soccer goal

Who’s Got the Problem Now?

In case you haven’t noticed, I don’t blog much lately. I continue to struggle with the balance of writing about life experiences that others may relate to and the idea that I’m exploiting my kids. But this one had to be told.

The following is a recent conversation between my almost 8-year-old son, who is on the autism spectrum, and me. I’m interested in hearing your thoughts on this one.

J: I asked [insert boy’s name] if he wanted to have a play date.

Me: Oh yeah, what did he say?

J: One word: “NEVER.”

I could feel my stomach, heart and throat begin to mingle together, ready to get into a quiet yet violent battle within my body. I could feel my face get hot, while my breathing began to pick up the pace. Before I could ask any questions, he continued.

J: He said never because his parents told him that I have problems and he can’t play with me.

My eyebrows raise and my mouth drops. What made this conversation so interesting is that the boy in question and one of his parents were only about 50 yards away from us, getting into their car.  I can feel my body leading me quickly up the street and toward them but I force myself to stay in the conversation. 

J: I don’t understand, though. What problems do I have? I know I have autism but I was born with that and it’s not a problem. Does he mean because I have autism? Is that the problem he’s talking about?

I wish I could say we got in the car and went out for ice cream and lived happily ever after.  I did explain that some people, even grownups, are too closed minded to take the time to get to know us and embrace each other’s differences. I also shared my feelings that there is no one I know in this world who doesn’t have some sort of special need that is unique to just them, requiring special care, services or understanding. I told him I was proud of him and that he’s right, while autism may be a challenge from time to time, it certainly doesn’t mean he “has problems.”

But then I turned to my friend, asked her to walk to the car with my kids, and I marched up the street and came face to face with the parent — and it wasn’t pretty.

Because if you tell your kid that my kid has problems, you better believe you’ll have a problem.

IMG_7556

The Upside of Autism

People often talk about the difficulties associated with parenting a child with autism. But this post isn’t about that. I want to recognize and celebrate the upside, or at least one teeny tiny part of the upside, of autism. It’s a blessing we parents are given somewhere, somehow — packaged up in a huge gift I like to call “perspective.”

You see… hundreds, if not thousands, of parents in my community got their kids up this morning and fed them breakfast, before heading off to soccer. They braved the chilly winds of the 8am game, juggled multiple kids’ schedules and sat in the hot sun for the afternoon games. They cheered the kids on as they sipped their coffee in their portable chairs, aware that this was just the first in a series of Saturdays they’d hand over to AYSO.

But I’m willing to bet most of those parents took it all for granted.

From afar, my day probably looked very similar to that of these other moms. I, too, woke up earlier than I prefer on a Saturday morning to get one kid to the field 30 minutes before the first game (seriously, 7:30 am?). I whooped from the sidelines and served up an extra dose of encouragement when my 6-year-old suffered a sizable defeat to the other team, appropriately named “The Sharks.” When it was over, we went home to do some chores, give the kids a little down time, and feed them lunch before packing it all back up for the afternoon game.

It was that 1:00 pm game that clearly separated my husband and me from many of the parents at the field. For our 7-year-old, officially diagnosed with autism two years ago, it was the first time he had ever suited up for soccer, and years since we had tried a team sport (what with the t-ball debacle and all).

My nervous energy was palpable. My incessant pre-game pep talk… the way I paced back and forth before the game… I was practically jumping out of my skin with anxiety (and a little excitement) over how it would all go down.

Fortunately, my son’s coach is no stranger to special needs and has empowered us to communicate throughout the game what works for Jacob and how he can help. We were all on the same page… if he gets overwhelmed, a sub will be called in. If he loses steam, he can sit down. We were grateful for the accommodations but I couldn’t help but hope with every ounce of my being we wouldn’t need to use any of them.

Learning a few tricks over the years, we did our best to set Jacob up for success. A little water in his hair to help keep him from becoming overheated (a common trigger) and keeping the focus on one seven-minute period at a time seemed to make things more manageable. Removing myself from the equation, letting his coach (with some help from Jeff) take the lead also proved to be a good decision. Because for the next hour, our little man played — and he played hard. He ran and kicked and ran some more. The glow radiating from the smile on his face rivaled that of the hot sun. He was part of a team… he belonged to something bigger than himself… you couldn’t miss the pride he felt — he carried it in every step, in every kick.

Then he was knocked down.

I thought I heard my husband gasp and hold his breath, only to discover it was actually me. Because where another child might get up, shake it off and keep going, one of the most stressful challenges for us is finding the ability to persevere when faced with a challenge, not letting a small setback become a huge issue.

For a second there, I could feel the earth screech to a halt. It was as if time stood still while our son lied on the grass. Would he recover? Would this be the very thing to sideline him and squash his enthusiasm for the rest of the season?  “Come on, come on, come on, please, please, please, please,” my mind begged while my mouth stayed quiet. Things were going so well, please don’t let this be it.

What felt like an eternity was actually about three seconds. Jacob popped up and was back on his feet in no time. As he recovered, I could see that question in his face, “Should I give up?” I don’t know what happened during his inner conversation, but I know who won — the side that told him to keep on keepin’ on.

Jacob played four seven-minute periods today, only sitting out a couple of times like the rest of the team. While the team took a pretty big beating (just ask a kid with autism to not keep score), seeing my son leap out of his comfort zone and give it all he’s got on the soccer field was a huge win for Jacob, and for our entire family. And you know what, I wouldn’t trade it for the world. Because right along with the struggles,  it’s those typical no-big-deal moments other families often take for granted that feel like huge, tear-inducing, heart-swelling victories for us. And it’s those victories that make life all that much sweeter.

Video

The Story Pirates Make Dreams Come True

Daily Show host Jon Stewart and I have so much in common. He’s a politically-savvy, wealthy TV star who loves The Story Pirates and I… well, maybe we don’t share that much in common. But I am a huge fan of The Story Pirates, who Jon happens to agree are “crazy entertaining.”

In fact, this past weekend, The Story Pirates (actors who perform stories written by children) spoke to my son in a way no one else ever has, by inviting him to write a story to be performed by their actors. I could sit here and gush about how my son’s life has been changed but the video says it all… and then some.

A huge thanks to The Story Pirates for giving this family an afternoon we will never forget.

Autism Speaks! Governor Brown Signs SB 946

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!