Tuesday, December 30, 2008

When Mommy takes a shower...

... the toddler has power. I should have known something was up when he got super quiet but I thought he was watching his new Nemo movie. Unfortunately the call of unwrapped presents under the Christmas tree was too much for Caden to resist. Tissue paper stuck in the door is never a good sign:

Guilty! Trying to hide behind your table won't help!

Monday, December 22, 2008

For the love of Santa

Caden has really fallen in love with Santa this year. He has no idea that you're supposed to tell Santa what you want for Christmas and then he leaves tons of presents for you under the Christmas tree. He loves Santa because he's a nice cuddly warm guy in an easily recognizable fuzzy red suit. Like Elmo.

Our local fire department drove Santa through town on top of one of their fire trucks. Seemed like a great idea except that they kept blaring the horns and sirens of the trucks and turned Santa's arrival into a somewhat terrifying moment for younger children. You'll see Caden clinging to his mother with all his might in this video and then hear him excitedly chanting "DADADADADADA" as in San-DA when he realizes who's on top of the last truck.

After we retreated indoors, Caden kept bringing his coat to us as if he wanted a do-over. He was knocking on the front door and even brought my coat to me. He wanted to go back out and find Santa Claus despite the accompanying fright fest of noise.

Caden's gymnastics class held a holiday party. It was basically an open gym session for the kids to run around and play. At one point they were asked to sit together for some caroling. Suddenly Santa appeared. Caden jumped up and did a little jig, spun in circles, cupped his face, shouted "DADADADADA". He could not contain his pure joy and it made everyone around us smile and laugh. Every time he sees Saint Nick is as exciting as the first time.

Now we have to work on when he sits on Santa's lap, Caden should do more than melt. He looks like he's settling in for a nap and completely collapses on the man. It is difficult to take pictures when your son's neck looks broken as it rests on that soft red suit. Santa usually asks Caden several times what he wants for Christmas and it always ends the same: he wants a hug. I think Caden understands the spirit of the season just fine.

Friday, December 19, 2008

Geraldo update

As a followup to my previous post about Geraldo's upcoming investigation into the dire Waiting List situation for individuals with disabilities, I have an update on when the segment is to be aired. There is now a change of date. It has been moved up to Saturday, December 27 on 10 pm on the Geraldo at Large FOX News show. This is great timing to catch people in the "holiday spirit" which may open their eyes and hearts to this big segment of the American population living in desperate circumstances. There is also hope that local Fox affiliates may jump on the bandwagon and do their own local reporting on the Waiting List. Tune in next Saturday!

Wednesday, December 17, 2008

Caden thumbs his nose at silly

I saw it coming. SMACK! And down went Caden like a fallen tree. Let the tears begin.

We had been invited to a friend's house for dinner. They were hosting some out-of-state guests with children and thought Caden would like to play with the kids. Which he did. He followed them around from room to room with me right in tow. My friend told me to relax as the kids would be fine and there was nothing they could break in the house. I gave Caden some space and tried to unwind enough to socialize with the adults. One of the guests was an overly-animated New Yorker who talked with all of her body, hands moving continuously. As a child that relies on a lot of sign language, Caden was confused by her movements. She had a sudden booming laugh that scared him and brightly-striped pants that made your eyes water if you stared at them for too long. For all her vivaciousness, Caden seemed to be happy to be in another room away from her.

I saw the kids tear out of a bedroom chasing each other down the hall, Caden bringing up the rear. When I heard the playful screaming I realized that they had reached the end of the hall and were turning around to chase each other back. Caden was still plowing full steam ahead just as the other kids turned and SMACK! One of the older girls leveled my boy flat onto his back. He was scared more than anything but wailing his lungs out for good measure nonetheless. I scooped him up and tried to calm him down when the mother of the girl approached to see that Caden was okay. It was the stripey-pants lady, hands gesturing wildly as she dramatically apologizes. As sweet as she is, I expect that she may end up making things worse.

Caden looks up with his puffy red face soaked with still-streaming tears and takes a solid head-to-toe look at her. I wonder if he might start screaming anew when he raises his thumb to his nose. He begins to then wiggle his hand, pinky outstretched. Stripey-pants lady realizes he is making a sign.

"What did he sign?" she asks me.

"He said..." I consider lying, not sure how this stranger will react with everyone gathered around us listening. Maybe I could say he signed thank you, or pretty. I opt to translate honestly instead. "He said you're silly" I reply while choking down a giggle.

"He said I'm silly?" She seems surprised by his opinion of her and straightens up. He has stopped her in her tracks. Then she surprises me by kneeling down to his eye-level and gently smiling. In a near whisper she says "Yes I am silly!" Through his tears, Caden smiles and I know the drama is over. She hugs him and seems to rejoice in her new label while Caden returns to playing with the other kids. All is right with the world again.

Monday, December 15, 2008

Thursday, December 11, 2008

One of my more embarrassing moments

Two days ago I gave a presentation at our local hospital. Doesn't sound so embarrassing. First some background so you can appreciate the mortification I am about to share.

I have been helping this hospital for the last couple of years with their Family-Centered Care Training. The organizers of the training feel that they can speak to their coworkers all day about what family-centered care means and how it should be done but the biggest impact comes from having actual patients come in and speak from personal experience. At first the training was part of the new employee orientation but this year they wanted ALL employees included. They offer the program one or two times a month but of course everyone waited until the last date of the year to attend one of these required presentations. They were expecting around 200 people. In previous trainings, they've had about 40 attendees. Three cheers for procrastination.

