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AandO

May 2013

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KINDERKIDS

Apr 19, 2012 06:38pm (EST)

Olivia's kindergarten testing was last Friday. I went into it knowing she wasn't going to show them all that she can do at home. She just doesn't 'perform' as well as school as she does at home. And, while frustrating, it is what it is.

So we headed in and about three seconds after she'd been led away from me to the other side of the room and I'd settled in to fill out paperwork I heard her give out a cry of dismay and heard the pitter patter of terrified little feet.

She was on the verge of hysteria because a MALE teacher had tried to take her into the hall to evaluate her physical abilities. She wouldn't calm down. She held on to me with the strength of an octopus, all suction cups at red alert.

Finally, the principal suggested I go with Olivia to continue the testing. This was after offering to go with O herself, offering to have another teacher go. No, all those suggestions were met with a steely stair from Olivia and a tightening of her tentacles around my neck.

I shadowed her for the rest of the testing.

She did...okay. She wouldn't speak very loudly even though that very morning she announced to our entire house (all three of us not including Olivia) that she was wearing her hair in piggies. Tom heard her three room away.

Sigh.

Then it ended and I filled out paperwork while Olivia shoved three chocolate donuts down her throat, washing them down with the juice from two juice-boxes.

We got the notification in the mail yesterday that upon evaluation Olivia will be attending KinderKids next year. This is a five-day a week, half-day program.

We're happy with this placement. It will allow Olivia to continue to receive therapies, to continue to learn the social skills necessary to make it in school while also pushing her just a little harder academically than preschool has.

In the end, I just wish she'd come out of her shell even a little and show them the shining, amazing little girl she shows us.

But...perhaps that will come with maturity and comfort in her environment.

I hope.

And because I love these pictures...since she stopped pulling her hair out (praise the Lord!) we can braid it as well as put it in piggies. I love, love, love this. And so does she. Just this morning she announced to me, "My hair is driving me crazy, will you put it in a pony?"

Braided facing front

Braided

Posted by AandO | Comments: (5) | Permalink

APPEARANCES

Feb 15, 2012 01:36pm (EST)

As Olivia's hair continues to grow out (I BRAIDED it two nights ago, it was awesome!) I see her becoming this little girl, this beautiful little person who is taking on the world.

When we first got O's diagnosis, her pediatrician said that later in life, it will be up to Olivia to disclose her diagnosis, that at some point, people aren't going to be able to tell by looking at her that she has 5p-.

I have mixed feelings about that.

On the one hand, I'm glad that she looks typical because society can be cruel to anyone who looks too 'different.'

On the other hand, I don't want to deny who she is and what she's overcome. She's worked damned hard to get where she is, what with the low muscle tone and the compulsion to pull her hair out. Here she is, five years old, walking, talking, running, laughing and wearing BRAIDS in her hair.

I didn't realize that moment of truth about her syndrome would come quite so early, though.

Since we got the 5p- diagnosis, I've been up front and open about it with people we meet. I want them to understand what Olivia faces, I want them to see her for the super hero she is.

I posted pictures of O's braids on F-Book a couple of nights ago. I posted the pictures on both my own page and on the 5p- page.

I got lovely comments on how beautiful she is and how amazing her hair looks.

But then I got a comment that sort of surprised me. It wasn't an insulting comment, it was a confused comment. It was from a fellow 5p- mom. She apologized for asking as she was new to the support page but wondered if Olivia did actually have 5p-.

See, there are some commen physical characteristics among those with 5p-. The kids often have wide-spaced eyes, large mouths, low-set ears. Olivia doesn't have these exaggerated features. But she's got 5p-. We have the genetic test results to prove it. She's also got the universal low muscle tone, the cat cry when she was an infant, some of the slightly OCD behaviors.

I wasn't offended by the mom's comment, though. I'm ashamed to admit this but I was actually flattered. See, I shouldn't have been though. Because all of these kids are beautiful. THey are. And I shouldn't be thrilled that my child is beautiful in a more 'typical' way than most 5p- kids.

So there is my confession of vanity even where my kids are concerned. I had to get it out and face the music.

Braided big

Braided facing front

Posted by AandO | Comments: (2) | Permalink

IMAGINARY

Jan 24, 2012 03:04pm (EST)

The other night at dinner Olivia suggested that we pretend her little brother was sitting at the table with us.

Now...lots of kids have imaginary friends, or heck, even imaginary brothers, right? No big deal. We went along with it and 'Sebastian' ate dinner with his big sisters.

