Yesterday was a big day for our family. It was also a big day for approximately 10-12,000 other people in Anaheim, especially children, who showed up to a loud, crowded event and celebrated their Autism, in hopes of raising money and awareness for their cause. My son has Autism.
Like any parent of an Autistic child, I (and my husband) knew Collin was different. We always knew. We also knew that the initial diagnosis wasn’t quite right. So, we kept pushing. And, we knew that the second one wasn’t enough, so we kept pushing.
Finally, this one fit. It was like Cinderella putting on the slipper. My boy read a description about Autism, and kept repeating, “Mommy, that’s me!” and saying, “there’s others like me! I’m not weird!?” It was simultaneously heartbreaking, and a giant relief, to see him feel like he had felt so isolated, and now has a sense of identity.
So, when he saw an event that he could be a part of, the Autism Speaks Walk, where he could see other Autistic children, in a large group, enjoying the kinds of things that he doesn’t enjoy (crowds, music, socializing), he had to see that it was possible. He had to just be there. It was his idea, and we agreed to support him in every way possible.
Then, I got sicker than I’ve been since my first surgery. I pushed as hard as I could to help him fund-raise, anyway. I designed his team t-shirt, to his exact specifications, from the corner of the couch. I helped him walk the neighborhood to raise funds, but it took days, because I was too sick to walk. We did a lot of fundraising online. I found him a corporate sponsor, but I was too sick to follow up on it.
Then, the risk of me not even being able to go to the event became very real. This last flare has lasted so long, it was obvious that I was not going to be able to walk, and I’d need a wheelchair. This was the line that I’d promised myself I’d never cross. Still, he begged and pleaded for me to be there, simply be there.
You see, I’m his “lighthouse.” That’s our family’s code-word for when he’s over-stimulated. A lighthouse is a shelter in a stormy sea. When he needs an escape at a party, or at any environment that he needs out of, now, he whispers “lighthouse,” to me (or Daddy), and we remove him. Usually, “lighthouse” means coming to mommy and daddy’s room, closing the door, and being away from noise for as long as he needs to be.
It means cuddles and quiet. He didn’t want to be at a scary, new, loud place without his lighthouse.
So, I agreed to bring the chair, if I was well enough to go. I probably wasn’t well enough to go, but I went anyway. I couldn’t bear not to be there. It definitely pushed my limits, and now that it’s over 24 hours later, and I’ve slept almost all of those hours, I can say it was worth it.
Furthermore, the chair was worth it. That chair was our lighthouse. He was so excited to help push it that he forgot the noise and commotion, at first. Then, when it got to be too much, he climbed into it with me, and stayed in my lap. When he felt it was too much, even then, I’d feel my baby’s body snuggle against my chest, and his little voice whisper in my ear, “I love you…I just love you.” That chair, the one that I thought was taking something from me, it gave those moments to me.
Thank you, wheelchair.