One Minute

This is not, perhaps, the most riveting video ever shot, but it did make my husband tear up.




Best part? This wasn't his best performance--he seems to do really well when I shut off the camera.

More Bliss

Without a doubt, the best part of Blissdom for me was that I left with a sense of purpose. For the most part, there's no one in my day-to-day life that has any desire to talk about my blog. They don't know what Twitter is and I'm sure they don't understand the drive I have to regularly discuss my life with strangers. At least one person laughed out loud when I told them I'd spent the weekend at a blogging conference.

Blissdom was the polar opposite of that. I talked and talked and talked and somewhere in the middle of all that, I realized what I'm doing here and better yet, what I want to do here.

Please bear with me as the sappiness factor is about blow sky-high.

I believe that my life is good--not perfect--but good. I believe that the problem with disabilities isn't the disability, but the rest of the world--a world that doesn't see the good and the beauty in difference. A world that isn't ready to embrace the unfamiliar. I'm not interested in a pity-party. I don't want anyone to feel sorry for me. I have crappy days, but I had those before Charlie and I'd have them if his brain had never bled and his heart had never failed.

I want this place, this space to be a resource--a place of inspiration, a place to learn a little something, a place of encouragement.

My first two years of college I lived in a dorm. On any given day, you could take a stroll and find someone else who was worried about their classes, who had relationship problems, or maybe just someone to go to the cafeteria with you. I remember staying up late, talking in the hallways and stairways about whatever was on my mind at the time.

I want this blog to be like that dorm. If only five people read it, then that's fine. I'm not blogging for money or recognition--I'm blogging for community. Blissdom made that clear for me and also made me realize that it's OK to be that kind of blogger. I can't be anyone else no matter how hard I try--I can only be me.

So here it is, my mission: I want live joyfully. I want to encourage others to do the same. I want to help other special needs mothers enjoy their children and maximize their potential.

Who's with me?

Me and my doppelganger at Blissdom. I was trying to avoid her, but Ellen insisted we take a picture together.

Blissdom '10

Back from Blissdom and had a great time! I don't know if you heard, but the Saints won the Superbowl last night. Whew! What a wonderful thing for the city I love so much. I'm still processing my crazy weekend, but here's a quick recap:

The Good:

• Met TONS of people. TONS. People like me, people not like me, and everything in-between. I like people, so this is good. I got to meet Allison from No Time for Flashcards who I've been chatting with on Twitter--she's got a Canadian accent! So cute.
  
• I met Ellen, another person blogging about raising a kid with special needs. Ellen has a 6'4" line backer personality packed into a five-foot frame. The woman is a complete fire cracker.



• I met Shamarr Allen--a trumpeter that my husband and I completely adore. He was actually there to play with Harry Connick Jr., but I was more excited about him. I told him I had his CD and he looked at me like maybe I'd had too many cocktails.


• I learned SO much. I learned about writing, being professional, having a footprint--all sorts of stuff.
  
• I also got to meet a lot of really well-known bloggers which is just cool. I met MckMama, Redneck Mommy, Megan at Velveteen Mind, and Cecily.
  

The Bad:

• I forgot my deodorant, so I kept sneaking back to the room to wash my under-arms with soap and water. SO embarrassing.
  
• I lost my wallet with my license in it. Some very trustworthy person turned it in to lost and found, though, and I got it back with twenty-three dollars still in it. I didn't even know I had twenty-three dollars! Getting it out of lost and found was a trick and it made me about an hour and a half late leaving the hotel.
  
• I learned so much that I'm sure I will be busy for months implementing all information. I'd love to sit down RIGHT NOW and get it all done, but I've got this kid and he keeps wanting me to feed him and play with him and stuff.

The Ugly:

• I was crazy-tired on the drive home. Luckily, I had books on tape and they kept me afloat.
  
• I don't think Charlie had one bath the entire time I was gone. Not one. I thought that was bad until I realized. . .
  
• He was wearing the same shirt I left for him to wear on Thursday. Scary, no?

Charlie after the Saints big win. He didn't know what was going on, but everyone else was happy, so why not smile?

