Divo.

I tried to make it a Melatonin loving household.  Personally, I loved the Melatonin.  It was like a magic potion.  Within 30-45 minutes of a 1 ml squirt in the boy’s mouth, he’d be passed out in dreamland.  He was going to bed at a decent hour.  He slept through the night.  And hallelujah, I slept too! 

Then, Saturday before last, he had the mother of all meltdowns.  I was shocked and confused.  I wrote about it here.

Shortly after I wrote my post, I read this one by Jen over at Still Looking Up.  Thank you Jen!  The light bulb in my brain physically came on.  The Melatonin was the only change in my son’s routine and his life.  I stopped the Melatonin.  He quit grinding his teeth.  No more freaky meltdown.  Everything is back to ‘normal’.  And when I say “normal”, I mean, well, you know…  And he’s back to going to sleep between 10:30 and 11:30 p.m.

I get up at 5-5:30 a.m.  It kinda sucks to be me at 5:00 a.m.

That’s how this Monday morning began.  I knew I had to get up extra early because our local PBS television station was coming to my son’s school to tape him in class, interacting with the other students and at my office doing programs run by his ABA tutors. And they were going to tape me.

A couple of weeks ago, our wonderful neurologist, Dr. Chez, asked for my permission to tape my son’s follow up EEG visit with him for PBS.  I was excited.  After all, the whole purpose I began blogging in the first place was to “increase awareness of autism”.  So, I agreed.  Those of you who know me on Facebook would have seen this photo of my son with the cameraman, Kevin that day:

He LOVED the camera. What a surprise.

While we waited for the doctor, the producer of the program, Kelly Peterson, spent some time talking to me.  I shared as much information as I could think of with her, including promoting and giving her a copy of Wit and Wisdom from the Parents of Special Needs Kids, the book on my sidebar, that is available through Amazon that has the great collection of essays by autism parents.

I asked if there were plans to interview adults with autism.  She told me that yes, she was interviewing one adult male (age 42) with autism, a 19 year old female, a family with two children ages 3 and 6 and my son.   She’s interviewed Dr. Chez and someone from the UC Davis MIND Institute where my son was diagnosed as well as from a regional center where partial funding for services is derived.  The program, I found out today, is scheduled for a half hour.

Kelly Peterson and cameraman Martin Christian in our office for interviews.

I tried to provide as much information as I could.  Kelly is bright but how much could she possibly cram into a 30 minute slot?  She agreed that autism could be the subject of a series, on funding alone.  What she actually makes with this program remains to be seen. I don’t know if we will make the cut or whether it will be a small clip, but, regardless, I wanted to help.

During it all, I asked if the program would be aired in April for Autism Awareness Month. Ironically, she admitted she had not known about Autism Awareness Month until after she began working on the program when it was already scheduled for late May.  So, even though most of us who read a blog like this one, live, eat and breathe autism, an intelligent, mainstream media producer did not knowWe cannot become complacent in our circumstances.  Spreading the word is important to help our own children.  Learning replaces ignorance, and promotes understanding and acceptance in place of bigotry and hate.

As Kelly and I talked in Tootles’ neurologist’s office, I shared that I planned to light my hair up blue for Autism Awareness at the end of March.  She asked if she could tape it.  I feared the idea, but I said yes.

She asked to tape my son at school.  I arranged it.  I explained my understanding of ABA to her and offered to arrange an interview with our behavioral therapist who has made an incredible difference in my son’s life.  And so it was set to happen in my office.

And that is how, with less than six hours of sleep between Sunday and Monday, I woke up to prepare for a morning of television taping and interviews for my son, his class and for me.  My 15 minutes – my chance to make someone, somewhere aware.  

The program is set to air in late May or early June and we will get to go to a screening before it airs!

The amazing part I learned, through all of this, is the good in people.  I see it in the fierce determination of Kelly Peterson to gather information to share with the public from people who know, even though she is not personally touched by the diagnosis.

I saw it in the director of my son’s school who granted permission to tape there.  I see it in my son’s kindergarten teachers every day, and especially today, donning their blue hair extensions in support of my son and my effort to bring awareness of autism to our community.

Mrs. F, Tootles' teacher rocking her hair extensions!

Mrs. C, Tootles' Assistant Kindergarten Teacher has a little blue in her hair too!

I saw it in my son’s senior tutor who rocked the blue today too.

Tootles' senior tutor lights herself up blue too!

I saw it in the parents of my son’s peers, every single one of whom supported by son by signing a release allowing their child to be taped.

My kid - the ham.

And most of all, I saw it in the tremendous support and friendship extended by my son’s kindergarten peers, who are all neurotypical but clap and support and talk my son through his difficulties each and every day, and then, did it again in the classroom on Monday with the cameras rolling.

As for my son?  He now is quite certain he is a “movie star” and a “TV star”.  And like any run-of-the-mill TV star, he’s looking for a contract.  This morning, I said, “Are you going to be on TV today?”  His response was this,

“Yes.  You’re [“I’m”] working for a Wii gun blaster at Toys-R-Us.  Mommy to get it for you [me].”

Negotiations are tough but underway.

