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Apr 12, 2010

Um, OK, I Suck

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Tofuforyou reminded me the other day that it’s been awhile since I paid any attention to this new little project. I guess it was partially out of shame. You see, my weight hasn’t budged in over a month. On Feb 21, I weighed 187 pounds and today? I’m still exactly 187 pounds.

I’d be proud of my consistency if I wasn’t trying to actually lose weight, not maintain.

So yeah, still much of the same. What’s going wrong? Well, a lot of it is a lack of motivation on my part. Over the past month and a half, I’ve had the stress of being unhappy at my job, then searching for a new job, and then starting a new job. Throw in spring break for the kids, and exercise and eating right have kinda fallen to the side. I know, I know – it’s all excuses.

But I will say one good thing for myself: at least I haven’t gained any weight. Some of the changes I’ve made have stuck with me. I’m still eating smaller portions, still trying to look for ways to incorporate a little extra exercise into my daily life. I take the stairs more, park further away, etc.

I need to get back on track. But I don’t know how to get that motivation back. There’s a 5K being planned at BlogHer this July, and I’d like to run it. At the moment I’d probably collapse before the pack spread out. But I know I can get back to running again, if I can just find the time and the energy to get myself moving.

How do you motivate yourself? I’m open to ideas.

Filed Under: motivation · Tagged:


Apr 6, 2010

Freeze Frame

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Pull out a camera, and Mira immediately wants to cheese it up. And while it gets tedious after awhile, it’s impossible to say no to her. I mean, c’mon, how can you turn down the chance for unlimited close-ups?

Shy smile

Sweet, yet neutral look

Huh? What exactly are you going for here, Mira?

This? This is what I face for the next 16 years.
Filed Under: daily life, Mira ·


Apr 1, 2010

Not An April Fool’s Day Joke

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Something I haven’t had the chance to share here (until now) is that starting today, I’ve got a new job. Yeah, I know, I didn’t really mention anything before today, but that was mostly because I wanted to make sure it was a done deal before shouting it to the heavens.

It’s not that I disliked my other job, because the truth is I really do like mother/infant nursing. I was less comfortable with labors, but I think I rocked the mother/infant part of my job. But it was an hour-long drive. And the 12 hour shifts left me feeling drained, so that even on my days off I felt like sleeping all the time.

More importantly, we’re working to get Cordy involved in more activities and social skills classes. Which requires a lot of after-school time. And money. In my old job, I had to leave for work soon after Cordy got off the bus, leaving no time for these extra activities. Aaron would then take over care of the girls in the evening. It’s hard to take Cordy to therapy when Mira doesn’t appreciate being dragged along.

So it was a hard choice, but an opportunity presented itself that I couldn’t refuse. My new position is here in Columbus and is a short drive from my house. It’s eight-hour days. And it pays much better. In all, it provides everything we need at this time. If I’m going to work full-time, then I might as well make sure it’s the perfect fit for me and my family, right?

I’ll also still be working with moms and babies, only in a less hands-on manner. I’m going to be one of several nurses working on a support hotline for new parents, where parents can call or e-mail with any infant feeding questions, be it breastfeeding, formula feeding, or solids. I’ll know more after my first day of orientation today, but so far everything about this new initiative sounds awesome, and I’m hoping it’ll be a huge success.

Sure, I’ll miss the hands-on care I enjoyed in a hospital setting, and I’m planning to find some occasional work on a mother/infant unit to keep my clinical skills from getting too rusty. But I don’t feel bad about this job change – it was necessary for my family and for me, and everything fell into place so quickly that it felt like it was meant to be.

Wish me luck on my first day!

Filed Under: me me me, the J-O-B ·


Mar 30, 2010

New Blog Post, Now With MORE Evaluations!

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Despite knowing that more than half of the adult world are parents, it’s easy to feel alone sometimes. Especially when your kid doesn’t follow that standard growth curve, be it physically, developmentally or socially. You want to talk to other parents about your child, but at the same time, you worry no one will understand. Or worse – they won’t care and instead judge your parenting in its place.

Which is all a long-winded way of saying thank you. Whenever I need advice, encouragement, or just someone to say I hear you, I can always turn to the blogging community for support. My previous post was mostly about me trying to process the news I had been given about Cordy, and all of your comments were very, very welcome. I was feeling a little alone and uncertain about what was the best course of action for her, so crying it out in a blog post seemed like a good way to work through it. It’s a lot of responsibility to make choices that could affect her entire life, and I often worry I’m making the wrong ones.

You’ve given me fresh ways of looking at the situation, new ideas to consider with her team, and a lot more hope that no matter what decision is made, it’ll all work out. This is the heart of blogging for me – the community – and I hope this aspect of blogging never goes away. I no longer feel alone; instead I’m empowered and know that I’m doing the right thing by carefully considering the options and continuing to educate myself more on each option.

