No One Said Special Needs & Smart Can’t Go Together

Last Wednesday was Cordy’s first day of school, and while she had a lot of anxiety over it – like she does about anything new – I was feeling just as much anxiety as I stood next to her waiting for her bus. She tried her best to be calm about the whole thing as she tried to hold still while I took a million photos.

My thoughts, though, went something like this: Would she throw a fit about riding the bus? Would she melt down when she got to school and couldn’t go to the room she was in last year? Would kindergarten be too hard for her? Would her new teacher treat her well? Would I be able to stop asking myself questions long enough to notice she’s getting on the bus?

Oh. Well, uh, that was easy.

I went to sleep for the day, expecting to hear the phone ring at some point with some question or complaint about Cordy’s behavior. But there was no call.

When the bus brought her home, she was clearly tired but full of smiles. She said her first day had been great, and when asked if she wanted to go back again the next day, she replied with her usual, “Well, uh, yeah, that would be OK.”

The note from her teacher gave me a lot of hope. The teacher said she had a good day, and she mentioned Cordy seemed to have good reading skills when they were assessing her abilities.

The next day was much the same. The note home was even more promising, stating that Cordy was asked to read a 1st grade level book and had no trouble with it.

Friday was even better. The teacher was both surprised and delighted to report that Cordy read another 1st grade level book and answered the comprehension questions perfectly. She mentioned that Cordy is still whining whenever she’s asked to do something, but other than that she’s adjusting to the new routine with no trouble.

Of course, I have no idea if the teacher is glossing over any actual behavior problems or not. But I don’t doubt that Cordy is impressing her with her reading skills. We’ve suspected she could read for some time now, but when pressed to show off her skills she generally pretended like she couldn’t read. (How modest.) I’m honestly more surprised that the teacher is surprised. Surely she’s read Cordy’s evaluation report and knows that her autism has little influence over her cognitive abilities.

I’m outlandishly happy that Cordy is adjusting so well to kindergarten. Crazy, over-the-moon happy.

More than once I’ve encountered people who assume that just because Cordy has autism, she will somehow never be able to learn anything, will never graduate, and will spend her life dependent on her family. Autism seems to be a death sentence to them, or at least the death of any kind of promising future. When we first got the diagnosis, I remember mourning her potential, too, worried that she would never be able to live a “normal” life. But it’s soooo not true.

Cordy’s autism may affect the way her brain functions, but it doesn’t affect her ability to function. She can still learn, she can understand logic at an age-appropriate level, and while she has some unusual sensitivities and requires some different methods to learn, she can keep up with her peers in classwork.

Even I don’t always understand the way Cordy thinks, but she still manages to figure everything out. She resisted learning to read when we attempted to work with her, instead choosing to teach herself. She doesn’t appear to understand phonetics, and as best I can tell, she reads by memorizing entire words. But she still learns it all, even if it’s not how most people do it.

I like to think of it this way: just because most of us take the interstate to get to the park doesn’t mean that taking the back roads won’t also get you there. It might take a little longer, and your travel experience will certainly be different, but you’ll reach the same destination. 

Cordy’s travels to the park probably involve singing “My Way” with Frank Sinatra as she cruises along the twisting, hilly roads. But once there, you know she’ll have stories of a great adventure along the way.



Old and New

In all of the stress I’ve had over Cordy starting kindergarten this year, I’ve barely mentioned that Mira will be starting a whole new class as well. Actually, TWO new classes.

Last spring, Mira went for an evaluation with our school district to see if she should be placed in special needs preschool this year. There’s no chance this kid has autism – as the evaluation clearly proved – but her speech issues persist. She has speech apraxia, meaning that while she can hear and understand everything you say to her perfectly, she can’t say anything back to you perfectly. It comes out garbled with a lot less consonants than words should have. She’s made a lot of improvement, but her articulation has a long way to go.

Mira knows she is hard to understand, and it frustrates the hell out of her. Kids her age are supposed to be speaking in 3-4 word sentences, but this kid wants to speak in full monologues. She has an incredible vocabulary (when you can understand her) and her grasp of grammar and sentence construction is sometimes better than Cordy’s. You just don’t know what she’s saying, requiring her to repeat herself many times and often rephrase her statement using synonyms that are easier to pronounce. She’s got mad language skills, if only she was understood!

