School starts for Cordy on Wednesday, and this year will be very different for her. For the past two years, she's attended our district's special needs preschool, a half-day program. She's had the same teacher, a woman to whom I owe an enormous debt of gratitude for all she's done for Cordy. But Cordy turns five in a few weeks, and is really too old to continue in the half-day program.
Cordy's preschool teacher pulled a lot of strings to get Cordy placed in a special needs pre-K classroom on the other side of Columbus. We all agreed she wasn't ready for kindergarten, and her teacher assured us that this class was the perfect fit for Cordy. We got to meet her new teacher a week ago, and while Cordy was very hesitant to meet her, it was a pleasant meeting.
Her new classroom is twice as large, with additional resources like an indoor swing and a trampoline. She'll still have one teacher, but now two aides in the classroom, even though the class size remains at eight kids. They work closely with the kindergarten class, and should Cordy show a lot of progress in the first half of the year, she might get to visit the kindergarten for a few hours each week in the second half of the year.
Ms. K seems like a great teacher. She's thrilled to have a girl in the classroom this year, and I heard one of the aides already contemplating buying hair ties to play with Cordy's hair. They're also open to parents volunteering in the class. I'm planning to volunteer when I can, depending on my work schedule.
I worry about how all of this change will affect Cordy. I hope for an easy transition, even though deep down I know the chances of any transition being easy for her are slim. This will be a new school, a new classroom, new friends, a new teacher, a new routine, and a new bus. Unlike last year, she'll be there for a full school day, too. She'll also be riding the bus for an hour and a half each way, meaning she'll be spending 75% of her awake time away from us during the week. That's a lot of time away.
I'm preparing for epic bad behavior from her in return. On the upside, at least we only have to see it 25% of the time, right?
My real hope is that her adjustment period is shorter than it has been before. That she quickly adapts to the new routine and is happy with her class, her school, her teacher and her new friends. I want her to come home each day tired but happy from learning new things, being pushed just-far-enough, and enjoying her class.
And one small confession: I'll admit to being a little relieved at full-day school. Cordy is a joy to be around, and one of two small-yet-brilliant lights in my life, but she can also be trying. Very trying. I appreciate our time together, but I also appreciate our time apart -- needing that break from the daily juggle of giving her what she needs while trying to meet the needs of everyone else in our house, too.
She'll be fine. It'll all go well. (And yes, I know starting school is hard for many kids, but like everything else, Cordy seems to take the transition far harder than the average kid.) We just need to get through the first hard days.
--
And thank you all for your comments on my health care reform post. I'm thrilled that not a single comment was negative. (Proof we can have civil discussions about health care, or were the opponents just busy last week?)
For those who support charities, I wanted to let you know that I'm once again participating in Walk Now for Autism, and this year I'm hoping to raise twice as much money as I did last year for autism research and education. If you'd like to donate to my walk, you can do so directly through the Walk Now website.
I can't even imagine how much trouble she'll be when she's 10. She knows herself, and she knows how to work anyone to her will. Her first day of preschool? Didn't even whimper when we left -- instead she ignored us and set to work making the room her own. When Aaron picked her up, they said she was "sweet" to everyone, and acted as if she's always been a part of that class.
Mira will rule them all through charm.
-- PS - Did you catch the Columbus Dispatch article where I (and a handful of other great local mom bloggers) shared our thoughts on the state of mom blogging? No? Go read it!
Meet Cordelia, my single most important reason for health care reform:
Many of you know her, either from in-person meetings or from this blog. She's four years old -- nearly five -- blond, blue-eyed, very tall, and exceptionally healthy. She rarely gets sick, and when she does it is minor and doesn't require a trip to the doctor. (Or massive, when she breaks her tooth in half.) She usually only sees the doctor once a year for her annual check-up.
