RSS Feed

Monthly Archives: November 2011

Conversation

Conversation has been a challenge for Bailey as long as I can remember. The kind of back-and-forth, really-getting-to-know-one-another conversation that mothers look forward to having with their daughters seems unreachable to me. Any question I ask about her day is met with answers to what Tulip, her pretend friend, did that day. It sort of goes like this…

Me: “Hey sweetie! How was your day? Did you get to play any instruments in music class today?”

Bailey’s very animated response: “Guess what!?”

Me, hopeful: “What?!”

Bailey, still animated: “You will never believe what happened to Tulip today.”

My heart sinks, but I still manage a pretty enthusiastic “what?”

Bailey: “She was in the cafeteria eating her lunch when someone accidentally spilled milk all over her head. She was so upset she cried.”

Everyday I hear these long elaborate tales of what Tulip did, but nothing that tells me what and how my daughter did the 6 1/2 hours she was away from me. Although I sometimes wonder if these fantasy tales offer a hint as to how she experienced the day. I can’t imagine though… some of the stuff Tulip gets herself into are just so out there. Not too long ago she suffered a broken face.

So when a moment strikes I search my brain for some topic, any topic, to engage her with. Even if it starts off promising it usually ends up with me losing her not too far into it. The other day she took me off guard by asking me how my day was, but then interrupted me as she began repeating the phrase in monotone “Step back. Doors are closing. When boarding move to the center of the car. Step back. Doors are closing. When boarding move to the center of the car.” A phrase she likes to recite often after hearing it on the Metro.

If Bailey isn’t talking about Tulip’s mischief, she’s talking about Toontown, her favorite website. She talks about it at breakfast, while I’m helping her get ready for school, she interrupts her bedtime story to tell me about it… During our weekly movie night she will turn to me 10 minutes into the movie and tell me that Lollipop (one of her toons) ordered glasses from the Cattlelog and she wonders if they’ve arrived yet. Laying next to her as she was drifting off to sleep one night I heard her whispering to herself… “got to get on the Toontown trolley…toontown training video… 11, 12, 13, 14, 15, 16…. six more to go. Gag, gag, gag, gag, gag, gag, gag. Lollipop, lollipop.” It exhausted me just listening to it, thinking about all that swirling around in her head.

But oh last night! Last night we had such an awesome talk that I’m still walking on air. It started with her asking me how I knew her daddy was “the one”. This is an unprecedented question for her to even think about asking. She never voluntarily bothers with anything that doesn’t have to do with her world. I took a deep breath and dragged out that conversation as long as I possibly could, which was probably a good 10 minutes. She was genuinely interested and engaged in what I was saying and she actually asked questions and waited for responses. And then asked MORE questions. I enjoyed every second of it, making sure I was silly enough to keep her attention but also making sure I explained how important it is to let God lead us. It was such an awesome few minutes, and then…

Bailey: “Nevermind! I have an idea!”

Me: “What’s your idea?”

Bailey: “Nevermind! I have an idea! Nevermind! I have an idea!”

It hits me that she is reciting Spongebob. But I don’t care because it was absolutely, fantastically wonderful while it lasted. I can’t wait for the next time we talk.

Advertisements

Halloween

Well, after 7 loooong days of Bailey having a “stomach” flu (and I will spare you all the fun details, but it was BAD. I mean, anytime she is sick it’s bad because the slightest hint of the wheels in her stomach moving in reverse causes her to scream out in panic, convinced that she is dying…but this was fever up to 105, going to the ER, not eating and barely drinking anything for four days with major lethargy and me almost convinced IV fluids would be the only thing to pull her out of this bad) she is now well enough and at school. I am SO fortunate that I didn’t catch it.