Please don't ask why we have five chairs around our table when there are only four of us, because I don't know. We just do. And I'm so glad because if we didn't, Sebastian wouldn't have had anywhere to sit. Whew!

I love that O's at the imaginary stage. She pretends everything these days. She also carries around a book at all times. Sometimes it's her Barbie Princess Charm School book, sometimes it's the Garfield and the Haunted Diner flip-book. It doesn't matter to her what book she's carrying, she just needs one to stop every so often and 'read' it. My girl so desperately wants to learn to read. I honestly believe that she will, it just might take longer for her than most other kids her age.

But what else is new, right? It took O longer to sit, to crawl, to stand, to walk. Reading is no different. She'll do it, but in her own time.

And I'm okay with that. In the beginning I wasn't sure I'd be okay with it but time has a way of preparing you for things to come.

And for the record, there will be no Sebastian. I just had my Mirena IUD removed and replaced with a shiny new one. We're good for another five years of baby-free living. And by the time this one has to be removed? I'll be a ripe 46 years old. I'm pretty sure I'll be on the verge of menopause at that point, right? Right.

So imaginary brothers can come to dinner all they want but real brothers? Those guys live in Huntington and are 28 and 23 years old, thank you very much.

And because she's so cute and her hair has grown so much...check out Miss O, the one who doesn't pull her hair out. I know, right!?!

O's Hair front

O's Hair back view

Posted by AandO | Comments: (4) | Permalink

POTTY UPDATE

Jan 06, 2012 09:01pm (EST)

So, we've made it to the end of the week and...Olivia went four full days at school, three hours a day, mind you, without a potty accident.

Okay, okay, so she pooped a few times in her pants at my mom's house, but we expect that (she seems to be better able to 'go' while standing. We usually catch her and put a Pull up on her or she will actually ask for one so she can poop.)

But the biggest thing about the going to the bathroom at school is the fact that she's TELLING her teachers when she has to pee.

See, Olivia doesn't like to talk while at school.

But this whole wearing underwear thing is accomplishing two things, it's getting her to use the toilet AND it's making her communicate with her teachers.

She doesn't appreciate that but I sure do. I love that she's finally talking to them, showing them how well she can communicate when she wants to.

We're making progress here.

My biggest fear about school was the lack of communication. Olivia speaks/communicates very well at home. But out in public? She's a typical 5p- kid. She doesn't talk.

Those who haven't ever seen her at home or at Gram's house wouldn't know she even CAN speak.

But now? She wants to be a big girl and part of being a big girl is using the toilet to pee. And part of that is talking to her teachers.

And she's doing it.

So far.

I know, way to jinx us all, right?

Posted by AandO | Comments: (2) | Permalink

2012

Jan 04, 2012 09:34pm (EST)

I feel like I've abandoned all my Share friends. I didn't mean to do this. With the move to our new house in August of 2010, the girls' new school, Tom selling the old house five months after we bought the new house and blah, blah, blah...I'm not the best of friends, there you have it.

But 2012 is going to be a good year.

We're off to a fabulous start.

Olivia went to school yesterda sans pull-up. Instead, she wore regular old underwear (and clothes over the underwear, duh!) I sent three extra outfits just to be safe but she came home in the same clothes I'd sent her in.

She's been accident free (pee) for almost two months. This is HUGE. But we were leary of sending her to school without the protection provided by a Pull-up because...well, she doesn't talk to her teachers. It's very frustrating because she CAN talk, she just WON'T talk to them. So the great underwear experiment of 2012 was more about communication than about the actual act of urination into a toilet.

But so far so good. Of course, I don't know how today went so...we could be 50/50 at this point.

In other news, Alyssa is turning NINE next Saturday (the 14th.) And she'll be getting something she's been asking for for years. I managed to convince Tom to agree to get her a kitten for her birthday. This is a big deal for him, it took some serious convincing but he's warming up to the idea. I've already applied to adopt from our local animal shelter and thanks to the lovely Julie (whosures) I've been approved so we get to go next week and let Alyssa pick out her kitty.

So much fun to be had.

We're so incredibly blessed around here. Please know that I realize that and I try so hard not to take what we have for granted.

Resolutions for 2012?

Read more to Olivia. She needs the interaction and the stimulation. I need the routine of sitting down each night at a specific time and knowing that we're settling in.

Donate more to Reece's Rainbow, a ministry that raises money for families wishing to adopt special needs children from Eastern Europe. This is big for me. If my child had been born over there, I'd have been pressured to leave her in an orphanage because that society believes she has nothing to offer. It breaks my heart and while we're not in a position to adopt, we can help others who are.

