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. :)

Saturday, July 29, 2006

Leaving School BBQ

To everybody else:

Syrina had her leaving school BBQ last Thursday (July 20). Kind of like a "graduation" type thing, in American thinking. But they don't get any kind of certificates or anything for finishing primary school. However, I did like the way they made a big deal about the fact that not only will these kids not be at school for the summer, they're also not coming back to Sunningdale AT ALL.

It was nice to meet some of the staff members that I hadn't yet met, and to catch up with the ones I already knew. And Daddy came, too.

At first I was afraid that he'd be all antisocial, hiding off in a corner somewhere, but he shocked the hell out of me. Not only did he not do what I thought he'd do, he went so far as to get in the bouncy castle with the rest of the kids!!

For a while there, I followed Syrina around, and the headteacher pointed out that I didn't have to do that: the entire yard was fenced off, so there was no where for her to run off to. I explained to him that I always wondered what she did when she was outside at school. I've always wanted to know what interests her. Does she run around like a maniac or does she find something to look at? Where are her favorite spots to go to? Stuff like that. The answer, strangely enough, was all of the above. There are all kinds of plants and things (which she just LOVES) for her to look at. There's a HUGE area of grass for her to run around on, not to mention the actual play area, where there is pretty much every kind of playground equipment you can think of, just modified to meet the kids' special needs (which I think is VERY cool!!!!).

I was told that sometimes she would run around for a while out there, and then go in this very shady area where there's a lot of trees and bushes, and she'll lay down on the grass and take a catnap. I forget which one it was that told me that - but I know it was either her teacher or the headteacher.

I got the shock of my life when we sat down to eat, though. Syrina's teacher came up to me and asked me, "red or white?" Red or white WHAT??? I asked. The answer? Wine. WINE!! At a school function?!?! It about blew me away. As I said to someone else later that day, where I come from, if it came out that somebody had brought liquor to a school function like that, not only would people get upset, somebody would get FIRED over a situation like that. But here, it's not only acceptable, they don't think anything of it (and then these same people wonder why Britain's got one of the highest [if not THE highest] alcoholism rates in Europe).

If that weren't enough, I made a stunning realization that day. Syrina has friends. I mean Syrina has REAL FRIENDS. There are these two girls. One's named Paula, and for the life of me I can't remember the other one's name (I keep thinking Stacy, but I'll be damned if I can be positive about that). After we'd finished eating, Syrina had ran off into a corner and was looking at something. These two come running up to me, asking me where Syrina is. I told them where I'd last seen her, and they grabbed my hands, telling me we had to go get her. So we did, and they dragged her back to the bouncy castle. I had tried putting her on it when we first got there, but she wasn't interested. I think the fact that it was crowded might have had something to do with it. Bouncy castles are BIG things in this country, so of course every kid wanted to have a go IMMEDIATELY. But this time, with her friends, she was a lot more interested. They sat her down, took her shoes off, got their own off, and between the two of them, tried to jump up and down. Syrina's balance being what it is - not exactly the greatest - she started to fall and then decided to just sit down. But sitting down didn't mean she didn't want to be in on the action. She was content to let her friends do the jumping and she just GOT bounced. But it was the fact that they accepted her on HER terms, and knew what to do with her to play with her HER way. They knew her ticklish spots (okay, yeah, Syrina doesn't have too many spots that AREN'T ticklish) and knew the kinds of things she liked to do. They knew to run with her when she wanted to run. They knew that she liked it when people looked her right in the eyes and made funny faces at her. They liked her FOR her, and totally and completely accepted her as she is. And while yes, they are definitely special needs children like she is, neither of them are on the same level as Syrina. They can both walk, can both do things like use the toilet and feed themselves independently. They can understand and navigate the world around them a million times better than Syrina can. But to them, it doesn't make a difference. To them, she's not Syrina, the severely autistic girl. She's just Syrina to them.

It might sound horrible to some people, but I just never thought she'd be able to make friends like that. I guess it's mostly that I didn't think there would be kids out there that would see past her disabilities and see what I see: the happiest, most easy-going, and absolutely the most loving child in the world. It made me want to hug these other two girls and thank them. Thank them for giving my little girl something I seriously never thought she'd have, which most of us take for granted. Friendship.

Monday, July 17, 2006

Following in Grandma's footsteps

I nearly crapped myself when I saw this. At first, I thought "what did she get THIS for?"

But then I took a look in your home/school diary, and realized you'd MADE it!!!

I don't know how they managed to get you to do it, but my GOD, it's beautiful!!

Or... well... I should say it WAS beautiful, because you made it the week before last, and I just didn't have the time to sit down and post it up on here before now. And I just had to throw it away this morning, because the flowers were all dead and dried up. Frown

Your grandma will be VERY proud of you when she sees this. She's not going to believe her eyes!!! Shocked Being a florist herself, and a perfectionist to boot, I'm sure she'll appreciate it so much more than most people - myself included - would.

You did a GREAT job, sweetie!!! I showed it off to as many people as I could when you first did it, and now I get to show it off to the whole world! Thumbs Up

Saturday, July 01, 2006

Wow... j... just... WOW!

I don't know how else to describe it... it... it's just... WOW.

I can't believe the number of different things you've done in the last week. You started saying "Mom." It wasn't just once... you say it ALL the time now. Especially in the morning. You're always up first - always have been, probably always will be. You see me, and literally jump out of bed (or off the couch), grinning from ear to ear. You grab my arm, jump up and down (still grinning, by the way), saying "Mom Mom Mom Mom." I'm fairly confident it translates into "Good Morning Mom, Glad to see you, Are you going to feed me now?"

Last weekend, I sent Caitlin to the store for a few things, and when she came back I took them into the kitchen to put them away.


I was pulling the box of cereal out of the bag, you took it from me, and put it on the counter!

On Tuesday (I think?), Hayley was over for a while, and you were having dinner. I was talking to her while trying to feed you, and you just grabbed the spoon out of my hand and stuck it in your mouth.


I couldn't believe it! You'd NEVER done that on your own before, even though I'd seen you feed yourself hand-over-hand at school before. If I tried to get you to do it at home, you would always look at me as if you were saying "YOU ain't my teacher!! I'm not doing this for YOU!" But you started feeding yourself that night, and every time you've had something to eat that you need to use a spoon/fork for, as long as I put the food ON the spoon/fork, you grab it and feed yourself.

It's getting to the point where I'm seriously starting to re-think some of my preconceptions about you. I've always thought that you'd be completely helpless - the way you've been for a long time - and that you would need someone to be by your side every hour of every day.

But now... I have to wonder. Maybe you won't be as helpless as I thought. Maybe some of the things I never thought you would be able to do... maybe you WILL be able to do them.

I had to fill out a questionnaire just this morning, regarding what kinds of services I think you're going to need as you get older, and some of the questions I thought I knew the answers to, a week ago. Now I honestly don't know.

But you know what? I kind of like THIS uncertainty. This is a GOOD uncertainty.

I can't wait to see what you grow up into. I've always known that I'll love you no matter what... but now I'm filled with excitement, at the possibilities I see opening up before you that I never thought would be available to you.