 In contemporary Italian, diva and divo simply denote much-admired celebrities, especially film actresses and actors, and can be translated as “(film) star”. Wikipedia

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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25 Responses to Divo.

  1. Mom2MissK says:

    I admit, I tapped the link to your blog today with a little apprehension… I was sure we were about to be seranaded with “Whip It” lyrics (apparently, I misspelled “Devo”)

    What you’re doing for awareness is really incredible, Karen. I’m humbled. From where I stand at them moment, I *want* to follow in your footsteps and help share the message… But everything is just too new for me. I talked to my husband about the blue hair last night and he likes the idea… So, maybe – at least it’s a start 🙂

    P.S. we saw all T’s teachers with the blue hair… Where’s your picture?

    • solodialogue says:

      Trust! 😉

      Thanks for the nice words. But I’m just a goofy mom trying to throw enough out there that I make a tiny, tiny difference. Then, maybe there is a tiny chance the world will be more accepting of my son. If it requires blue hair, lips or skin, so be it. I’m not too good to pick what awareness I get.

      Yay for your hubs! Looking forward to your photo of blue hair… and you know tomorrow is Wordless Wednesday. 🙂

  2. Flannery says:

    OHMYGOSH, I am sooooooo excited for you, and for the fact that autism will be getting some airtime!!!!!

    You are a rock star! Be sure to update us on the air date. I will plug it over at my site!

    Seriously, this is super awesome!

    • solodialogue says:

      You are so silly. As far as I know, it’s just a local program. But being a mom, I will definitely update everyone and link to it if I can. I hope I don’t sound too stupid, if they use anything I said. It’s hard to remember everything you want to say when the camera is actually rolling. More importantly, I hope Toots comes across as he really is. 🙂

  3. Lana Rush says:

    LOVE IT! You and Tootles finally getting your 15 minutes of fame – and all for a great cause! You’re going to let us know when we can watch it, right?? 🙂

    • solodialogue says:

      It’s so funny Lana. When they first were first taping him at Dr. Chez’s office, we were on the way and he says, “I have to wear a helmet” -I’m all like “What?” He thought to be on camera – for reasons unknown to me – he’d have to wear a helmet! Too funny. Now, he’s an experienced “divo” negotiating for Wii accessories.

      I think it’s just a local program but they will be giving me a DVD and I will try to link to it here! (Unless it’s too humiliating – wait – who am I kidding? I will link to it here!) 🙂

  4. Grace says:

    You’re famous!! Awesome!! And I can’t say how impressed I am with your son’s doctors, teachers, and classmates. I feel like I’m completely adrift over here by myself. The other parents in MY kid’s class?? Meh.

    Watch out, though. If this keeps up, Tootles will have contract demands worse than the Foo Fighters.

    • solodialogue says:

      Wouldn’t that be cool? Maybe George, Johnny, Orlando or Brad will give me a call – I know Ryan doesn’t do it for you so why mention him?

      I am blown away by the support we got from the kids and the teachers and our neurologist. It makes the hard stuff a little easier. And, yeah, my child does like to work his mom. Foo Fighters – nothin’ compared to this kid’s demands…

  5. Lisa says:

    Love, love, LOVE what you are doing for Autism Awareness!! I am so heartened by everyone at Tootles’ school who is so supportive. That is awareness and acceptance!

    I bought my electric blue hair extensions…have to put them in this weekend!

    P.s. Love the last picture of Tootles!

  6. Monica says:

    Love, Love, Love this update. Thank you Karen & Tootles for representing! I’ll be able to watch the broadcast since we have the same local PBS. Yay! Please be sure to hive us the date it airs. 🙂

  7. blogginglily says:

    hahah. . . is that an actual shirt? Did you get that for him recently?? AWESOME.

    You’re an autism rockstar supermom movie star now? There’s gotta be an award for that or something.

    • solodialogue says:

      Ha! No – he’s had that for a while now but doesn’t it totally fit?! I wish I was somethin’ somethin’ but nah I’m just a loud mama looking to spread a word! 😉

  8. Broot says:

    Oh wow!! I hope there will be a link online for me to see it. We don’t usually get PBS programmes here.

  9. jentroester says:

    That is such a great opportunity!!!! I hope it will be online so the rest of us can see it, too!!!!!

    Since we stopped the melatonin, Ben has actually been OK with sleeping. Better than before we started it, so maybe it kicked him into a good sleep rhythm…at least this is what I am telling myself. I think it took a few days for him to detox, though. He said his eye were doing weird things for like 2-3 days after, but hasn’t said anything since. My husband is all upset that I ever put him on it, though he was FINE putting K on REAL drugs for a while…ummm…ha…oh well.

    • solodialogue says:

      LUCKY! Glad Ben is sleeping better! That’s terrible how he reacted to it. And severe. I will forever be grateful for that post, Jen. Thanks. And husbands! Don’t get me started!

  10. very interesting about the melatonin. I will watch how my youngest is effected. He only has it two times a week, or so, but has weird mood swings. Thanks

  11. Sharing on my facebook page today. The group has grown into a fabulous community. NO pressure to rejoin. lol ~ Sam

  12. eof737 says:

    Hold onto that melatonin… and the photos rocked. 😉

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