Sometimes, my resolutions aren't about me. And that's a good thing

Posted by AandO | Comments: (5) | Permalink

TRADITION

Dec 15, 2011 08:01pm (EST)

The year Olivia was born was the first time I remember coming across the Little Debbie Christmas tree cakes.

They had the bigger, individually sold kind in the cafeteria of the hospital where O spent her first eleven days.

Each afternoon when I’d go back to the hospital to see Olivia, I’d take Alyssa with me and we always go to the cafeteria and get her a Christmas tree cake. We’d spend a few hours up in the NICU beside O’s isolette, Alyssa would color or play with whatever little toy she’d brought with her and I’d either bathe O or hold her or just look at her, humming to her, ‘petting’ her, letting her know I was there.

Then Alyssa and I would go home and Tom would head to the hospital for the night shift. I was always there first thing in the morning, leaving Alyssa home with the promise that she’d go back with me later in the day and that we’d for sure get her that Christmas tree cake.

The Sunday before Olivia was born, I put up our Christmas tree. But I only managed to put the lights on before needing to just rest.

By the time O came home, I’d still not found time to put ornaments on the tree. But Alyssa, little three year and ten months old Alyssa, had taken care of that for me. She’d decorated the tree with puzzle pieces, small horses, ribbons and bows.

It was beautiful and heartbreaking all at once for me.

Once Olivia came home, Alyssa missed those Christmas tree cakes but Tom, ever the hero, found them by the box at Walmart.

We now have a tradition that we always have a box of Little Debbie Christmas tree cakes in the house. Olivia loves them.

I had a tough day yesterday. I was tired and out of sorts. The girls and I were all in bed by 9:00 last night and yet, after a night of uninterrupted sleep (thank you, Olivia!) I was still grouchy and tired this morning.

In fact, my mood was so foul that Tom called me once the girls were on the bus to make sure everything was okay.

Huh. I started this post to talk about the Christmas tree cakes and how they make me smile to hand one to each of the girls or when I pack one in Alyssa’s lunch. I like to remember how important they were to her during those hospital visits.

But it occurs to me that my foul mood might have something to do with those very visits.

See, I’ve told myself for the past five years that I came through O’s NICU experience unscathed.

We got a happy ending, see? So I have no reason to have scars, no reason to look back on those days with anything but gratefulness and perhaps a sense of nostalgia.

But that’s not true, is it? Even though she was only in that hospital for eleven days, I hurt each and every one of those eleven days. She was never in any mortal danger during that hospital stay. I know that now and I think I knew it then, but that didn’t change the fact that I had to leave her every single day, with strangers to care for her until I could go back.

It also doesn’t change the fact that when I left Alyssa each morning, my heart broke because she wanted to be with me, no matter where I was going and I left her there with Tom so I could concentrate on Olivia for a few hours before going back to Alyssa for lunch and our return to the hospital.

Those Christmas tree cakes were symbolic to Alyssa. They let her know that, at the moment I was buying her that cake, she was important, she was the one I was thinking about.

That sad Christmas tree that year, the one with the puzzle pieces so lovingly placed on the tree by a little bitty girl who wasn’t even four years old, it breaks my heart even today. It makes me ache for all that we lost in those eleven days that O was in the hospital.

Yes, we have our happy ending. We are blessed beyond measure.

But I mourn those days, those weeks that Olivia was such a miserable baby. I mourn that little girl that was Alyssa, that little girl who decorated the Christmas tree because her mommy was too tired to do it with her. That little girl who waited all day long for a Christmas tree cake to show her that her mommy was still going to put her first at least once in awhile.

I hope that by acknowledging my anger, my residual sadness of those events, I can go home tonight with a lighter heart, a knowledge that we did come through to the other side, that we’re all here, we’re all healthy and this Christmas will be everything I wanted O’s first Christmas to be.

If not, at least I know where the moodiness is coming from and even if it’s not relieved by the acknowledgement, I can own it rather than bury it.

My pain may not be nearly as great as what so many others have suffered but it is mine and I can’t heal from it if I don’t let it out, let the sun shine on it and burn it away until it’s just so much ash to be blown away by the winds of laughter and happy endings.

Posted by AandO | Comments: (6) | Permalink

COMPARISONS

Nov 12, 2011 02:18am (EST)

It's often hard not to compare one child to another. Even if they're almost four years apart in age, it's still hard to not make comparisons.

