Tuesday, May 4, 2010

It's The Little Things 2 : Electric Boo-Ah-Boo !

I have to apologize for the time between posts. I've lost my summer gig at the golf course, or to be more precise, I wasn't asked back to work , and for the last month I've been suffering a bit of an existential crisis. For all my failings the one thing I've always been proud of is that I could work my butt off to help support my family. Plus I really liked the work. I've been a little depressed and I like to have my blog be a place of hope so I haven't written in a while.

On to better things.

My son David, as many of you know, has low-functioning autism. While his attitude is better than anyone I've ever met he can't do a whole lot of the things that we take for granted as parents and as human beings, so every little milestone is *HUGE* to us. Communication through speech is one of those things. David isn't quiet, he can vocalize with the best of 'em. He has a wookie-like noise, a Gamera-like noise and a Paul Stanley like yodel. But...

We got a word out of David... kind of. He says "bubbles". It's actually more like "bubba" and while the "b" consonant sound has always been in his arsenal he uses "bubba" to get us to blow more bubbles which means that he's not just vocalizing. Dude loves bubbles. They have to be real live bubbles though. I tried to get him to watch Lawrence Welk and he didn't even seem to care about the music much less those two dimensional bubbles. His teacher called me the second she heard him say "bubbles" for the first time. We can't get our hopes up that he will ever speak more than a few words because there are consonants that seem impossible for him to handle, but we won't give up hope either.

The other form of communication is rudimentary signing and we got a little of that too. The Boo-Monster signed "more" when he was at school and wanted more food at lunch. They have video footage of this so we know it to be true.

Speaking of lunch he's finally mastered the art of the drinking straw. One of those activities that we might think of as being as easy as breathing. I have realized that it is not. David's been trying for years but now he has it.

I saved the best for last : The other day David put on my shoes and walked around in them and then came to get me to give him a bath. That is as close to neuro-typically imaginative play as he's ever gotten. It blew my mind.

As soon as I figure out how to walk in his shoes, metaphorically speaking, we'll make even more progress.

Tuesday, March 23, 2010


Shortly after David was diagnosed with mid to low functioning autism I used to to get a little miffed when people would say things like "God would've never given you an autistic child if he didn't know you could handle it ".

Wait. Was I supposed to be "thankful" that my son was given a dibilitating condition just because *I* could handle it. Heck, give *me* the whammy, not my son, if you don't mind. Never mind the fact that I've seen parents that couldn't handle being parents even under the best of circumstances.

Still there was some truth to those statements and I knew it.

When I was a little boy, a little younger than David is now, I had a friend, Corey, who lived next door. We played together frequently and he had some kick-arse toys, including, what I thought was a *cherry* rocking horse. I loved the rocking horse so much that I asked my parents for one. I was told that I was too old for this particular magical rockin' steed.

Too old ? How could this be ? Corey was a year older than me. Now I was no math whiz but something wasn't right there.

Later on I saw Corey sweeping the sidewalk in his underwear to avoid a bath that his Mom was trying to get him to take. It was then that I started to understand that something very different was going on next door.

Clearly, there was a horrific monster in their bath tub ! As a high-strung easily traumatized child I asked my Dad about it. One never knows if a monster can traverse from tub to tub and wasn't in a hurry to find out. I approached the subject cautiously trying to avoid any mention of monsters.

My Dad explained to me that Corey had Down's Syndrome. I'm not sure if my Dad described it as such. He may have used a word I tend to bristle at now. He certainly didn't use the truncated version of that word that I have a much more visceral reaction to. ( A subject for another time. ) My Mom had a brother who was so severely mentally handicapped that he "had" to be institutionalized and as such I know my parents would have never intentionally used a pejorative term for a mentally challenged person.

We moved away a little while after Corey's behavior was "explained" to me but I know we played together after I knew of his condition. I probably I didn't look at him quite the same way but I knew one thing. I sure liked him a lot.

So it was that growing up I never thought making fun of the mentally disabled was *ever* appropriate. I've tried to always dissuade people from such behavior particularly the use of certain words. I've always tried to be supportive , patient and understanding of those with special needs.

