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Dec 7, 2010

Roller Coaster of Autism

December 7, 2010 By

Raising a daughter with autism is a lot like riding a roller coaster. One minute you’re climbing high, watching your child make huge gains and seeing nothing but the blue sky above you when it comes to success. Then the next minute you’re hurtling downwards, out of control as you watch the ground come at you quickly, closing your eyes to block out your fear of all that progress crashing down with you, but quietly wishing you’d hurry up and hit bottom already. Then suddenly you pull up again, grateful to be released from the free-fall, wondering if you can stomach the next curve.

The past few weeks have been rough for Cordy, and as a result rough for us as well. After coming off the high of finding out that our daughter is excelling in academics and hearing so much praise from her teachers, we’re seeing a totally different child at home.

It’s hard for me to put into words what’s different about her. She’s…moody. The slightest verbal correction sends her either into a fit about how she’ll never get to do [insert activity she was doing] ever again, or sometimes a panic attack that we’ll hit her or send her to jail for some minor offense. (For the record, we don’t hit her. Just wanted to make that clear up front.)

She’s always been someone who sees only black and white with most issues, but lately everything has been even blacker and whiter. There is only one way to do things, and you can’t tell her otherwise. Any change in direction and suddenly it’s like the world is splitting apart at the seams.

She’s stopped sleeping again. She goes to bed at her normal time, but when I leave for work I’ll often still hear her talking in her room. On nights when I’m home, I sometimes wake up at 2am or 3am and still hear her talking to herself in her room. And yet she still bounds out of her room at 6:15am. Occasionally she’ll crash hard in the middle of the day – about a month ago there was a tornado warning while she was at school, and apparently while they crouched in the school hallway, sirens blaring, she fell asleep. But there seems to be no pattern to her sleep cycles.

Cordy has also started destructive behaviors – she’s unraveling socks at an alarming rate now. She insists on wearing socks at all times, but she has been putting holes in at least a few every week, sometimes completely unraveling the sock down to the bottom of the cuff. She’s also scratching herself raw at times and picking at her lips, sometimes until they bleed.

What bothers me the most is that Cordy wants to be alone even more lately. She comes home from school and usually within the first 15 minutes, she’s either absorbed in an activity book, or she disappears to another room to “make up her stories.” She likes to create stories, but she insists on making them in private and then she doesn’t like to share them. If anyone should come into the room, she gets upset and demands they leave. Peeking in on her, I often find her pacing back and forth, flapping her hands and talking to herself, usually quoting lines from TV shows. This is often what she’s doing in the middle of the night, too.

Sometimes I get so frustrated that she won’t let me into her world. If I ask her how her day went at school, she responds, “Mom, I don’t want to talk. I just want to watch TV.” If I ask her how she’s feeling, she whines and tries to avoid me. When I ask her to tell me one of her stories, she tells me that she doesn’t like to tell them to anyone. I feel like I can’t get through to her, and I sometimes worry that feeling will create a divide between us. I know I shouldn’t take it personally, but when your 6 year old keeps telling you to leave her alone, and you go an entire night in different rooms, it starts to have an effect.

Many of these behaviors have been with her for some time, but over the past few weeks they’ve intensified to the point that sometimes she’s incredibly difficult to live with. I can’t pinpoint what’s causing these changes, either, which leaves me feeling helpless. It’s quite possible the overstimulation of the holidays is affecting her, but I don’t know how to tone it down any more to keep her happy. Something at school could be affecting her, too – she never seems as happy when she gets off the bus anymore.

I really had no point to this post. I just needed to get this off my chest and admit that while I love my daughter, I’m having a hard time dealing with her lately. She was so happy earlier this year and now I feel like she’s morphed into some sullen emo teenager who is angry that we never let her do what she wants and never leave her alone enough. I want my smiling little girl back (I have tears in my eyes as I write that because I know what a little ray of sunshine she has been) and I want her to be at least a little more interested in her family.

