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.

Friday, January 26, 2007

I'm so excited! And I just can't hide it!

Come on, sing with me now... you know you want to! *lol*

Okay, seriously, folks... I've got some great, exciting news to tell ya!

I was talking to Tom, Syrina's social worker today. We were dealing with some other issues we've been having with Syrina's taxi driver and his helper. And he tells me that he spoke to the DLA people today.

Apparently they'd phoned him to clarify something regarding Syrina's respite care. And while they were speaking to him, they tell him that they're already typing up the award letter!!!

If they're already typing up the award letter, that means that probably sometime in the next week, we'll not only get IT, but we'll get the back-pay they award us as well!!!!


It's about fucking time! We've been dealing with this for three and a half years. THREE AND A HALF YEARS!!!! The first time we applied was November of 2003. We were told that once Syrina was in this country for 6 months, we could get the DLA for her. It took them another year to deny us based on her nationality. A year after that, we spoke to Tom about re-applying. It took him a good 6 months to gather the papers together and find the files from her original application (his predecessor helped us with the original application and made copies of everything before we sent them off). That was back in like March? April? Something like that.

We still don't know exactly HOW MUCH we're going to be getting. What I posted before was just an educated guess. We have to wait for official confirmation before we know for SURE how much money we'll be getting. But at this point, anything is going to be a big help. For years, we've spend the end of every month so broke we can't even buy bread! (And bread is only £0.28 per loaf... that's how bad it is!) With the DLA on top of everything else, we know we'll at least be able to get through an entire month and not have to worry about going hungry.

Ya know what? That huge crane is right in front of me. I can see the driver messing with the controls to bring down the big hook. It's almost here!

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Tuesday, January 23, 2007

DLA Physician Appointment

Well... it went pretty well, I think.

Syrina was quite cooperative for a change. She wasn't whiny or anything, but I think having been in her wheelchair helped. She's spent most of the day in that thing.

I was asked all kinds of questions. What does she do during the day? Does she have any bowel control? Can she feed herself? When was she diagnosed? What are her seizures like? So many questions I just can't remember them all. I pretty much had to explain Syrina in full detail - from birth to now.

She did something kind of odd - in a funny way - while we were there, though. There was a little examination room off the interview room, with a medical bed and all that stuff in there. She sat on the FOOTSTOOL attached to the bed! *lol* Of all the places to sit!

The doctor said that he'd have to write up his recommendation and send it off to the DLA review board, and we'd have to wait to hear from them. Which is pretty much what I expected. This whole process is very similar to what I had to go through with Social Security in the U.S.

So HOPEFULLY in a few weeks I'll have some very exciting news to post. Fingers crossed, knock on wood, all that stuff. :)


Monday, January 22, 2007

She looks so peaceful here, doesn't she?

Looks can be deceiving.

The evening was going well enough. She was in a good mood when she got home from school, although she was a bit impatient for dinner. She kept trying to come into the kitchen while I was cooking. Although in her defense, I have to admit that I was making dinner a bit later than usual. I was trying to have it ready when Daddy came home (6:15 p.m.).

She ate well enough (okay, maybe that's an understatement, but this IS Syrina we're talking about here!!!), and went into her room to "play."

I noticed she looked a bit tired about halfway through doing the after-dinner clean-up, so I stopped for a minute to change her and put her in some jammies.

She fell asleep, but woke up just as I was about to start vacuuming the living room (which happens to be right off her bedroom). She seemed fine at first - she was even grinning at me from her bed as I was plugging in the vacuum cleaner.

I only had the living room about 1/4 of the way done when I started hearing some strange noises. It sounded almost like the way she cries, but when I looked at her, she seemed to be just sitting on her bed looking at one of her blankets (she likes doing that; she likes the patterns). So I didn't think anything of it and kept vacuuming. Then I heard it again. Louder this time. So I went into her room.

It was her.

