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Sep 9, 2008

The Age of Worry

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Today I took Mira to her first Mommy & Me class. One of Aaron’s relatives runs the class, and even though Mira was a little young for this group, we were certain she could keep up with the other kids. Mira was a little confused by what was going on, but she enjoyed herself and I think each week she’ll get more comfortable and play along.

Mira is now 15 months old (I know – where has the time gone?) and I can’t help but compare her to Cordy at that age. Mira has been walking since before her first birthday, and is currently working on building up speed to run. She still won’t say a word, or at least a word we can comprehend, but she has a sharp mind that follows everything we say. She’ll nod her head yes or no to any of our questions, and finds other ways to make her thoughts known. She’s smart, stubborn, very independent, and loves to see new people.

The only thing she has in common with Cordy at that age is the last sentence. Cordy didn’t take her first independent steps until she was 15 months, and she was talking up a storm by this point, with a vocabulary of several words and the ability to count to 5. But she was social. She loved to be out in public, just like Mira.

And then between 15-18 months, something changed in Cordy. Her social nature turned inward, with only those who saw her regularly getting any kind of notice. She wasn’t scared of anyone, but she didn’t care to interact with anyone, either. Eye contact was minimal. Where she used to notice other kids, she now looked right through them most of the time. Tantrums escalated over the slightest thing, which we dismissed as nothing more than normal toddler tantrums. While she could walk, her fine motor coordination was poor. She didn’t get into things like most kids – she was content to sit and examine the toys in front of her.

Play became more linear, either focused on counting items, lining them up, or stacking them. There was little imaginative play. Her vocabulary increased, but I noticed the sentences that formed were just repeats of things she had heard on TV or from me. More often than not, when she talked without repeating something, it was gibberish. She didn’t like to be touched on her head or feet, and couldn’t stand the feel of anything gooey, like liquid soap or applesauce. Other kids played with their food – she wouldn’t touch anything of the semi-solid variety. She started to develop repetitive motions, like pacing back and forth like a caged animal.

It was the beginning of Cordy’s slide away from many of her developmental milestones and towards the autism spectrum. Looking back over many of my blog posts from that time period, I can see the beginnings of problems, but the clues were so small back then it’s easy to see how I missed them. And much of that period I didn’t share on my blog, too, because I didn’t want people to think she was a demon child. (I’ve since realized that it’s common to think of an 18 month old as a demon child. Who knew?)

So having gone through all of that, it’s no surprise that I look at Mira – my social, curious baby – and realize she’s now the same age Cordy was when it all started to change. And realizing that paralyzes me with fear. Will this outgoing personality fall away from me to be replaced with a far-off stare and lack of interest in those around her?

It’s not pleasant to think about, but I have to prepare myself for the possibility. There is a 1 in 5 chance of a sibling being on the spectrum if one child already has ASD. And there is nothing I can do to stop it if it happens. There were things I changed this time, like organic baby foods and a delayed vaccination schedule, but there’s no promise they’ll help.

This has been bothering me for several months now, actually. I’m not letting myself get worked into a panic about it, because that’s silly when there has been nothing yet to suggest signs of autism in Mira. But that nagging worry has persisted in the back of my mind. Is her lack of words a sign? Should I be concerned that her head size is off the charts, too? These next three months I’m on high alert for any changes to her behavior that could indicate a problem.

I’ll be honest: I don’t want another child on the spectrum. I’d rather spare Mira from the additional hurdles she’d face with autism. But I wouldn’t love her any less. If she did end up on the spectrum, I’d do the same thing I did with Cordy, and start the fight to get her all of the services she needs to be successful. Even with the extra work, we’re lucky that Cordy is high-functioning, and over the past year Cordy has made amazing progress (more on that to come) an accomplishment I credit to all of the hard work put in by her teachers, her therapists, and us.

So for now I watch and wait, hoping my second feisty, stubborn and oh-so-smart girl remains the social butterfly of the toddler scene.

Filed Under: Autism, Cordy, daily life, Mira ·


Aug 10, 2008

Why We’ll Never Be Welcomed Back For Dim Sum Ever Again

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Everyone has that one tale about kids acting up in a restaurant, right? Often the tale is of another family, and how you couldn’t focus on eating when some little monster was walking up to your table and reaching for your food, throwing things across the restaurant, or just screeching loud enough to be heard at the Olive Garden across the street. But sometimes the stories are of our own kids, too – times when we wish we never would have gone out to eat that day.