But she also is on the autism spectrum. PDD-NOS to be precise. As a result of this, she has endured an uphill battle against herself. Two years ago, she was a different child. She spent her days lost inside herself, studying the curve of a toy car wheel, counting and lining up blocks over and over for an hour, and rarely making eye contact with those around her. Her speech was scripted, and while she talked a lot, it was often quoting entire episodes of Dora the Explorer. She'd run laps in the living room each evening, flapping her arms absentmindedly, oblivious to anything going on around her as she ran, jumped, and flapped.
Remember this video? You couldn't break her pattern. And re-reading that post, the signs were there, even at 17 months old. A longer version of the video shows how determined she was in her counting as she lined up her toys.
When she did answer questions, it had to be factual answers that she could draw from scripts. Never could she answer the question, "How are you feeling?" because the truth was, she didn't know. She had little to no sense of imaginative play. When we put her in a summer camp, she looked right through other children as if they weren't even on the same plane of existence as her. Kids would say hi, and she completely ignored them. Adults fared only slightly better.
Worst of all, the slightest change to her equilibrium sent her into violent meltdowns, often made up of primal shrieking, writhing on the floor, repeating a phrase over and over, banging her head into something until she bled, unusual demonstrations of strength, and no recognition of anything around her at that time. Her eyes looked glassy, as if all higher functioning in her brain was shut off, and trying to soothe her or calm her down usually made it worse. This would go on for 15-40 minutes at a time. The worst of these meltdowns terrified me, as I always worried that she might never come out of it.
What set off these meltdowns? Switching activities. Touching something gooey. Different bedsheets. Putting her bare feet in the grass. A child singing. Leaving the house. The wind changing directions. A Buddhist monk in Tibet dropping his chopstick on a pillow. Nearly anything would trigger it, and we'd all suffer from these meltdowns on a regular, daily basis. Sometimes more than once a day. Sometimes more than once an hour.
Oh, we had several lucid moments. Moments when I'd look at Cordy and say There she is! There is my daughter! To the casual observer, she seemed like a bratty two year old that had been allowed to have her way too much. She could fool someone who only spent five minutes with her -- she'd either ignore them for some toy, or give nonsense answers to their questions that would make them think she was trying to be silly. But more often than not, my Cordy was hidden inside herself, trapped so deep that I couldn't reach her. I'd see that vacant stare and look deep into her eyes, desperately wishing for an ability to reach into her brain and show her that the world outside it was far more interesting.
With all of that backstory, allow me to describe Cordy today. She's happy. She likes going to school, although the idea of a new school this year is causing severe anxiety at the moment. Her speech, while still scripted at times, is clear and she can often answer your questions with a relevant answer. She's learning imaginative play, too -- recently she's been obsessed with pretending to be a doctor.
Just this past week she started sharing her emotions regularly, telling us when she's angry or sad. You've never seen a mom so happy to hear her daughter huff, "I'm feeling angry!" because it beats the alternative we're all used to.
She still has that vacant stare at times, and her eye contact isn't the best it could be. Her need for routine is just as strong as before, and we've also learned to cater to her needs to help her feel more comfortable. She still "stims" by running or jumping or flapping, but now she can tell me, "I'm feeling a little flappy today," to help us understand her actions. We can go out to restaurants with little fear of making a scene now, unlike years past. Sure, she'll occasionally get overstimulated and disappear under the table for a bit, but that's better than drawing the attention of an entire restaurant full of Asians trying to enjoy their Sunday dim sum.
Her meltdowns? The massive ones are no more than once every 2-3 weeks now, although we still endure minor meltdowns every 2-3 days, where she'll slap herself in the head, or withdraw into a closet or under her trampoline while she cries and talks herself down by repeating conversations of TV characters or a simple phrase over and over.
The world is still very confusing and frightening to her, and while we're seeing more and more of our daughter, it remains a battle we must fight every single day. She has a long, long way to go. While she was eligible for kindergarten this year, we chose to enroll her in special needs Pre-K instead, giving her one more year to show some progress before attempting to put her in a mainstream classroom. She's not ready yet, and I'm already worried if she'll be ready in time for next year.
