Caution! Autism on Board.

A few months ago Jesse’s dad, Dalton, called us up and invited us down to visit in Texas. He and his wife, Patti, rented a beach house just south of Galveston and we were invited to join them for a week of fun, sun and as much relaxation as Kamp would allow. We thought about hopping a flight, but figured that, although it would have been awesome to be on “Good Morning America” we’d have to drive rather than take Kamp on an airplane. (We would have totally gotten kicked of the airplane.)

We packed up the car, set Kamp up in his little corner all snug and tight and began our journey. Twenty-one straight hours to San Antonio, Texas. We felt like it was be better to get the drive over in one shot – the bulk of which could be done while the kids were asleep. In theory, it seemed like a good idea. Seemed that way.

Kamp did well through the drive down. He had his movies. His favorite snacks. His odd assortment of toys.He was happy. Content. Although he didn’t really sleep like we had hoped, there were no major meltdowns; just the normal screams and thuds we’d become accustomed to.

When we finally got to San Antonio, Kamp had a great time! We saw a few family friends (To protect their identities, we’ll call them Brock and um…Tara.) I protect their identities because Kamp stripped down (naked) and went for a dip in their pool. Before he got out, he decided to leave a little something for them to remember him by (he pooped in the pool).

At another friend’s home (Let’s call ’em Ben…and Lisa), he walked in, helped himself to a slice of pizza in the kitchen and polished off a few empties on his way out – all without saying a word. We got to eat the BEST Mexican food in the world, Teka Molino, and set off for a few days of sun, Gulf, and BBQ – a lot of BBQ.

We spent a few great days with family, and Kamp never wanted to get out of the water. That boy is obsessed with water. Hadley got to spend some quality time with her Grandparents, and Max’s fear of water was alive and well – still is.

The Return Trip

To help me describe our journey home, I refer to the classic film, “What About Bob.” When Bill Murray’s character, Bob, goes on a long bus ride and discovers that his beloved gold fish, Gil, has had a melt down. Watch the movie and you’ll know what I’m talking about.

Kamp had been out of his routine for over a week. He had been in new places (e.g. the beach, new houses and the BIGGEST toilet ever), and he had been holding it in for as long as he could. We endured a few car tantrums, but nothing could have prepared us for the mother of all melt downs we endured when we decided to pull over and grab some food at the Wendys in Moab, Utah.

It was very busy, we were all dirty and grunge from our long drive, and when we got in the back of a very slow moving line, Kamp  assumed his normal position on top of Jesse’s shoulders. He was hungry, tired and at that moment decided to let a handful of unsuspecting lunch patrons know how he felt about his life.

Out of nowhere he began screaming and trying to get down from Jesse’s shoulders. He hit Jesse and laid on the ground screaming refusing to get up (it literally sounded as though he was being beaten in the middle of Wendy’s). He kept kicking, hitting, and slapping at his Dad all while screaming. Jesse finally picked him up and dragged him outside.

Do you know what you do when that happens? Nothing. You get your food, avoid eye contact, wipe the sweat off your brow (from the anxiety surge), hold your head as high as you can, and remind yourself over and over that you don’t care what those people think all while feeling like if someone said something, you would explode into tiny little pieces. Needless to say, that day, the folks at Wendy’s got lunch and a “show.”  That one was on the house!

The Outsiders

People want to be kind and compassionate; I truly believe that. However, actually putting kindness and compassion into action is a lot harder than just thinking about it. The truth is, when you have a child like Kamp, there are times when you’re simply not welcome, and treated like an outsider.

We don’t take Kamp to the movies because he screams and can be very loud. We avoid busy parks because he’ll see something he wants (toys or food) and walk up to complete strangers and take it. We avoid the store – even people’s homes. Not because someone has said we’re not welcome, but unlike Kamp, Jesse and I can pick up on social cues and  know certain people – although they would never say – just don’t want him around.