Last fall we were invited out for Dim Sum at a local Chinese restaurant with relatives from Aaron’s family. Aaron and I both worried about how Cordy would react there, especially in light of her recent autism diagnosis. She had been so distant the previous day, and back then she really didn’t handle new experiences well, especially if they involved a lot of new sensory input. (She still doesn’t handle them well, but it’s so much better now.) We feared what might happen, but decided we couldn’t spend our lives trying to avoid the epic meltdown.

The restaurant was packed, with tables close together and no windows in the room. It had a claustrophobic feel for me, so I couldn’t imagine how it felt for Cordy. It was fairly loud, with TV screens on the walls showing Chinese TV, and lots of servers moving from table to table, pushing little dim sum carts. We were shown to an enormous round table, and Aaron and I guided Cordy to the seat against the wall, with us on either side of her to keep her corralled in.

As the food began arriving, we realized that there was nothing that Cordy could recognize. In a familiar setting, we can sometimes convince her to try new foods. In a new setting, though, it’s practically impossible. I pulled out the few snacks we had in the diaper bag, but those were soon exhausted, and Cordy got very upset that she was hungry but couldn’t find any food. Meanwhile, my father-in-law was snapping pictures at the table, and I think the flash from the camera was further provoking Cordy. Normally she could handle each influencing factor, but in a strange location and all at once, it was sending her into sensory overload.

Cordy started out restless, standing next to her seat, then back in her seat, and then letting her head drift backwards so she stared at the ceiling. She whined for milk, pulled on Aaron’s sleeve, and looked more and more out of it. (She wasn’t tired, though.) Actually, Aaron’s dad took a picture of her during this time, right before she snapped:


See how zoned out she was? Her pupils were huge, she had a vacant stare, and her mouth hung open. She was about 10 seconds away from full blown meltdown.

Eventually, she couldn’t take it any longer. She slipped under the table, rolling around underneath for a few minutes, crawled to the other side, and then threw herself into the walkway, screaming. A server was trying to push her cart through the narrow pass, but Cordy proved an unmovable roadblock, writhing and screaming and partially rolling under other people’s tables.

Heads at other tables snapped around to see what the commotion was, and some of our family tried to talk Cordy into coming back to her seat. Aaron and I jumped up, asking family members to please not help (not that we didn’t want their help, but when she’s like this, all the people crowding around her only makes her more upset). Being an old pro at dealing with this behavior, I scooped her up and carried her out to the quiet of the lobby while she fought me and tried to break free, forcing deep, primeval screams out of herself that echoed off the walls.

I’m sure people thought she was possessed as she screamed and wailed and growled for over ten minutes. Her eyes continued to have that vacant stare in them, pupils dilated and glassy, almost like a seizure. I held her tight to prevent her from seriously hurting herself by banging her head onto things or scratching or biting herself. She cried out, “I need to go home! I need a waffle! I need my jacket!” – she didn’t really want any of those things, but during meltdowns she would commonly ask for anything that popped into her head. People were staring as they walked by, and I felt the redness of embarrassment burning my face. But I held on and waited for this fit to pass, while Aaron spoke with family and explained why they shouldn’t get too close at the moment.

Finally it was over. Her eyes looked less distant, the screaming stopped, and she quietly sniffled and wiped away her tears. “Go to the car?” she asked in a feeble voice. “Yes, we can go home now,” I replied, and I carried her out of the restaurant. She quickly fell asleep in the car and slept for over two hours, worn out by the experience. I wanted to do the same.

After that dining experience, I began to wonder if we would ever go out to eat again. During her screaming fit, everyone in the restaurant was looking at us, and I could see that look of Why can’t they control their kid? in the eyes of several people. (Along with the What are they doing to that poor child? look from others.) I felt like the worst mother in the world.

However, we do still eat out, and we haven’t had a major dinner meltdown since that incident. Part of it is due to Cordy’s behavior improving after being in therapy. But we also try to plan the details of dining out now. We make sure Cordy is well-rested, we go at a time when restaurants are less busy, we bring back-up food options for her in case she doesn’t recognize any food, we bring crayons and paper so she can color while we wait for food, and we also spend a lot of time talking to her about where we’re going, what to expect, and what we expect from her. Making sure nothing surprises her goes a long way towards a better experience eating out.

