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Apr 14, 2009

She Doesn’t Seem Like She Has Autism

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While some may see Cordy at her worst – in a full-out, thrashing, crying meltdown – most now see her in her friendly, happy state: a hyper, smiling four year old, bounding around as if the world was hers alone. A year and a half of therapies have done an amazing job at calming her sensory sensitivities, helping her with coping skills, and teaching her proper social interaction.

And for those who only see her at her best, I often hear the same refrain: “She doesn’t seem like she has autism.”

I understand that it is often said as a compliment. They are trying to say that in the five or ten minutes they’ve observed her, they haven’t seen any signs of a child with any kind of developmental issues. I agree – Cordy has worked so hard to recognize other kids, even asking them to play sometimes.

But now and then, some people go a little too far in their praise. It generally goes something like this: “How did you find out she has autism? Did you actually get a diagnosis? Are you sure?”

Like I’m making this up or something?

Or this: “Autism is such an over-diagnosed condition. Look at her – she’s fine. What kid doesn’t have tantrums or irrational fears? And some 4 year olds aren’t potty trained yet. Just because she’s not a genius doesn’t mean she has autism.”

Ouch.

The truth is, Cordy doesn’t have a medical diagnosis yet, only an educational “classification”. The difference really doesn’t matter at this age. However, any funding for her therapy ends at 6 years old unless she has a medical diagnosis, and so her case worker has set up an appointment with a group of experts to evaluate Cordy in early May.

Because of what people have said to me, I’ve started to wonder if she will even be given a diagnosis. I mean, I’d love to hear that my child is perfectly typical in every way – forget genius, I’d be thrilled to hear average at this point – even if it meant I looked silly for thinking she had some condition that she doesn’t.

But while people may think Cordy acts “normal” (whatever normal may be), they aren’t around her for more than an hour. They don’t notice that over half of what she says is a phrase she’s heard from TV or other people, and that her responses don’t always match what was said to her. They don’t see our behind-the-scenes work. We do a lot of prep before we leave the house, making sure she knows what to expect ahead of time to prevent any surprises and avoid sensory triggers that could lead to a meltdown. And they don’t see how hard she works in her classroom to retrain her entire thought process.

I asked her teacher if I should expect the evaluation to end without a diagnosis. After all, Cordy is the only kid with developmental issues that I’ve ever had, so maybe I’m seeing something that isn’t there. She is certain Cordy will still be diagnosed on the spectrum. Her case worker agrees.

It does feel ridiculous to actually hope for a diagnosis so that her therapy can continue into her school years. But I want her to have every tool possible for a successful future.

I fully expected to have an oddball child when I became a mom. After all, I was the oddball when I was little – smart and teased mercilessly for it. Gifted I was prepared for. Special-needs I was not prepared for. I was prepared for a battle of wits at every turn. I was not prepared for the patience I’d need to talk with a child who can’t read facial expressions, emotions or social cues.

Earlier today I found an excellent post, Ten Things Every Child With Autism Wishes You Knew, and as I read it, my eyes filled with tears. It reminded me to be patient and not expect perfection from Cordy, because no child fits all of the expectations of parents. Just because she’s different doesn’t mean she can’t shine using the strengths she possesses. And the post is an excellent resource for those who may be a little uncertain or even afraid about finding out their child has autism.

When I am once again told “She doesn’t act like she has autism” (because it will be said again), I’ll be able to smile and reply that autism is only one part of who she is, and her strengths outshine her limitations.

Filed Under: Autism, Cordy ·


Mar 31, 2009

Beetle-Mania

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You’d think we time-warped back to the 1960s in my house.

Cordy’s newest obsession is the Beatles. This happens every few months. She’ll find something new to fixate on, and it will become her go-to conversation starter, or excuse, or comfort phrase when she’s over-stimulated.

And while an obsession with John, Paul, Ringo and George wouldn’t be so bad, the truth is they aren’t the Beatles that have infested her imagination.

It’s these:

This obsession was triggered over one friggin’ commercial. She happened to see a commercial for The Wonder Pets Save the Beetles while watching Noggin, and suddenly her world revolved around four bugs with bowl cuts.

Do you think the beetles will come to my house?

Will I see the beetles soon?

Mommy, the beetles are trapped!

Are the beetles stuck in a cave?

Don’t forget lunch for the beetles, too!

After days of this, I searched to find when the damn show would be on and Tivo’d it, thinking that she would watch it and then lose interest.

Nope.