She was shaking like a leaf and making noises like she was crying. There were no tears, but the sound was the same. When I asked her what was wrong, she got up out of bed and started walking around. Every time I tried to ask her what was wrong, she'd walk away from me. She wouldn't even let me give her a hug (which she usually DOES do). It went on for about 10 minutes. She had this strange look on her face, as if she was terrified.

At one point, I realized that her teeth were chattering, so I put a cardigan on her (which you can see in the picture). After that, she seemed to calm down.

It's just that even with all her progress, things like this still happen. And I feel so utterly useless when they do. I was in tears, because there was something obviously wrong, but I didn't know what it was, and she couldn't tell me. It's times like this when I would gladly give up 10 years of my life just to know what was wrong so I could fix it.

I'm just grateful that these kinds of things don't happen all that often anymore. There was a time when she'd be like this at least once a day. But not anymore. THANK GOD!! But when they DO happen, I feel about as useful as a square basketball.

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Sunday, January 21, 2007

Attempts to Interact

I just saw the coolest thing!

I'm sitting here in the living room with my laptop on the coffee table, and the Terror Twins (Lexi & Chloe) were sitting on the floor next to me, playing with a couple of small balls.

Syrina walked up to them and stood in the middle of the two of them, watching what they were doing. She then bent down and tried to interact with the two of them, but they were only paying attention to each other, not her, and didn't realize what she was doing. After a few seconds I could see her change her mind and she walked into her bedroom.

That's the first time - EVER - that I've seen Syrina actually attempt to interact with the two of them, though! Even though it didn't quite work, I could see her trying to do it. And to be honest, she didn't wait very long for them to figure out what she was doing. If she'd tried a little harder, they might have "gotten it" and let her play with them.

But still... it's a start! If she's going to try once, who's to say she won't try again? And eventually, she might actually be able to get them to understand that she actually does want to play with them!

I just thought it was the coolest thing... and since I had the laptop open ANYWAY.... I thought I'd write a post about it!


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Saturday, January 20, 2007

Birthday Party!!

I wrote this on Word last night... for some reason my computer wouldn't connect to the internet. I tried like 3 or 4 times, but it just wouldn't do it. *grumble, grumble*

We had the birthday party, as planned. But wouldn’t you know it… Syrina was too tired to be bothered with anything! I don’t know if she’s still not feeling well, if she’s having a hard time adjusting to her school schedule after having 2 days off, or if it’s just that she’s had a busy couple of days at school. Maybe it’s a combination. She DID have a busy couple of days, though… Thursday was her birthday party at school, and today (Friday), her friend Tommy had a birthday party. Tommy has Down’s Syndrome, and has been in her class since Sunningdale (as were most of the kids in her class right now). I think there might be a pic or two of him on her photobucket page.

I made an “experimental” cake. See, I’d bought a cheap-o store brand box of brownies just to try out – simply because it was less than half the price of the Betty Crocker ones (you have NO idea how excited I was the first time I saw Betty Crocker Brownie Mix!!! *lol*). They weren’t all that good… but on the side of the box was a recipe for a brownie cheesecake! That sounded SO yummy that I just HAD to try making it. And since Syrina’s and Blake’s birthdays were coming up, I figured it would be a perfect time to try it. It went over like a charm. Even Caitlin’s friend Natasha – who was here for the party – said that it was the “best cake [she] ever had!” *lol* And even as tired as Syrina was, she sat up long enough to have a piece of cake… and then went right back to sleep.

She was too tired to come and help blow out the candles, though. That’s why there’s a blurry (sorry ‘bout that) picture of her lying in bed. She couldn’t be bothered to get up. Caitlin even asked her “do you want to come blow out your candles?” Syrina shook her head “no” at her! *lol*

Vicci came back for the party. Chloe had a great time “doing” her hair. *lol* She mainly just brushed it and put little ponytails in it, but she sat here on the couch with her for a couple of hours just doing Vicci’s hair.