I understand social interaction is hard for Cordy – such is the nature of autism – but I refuse to let autism take her away from me. I’ve been crazy busy with work, but I’ll somehow find the time to do more for her if needed. But what is there to do? I have no idea what steps to take next.

Back to that roller coaster image, since I have no idea how to even end this stream of consciousness: my eyes are currently squeezed shut tight and I’m hoping this is just a small dip in the ride and soon we’ll be on that upward climb again. Because right now the ground is a little too close for my liking.

Filed Under: Autism, Cordy, daily life


Dec 1, 2010

Good Thing We Already Had The Backup

December 1, 2010 By

Like many people, I love a good Black Friday sale. Last year, Aaron was the Black Friday king, making it to 5 stores (all with different opening times) and scoring everything on our list.

This year the deals weren’t as appealing to us, but there was one item we had our eyes on: a new TV. There was nothing wrong with our old TV – it was a 32″ CRT model (the ones with the big tubes in them that weren’t flat, for you young’ins out there) and worked perfectly well. Except that any movie in widescreen was exceptionally small on the screen, and even though we have a lovely Blu-Ray player, the TV didn’t display it in that crystal-clear precision it’s known for.

So Aaron and I agreed that a new TV would be our Christmas gift to each other this year. After all, I have a steady, as-secure-as-you-can-be-in-this-economy job, and Aaron is working at the moment as well. We have saved a little money, and it seemed like the perfect splurge, seeing how we’ve been drooling over those shiny, new flat panel HD TVs for some time now.

While we like the rush of the Black Friday excitement, I knew TVs were going to be the hot item this year, and I wasn’t so thrilled with the prospect of camping out all day at a store to be one of the 5 people to get one at a good price. But then my friend Jenna shared on Facebook that Sears would have an excellent TV on sale for an incredible price the Sunday before Black Friday.

We waited for Sunday. And then I searched TVs on the Sears website and found it. It was an incredible deal: 46″ Sony LED TV for nearly half the retail price. Perfect. (BTW, thank you for the tip, Jenna!)

Instead of waiting in line for hours, we simply walked into the store, explained which TV we wanted, and walked out 15 minutes later with our TV. No Black Friday sale could match that.

We planned to set it up Friday night. I carefully cleaned around the TV stand, preparing the space for the new TV and dusting off the old one. “What should we do with this old TV?” Aaron asked.

“Let’s just offer it up on Facebook,” I suggested. “I’m sure one of our friends could use a TV. We’ll just put it in a corner until someone can come get it.”

Here’s the dramatic part of the story, though. You see, unlike these beautiful new flat panel TVs, the old-style televisions with their tubes and lack of flatness aren’t exactly lightweight. Actually, they’re about as heavy as large granite boulders, and roughly as easy to carry. I knew our 32″ TV was heavy, and I was already dreading trying to lift it.

Aaron stood on one side and I stood on the other. We got our hands under it and slid it a little to the edge of the stand. I was already trying to prepare myself for the weight, telling myself it was only a few shuffle-steps to get it across the room and set it down. Aaron asked if I was ready, and I nodded, pulling up on the TV with all of my strength.

We had just cleared the TV stand when I became certain this was a bad idea.

“I can’t hold it! I’m losing it!” I cried as my fingers started to slip. I tried to get my knee under it to help prop it up, forgetting that it weighed two tons and my knee was just as incapable of supporting two tons as my hands were. At that point I pulled my knee back up and tried to just get it gently down to the ground. But then my fingers lost their grip entirely.

I then learned that TV cases aren’t made nearly as well as I had hoped.

The case shattered into about a million pieces as it hit the ground. Aaron began a long string of cursing while I held my fingers – now missing a few layers of skin – and apologized that I wasn’t strong enough to hold it.

So much for giving it away on Facebook.

