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

Progress and Hope

Every night at bedtime, after Ferris is asleep, I go sit with Fiona in her room and we do our bedtime routine. The first step of course is nursing. This is great for calming her in the evenings, and seems to reduce her stimming for a bit, which helps her to focus.

Next, we play with a few toys, usually her magnetic art board thing. She loves that, and loves for me to draw on it with her. She will take my hand, and put it on the magnetic pen, and wrap her hand in mine, it is super cute. I let her direct the pen, my hand is just there as a comfort I think. She doesn't really draw anything specific yet. She is really into lines. I think she is trying to draw the letter A sometimes.

After toys, I tell her to get a book and I will read it. She gets a book, I read and she turns the pages for me. Next, she runs for her Big Book (it has letters, first words, colors, numbers, etc.) and climbs in my lap and opens it to the alphabet page and points to the letter A, and clearly says "A"followed by the same for the letter O. Then she grabs my hand and makes me point at all the letters and say them for her. Next I ask her where some of the letters are, and sh gets them right most of the time. We only do 4-5 at a time though, because she gets bored and wants to move on.

Next is numbers, and she will point at objects while I count them out loud for her. Then we do words, and I ask her where each thing is and she points to the picture, and is usually correct.

I know for some people this doesn't seem like much, but it really is, and I am so proud of her.

Lastly, she climbs into bed and I tuck her in, with her glow worm, named Glowy, and I tell her to push the button, which she does, and I ask for a kiss. She holds Glowy up for me to kiss. Then if she is feeling nice, she will pucker her lips and let me have a kiss, other times she covers her face. Then I tell her to give Glowy a kiss, and she does. Such a sweet girl I have... <3


  1. When Ashlyn was little, I used to love her kisses. She never could kiss me directly on the lips. She would try, but she used to miss my lips EVERY time. One day (she was about 3), she grabbed my face and went in for a kiss. Grabbing onto my face, she was able to give me a kiss directly on the lips. It was too cute! I'll never forget those kisses. Now she is able to give me a "normal" kiss, but every time she kisses me I think back to the when she gave me the kisses that missed my lips!

  2. Sounds like a wonderful bedtime routine. I bet you guys really look forward to it.

  3. Fionas kisses are cute too, when she puckers her lips she does it with her tongue stuck out a bit, it's quite funny. I'm sure when she is older I will look back and reminisce and miss those sloppy toddler kisses, too. Hehe.

    Anna - yes, I love bedtime and definitely look forward to it, hehe. If I didn't need sleep, or to feed Ferris halfway through the night, I'd seriously sit and rock her all night. She is such a special girl.