And while I know we’ll probably be “that family” again someday, I hope it’ll never be that severe ever again.

This post was written for Parent Bloggers Network as part of a blog blast sweepstakes sponsored by Burger King Corp. You have until Sunday night to enter your post about being “that family” while eating out.

Filed Under: Autism, Cordy, family time · Tagged:


Jul 16, 2008

Ups and Downs: Currently In The Downs

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It’s amazing how much harder it is to blog in the summertime. When Cordy’s regular special needs preschool ended, I worried how her behavior might change as a result of this change in routine. She needs that routine, so she knows what to expect each minute of the day. Without routine, she’s fidgety, hyperactive, defiant, and sometimes just plain manic. I was so excited when she was recommended for the district’s special needs summer school, knowing that some continuation of routine would be good for her.

The week between the end of class and the beginning of her summer school wasn’t too bad. She was a little off, but overall we found ways to keep her days filled with activity. Then summer school started, and she hated the new routine. Unlike the regular school year, she rode the bus both ways instead of just one way, her school day was longer, and she had new teachers and new classmates.

I had hoped that my Amazon warrior princess would adjust quickly to the new school. And she did adjust a little, but the last day of school was last Thursday, and she still cried getting onto the school bus, just like she did every day before that. She never wanted to go to school, begged to stay home, and occasionally told me she wanted to see her old teacher.

But even worse is that her behavior started to backslide even while in school. She would come home from school and be on the verge of a meltdown if we didn’t cater to her demands. There ae some weird new habits that she’s developed, like constantly putting her fingers in her mouth or licking her hands. And while potty training was starting to reach some success, for the past week and a half it’s been a complete failure.

Now summer school is over, and while she starts a camp next week, I’m ready to cry uncle. This backslide is so difficult. She’s still an adorable girl who charms everyone with her politeness – even while in a screaming fit, she’ll still answer your requests with “No, thank you!” Cordy also can melt your heart as she hugs you and says, “You’re my best friend.” But the manic running back and forth, the constant repetition of scripted phrases, the shrieks and screams when we do something she doesn’t like, and the self-inflicted injuries when we try to correct her are wearing me down.

I know that when it comes to autism, there are periods of growth and periods of regression, however we’ve had such a long up period that this downward tumble is painful to experience. I try to be a good mom, try not to take the screams personally and try not to take out my frustrations about her behavior on her. I know that she has trouble controlling her reactions to sensory stimuli and keeping her emotions in check.

Then Cordy pushes me too far, and I lash out at her, yelling, imposing strict punishments, followed by cooling down and crumpling to the floor, feeling like I’m not cut out for this kind of parenting. I wonder why me? How can someone like me – an average mom, fumbling along for the first time – be expected to pull this child out of the fog she’s often trapped in? Where’s my handbook on how to raise her to be a successful member of society?

The small bit of good news is that we just found out that we’ve been approved for funding through the county’s developmental disability office. This means we’ll be able to seek out more therapy and treatment for Cordy, with the county picking up any costs that insurance won’t. (Which means everything, since our health insurance will not cover any treatment for autism, considering it an “untreatable” condition. Bastards.) And they’ll help cover the costs for me to attend an autism conference in October, where I hope to learn more about how I can best help my daughter.

It’s a good thing that I’m getting on a plane for BlogHer on Thursday. I need an escape – just for a little while – from all of the stress at home. Hopefully I’ll be able to come back refreshed and ready to find new ways to handle any further backsliding Cordy may have.


(PS – Thanks for all of the well-wishes on my exam on Friday. I’m proud to say that not only did I pass, I scored the third best in my entire class. I guess I knew more than I thought I did!)

Filed Under: Autism, Cordy, daily life, school ·


Jun 18, 2008

Schooltime Once Again

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On Monday I needed to call Cordy’s school district to find out more about the summer program. I was told by her teacher at the end of the school year that she was accepted into the program, but no further information was given.

After calling 5 (!) numbers, being re-routed several times and hung up on once, I finally found out they had no information yet as to the summer program, but they were pretty sure it started the next day. Amazed at the lack of organization, I asked them to please call me back when they did find out exactly where we should be and when.

Cordy’s new teacher called late in the afternoon to introduce herself and tell me that due to a scheduling problem with the buses, there would be no morning pick-up today, asking if I could please bring her to school instead. I should mention that her summer school is on the other side of Columbus. Ugh.