Pictures of me courtesy of Ellen.

Amazing News

Well, I hoped to get a little video of it, but I couldn't, and I just can't hold it in any longer.

Yesterday, Charlie was taking multiple steps in his gait trainer. One foot after the other, over and over.

My baby walked.

I realize I might not see it again for another six months or something, but it's in there--it's really in there.

Feel free to squeal. . . .

Dilemma

So. . . you guys remember that I ordered a wheelchair last year? Well, looking back, I can see that I posted on September 29th about our wheelchair decision. Since then, I've heard exactly nothing from our wheelchair representative. Not. One. Word.

Today, they called me. A woman asked me, "did you know your insurance doesn't do pre-approval for blah, blah, blah?" Or something like that. I told her I didn't even know what that means. Basically, my insurance company doesn't do pre-approvals for medical equipment. So, you have to order the equipment and hope that they pay for it She also told me that I would have to pay 30% up-front, which is roughly 1700 dollars.

So here's why I'm upset.

1. It took them four months to figure this out.


2. If the wheelchair had been ordered and delivered prior to December 31st, I would have had to pay $0 because we met our deductible last year. I realize that these things move slow, but since the claim isn't filed until AFTER the chair is delivered, I feel like it was possible to have had the chair ordered quickly.


3. Back when I ordered the chair, the big dilemma was whether or not to get a tilt chair. According to the rep, the tilt chair didn't have self-steering wheels. Since then, I've had another special needs mom tell me that the newer models have both tilt and self-steering.


4. I wasn't given any choices with regards to seating. Barbara at Therextras very adamantly recommends a flat seat, and the rep told me they never do that. This bothered me, but it's not like I had a lot of options. Actually, I had exactly none, so what are you gonna do?


5. I Googled my wheel chair and the base model runs about $1600. I realize there's a lot more to it than that, but it seems like they want me to pay for the entire chair and then they're going to bill my insurance company another $3700. They'll be making a pretty sizable profit for some sub-par performance.


6. I heard through the grapevine that this company is swimming in debt and may go out of business. I'm worried that I get the chair from them and not be able to get any more service for it if they fold.
   

I feel bad. I mean, a rep came out to my house and measured Charlie and everything, and I'm sure he'll lose money if I don't buy the chair from his company. On the other hand, I don't think I should reward piss-poor performance with our hard-earned money--we don't just keep it in a tub and roll around in it in our underwear.

A source of mine has given me the name of another wheelchair representative who sells the same brand of chair. Should I just call them?

Has anyone out there ever tried to just buy their own wheelchair off the Internet?

Playing in our very own "Pond." Idea shamelessly stolen from No Time for Flashcards.

The Day I Lost My Mind

I am embarrassed to even write this, but I promised I would. . .

You see. It all starts with this bridge. There's an extremely long bridge, The Causeway, that connects where I live to New Orleans. By long, I mean 23 miles. At minimum, I cross this bridge twice week and often it is much, much more than that. You see, Charlie's Feldenkrais therapy is in on the other side, as is my brother, my parents, and most of the good restaurants. On my side we've got better public schools and lower flood insurance, which is why we live here instead of there.

Anyway, anyone who knows anything about anything knows that you DO NOT speed on the Causeway. You can go four miles over the speed limit and that is the absolute maximum. After that, well, expect to get pulled over.

Every time I get on the bridge, I set my cruise and cross the bridge with no problems. I pass multiple police officers without breaking a sweat. I'm a rule-follower when it comes to the Causeway. This is mostly because everyone knows that the Causeway has more money than things to do, so you best not become the object of their wrath.

At the end of the bridge, the speed limit drops rapidly from 65 mph to 35 mph and this is one of the places they love to pull people over. I know this.

Well, today I was a little distracted. I'd had an especially stressful morning, one in which I'd found out that I may have to cancel our February trip to Plano because I'm having trouble finding a companion, and while I like to play rock solid here on the ole bloggy, blog, it does take a village to raise a Charlie and some days are harder than others.