But no one can doubt that Cordy has made amazing progress. So much of the credit for this transformation can be given to her special needs preschool teacher and the team of therapists in her classroom: occupational therapists, physical therapists and speech therapists.
The one entity I can guarantee you gets absolutely NO CREDIT at all for her progress? Health insurance.
Because back when we were first told that Cordy was developmentally delayed, most likely autistic, and needed aggressive intervention right away, I sought out help in the most sensible place: the medical system. Cordy's pediatrician was very understanding and gave me a long list of therapists in the area for PT, OT and speech, as well as psychologists who offered additional testing, behavioral therapy and social skills classes. I left that meeting feeling ready to get started in helping my daughter find her way back to us.
And then I ran into the big health insurance roadblock.
I e-mailed our health insurance -- one of the "best" in the state of Ohio -- explaining our situation and double-checking how much coverage we would have for all of this therapy.
Their answer sent chills down my spine and made me physically sick: they provided no coverage for autism-related claims, insisting that autism was an "incurable and untreatable" condition. Zero coverage, end-of-story.
Let me put this another way: if your child has a speech delay, they will cover speech therapy for that child. If your child needs speech therapy because of autism, you can expect to pay every penny out of pocket, because they won't cover it.
Not only were we stopped from pursuing any treatment (because it's tremendously expensive and we didn't have an extra $25,000-50,000 a year to spare), but in being honest with our health insurance, Cordy now had a big target on her head. Anything that could in any way be related to autism, even if it was the result of a different medical problem, will be denied by our insurance in the future.
I'm thankful that Cordy broke her tooth during a time when we were unemployed and the girls were covered by Medicaid. There was no way Cordy could have endured sitting in a chair for a root canal and repair of her tooth -- she needed general anesthesia.
Had we still had our old insurance at that time, they would have denied coverage of the anesthesia, saying it was related to her autism and not part of the regular course of treatment, leaving us with thousands of dollars to pay. (Or we could not get the surgery at all, putting Cordy through pain and possible infection, which can lead to systemic infection and death. Which of course isn't an option, leaving us to risk bankruptcy or losing our house for the health of our daughter. Nice "choice," right?)
Medicaid took care of the entire procedure. No bills to us, no questions about why she needed general anesthesia. Medicaid is the one health insurance in Ohio right now that cannot deny a child's treatment related to autism. (Before you get upset, know that I'm in no way saying Medicaid is perfect. That's a discussion for part 2.)
We now have insurance again, thanks to my job. So we're all fully-insured, paying $260 a month for the privilege to pay only 20% of the bill for health care. But Cordy is once again without any coverage related to autism.
Cordy's autism therapies so far have come directly from the school district. (Thank you, taxpayers - you're already paying for her therapy, only in a somewhat inefficient, roundabout way.) She receives one hour of group OT, PT, and speech each week in her class, during the school year only.
The medical diagnosis she recently received calls for way more therapy than that to give her a chance at the best outcome, but we can't afford it. She needs several hours a week of therapy, along with social skills therapy and ABA, two services not offered by the school system. She could achieve better results with more therapy, but unless we get insurance coverage for it, or we win the lottery, it ain't happening.
It infuriates me that health insurance companies are allowed to declare autism an "incurable and untreatable" condition and exclude any coverage for it. My daughter, who never gets sick and is otherwise a "good bet" for these companies, is uninsurable in the one area where she actually needs treatment.
Had we not sought out alternative treatments for her via the school system and our county's MRDD funding, it's quite possible Cordy would still be acting out daily, her sweet personality lost to the world and to herself, all because an insurance company declared her to be useless to society. You want health care rationing? It's going on right here and now. Instead of paying the money upfront for therapy to help her, they would rather pay the money to later institutionalize her. (Which I'm sure works out to a much larger bill.)
It's true - institutionalization or group homes are often covered by insurance for adults with autism who can't live on their own, while basic ABA, OT, PT and speech therapies are denied for children who could avoid those places if they only had the early intervention to help them. What kind of a backward system is that?
