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. :)

Sunday, June 18, 2006


I couldn’t believe it. Part of me STILL can’t believe it. My head has been spinning round and round since it happened.Shocked

You said “Mom” yesterday. You said it, and you KNEW you were saying it. You KNEW exactly what it MEANT.

I was outside, watching your sisters and talking to the neighbors. You had come to the gate, and seemed really happy to be near me. You smiled and laughed and bounced up and down, making a “mmmm” sound. So, just for the hell of it, I said to you, “say Mom.”

You said it.


YOU SAID “MOM!!!!!!!!”Blinking Heart

I immediately burst into Crying tears, and you pulled back and looked at me funny – as if you were trying to ask me what was wrong. I told you “these are happy tears, not bad tears.” I told you exactly what made me cry – that I had never thought you’d say it and know what you were saying, and that you hadn’t said something when I’d ASKED you to say it since you were a baby, since before your autism started becoming apparent.

The neighbors thought that something was wrong when they saw me wiping the tears off my face. You had come out of the house with me, over to the garden wall where they were. When I told them what you’d said and done, they got nearly as excited as I was. You soaked up all the praise, and went back in. I seriously think you went out there just so I could brag on you.

The thing is, this wasn’t the first time you’d said “mom,” but it was the first time that I could be fairly sure that you knew exactly what you were saying. You’ve said “mom” several times over the years. But it always seemed to happen in the middle of a “hum,” and I just couldn’t be sure if you knew what you’d said or what it meant. I always HOPED you knew what you were saying, but I just couldn’t be SURE.

But saying it when I ASKED you to say it… and I could just tell from the look on your face that you knew what you’d done. It’s hard to explain to other people, but I know from watching your face at least some of what you’re thinking. Like this morning. You were trying to get me in the kitchen, and then you gave me a hug. I said to you, “I know… you love me AND you’re hungry. Right?” You smiled and giggled at me, telling me that I was exactly right. It’s things like that, that I have only learned over the years. It’s not something that just comes to me immediately. It’s been trial and error, and years of experience with you. I’ve always known that in your little body is the mind of a person that would absolutely love to communicate with other people, but you just don’t know how. You want to make your feelings known, but don’t have the skills necessary to do it. People are always asking me how I know… and it’s hard to explain. It’s not like I’ve got ESP or I’m psychic or something… it’s from raising you for 11 years, and seeing how you’ve changed and matured over the years. But I KNOW. Your dad does, too. Your grandma even sees it, although she doesn’t recognize certain looks and gestures like I do, but that’s because we’ve lived in another country for the last 3 years. You’ve changed so much in such a short time that you’re like a totally different person from who you were 3 years ago.

I just can’t put into words how it makes me feel to know that you KNOW what the word “Mom” means, and that you can say it when I ask you to.

Of course, I realize that it doesn’t mean that you’re going to say it EVERY time I ask you to.

There are times when you are a COMPLETELY “normal” child. Attitude and all. Lol

Thursday, June 15, 2006

It's mind-boggling.

It's absolutely, utterly, and completely mind-boggling. Surprised

The more I let you play outside with your sisters and their friends, the more of YOU I see emerging. I understand now what your teachers have been talking about. They tell me how you've been with the other kids in your class. About how you're suddenly making eye contact with them, and trying your very best to interact with them. It's almost like you WANT to play with them, but you don't know how, and you don't even know how to make your feelings known.

Intellectually I've understood this, but that's completely different than seeing it first-hand.

Obviously, you were playing outside again today. You came running out of the house - somebody had left the gate open, but luckily I was standing right there by the front door - and immediately ran towards the other kids. I ran and got you, and then took you for a little walk down the street and back again. You came into our garden, and saw Jack standing by the wall between our garden and theirs. You looked at him, and you had this look on your face. It's hard to explain in words, but I could just tell that you wanted to go in there and see him. Jack's absolutely in love with you Blinking Heart - he'll just walk in the house to come see you when he wants to, it's that bad. And I think you've picked up on that. You seem to know things on an instinctive level, almost like an E.S.P. or something. You've been like that with me your entire life. YOU know when *I* need comforting, even when I don't say a word. You seem to know when somebody really likes - or loves - you, and you respond accordingly.

