Grateful

A week ago, I had the opportunity to participate in a relay race. Prior to raceday, I knew none of the runners and had met them through a message board. They were looking for runners to fill up their team. Having wanted to run Ragnar sometime, I jumped in even though I had a 50k scheduled for a week after. I volunteered for the longest legs knowing it wouldn't be very difficult to run 22 miles over a couple days. I had run 50 a couple times in 8 hours. Then a team member dropped a few days before the race. I volunteered to run extra legs and ended up running 36 miles. It was loads of fun. Anyway, what I didn't know about this team is that most of them (all but three of us) were either ASL interpreters or users. What a wonderful experience it was to get to know these people with huge hearts despite what some would consider a limitation. Having worked a little with Conlan on a few signs, how I wished I had learned more. After a couple days of being surrounded by constant hand motions, I feel that I started to pick up on the gist of what they were saying. I hope that in the coming year I can learn more sign language and teach more to Conlan so that I can really get to know my fellow runners.

Conlan is great at signing for "more". Other words such as "please", "thank you", "want", "finished", "potty", etc take prompting from us. At times it feels he does "more" for everything and doesn't quite understand the difference and meaning attached to the signs or to words in general. But he has shown lots of progress, just in the last few months. The other day he wanted to go outside. He let me know this with a lot of whining and by bringing me to the door and pointing to the lock. (Since I moved in to my current place, he has never gone out the door by himself. He can open it just fine, even unlock the deadbolt. But he has learned limits and stays inside unless he is with us.) So I told him that if he wanted to go outside, he would first have to find his shoes, put them on, and come back to the door. Then we'd go outside. To my surprise, he did just that; he found his shoes, put them on, and came back to the door! It's amazing what he'll do if he's motivated. We went outside and just walked around the complex for a good half hour.

At the annual IEP meeting, one of his goals that we discussed was to be able to accomplish two tasks given at the same time. Examples include "throw away your paper and come back to your seat", "take off your harness and hang up your backpack", etc. He struggles with multiple tasks. So I took delight when he found his shoes, put them on, and came back to the door.

As I was running with a teammate, we discussed Conlan and his difficulty to communicate. He's struggled with the Picture Exchange Communication System (PECS) and with sign language. She then related to me an even more worrisome ailment that some children are born with. Could you imagine not being able to feel pain?  Some children are born with what's called congenital insensitivity to pain.  They can't feel pain and so can't communicate their injuries to parents. The next time Conlan is whining or crying, I'll smile to myself and be grateful he can communicate his pain.

Anyway, Ragnar was a great experience. I'll treasure it always, especially the part about Conlan throwing his shoes into the harbor at the finish line!

 

 

 

 

Potty training

Ever since Conlan was about 2 years old, we've tried potty-training him. Success varied. Sometimes he would release in the morning after setting him on the toilet. Sometimes he seemed scared of the toilet and bathroom. Sometimes (forgive the pun), he just didn't give a crap. Being used to training dogs in about two weeks, I think we gave up for the most part.
The local school district hosts a monthly ABA workshop for parents. Last Fall, I was able to go to a couple. One was on potty-training. Having never successfully trained a human child, much less an autistic one, I learned a lot but wasn't around Conlan enough to implement some of the ideas and suggestions. So we continued down the same path.
Four years later, he is still in diapers. Sometimes he'll sit on the toilet. Sometimes he refuses.
While he was going to summer school, he seemed to make a lot of progress. He started changing his own diaper! He'd go off all by himself and return with a fresh diaper, sometimes on backwards. Independent is this boy! After that, we thought he was ready. So, this past Saturday, we bought some training underwear and stopped using diapers.
It has been very difficult. To get things going, we decided to put him on the toilet every half hour. It went well, except he would wait until after being on the toilet to let it go. Sometimes mere seconds after getting the underwear and pants back on. Argh! He quickly learned the process: take off pants, underwear, sit on toilet for a while, get off, flush toilet, wash hands, dry hands, put on underwear, pants, socks and shoes and go play. Now when we just take him to the bathroom, it's almost automatic with a lot less prompting. He also seems to be sitting better, and not just on the toilet but at the kitchen table, in the car, at school, etc. So although we haven't had much success, he's learned a lot and made lots of progress in other areas.
And it's only day 4. Patience, Evan. Patience. I need to realize that he has been wearing diapers for more than six years. He's used to taking care of business on the go whenever and wherever he needs to. Why hike up the stairs to the bathroom and go through all the hassle? The alternative is so convenient! He's used to the wet feeling against his skin. It'll take some time, patience, consistency, and courage from all of us.