They’ve now gone beyond the show to their own world. She has names for them, she draws them, she creates wild stories about them. They appear in her dreams, they keep her safe, they apparently like PB&J sandwiches and they get trapped in caves a lot. I hear something about the beetles at least once every half hour.

But some variation of When will I see the beetles? is now her verbal filler. She uses it whenever she has nothing else to say, or doesn’t know how to respond in a conversation. And Aaron and I have reached our point of frustration most days. You can only take so many questions about the beetles until you want to throw yourself into a pit of flesh-eating beetles just to end the auditory assault. I’m not kidding – it’s worse than the preschooler Why? question.

So until this obsession ends, we tell her she’ll see the beetles in her dreams and we let her watch Wonder Pets Save the Beetles every other day. I’m hoping her love for the beetles will fade like boy-bands from the 90s and I’ll gladly delete the show from Tivo.

Although the past two days, I think I’m seeing a hint of the next obsession coming soon:

Mommy, how does the TV work?

I think I’m going to call up Time Warner and let them explain that one. For what I pay for cable, their customer support from India can satisfy my four year old’s curiosity over and over again.

Filed Under: Autism, Cordy, daily life, kid logic · Tagged:


Mar 17, 2009

The Journey To Sisterhood

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Yesterday I read a post by Liz at Mom101 that made me think back to the early days of when Mira was a newborn and Cordy was a wild, intense, temperamental 2.75 year old. Those first weeks were a complete blur of emotion and sleeplessness for me as I tried to adjust to meeting the needs of a new little person and her big sister, who was needy in different ways.

The thing that broke my heart when Mira was little was Cordy’s complete lack of acknowledgment of her new sister. It was like Mira didn’t exist to her. Of course, this was also pre-evaluation when Cordy didn’t notice other kids most of the time either. I would sit on the couch, holding Mira and asking Cordy to come say hi to her new sister, only to have Cordy come say hi to me, not understanding this little wrapped up bundle in my arms was another human being.

Completely unaware of the other human being right next to her

It took months for Cordy to notice Mira, and all progress was tied directly to her progress in therapy in her preschool. As she ventured out of her internal world, the external world came into focus, and with that world her little sister, who desperately wanted the attention of this big kid in her space.

I remember when Cordy would run laps in the living room while Mira was in her exersaucer – as Cordy would come closer, Mira’s face would brighten with a smile and her arms would wave wildly to get Cordy’s attention. As Cordy ran past, Mira’s smile would fade to a slightly confused, slightly down expression, realizing she hadn’t been noticed. Repeat x 100.

I would cry at night, thinking this distance between my two girls would be permanent and Cordy’s emotional distance would prevent them from ever being close.

If we don’t make eye contact, she doesn’t exist.

Ever so slowly, though, Cordy recognized Mira. She would hear Mira cry and say, “Mira’s hungry!” Or hold Mira’s hands and move her arms back and forth like she was a toy. I then caught her hugging Mira once. Then instead of eating Mira’s snacks, she would feed one to Mira. For her part, Mira never gave up on Cordy, always initiating contact with the older girl who seemed unreachable at times.

But now. I can only say we’ve come a long, long way. Cordy still doesn’t always understand that Mira has feelings too, but she recognizes Mira as her little sister and as a fellow person. I’ll credit part of that to Cordy’s therapy, part of it to typical kid behaviors and maturation, and part of it to Mira’s insistence that Cordy WILL pay attention to her, dammit, even if she has to sit on her. They occasionally play together, and even if it is (usually) too rough, they both giggle until someone inevitably cries, and then they go back to wrestling and giggling again.

They are now sisters.

Filed Under: Autism, Cordy, growing up, love, Mira, sisterhood ·


Feb 1, 2009

I Will Never Survive Elementary School (Alternate Title: Kids Are Cruel)

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With the layer of snow still covering the ground, and two little girls with pent-up energy from being cooped up for days, we ventured out to the mall playground yesterday. (OK, so it was also so I could do a little shopping, but that’s beside the point.)

Aaron watched the girls play for about 45 minutes, and then I took over for the last bit. Not long after I sat down, Cordy came up to me and sat on my lap. “Can we go home now?”

Surprised by this request, I said, “Yes, we can go home as soon as daddy comes back.”

At this point a little girl walked up to us and said to Cordy, “Come on! Your red car is back! Come play!” At first I wondered what red car? She doesn’t have a red car with her…

Then Cordy’s face brightened. “OK!” she exclaimed, taking the little girl’s hand as she led Cordy to the other side of the play area. It was such a sweet scene to witness – this little girl was asking Cordy to come play! My heart grew three sizes in that moment as I imagined Cordy someday having lots of friends and charming other kids.