So I walked you over to their gate and let you in. You walked over to Jack and looked at him a while, blurting of course (the only time you DON'T blurt is when you've got something in your mouth or when you're sleeping! Lol ). Then you walked into their house and... as usual... went into Charlene's room. You really seem to like it in there. I think it's for the same reason you like being in MY room. I think it's the bed. I'd be willing to bet money that you'd like to have a big double bed for yourself. If you had room for one in your bedroom, I'd try to get you one. (We can't afford to buy one outright, but I'd be willing to bet there would be some way to get you one.)

You were in and out for most of the evening, getting spoiled (you ALWAYS get spoiled over there!) and flirting with Daniel again. Girl Winking About 8:30, I decided to take you guys in, because I wanted to get Lexi in the bath before putting her to bed.


It took me AND Charlene to get you in. You absolutely, positively, did NOT want to come in. It took BOTH of us telling you that, as long as the weather was good, you could come back out and play tomorrow before you RELUCTANTLY came in the house. And when I was bringing your sisters' toys back in, you kept trying to sneak back out the door! Tongue Out

I've never seen you like this. Shocked I've never, in my life, seen you so adamant to spend time outside with other people. Especially when it's your sisters. You usually seem to prefer it when they're OUT of the house, AWAY from you. If they go out for the day - like they did last week - that's when you finally venture out of your room and try to spend time with me. It's almost as if you feel that when they're here, either you don't want to be around them, or you don't think I'll spend the time with you that I do when they're NOT here.

But today, you wanted to be out there, in the thick of things, along with everybody else. And honestly, if it hadn't been so late in the evening and if I hadn't needed to get Lexi in the bath, I probably would have let you stay out there a little longer. Thumbs Up

I think this is a good thing... but it's just so WEIRD! You're changing bit by bit, every single day. You're maturing and becoming a totally different person. A wonderful, loving, outgoing person. But it's not what I'm used to, so it surprises me. It boggles my brain.

But I'm so very, VERY proud of you. Angelic

Monday, June 12, 2006

Surprises all 'round!

You've just been surprising me left and right today.

First, you made it QUITE clear that you were hungry. I don't know WHAT you did at school today, but you sure worked up an appetite!!! You were messing with the bread, trying to get some out. So I gave you the chocolate bar that I'd bought for you on the way home from picking your sisters up from school. You had that, came and pinched me again, and pulled me into the kitchen, grabbing at the bread again. So I gave you an apple. You ate that, and the next thing I know, you come waltzing into the living room carrying 2 slices of bread. Yup... you finally figured out how to get the darned bread open! Lol

Later, you were out in the garden, and I'd made your dinner (nothing fancy tonight, just a sandwich and some cheese crackers). I called to you when it was done, and asked you to come into the kitchen. You looked up as soon as I said your name, and came right to me. That was the first time... EVER... that you specifically followed directions!!! Another one for the record books!!! Smile

Then, even later, I was out in the front garden talking to May and keeping an eye on your sisters at the same time. You decided you wanted to come out, too. I didn't have a problem with that, but I wanted you to stay in the garden, because you have a tendency to run off down the street, and I gotta tell you... you run FAST!!! You'd gotten out of the house at one point, because Lexi forgot to close the gate behind her, and by the time I'd caught up with you, you were more than halfway down the street!!!

At one point, you'd gotten out of the garden, but you ran down to one of the neighbor's houses and stopped, because a couple of kids were in the sidewalk, fixing their bikes. Your turned around, ran back to where we were, and then did it again. I figured okay... fine. If you're just going to go between here and there, then that's fine. But after doing that two or three times, you finally figured out how to get AROUND those kids... YIKES!!! Shocked Lol

Well, Charlene took you into their garden, and you ended up going in the house. You were going in and out pretty much all evening. But since they have a gate in their garden, it was fine, as you don't know how to open any doors or gates.

You surprised the hell out of them, too, though. They didn't know that you liked books, and you sat on Charlene's bed, putting a book in your lap like you usually do. Anybody who didn't know you would swear you were reading the darned thing! Nerd

At one point, Charlene was in there doing some cleaning up, and she'd put the stereo on. Apparently you really liked the song she was playing, because you started smiling and dancing around.

You didn't want to come in at 9:00, when I took your sisters in. I had to literally drag your butt in the house. And then, as I was cleaning your sisters up for bed, you kept coming into the bathroom, obviously wanting something from me. I can tell by the look on your face when you want something. I got your sisters to bed, and asked you what you wanted.

