To Syrina With Love

Syrina is 12 years old (born January 18, 1995). When she was 18 months old, she was diagnosed with autism and epilepsy. Even now, she can't speak, can't go to the toilet (she wears specially made diapers), and can't do such rudimentary things as feeding herself using a fork and/or spoon. This blog is comprised of all the things I would love to say to her, but which I don't know that she'll ever understand. I, of course, am her mother.

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Location: Sunderland, Tyne & Wear, United Kingdom

I'm an American "ex-pat," having moved to my husband's hometown in 2003. I'm now enjoying life as a "domestic goddess" ... or as close to one as I can GET! *lol* I've been married to the love of my life since 1999, and I have 4 gorgeous girls, of whom I'm very proud. I can be a little neurotic and krazy at times... and very opinionated. However, as opinionated as I am, I'm also very open-minded and have a "live and let live" attitude. I'm a walking, breathing contradiction... and that's why people love me. :)

Tuesday, January 30, 2007

Little Miss Insistent

Syrina's at respite care this week. I had to make an extra trip over there today to drop off more of her medicine (her refill came in late).

The goofball came out of her room (she has her own room there) and ran STRAIGHT into the dining room. When she saw there wasn't any food on the table, she came back out, grabbed me by the arm, and dragged me in there. She pulled me to the serving hatch (it had shutters across it, keeping it closed), and put her hand on the shutter, trying to push it open. When I wouldn't open the hatch for her, she went into a huff and stalked off. As I was speaking with the staff, she tried several times to sneak her way into the kitchen.

Talk about insistent! *lol*

I think the fact that the smell of food was very pungent in the house probably had something to do with it, though. This kid will wake up in the middle of the night if she smells food!

I just thought it was funny. Even in a place where I'm not usually at, I was the first person she came to to try and get what she wanted.

But both the staff and I noticed that where once upon a time she would cry if she didn't get what she wanted, this time she took it quite calmly. No, she wasn't happy about it, and she made it plain as day that she wasn't happy about it, but she didn't even come close to crying.

That's one of the things I've noticed about Syrina. The older she gets, the calmer she gets. She still lets everybody know if she's hungry or thirsty and she's not getting what she wants immediately. But she doesn't get all worked up about it and start crying. Of course, the fact that she's learned alternative ways of letting us know that she's hungry or thirsty helps a LOT. Crying used to be her ONLY source of communication for things like that. But slowly she's learned alternative coping mechanisms, and it's helped all of us. She doesn't have to get all worked up about things, and we actually KNOW what she wants for once. Even if we can't get it to her right away, we know what she wants.

It makes me really proud of her to see her like that and know how far she's come in such a short time. It might seem like a long time to most people, but the years have flown by, and the fact that she's learning anything at all just amazes me sometimes. I was told for years that most likely she'd always be like a 3 month old baby. I was repeatedly advised that she would never learn much more than she knew at 3 years old. And while a lot of that has proven to be true for the most part, I can see an awareness in her that she simply didn't have when she was younger. She knows the people around her, and actually pays attention to them. I can't even begin to count the number of times in the past few weeks when one of her sisters will be talking and she's paying close attention to what they're saying. She listens to me when I talk to her, and I even get a reaction from her when I ask a question. She'll even take direction sometimes. Just a couple of weeks ago, I was doing something in the kitchen and she brought her cup to me. I told her to put it on the counter and I would get her a drink as soon as I was finished doing what I was doing (I think it was laundry, but can't remember for sure). She actually did what she was told! It's little things like that, but they keep happening, so I know I'm not imagining things.

Don't get me wrong. I don't expect to wake up one day and find Syrina to be suddenly "normal." But the fact that she IS learning these things - even when they ARE little things - when I was told that she probably wouldn't ever learn anything... I just can't describe how it feels. I'm proud of her, I'm ecstatic that she's doing it, and it gives me hope for her future. I know she'll never be able to live on her own and will probably live with her father and I until we can't take care of her anymore. But to know that every day won't be a struggle of wills and filled with frustration is a huge weight taken off my shoulders. She might even be able to have something of a "life" when she's older. She has friends now - who's to say she won't have even better friends when she's older? Maybe one day she'll actually learn how to interact with other people. It might not happen until she's 20, but I don't care. What matters is that she DOES learn. I don't care that it took her almost 10 years to figure out how to tell us when she's hungry or thirsty or wants to go outside. All I care about is that she DID learn it.

She's not the only one that's learned things, though. I've learned a lot just being her mother. I've learned about unconditional love. Patience. Gratitude for the VERY small things. I thank God every day that I have her. Yes, sometimes I wish she was "normal" - but not for me. For herself. Because when I'm pushing her down the street and other kids her age look at her like she's some kind of leper, it makes me angry for HER. Not for myself. For her. If she were "normal," people wouldn't look at her like that. But I don't see what they see. I see my "baby." My little girl, who loves almost everybody and smiles almost all the time.

I just wish everybody could see her the way I see her.


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