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AandO

May 2012

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PROCESSING

May 23, 2012 07:13pm (EST)

So…

The IEP meeting.

It’s never bad. Not really. I read about other mothers who have to prepare and do research and having print-outs of services and why they’re child needs them.

We’ve never had to do that and this is Olivia’s second school system.

I supposed we’ve been lucky that the IEP meetings have been so easy.

Because they are. There are never really any surprises. I know Olivia’s strengths and weaknesses. And even though her strengths totally outweigh her weaknesses both at home and at school, her weaknesses are definitely more visible at school.

That’s not a surprise either. I mean, every child is different at home from who they are at school. Alyssa recently became a member of the Bomber Courtesy Club at school because of her exemplary behavior and manners while at school. At home…well, let’s just say her manners need a little work. But that’s because she’s comfortable at home and is more than willing to push me and Tom to our very limit of patience.

Olivia is the same way. She’s more comfortable at home so she talks to us more and she exhibits more sociable behaviors.

At school, she tends to withdraw and just sit back and take it all in. She listens to everything, brings it home and processes it there, regaling me with stories and songs from her day.

I love this yet…I wish she’d show them all that she is in those three hours while she’s there.

The school psychologist needed to classify Olivia today in order to set her up for services. Obviously, with the 5p- diagnosis, we have a medical classification but Olivia’s not sick, not really. She doesn’t need special services due to her medical condition.

No, she needs special services that provide speech therapy (to continue to build upon the foundation of verbalizing her needs/wants and sharing in back and forth conversations with her peers and teachers the way she does at home.)

She also needs physical therapy to continue to build up her muscle tone and help her be more comfortable with her own abilities so she can participate in gym classes as well as play with her peers on the playground.

She needs occupational therapy because she’s a weak writer. She’s just beginning to use the tripod grasp with pencils and crayons. She won’t trace letters and can’t write her name. She also can’t draw a person with distinct body parts. Though she can write and A and put a face in it and declare that it’s Alyssa as an A. I know, cute, huh?

In order for Olivia to receive all of the above therapies, she needs to be classified. The psychologist gave us (me, the therapists, O’s preschool teacher and the school principal) two options. We can classify Olivia as on the autism spectrum or as learning disabled.

He (the psychologist) was leaning heavily toward the autism classification. He assured me that if he were to observe Olivia without knowing about her genetic diagnosis, he’d put her on the spectrum. He gave me his reasons for that: She tends to withdraw while in the classroom, preferring to do solitary activities rather than participate in group activities. She does not transition well from one activity to another. She needs almost constant adult supervision to ensure she’s following directions and continuing to participate in the classroom agenda. She’s easily distracted from tasks. Her social skills are the weakest part of her entire development. She no longer pulls her hair out but she does need space when processing the things going on around her.

In the end, after much discussion about inclusion and how her therapists would try and provide her services in the classroom with typical peers present as much as possible, we agreed to go with the classification of autism. I was assured over and over that this will be revisited at each meeting and this does not put Olivia into a box from which she can never emerge.

The autism classification will allow Olivia to receive more one on one help if it is deemed necessary down the road. Her ST was insistent that Olivia needs as much exposure to her typical peers as possible and that we need to try very hard not to put her in a classroom with atypical peers and just leave her there. I agree with that. I’m so grateful for insightful therapists who have taken the time to get to know my child.

Olivia’s teacher was quick to point out that Olivia is not a distraction to her peers. She doesn’t act out in a way that pulls their attention away from the teacher. Olivia’s social issues are more to her own detriment than those of her classmates. Which is why the speech therapist wants to continue to keep her in the classroom with typical kids as much as possible. She’s seen that Olivia learns from example and watching her peers interact is how she’s going to build her own social cues.

I feel like I should be bothered by the autism classification. Maybe I will be after I process everything that was discussed today. But for now, I’m just grateful that we have such a dedicated team working with us and Olivia. We all want her to succeed in school and eventually, in life. What more could a concerned momma want?

Posted by AandO | Comments: (4) | Permalink

NOTES FROM SCHOOL

May 10, 2012 08:04pm (EST)

I apologize to anyone who might have read this on my other blog but...I need to voice this here as well as there.

Sigh…

Let’s start with the good, shall we? Over the weekend, after a long day away from home, I was puttering around the kitchen, putting away the snacks we’d taken with us when Olivia called me to the bathroom.

I arrived to find her sitting on the toilet, her cushy tushy in place, her magazine opened on her lap, her step stool at her feet.

“I need you to clean me up,” she said, preparing to climb down from the toilet.

I glanced suspiciously at her underwear, suspecting nothing good would come of it. But they were clean.

She’d realized she needed to poop and went about the process in the appropriate manner. Go Olivia!!

My mom and I were lamenting just last week that we’re ready for the next stage in potty independence. Olivia has been pretty much accident-free at home for months and months now. But…she wants us to go into the bathroom with her even though she does it all herself. She just likes the company. And we’re sort of tired being her potty pal.

And we’re getting there. Slowly but surely. Baby steps and all that jazz.

Alas, all is not sunshine and roses in Olivia’s world.

This morning I was cleaning out Olivia’s backpack in preparation for school.

There was a note from her teacher.