But then we had a new problem. Any movement caused more of the case to crack off, and with the case half shattered, it was now impossible for anyone to lift. And with sharp plastic shards everywhere, it couldn’t stay in the living room for the kids to find.

I suggested we slide it out to the garage. Aaron found a large piece of cardboard and we carefully slid the broken TV onto it. We slid it across the carpet about 5 feet before the TV shifted and tipped over, with a loud crackle of more splintering plastic, followed by more cursing from Aaron.

It was obvious that the case was only getting in the way, so Aaron took out some frustration by ripping off the remainder of the case from around the metal and glass parts of the TV and breaking the wires and circuit board to make it easier to transport. At that point we were able to successfully drag/scoot/slide it to the garage.

Now we have a useless, broken TV in our garage. But hey, the flat panel TV was a breeze to set up!

Anyone want a TV we’ll describe as “needs work”?

Filed Under: Aaron, clearly insane, daily life Tagged With:


Nov 23, 2010

Some Things Never Change

November 23, 2010 By

Mira, 2 months old:

Mira, 3 years old:

Good to know I still get a “thumbs up” from her.

Filed Under: Mira


Nov 16, 2010

A Day Out With Cordy

November 16, 2010 By

Over the weekend Mira was invited to a birthday party for a little girl in her preschool class. As any 3 year old would be, she was proud she had an event to go to, something that was just for her as well as her parent escort.

I decided to make the most of it and have a one-on-one morning with Cordy. Thanks to a little sister who insists on always being on my lap or hanging off of me whenever we’re at home, I feel like Cordy and I often don’t get much time to chat and bond. This would be our chance to hang out with no interference from Mira, where she could have my undivided attention and I might get the chance to see what’s going on in that pretty little head of hers.

I left the plans open to her, and she decided we were going to the zoo, followed by lunch at Bob Evans. Thankfully, the forecast was for a warm, sunny day – rare in November – so I happily agreed.

Once at the zoo, Cordy was intent on riding all of the rides. The Columbus Zoo has an area called Jungle Jack’s Landing that features carnival-type rides for kids, but this area was blocked off with a sign announcing it was closed for the season. Cordy was disappointed, but I suggested we try to look at some of the animals while we were there, since, you know, it IS a zoo.

With no little sister to object, Cordy demanded we go to her favorite places: the fish and the snakes. For some reason, those two exhibits are her favorites. She loves watching the fish swim around, “driving” the boat in the manatee area. We talked about all of the different fish, and she oohed and aahed over the pretty colors of the coral in the tank.

In the reptile house, she pushed all of the buttons in the information area before moving on to the display animals. She chattered about each one, pointing out one was really long, another was hiding in a tree, and yet another had a funny shaped head. We had nowhere to be, so I let her go at her own pace as she went through her normal routine of pushing buttons, asking me to point out where we live on the map, and then talking about each snake as we walked past them.

Outside of the manatee exhibit, I also let her climb on the manatee sculpture – something I’m usually unwilling to wait around for. But it wasn’t crowded, so there was no wait.

(Cordy, the manatee rider!)

After that, Cordy wanted to ride the carousel – the only ride open in the zoo that day. I purchased a ticket for her and we waited in line. When did she get so big that she now wants to go on the carousel? I remember her crying at the thought of riding it years ago. I remember sitting with her on the bench seats of the carousel because the up and down motion of the horses scared her too much. Now here she was picking the horse she wanted, holding on tight and waving to everyone instead of keeping a death-grip on me.

Having seen her favorite animals and taken her ride on the carousel, Cordy announced it was time to go to lunch. But not before asking to pose (yet again) with her favorite penguin statue.

(This well-loved statue could use a little paint.)

We then went to Bob Evans, where Cordy got to sit on her side of the little booth with no one next to her. “Mom, I’m all alone over here,” she announced, “Can’t you sit with me?” I explained that there was no room for me over there, and that she was big enough to sit by herself now. Stretching out her arms, she decided she liked all of the space to color and work on her activity sheet.

