The Hope Machine

Do you know

Can you even see

Who you are exemplifies

A miracle to me

Caught Up in your mystery

Breathing Hope, Breathing hope into me

You are a beauftiful contradiction

These lyrics from "Breathing Hope" by the brilliantly talented Natalie Nicole Gilbert remind me of David in ways that even I'm probably not fully aware of. Everytime I hear this song I see a slow motion video featuring my son in all his unique glory.

I'm not a parent who bemoans the fate dealt to me by whatever power decides to bring a disabled child into one's life. I embrace it. Which is not to say that it's any easier or more difficult than any other parenting experience. I know it's tough. All parenting can be difficult but I can not imagine a more rewarding gift than the love of a child and perhaps more signifigantly the realization that I could love so completely without any reservation or expectation of reward. The reward is in the experience. It's also not my intention to imply that a disability is a gift. It's not, but there are certainly crueler fates to dealt to children on this planet than this. I'm still angry at the thought that David's autism might have been prevented but that's a discussion for another time. Most importantly I love my son and all that he has taught me through his differences and his magic.

David lives in a world where hitting someone out of anger might even be an impossible reaction. His disability frustrates him but he has no hate in his soul, no boundless anger at the cruelty the world, no learned contempt for those different from him. He is pure and I suspect he will remain so for his entire life.

I want to make his life in this world easier. I want him to learn to communicate with others. To fully experience the world as much as his autism will allow. I know one thing though. I will be leading an angel through this world for the rest of my days and he will be breathing hope into this man, his father.

Please visit my friend Natalie Nicole Gilbert at http://www.natalienicolegilbert.com/ and @NatalieNicole on Twitter. I could listen to her music forever.

Super David Sunday

The Saints Vs. The Colts had to take a back seat to David having a bad day yesterday.

It's heartbreaking and frazzling when he's really upset, because he can't articulate what's wrong. You can't eliminate pain or illness from the list of possible meltdown causes because he can't speak and tell you that his mouth hurts or that his tummy is upset. He also has sensory integration issues where he will be in perfectly great mood and then he'll stick his fingers down his throat and induce vomitting . Was he nauseous and wanting to get rid of the ickiness ? It's hard to say because I know that I usually don't laugh with glee when I'm sick. For us that's a clue : "Uh-oh ! He's been laughing pretty hard for a while, better be prepared for a technicolor yawn !" To further confuse the issue he'll have bad patches of "meltdowns" where there may not even be an issue that can be be pinpointed. I imagine it's like having an anxiety attack without being able to articulate to anyone what's going on in your brain . I also imagine it's terrifying.

Super Bowl Sunday started out with David being his usual happy self. I was trying to settle down to watch and comment on the epic CKJR event (Christina Kim vs. John "Speed" Raser in a round of the most interactive golf spectacle ..EVER. ) Suddenly the tell tales signs of Meltdown started appearing. Ruddy skin, high pitched unhappy sounds, super violent flapping and of course the tears.

Cue the Daddy Anti-Meltdown Protocols : Bath ! Worked a little but he was still upset. Music ! His favorite KISS DVD helped a little, usually it'll calm him down immediately but not this day. I knew he was having a bad one. Peanut Butter and Homemade Bread ! He ate it but he was still clearly distressed. So we play the waiting game. A couple more baths... keep the music going. Mommy went out to get the SuperBowl Pizza. ( I love you Pizza Hut for having soy free pizza ! ) By the time the Pizza arrived and he began eating David was noticably getting happier.

All right , time for the Superbowl ! David is in a MUCH better mood and obviously feeling better .... and is happily hopping in front of the TV so we can't see the game. Ah, parenthood. :-)

P.S. I strongly suggest you read a story of amazing courage and love at http://bit.ly/bRtW1Q written by the wonderful Kristen Ongoy. It's a blog that never fails to make my heart swell... in a good way.

P.P.S. We got to see most of the game as David had gone to sleep right before halftime. ;-) Though he did block the screen mightily when he saw his boys KISS in the new Dr. Pepper ad.

Feeding The Boo Monster !

David likes to eat. A lot. Sadly, he's also allergic to soy so his menu can be a bit limited and we have to make great efforts to ensure that he doesn't come in contact with any of those dastardly soy or soy byproducts. Particularly at school. David also doesn't like to exhibit any of that ridiculous self-control that we silly "neurotypical" people are so hung up on. So we have to keep other people's food away from him too. Fortunately, his teachers and paraprofessionals are well aware of the dangers and likelihoods of the Boo Monster's food pilfering tendencies. The rest of the world ? Not so much.

At the Holidays I have to keep a constant unwavering eye on the Magic Munchkin. He'll attack any untended plate of food with gusto. He's also a big fan of open flames and ash trays. My wife and I quit smoking a while ago which goes a long way against us getting cancer and saves a lot of vacuuming because "ash tray" and " glorious artistic mess " are synonyms to David. The kid's is a master of disaster as artistic impression. We still have to go through a few vacuums a year.

David is also the only person I've ever met who doesn't like chocolate. He'd rather eat paper than chocolate. I have seen literal proof of this. He likes carbs though. Rice pasta and home made bread with peanut butter ? Loves 'em ! Potato Chips ? The best ! Granola with rice milk ? Ah-num-num-num ! He actually says "Ah-num-num-num" by the way .

I think David may be part fish for several reasons. He won't eat fish, he loves water more than anything and he he doesn't realize that you can eat too much. I'm always reminded of the horror stories about tropical fish who are fed too much and die or even worse Mr. Creosote from Monty Python's Meaning of Life. "David if you eat too much, you'll explode !" His expression and manner indicate that if he could speak he might say "Whatever, old man ! Feed Me Seymour !".

When I grow up I want to enjoy food as much as my seven year old son does. That boy knows how to live !