At this point, a lot of my worrying is on hold until we find out what schools she’s offered acceptance into next year. Our school district has a lottery for schools, and we can apply for up to three. We’ll have to see what schools are even available to her. Depending on the lottery, she may not even have the choice of a special-needs classroom. Or if we really want to pursue that option, we’ll have to work with school officials to bend the rules to get her where she needs to be.

Instead, I now turn my attention to the question of summer camp. Cordy attended a mainstream summer camp last year with little difficulty (OK, there were a few bumps along the way…), but this year she’s old enough to be in the older kids camp, with a more rigorous schedule. I’m not sure if it would be the best fit or if we should consider a special-needs camp. I’ll be spending the next weeks researching all our options and likely doing more hand-wringing.

And then there’s Mira.

Not content to let her sister get all the attention, she had her own school district evaluation a few weeks ago, and just last week we received the results of that evaluation. A team of experts again convened around a table with me, and one by one they gave me their report on Mira.

(Spoiler: She doesn’t have autism. Not even a chance. At all. Nope, none. Just wanted to get that out there before we begin. Our purpose of the evaluation was to see if she qualified for further speech therapy.)

First, the psychologist explained that Mira scored on the high end of average range for social/emotional skills and adaptive behaviors. She knows how to play the social game, and she has a good grasp of imaginative play and daily living skills. No surprises here.

Then gross and fine motor skills were addressed. She is at the low end of average for both of these, but not behind enough to qualify her for special needs services. Both therapists explained that most of her problems with these areas were in motor planning, and depending on the results of speech would tie in with a diagnosis of speech apraxia.

Then the speech therapist started her presentation. She began with verbal comprehension, and explained that she’s never seen a child of Mira’s age score so high. She was easily working with concepts rated for a five- year-old, and the therapist said she probably could have handled the seven-year-old material but she stopped the test before that point, fearing that Mira would tire out before the other therapists had the chance to evaluate her.

At this point I was resigned to the idea of Mira not qualifying for any additional services. I was hoping she’d be offered some speech therapy through the school district, hoping we could cut back a little on the $100 a week we’re spending on her current speech therapy. But with such good evaluations – even possibly gifted in language! – it seemed unlikely they would want to help her speech issues.

But then the therapist brought up the area of articulation, which in Mira’s case she described as “a mess.” She drops a lot of consonant sounds, substitutes sounds for other consonants, and generally is very hard to understand. In terms of placing her on their scale, she ranked well below the cut off line for average.

Put the articulation and verbal comprehension scores together and she still is average, but in this case the therapist recommended the school district still provide services. They don’t want her to become frustrated at not being understood and then stop trying. We’re lucky that she’s a persistent little thing right now, repeating herself hundreds of times if needed until you understand what she’s trying to say.

So the final verdict was she has all of the signs of speech apraxia, which can be remedied by plenty of speech therapy. I’ll admit, I probably seemed far cooler about this news than they expected. But c’mon – a little speech delay? Pssh – that’s nothing. I can handle that! Did you meet my older daughter three years ago when she scared the school nurse with her violent meltdown? (Side note: the special ed teacher in the room DID meet my shrieking child three years prior, and still clearly remembers that day. She was the one who carried Mira into the building for me that day, and she’s ecstatic to hear of Cordy’s improvements.)

Our choices at this point for Mira are special-needs preschool or just speech therapy. They’re concerned she’ll be bored with her classmates in special-needs preschool, but the benefit is they can also offer her OT and PT to help those minor problems in gross and fine motor skills. Since it’s a half-day program, they recommended placing her in a typical half-day preschool for the other half of the day.

I’m leaning towards that option, only because they also promised me her teacher would be Cordy’s first preschool teacher, Miss Wally. (*Not her real name.) I may not have written much about her, but know that I’d walk through fire for that woman. She worked miracles with Cordy, and I remember last year we both cried – teacher and parent – on Cordy’s last day with her. She told me if Mira ever needed anything, I was to make sure they sent Mira to her. And now they plan to.

So it would appear I now have two children who are considered to be “not typical.” But I don’t mind. They are both awesome little girls, as different as the sun and the moon, and I’m glad I get to be their mother.

As a former quirky, nerdy girl who didn’t fit in, and possibly still doesn’t, these two girls couldn’t be more mine. Aaron would argue that he fits that quirky description, too. Which means we’re the perfect parents for them.

They may debate that statement when they’re teenagers.
Filed Under: Autism, being a mom, big issues, Cordy, daily life, love, Mira, school ·


Mar 22, 2010

Not The Words I Wanted To Hear

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Cordy has been in a full-day, special-needs pre-K class (wow, that’s a mouthful!) for nearly an entire school year now. With only two full months to go before the end of the year, thoughts of kindergarten have been looming ahead of us. After winter break, the teacher started sending homework home with Cordy as an attempt to get her used to the kindergarten routine. I had no idea that kindergarten now has homework – whatever happened to practicing your letters and making crafts for your parents?

Cordy has been doing pretty well with her homework, and her teacher has praised how quickly she learns new subjects. So when it was time to attend Cordy’s transition meeting – to re-evaluate her needs and determine what services she’ll need for next year – my greatest worry was that she’d fool them all and not qualify for any services.