It was determined that Mira needed to be in special needs preschool this year so she could receive the speech therapy she needs. We had been taking her to private speech therapy, but after Aaron was laid off in May we had to drop it because we couldn’t afford the $115 per session. (The bill hurt only slightly more than the thought of cutting off such a vital service for Mira, but we decided she would probably rather keep a house to live in rather than speech therapy, so we went with that option.)

The best news was that Mira’s teacher will be the same wonderful teacher we had for Cordy. We’re thrilled, the teacher is thrilled, and Mira is thrilled. Even Cordy is slightly thrilled, as long as we take her to visit Ms. W. now and then.

However, the school district’s special needs team strongly encouraged us to also seek out a traditional preschool for Mira for the other half of the day. They pointed out that with a quick mind like Mira’s, she will need to stay stimulated and she might find special needs preschool a little boring. We took their advice, and so Mira will be spending the first half of her day at her current preschool before going to the public school for afternoon preschool.

On Friday, we were invited to a Meet the Teacher day at Mira’s current preschool. As we walked down the hall to find Mira’s new room, I quickly spotted her room (Fishies FTW!) but then saw who was waiting inside. It was the teacher Cordy had for after-care when she was in summer camp last year. The teacher who clearly didn’t think Cordy belonged in a typical-kid camp. This same teacher is now Mira’s preschool teacher. Eep.

Aaron and I gave each other knowing glances as we introduced Mira to the room. I’m still not sure how I feel about having someone who wanted nothing to do with Cordy teaching Mira, but I’m going to try to suck it up and give her another chance. I can already tell she and Mira will butt heads – they’re both strong personality types. Mira is a child that you have to sweet talk or flatter to get her to do what you want – simply demand for her to do something and she’ll give double the attitude right back to you.

Mira starts class tomorrow for her private preschool, and then starts her other school later this week. I can tell she’s already giddy at the thought of riding a school bus and being in a “real” preschool class. My baby is determined to grow up quickly, and I only wish she’d slow down a little.

I’m going to go cry in a corner now.



If I’m Wrong, I Don’t Want To Be Right

Cordy begins kindergarten next week. I know many moms tear up at the thought of the start of “formal” school, and I’m holding in the water works, too, although for different reasons. After all, Cordy’s nearly six years old – she could have started kindergarten last year, but Aaron and I made the choice to give her one more year to prepare, holding firm in our belief that she would be ready for a mainstream classroom this year.

My tears come at the reality that she will be in a special-needs kindergarten class this year. I didn’t want this. I’ve spent the last three years convincing myself that everything will be just peachy for Cordy when she gets to kindergarten, that all of this intensive therapy and special-needs preschool will produce a child who will glide into a kindergarten classroom of typical children, place her safety scissors and crayons in her desk just like everyone else and blend right in with the crowd.

Message from reality, ma’am. It says: stop being a twit and take a hard look at yourself, ya weirdo. Blend in? Ha.

Stupid thinking, I know, but we were told so often over the last three years that the goal was for Cordy to mainstream at kindergarten. Goals aren’t promises, though, autism isn’t something that just disappears when she reaches kindergarten and I need to stop treating it like it is.

I didn’t fully accept it when we were told last spring that Cordy needed to stay in a special-needs classroom, and I still struggle with accepting it today. Every “but…” springs to my mind. But she’s smart. (Dumb excuse – there are plenty of smart special-needs kids!) But we’re told all the teachers in the school love her and think she’s so sweet. But she spent a summer in a class with typical kids and had no issues at all. But we didn’t have a single meltdown ALL summer. But she doesn’t qualify for speech therapy any longer, and occupational therapy has been reduced to only as-needed. How can they say she belongs in a class of special-needs-only kids?

Still they insist she isn’t ready, and they also explain that she is on an “inclusion track” where they will try to slowly introduce her to mainstream kindergarten. I’m sure this is brilliantly successful for some kids (and know it works very well for introducing animals to new situations), but I don’t know how well this will work for Cordy. After all, part of her autism is her desire for routine. She can handle transitions with some warning, and is even getting better at adjusting to small sudden change, but constant major changes seem like a big deal to me.

