Sunday, June 20, 2010

The Good, The Bad & The Ugly

In honor of Father's Day, this week's blog will be written by the man that I am honored to call my husband and the man that my children have the privilege of calling their father. His words begin below......

I love people-watching and California has plenty of great places to do it. Some of my favorites to do it are Santa Cruz, San Francisco, Hollywood, Disneyland and Venice Beach. Another good place is my hometown in the east bay...except, it's usually my family that puts on the show.

As a father of a child with special needs, it's a part of life. People stare. Some of them are better at hiding it than others. Some don't even try. In a way, it's almost like being a celebrity...except no one asks for an autograph. Actually, we have had our picture taken at Disneyland. More on that later.

It's okay. We're used to it. Stare. It's hard not to. We are a family of six plus a service dog. It's hard not to make an entrance. We've tried. Not making sense? Let me paint a picture.

It's Sunday morning at your typical mega-church. The service wraps up and you pick up your kids from Sunday school. You are chatting with some friends in the courtyard as people head into the next service. Then you notice a family of six...and a dog...emerging from the handicapped-accessible area right next to the courtyard. It's hard not to stare at six people and a dog walking into church. It's hard not to do a double-take when you are standing in line to pick up your kid from Sunday school and you see a man walk around the corner with his son with special needs and service dog.

We are the type of family that gives people-watchers something to do.

As a father of a child with special needs, I rarely get asked what it's like. Not surprising, I suppose. People don't want to say the wrong thing or run the risk of offending. I understand because I am the same way. If someone did ask me, though, here is what I would say: "Mostly good times, but there are bad times and even ugly times."

Let me explain a little bit about each, starting with the bad. Down syndrome, by its very nature, is delayed-development. Take Dylan's teeth, for example. His first four teeth (at age two) were molars. He never learned to chew properly until some very recent break-through therapy. Most of what he still eats is...well...soft, blended, or baby food. Not knowing how to chew properly is a bad thing. After all, how do you teach a kid how to chew? Isn't that something that all infants just learn on their own? Apparently not.

Dylan does not have much of a sense of danger. That's a bad thing. He can wander off with little or no regard to his own safety, which is a huge part of why we got him a service dog. Yoko is a trained SAR (search and rescue) dog.

Dylan can be very strong-willed, especially when it comes to mobility. If he doesn't want to walk somewhere, he will sit down in matter where we are or what we are doing. He simply will not budge. Imagine you are at a mall and your son doesn't want to come out of a store. You take him by the hand and he plants himself down in the middle of a walkway. Imagine you park in front of your child's school and you get out of the car to walk them to class...except your 65 pound son will not get out of car. That's a bad thing. That's another reason we have Yoko. She gets him moving because he wants to walk with her. It's that simple.

Everything takes longer than it should. Most things are more complicated than they should be. Meticulous planning is an essential part of our everyday life. If we don't plan, we pay the price...and put on a great show for people.

How about the ugly? I won't go too much into this one, but here are some things to ponder. Potty-training is something we didn't even like to talk about until Dylan's enormous progress this year. Those 2:00am diaper changes just might be a thing of the ugly past. He'll hide Yoko's chew toys and then give her REAL toys for her to chew. The result is a...very...ugly...toy. He will ask you for something and if you say no he will keep asking over and over and over and over and over and over and over and over and over...well, you get the picture. It's enough to give you an ugly attitude if you don't learn how to cope, which we have. He likes to fall asleep on the couch so that he can be carried to bed. He's 65 pounds, people. It's an ugly habit.

Now for the good, and there's plenty of it. The things that mean most to me are the little things he does. The "Dylan" things. He watches Disneyland rides on YouTube and lives in, raising his hands and screaming to the "Matterhorn" video. He falls asleep in some of the most unusual places & poses: middle of the stairs, middle of the floor, top of the table, and a hundred other odd places that make you just laugh your head off and reach for the camera. He cuddles. How may parents still get to cuddle with their nine-year-old? He loves to color. He is just so proud when he finishes a picture and shows you. He loves to read and write. He loves animals. In fact, his love for animals is infectious. His love for a lot of things is infectious.

So here’s the deal with people taking our picture. Have you ever been to Disneyland? Have you ever seen a dog there? Have you ever seen a dog on the Pirates of the Caribbean or Alice in Wonderland? No? If you did, would you take a picture? Some people would…and did. That’s okay. I’m glad we made their day. It kind of made ours.

My wife and I have often thought: It sure would be interesting to get inside Dylan's head for just five minutes and see what he is thinking! Today, I had a revelation. I actually got a glimpse of what is going on inside Dylan's head. You can tell what someone is thinking partly based on what they write. Dylan drew some pictures and then took three or four pages and wrote down a bunch of words. Here they are:

Snow White Ride
Water park
I Love Mommy Jeremy Daddy Dylan Dylan
(Yes, he wrote his name twice. I guess he really loves himself. I know he loves Greg, Savannah and Yoko, too!)

That's one of the things that make it all worth it. I'll take the bad and the ugly because the good is really, really good. No, Dylan is not your typical nine year old. His mind works very differently, but everyone that knows him will probably agree:

1. Dylan is very loving and accepting.
2. Dylan doesn't hold grudges.
3. Dylan isn't afraid to show his true feelings. He always lets you know exactly what he is feeling, even if it isn't verbal.
4. Dylan can always bring a smile to your face.

Sometimes I ponder this thought. Maybe Dylan, at age nine, is more like Jesus than I will ever be.

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