So! Distracted! Exiting the Bridge! Suddenly I realize that I am, in fact, exiting and begin breaking rapidly. Well, too little too late I found out. A few yards after the bridge, police officer steps out into the road. She points at my car and makes some hand gestures. Then, she points at the car next to me and makes some hand gestures. I think, "Whew!" I guess I slowed down in time and then continue on my way. I thought she'd been waving us on.

Not so much. Actually, the cop thought I was a fugitive from justice. She RAN to her car like the bionic woman and caught up with me three yard away where I was stopped at a red light. She gets on the loud speaker, "OWNER OF THE FORD TAURUS--PULL INTO THE U-HAUL PARKING LOT." Not good, right? Well, I pull in there, and then she makes me back out of a parking spot and continue driving through the parking lot and then on some more until she finds an abandoned parking lot in which to properly cite me.

I'm already not happy with the situation. I prefer to be pulled over in public location with plenty of public scrutiny. That's just how I roll.

She gets on her megaphone--I mean, really?--and tells me to get out my license, proof of insurance, and registration. I'm getting annoyed. It's taken five minutes just to pull me over, and I've got a Feldenkrais appointment that I have to pay for, whether we attend it or not.

The good girl in me is still ashamed for speeding and ready to take my punishment as quickly as possible. I'm not one to argue or try to get out of a ticket--if I've done something wrong, then I'm prepared to take the punishment.

So, she comes to my window and I hand her my license and insurance card, and say brightly, "I've got so many insurance cards, it's hard to figure out which one's current. Let me get my registration!"

And then she replies, "Why did you ignore me when I told you to pull over?"

I'm still trying to be nice at this point and say, "I thought you were waving me on. "

And she says, "NO. I did this."

And then she proceeds to do more of that crazy hand waving business and at that point I lost my ever-loving mind. I mean really. Do the police actually think that ANYONE knows what those crazy signals mean? More than once I've been at an intersection wondering if I should go. . . or not. . . and it's one thing to use it, and another thing entirely to assume that every blooming person on the planet has undergone police training.

And you know? She didn't have to be rude about it. I worked with surly adolescents for years and rudeness never got me anywhere. A simple explanation of the different signals would have made me a more competent driver--instead, she decided to power trip on me and for whatever reason, I snapped.

So I say "Sorry. I don't have a degree in hand signals. You don't have to get an attitude."

WHO DO I THINK I AM?

I'm lucky she didn't haul me out of the car and taze me just for fun.

So when I finally get my ticket, it's not only for speeding, but I have to appear in court for, you guessed it, failure to obey police orders. When she asked me to sign it I refused. I obeyed her orders! That's how I ended up in an abandoned parking lot! She told me that signing was not an admission of guilt--just an admission that I'd received the ticket and that if I didn't sign it, she could arrest me. It said right there on the form, "Not an admission of guilt," so I did sign it, but I tell you what, I was gettin' hot and indignant. I was stickin' up for the little guy! I was a freedom fighter! Ok, I was none of those things, but in the moment, I was feelin' it.

Of course, now I just feel like a hot-head.

So there ya go. The ugly side of Bird on the Street.

Finished Work

A while back I told you all about a piece of art I was creating for a young man who lives in a residential facility. I don't want to over-step, but I think it's accurate to say that he has had some issues in cerebral development, so while he is old in age, he is young at heart.

I really stepped out on a limb with this piece--it's larger than I usually do and it's also very different in terms of colors and materials. I went with BRIGHT colors because I wanted it to appeal to all ages. I didn't want it to be too cartoonish, though, so I did have to get rid of a Moose I'd painted that my Hubby said looked like Bullwinkle. (It didn't look like Bullwinkle other than the fact that they are both Mooses--Meece? What's the plural of Moose?)

His mom also told me that he loved to run his hands along things to see how they feel. This made me determined to add texture to the painting. You can feel the waves, and the blueberries and lobster have been made three-dimensional with paper mache.

Like I said, very different than my usual stuff, but good for stretching me and also good for my heart--making this piece for a young man in special circumstances.

Tomorrow I promise to tell you all about how I almost got arrested. . .