The meeting took place last week, and involved Aaron and I plus Cordy’s teacher, her OT, PT, and speech therapists, the school psychologist, and the special education coordinator. We all sat around a large table with papers scattered all over it. Each member of the team had performed a re-evaluation of Cordy’s skills, and we got the results in the meeting.

In terms of occupational therapy (fine motor skills), Cordy can do nearly everything. She has good fine motor control but still needs help regarding things that require strength or focus. They recommended she continue OT only to help with some adaptive skills that she lacks the focus to complete.

For gross motor skills, Cordy is doing well. She suffers from low muscle tone and therefore lacks the strength to do some things other kids her age can do, and she’s more than a little clumsy. She’ll also continue to receive physical therapy for next year.

Her speech therapist said she’s making tremendous progress in speech, with a lot of her scripting gone or so well refined that it’s hard to distinguish if she’s using a script or is answering a question on-the-fly. She has a large vocabulary, too. At this point, based on testing Cordy no longer needs to receive speech therapy. Hooray for graduating from one therapy!

Then Cordy’s teacher gave us her report on Cordy. She pointed out the academically Cordy is more than ready for kindergarten. She understands math concepts that are advanced for her age, and she’s at kindergarten-level ability for reading.

But socially, things aren’t so clear-cut. Her teacher is concerned that Cordy will not be able to handle herself in a mainstream classroom. She has little patience to wait until her needs are met, she doesn’t react well to changes in routine, and she would likely feel overwhelmed in a classroom with 20+ kids. She’s also a perfectionist who will shut down if she can’t do something perfectly on the first try. You also need to know just how far to push her when she does shut down – a little bit will be effective, but push too hard and you end up with a meltdown. A kindergarten teacher would not have the ability or the time to give her the one-on-one time and encouragement she needs.

Her teacher then recommended that Cordy not be placed in a mainstream kindergarten classroom next year, but instead in a special-needs classroom with the ability to spend a little time in a mainstream classroom each day. She said it would allow Cordy to have a one-on-one aide with her in that case, and the amount of time she spends in the mainstream classroom could be increased based on how well Cordy performs.

It was also at this point when the school psychologist chimed in to give us her assessment of Cordy. She referred to several tests that showed that cognitively, Cordy is gifted in many areas. Her ability to work with and understand non-verbal concepts is practically hovering on genius. But she lags behind on social-emotional concepts. The psychologist summarized that Cordy fits perfectly in the category of a child on the high-functioning end of the autism spectrum, possibly Asperger’s. She believes that with a gradual introduction to mainstream classrooms, Cordy will learn how to handle herself in the classroom and be a success.

I have to admit: I was heartbroken at the news.

Cordelia has made incredible progress since starting special-needs preschool and even in the past year she’s surprised me with her new levels of focus and understanding of the world around her. I started this journey through therapy with the hope and belief that Cordy would figure it all out and start kindergarten in a class of “typical” children. I even was prepared for the possibility she would continue therapy by being pulled out of class for her therapies as needed. But never, never did I consider that she might start kindergarten in a special-needs classroom, only occasionally visiting the mainstream class to get a taste at a “typical” education.

I’m sure I sound bitter, and I am a little. Actually, it’s less bitter and more scared. Having her remain in a MRDD classroom worries me. Will she be able to live up to her full academic potential if she’s not getting the entire curriculum of a typical class? And if she doesn’t get the full curriculum, how will she ever be able to transition into a mainstream class without that foundation to build on? Will we ever get to hear that she’s ready for a mainstream class? In her current classroom, she’s one of the highest functioning kids in the class and a lot of what they do is simple for her – will she really be challenged in a similar situation next year?

Beyond all of this worry is a feeling of failure on my part, too. Kindergarten was my line in the sand – I expected the official start of her formal education to follow that of her peers, with perhaps a little more support around her if needed. The what-if’s drive me batty – what if I had spent more time practicing social skills with her at home? What if Ohio’s health insurance system didn’t suck so much and deny her any coverage for necessary therapies, and what if we had worked harder and sacrificed more to pay for those therapies out of pocket?

No actual decision has been made at this point. As it stands, the team’s recommendations are only that: recommendations. As her parents, we have the right to ignore them and enroll her in a mainstream classroom. We know her abilities and we know what she’s capable of in many situations. But at the same time, these are the professionals who deal with this all the time. They see her at school each day, they know her well in that environment. Which of us really knows best as to what is right for Cordy?

I know that Cordelia is a smart little girl who tries very hard, has a good heart, and is out-of-sync with the workings of our world. Where that puts her in our education system, though, is a mystery to me. At the beginning of her formal education, this fork in the road looks awfully wide to me, and I can’t see the twists and turns each path could take to make the right choice. I’m willing to do anything for her to ensure she gets exactly what she needs to continue developing into the brilliant and cheery woman I know she can become, but at this point I don’t feel certain on which course of action to take.

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Filed Under: Autism, big issues, Cordy, school ·