Grandma sent birthday cards for both Syrina and Blake, with $20 each in them. They arrived today – perfect!!! – so I took the money into town, exchanged it for ££s, and went shopping for them. Blake got some mountain climbing gear, and Syrina got a cute pair of boots.

I really wanted to get Syrina a nice warm pair of pj’s for her birthday. She has one pair – but ONLY one – and she really could use some more. The funny thing is, this kid has pj’s coming out the ying-yang, but only ONE pair of WARM pj’s. Unfortunately, I couldn’t find any in her size. Oh, I found warm pj’s alright… but only in the terror twins’ (Lexi & Chloe’s) sizes (and they happened to be on sale – 2 for £6, so I did get them for the TT). So I wandered around, trying to find something nice for her, and that’s when I saw this sweater. It’s “SO in fashion” right now, and I thought it would look absolutely adorable on her. Not to mention the color – brown – which means that even if she happens to drool food on herself, it’s not going to be all that noticeable – if at all. And it matches the boots perfectly! Now she just needs a nice pair of leggings and she’ll look like a fashion model!

Methinks I might put her in her new sweater and boots for her appointment on Tuesday. Why the heck not, right? :)

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Thursday, January 18, 2007

12th Birthday!!!

It's Syrina's 12th Birthday!!!

It's been kind of uneventful... unfortunately Mom & Dad can't afford to give her a birthday party... YET. We get paid tomorrow, though, so we're having pizza & cake for her after school tomorrow.

She did get a mini-party at school today, though. She had cake &
food with her friends. The school sent home pictures of it. Apparently she had a good time. :)

Aunt Vicci came over at dinner time, and brought her a little present. Unfortunately, Syrina being the way she is, it's hard to buy presents for her. There isn't a whole lot she's really interested in. And it's not like she can tell us what she wants for her birthday, either!

But Maltesers are one of the few sweets she really DOES like. (She's not all that big on sweets - she'd rather have fruit. Seriously.)

As you can see, she was ready for bed early tonight. She hasn't been feeling all that well this week. She stayed home from school Tuesday and Wednesday. Monday she slept all day at school and woke up to have a seizure. :( Not good. So I kept her home Tuesday - but I had to take her out with me when I took her sisters to and from school. Daddy was at his first day of college!

She did remarkably well. The hardest part was getting her in her wheelchair. (It confuses her until she actually gets her butt in the seat - THEN she knows what we're trying to do.)

She even kept her hat on while we were out!! This kid HATES hats - and anything else that goes on a person's head. But she never messed with it while we were out. It wasn't until we got back home and IN the house that she pulled it off and tossed it on the couch! *lol*

Wednesday, I thought she'd be okay going back to school. She was still asleep when I went in the kitchen to make breakfast, but I figured she'd wake up as soon as she smelled the toast (which is what usually happens). Nope. So I go in her room and wake her up. She looks at me like "what do you WANT?" So I show her the food. No response. WHAT?! Usually, as soon as she sees food, she literally BOUNCES out of bed. So I tried pulling her off the bed. No go. She yanked her hands out of mine and lay down... and went back to sleep.

This is EXTREMELY unusual behavior for her... so I figured, if she's THAT tired... she can stay home again. (Daddy was off college that day, so I didn't have to drag her with me.)

So today was her first day back at school since Monday. Apparently she had a good day, but I think it wore her out. As soon as she had dinner, she looked ready for bed. So I changed her and put her in her jammies... and THEN I thought maybe I should take a picture of her ON her birthday. So she ends up with a birthday picture in her pink fuzzy jammies. Oh well... better than no pic at all!!!

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Friday, January 12, 2007

MORE D.L.A. progress!!!!

Well.... ya know how I said "it's all just a matter of time"?