Alyssa's conference was everything I expected it would be. She's a joy to have in class. She's cooperative, she's kind to her classmates, she works hard and she's good at everything she does. Well, with the exception of her handwriting, which we're going to work on.

She's great. She really is and I hope and pray that I manage to convey to her how special she is to me.

Because her sister? Is also special but in other ways, ways that are actually more visible to the naked eye.

See, the comparisons started a long time ago. Way back when Olivia wasn't even sitting up at six months old and I thought back to when Alyssa's was crawling at that age. Or when O wasn't holding her head up when she was ten months old but A was walking.

The comparisons don't happen much anymore, because we stop keeping track, right?

But O's parent teacher conference wasn't quite the same as A's. Yes, her teacher said she's delightful, she's sweet, she's willing to try anything they ask her to do. But she hates tracing and cutting with scissors and she's not afraid to let her teachers know this.

She's still struggling with the potty and she doesn't talk much in class, even when spoken to.

I went to Olivia's class Halloween party and she talked to me, a lot. When it was time to go, her teacher said, "Wow, this is the most I've heard her talk all year. She's speaks very well, when she speaks."

Exactly. Rules aren't nearly as important to Olivia as they are to Alyssa. She doesn't really care if her teachers want her to talk to them, if she doesn't want to talk, she isn't going to.

I realize that this spitfire nature of hers is a good thing. I know she needs this stubborness to get her where she needs to go. But it's tough to tell a preschool teacher that.

Her teacher said that she can't (as in, she's not allowed) tell me whether she thinks Olivia is ready for kindergarten next year or not. But she can tell me that she thinks Olivia would benefit from another year of preschool. I know we're only three months in but we've (Tom and I) already decided that O is going to attend another year of preschool.

Preschool is mostly about social growth. It will help her to be in the same class with the same teacher for another year.

I was warned that the princpal is going to talk about junior high sports and how, if we hold O back a year, she won't be able to play sports as a fifteen year old eighth grader. Somehow, that isn't a concern for us at this time.

Kindergarten, according to the preschool teacher is very academic. We want to give O the best chance she has at success. Things don't come as easily for her as they do for Alyssa.

That's just one more comparison.

I'm trying hard not to make them, though. They're both my sweet girls, they each have their strengths and their weaknesses.

The're both so, so special.

Posted by AandO | Comments: (3) | Permalink

WHAT TO SAY?

Nov 10, 2011 07:43pm (EST)

Things are good around these parts. Olivia loves preschool, Alyssa's you're typical eight year old who begs for pets on an near constant basis (spoiler: I talked Tom into consenting to getting her a kitten for her 9th birthday. Shhhh, don't tell her, it's a secret!)

Olivia seems to be going through some sort of developmental thing (I have no other word for it.) The only symptom is that her eating is out of whack. She's usually a voracious eater. On a normal day she eats like a 17 year old boy. Seriously. That girl can put away the ruffage.

These days, though? She's a picker. She's turned finicky and less than cooperative. It's annoying to all the adults in her life because, duh, we want her to eat and maintain the svelte 35 pounds she's managed to put on in the last almost five years.

The bigger news, though, is that Olivia is trying to write her name these days. It's so much fun to watch her write her O and then sit back and think about the other letter. I can hear her muttering the other letters under her breath but sometimes the actual manipulation of the pen is beyond her.

A picture of her latest rendition of her name is below. Neat, huh?

I get to leave early today to meet with Alyssa's third grade teacher. I don't expect any surprises where Alyssa's school progress goes. She's pretty much right there with all the other kids in her class. We'll see, though. Obviously, I'm not in that classroom on a day to day basis and that's why we have these little conferences.

I feel like we dodged so many bullets/shoes/roadblocks in this life we're leading. How did we get so lucky with these little girls? How is it that I am so blessed to have them in my life and to also have everyone here in my life? It really is a wonderful life.

Olivia Writes

Posted by AandO | Comments: (2) | Permalink

SHAREUNION

Oct 25, 2011 02:16pm (EST)

Every year since 2008 I've written a post about ShareUnion and how amazing it was. The first year I got to remind everyone that Houston has TWO airports. Wheee, that was a fun taxi ride across town for me and Julie.

This year, though, I didn't get to go. I was all set. I was packed, checked in at the airport and Tom called. He was sick. Sick enough to call me and confess that he didn't think he could take care of the girls over the weekend without me.

I'm actually proud of him for swallowing his pride and making that call. He's one of those guys who never asks for help. He's never one to admit when he's down for the count.