Several states have already made it illegal to discriminate against autism for health insurance (not Ohio yet), but it shouldn't stop there. This needs to be addressed at a national level, and not just autism, but other pre-existing conditions, too.
What will Cordy's future be like? I don't know. We know from several experts that she's incredibly smart, although she often can't organize her thoughts well enough to demonstrate the full extent of her intelligence. It's possible she'll do well in school, but it's also just as likely she'll struggle. It's also possible that had we been wealthier and paid for additional therapies for her, she could excel far beyond our expectations. Have we failed her simply because we don't have enough money to get her what she needs? Maybe, but I feel our health insurance has failed us instead.
My personal belief is that health insurance should not be a for-profit entity. (Backpacking Dad's explanation of the current system is fabulous.) Does my daughter deserve to have lower odds at success and happiness in life because we don't have the right insurance or live in the right state to protect her?
Yes, you might say I sound a little socialist. You expect the government to take care of you! I'm sure someone will say. Well, sort of. I expect the government to protect my most basic rights, and I believe equal access to health care is one of those rights. (Just like we all enjoy equal access to military protection, a safe food supply, equal access to the judicial system and several other protections the government provides.) In exchange, I work and pay my taxes for those services, and I'm happy that my taxes go to help those who have lost their jobs and need assistance. After all, we were those people just a few months ago. It's not my place to judge who is truly deserving of assistance and who is not.
As with so many of my posts, I've rambled all over the place, but this is an issue that is too large for one post. Or a week's worth of posts, honestly. I'm barely touching on the issues here, and instead choosing to show you one story of the injustice of the current health insurance system. Because this little girl?
(pretending to be Dr. Cordy, ready to fix any boo-boo)
She's my reason to fight for reform. Knowing that other families are going through the same or worse than us is enough to make me stand up and say THIS IS NOT WORKING, PEOPLE!
So if you can look at that photo up there, and read all of the stories about Cordy I've written on this blog, and then tell me (and tell her) that she's not deserving of the therapy her doctors recommend, therapy that could help her become a woman who could go on to do any of a number of things -- maybe find a cure for autism, or cancer, or find a way to feed the world, or maybe be nothing more than a loving mom who does a damn fine job as president of her school district's PTA -- if you can tell us that she doesn't deserve the chance to be her best, because she wasn't born in the right family, with the right resources, and because she had the nerve to be born with an autism spectrum disorder instead of a different neurological condition that might be insurable under current rules, then do me a favor: click that little red X in the top of this browser window and if you're subscribed, go ahead and unsubscribe from my blog.
Because if you truly believe she doesn't deserve the treatment her doctors say she needs, then I am left to assume that you really don't care about her or my family at all, and I don't know why you bother reading this blog.
And while we could (and likely will) debate the minutiae inside the current health reform bill until three presidents from now, I see it as better than our current situation. A good start. I don't have the luxury of waiting for the perfect bill to be crafted, because it never will. I need change, for my daughter and our family, NOW.
I'll never stop fighting to give Cordelia everything she needs to succeed, but it would be nice to not have to fight so hard for once. It would be nice for someone in a position of power to say "Your daughter deserves the best chance, not because you have the right influence, not because it's politically popular, but because it's the right thing to do."
No parent should have to lay awake at night, wondering if there was some valuable possession she could sell, some additional work she could do, to make the additional money needed to give her child the health care she needs. No parent should have to feel the heavy guilt of knowing more is needed for her child's health and yet she's powerless to provide it.
"It's the most wonderful time of the year!" I love hearing that song on the Staples commercial as the dad tosses school supplies into the cart while his two children look like they're walking to their execution. Back-to-school also means back to routine, and this family likes routine.
We've already received Cordy's school supplies list in the mail, and I'm amazed at all the stuff she needs to have for the first day. Glue sticks, hand soap, box of tissues, notebooks, liquid glue, baby wipes, backpack -- and this is just for Pre-Kindergarten!
