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AandO

July 2012

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NAIVELY INSENSITIVE

Jul 19, 2012 08:13pm (EST)

Once upon a time, I had a friend who had her baby way too early. When this friend's daughter was born at 25 weeks, I honestly thought her child would be fine. Sure, she'd spend a couple of months in the hospital growing and then she'd come home and become a chubby toddler who kept her parents on her toes.

That beautiful friend posted here recently (hi Julie, Riley Bug's mom) and in the comments, I told her about how I'd naively assumed her child would be fine.

And she is fine. After 90+ days in the NICU, after surgeries and therapies and scaring her parents half to death on numerous occasions, she's ten years old now and is phenomonal. She's defied all the odds.

And I think, perhaps, it appeared in my comment to Julie that I took some of the credit for that because I never once doubted that Riley would be fine.

I've given that comment some thought in the past day or so and I realize how insensitive that comment could seem to the many parents here who have children who aren't as lucky as Riley, who aren't here at all to even try and defy the odds.

I would never want to hurt another parent with my comment about how strong Riley is. Yes, she's strong but that doesn't mean other babies aren't or weren't strong. They just weren't as lucky.

And honestly, I was just so naive back then. I had no clue. I hadn't found Share, I hadn't met so many of you amazing moms who some how defy the odds yourselves by coming here and supporting others while your own hearts are broken.

See, I had a miscarriage the year before Julie had Riley so early. So I figured the bad stuff had happened to us (us being me and my immediate family/friends) and so duh, Riley HAD to be fine, she couldn't be anything but fine because we'd all already suffered.

I know now that suffering doesn't work like that. Just because we've suffered enough for a lifetime doesn't mean we get a pass from more suffering. Bad things happen to good people.

But I didn't or couldn't know that. I couldn't accept that something could happen to my best friend's child.

Then, when Olivia was born and had to spend some time in the NICU, I was again stunned that we all had to go through something like this again. And then she was delayed, pretty seriously delayed. And then we got the 5p- diagnosis.

But I know that even now, this doesn't make us immune to more suffering. It just makes us grateful for where we are right this second and makes us appreciate the very good things that are happening right now in our lives.

All this is to say I am so sorry if my comment hurt anyone out there. That was never my intention. I wish that I were smart or intuitive enough to always, always say the thing that each person needs to hear to help them through the tough times until the sky clears and there is light at the end of the darkness.

But I don't always say the right thing. I hope I'm getting better at it though. I hope that as I lose my naivety I grow wiser and stronger and kinder.

Though honestly? I kind of wish I could have kept that naivete because it would mean that nothing bad had happened to any of my lovely friends, that included everyone I've met here.

Posted by AandO | Comments: (5) | Permalink

BECAUSE THEY CAN

Jul 12, 2012 12:23pm (EST)

How about this:

Fun from the 4th, playing, fully clothed in a lake. I realized a long time ago, say almost nine years ago, when Alyssa started walking at 10ish months old, that if you don’t want a child to get wet, don’t take them anywhere near water. Seriously, don’t let them near a lake, a pond, a pool, a mud puddle, or heck, don’t even give them a sippy cup with two drops of liquid in it because that child will manage to turn those two drops of liquid into enough fluid to drench themselves.

Seriously.

So while at my aunt’s last week, we were very near a lake. As in, Lorry’s back door opens up and you’re standing on her sea wall, with about six feet of cement between you and the lake. I realize I’m usually the queen of hyperbole, but this time, I am not even slightly exaggerating.

And a half a block from her front door, there is a private beach that is available to my aunt and her neighbors to enjoy. We, as my aunt’s guests were welcome to frolick as well. It was fun. And hot. So, so hot. That water that O is dashing about in? Felt like a slightly warmed hot bath. Not refreshing in the least.

But even fully clothed, I couldn’t bring myself to care that she got soaked. It’s one of the few things I’m zen about. If you take a child near water, they’re going to get wet. No reason to get all bothered by it. Just plan to have dry clothes nearby or, well, don’t and let them drip dry. That’s what we did. She probably felt better than the rest of us, who were almost as wet, but it was because of stinky sweat rather than stinky lake water.

When my negativity quiets down every so often, I realize that at the end of most days, I’m doing pretty well at this whole mom thing. I say yes more often than I say no. I believe I’m saying yes to the right things and when I do say no, it’s because they’ve asked for or to do something either inappropriate for their ages or there just isn’t time/money/resources to do what they’ve asked to do.

And saying no is okay. It’s necessary.

Though saying no to a child asking to play fully clothed in a lake or even a puddle just seems mean and if there’s no good reason (as in you’re on your way to a fancy dress party or church or some other place where muddy clothes might seem disrespectful) then let the mud fly. I do believe my kids will look back on those times fondly, remembering that there were moments when Mom was pretty darned fun to be around.

From A's Camera 7-9-12 553

From A's Camera 7-9-12 557

From A's Camera 7-9-12 564

Posted by AandO | Comments: (2) | Permalink

SPECIAL CONVERSATIONS

Jun 19, 2012 01:53pm (EST)

This past weekend, A and O and I (hee, that amuses me so much) were invited to a skating party for one of the little girls A went to kindergarten with. The mom, B, and I clicked that year and have stayed in touch even though A and O have changed schools. Of course, we only moved about 20 miles away but we happened to move out of Indiana and into Ohio hence the changine of schools.

Anyway!!! While at the skating rink, much fun was had. Olivia first wore regular skates and hated them. The wheels spun too fast both forward and backward. She hated the little thingy that was meant for her to lean on and use for support.

Once we changed her into skates that fit over her shoes and that didn't allow the wheels to roll backward, she was much happier. Yet, she needed to rest often.

At one point, she asked to go rest. I lead her to the carpeted area and sat her on a round bench. I asked her if she'd be okay sitting there while I went and skated with Alyssa for a few minutes. She agreed reluctantly.

So off I went onto the skating floor.

I glanced over and waved at Olivia a few times. Then, I saw something that warmed my heart to boiling point.

B's younger daughter, who will be six this week, had made her way to the bench where O was resting. THis little girl, let's call her Gail, has austism, a pretty severe case of it. She speaks and enjoys people but only on her terms. She's very sweet and loving but can have moments of stress when confronted with uncomfortable situations like crowds and strangers.

As I skated, Gail and Olivia sat and 'talked' to each other. Now honestly, I'm not sure either of them understood what the other was saying but they were very obviously having a 'conversation.' One of them would speak while the other listened and then they'd trade off and the other speak while the first listened. They showed each other their glow sticks, holding their hands over them so it was darker and they could see the colors.

It was so cute and sweet and I think I might have melted right there on the floor.

I skated over to B and pointed out our little girls. She smiled the same smile I know was on my own face. We were both so happy to see this interchange, this interaction between two very special little girls.

At one point, Olivia was turned toward Gail with her (O's) legs crossed in a very lady-like manner. Her body language was so mature and very much like something she's probably seen adults do. Which is seriously so awesome. She's watching, she's taking it all in. She's processing and learning from her peers as well as the adults around her.

Isn't this what we all want our kids to do, typical and 'special' alike?

Posted by AandO | Comments: (5) | Permalink

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

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