Special Needs

Oct 092011
 

I just got this email from my friends at Autism Speaks…

October 9, 2011

Dear Jackie:

Thank you for all of your calls and e-mails over the years, this session and during this hard push to get Governor Brown to sign SB 946, the autism insurance reform bill, into law.  Your advocacy truly played a great part in the process.

We are pleased to announce that your bill has officially become a law. Moments ago, Governor Brown signed the bill making California the 28th state to take important steps to end autism insurance discrimination.

I can’t tell you how thrilled I am for those families who otherwise would not be able to get much-needed services for their children, as well as adults with autism who now can take steps to bring more quality to their own lives.

 

THANK YOU, CALIFORNIA!

Sep 022011
 

Our family is no stranger to odd, sometimes off-putting comments. With three kids, one of whom was internationally adopted, another diagnosed with autism, and a third who’s seen his fair share of the inside of a hospital room with scary asthma episodes, it seems there’s always someone waiting in the wings, ready to ask one of their head-scratching questions or give me their unsolicited opinion. Whether I get “How much did you pay for her?” in the grocery store or find myself confused by the “You’re so good with him. Are you a teacher?” pat on the back at the playground… it’s not uncommon for me to look around, wondering if I’m being Punk’d by some “adult’s” random thoughts.

But unlike when I was new to this rodeo, I don’t usually get offended by it, that is, if they’re not delivered in a mean-spirited way. But occasionally, I’ll be blindsided by a comment that smacks me in the face and leaves me with a paralyzing fear of the insensitive, unaware world in which my children are being raised.

Yesterday was one of those days. I picked the boys up after school and rushed them over to the dentist for a 2:30 appointment. It just so happened that Thursday at 2:30 is also the time that an aide comes to work with  Jacob, our, bright, affectionate, funny seven year old who also happens to be on the autism spectrum. (I don’t believe in labeling  a kid autistic after I was once given words to live by, “He’s Jacob first, not a diagnosis.”)

Anyway, his tutors, trained in Applied Behavior Analysis, help Jacob in a variety of ways and have given our entire family tools to be a productive, happy family — something I wish was mandatory for all parents of any child. From social skills to daily chores to self care (he now is very aware how his hair looks, which cracks me up), Jacob works ten hours a week to learn important life skills. Since “M” was scheduled during the dentist appointment time, I thought it could be a great opportunity for her to help Jacob work through some of his “task avoidance” difficulties and talk him through those annoying X-Rays, without the emotion and frustration a mom sometimes can’t hide. Which is why, for the first time ever, I even mentioned that Jacob was on the spectrum, something that never seemed necessary during previous appointments.

All went better than expected and both boys got a great dental report. But as the pediatric dentist was finishing up with Jacob, she said, “I was going to do the fluoride next. Do you think he’ll tolerate that?”

It seemed a little odd to me how she was talked to me like he wasn’t in the room, even though she was completely over his face with her mouth in his hands. But he was totally distracted by the movie blasting from the ceiling-mounted TV and wasn’t exactly chatty lying down with tools in his mouth, so I went with it.

“Well, let’s give it a shot,” I said, feeling positive that it would all be totally fine. I couldn’t be positive but I was pretty sure he had done it before, information I assumed was in his chart.

“Okay, I didn’t know if he would tolerate,” she responded and awkwardly danced around the topic as she mentioned she’s had other kids like him. “I know they’re sensitive to touch.”

Suddenly, my whole body tensed up.

They? Who’s they?

Ohhhhhhhh, THEY! You mean like kids with autism… THEY. I get it.

Now I’m not sure if I’m feeling angry or confused but I can feel my eyes welling up. If there’s one place I expect my child to be treated like a human being and not lumped into a stereotype with the millions of others with the same diagnosis, it’s with a medical doctor who specializes in care for children. I understand that she was trying to within potential limitations but there was definitely another way to say it.

A wave of sadness felt like a tsunami, overtaking the wave of anger I had felt. I know that a dentist’s office can be a factory of constantly-moving new faces. Please, my dentist wouldn’t know me if I tied him up with the floss I don’t use nearly enough. But every patient, child or adult, special needs or not, deserves to be treated as an individual. Would she use “they” to someone of a specific race, religion, age or sexual orientation? I doubt it.