You wanted to go back outside!!!! Shocked You don't usually want to be out there THAT long. Don't get me wrong - you've always liked the outdoors, but after a few minutes you've usually had enough. But I told you what Charlene said when I brought you home. You can come out there tomorrow, when I let your sisters play outside, and you can go back over to their house if you want. Charlene even said she'd take you for a walk, which I'm sure you'll enjoy. Of course, Charlene will be the only one walking. Lol You, as usual, will be running.

Monday, June 05, 2006


It embarrasses me how much I do this, but I've done it yet again.

I forgot that you were supposed to be at respite care this week. Embarrassed

Although, in my defense, it's not just that I forgot... it's that I didn't think it could possibly have been this week. The last time you went was May 5th, and it's usually 6 weeks between visits, and I know damned well that May 5th wasn't 6 weeks ago. So it shouldn't have been this week.

I had no way of getting you there anyway. This is our "bad" week - we're flat broke. I had to use the last £2.91 in the bank just to get you and Chloe something to eat for lunch today. It's a good thing Chloe loves toast... she's going to be living on the stuff until Friday.

But since we're so broke, I couldn't even take you over there on the bus. It's a good thing your Dad talked to them when they called, though... because he explained the situation to them, and they came and got you with the van tonight. All I had to do was pack your suitcase. Thumbs Up

I had to laugh when they got here, though. You had your big suitcase, and the lady (I can never remember her name, even though I see her there every time I take you over there) was by herself, so I decided I'd walk you to the van with her (she'd parked down the street because she had such a hard time finding our house - no surprise there, everybody gets lost the first time they come to our house). Well... all 3 of your sisters decided they just had to come, too. And they decided they had to climb IN the van to say goodbye to you. Not only that, but they were still finishing their dinners, and brought their plates with them! Lol And you, being the sneak you are, managed to snatch Lexi's potato waffle off her plate without any of us noticing!

You did something that surprised us all, though. I was climbing in the van to give you a kiss goodbye, and Caitlin was by the window, waving goodbye to you. Before I manged to get to you, you'd WAVED BACK at her!!!!! Shocked You haven't waved hello OR goodbye to anyone since you were a baby, before you were diagnosed with the autism. But I suppose I shouldn't be all that surprised. You and Caitlin have always been very close, even when SHE was a baby. She always understood in an instinctive way that you were different, and always acted like the "big" sister to you. Even when she was only an infant, barely able to walk and say only a few words, she would look out for you. If you were doing something potentially dangerous - like getting too close to the stairs - she would come running to me and try to tell me. The one time you got out of the apartment we'd lived in back in '98 and '99, she tried to tell me. She wasn't very successful at it, but she TRIED to tell me. And nowadays, you seem to know that if your Dad or I aren't in the room, you can go to Caitlin if you need something (like a drink, for example). I just thought that was REALLY cool that you'd waved to her. I just wish I could have seen it. Nerd

I will miss you, though. I always miss you when you're gone. But knowing that you're THERE is a slight comfort. I know that they take VERY good care of you while you're there. And because they have so many staff members, they're able to take you out and do things with you that I ust don't have the resources or time to do. And even when you're just stuck in the house, when the weather's warm, they have that HUGE, absolutely GORGEOUS garden that you can play in. All that room to run around in, and all those plants to look at. You've always liked "green" things. Even when you were 6 months old, if you were in your walker, you'd push it over to the window and just sit there, staring at the trees for what seemed like forever. That's one of the reasons why I've tried to start growing some things in the garden. Not just to make it look nice, although that's part of the reason, too. But becaus I know you like to look at plants and flowers, I thought that it would give you something to attract your interest while you're out there.

But you'll be home on Friday, and that's the day we get paid. So we'll be able to have something nice for dinner, and I'll be able to sit down and talk to you about your visit. You don't exactly engage me in an extended conversation, but you do react to what I say. So when I ask you if you had a good time (which you usually do!), I'll know by your reaction if the answer is "yes" or "no." Flowers 2

Sunday, June 04, 2006

Modesty and other teenager-y stuff

It's strange how downright "normal" you can be sometimes.

Recently - I'd say in the last 6 months or so - you've become more and more modest. You don't want your Dad changing you... like... EVER. You're not exactly happy about me changing you, either, but you don't cry and fight me like you do with your Dad. You just try not to let me see your "stuff" any more than I absolutely have to.

And bathing you has become the experience of a lifetime!