Of course, thanks to all of the Miracle Gro and bovine growth hormone we feed her, she also needs a whole new wardrobe for the school year, too. (Amazon child.) While I am once again employed, the paychecks have only started to roll in, meaning they're flying out to pay bills just as quickly. But she needs the clothing, so she'll have it.
When I was a kid, money was always tight at back-to-school time, too. I wanted the "cool" sneakers that the popular kids had, and I resented that my mom fought me on every fashionable clothing choice. Back-to-school shopping was always a battle, and not just for clothing -- who wants a no-name folder organizer when you could have the hip Trapper Keeper in all the fashionable colors?
My mom eventually thought of a way to end the battle. She told me at the beginning of August how much money I had for clothing and supplies, and I could buy anything up to that amount. The clothing budget was kept separate from the supplies budget, and anything that the teacher required us to have (like the box of tissues) was not included.
This meant I had to learn to use my money wisely. I could have a few new items that were high-fashion, or I could shop for cheaper items that maybe weren't as cool. It only took one season for me to learn my lesson: I blew the majority of my fall budget on a pair of Guess jeans, and while those jeans were awesome, I couldn't wear them everyday. I got tired of wearing last year's worn jeans and tops, all because I had to have that one pair of incredibly expensive jeans.
We're not at a point where Cordy cares about her clothing. She rarely notices what she wears, and almost never complains about what clothing I pick for her. So until that point, I'll continue to do my best to buy as much as I can for the least amount possible, shopping sales, consignment stores, and accepting hand-me-downs, all while still trying to give her some sense of style. Eventually, she'll want a say, and at that time I'll present her with the rule I followed. She'll be given a budget, and can pick what she needs as long as it fits in her budget.
Cordy really has no sense of money yet, either, although not for lack of trying to teach her. She is starting to learn that we can't always buy her what she wants, and that some things cost more money than what we have. I'm sure we'll have that money talk when we go pick out a backpack for her this year. She always seems drawn to the most expensive blinged-out backpack, when I know she'll drag it on the ground, get it filthy, and spill something sticky inside of it before the first month is over. A simple backpack is better because I know the abuse it will take.
Do you set a limit on your child's back-to-school spending? Do you have a fixed amount, or do you allow some wiggle-room in picking out supplies and clothing? I'm curious to know how other parents handle the back-to-school routine, since we're still fairly new at this.
And I'll have you know I wore those Guess jeans until they had holes in the knees, and then made shorts out of them and wore them until they were no longer decent clothing. I think I even considered cutting off the little triangle patch and keeping it after that.
Thank you for all of the congrats in my last post. I received my official certificate in the mail yesterday and now need to go shopping for a frame. (And received my diploma the day before. Nice timing!)
Yesterday was my first day working with the full duties of a nurse, and I was thrilled to get my permissions to the medication cart, to administer medications, and officially perform assessments. I can't wait until I'm ready to get fully involved in my first birth.
The biggest downside to all of this, however, is adjusting to not seeing my family everyday. I currently work 7am-7:30pm, requiring me to leave the house at 6am. I don't get back to our home until 8:30pm. By that point, both Cordy and Mira are asleep for the night, and I leave in the morning before they wake up. If I have two or three days grouped together, that means I go days without seeing my daughters.
I know there are other moms and dads who have to do this on a regular basis. I'm not used to it yet. Honestly, it makes me cry some days. I've spent the last two years almost entirely at home with my kids, and I've grown used to our routine together. I like seeing them everyday, eating lunch together, and going to the park sometimes. I'm aware of how incredibly lucky I've been the last two years.
And Cordy will be starting full-day pre-K soon, so she won't even be home for most of the day during the week. Mira will also be starting preschool two days a week. But it's that whole not seeing them at allfor 3 days a week that really bothers me.
