"I can breathe in a small town"

There is something magic about small towns. I grew up in small town, Indiana. When I was about 15 John Cougar sang "Small Town" on the radio. I loved the song, but hated living in a small town and just couldn't wait to get outta dodge. Life has a funny way of coming full circle for me. Here I am in a small town; marveling at the wonder of small town ways.

Jackson is "playing" baseball again this spring. He's officially a "bat boy", but he rarely gets a bat. He loves sitting in the dugout with his team, eating sunflower seeds and waiting for the 4th inning so he can play on the playground. He faithfully returns to the diamond to say "good game" and listen to the team meeting at the end of the game. This spring he's even interested in batting and has hit a couple of times during batting practice. There is a great joy for me in watching him interact with the other boys. We get something back that autism once stole away.

Earlier this spring, the mom of girl with autism asked me about the possibility of her being a "bat girl". I was thrilled last week to see her in the dugout in her uniform--so proud--with a smile that would light up the night. I ran into her mom, proudly toting her camera taking pictures. Later I saw her coach at the park and stopped him to say thanks. Little things like being a part of a team mean so much. This coach said he was happy to have her, "it's not a big deal." Oh, but it is a big deal. Opportunities like this aren't always available to kids like mine, making me all the more grateful when there is one.

I bet your wondering what all of this has to do with Mellencamps' "Small Town"...
There is magic in this small town. It's a place where kids like Jackson are included and embraced. It's a place where moms like me have the chance to see special kids do "normal" things. It's a place where everybody knows everybody else, where you know all the parents are looking after all the kids. It's a place where we cheer for the team and take walks to get ice cream. It's a place God put me for a reason...though I am certain my 15 year old self would think I am so not cool.

Vacation Memories

Spring break took us to Treasure Island, Florida outside Tampa. We had gorgeous weather, a beach that went on for miles, two heated pools and a hot tub. The perfect equation for relaxation in our family!

Jackson had a fabulous time, as the water is therapeutic for him; though he was a bit anxious, needing to know what was next and to be reassured often. The trip started in Indy at the airport, where Jax couldn't wait to get on the plane. He isn't the most patient kid in the world, but once we got on the plane, he calmed down significantly. Jackson loves to fly--he takes in the whole experience. This flight was especially memorable as about an hour into the flight, he turned to me and said, "Isn't flying wonderful mom". At that moment, I knew the money we spent on the whole vacation was worth it. Yes, flying is wonderful and even more so, when my son is able to give voice to those words!

The boys all enjoyed the ocean waves and each visit to the beach Jax had to write our names in the sand...
Here are a few photos from our trip:




The experience of vacation builds schema for Jax. Today, as I'm putting away laundry and cleaning up around the house, I notice him in the toy room with the vintage fisher price little people plane, taxi and Sesame Street characters. First Bert and Ernie rode in the taxi to the plane, climbed the stairs and "get on the plane". Then Big Bird, Snuffy, and Grover joined them. When I asked him where they were going he said "to the hotel". The autism gods took a hit today: my son is playing pretend, using his schema to play with little people. Triumph...

Confirmation

Jax is going through confirmation classes at church. It's definitely a stretch for him. Faith is so abstract and he is so concrete; it's an act of faith just pushing him to participate in class. I know that he is "learning" and growing by participating, and I am once again humbled and grateful for this amazing place we live. A place where a friend from church didn't hesitate when he was asked to be Jackson's mentor and walk the journey with him; and where his peers again support and encourage him. A few weeks ago, we went to Noblesville for a confirmation rally, Jax surprised us with his endurance and ability to go with the flow that day. Absolutely, his peers make a difference for him, and he really wants to be with them, do what they do...still something that amazes me given the autism.

As part of the course last week, the kids were each given $5 and challenged to use it to support a mission...mission here was broadly defined: an animal shelter, food bank, anything that would be considered supporting God's work in the world. Today, the kids had to report on how they chose to spend the $5 designated for missions. I was so proud of the ideas they shared: a few bought bibles to share on the mission trip coming up on spring break, others supported a local initiative for young moms. Jax donated his money toward another girl in the group who is walking next weekend in DC to raise funds for epilepsy. One of the kids in the group gave his $5 to Jackson "To buy an educational toy or game or something". Talk about touching my heart. God has a purpose and a plan and so much to teach all of us through Jax. I am doing my best to support that plan; and trying to enjoy the ride...

Autism Experts

I just returned from a two day workshop in Bloomington to finish my "autism team training" for work. Being a member of the team required 6 days of training in Bloomington, and last spring when my boss asked me to be a part of it, I couldn't say no. So, I got to spend several days in B-town, "learning" more about autism [as if living with it 24-7 isn't enough].

