Snow days

School was closed on Tuesday because the forecast said it was supposed to snow a lot. It did snow quite a bit, but nowhere near what would have canceled school where I grew up. Then, of course, the next day was also canceled so that the roads could get cleared. The school district canceled for a third day, for reasons undisclosed. I think the temperature was too low, about 5 degrees at 6 AM. Thankfully, work was also closed on Tuesday, and on Wednesday, I could telecommute or take leave. Thursday, I wasn't feeling well so took a sick day. Three days off of school for just 4-6 inches of snow! It's ridiculous to me. Conlan hasn't had a full week of school since before Christmas break. And now, instead of getting President's Day off of school, they have to make it up and go to school that day. I hope they don't cancel any more days since more will have to be made up after school gets out in June.

Anyway, Tuesday evening, we finally ventured out into the snow. I'm so glad we got Conlan those snow boots a couple months ago. At first he protested the extra layer of clothing. We even had to hold his hands while we got suited up so he wouldn't strip down. Finally outside, we had lots of fun making snow angels, throwing snow at each other, and making fresh tracks. Hardly anyone had ventured out all day. We made our way over to the park. It's fun sliding down a slide full of snow! Shortly after getting to the park, a girl, her mom, and their dog came to join in the fun. We made some more snow angels, got to know them and had more fun. Conlan squealed at the sight of the dog. He kept putting himself between the owner and the dog so that he'd get all tangled up, squealing and laughing the whole time. This kid needs a dog!

All I Want for Christmas is an EEG?

About a month ago, Conlan lost his first tooth. Well, not exactly, he lost his first tooth without hitting his head on the bathtub. A couple weeks later he lost another. Both times he was very calm and "asked" us to take out his tooth. And just in time for Christmas!

Christmas for Conlan has always been a little different. He doesn't quite get that there are presents for him beneath the wrapping paper. Or maybe he doesn't understand gifts and possession. He is so used to playing with whatever is available. He doesn't seem to have any wishes. He's content to bounce around, watch a little of "Signing Time", or play with things as simple as a cardboard box. Much to our annoyance, he could throw an empty 2-liter bottle onto the hardwood floor for hours squealing with glee the whole time.

So what do you get an autistic 6 year old? His two front teeth! We got some stuff mainly from the dollar store. We also got him an alphabet puzzle floor mat and a tactile spiky ball. He loves puzzles and always plays with the floor mats at other people's houses. I think his favorite toy is the helicopter blade thingy that is spun off of a helical-shaped stick. The blades quickly ascend to the ceiling when purged off of the stick and even glow in the dark. He loved unrolling the Chinese yo-yo's too.

His brother had a blast opening most of the toys, even Conlan's. The video below shows his reaction at first seeing what Santa had brought.





Sadly, all the fun and games quickly came to an end the next morning. He had an appointment with the neurologist to get a portable EEG attached to his head. It was quite an experience for all of us. The technician did an amazing job attaching all the electrodes and wrapping his head so he wouldn't tear it off. A few weeks from now, we get to visit the neurologist again to look at the data and see if they find out anything. I sure hope it was worth the sleepless night as we monitored him both to make sure it stayed attached and to record any mini seizures (none noticed) or other anomalous activity. He was very happy to get it off the next morning and even more excited to be treated with pancakes from Denny's for tolerating the bandage for almost 24 hours. Good for you Conlan!

Sick

The poor guy has been sick for a few days. The school called on Thursday saying he had a slight temperature. So we let him go to bed early and kept him home on Friday. He slept most of the following few days and nights. It's so different for him to be sleeping so much. He never takes a nap! Then on Saturday, he threw up a couple times because he wouldn't cough and ate very little. Monday were declared snow days by both my work and his school. This helped him (and us) get more rest. Since he wasn't feeling very well, he got lazy. He stopped using the bathroom and wet his bed almost every night. He even wet his pants a couple times during the day. He was doing so well with his potty training. He never needed us to take him to the bathroom unless we were in public. He did everything on his own and only needed help to clean up the messy ones. So we're back to closely monitoring his bathroom breaks and their frequency. We really hope that once he gets feeling better, he'll get back to independently taking care of business.
He was so tired that he fell asleep at the bottom of the stairs.
After a couple days of being stuck inside and seeing the snow fall all morning, he just begged to go outside. And he had lots of fun. Since then, he loves walking on the crisp snow, crunching it much like he likes the sound of the leaves underfoot.

Communication

Conlan is still nonvocal and struggles with using PECS and sign language. BUT he is very vocal and does communicate.  A friend sent me the picture below, and it reminded me of Conlan. I am very grateful that Conlan likes hugs and kisses. He doesn't give them himself very often, but when he does, I cherish them.

Just last night after saying prayers and singing to him, he started giggling, came towards me and kissed me on my lips. His kisses are far from normal; he basically touches his wide-open mouth to my lips. Lately, he has been practicing different facial expressions with the frustrated/concerned look being his favorite. His eyes are so intense, I wonder what goes on inside that cute little head of his. When he wants something, he usually takes us to it (if he can't get it himself). When he's hungry, he wines. When he's tired, he giggles a lot or just lies down. When he wants to go outside, he takes us to the door and moves our hands toward the doorknob and deadbolt. His "yes" is a chuckle of sorts.

Autumn

Autumn is here. With it comes unpredictable weather, candy, leaves, and other changes.  Conlan has been doing great in school. I can't believe the first quarter is already finished. His teacher and aides love him and are grateful to have him in their small class of five pupils.

After a couple weeks of trying to potty-train him, the school finally got on board after convening an IEP meeting. He had made lots of progress but even more when he was doing it at school too. Except for wiping afterwards and washing his hands, he does everything on his own.  The only problem we have had is when we are in public. So we are teaching him to communicate to us his need(s). At home, he just goes when he needs to. He's so independent! It's great.

Lately, he has had trouble falling asleep after we put him down. For a while he would just stay in bed after we read scriptures, prayed, sang a song, tucked him in, and turned out the lights. The past month or so, he acts real tired as we're doing the whole routine. But after the lights are out, he gets up, squeals, and giggles like crazy. I say "crazy", because it drives us crazy! We started laying with him, making sure he fell asleep, but then he'd just wait until we had conked out and then get up, waking us up. It can be so frustrating! Last night, I dozed off three times before I left the room out of frustration. I'm just glad there are two of us, one can take over for the other when it's too much. I am grateful though, for I have become much better at using conscious discipline.

A few days ago, Heather noticed him playing with one of his front teeth. Sure enough, we checked yesterday and found out it's loose. I wonder how he'll handle losing it!  Ever since the bathtub incident, I've wondered how old he'd be when his adult teeth would come in. It's going to be different when that missing tooth knocked out by the bathtub is filled in.

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.