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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.

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


Mar 15, 2010

Love in the Silence

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I’ve been very lucky to have mostly healthy family members for most of my life. Other than Aunt Dot, I haven’t lost a major member of my family in many, many years. One of my grandfathers died before I was born, and the other died when I was Cordy’s age. Since then, immediate family members have kept on going and I’ve grown used to accepting they will always be in my life.

So when Aaron woke me up last weekend to tell me my mom had called, and that something had happened to one of my grandmothers (my mom’s mom), I immediately had a sickening feeling in the pit of my stomach. Filled with worry and panic, I called my mom back to find out what happened. They thought grandma had a stroke, she told me, and she can’t use her right leg. Her heart was also beating too fast. It was too soon to know how serious and what the long-term effects would be, but she seemed to not lose any cognitive ability.

I’ve spent the last week visiting my grandmother and getting daily updates from my mom. They confirmed that she did have a small stroke, and considering where the stroke happened in her brain, we’re very lucky it wasn’t more devastating. My grandmother started the week unable to walk, with right-sided weakness, but by mid-week was already learning to use a walker. They then moved to her to rehab, where they reported this weekend that she might get to go home as early as the end of the week if she keeps making progress.

My grandmother and I have never been very close, so my panicked reaction came as a little bit of a surprise to me. She comes from a time and place where emotions are held close and not shared with others, while I wear my heart on my sleeve. I was always too wild, too loud, too dramatic as a child, never able to live up to some unknown standard of how a child should behave, it seemed. She never understood what I was going through – no matter my complaint, I was always told how easy I had it compared to those who lived when she was a child. I could never impress her.

But she’s also my grandmother. When I was sick as a child, she was there even though I wanted my mom. And while she wasn’t as comforting, she did make me soup and read me stories as I laid on the couch. When we’d visit her house, I’d collect acorns in her backyard and pretend to make pies, and in the evening she’d measure me with her dressmaker’s measuring tape to see how much I’d grown, writing the numbers down on a plain white pad of paper.

In the past few years, I’ve listened more to her stories of her youth, trying to mentally take notes for myself. I vowed at Christmas to put my Flip camera to good use this year and videotape an interview with my grandmother, so we’d have a record of her life for posterity. Stories of growing up during the great depression in a poor farming family, stories of joining the ladies’ auxiliary unit of the Navy to support the war in WWII, and stories of raising three daughters on a farm with no running water, where if you wanted chicken for dinner, you had to go kill your own chicken. Last weekend I thought I may have missed my chance to save those stories.

Knowing that she’s getting her independence back so quickly gives me hope that she’ll be with us for a little while longer. Had she been forced to remain in a nursing home or assisted living, I doubt she would have lasted long. She’s a fiercely independent woman – she’s lived on her own for 34 years, ever since my grandfather died unexpectedly – and she’s not the type of person who could go on living if she couldn’t do it her way. As cold as it may sound, we all hope to someday (a long time from now!) find her dead in bed. No suffering, no long, drawn out decline or illness. It’s exactly how she’d want to go, and probably how my mom and my aunts want to go as well. That entire family prides itself on independence.

But despite our independent streak, my mom’s family is still a close one. My mom and aunts have been visiting my grandmother daily, keeping her spirits up, getting her whatever she needs, collecting her mail and keeping her house tidy while she’s gone. You’ll never see hugs exchanged, but they are there in our actions. You will never hear any I love you’s being said, but they are there in the silence between words. 

I’m thankful my grandmother is still with us for now, and I’ll do a better job of remembering that she won’t be with us forever, so we should appreciate all the little moments. As soon as she’s feeling better, I’ll be dusting off that Flip camera and preparing for one of the most important interviews I’ll ever conduct.

And two little girls will someday want to know more about their G.G.
Filed Under: big issues, daily life, family time, love ·


Nov 25, 2009

I’m Going to War Against Artificial Food

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I was recently asked to take a survey about a new fruit snack. Normally I’m willing to be pretty open to new ideas for kids foods, trying to find the positive in them and give constructive feedback. But this time something in me changed.

