Thursday, January 24, 2013

The Day the Music Died

I recently read yet another of those "10 things to not say to a special needs parent" type list. I find them funny. One of the things that is on them over and over again is something like this:

Never say to a special needs parent "all kids do that" or "my kid does that all the time" 

It's belittling the disorder. It's belittling the work that the parent is putting out raising the child (assuming they are). It's usually an attempt at empathy that ends up being seen as selfish. I agree that "my kid does that all the time" is probably not the best thing to say to a special needs parent.


You stop hearing it.

I haven't heard that phrase in several months outside a clinical or therapeutic setting. When Jack was 3, we heard it every day. Well meaning blessings from those close to us. At 4 and 5 Jack was in a school setting and surrounded by typical functioning peers. The comparisons were the background music to our lives, but one day, the music died.

Let me state as clearly as I can, my son is High Functioning Autism (not PDD-NOS, Aspergers, SPD, ADHD, or anything else). He has several of the traits of those sub-categories, but he is Autistic. There is a new article going around posing the question "Do kids outgrow Autism?"  You can read it here. As we expand the definition of Autism, and we diagnose earlier and earlier (some children are now diagnosed as early as 12 months)... we greatly increase the number of misdiagnoses.

And that's okay. Those kids are hopefully getting services and awareness to their minds and their futures that they otherwise would not have had. But there's another side effect that increases - Hope.

Hope that your son or daughter is misdiagnosed. Hope that they will simply "grow out of it". Hope that his or her behaviors are simply something "that all kids do". Sometimes you've been in the game a long time hoping for something like that.

The reality is that raising a child with Autism (correction, raising MY child with Autism) is a lot of hard work. There are lots of fights. I get bit, bruised, bloodied quite often. I spend hours on homework assignments his classmates complete in 10 minutes. When I am successful (and I'm often not), I spend my entire day directing his actions. Dictating every moment of his day while still allowing him the freedom to make his own choices within them that allow him to develop as an individual. Exhausting.

And it takes its toll. I fight with my daughter because I'm pissy about the boy. I fight with my wife because I'm exhausted or frustrated with the boy. I fight with the school because I'm frustrated with the boy. I should just give up, right? I mean he doesn't need to read or write or learn math or learn to brush his teeth or dress himself or tie his shoes. He'd probably be happier with no demands on him. I'd probably be happier not having to place those demands.

And right when you get there, something comes out. "How are you doing, Daddy?" "I can do my seatbelt myself" "Jack got 9/10 on his spelling test" "Going to the park makes me happy".


Jack will not "outgrow" Autism. I will never experience the joy of hearing my child was misdiagnosed. I will, however, help him push that rock up the hill again... and find meaning.

For all of us.

To hear that sweet sweet music play again.

Thursday, January 17, 2013

The Asshole Song

Last week I had the opportunity to grab a drink with an old friend. Yep, a friend I went to Middle and High School with and lives a few miles away from me here in Los Angeles. It's rare. It's beautiful to "catch up" and talk about the "old days".

We hit a local, quiet bar for a late evening. It was great. We talked about movies and books. A little about our old friends. A few reminders of our more innocent, less complicated days. 

And a lot about Jack.

I got home and my wife asked me how "Billy" was doing. 

And I thought for a second and said "fuck, I forgot to ask". 

A late night text reminded me that I had spent the whole evening talking about Jack or myself. My wife has reminded me on several occasions that nobody wants to hear about Jack as much as we want to talk about him and to temper those conversations (she's better at it than I am). People care, and they want to know what we're doing, genuinely, but not all night for goodness sake. I'm glad I had this reminder. Special needs parents often feel alienated from friends and family because we feel that our friends and family just don't get what we're going through. Well, talking about it non-stop leads to a self-fulfilling prophecy. 

So, to my friends I've ignored, my friends I've talked over, and my friends I've bored... I am sorry. 

I needed someone to remind me that, I indeed, am being an asshole. 

And to "Billy" I owe you a drink. I owe you a drink and a conversation that starts like this... "Jack's fine. How are you?"

Because I do care.

Monday, January 7, 2013

The Kids Are Alright

Someone called in an anonymous bomb threat to Jack's elementary school this morning. You can read about it HERE. The children were evacuated from the school and moved to parking lot of Whole Foods across the street. The parents were notified by telephone of the situation and informed to pick up the children for the day. I was still near campus getting my coffee, so I hung out while the school was deciding what to do. It turned out to be a hoax. The all-clear was given after a three-hour intensive search, but all the children had been collected by then, so class was cancelled for the day.

I wrote an update on my Facebook page informing my friends and family that we were safe... And then the cynics came out. "This used to happen to us all the time at my school", "It's just some 'mental' trying to get attention". And, normally, I would agree with them (maybe not using the term "mental").

However, not when it's your kid.

R D White Elementary did an amazing job evacuating 800 students and staff. My hat is off to them. What disturbed me, however, were the number of news cameras around the parking lot. I'll come back to that.

The cynic in me wants to agree that this is no big deal. I want to believe that this happens all the time without credible evidence. I remember bomb threats from when I was a kid, and they weren't.

Planes were hijacked all the time in the 70s. They flew to Cuba and everyone went home. Until that one time they didn't on Sept 11th..