Fire station

You know how most little boys get super excited when they see the fire truck passing by with the sirens blaring or when passing the firestation? Not so with Conlan. A friend had his birthday party at a local firestation a couple weeks ago. The firemen were fantastic. They gave us a tour and even let all the kids sit in the firetruck with the sirens blaring. It was lots of fun. At the end of the tour, the kids put on their plastic firemen hats and posed for a picture with fireman Steve. Conlan didn't seem very interested in the whole process, I was barely able to get a picture of him in the firetruck before he climbed down. His brother, on the other hand, had a blast and couldn't wait to get his hat on!

Progress?

Conlan has been living with Heather and me for the past three weeks so he can go to summer school. It has been a great experience for him and for us as well. The first few days were tough as he adjusted to living in a different place and to a different schedule. Drastic changes like that are always difficult. Every day, his teacher sends a little summary on how the day went. Most of the days lately have been, "silly today". There hasn't been any messages about him escaping and running off which was a common occurrence last year in Kindergarten. That's a relief! Every morning, he gets super excited when he sees the bus coming. The other day, he got on before I could even start to get his harness on.

Running

I recently completed my first two 50-mile races, a month apart from each other. Both were lots of fun and very different from each other. The main reason I ran the second one is because it is a certified qualifier race for the Western States 100 Edurance Run. Well, I qualified with a time an hour slower than the first race. I wonder how I would have placed if I had trained more during the month between the races, and if the weather were cooler and less humid. All this running gives me lots of time to think and ponder. I think about life, what I want to do, how to be a better father and husband, how to challenge myself and grow in other areas of life. Running for eight hours or more gives a LOT of time to think. It gives time to connect with the beauty of the Earth, to reach out to other fellow human beings, to witness wildlife in their native environments, to appreciate things as simple as water and bread and of course, my family. Heather was there both times to cheer me on. The second race was local to the area. It was close enough that Heather and Hilary surprised me by bringing the kids to the finish line. What a joy it was to see the kids there with Heather!

So what does running have to do with Conlan and autism? LOTS! For a long time, I've known I am different, not quite normal. But I couldn't quite put my finger on what was different about me. In high school, I enjoyed running on the cross country team. It was a place I could relate to others, it was a main avenue of socialization. I still keep in contact with friends made through cross country. My favorite runs were on trails in the mountains near my home, or through the golf course. I ran with friends, talked with them. But I also was able to think about things. I remember reviewing notes in my head from my European and US History classes or from Biology and Chemistry and even solving some difficult Calculus problems. I remember "dreaming" about some beautiful, intelligent young women from my classes. You know, classic teenager stuff. Anyway, back to topic, when Hilary and I had Conlan diagnosed and found out he was autistic, we soon realized that I displayed a lot of the same symptoms. It started to make sense. We read books and watched movies such as Temple Grandin, My Name is Khan. We love Sheldon from "The Big Bang Theory". Just as the cattle shute calmed Temple Grandin, running gives me an opportunity to shut everything else off, to focus and get calm. Maybe that's why I enjoy running on trails more - there's no cars or other distractions. It's just me, the trail, and nature. I can focus better. There's less sensory input to tune out.