So we’re going to get her used to one classroom for several weeks, then expect her to go behave in another class, with a wildly different routine, for 15-30 minutes every day or two, and yank her out if she doesn’t cooperate? Um, I know I’m not an expert at this, but I think she’s going to not cooperate. Just a hunch here.

My idea was to put her in a mainstream class, accept that the first few weeks will be an adjustment (just like any kid starting kindergarten, I’d guess), providing aide support if needed, and then watch as she adapts and rises to the challenge. After all, it worked this summer – she is a smart kid, and she can figure out how to act if given the chance to learn how the class works. Coddling or baby steps generally doesn’t work for her – she’s more a “sink or swim” kind of girl. (Even if she does get mighty upset about being – figuratively – shoved in the water sometimes.)

But I’m only her mother, and it’s been made clear that I don’t understand how the system works. So I will (grudgingly, and with a lot of hovering) let them do it their way for now and evaluate the results in a couple of months. If it isn’t working to our satisfaction, or if I feel Cordy is falling behind academically in any way (and she’s already well ahead of the standard kindergarten curriculum), we’ll be calling her support team together and finding another option.

And if it turns out that this was the perfect way to do it, you’ll all be reading my admission of being wrong. In this case, I want to be wrong. I want to write an embarrassed apology on this blog for my incorrect assumptions and how silly it was to not trust the experts.

I really, really, really hope I’m completely off-base and Cordy rocks the inclusion track all the way to full inclusion faster than any other student they’ve ever had. I hope she’s such the perfect model for the inclusion track that academic papers are written about her experience.

Nothing would make me happier than being wrong. And knowing Cordy, she’ll find some way to do it, because she’s just that damn awesome, and she loves to prove me wrong.

 (photo credit: Heather Durdil)


Heaven Help Us When She’s Sixteen. Or Four.

You’d think that with a second child I’d feel like less of a novice mother. I’ve been through it all once, so the second time through is just a refresher, only this time I know what mistakes not to make, right?

Right?

Ha.

Miranda is a child so different from Cordelia that I often find myself wondering if Cordy is really mine and I imagined the whole idea of raising her from a baby. Because Mira makes me doubt all of my parenting knowledge on a daily – hourly – basis.

When Cordy was three years old my primary concern was keeping her from completely losing it and slipping into a violent meltdown. Oh sure, I also had to deal with feeding her because she wouldn’t use a spoon, and changing diapers because she had no interest in potty training, but the goal of each day was to get to the end of it without having to restrain her so she didn’t crack her head open from banging it into the floor. The biggest fight we had was keeping the TV on Noggin versus some non-kiddie-crack TV.

Sounds tough, right? I had no idea how easy I had it.

Because with Mira, three years old is totally different. Now I have to deal with refusing to get dressed because she wanted to wear the PINK shirt, not the blue one. And attitude because I dared help her take off her pull-up when she could clearly do it all herself. And refusing to eat her yogurt because I had the nerve to try to help her with her spoon. And dinnertime cries of, “No! I wan appasace not yogut! I change mah miiiiiind!”

And making me go back into the house to find her damn sunglasses, because the sun is in her darling eyes and we wouldn’t want her to go blind, right? And insisting on buying only PINK clothing when we go clothes shopping, a task that she insists on joining me for and during which I endure the semi-incoherent Mira babble of how those leggings match that dress and how she LOOOOVES those PINK shoes.

It’s exhausting.

But now we’re truly heading into uncharted waters, as she’s decided to go exploring her surroundings in ways that Cordy never attempted, either because she wasn’t interested or because she didn’t notice.

Two weeks ago I noticed Mira’s Thomas the Tank Engine pajama top had a couple of holes in it. When I asked her what happened to her shirt, she said, “Da kitdie did it.” It seemed odd that a claw hooked in a shirt would cause so much damage, but I shrugged and chalked it up to cheap manufacturing.

