful children, Fiona & Ferris. Fiona has Autism, possibly caused by a small genetic deletion at 22q13.1 (but not the region attributed to Phelan-McDermid Syndrome - although she presents similarly), but we cannot say for certain, as her particular deletion is undocumented. In other words, according to medical literature currently available, she is the only known person with a deletion in this exact region, and so it is of "unknown clinical significance" and we have no idea what her future holds. Currently she is almost completely non-verbal, her only real word with any real meaning being "boob" as she is breastfed. *gasp* Yes, you read correctly, my almost 3 year old daughter still nurses, and I'm proud of that fact. Ferris is a neurotypical little chubba bubba baby man. He gives me sanity, and hope, and comfort for the future. He is nearly 8 months old at the time of this writing, and he is my charming, adorable, little-big guy. He is also breastfed, and doesn't seem to mind sharing with Sissy, who is the neatest thing since pureed peaches in his eyes. Want to know more? Just ask!

Thursday, March 24, 2011

The World She Knows

The other day, Nathan and I were talking about Fiona, how wonderful and smart she is. We try to always focus on the positives, and how lucky we are to be her parents. We were talking about how much we love her just as she is, how her Autism actually gives her some wonderful traits and abilities. For example, she notices the most intricate of details, things most people would never notice. She also seems to have a photographic memory. Even though she does not communicate verbally, we have noticed that her memory of object placement is superb, and the way she flips through a book, methodically, purposefully, taking in each page and quickly turning to the next. We also know she is incredibly smart, and figures things out that most kids even twice her age might struggle with. Her receptive language is quite good, we know she understands most of what we say to her, she just doesn't respond verbally. She has her ways of asking for things, just differently. She is fascinated by the feel of things, textures are her passion. She will enter a room and touch everything, and this makes her happy, so happy. And this is what really makes me smile, and warms my heart. Yes, she may have her moments of upset when she is frustrated, mostly due to communication issues, but most of the time, she is such a happy little girl who loves with all of her heart, and when she smiles, you can't help but join her. And I believe she will always be happy, and what more could any parent ask for?

I love her so, so much.

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