Picture Time

I realized it’s been awhile since I posted a few good photos of Cordy and Mira. Let’s be honest, they’re the stars of this blog – I’m only the storyteller and supplier of Goldfish and gummy bears.

I can’t say we’re all looking our best at this time of the year. We’re cooped up, it’s cold outside, and the dry, cold weather is brutal on skin and hair. Still, they somehow manage to look cute.

Super Mira, guardian of the sippy cups:

See that serious face? You know she’s a tough superhero!

Cordy, hiding behind a mop of messy hair after I tried to straighten it (in order to trim it):

She’s only smiling because she doesn’t realize how badly mommy mangled her hair.

Noticeably absent from photos: me. Not after the sleeve of Girl Scout cookies I just inhaled this evening.

I’m peeking out from my winter cave. Rumor has it the warm weather may return this weekend. And hopefully it’ll bring my motivation and energy with it.



Make Sure You Walk Away With The Right Kid

On Friday afternoon I found myself running late after a doctor appointment, rushing home to make sure I didn’t miss Cordy’s bus. She is dropped off at our door, and if we’re not there to get her off the bus, they will only wait so long before driving on to the next stop. In our school district, that means you then have to pick up your child from Children’s Services, which no one wants to do.

I got home right at the time she’s scheduled to get off the bus, which is actually never the time the bus arrives. It has never arrived at that time – it’s usually coming around the curve about five or ten minutes later. I left the front door open to wait for her bus. Five minutes pass. Then ten. At this point I’m starting to wonder if I was too late. But I know her bus driver well enough to know that she’d wait at least five minutes if she happened to get here on time. Where was that bus?

Another ten minutes passed, and just as I was beginning to panic and consider calling the school district to ask where I need to go to get Cordy, I hear the bus coming down the street. And then I see it slowly inching along, pausing at each address, and coming the wrong direction. Ah, it’s a substitute driver today. Now I know why she’s late.

I immediately started to walk out the door toward the bus. I noticed an aide on the bus moving around and doing something, all while Cordy sat in her seat and waved to me from her window. As I crossed in front of the bus to get to the bus door, a taller child in a blue coat suddenly met me around the corner, smiling. This bus carries a lot of children with varying special needs, and this boy didn’t seem to notice or care that this wasn’t his house and I wasn’t his mom.

I peeked up into the bus, looking at the smiling driver and aide. “Have a good afternoon!” the aide yelled to me.

“WAIT!” I yelled back before the door could be closed, “This isn’t my kid.

The aide and driver looked at each other with an amused look. “What?” they laughed. I guess they thought I was making a joke.

“This isn’t my kid,” I said more insistently. “THAT is my daughter,” I growled, pointing to Cordy who was sitting right behind the driver. Cordy was still smiling, also probably thinking this was all a joke.

The aide immediately looked puzzled and yelled for the boy to get back on the bus, quizzing the boy, “Well, why’d you get off the bus if this wasn’t your stop?”

At this point the driver appeared to have a moment of intelligent thought with the revelation, “Oh, so that’s why she was saying ‘Mommy! Mommy!’ when you were walking to the bus.” Um, yeah, ya think? I suppose that would be why she was saying that. Is the school district that desperate for substitute bus drivers that they’ll hire anyone off the street?

Finally, the aide unbuckled Cordy and helped her down the stairs. I held Cordy in my arms as the aide and driver again tried to laugh about the mix-up. I glared at them and walked away, holding onto MY daughter.

It wasn’t funny. It was dangerous, it was careless, and it shouldn’t happen. Were I not all the way to the bus, they could have let that boy off and drove away before I could object. And who would they have given my daughter to? Cordy likely would have reacted the same way the boy did – she trusts adults, and probably would have willingly stepped off the bus, even knowing it wasn’t the right stop.

The district will be getting a call from me on Monday, urging them to make sure their substitute drivers are more careful about making sure special needs kids get to the right home safely. Some kind of safety procedure needs to be in place so that each child is matched up to the right address. I don’t care if it’s a seating chart or names on the seats or some other plan – a simple list of addresses and names isn’t enough.

I was worried that I had missed her bus. But being given the wrong child really scared me. I want to know my daughter will get home safely each day, and I want to trust that her bus driver will take her to the right address and only let her leave when one of her parents is there to take her hand.

Here’s hoping her regular bus driver will be back this week.



Guinea Pig, Part Two: For Reals This Time!

Just before Christmas, Cordy finished the first ten week segment of the clinical research trial I took a gamble on earlier in the fall. The study offered us the chance at parent training in behavior modification and/or a medication that can help attention-deficit symptoms in children with autism. In our case, we were randomly selected for the medication-only group, not knowing if we had the actual medication or a placebo.