Then a few days later I found Aaron’s beard trimming scissors on the floor of the bathroom. And new holes in her shirt. It would seem the cats had somehow developed opposable thumbs and exacted their revenge on Mira – who never lets them into her room – by sneaking in at night and cutting holes in her shirt with the scissors.

Or Mira just didn’t want to tell us she experimented with scissors. I’m just thankful she didn’t cut her hair.

And then today, Aaron came downstairs with a puzzled look on his face and asked, “OK, which little girl has been using my toothpaste?”

Cordy immediately answered, “Not me!” and Mira copied her with the same response, trying her best to look like she didn’t know what he was talking about.

“Well, one of you has been into it, because you forgot to put the cap back on. Now who did it?”

Cordy again proclaimed her innocence, and Mira then looked at the ground, hands behind her back as she kicked at nothing in front of her and quietly replied, “I di-it.”

“Why were you playing with the toothpaste?”

“I bwush my teeh,” she replied, as if to say duh, what did you think I’d do with it? Only she had no toothbrush in that bathroom. It soon came out that she was sneaking into the bathroom in the early morning and putting toothpaste on her finger and pretending to brush her teeth. You know, since we locked up the scissors already.

Then this afternoon, I walked into the living room and sat down, and Mira quickly climbed into my lap. I immediately smelled something odd, but couldn’t quite place it. I knew it was coming from Mira, but couldn’t figure out what the strong, chemical-like smell was.

And then I saw the travel size bottle of Downy Wrinkle Releaser on the floor. The scent suddenly had a name.

“What did you do?” I demanded to know.

Mira immediately started her – now routine – answer of, “I sowwy, I sowwy, I sowwy!” She’s learned to begin with a flurry of sad-voiced apologies and hope her cuteness will keep her out of time out. I then discovered through interrogation that she thought the small spray bottle was just like my “soap” (aka the spray hand sanitizer I often use) and had decided to spray herself with it during the 5 minutes no one was looking. At least her dress no longer had any wrinkles in it.

The worst part of all of this is that we had no idea Mira could reach or would even be interested in this stuff, and how she gets into it without us seeing her. She’s like a ninja. The bathroom items were far back on the counter, beyond her reach and likely beyond her site without a step stool. The wrinkle releaser was in a drawer. Now I’m forced to look at everything and wonder how long until she figures out the childproof lock on the cabinets under the sink? Would she want the pack of matches next to the candle on the fireplace mantle? Could two step stools stacked on each other be enough to reach that high? What if she got a stick to knock them down while balancing on two step stools?  

Maybe I baby-proofed the house better with Cordy? I don’t remember it being any different than now. Or maybe I just had no idea what to expect when raising a typical child? When your first child has autism, you come to accept her quirks and different path of development as your own personal norm. So then a neurotypical second child comes along and suddenly you’re not feeling so smug when your friend complains about her child giving her dolls a haircut and coloring on the walls with crayons, because your second child is now decorating her skin with permanent marker and trying to shave the cat with your razor.

I don’t remember this chapter in the parenting handbooks.

“I gonna gwow up biiig wike mommy an daddy an go to work as a supahewo and dwive a biiiig PINK car!”
– actual life/career planning quote from Mira 


Social Media Introduces, BlogHer Unites

Disclaimer: if you didn’t attend BlogHer, I apologize in advance for the love fest about to follow. It doesn’t mean that you aren’t special to me, too. You just need to live closer.

I think that not only do I need a disclaimer to my BlogHer recap every year, but I also need my own personal disclaimer when I return from BlogHer. Something like Disclaimer: Expect me to be moody, pouty, low-energy and have at least one explosive crying fit post-BlogHer. Placate with kind words and chocolates for one week until back to normal.

Because honestly? After spending several days with friends – many of whom I only get to see once a year – I’m often hit with a mild depression when it’s over and I have to return to my normal life.

This year, on the last day of BlogHer, I sent out a tweet that simply stated: “I don’t want to go back to my real life tomorrow. I like my virtual life & friends too much. #BlogHer10” 

Soon after, one of my twitter followers responded with, “@mommystory That’s kind of a sad commentary on social media.”

I was puzzled. Clearly he didn’t get it, and it forced me to think about what I had written and why I felt that way.