After talking about it with a friend, I have decided to take her advice and address the topic directly with the dentist, respectfully making her aware of how her words — while not intentionally hurtful — can affect a family. Because while I know that I can’t change the attitude of the world around us, there is a time and place to stand up, protect my children and use my voice to make a difference for others.

Leave your opinions, experiences and weird questions in the comments!

Jun 052011
 

To the naked eye, it’s clear that my daughter is adopted. Double takes with a smile, stranger comments complimenting us for being “so good,” and those roundabout questions… “where’s your husband from?” when I’m alone with Lucy — there’s no escaping it and I’m cool with that.

But every once in a while, something comes up that flips my heart inside out, makes my head spin and I feel this profound sadness deep down. That happened tonight, as we saw Kung Fu Panda 2 in the theater. The idea that Po — the main character voiced by Jack Black — walked around feeling so lost and confused about where he came from, my heart was breaking for what my daughter may face in the future.

And then I got angry.

(SPOILER ALERT) Eventually Po discovered that his parents hadn’t actually given him up but that his feathered nemisis had torn them apart. I get that it’s a movie, but 1.5 million children in the U.S. are adopted, over 2% of the child population. What does that say when on the rare chance they see a movie they identify with, that the parents didn’t actually intend to give the child up. Do you think maybe we’ll have more than a few fantasizing, “Hey, maybe that’s my circumstance, too!” I hate the idea that the film could trigger even more confusing feelings in children who’ve been adopted.

One thing I did appreciate about the movie was the recognition of first/birth and adoptive fathers. That’s always been something that has bothered me. I know in our own home, my daughter understands that she had another mom who couldn’t take care of her and that we’re her family. But it hasn’t yet occurred to her that Jeff, too, has adopted her (never mind getting into the topic of siblings). Oftentimes, books/movies/people, even we, talk about how things came to be without really getting into the idea of a birth dad. And not knowing the birds and the bees at this point, it hasn’t ever been a question of who her father is. While that’s a comforting thought in some ways, I’m putting myself out there to say it can be quite painful when you appear to be the only replacement in your child’s life.

(BIGGER SPOILER ALERT) And then there was the end… it’s obvious a Kung Fu Panda 3  is in the works, given they ended the film with Po’s biological dad realizing Po was, in fact, alive and well. It was pretty clear the next chapter will include a search for Po, unbeknownst to the panda or his dad, the goose. I hate even imagining the internal battle that will go on when Po is left to ponder the nature vs nurture phenomenon.

Without giving myself too much time to process my feelings about the movie, I’m curious to hear from other parents. How did you feel about the adoption portrayed in Kung Fu Panda 2? And the bigger question… Where’s that inner peace they speak of?

Mar 042011
 

Since writing my very first blog post back in 2007, I’ve been like a human turtle, sticking my neck out long enough to be smacked on the nose, sending me quickly back into my shell.

I’m done with that.

I have way too much to say to let comments and opinions get to me. I see each and every one of my life experiences and challenges as a gift, a chance to grow that much closer to being that person I want to be (and know I can be)… and a chance to connect with others who have either been there, might soon find themselves there or maybe know someone there and they want to be able to support them.

Whatever higher power you believe in, I just can’t fathom that my life is anything but an opportunity to make my mark on earth. I will make my share of mistakes and probably beat myself up way more than is really necessary, but I promise you that when my time is up, I will have done something to evoke positive growth and change in more than just myself.

That being said, some discussions are best kept in circles where they can be appreciated and respected. That’s why I have created a second blog. On RefrigeratorMom.com, I will be talking all things autism, from diagnosis and navigating services, to school IEPS, ABA, treatments, diet and anything else I can get my hands on. I’ll be sharing conversations with experts, other parents and researching every possible (some controversial) options families with autism choose.

While autism will always be part of this blog as well — come on, it’s a huge part of my life — it’s not the place for diving into all that I feel strongly about. So come on over and say hi and read my first post: “Telling a Child He Has Autism.”

So, what would you like me to not shut up about?