So I *guess* that means that I was ,in fact, an ideal candidate to parent a child with a disability and I have to admit now that the thought of it being preordained doesn't bother me at all. You see Corey taught me well . More than that my beautiful son taught me what life and love are all about.

Thank you, Corey, wherever you are.

Tuesday, March 2, 2010

It's The Little Things

Today David's teacher , Ms. Mary, called and detailed with great exuberance what a wonderful day David had. He managed to work the drinking fountain on his own by pushing the button... with his belly. Ms. Mary also went into a gleeful account of how, after she said "Wheeeeeee" when pushing him on the swing, he repeated the syllable. David said "Wheeeeeeee"not once but several times. Ms. Mary made a point of letting me know she had witnesses to this one. That was big time. Finally Ms. Mary was told that he put both arms into his coat by himself, though she admitted, that she personally did not witness this.

When David returned from his triumphant day I gave him his bath and fortunately Mommy was home so I could show her his newest trick. I handed him the bath plug and asked David where it went. He threw it on floor of the tub and kicked it over the drain. Bonus ! GOAL !

David is seven.

As many of you know David is in the low functioning end of the Autism Spectrum. Every single tiny step in the direction of "neurotypical" behavior is like winning the lottery. Even if sometimes that behavior borders on sneaky. After his bath today David gave me his customary drying hug, when I realized that what he was really after was the toilet paper sitting on the shelf behind my head. He gleefully ran off, soaking wet, giggling and flapping a long piece of TP.


BONUS : One day after I posted this entry David's teacher sent us of a picture of him drinking without assistance from the drinking fountain. Once we get a hold of a scanner we'll post 'em !

Wednesday, February 17, 2010

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 and @NatalieNicole on Twitter. I could listen to her music forever.

Monday, February 8, 2010

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 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.

Tuesday, February 2, 2010

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 !

Thursday, January 28, 2010

David's Top Ten Fun Things !

10. Unraveling things ! My boy has been able to unravel carpet, throw blankets, sweaters and the time space continuum. This activity is inspired by his great love of...

9. Strings and ribbons ! Perfect for creative flapping. I've got to show him some rhythmic gymnastic footage. He might be fascinated by the grace and beauty of the event or he might think "Well, they *are* amateurs I guess I can cut them a little slack." I've seen him create knots in things within thirty seconds that I can't untangle in thirty minutes. Mastery !

8. Using Daddy as balancing beam. David was walking at seven months before his autism took him in a different direction but he never lost his amazing balance. One of his favorite things to do is put one foot on each of my legs while I'm sitting. Then he stands up and does some surfing. I hope he decides this isn't fun anymore before he turns ten. Can bruises have bruises ?

7. Doing dishes ! Well, sort of... he stand in front of me while I'm doing dishes and goes on suds destruction duty. If he's got a string or ribbon it gets a dunking. One thing more fun than flapping ribbons ? Flapping WET ribbons !

6. Kicking off his shoes when he gets off the bus and sitting in the snow. My friend and brilliant golf / life coach put it best when he asked when it was that we forgot the joy of kicking off our shoes and sitting in the snow. Tomorrow when my munchkin gets off the bus I might join him in this activity. Perspective ? Yes, please.

5. Bouncing ! Neither Tigger or Chuck Taine has anything on my bestest buddy. The world is David's trampoline.

4. Weatherscan powered by The Weather Channel. Weatherscan is basically Local on the 8s non-stop. Groovy music and lots of radar maps ? David's swaying time !

3. The consuming of and/or annihilation of food. 'Nuff said.

2. KISS, particularly their "Unplugged" session and the KISS:Symphony DVD. If David is in a terrible mood or having a meltdown. I put in a KISS CD or DVD and David almost always instantly calms down.

1. BATHS ! Tempest in a tea pot ? More like typhoon in a tub ! No matter how many times I start the bath water and explain to David that " Daddy doesn't want to get soaked today" I still get drenched along with the bathroom floor and the three of four towels that I use to sop up the flood. He loves the process though and what makes David happy usually makes Daddy happy... no matter how many times I say "Augh!" after a particularly devastating wave from the tub.