It’s really an uncomfortable feeling when you know your kid’s not welcome somewhere. And although Jesse and I remind each other that we don’t care – it’s hard to not take it personal.

Here is the latest on the list of places Kamp is no longer welcome:

Anyone who knows me, knows I love to work out. It is the ONE thing I do every day that’s just for me. For an hour and a half I get to put on my headphones, rock out to my favorite tunes and make my body feel better physically – especially when I’m so often drained emotionally.

From the beginning, I have always tried to avoid taking Kamp to the gym daycare. I know he’s difficult, so when I don’t have to take him, I don’t have to worry about him.  During the summer however, I didn’t have much of a choice.

I took precautions. I took him at night when it wasn’t as busy, and I explained to the employees about his specific disabilities. (i.e. what his triggers are, and how to deal with them). And I figured it was only for an hour and a half –  should’t be a big deal right? WRONG!

Halfway into the summer, I received a phone call from the supervisor at the daycare. She told me the ladies who worked during the times I brought Kamp did not want to deal with his disability. She said, “they’re not trained to deal with kids like Kamp.”

I don’t have to tell you that I was VERY emotional about it!  The gym was suppose to be my safety net. It was what I had been relying on to keep my sanity! I “hurried” off the phone (I hung up on her) and burst into tears.

I called her back later and did my best to keep my wits about me while I explained a little thing called the Americans With Disabilities Act, and how they couldn’t refuse my son because of his disability. She back peddled a bit and said to, “…just bring him when I am here.” But at that point, I knew my Kampy wasn’t welcome, and what kind of mother would I be if I took my special boy back for people to treat him poorly because they wanted their job to be easy.

I haven’t taken Kamp back, and now that he is back in school, I’ve returned to the daycare with Max and have had no issues. However, I do feel weird. I hate knowing that someone rejected my child. It’s hard not to feel like a pariah. It puts a sick feeling in my stomach; I feel rejected, too.

Sometimes we (as a family) feel like we are outsiders; tolerated but not really welcome. It’s lonely and frustrating. In some of my weakest moments I have wished that things were different, but I love Kamp and everything that comes with it. So, I put on my big-girl pants and remember that my little family is the most important thing in my life, and if your not with us then it’s your loss! But, if you are with us then you are in for some crazy-awesome, mind-blowing adventures. And I never said there wouldn’t be poop involved 😉

Why I Walk for Autism

I have tried several times to sit down and write a few blog posts, but the things I seem to want to talk about are a little difficult for me and I have continued to put them off.

So – to get the ball rolling I have decided to talk about our most recent adventure, the Walk Now for Autism Speaks walk in Salt Lake City this last weekend. It (Walk Now) is a fundraiser to help raise money for Autism Speaks and research to uncover the mysteries of autism.

I really want to support research. I am determined to understand how my son who was pronounced healthy at 2:02 a.m. on August 7, 2006, who loved to snuggle with me, and smiled every time I sang him a lullaby, began to fade away. I realize uncovering the truth won’t change anything, but maybe understanding will give me some comfort.

That’s why I decided to start supporting this worthy cause, and in turn, began harassing all of my friends and family every year. But even more than the fundraising, the Walk is a highlight of my year. We aren’t able to do very many things with Kamp – he’s just not accepted in very many places. But once a year, we can take him to an autism friendly event that’s just for him.

The Walk is a place where every parent understands why he refuses to wait in line and will not get out of the bouncy house. He can scream, cover his ears (because it’s too loud) and we won’t get dirty looks. Instead, we get smiles and looks of compassion from people who know what it’s like. Its very uplifting, and Kamp has a blast.

This year we decided to do t-shirts and now Kamping With Autism has a logo! We picked his favorite color, lime green, and we looked good! It was a wonderful day that celebrates everything autism. A big thanks to family and friends who took time out to come to the walk, and a special thank you to everyone who was able to donate to this VERY worthy – and important – cause.