I watched them go up to an older boy in a brown shirt (he looked about 7), and he then produced a shiny red toy car from behind his back. He took off running, holding the car up high. The group of 4 or 5 kids around him ran after him, including Cordy. The other kids looked around 5 or 6, so I wasn’t concerned that an older kid was with the group.

The thought crossed my mind that this older boy might be teasing the other kids a bit, but I quickly let that thought fall away when Mira climbed onto my lap for some attention. Cordy was having fun with friends, so I was happy.

A minute or so later, I checked to see where Cordy was in the play area. At first I didn’t see her, but I saw the group of kids she was with. They all seemed to be leaning in towards something up against a play structure, crowded together and laughing. I saw the older boy lower his hand, with the red car in it, towards the kid I couldn’t see, saying “Here, you want this?” and then yank it back quickly, shouting “NO!” at the kid and laughing. The other kids roared in laughter in response.

I started to get a sinking feeling, which was then confirmed when I heard Cordy’s high-pitched shriek. I shifted my position and across the play area saw Cordy, sitting on the floor and cornered by this group of kids, reaching up and pleading to play with the car as the boy again thrust it in her face, only to pull it away as she touched it, shouting “NO! It’s MINE, dummy!” in her face and laughing at her as she shrieked again, half-covering her face and looking confused. The other kids were egging him on, saying, “Do it again!” and shouting at Cordy, “It’s not your car!”

At that moment my heart shattered into a million pieces.

A moment later, sensing my heart was no longer in any state to put up a fight, my rage began rising from my gut on a conquering march to my brain.

I stormed over there, with what little logic I still had in my head repeating a mantra of Don’t kill the kids…don’t kill the kids… Not trusting myself to say anything to these little monsters, I simply walked past them and scooped Cordy into my arms, saying, “C’mon, let’s go play over there. You don’t need to play with kids who are mean to you.”

The older kid, realizing the jig was up, and thinking himself smooth and savvy with adults, tried to act like nothing was wrong. “She kept asking for her car, but it’s mine. She thought it was hers.”

Again, I didn’t know what to say in that moment. I didn’t want to tell the kids she has autism – they probably have no clue what that means, and I didn’t need to further alienate her from them. In a pinch, I came up with, “Well, she doesn’t always understand that a toy isn’t hers. She’s not as old as you might think she is.”

“Well how old is she?” the little girl who brought her back to the bullying asked me. “Is she six?”

Apparently my Amazon child had fooled people once again. “No, she’s four.”

The little girl seemed unimpressed. “Well, my little sister is four. And she knows that some toys aren’t hers.”

OK, engaging these kids has clearly failed. Time to just make an exit, I thought. But then the older boy – that same chubby little ringleader who thought he was so much older and wiser than other kids, yet was teasing my daughter mercilessly – had to add one more statement to prove that he understood child psychology.

“Oh, I understand!” he cooed at me. “Little kids and babies don’t get that there are toys that don’t belong to them. You know…like dogs! She’s just like a dog – doesn’t know what is hers and what isn’t.”

At that point my rage was screaming in my head One swing! Just let me have one swing at him!! Meanwhile, I had ceased to breathe or move as I stood there and stared at him wide-eyed, as if he had two heads, one of which was a barking dog. Even my logic had given in, pointing out, Someday that kid is going to get his chubby little head knocked into a wall, and he will completely deserve it.

Finally wrestling my voluntary muscles back to my own control, I turned away from the mean kids and carried Cordy back to the other side of the play area. She buried her head in my neck, asking to go home. Aaron wasn’t back yet, so I checked to make sure Mira was still OK and sat Cordy down next to me.

“I want my red car,” she whined.

“Cordy, that car wasn’t yours.” I reminded her.

“It wasn’t? I want to go play with my friends.”

Damn, she didn’t even realize they were teasing her. “Cordy, those kids weren’t your friends. They were being mean to you.”

Cordy looked confused. “They were?”

“Yes, sweetie. They were teasing you and laughing at you. They weren’t being nice.”

“Oh.”

We’re not even to kindergarten yet and I’m already stressed out about bullies. I want Cordy to have friends and be happy, but as it stands her social skills aren’t very strong and kids, who pick up on any weakness, are quick to exploit hers. The only comfort at the moment is that she has no awareness that people are being mean to her – she is spared the hurt and the pain of being rejected by others. (While I currently bear the brunt of it.)