At the end of ten weeks, the results were less than encouraging. Cordy’s behavior was practically unchanged. Still unfocused. Still unstoppable energy. Still struggling to finish a task without becoming distracted. But there were a few small changes that showed a glimmer of hope. In that ten week period, she stopped hitting herself, and although she switched to verbally abusing herself instead, it was still an improvement. We also noticed a slight decrease in the amount of “flapping” she does, too.

So did we have the medication? If we had the medication, I felt it was a big, fat failure. I mean, I wasn’t expecting miracles in a pill. I knew it could help calm Cordy and help her focus so she could accomplish more, but I knew it wouldn’t turn her into a typical kid. But I was expecting a little more than a couple of stray behavior changes.

At our last meeting, the doctors in the study looked through all of the data and determined Cordy was a non-responder. As a result, the seal was broken to find out the truth: it was the placebo.

I was a little disappointed that I forced Cordy to go to weekly visits, endure two blood draws (not fun for anyone involved) and take a lot of pills for no benefit. But honestly, it wasn’t that bad. Cordy quickly loved going to “the office” as she called it. She loved “her work” and the student assistants who work there became her willing slaves. All of the staff have been incredibly kind to her. While at each meeting, she was given an unlimited supply of organic fruit snacks, animal crackers, juice, toys, markers and adoring fans. Hell, I kinda wish I got all that stuff instead of a big stack of papers to fill out each week.

But it doesn’t end there. That was just part one of the study. Knowing that she was on the placebo, we are now entering the open-label phase of the study, allowing her to start all over with the actual medication this time. (Those who were on the medication in phase one are allowed to continue on the medication for phase-two.) The dose will be increased ever-so-slowly and we’ll watch her closely for any improvements as well as any side-effects.

I’m back to being excited at the possibilities and yet again a little nervous about medicating my daughter. Only this time I know for certain it’s the real thing. We’ll see what happens.

To end on a cute note: I was told by Cordy’s teachers today that all of the boys in her class are in love with her. Not just love her – are actively IN LOVE with her. They’ve been back from winter break for just two days now, and apparently the boys pester Cordy all day with, “Do you still like me, Cordy?” She’s the queen of the classroom, with five little boys willing to do anything for her. I love that about her – despite her social difficulties, she has an aura that attracts people to her, even without trying or encouraging them in any way. It’s an amazing gift to have.



Happiest Holidays

To all of my friends and readers, happy holidays!

I hope you got everything you wanted this year. I can say with certainty that we did.

Cordy got to meet Santa, loving every minute with him and even interrupting others to go back and give Santa a hug after she opened her gift.


Mira received Thomas the Tank Engine trains, books and even underwear. I think she’s satisfied, don’t you?

Score!

Santa heard my plea and wasn’t about to let me be cut off from my ‘net:

Score!

And Aaron found out two days before Christmas that in the new year he will once again be employed. The new job looks promising, tapping into many of Aaron’s talents, and I hope it will be both interesting and fulfilling for him.

All in all, I’d call it a successful Christmas.

Add to it a lot of good time spent with family, an enormous (and delicious) meal this afternoon, and a lot of excitement, and you can see how Cordy ended the day like this:


What about you? Any good presents/stories to share?



Lady Gaga for Kids?

I think I’m ready to submit my application to the Bad Moms Club.

I can only take so much kid music while driving before I have to switch my iPod to something that isn’t aimed at the preschool set. Which means Cordy is occasionally forced to listen to songs I like in the car. However, she’s never really shown any signs that she’s paying attention to my music. Or at least I thought she wasn’t listening – there’s one song in particular that she’s obsessed with now. A song that she probably shouldn’t like so much.

As if that wasn’t bad enough, she’s indoctrinated her sister, and Mira begs to hear the “Rah-ah-ah” song anytime we get into the car:

Yep, they both love Lady Gaga. And not just that song. Paparazzi, Poker Face, Just Dance – all songs they love to hear. It seems we skipped the Miley Cyrus, slightly-inappropriate-for-preschoolers craze and went straight for the totally inappropriate. They only get to hear it in the car, and neither of them have watched the video, although Cordy has seen photos of Lady Gaga.

The good news is that Mira totally doesn’t understand the lyrics, and Cordy tends to make up her own words to the tune rather than sing what she’s hearing. (Other than constantly singing the “Rah-rah, rah-ah-ah” part, which she does all the time.) I actually think she isn’t listening to the words, but instead likes the beat of the music and the repetition of the rah-ah-ah part.

(There is one pop song she’s learning the words to, but it’s far more G-rated and a song that I’d consider safe for all ages. Also, a great song.)

I guess I can’t be too hard on myself. I remember being a little kid and singing along to Madonna’s Like a Virgin. I didn’t even know what it meant at the time, but hey, it was a catchy song and she was pretty and dressed so cool with 100 jelly bracelets on her arms. And I turned out OK, right? Right?

Note to Lady Gaga – please make a children’s album that’s just as good as your current one. My five year old thinks you’re awesome. And pretty. And she loves how you dress.

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