Again, you don't want your Dad touching you. You scream and cry if he tries to give you your bath. When I started taking over (your Dad does your sisters now, and I do you), you didn't scream and cry at me, but you weren't exactly co-operative with me, either. And bending over like that was absolutely killing my back.

So I came up with the idea of taking you in the shower with me. It solves a lot of problems. First, it saves on water consumption and gas to heat the water. Second, it's easier on my back. No bending required. And third, I thought that maybe if you saw that what I do to you to get you clean is the exact same thing I do to myself to get myself clean, that you'd be able to deal with it easier. I didn't expect you to be happy about it, but I thought maybe it'd be easier for you to deal with. And I was right.

But damn, if you're not the most un-co-operative person in the world!

We just had a shower a little while ago, and you kept pushing me away, like you didn't want me to wash you. And I said something to the effect of, "I wouldn't do this if YOU knew HOW to do it yourself!" and you looked at me like it was a totally new revelation for you. As if you honestly thought that I do all of these things for you because I want to, and because I don't want you to do anything for yourself.


It would literally be an absolute dream come true if you were able to do things for yourself, like using the toilet, feeding yourself, and washing yourself. I don't LIKE treating you like a baby. You're 11 year's old, for Pete's Sake!

"Normal" 11 year old's don't have to wear diapers, be spoon-fed, or need other people to wash them.

But you know what? I TOTALLY and COMPLETELY understand why it bothers you. I was the same way when I was your age, and I was "normal." At least I think I was normal. Who the hell knows. Who the hell knows what "normal" is any freaking way.

It's just something I found surprising. So many times you are like a baby in an 11 year old's body, that I just don't think that there might be a part of you that is like every other 11 year old girl in the world.

And while it might make life just a tiny bit more difficult for us, I'm glad you're at least a little bit "normal."

Every little bit counts. Smile

Friday, June 02, 2006

It just never ends.

I felt so bad for you this morning. As if throwing up all over yourself last night wasn't bad enough, I woke up this morning to find that you'd had diarrhea. And I only had about 4 hours of sleep, so I doubt it had been that long since it happened. But regardless, it was nearly all over you. All the way up your back, and down to your knees. Sick

So you had to have yet ANOTHER shower. (Thank God we actually HAVE a shower now, though... I'd hate to think how difficult it would have been to get you clean if I'd had to give you a bath!)

I think the diarrhea is what caused the throwing up, though. You have a lot of the same problems physically that I've had - like gas. And I know that sometimes I get gas so bad that I feel sick to my stomach, and then I get diarrhea like crazy. But then, once it's over, I feel normal again.

I'm just glad this happened now, when you were already off school for the week. I'd hate to think what would happen if this had happened on a school day. You'd probably end up missing school for that day, and you would absolutely hate that. Frown

Edited, 11:30 p.m.

You had a really good day, aside from the very beginning. Once we got you all cleaned up and dressed, you had breakfast, and I noticed you were eating it and enjoying it a hell of a lot more than you had your dinner last night.

After getting you a drink of juice, you went and sat in the bedroom with your Daddy for a while. For once, you actually just sat there with him instead of making a mess, like you've been doing lately!

I had loads of laundry to do because of your tummy problems, and even though I had only had about 4 hours of sleep and was REALLY tired, I figured I'd get that done and out of the way before I let myself lay back down. I managed to get everything from your room washed and hung out on the line by 2 p.m. Considering that that consisted of 4 loads of laundry (well, 3, but one of them I had to wash twice because it had all the puke on it), that's not too bad.

You were really insistent this afternoon, though. You were in the kitchen and came into the living room... walked right up to me and pinched me - HARD - on the arm. I yelled "Ow! What?!" and you bent over, picked up your cup and handed it to me.

In other words, it was "Hey! Mom! I need a drink!"

But sheesh. Ya didn't hafta PINCH! I would have understood if you'd just handed me the cup!

I had to laugh at you a little later, though. You found your way outside - which was just fine with me, it was an absolutely gorgeous day out there. I knew you were out there, even though I didn't see you - I had the back door open and could hear you. I had gotten up to switch the laundry over and make you and your sisters some lunch, and that's when I saw you. You were all the way at the bottom of the garden, by the gate, sitting down on the ground! Lol

The more I thought about it, the more it made sense, though. You have always loved being outside, even if you don't actually DO anything out there. You just like BEING out there. And considering just HOW nice it was today (not a cloud in the sky, and so warm I was sweating at some points), I could understand why you'd just sit down and enjoy being out in the fresh air.