Today I attended a training seminar, and as a result I was home by dinnertime. I walked in the door and Mira's eyes widened as she saw me. "Mah-mi! Mah-mi!" (yes, we have "m" sounds from her now!) she screamed as she ran towards me and tackled my legs. She nuzzled her face into my legs, her voice quieter now as she repeated, "Awwwww, muh mah-mi..."
"Mama, where have you been?" Cordy asked from the other side of the room. "I missed you, mama."
All at once I feel incredibly loved and piercingly guilt-stricken.
To add to the guilt, I'm often so exhausted lately that I can barely keep up with my two pixie sticks. No amount of caffeine can give me the energy I need to provide the attention they want from me.
I know this won't last forever. Once my orientation is complete, I'll switch to night shift and work 7pm-7:30am, allowing me to sleep while Cordy is in school during the day and wake around 3pm to spend time with the girls in the early evening.
Until then, I'll continue to be jealous that Aaron gets to spend so much time with our daughters right now, and remind him to give them as much attention as possible and enjoy those moments together. Never take that time for granted.
I passed! The results appeared sometime late this afternoon, and I was surprised to see them so quickly. (But you can bet I checked three times this morning, and six times during the afternoon.) I can officially call myself a registered nurse, and add "RN" after my name, anytime, anywhere.
And no, I can't tell you what that strange rash on your hand is. Or if I can, I'm probably just looking it up on WebMD.
This also means when I work tomorrow, I can wear the lovely necklace that my incredibly sweet and way-too-thoughtful friend Karen sent me:
Early this morning I took what was perhaps the hardest and most frightening test of my life. At 8:00am, I arrived at a plain-looking office building on the other side of Columbus to take the NCLEX, also known as the licensing exam that is the final step to adding those little "RN" initials after my name.
I read through the introductory materials the receptionist handed me, then had my ID checked, was fingerprinted and photographed, stored my purse, contents of my pockets (yes, I had to turn out my pockets) and watch (no watch allowed) in a locker, and stood at the door waiting to take my test. I was then fingerprinted again at the door, had my ID checked again, and was then seated at my computer workstation, where video cameras tracked my every move and microphones recorded every sound. If I wasn't nervous before, I certainly was after all of that.
Truthfully, I was nervous. Despite studying for it here and there, I felt completely unprepared for this exam. It's an incredible amount of material to know all at once, and while I had planned out a study schedule over several weeks, life got in the way and very little scheduled studying happened. My hands trembled as I clicked through the tutorial.
For those who aren't nurses, here's how the test works: it's a computerized adaptive test, meaning it changes based on how you answer each question. The first question is a mid-level question in difficulty. If you answer it correctly, it gives you a harder question next; if you miss it, you'll get an easier or equal difficulty question. It continues to track the level of competency you're at with each question, until it reaches a point where it is certain, with 95% accuracy, that you are either at a minimum level of competency to be a nurse, or will not reach that level by the end of the test.
There are 265 questions maximum, but the test can shut off anywhere after the minimum of 75 questions. In other words, the test keeps going until it knows for sure if you're passing or failing. (A few unlucky ones get randomly selected to take the entire test, even if they've achieved competency early on, for control purposes.)
From the very beginning, I felt I was in over my head. The questions seemed to pick apart my knowledge and focus on all of my weak points. Medications I didn't know appeared before me, with no hints as to what the med was for. I was asked several questions where I had to choose the patient I would assign highest priority to, when each answer seemed just as high a priority as the next.
And I had several of the "alternate style questions" - essentially questions that aren't your typical multiple choice, choose one answer type - and several of those were the "choose all that apply" questions. I hate those questions. If you miss one of the correct answers, you miss the entire question.
Where are the medication math questions? I wondered. I'm really good at math! As the question numbers gradually creeped up, I started to panic, realizing I was answering without being sure on more questions than I felt comfortable with. I got closer to the magic #75, and I silently tried to will the computer to keep giving me more questions so I had a better chance to show my competency. I know I can prove I'm a good nurse, just let me keep answering questions and get to the ones I really know!