To paraphrase, it said something like: Olivia is having trouble with behavior at school. She is refusing to perform requested tasks such as picking up after herself. She’s also taken to throwing papers on the floor and refuses to pick them up. I was wondering if you had any suggestions on how to motivate her.

Oh…do I wish I had some suggestions. I wish I knew what to say to her teacher.

I suggested that it’s the mood, the fact that there are only a couple more weeks of school left and she senses everyone’s underlying excitement over the coming summer break.

I wrote that Tom and I talked to Olivia about rules and respect and how she has to listen to her teacher when she tells her something.

It just occurred to me in the writing of this post that perhaps Olivia is FINALLY getting comfortable with her teachers. Maybe her behavior is a sign that she feels safe with them. Yes, that’s a good thing and yet…I’d rather she not be a brat just because she feels safe to do so.

I did state that O doesn’t behave that way at home. She’s pretty mild-mannered at home. She’s obsessive about keeping the trash can lid and the toilet lid down. Tom used that this morning to remind her that leaving paper on the floor is dirty and nasty just like she thinks leaving the toilet lid up is nasty.

We’ll see.

I have her IEP meeting in just under two weeks. I hope that O can hold out for the rest of the month. It’s almost over and she can have a summer to be wild and free.

Until next fall when we start the whole process over again.

Any advice from you veteran moms out there? How do you motivate your bigger kiddos to behave appropriately at school? I’m not sure O gets the idea of rules. Even if she gets it, I’m not sure she cares. This is the frustrating part.

What can I do to make her WANT to behave at school? How can I get her to want to do the work, put in the effort? Bribery? I’m all for it. I just have to find her thing, that one thing that she wants more than misbehaving…it’s probably going to be Barbie related and I’m okay with that as long as it works.

Punishment doesn’t really work for her. So…bribery it is, right?

I'm open to just about any advice these days...I'm just not sure what we can do to make her understand the necessity of rules at school.

Posted by AandO | Comments: (2) | Permalink

SLEEP REVISITED

May 04, 2012 07:17pm (EST)

You know what I haven't complained about around here lately? Sleep!

I know. One might think that's because my children are now five and nine years old, and so I don't actually deal with sleep issues anymore.

One would be wrong in that assumption, let me assure you.

The reason I haven't written about sleep is because, well, duh, I haven't written much in the past, well, forever.

But our sleep issues (mine, to be exact) are alive and well.

The issue? I want to sleep and my children think that sleep is for the weak.

I am weak. I admit it. They are strong and tough and need much less sleep than I do.

Seriously, though, it's actually gotten better. Except when O is sick. Which, blessedly, isn't really all that often but she does tend to get colds more often than say, your child with a typical numbrer of chromosomes. And when she's got a cold, Olivia get cranky. And when she's cranky, she wants to be coddled and cuddled and snuggled and scratched and soothed and oh dear Lord, just give me a child-safe sedative now before I collapse into a sobbing heap at the foot of her bed.

Alyssa? At nine is an awesome sleeper. She goes to bed most nights no later than 9 (8:30 most school nights) and wakes at 6:00 with a bit of a scowl and more than a bit of attitude. But I think that's more to do with being nine than to lack of sleep. I see so much of myself in this girl.

Truly, it's so much better these days than back in those early days of infancy/preschool and commuting that I can't complain. Well, I can but I feel a bit guilty for doing so.

We're lucky over here, is what I'm saying. Even though Momma is still sometimes very, very tired.

And now some random photos:
1. Olivia has taken to dressing herself lately. I love the independence. Her taste is impeccable, don't you think?

2. Tom planted a bunch of trees (twigs that will become trees) and he was showing Alyssa the proper watering technique.

3. Alyssa got a kitten for her birthday back in January. He's not quite as kittenish as he once was but we do so love this little fluffy-butt. His name is Orville.

Self-Dressing

Watering the trees

Orville

Posted by AandO | Comments: (4) | Permalink

PRINCESS CHARM SCHOOL

Apr 25, 2012 06:19pm (EST)

Olivia loves having longer hair. She loves swinging it around her face and twirling it with her fingers.

However...the way the left side is growing in as compared to the right side, well, it leaves a rather unkempt silhouette. See, the right side is straight from years of trimming in an attempt to keep it even with the left side, which was being yanked out at the root. THe left side? Is not so straight. It's coming in so curly you can 'boing' those curls for hours of entertainment. It's as if she has chemo on one side of her head.

Yesterday, I was able to convince her to let me put her hair in pigtails. Or piggies, as she calls them.

She will leave the piggies in her hair through the three hours of school but the minute she steps off the bus, out come the piggies.

Ahh well, at least her hair looked groomed during school. Her afternoons are Gram's aren't about grooming anyway, they're about fun.

This morning I was trying to figure out what to do with her hair that didn't involve dunking her head under the faucet.

And it occurred to me...she adores the movie Barbie Princess Charm School. And Blair, Barbie's character in the movie, wears on small part of her hair in a ponytail off to the side.

I pulled the most unruly part of O's hair into a small ponytail off to the side of the top of her head and secured it with a small elastic. Then I put her on the bathroom counter and said, "Look how beautiful you look PRincess Olivia! You're just like Blair."

She grinned and turned her head this way and that to get a better look at herself.

Yes, I'm not proud. I'll use Barbie any chance I get if it makes my kids behave and let me control their unruly hair.

Posted by AandO | Comments: (4) | Permalink

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

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