And now, how does all of this relate to Conlan? He's a natural runner. He loves to run, especially if he can get away from his parents before they even know he's gone. I've noticed that he rarely stops moving. Instead of walking down the sidewalk, he skips. Instead of sitting in his seat to eat, he wanders around the room grabbing a bite to eat every couple minutes. (We're working on helping him to sit down through a meal). If we'd let him, he'd move around the car on car rides, but instead he stays busy by watching scenery and objects fly by. He really likes to be chased (at Church, school or wherever). The other night, he was in an empty bedroom and ran in circles for a good 20 minutes. All the while, his face had the biggest smile ever. And he was laughing so hard. I wonder if he'll grow to enjoy distance running as much as I have. He definitely has plenty of energy and natural skill to do well. His PE teacher even commented how fit he is cardiovascularly and how strong his legs are (he also loves jumping in place which can be a problem at hotels when we're not on the ground floor ;) ). I know he enjoys running around and hope it will be helpful for him just as it has been for me.

Conlan jumping on the metro

Basketball

Car Rides, Squirrel Chasing, and Soccer

I've mentioned a few times how Conlan really likes car rides. He still does. It's very calming for him. He likes watching out the window. He likes the lights, especially Christmas lights during Winter. He likes watching the cars, trees, buildings and signs go by. He has two car seats, one for his mom's van and one for my car. The one in my car is just a booster seat. We bought it a couple years ago when he grew out of his car seat. When we bought it, he wouldn't stay in it, taking his seat belt off or slipping out. So we bought a bigger car seat that his mom now has. That was the solution then, just to remove the option/ability for him to escape his seat belt. The first few times since reusing the booster seat, I let it get to me whenever he would either unbuckle or shimmy his way out of the seat belt and yelled at him to get back in his seat. Not only did I feel awful for "losing it", the results of said action were mixed. Sometimes he'd sit back down. Most times though, he'd just ignore me. For the sake of his safety, something had to change: either buy a new seat with a 3-point harness or change my own approach. With finances being tight and not wanting to waste a perfectly good booster seat, I decided on the second option. And besides, he has learned to unbuckle the upper strap on his car seat that goes across his chest. So a new car seat wouldn't have lasted very long anyway - it's only a matter of time until he learns how to undo the lower buckle. So to change my own approach, instead of yelling whenever he unbuckled or climbed out of the seat belt, I stopped the car. I pulled over every time, buckled him back in, and calmly explained to him why (for his safety, that I love him, etc.) he needed to stay in his seat with the seat belt on. I've even turned on the hazard lights a few times and sat blocking traffic while I buckled him up. Sure, a few people have honked, but that didn't bother me. After a few weeks of consistent and calm enforcing of the rules, he doesn't try to get out as much. Over the past week, he's kept his seat belt on the whole time. Most of the trips are short: between my place and his mom's or to my girlfriend's, both about a half hour. But it's progress! I wonder how he would do on a long trip... Also on car rides, he loves playing with the windows. Window locks are great. But if I leave the window up too high, he gets out of his seat. He likes feeling the wind as it flows over his hand. That was so fun as a kid, I can really relate! Sometimes I wish I knew what was going through Conlan's mind. When he sees a squirrel, he follows it. If the squirrels would let him, I bet that he'd do it all day! Does he want to catch one and play with it? Is it the chase that intrigues him? Is it watching the squirrel move about? How the squirrel efortlessly hops, fluidly moves his tail, or grips the trees and climbs with such ease? Who knows. I'm just glad Conlan enjoys it. Who would've thought that moving across country from a desert of lizards and night critters to a forest of squirrels and other critters would provide such a small but meaningful benefit! Last weekend, Conlan had a blast watching, interfering, chasing, etc. the neighbors as they played soccer. Even though Conlan can't form words in Spanish or English, language isn't a barrier. Odd. It was so nice and heart-warming when one guy (one of a couple young adults) set the ball down in front of Conlan and told him in broken English that he could kick the ball. They all paused as they stopped their game for him. Conlan just picked up the ball and gave it to him as if to say, "Kick it, I like watching you do it." A few times they tried. I watched both with amusement and a deep sense of true happiness and joy.