So today we packed up her bag, got in the car, and fought rush-hour traffic to get to the other side of town. We got there and tried to tell her how much fun she was going to have at her new school.

New school. New teachers. New classroom. New classmates. See where this is going? Yeah, she didn’t even make it all the way down the hall before hitting the floor. She hid behind my legs as the teachers tried to coax her into the classroom, but she buried her face into my leg and whimpered.

We finally got her into the classroom, and explained all of her quirks to her new teacher, giving her tips on how to best handle Cordy. For those first few minutes, with only one other child in the room, all was well and Cordy examined the toys on the shelves. But then more kids arrived, and she clung to my leg and asked to go home to the quiet house. She couldn’t handle all of the new sensory input – her brain was going into overdrive.

Knowing the meltdown that would follow, I pried her off of me and we left, listening to her screams echo down the hall. I wondered how her first day would go, especially since the summer program classes were two hours longer than her normal school day.

There was no call all day, so we assumed everything was going well. Right on time, the bus arrived, and a smiling preschooler stepped off the bus. She was clearly tired, but happy to tell me all about our front lawn as we walked to the door. A note in her backpack said that she cried for about 15 minutes in the morning, and then had a good day after that. It helps that they spent the day studying one of her favorite subjects: fish. They fed goldfish, went “fishing” in the sandbox, and made cutouts of fish.

I think Cordy will have fun with this summer preschool. We’ll see if she’s willing to get on the bus tomorrow, of course, but once she gets used to her new surroundings, I suspect she’ll charm her new teachers and have the entire class bending to her will.

PS – The school may not have been prepared, but we were prepared today by having all of the items in her backpack labeled, thanks to Mabel’s Labels. Read my review of these amazing sticky labels and enter my contest to win a Camp Pack set of personalized labels for your child!

Filed Under: Autism, Cordy, school ·


May 6, 2008

Walk Now For Autism Update

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Saturday was the Cincinnati Walk Now For Autism event, and after raising $345 in just three weeks, we got up at dawn and made the drive down to the Cincinnati Zoo.

So how was the walk? In a word: wet.

The skies threw water at us the entire drive down. When we got to the zoo, there was a brief respite, and we hoped the rain would be over with, as weathermen had forecasted. (Note: never trust the weatherman.) We were running a little later than I planned, so with the girls in the stroller, we hurried to the registration desk. It’s been a long time since I’ve been to the Cincinnati Zoo. I forgot just how many hills there were. My legs still ache from speed walking up and down those steep hills, and I wasn’t even the one pushing the double stroller. I think I have shin splints now. Ouch.

I was a little disappointed with the event itself. When I went to check-in, I was told that there were no more t-shirts. Period. All sizes were gone, even child sizes. I reminded them that I was pre-registered, but that didn’t matter. Apparently they didn’t think to set aside t-shirts for those who had pre-registered. Poor planning.

I quickly found Amy and Tela in the crowd, and we then waited to find out what was happening next while introducing our children to each other.

Despite the gray weather, there were thousands of people standing around registration, with little organization. At some point, someone started talking with a microphone, but with a crowd of this size, we couldn’t hear a thing. Or see the person talking. The rain then started up again, and we sought shelter under a pop-up tent. The mass of people started moving up the hill, and we guessed that the walk had officially started.

We waited until the majority of people were up the hill, not wanting to walk shoulder-to-shoulder with everyone else. We were also hoping the rain would slow down a little. It didn’t, so we gave up, pulled up all our hoods, and started the walk up the hill.

Mira never smiles, except when she’s soaking wet?

While it wasn’t the event I had planned on going to, it was still fun to meet Amy and Tela. And Cordy and Mira had fun looking at the animals as we walked around the zoo. I wish the organizers had been better, well, organized. No one could plan for the weather, but they could have handled t-shirt distribution and directions better.

Despite the rain, we enjoyed ourselves, and I’m still happy we raised as much as we did for autism research and education. I’ve already signed up for the Columbus walk in October, and hope to raise even more money between now and then.

Thank you to those who donated!

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PS – If you’re a new mom, or know a new mom, be sure to check out my review of The Rookie Mom’s Handbook, written by the two amazing ladies behind the Rookie Moms blog.

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Filed Under: Autism, family time ·