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.

Lazer Tag

Last night we went with the Youth Group to Lazer tag. It was a lot of fun, Jax really enjoyed "playing". He generally just wandered around the arena, shooting at random things, and enjoyed the sensory blast that used to overwhelm him. I am happy that he had a good time, but it's a little bittersweet. It's almost painful to watch him; so unaware of the point of the game. I know that I should be content with his joy, but I'm just not. It made his autism so evident, so in my face that at times I just wanted to cry. One step forward, two steps back, that's how it kinda goes isn't it?

He did have a lot of fun, and enjoyed himself. It didn't faze him one bit, and in a way it's a blessing that he doesn't know what he doesn't know. I just wish it didn't break my heart to watch it happen.

And, once again, the kids he's grown up with stepped up and had his back. We went to IHOP for "breakfast" afterward. The kids were grouping up, getting tables. When Jax became aware of what was happening he asked for one of his friends (more than one time--in his own way by repeating his name). This sweet, kind kid made room for us in his group like it was no big deal. He may never know what a big deal it is to me.

Little Things

I picked up the boys after school today and Jackson couldn't wait to get into his bookbag. He quickly retrieved a candy cane and began to devour it. I asked him, "Jackson who gave you that candy cane?" "Mrs. Fulk" was his quick (and no doubt accurate response). Little things like that inflate my hope. He's meaningfully answering questions about what happened at school which for him is a big step!

Tonight, he also attended the basketball end of season "party". He has been attending some practices and the home games for the 6th grade team. This has been with the help of Micheal, an incredible teenager who supports him and shoots hoops with him. Tonight, he and Micheal walked into the building for the team celebration, and I watched my anxious son be soothed by this too cool young man; so naturally and effortlessly. Within a few minutes, I texted Micheal to be sure all was well--his simple response, "Yep, he's eating pizza and ice cream". I was moved to tears as I saw his gentle and simple interactions with my son. I thanked God (& Michaels mother) for this gift, this little thing that means so much to me. I wonder again about the place God has put me in and am ever so thankful for it.

12+ Days of Christmas

This year, not unlike years in the past, Jackson has selected an obscure set of stuffed animals for Christmas (remember the Pirate Big Bird post?). This time, its a set of Winnie the Pooh characters he found on Ebay. Winnie, Piglet, Tigger and Eeyore are decked out in rain gear and are very anxious to be added to Jackson's ridiculous collection of stuffed animals.

Jack is having a tough time with the waiting. Time is pretty abstract for him and when he gets this anxious the calendar means little. He had trouble falling asleep last night and was up early this morning asking anxiously, "Mommy, get up. Presents?" Well....we have another 2 weeks until Santa comes; and it's so hard for him to comprehend. "Be good" becomes vague and difficult to attain for him.

This afternoon, he looked again at the calendar (I stamped a green Christmas tree on the 25th) and began his litany: "Santa bring you raincoat pooh, raincoat tigger, raincoat piglet and raincoat eeyore". I honestly ignored him and hoped he would somehow, someway be distracted from this obsession. (He was eventually--giving up to watch YouTube). Later, as I'm at the fridge getting out the chicken for dinner I see it: All over the month of December, in intentionally formed letters:
RkOP Kpa rkOTcKrrkpoo

Translation (in case you need it):
raincoat pooh
raincoat tigger

I got lost somewhere in the middle there, but am confident of the message he was trying to convey. And what a wonder of Christmas it is for this child to be conveying a message in print; so intently, so purposefully. It's gift enough for me to tolerate the next two weeks of obsessing about when Santa is coming and exactly what Santa is expected to bring. So, when I'm frustrated beyond words, I'm going to look at that calendar and cherish the message there.

For those of you who might be wondering, yes, Santa has 3 of the 4 characters in hand, and we're confident the last one will arrive well ahead of the big day.