Then it happened. I answered question #75, and the screen blinked and turned blue. After a few seconds of wondering if I somehow summoned the Blue Screen of Death, the grey background appeared again, with the words, "Congratulations! You've finished the NCLEX!"
NOOOOOOOOOO!!!!
I sat there unsure of what to do next. There's no way I did well enough to warrant the shut-off at 75 questions. But I also couldn't face the possibility that I bombed the test so badly that it determined me a complete failure at only 75 questions. The trembling in my hands appeared again as I answered the demographic exit survey questions and meekly raised my hand to call the testing assistant into the room to let me leave. I felt sick as I gathered up my belonging and walked to my car.
Just to add to the suspense, I won't know my results for a day or two. So instead I sit here and replay the test in my head, wondering if I will keep my job if I failed. If I do fail, I can retake the test in 45 days, but they might not want to wait that long for me.
I'm normally a fairly laid-back person. But I'm a nervous wreck right now. The Board of Nursing should run ads on their license check web page - they'd be making a fortune from my refresh rate right now.
So, lately it's pretty obvious that I'm overwhelmed. I'm still not used to working full-time away from home, I've had a big project with SavvySource that took more time than I expected, and Cordy and Mira are home for two weeks before school starts for the year.
Add in financial stress from discovering that Cordy's summer camp, which I was led to believe would be mostly covered by respite funding, actually will result in a $1300 bill for us because respite will only cover about $120 of the cost. We don't exactly have $1300 sitting around, and if we did, we'd be applying it to the social skills class Cordy's psychologist is recommending.
Oh, and I'm taking my license exam to officially become a Registered Nurse on Monday. Oy. I'm quickly turning into a ball of stress with a short fuse, and that's not good for me or my family.
It's enough to makes me want to disappear and forget my stress for a little while.
And so we are running away. At least for a weekend. (Longer would be nice, but I'll take what I can get.) We're joining the legions of geeks descending on Indianapolis for Gen Con, a gaming geek convention. Aaron will be doing interviews with companies for his website, while I'll be talking with the few game designers who are featuring games for preschool kids. And I'll be doing lots of zoning out, too. And looking at people dressed in pretty costumes, as well as unfortunate costumes. Because it's always a mixed bag - some people dress for their body type, and some people are 50-year-old men with stubble dressed in Sailor Moon costumes, complete with heels and lipstick. *shudder*
I'm hopeful this small escape will help me center myself and prepare me to take on the world again. If only Gen Con offered free massages by guys who looked like Johnny Depp.
How do YOU deal with overwhelming stress? I'm always looking for new ideas.
I was supposed to receive the results in a month. It took two and a half months, due to a slight processing error in payment from the Franklin Co. MRDD board. (Yes, they paid for it, and they recommended it. Thank you, citizens of Franklin County - it was a far better use of your tax dollars than some of the projects out there.)
Eventually I stopped wondering when the results would arrive. Maybe Cordy did such a good job at her evaluation that they saw no point in wasting a stamp? Maybe they laughed so hard at my worries that something wasn't right with my child that they forgot to send the results?
Then, just a couple of days before I left for BlogHer, a thick envelope appeared in our mailbox. And while I read it that day, I'm mentally and emotionally still processing what that envelope contained, even now. It's hard to see your child broken down into a series of behaviors and scores. It's hard to read the words of how your child is different from others, not sure of what challenges will you both face in the future.
I'll share one part of the summary for all of you. These are the words that occasionally float through my head, leaving me wondering what our next steps will be:
Cordelia is a nearly 5-year-old girl classified at school as having PDD-NOS. She has a history of social deficits, adaptive behavior delays, and sensory regulation difficulties. Her cognitive scores indicate average cognitive ability. Her autism screening scores indicate that Cordelia does display many characteristics consistent with an Autism Spectrum Disorder, such as PDD-NOS. Cordelia's scores consistently show difficulties with sensory issues, social pragmatic difficulties, resistance to change, emotional and arousal regulation difficulties, and social approach difficulties.