During this training I listened to people who have made a conscious choice to learn more about autism; to spend time with families struggling to make sense of the disease. Honestly, these are some amazing professionals, who got into this long before it was an "epidemic" with motives that are pure and heartwarming. They live and breathe autism, and don't have too. They have come to love, cherish and celebrate the people who are affected by this mysterious [and frustrating] disability. They are my heroes for so many reasons.

First, they choose to live autism. Autism is so many [ugly] things and I can honestly say, I would never choose to expose myself to it. They are fighting the good fight for all of us not given a choice; and they do it with passion. I am humbled by it.

Next, they validate me (probably this should be first). I listened to them speak passionately and they make me feel like I'm doing the right things for my son. My mantra has been "it's all about quality of life". The points they made reiterate that importance. These experts emphasized the importance of social skills and relationships. They urge parents to consider what life will look like for kids 10, 20 years down the road. I am SO there...so there.

Also, these experts say, "there is no magic cure; no simple solution". Amen to that. It may take several therapies, a combination of approaches, a multi-faceted solution. And even then, your kid may still suffer from the demons. Living and "dealing"with autism requires outside the box thinking; it's like running a marathon uphill...

Finally, these experts find a way to appreciate what makes these kids just like any other kid (and what makes them drastically different). They find ways to connect and laugh with kids. They find ways to solve problems and create solutions for families. They give me hope.

And sometimes, hope is all I have left....

Dance!

Last Friday night Jax attended his first school dance; true to his 12 year old form, he went grudgingly (though most boys aren't interested in dancing and Jax just wasn't interested in returning to the school for anything!) With a bribe and a prayer, we headed off to the school. Initially, he was just happy to get his treat from the concession stand, then he wandered a bit, taking it all in. He sat down at a table in the commons to eat his candy and I managed to persuade him to check out the music coming from the gym...

Once he spotted the strobe lights, he was off. He had such a good time--watching those lights, running back and forth in the gym. At times, he looked like any other kid in there: he joined in the "Cha-Cha shuffle" after hanging back to see what the song was all about, and when he took a break from his "dancing" he sat on a mat at the other end of the gym (grown up enough to not want to just hang out with mom)!

There were also times he was so obviously different that my heart hurt. I've learned to come to terms with that; he was having a blast and I thanked God for another piece of happiness, another "rite of passage" he can enjoy. I also thanked God for the girls who engaged him, tried to get him to dance with them and for the kids who let him jump around in the middle of them.

One Junior High dance conquered; more to come! [I'm ever so grateful to his social studies teacher for forwarding me these photos of him!]

Autism Presentation

Last month I had the privilege of presenting at a national conference for educators on two of the topics I'm most passionate about: Autism and Early Literacy. I don't mind public speaking and talking about our journey sometimes gives meaning to the madness. Making the speech forced me to think through some of our biggest challenges with Jackson, but also helped me to recognize some of his greatest accomplishments. I reflected on what autism has taken and the perspective I have gained in its wake. I never imagined that this would be the course his life would take, and still ponder how the direction may shift and change over time. There is one thing for certain, we'll continue to stretch him to be his best and support him as he tries new things...

Elephants, Tigers & camels?

Seven years ago, I was 8 months pregnant with Callahan, and we decided to take Jax to the circus with another family. It was probably one of my lowest points in parenthood. Here was this precious 5 year old boy who literally, just could not filter all the sensory input the show offered. He did his best, and he so obviously wanted to be there, but he just was not able to assimilate all the sights and sounds of the circus. He would leave the arena and watch from the hallway, peeking out over the steps into the lights and sounds, clearly distraught. He was torn between wanting to see the show, but knowing it was more than he could handle. We ended up leaving; me carrying an upset tearful boy away from the coliseum, fighting back tears myself. It was a heartbreaking painful reminder of just how not "normal" our family was.

Fast forward, 6 years...Jax goes to the circus with his 5th grade class, (dad in tow)and is able to filter and enjoy all the chaos that a circus has to offer. We were pleased beyond words that, finally, our son could enjoy a childhood treasure: the circus.

Armed with that experience under our belts, we bought tickets to the circus and went as a family last night. Jax seemed a bit confused at first, referencing going with 'the kids', but quickly adapted to a "family fun night". Once we got our seats, Jax began a litany "elephants, tigers, and camels". I wondered where he got the idea that there would be camels at the circus. He repeated his litany at least twenty times through out the show, he had to be sure he wouldn't miss anything. We got our popcorn and overpriced dippin' dots and souvenirs and we sat together as a family and marveled at the circus. Quietly, inside, I marveled at my son. A boy who doesn't realize all that he has to work against; who doesn't comprehend the why's and how's of the world. A boy who has courage to keep trying and stretching himself to new experiences.

We got a piece of that figurative puzzle back last night. We were able to enjoy the circus as a family in a "normal" way we at one time thought never possible.