But then you laid down and fell asleep!!!! Shocked

That's going just a little too far. I was busy with something at the time, so I asked your sister to go tell your Daddy what you were doing, and he came out and woke you up and made you come in the house. It was kind of a good thing, though. You were enjoying the fresh air so much that when I'd made lunch, you refused to come in the house and get it!

Now THAT'S bad... when you're enjoying being outside so much that you won't come and get FOOD! Open Mouth

Thursday, June 01, 2006

I should have known

It occurs to me now that I should have realized something was wrong, but I really just didn't think of it.

You didn't finish your dinner. At the time, I thought that maybe you had stolen some of your sisters' dinner - or, as sometimes happens, that they had GIVEN you some of their dinner. I thought maybe you'd just had enough to eat. It doesn't happen often, but it does happen.

You didn't even try stealing Daddy's and my dinner tonight. You came and looked at what we were eating, but you didn't try stealing it.

And then when Caitlin came home, she tried to give you some of her dinner, but you didn't want that either.

And still it didn't occur to me.

But then, after Caitlin disappeared into my room and your sisters fell asleep upstairs, it happened.

You threw up all over your bed.

I got it cleaned up, got you in the shower for a quickie clean-up (heck, you needed a shower anyway), and sat you down on the couch with me. I told you I wanted to be able to keep an eye on you, in case you started feeling sick again.

Luckily, that hasn't been the case - at least not yet. You did wake up at one point and sit up, letting out a few stinky burps, but you haven't gotten sick again.

But I should have realized that since you weren't eating, something was wrong. That's usually how it goes. But then again, you DID eat. Just not that MUCH.

Ah well. It's not like there was anything I could have done for you anyway. I don't have anything that says "keeps puke from coming up."



I still find it amazing that, while you have almost no communication skills yourself, you seem to understand almost everything I say to you.

I call you, and you come to me. I tell you that dinner's ready (or breakfast or lunch), and you go sit in "your spot."

I tell you I love you, and you smile at me - and most of the time, either hug me or kiss me.

I say good morning to you, and you smile, jump up and down, and kiss me.

When I'm vacuuming, and you're in my way, you move when I ask you to - and even sometimes BEFORE I get the CHANCE to ask you to.

If you're looking for something (food, drink), and I guess which one it is, you do your best to let me know that I've guessed correctly (usually by jumping up and down excitedly), even when I don't have said item in my hands.

You do more to let your feelings known than your Daddy does - and he doesn't have the difficulties you do!

It's funny how people automatically assume that my life is harder having you in it. They just don't understand that while yes, you are disabled and can't do very much for yourself, you're actually the easiest of my children to deal with. As long as you've been changed, fed, and have a drink, you're the happiest, go-lucky-est child I've ever known. You don't fight with anybody, you don't mess things up on purpose, you don't purposely misbehave (well, usually - you have your moments, but I don't exactly expect you to be a perfect little angel). I hate to say it, but there have been times, when your sisters have been at their worst, when I think about how much easier my life would have been if I HAD stopped having children after you, as my entire family wanted me to.

It still boggles my brain that they wanted me to keep having abortions, just on the off chance that any of your sisters MIGHT be like you. Talk about STUPID!

And even if they were, so what? You are the happiest, most loving child I've ever seen. You have a smile for everyone, and the tiniest little things put a smile on your face. You hardly ever whine, and when you do, you've got a good reason (sometimes I don't know WHAT that reason is, but you always have one - it just takes ME a while to figure out what it is). Everyone who's ever met you - aside from that little b*tch that your sister calls a "friend" - absolutely adores you. And why shouldn't they? You are a unique individual, but you so obviously have a big heart and love everybody. All the kids in your class love you... and don't get me started on the staff at school! You've GOT to be one of the "favorites," even if they don't want to admit it.

You are an amazing person. You've got all these difficulties, but it never seems to get you down for long. You can't talk, but you communicate in your own way - and, might I add, quite well, too. Anybody who's known you for any length of time has figured out what certain gestures and facial expressions mean. You are happier than I've ever been in my life.

I wish I could be more like you. Now how strange is that? But you know what? It doesn't seem strange to me. You have strength, an inner kind of strength that only those who know you best would be able to see.