Although I had several fun Halloween activities planned for her she was only well enough last night to hit up a few houses. So I held my breath and crossed my fingers and pulled what I knew would possibly be a costume reject up her legs and up her arms and securely fastened the velcro in the back. And I say “reject” not because of it’s seriously high level of cuteness…she LOVES cute…it’s because of the comfort. I detailed her lack of tolerance in a previous post, Seasons (click to read), and Halloween costumes are always tricky. But after a pep talk and some tugging here and there she decided to cooperate. Either that or she was just too weak to put up much of a fight. I’m thinking it’s the latter.

So off we went to beg for candy…Bailey, Cookie (our chihuahua), Easton** (my husband) and me. We decided to keep it short and sweet. Now you would think since this is technically her 8th Halloween she is an old pro at ringing a doorbell, yelling “trick-or-treat” and shoving her bag in a person’s face demanding free candy. But one of Bailey’s challenges is instructions and organizing steps in her head, and if it’s not a ritual that belongs to her she needs constant and clear prompting. Since Halloween is a once a year thing I reminded her of the script before we started. And this is how it went as we approached every. single. house.

Bailey searches for doorbell. Bailey finds doorbell. Bailey pushes doorbell repeatedly as I plead with her to stop and explain how rude that is.

“But I like to hear the different door bells”. Luckily it didn’t seem to bother anyone, with only one exception.

After the homeowner opens the door and says ‘Happy Halloween’ Bailey stands there and stares with an expression of ‘why are you here?’. I remind her of her line…

Bailey: ‘Trick-or-treat.’

Homeowner drops candy in Bailey’s bag.

Me: ‘What do you say?’

Bailey: ‘Trick-or-treat!’

Ugh.

Now when the typical kid collects her candy she will take off for the next house, determined to get as much loot as possible. After Bailey collects her candy she must stop and study each decoration. She has to touch them and talk to them. And since Cookie accidentally knocked over a small pumpkin in the walkway, Bailey has to imitate her and get down on all fours, put her nose on the pumpkin and knock it over again after I put it back in its place.

This year she seemed to have a much more difficult time remembering the steps of trick-or-treating. At first I thought maybe she was just out of it from being so sick. But when she made a comment about it being too quiet I remembered last Halloween and how excited she was at the simple fact that two of her friends and their parents walked with us. It was a smaller town and the neighborhood was flooded with kids, spooky sounds and music playing over loudspeakers, and decorations on every house. Each house we went to she was with her friends and there were usually several other kids hitting it at the same time… so she was in a group doing what the group did… following their lead. So, in a sense, they were there prompting her instead of me prompting her.

‘Lack of ability to follow social cues’ is a term you hear often if your child has an Asperger’s/Autism diagnosis. So now I’m a little confused. Although, if you think about it, what kid wouldn’t follow the social cue when it involves your peers getting handfuls of free candy.

I think in Bailey’s case it is more of her “imitating” than following cues. Just like her imitating Cookie knocking over a decoration, she would imitate the other kids trick-or-treating previous years. This year there just weren’t any with us to imitate so I had to TELL her what to do. And even then she couldn’t get it quite right.

When her cousins were in town she mostly refused verbal requests/demands when it came to her behavior, but she imitated their behavior like a champ.

*lightbulb*

The verbal imitation… reciting movies, shows. Even parroting sounds she hears in the environment.

Now I’m going over in my head how I can use this fresh ray of light. It just amazes me how if I stop long enough to pay attention I will learn new ways to help her, even if they seem small. For so long after her diagnosis I was just stuck in this rut of what does this mean for her future? What does this mean for her school life? How do I get the services and training for her that she needs to operate in this world successfully? All of these things are important, don’t get me wrong. But it’s so important to be still long enough so you catch the little things that can help your child. Especially when you’re like me, on a very long wait list to see a behavioral specialist that is covered by your insurance. That’s when the seemingly insignificant things can make a huge difference.

So I will now proudly add this little nugget to my growing list of trial and error “Do-It-Yourself” therapies. I WILL find a way to help her turn this challenge into a strength…

…while I help myself to her Halloween candy.

*Orange text indicates link. Click with confidence **not his real name