But this time, he let his concern for A and O override his need to be strong. And I'm glad.

Yes, I missed seeing everyone. I missed hugging Lauren and holding Micah. I hate that I didn't get to laugh with Jackie and Katie and room with Julie.

But in the end, like always, I was right where I was supposed to be. I was at home, caring for two little girls who are healthy, keeping them out of the house most of the weekend so that their daddy could sleep and get healthy himself.

He's back to pretty much normal already. I'm glad for it.

And now I get to check out Facebook pictures and posts from the weekend to see what I missed.

I feel so lucky to have Share and ShareUnion. I feel so incredibly lucky to have met so many of you who post here.

When I found SYS (thanks Julie for pointing me in the right direction) I was a little lost. I was still in the middle of O's six months of crying. She was still hooked up to the apnea monitor. We were tired and I'd never felt quite so alone.

This place gave me a sense of belonging and SU just cemented that sense.

Next year? I hope, I hope, I hope I get to go next year.

Posted by AandO | Comments: (5) | Permalink

Sep 22, 2011 08:23pm (EST)

Starting a new school means that Olivia has met another physical therapist. In the four years since she first started physical therapy, this will be the third therapist who has worked with her, if we don’t count Miss Maggie, the gymnastics coach who worked with her last year.

I met the new PT last Friday.

Let me stop here and say that sometimes, I’m still a little bit in denial. Our life, our ‘normal’ just feels so right, so…yes, normal, that sometimes, meeting with a ‘professional’ who has never met O, never worked with her, hasn’t had the chance to be totally charmed by her, I’m always a little shell-shocked when I leave a meeting like this.

It’s so easy for me to fool myself into watching my ‘special-needs’ child climb over the top of my mom’s couch, dangle three inches from a step-stool, let herself drop those three inches and then balance enough to climb down the stairs to race around and do it all over again. I can think, “Wow, look at her, she’s not that far behind. She’s doing what most kids her age do.” So to have a stranger tell me how much work O has ahead of her just to be close to her age-appropriate peers, well, it’s tough.

With that said, the PT was very, very nice. She introduced herself and then went on to say that I have a delightful child. She said that she’s never met such a sweet, pretty child and if I didn’t want her, she’d be more than willing to take her home. Awww. She even went on to tell me the good things that Olivia did that surprised her, like doing three sit ups. Hey, that’s more than I can do. Ha!

And yet, of course O qualified for services. That’s not what surprised me. Oh good heavens no. I know she’s weak, I know she’s behind her peers. I just often don’t realize how far.

But…I also know how far she’s come. And for someone who has met her one time, someone who tried to get her to go up the stairs to the slide five minutes after she met her, to tell me how far behind she really is, it’s tough.

See, I know Olivia. I know she’s stubborn. She comes across to strangers as this compliant, fragile little girl. But I live with the monster. I live with the defiant streak that makes her sit at the kitchen table for fifteen minutes after the rest of us have left the table because she refuses to take that last drink of milk that her dad insists she take before she can be done.

I play referee between those two constantly. He thinks he’s the boss and tries to assert his ‘daddy rules the world’ attitude and she rolls her eyes and goes about her business, doing what she wants when she wants. I remind Tom at least three times a week to pick his battles and that if she drank most of her milk, it’s probably okay to waste that last drink because is it that important that she do every single thing he wants her to the way he wants? I want to instill a sense of responsibility, of independence in her.

Okay, wow, tangent.

Her preschool teacher was also present for the meeting last week. She’s lovely. She also talked about how sweet, how quiet, how fragile O is. She said she hasn’t really pushed Olivia to do much in class because she’s afraid to make her cry.

Ohhh, my Lord!! I laughed and said that it was okay for her to push O. I told her Olivia has a strong sense of self. She’ll be fine. If she doesn’t want to be pushed, she’ll definitely let Mrs. F. know it.

I am truly grateful to have good, kind, smart people working with my girls. I’m grateful to Alyssa’s third grade teacher for sending home notes when A forgets to take a paper back to school with my signature. I’m also grateful to her for pushing her students, wanting more and better from them. How else are these kids going to reach their fullest potential?

And I’m grateful for straight talking physical therapists who don’t let mamas sit around in denial. Our normal is a good one. But it’s definitely not the typical normal and I wouldn’t want to get complacent. I want to keep challenging both my girls. No matter how stubborn and obnoxious they can be. And oh yes, can those two be stubborn and obnoxious. I have no idea where they get it.

Posted by AandO | Comments: (4) | Permalink

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