I frequently am asked to give the patient portion of the presentation because I can speak for myself during my prenatal experiences as well as for Caden as a pediatric patient. More bang for the buck, I suppose. However it was becoming more difficult for me to attend due to Caden's busy schedule. They've also had other presenters not show up due to weather or illness so last year they videotaped one of my presentations to have as a back-up. They've shown it close to 20 times since but thought that because this upcoming group was to be so large, it would be nice to have me in person.

The group is in fact so large that we are moved from the usual lecture room in the medical college to an auditorium at a conference center. The organizers agree to meet me at the door since I don't know my way around this building. As I approach, one of them says "And there you are in your outfit. That's the exact same outfit you wore in the video presentation we've been showing. Right down to the necklace!" Uuuuhhhhhh.... what do you say to that? Is that whooshing the sound of air being sucked from my body? I consider wearing my winter coat during my entire talk.

It's true that the only clothes I've purchased since having Caden have been from Sam's Club while picking up diapers and wipes or the consignment shop when dropping off some clothes he's outgrown. In fact, Caden has a more fashionable wardrobe than his mother. Being a stay-at-home mom, I pretty much live in sweats and jeans. I have 2 nice "adult" outfits for these presentations that aren't 100% outdated. Though the boots that I wore with this particular ensemble I've had since high school. I've had them so long that they're back in style. Yikes! I think it's time to face the ugly truth that I need to do a complete wardrobe overhaul. Or else they'll really start to wonder about me if I show up in this outfit yet again.

Monday, December 8, 2008

Yeah, it's like that

"What is Down syndrome, really? Is it like a learning disability?"

Talk about your loaded question. This is the one placed before me at a local holiday train display. The volunteer running the model trains was a 71-year-old man with a great-grandson also named Caden. He approached me about my Caden, asking how old he was and commenting on his size. I respond that Caden is big for a typical boy his age, much less one with Down syndrome. Children with DS are usually smaller than their peers and even have their own growth chart to reflect that. But at this rate, Caden will grow to be taller than me or The Tank. Because I've mentioned DS, I know I have opened the door for related questions from this stranger. Sometimes I feel like a person wants to ask about it but doesn't know how so this is my way to say it's okay. Indeed the volunteer does accept my unspoken offer but comes at me with a question I've never been asked before: is Down syndrome like a learning disability?

"Well, it's caused by an extra chromosome..." I start but he is nodding his head in a way that says "yada yada yada, I know all that".

"It's a random occurrence..." I continue as his head continues to nod.

"Being a syndrome, there is a wide range in the way it is expressed in an individual..." Still the head-nod. In his mind, he is probably fast-forwarding me.

"But in nearly all cases there are the characteristic facial features and some degree of mental retardation." Finally he smiles as I approach some meatiness.

"Anymore with the amount of therapies and stimulation, Early Intervention, better schooling and medical care, the MR is generally mild to moderate. Caden is very bright. He knows all his letters, colors, and shapes. I stopped counting his signing vocabulary when he hit 200 words. He can read over 40 words and is starting to learn numbers. He will learn to read and write and do math. He CAN learn, he just learns at a slower pace or sometimes in a different way." As I hear my own answer, I realize I have talked his question to death. I could have answered it much simply so I backtrack.

"Yes," I finally declare, "I guess it is like a learning disability."

The more I've thought about that conversation, the more I like that way of thinking. Mental retardation sounds scary, clinical and something with which most people may not have experience. But a learning disability...well, heck even Tom Cruise has a learning disability. That makes it more approachable and familiar, different but okay. It doesn't sound like such a big deal to say that his extra chromosome has given Caden beautiful almond eyes and a learning disability. Over simplistic, yes, but still I like this great-grandfather's perception.

Thursday, December 4, 2008

Why is Play-Doh yummier than cookies?

Caught in the act of eating Play-Doh

Realizing he's been caught redhanded

What gave it away? Would it be the purple slime quickly turning to concrete on my face?

Monday, December 1, 2008

Caden releases his inner rebel

We have entered the phase of "question all authority". I used to be able to tell Caden "No, don't do that" and he would stop whatever he was doing. Simple. Now he looks for alternative methods to accomplish his mischief. For instance, last week we visited our local pharmacy. They had an enormous Christmas tree fully decked out in their lobby area. Caden's hand went straight for the closest ornament. "No, Caden, no touching" I warned and watched my angel's hand go down as he respectfully obeyed his mother. I put my arm around him to enjoy this peaceful quiet moment taking in all the lights and decorations when suddenly Caden's foot shot out and kicked the tree. Who does that? Who kicks a Christmas tree? I did NOT just see that! And to top it off, the little stinker laughed because he knew I had only said not to touch the tree. I never said anything about kicking the tree.

We recently rearranged our living room so that our cockatiel is further from the cold of the front door. She's now in a corner that is too accessible to Caden. He never paid much attention to the bird before but in her new location, she has become fascinating. He runs toys up and down the bars of the cage, tries to push toys into it, hits it, throws balls at it and of course, kicks the cage. My guidelines about the bird grow each day: no hitting, no kicking, no throwing, no toys, no food, no pushing your stool over for a closer look, no dragging the table it rests on.... My poor bird has suffered through my college days, 2 cats and moves across 4 states but I don't know if she'll survive a toddler. Yesterday Caden invented a new form of civil disobedience with the bird: screaming. He stands within an inch of the bars and screams at our poor freaked out feathered pet at the top of his lungs. I have been defeated by a three year old. Again.

I'm proud of his inventiveness. I'm proud of his independent streak. I'm proud of his persistence. And I am utterly exhausted trying to stay one step ahead of this smart little boy.