The description of the product was “fruit-flavored snacks for kids” and I immediately stopped reading. Fruit-flavored. Meaning not real fruit, or probably not enough to meet FDA standards to call them fruit snacks.

I’m finished with fruit-flavored.

I’m finished with high-fructose corn syrup serving in the place of other sugars that weren’t created in a lab.

I’m finished with artificial flavors made from ingredients like petroleum (artificial vanilla, anyone?). Yes, there’s oil in your food.

I’m finished with artificial colors used to make foods look more “appealing” which in reality only make food look more unnatural. These same FD&C colors also make my five year old hyperactive, foggy-headed, and cause skin and gastrointestinal irritation that can last for several days until these chemicals work their way out of her system.

I’m finished with substituting a cheaper, less nutritious ingredient in place of a primary ingredient that makes the food what it is. (I’m looking at you, Hershey. Why the need to switch to vegetable oil in place of real cocoa butter?)

I’m finished with eating meat from animals that have been shot up with antibiotics and growth hormones so they can barely survive in miserable, crowded feed lots until they’re turned into food.

The truth is, I’m not completely finished with all of those things. Unfortunately, I can’t simply declare that my family is going all-natural and will be shopping only at Trader Joe’s and Whole Foods from now on: our paycheck doesn’t stretch that far. I like eating out sometimes, too, and I know I can’t always ask for a full ingredient list for any items we order.

But I can take baby steps in moving toward that goal. So many products marketed to children are little more than nutritionally void junk, including fruit-flavored snacks. Sure, they may put a little fruit juice in it, touting 10% of a child’s RDA of Vitamin C or whatever, but does that 10% really make up for the HFCS (high-fructose corn syrup) and artificial colors my child would also be eating?

Mira doesn’t show the same sensitivity, but Cordy is extremely sensitive to artificial colors, especially FD&C Blue #1. (Made from tasty, tasty coal tar – YUM!) Give her a stick of rock candy (100% sugar) without any colors, and she’s fine. Give her the same rock candy, only one that is dyed blue, and within the hour she’ll become more hyperactive, less focused, more irritable, and generally unpleasant to be around for the next few days. I won’t even begin to tell you the long trial and error it took to figure that out. Now Cordy has to avoid anything with FD&C Blue #1, which can be hard when her favorite color is blue.

It would take little effort for food manufacturers to rethink their policies towards additives in food marketed to children. When I spoke to PepsiCo at BlogHer this summer, I was invited to share my opinions of their products on a video that would be presented to the executives of the company. I told them that I do like many of their products, but would like them more and be far more willing to purchase them if they would work towards removing artificial additives from their foods. Even if it raised the cost of their products slightly, I think they would see a positive response from the consumer.

Since becoming a parent, I’ve become more concerned with nutrition and label reading, and as a result, I’ve decided against many of their products for my family. Should PepsiCo decide that their Harvest Cheddar Sun Chips or Cheetos don’t need to be artificially vibrant orange to still be delicious, we’ll eat them again.

I’d also like to see companies like Disney get more involved in removing artificial additives from foods with their licensed characters. We pass by the Disney Princesses fruit snacks in the grocery each week, and I’ve had to tell Cordy more than once that she couldn’t buy those because the artificial ingredients would make her sick. Thankfully, she’s a happy convert to Annie’s bunny fruit snacks, which are completely safe for her to eat.

Sure, not all kids will have as dramatic a reaction to artificial ingredients like Cordy does. But I consider Cordy’s sensitivity to be a barometer of things to come if we as a society don’t start taking a closer look at what we’re eating. I ate boxes and boxes of Fla-vor-Ice popsicles as a kid, and now I have a child who can’t tolerate them without a reaction – did I somehow poison her system from years of abusing every cell in my body with junk food? While I’m not a scientist or a psychic, isn’t it possible that our bodies will eventually hit a point where they can no longer tolerate this junk? Who’s to say that many of the health problems we see today – diabetes, cancer, etc – aren’t showing up more because of all the chemicals in our bodies?

