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, May 12, 2011

Thoughts on the Future

Something has been bothering me lately, a fear I guess you could say. I'm afraid of becoming afraid of my daughter. Not that she is vicious or evil or anything of that sort, quite the contrary actually, she is sweet as pie, and delightful to be around. That is, except when she is upset. We still have this total lack of communication, as she is still for the most part, aside from a few select words, non-verbal. She gets frustrated when she wants something, and cannot tell us what she wants, and sometimes we can't figure it out, and that makes her more frustrated, and then the tantrums begin.

Now, I know every child has their moments, and all go through a tantrum phase, but if you've not seen a full on Autistic toddler tantrum, you cannot possibly imagine what I'm even talking about. I mention this because every time I talk about it to anyone I feel like eyes are rolling at me on the inside, like, oh please, all kids throw tantrums, or I get the "I know what you mean, my kid throws tantrums all the time", but see I've seen other peoples' kids throw tantrums, and trust me when I say, unless you have or have been around a child with Autism, you have No.Idea.

Up until now her tantrums have been manageable I guess you could say. We do on occasion (okay daily) get kicked, slapped, or scratched. And you'd be surprised how strong this child is. Now she doesn't mean to be bad, she doesn't understand, she just cannot communicate, and it pisses her off, and she lashes out when we offer the wrong solution to her mystery problem. While it is an inconvenience now, it is, as I said, manageable. But for how long?

She is already incredibly strong. And growing like a weed. And she clearly has her father's tall gene. Those who know me know I'm a fair bit on the vertically challenged side. She will be bigger than me one day. What happens then? Is she going to throw these tantrums forever? Will there come a time when I am afraid of my own child? I know that I will never give up on her, I will always be there for her, no matter what, but please don't let it be so difficult forever. Someone please tell me it gets better with age and not worse...

This is just a thought that has been plaguing me lately. What am I going to do? I am her mother, and I will always take care of her, but what happens when I can't? Anyone with experience, with older children, please shine some light my way, share some wisdom, tell me what my future might hold?

=(
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