Things are progressing quite quickly. The phone rang this morning - Hubby was out at an appointment with the Job Centre regarding his going to school next week, so I had to answer it. The woman actually asked if *I* was Syrina!!!! LOL!!! I told her, "Um... Syrina doesn't speak." So then she asked for Hubby, and I told her that he was out. When she said where she was from, I told her "Well, I'm the mother, you can talk to me!"

They want me to take her to see the doctor on the 23rd. I was under the impression - from what Hubby said - that the doctor would be coming here. But it's not a big deal. The appointment is set for 10:45 a.m., which means I can easily get the other 3 to school, back home, and get her wherever we're going (not exactly sure yet, they're going to send me all the details in the mail). I'll just keep her off school until after the appointment, and I can take her back to school on the bus afterwards.

They're moving along with this a lot quicker than I had thought. But that's a good thing. I was really hoping that they wouldn't drag this out. Back when I first applied for her social security benefits, it took them over a year to deny her. Then I applied again a year (or two?) later, and it took them 6 months to get to the point where they'd even send her to a doctor. Once I did that, though, it wasn't long before they finally approved her. I'm hoping it'll be a similar situation with these DLA people.

Oh... that's another thing. Hubby was doing some research on what they pay for DLA and all that, and found out that not only will we get more money from them, but we'll get more money for her on our Child Tax Credit benefit as well, just because she's disabled. If everything goes through as it should (and I can't see any reason why it wouldn't), our monthly income will almost double!!!

That forklift is so close I can almost see the driver!!!

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Wednesday, January 10, 2007

News on the DLA front!!!!

Hubby just came through the living room practically jumping up and down. He got a phone call from the Disability Living Allowance people - after months and months ... and months ... of waiting.

Apparently they've changed the law regarding who can and can't receive Disability Living Allowances. Specifically for children's cases. She was being denied due to the fact that she's actually American and not British. But now, it doesn't matter what nationality the CHILD is. What matters is the nationality of the person claiming FOR the child. And since Hubby is the only one of us who CAN claim anything in this country, he's the one claiming for her. All he has to do is go into town tomorrow, send a photocopy of his passport along with a written statement as to HIS nationality to the DLA people, and they're going to send a doctor out here to see Syrina. Once the doctor sees Syrina, there's no way in h-e-double-hockey-sticks that they can possibly deny her. It's all a matter of time.

(I said to Hubby earlier that, in a way, I almost hope that this doctor shows up when she's trying to eat something... so he/she can see just how INcapable she really is. As soon as anybody sees the way she is while she's trying to do something as mundane as eating, they realize just how severe her disabilities really are. It's something we take for granted, but something she can't do on her own at all.)

The big question now is how long are they going to take to get all this done, and how far back are they going to back-date her payments. Just like social security in the U.S., DLA will back-date a claim for disability. But I don't know if they'd be willing to back-date it to the first time we submitted a claim (which is what social security in the U.S. did - I ended up getting nearly $10,000 in back-dated benefits, which came in really handy for paying off certain bills so that we could move out of the homeless shelter we were living in at the time)... or if they're only going to back-date it for a certain amount of time. Like with the Child Tax Benefit we get... it took them nearly a year to completely settle our claim, and when we were finally fully approved, they backdated it for 3 months. Even though we'd been waiting a lot longer than that, they were only willing to back-date it for that long. Technically it's the same governmental body dealing with the DLA as with the Child Tax Credit, but I don't know if the same rules apply to all forms of benefits or not.

Either way, that means that we're going to be a lot better off. No more of this nearly starving at the end of the month because we didn't have enough money to get through. And when the kids need something, more than likely we'll be able to get it for them. We might even be able to afford to go out and DO things with these kids!!! What a concept!!!!

I can't even put into words what a relief this is. After so long of trying to be careful with our money; trying to make it last an entire month but never succeeding. After all the stress and conflict never having enough money has caused. It's like I can see a giant forklift coming towards me, ready to take the weight of the world off my shoulders. It hasn't quite gotten to me yet, but I can see it coming and that in itself is a relief.