I know I can’t protect her forever, but the social world of children is a harsh and cruel one, often shaping a person for a lifetime. I should know – I was a misfit child who endured being the outcast, and the scars still burn. It’s probably because of my past that I worry so much about my daughter who isn’t always on the same plane of reality as the rest of us. Winning popularity contests isn’t my goal for her, but I do want her to have friends and know how to handle situations where other kids try to hurt her.

At this point in parenting, I feel lost. We’re entering a phase of her life that I didn’t do particularly well with, and she has additional challenges to make it even more difficult. I can’t be there to pull her out of these situations all the time, and I can’t even think of how scenes like this would end without me stepping in.

(And before anyone asks: No, I don’t know where their parents were. A group of parents sitting right by the gang looked on without any concern. The mall play areas lean towards a Lord of the Flies atmosphere on weekends when older kids aren’t in school. The majority of concerned parents have very young children, and hover over them continuously.)

Filed Under: Autism, being a mom, big issues, Cordy, kid logic, other people's kids, rant · Tagged:


Jan 21, 2009

Dark Nights

By ·

These are the nights I hate.

The cries sometimes erupt sharply from her room. Other times they are soft at first, growing to a fever pitch. Heaving sobs come between high-pitched whines. I wonder at first if she’s scared or in pain or both as I rush up to her room.

Tonight it’s sharp cries. I find Cordy on the floor beside her bed, curled in the fetal position with her arm over her head, trying to block out some unseen attack. I ask her what’s wrong, but as usual I get answers that are vague or make no sense.

I ask why she’s upset and she says she doesn’t know. I ask if her belly hurts, and she says it does. I ask if her foot hurts and she says it does. I doubt she really hurts – instead she is letting my questions lead her to find the answer she doesn’t know. Anything I ask she answers yes.

Her eyes are open wide, pupils large and black. She is awake yet most of the time sees right through me. She begins to cry out that she misses her grandma, and I remind her that she’ll see grandma in a few days. She then says she misses mommy, and I look closer into her eyes and tell her I’m right there. I shift my weight slightly and she interprets this as a sign of retreat, begging me to stay because she is scared.

“What are you scared of?” I ask.

“I don’t know…the dark.”

“But your light is on. It’s not dark in here.”

“I’m scared of the dark when I close my eyes.”

As a toddler Cordy suffered from night terrors. She would wake suddenly, screaming and thrashing as if she was being assaulted. We tried to comfort her, but any attempt to interact made her scream even louder. She didn’t recognize us or her surroundings. 15-20 minutes later, she would eventually start to calm and slowly become aware of our presence, dazed and clinging to us for comfort.

We had a long period where there were no nightmares or night terrors. Cordy has never slept through the night since she turned three, but she rarely needs us when she wakes. She usually goes to bed around 7pm (her choice), then wakes sometime between 11pm-1am, spending up to an hour quoting some TV scene to herself over and over, running back and forth in her room, or collecting carpet fuzz in one of her play kitchen pots. She eventually settles down without any intervention from us. Sometimes she has another awake period around 3am, and by 6am she is up for the day.

But over the past few weeks, the night-time crying has come back. She may be four years old, but her comprehension of nightmares is closer to that of a two year old. She can’t comprehend it – she only knows that she’s suddenly awake and scared of something she can’t describe. It’s not a night terror, because she’s awake and aware of us, but she can’t accept our explanations. No matter how we try to explain that it wasn’t real, she doesn’t believe us. Her inner world and the outside world are blurred together in that moment.

It’s very possible that these nightmares are her way of trying to process the outside world that encroaches on her internal world more each day. Her inner world is a predictable place, filled with routine and repetition and patterns. She retreats to it whenever she feels threatened. Our world is chaotic to her, frightening and confusing and filled with new experiences and sensations. When she’s had too much, she retreats inward to her scripts and her repetitive motions.

Cordy has made incredible progress combating autism. She’s brave, she’s strong-willed, and she wants to please us so much. I feel so proud of her accomplishments, and I take some pride in how well we’ve fought to get her to this point. She has her good days and bad days, of course. She talks back to us now, full of attitude that she learned from her classmates, and while it’s frustrating we laugh and remind each other it’s a sign of progress. She’s acting like a “typical” four year old with each huff and foot stomp.

But on these nights, when I cradle my scared, no-longer-small four year old with the wide, vacant eyes and grasp for ways to make her fears go away, unable to promise that the darkness won’t be there when she closes her eyes, I feel just as lost as she does. And I can only hope that the morning sun will vanquish the darkness and bring her some peace, even if only for another day.

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Filed Under: Autism, being a mom, Cordy ·