She, however, also displays very strong cognitive skills and expressive language skills. Many of her scores on the ADOS and PDDBI (screening tests) indicate difficulties that are indicative of a pervasive developmental delay but not specifically indicative of (classic) autism. Thus, at this time, it seems a diagnosis of PDD-NOS is most appropriate.
They want to further evaluate Cordy when she's a little older, thinking that she may eventually fit into the Aspergers label, and possibly ADD, too. Lots of new therapy ideas were thrown around, too. Expensive therapies. Therapies not at all covered by my new health insurance, who tells me that autism is an "incurable, non-treatable condition". But that's a rant for another day...
A few of the special needs bloggers got to hear more about this while at BlogHer. I needed to tell someone outside of family - someone who would understand that anything I said at that time wasn't necessarily what I really meant, but was instead a reaction I was still working my way through - and they were the ones who were most likely to understand.
So at the point I can't fully express what's in my heart. I don't even know what's fully in my heart. But last week I attended the kick-off for the Columbus Walk Now for Autism event, listening to other families bravely speak to a room full of people about the challenges they've faced and also the joys they've experienced. I cried. A lot. And I'm already signed up to walk again this year. I want my team to raise $1000 this year, doubling what we raised last year.
This much I do know: Cordy is on the autism spectrum, and once I organize my thoughts, the mama bear in me will be fired up again to fight for anything my little girl needs.
(And thank you, thank you to all of you who have provided me with so much support as we've gone down this road with Cordy. Your comments, your e-mails, your words of love have carried me through to this point, and I don't know what I would have done without this community. You're all lovely.)
Wanna know what it's like to go two years working part-time from home, then suddenly go back to work full-time, pulling 12 hr shifts that are really 12.5 hrs, which is really 14.5 hrs when you add in the commute both ways?
It's pretty friggin' hard.
I'm exhausted. Completely exhausted. I come home each night, intending to warmly reunite with my laptop and type out a thought-provoking post. Or at least throw out a cute photo of one of my kids.
But instead I come home each night, walking gently on my sore feet, read through my e-mail, try to reply to a few of them, check Twitter to lurk on any conversations going on, and then go to bed. On my days off, I want to sleep in. I feel foggy headed all day. My daughters climb all over me, but I don't have the energy to wrestle with them.
I know this is not permanent. Not only do I have a new job, but I'm also trying to learn an incredible amount of information in a short period of time. Unlike some jobs, the learning curve is high in nursing and mistakes can cost lives. (Or in the world of medical paperwork, mistakes can cost the hospital a payment, which is nearly as bad as costing lives sometimes.)
Or maybe I'm just reacting to a week where we've had patient after patient appearing at the doors. That whole full moon and laboring women superstition? It's all true. And then they turn into werewolves.
Either way, I think I'll be back to my normal routine in a few weeks. Which means that I picked a lousy time to start a new job, considering I'm one of several local mom bloggers featured in Columbus Monthly magazine for August. (On newsstands now, locals! Go buy your copy!)
If you're new here, don't judge me by August. I promise I'm more interesting than this.
Looking over all the photos from BlogHer 09, I'm realizing that I should have spent more time at the Nikon party talking to Carson Kressley and less time downing those Nikon Ikon drinks. I'm a walking advertisement for what not to do when the camera is aimed your way.
Allow me to share my lessons learned from this year's set of photos.
1. Don't get caught with your mouth full of cheeseburger.
Sure, I may have thought I was hot stuff, but that red stapler? Totally upstaged me in this shot. I should have remembered which of us was more popular. I am merely a backdrop for that lovely red stapler.
4. Just because the other person in the photo is shorter than you doesn't mean you should slouch to meet her in stature.
Yeah, um, bad lighting and a half-squat to meet Mrs. Potato Head's height equal me looking nearly as round as her. I should have stood tall and made her stretch to meet me. Surely she's got taller legs stored in her back, right?
5. When shifting to take a photo with a friend, make sure your outfit turns with you.