It wasn’t a sad commentary on social media at all. Instead, it was a sparkly, shining example of the good that can be found in social media, all brought together in one conference.

My “real life” is filled with a lot of ordinary, with a smattering of extraordinary here and there. I do a lot of mundane tasks each day: I go to work, I do chores, I drive my kids to and from activities, I buy groceries, etc. I don’t get the chance to talk to representatives of major corporations or government agencies on a regular basis. When I buy my groceries at Kroger, the cashier doesn’t care what I think of the store’s expansion of their organic section. I doubt my daughter’s school principal will want to make a video of me sharing my views of the district’s special needs program to then present to the superintendant.

But with social media, my little voice is given a megaphone to be heard loud and clear, and no louder than at BlogHer, where companies and bloggers come together. I was interviewed by three huge companies at BlogHer this year (two of the videos are online), and had the chance to speak with several more. My feedback (along with that of other bloggers) a few years ago helped guide a company to create a better product that they presented to us last year at BlogHer. When Aaron was laid off in 2008 and we found ourselves without health insurance, CNN contacted me and our story was one of several that would be an early warning of what was to become the recession.

Our voices do have power, especially when used together. At home I may be a shy nurse, going back and forth to work and quietly raising my daughters in Columbus, Ohio, but with social media I have the opportunity to yell and be heard around the world. I am a smart person with good ideas (not trying to brag, I swear) and my voice shouldn’t be limited to Columbus, Ohio. With social media, it doesn’t have to be.

As for missing my “virtual” friends, I’ll just say that it’s very possible to miss someone you see once a year just as much as someone you see every day. In my “real life” I do have a few best friends and several other good friends that I share many interests with. But the majority of my real life connections are based primarily on geography. The pool of potential friends and acquaintances is limited by distance and location.

I grew up in a small Ohio town and making friends in my early years was terribly hard. I had little in common with my classmates and just didn’t fit in. But what could I do? There weren’t that many other kids my age, leaving me with a couple of friends who had some shared interests and otherwise a class full of people who simply didn’t understand me.

Online, though? My social net is so, so wide. You can bet that I’m going to find other moms who understand what it’s like to have a child on the spectrum and who also have a love of showtunes and Lady Gaga. (And maybe have even dressed up in renaissance clothing, too.) The pool of like-minded (or at least complimentary) individuals is exponentially larger. I can find my tribe beyond the boundaries of city limits and miles.I now have friends in California, Florida, Massachusetts, Minnesota, Canada and everywhere in-between.

When I’m at BlogHer and can’t make it across the lobby of the hotel in under an hour because I keep running into people I love, I’m reminded of how thankful I am to social media for introducing me to these intelligent, interesting and strong women (and a few men). The hugs I gave out were absolutely genuine and from the heart. I treasured each spontaneous conversation I participated in, soaked in my time strolling New York with women I usually only see through a computer screen. When my schedule forced me elsewhere, I felt awful saying goodbye to whoever I was with, worried that we wouldn’t get another chance to chat that weekend.

It didn’t matter that we met online – in person we were like old friends, completely comfortable with each other with no pretense of formality. After all – we’ve already bared our souls on our blogs, right? If anything, this was a chance to deepen friendships, sharing personal stories that are too personal even for our blogs. And once those connections are made – sharing love, heartache, tragedy, hopes, fears – you don’t want to let go.

So yeah, I didn’t want to leave BlogHer. I didn’t want to put down that megaphone. And I didn’t want to leave good friends behind with only the hope that we would see each other again soon – maybe next month if they live in or near Ohio, maybe at another conference, maybe next year or longer.

I only wish I could find a way to merge my virtual life into my real life, but I doubt I can put up a good enough argument for everyone to move to Ohio. These voices, these personalities – who would want to leave them all behind?

So maybe my twitter follower misunderstood me. I do love my friends and family in my “real life” and I’m glad to be back to some of my routine (not the chores, that’s for sure), but four days is not enough time to cram a year’s worth of opportunity and friendship into face-time.

It was an awesome BlogHer. And I can’t wait to see all of you again soon.

Photo credit: Jenna Hatfield

  Photo credit: Michelle Lane

 (and everyone else I didn’t get photos with!)