People make threats against schools all the time. The police are called and everyone goes back to class. Until some young man brings a machine gun (or whatever it was) and mows down a first grade classroom on Dec 14th.

So, we have a paradox. Should we be extra sensitive and careful regarding these threats now, or should we ignore them, hoping they don't draw attention and simply go away. I will tell you, honestly, I prefer the former, since it was my KID.

The media coverage may have been a tad excessive, granted, but the school reaction was perfect. Thank you, R D White Elementary and Glendale Unified School District for handling it the way you did.  Thank you for taking every precaution necessary to keep our kids safe.

ABC7, however, has some explaining to do. Reporter John Hartung and his cameraman were interviewing some some school officials and parents. This is newsworthy. But then they jumped at the chance to interview a 5 year-old that was leaving with her mother. I interrupted the interview by asking them not to interview 5 year-olds. I was told to not tell them how to do their jobs (a great answer). I told them a scared or nervous five-year old isn't going to give them any information the school officials or police or even parents hadn't already. The cameraman, told me I'm not the kid's parent and to leave them alone.

So, I did my best to stand in front of the camera and ruin the shot. They hated me. They told me where I could go.  The cameraman put a hand on my shoulder to push me out of the way, but thought twice and didn't. They moved on to interview a different parent and I crossed the police line to collect my son.

I shouldn't have made a big deal out of this. I accept that I was being an asshole. But, on behalf of all parents in the world, for fuck's sake, leave a 5 year-old out of this. It's a real douchebag move to get the ""story" from a 5 year-old and then claim "I'm just doing my job".

I am parent of a child at this elementary school. I am an active voice in my community. I am an advocate for the protection of children everywhere, so, John Hartung, I'm just doing my job too.

Interviewing a 5 year-old in a sensitive, frightened, overhyped, nervous, uninformed situation is simply wrong.   If you truly are "just doing your job"... then your job sucks.

*** Post note ***

I watched the ABC7 noontime broadcast, and none of the interviews with children were used. Thank you.

Wednesday, January 2, 2013

Hot for Teacher

My niece is a second grader at the elementary school I attended. It's a new school for her, the local GATE magnet in Fresno. It was an intimidating change for the 7 year-old. However, upon her first trip to the computer lab, the teacher asked her "Are you Jordan Capell's daughter?" Her eyes lit up as she explained that Jordan was her Uncle, and he lives in Burbank, and he is a writer, and he has two kids, and he is tall, and he sometimes has a beard. I actually live in Glendale, but close enough. The computer lab teacher was my 6th grade teacher, 28 years ago. So, my niece then threw my name around as if it were some sort of "calling card" at her new school. See, you don't have to live in Los Angeles to be a namedropper. She is an amazing girl and doing extremely well at her new school. Here is why I am telling you this story. My sixth grade teacher, who has had roughly 900 students since I was in his class, remembered me. I happen to be in Fresno on a day my kids were off school and I decided to pay him a visit when I picked my niece up for the day. I know I have changed a lot in almost thirty years, but he hadn't. We visited for 30 minutes or so and talked about life. He was extremely interested in my writing career and my son. He, finally, answered a question about a short story that we had read in his class about an amusement park that was really a population control center that I had forgotten the title of and most of my friends have accused me of making up whenever I mention it. He even gave me a copy of the anthology where we had read it. We hugged and said good-bye. A week or two earlier, there was a new "like" on the Find My Eyes Facebook page. The name was a familiar one. It was my second grade teacher. I instantly sent her a message to verify, and it was. She, too, told me stories of little Jordan in her 2nd grade class (Thinking back I believe it was actually a 2-3 combo class, but that's irrelevant). She posted a picture of herself and her husband on New Year's Eve and I remembered meeting that guy in our class. They were engaged to be married, and a smiling picture of them over 30 years later verified that the wedding did indeed take place. She's often commenting on my page. She asks about my writing and raising my son. She signs most of her comments with "ILYVM", which I assume means "I love you very much". And she signs her comments to all of her friends with that. I was a good student, not the best, but on the good side. I remember the names of every teacher I had from Kinder to 6th grade. I remember something special about all of them. I went to public schools all the way through graduate school. I wonder if my son is having the same experience. He struggles in school a way that I didn't. He loves his Kindergarten teacher (who continues to be his biggest champion). He speaks highly of his first grade teacher, although, he only recently has been spending the entire day in the classroom. 30 years from now, will they remember him? Amazingly enough, yes. I can not tell you how important getting in touch with my grade school teachers was. Sometimes I struggle with believing in myself, we all do. To come into contact with someone that remembers you from 30 years ago... from a sea of 900-1000 faces... but still remembers you!? Immaculate. From Kinder to 6th, they had names like: Del Carmen, Simpson, Wisener (now Baird), Macy, Dixon, Klassen, and Jost. I know at least two of them have passed, but they still remain important to my upbringing. I can not thank life enough that I was blessed to have them all. Thank your children's teachers. In 30 years, they might still be your child's biggest champions. Two of mine still believe in that 7 year-old little red-head boy in their class. And that, my friends, is pretty fucking cool. So, to the two teachers I mentioned (who read this blog)... Thank you. ILYVM.