I never intended to be a crusader, a hippie, or a “crunchy granola”-type person, and I’m in no way claiming that my family’s nutrition is excellent. (It’s not. Proof: I just had McDonald’s for a quick lunch.) But I’m more aware now, and I’m standing up to say I’m sick of just how much junk is out there. I’m tired of reading every single label in the grocery, searching for hidden ingredients and deciding if a food is good enough or not for my cart. I feel like I can’t trust anything on the grocery shelves.

I want better products to choose from. I want to buy deli meat without wondering if it has gluten or some other filler in it. I want cherries that haven’t had a color makeover to bright red. I want more natural sources of food coloring used in products aimed at children.

And dammit, I want real buttercream icing. You know, made with real butter and powdered sugar. And chocolate with cocoa butter. If I’m going to have junk food, I want it to at least be real food.

Vote with your wallets, people. If you can’t afford all natural, pick the worst offenders on your grocery list and start there. Making your grocery list healthier by one or two items is still one or two items for the better.

Filed Under: big issues, rant ·


Nov 17, 2009

Fight For Preemies & Cherish The Babies We Have

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I remember sitting in my OB’s office during my third trimester, hearing the confirmation of news I already knew: Cordy was breech. The stubborn child’s head had been in my ribs for weeks, and at my urging the doctor performed an ultrasound to confirm that what was directly on the other side of my cervix wasn’t a skull with a large brain, but instead little girl parts with the occasional foot kicking me in the cervix.

Disappointment washed over me. My choices were slim: attempt a breech birth, although at that time her positioning made it extremely unlikely, try an external version (where they try to turn the baby) and risk a cord accident, or have a c-section, which carries risks we all know. I asked my doctor which option was the least risky for Cordy, and c-section seemed the best option at the time. The risks of major surgery were obviously higher for me, but it was an easy decision to make.

In the end, I got what I wanted: a healthy, full-term (nearly 39 week) baby. And I know that my struggles with facing a c-section were minor compared to some of the harder choices other parents have faced. Or those who had any possibility of choice taken away from them. I never had to face a pre-term delivery, wondering if my child would survive outside of my uterus, praying I could keep her in for just a few days longer to improve her chances. It makes fretting about a c-section minor in comparison.

My mother still keeps an image etched in her soul of a 32-week infant daughter, head full of dark hair, half of her face bruised from the traumatic delivery, too little to breathe on her own. There were no photos taken of her, but my mom can still remember her features clearly. She had only enough time to give her a quick kiss before the baby girl was transported to the NICU, where she died just days later.

My mom is an incredibly strong woman, but I know she still mourns the daughter she lost. The details she can recall of those heartbreaking moments are vivid, moments that happened 34 years ago. I’ve asked her before if she’s angry with what happened, upset that she was forced to go through so much pain only to bury a child she barely had the chance to meet. She responded with a reminder that if Krista didn’t die, I wouldn’t have been born, and in the end she’s glad she has me. (Krista was born at the end of July. I was born in mid-June the next year. Roughly 11 months.) I don’t know if that answer fully explains her feelings, but then again I think a lot of her feelings about those days are buried deep.

Today is Prematurity Awareness Day, sponsored by the March of Dimes. The March of Dimes recently released their report card for the nation, and I’m sad to say that the United States received a D. What’s worse, Ohio (along with several other states) received an F, with a preterm birth rate of 13.2%.

While there will always be some elements out of our control, it is possible to bring down this number: better health care (and insurance) so all women have equal access to prenatal care, education about risk factors for premature birth, and a push for doctors to deny elective inductions before 39 weeks would be a great start.

In an ideal world, NICUs would be smaller and needed far less often, and nearly every child would be born without any need for life support. Until then, we can only raise awareness of our country’s high rate of prematurity and support research efforts to improve prematurity outcomes and reduce the number of babies born too early.

Today I honor the memory of a baby born too soon, and I celebrate the lives of two healthy little girls who have made me the mother I am. Hundreds of bloggers are writing about a baby dear to them today, too. Will you?

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Filed Under: big issues ·