After the meal, Cordy begged for dessert. I normally say no, but since this was her special day, I gave in and agreed. She loved every bite of her sundae, even as I cringed and realized the coloring in the hot fudge and cherry might provoke a behavioral reaction later.

(Side note: it did. She didn’t act the same the remainder of the day and had a fierce meltdown that night over spelling a word wrong. My lesson from this? Even if it’s her special day, we still have to hold firm to rules about “bad” foods.)

(And notice that big gap in her smile – she lost both front teeth in the last 2 weeks!)

On the way home, she fell asleep in the car, but not before telling me that this was “the best mommy-Cordy day ever.”

And it was.

I don’t know how many more years she’ll want to spend time with me in public, but I’ll selfishly hang onto these moments for as long as I can.

Filed Under: Cordy, daily life, family time, growing up, love, memories


Nov 10, 2010

Face the Truth

November 10, 2010 By

So I’ve noticed several bloggers are taking part in a 30 Days of Truth blog meme. It’s a nice way to give yourself 30 days of blogging prompts, and while I’m all about jumping on board that bandwagon, there’s no way I’m doing 30 in a row. That would be too much commitment and way too much emotional sludge for me to slog through at once. I’ll just do them here and there and hopefully get through all 30 before I forget what the remaining ones are.

Day 1: Something you hate about yourself

They decided to start easy, didn’t they? I could write a book about all of the things I don’t like about myself. From my dull, flat hair, past my big nose and all the way down to my monster feet, I’m good at finding fault with myself.

But what I really dislike is my lack of social understanding. The more I look inward, the more I can begin to understand and accept that I have a daughter with autism. My daughter’s pediatrician even admitted she thought I had Asperger’s. And as Cordy gets older, I’m starting to see the awkward moments I suffered through as a child relived by her.

I’ve never been popular. I was always the kid on the outside, wishing I could understand how to do the “right” things to be liked by others. My interests were never popular interests. I had trouble being witty on the spot, and often missed the social cues that I wasn’t wanted in a group.

I was told I was a freak and a weirdo, and I was bullied and shunned all through school for being different. I tried so very, very hard to fit in, mimicking others yet never quite getting it right. I couldn’t understand what I was doing wrong to never earn acceptance. I remember feeling suicidal more than once as a child and a teen, always confused about how I could be so amazingly smart in school but couldn’t figure out how to get people to like me.

As an adult, I’ve learned to blend in a little more, but I’ll admit I still don’t understand people. I’ve never figured out the secret to being popular, and sometimes it hurts that I know I’m rarely at the top of anyone’s list of people they like to hang out with. In public I make an effort to conceal some of my quirks.

When I’m funny, it’s generally on accident. (Ask our friend Baca about the scissors sometime. I made everyone in the room nearly suffocate from laughing so hard that day.) I suck at predicting how people will react to something.

I try to accept my geekdom, though. (The Big Bang Theory is one of my favorite TV shows and I understand nearly all of the humor on that show – Sheldon fans unite!) I’ll freely admit to strangers that I’m socially awkward at times, or that I need to drop out of a conversation quickly because I’m feeling overwhelmed. I know my brain doesn’t work the same as others and I’m not ashamed to admit it anymore. After all, I have a daughter with autism, and I want to make sure she doesn’t grow up thinking she’s a worthless freak like I did. Thankfully, being different is more accepted today than it used to be, but we still have a long way to go.

I’m sure it sounds like I’m being hard on myself, and I might be. There were kids who were just as unpopular as me in school. (A few possibly more unpopular.) But if I could change one aspect of myself, I’d love to be that person who can expertly navigate the world of popularity, winning friends and influencing people with ease, instead of the person on the edge of the social circle, wishing I knew how to be a little less awkward.

My personal anthem at the moment:

Filed Under: me me me, meme time, memories