Monday, January 27, 2014

Snow

There is a special magic when we figure out a way to make common things happen that we weren't sure we would ever get to do. It is all the normal wonder of a special first, but backlit by the glow of redemption.

Saturday, Collin went sledding for the first time. We used a gigantic sledding tube that he fit in perfectly. I was nervous at first, but he made it clear that, as usual, faster and crazier is much better.

This weekend was the first time this winter that I found myself wishing it wouldn't warm up so fast.

First Sledding Adventure from Annie Kratzsch on Vimeo.







Wednesday, January 22, 2014

How to Help Kids Interact With Collin

Two of the posts I've gotten the most feedback on are this one about how to interact with Collin and this one on how to interact with us.

And one of the posts I've gotten the most requests for is the one I'm writing.

The problem was that I didn't have any advice to offer because I hadn't had sufficient experiences to draw from. Collin isn't in many situations with typically-developing kids yet. His most frequent hang-outs are with his cousins, who have always known him, have no questions about him yet, and adore and include him. While that's a beautiful thing to witness, it doesn't help with teaching children who are unfamiliar with kids with special needs. (Unless the cousins are present, that is. In that case, they teach far more poignantly than anything I can write here just by their example.)

Over the past months, though, a string of surprising and wonderful experiences have given me a chance to observe and think through what it looks like for kids to interact well with Collin. It's not always what I expect and the range is wide - everything from looking intently at him to asking a thousand questions to learning what makes him laugh and doing it ad nauseum - but there are definitely common threads.

Here are the two main takeaways:

1. Kids follow their parents' lead.
Whether you smile nervously from a distance or say, "Hey, there's Collin! Let's go say hi," your kid will pick up on it.

2. Kyle or I will inevitably be there to help.
You don't have to go this alone and you certainly don't have to have all of the answers. We don't have them all either, but we'll work together to make this the best experience possible for everyone involved.

And on the more practical side of things, here is a random list of suggestions I have formulated by observing people who taught me what to shoot for by doing it really well:

1. Don't shush.
It is well intended. You don't want your child to say or do something offensive. But there are few things more confusing for your child or more isolating for mine than to discourage looking/talking/asking about Collin. It confirms that something is different without the accompanying truth that different is fine and even good. Usually, this response is seated in the adult's unease with the situation. We don't like to be asked questions we don't know the answers to, especially in front of the person the questions pertain to. Let me encourage you, though, to take a deep breath - just like I have to - and step into this, trusting that it's worth any discomfort.

2. Let the questions flow.
This is the next stage of the last one. Once the questions start coming, it will usually be a while before they are satisfied. Let them come and answer them the best you can. Sometimes they will make your guts clench. Sometimes the answer will be "I don't know." Sometimes the answer will be, "Let's ask his mommy." But when it comes to young kids, it's important to show that there are no questions they can't ask.

3. Look for common ground.
It's not as hard as you might think. Collin loves swimming and riding his bike and watching movies. He likes books and music and drawing pictures. He might do it differently or need more help, but I find that that's not nearly as big of a deal to kids as the fact that he likes it or does it at all.

4. Encourage sharing.
Collin can't talk yet, but he loves to listen and he especially loves to listen to kids. Encourage your child to tell Collin about his trip to the zoo this week or about what she did at school today. He wants to hear about favorite cartoons and favorite toys and favorite places to go. This also naturally takes care of #3 many times, because it gives us the chance to say, "Really?! Collin loves that cartoon too!" and "You like to swing?! Collin loves to swing so much that he has a swing in his room!" and so on. It also gives us the opportunity to be interpreters/teachers. As they're talking, we can say, "Look, Collin is showing that he likes listening to you," and point out how. Or, "Look! That's how Collin tells you that he's excited! What do you do when you're excited?"

5. Be patient.
Your child might not want to be best friends with Collin, and THAT IS OKAY. They might be weirded out by his wheelchair and THAT IS OKAY. Don't be disappointed and don't try to force anything. You may find yourself fielding questions later at home. You may choose to bring up Collin at a time when you feel comfortable talking more openly. Some kids need more time. The important thing is the open dialogue and that it is teaching openness over fear, genuine interest over dismissal.

I will never forget the first time a non-family-member kid asked if they could sit next to Collin at dinner. Never. But that question only came after six thousand other questions and after watching us and her parents love on Collin and play with him.

We are far from experts at this and there is still a part of us that dreads these interactions every single time - because they are not easy. But few of the really good things in life are. And we know it is 100% worth it to work through the awkwardness to get to the awesomeness.

Thursday, January 9, 2014

Something From Nothing

I sent this video to Collin's developmentalist for his last NACD evaluation.



If I try hard, I can imagine what this might look like to someone who doesn't know Collin or who isn't familiar with any kids who have CP or other special needs affecting movement: random, uncontrolled, maybe even sad.

But when I first saw it, I knew it was something big.

Of course, my first reaction was a gut-clenching thought that that big thing was seizure activity. Even after all of these years, it's a fear I can't shake.

But once I realized that he was perfectly aware of what he was doing, I watched him closely a few times and then looked for a chance to capture it and show it to someone.

When I skyped with the developmentalist, the first thing he told me was the word he had written down when he saw the video: typical.

Not movement resulting from wonky tone issues or just random brain activity. But muscles moving in direct response to messages from the brain.

To give you an idea of what a big deal that is, I have to take you back to Collin's younger days. I remember an early intervention therapist coming over and trying to motivate Collin to do something. She didn't say or do anything earth-shattering, but as I watched her doing all of the movement for him, I thought, "He can't hold his head up. He doesn't even know his head is there. He can't do any of the things that come with no effort to typical kids. Other kids have instinct and natural development as building blocks for developing skills. How is he supposed to find any motivation to take even the tiniest first step? It's like asking him to come up with something from nothing."

And so it has not been the walking or the talking that has preoccupied my thoughts when I thought of Collin's development over the years. It has been the discovery of his own body, of his ability to control it, and his consequent discovery of the world around him. In a word: motivation. The movement of eyes toward a face. The flick of a finger on a piano key. The conscious movement of arms and legs.

It's true that he's done things in the past that seemed to showed bodily awareness - standing, riding his tricycle - but they have all been things that were initiated by cues from me and only involved a few muscle groups. They were responses. This is self-driven exploration.

Something from nothing.

Thursday, January 2, 2014

Happy New Year!

We're back from our holiday hiatus! Here are a few things Collin did in November and December:

One of Collin's all-time favorites: feeding the ducks.
Picking out the Christmas tree.

Decorating it. (Well, supervising.)

Christmas fun with the cousins.

Christmas morning!

Ringing in the New Year with a viral infection and
impending pneumonia. Boo.