Wednesday, December 29, 2010

Another Assessment

We've finished Joseph's assessment at Nationwide Children's Hospital Autism Center. Back in the spring, we got on their waiting list, as well as a list to participate in a study at the Nisonger Center at OSU. The Nisonger Center called us fist and brought us in to evaluate Joseph. They diagnosed him with autism, but he would not cooperate with their intelligence tests so he could not participate in their study so they did not complete the assessment. It was a startling experience, even though we'd expected it for months. We told them we were waiting to get into Children's Hospital, and they recommended we stay on the waiting list for a more comprehensive assessment when they got to us.

Anyway, skipping a bunch of bureaucratic crap, Joseph's assessment at Children's took place in two parts. Last Tuesday, we went in with him and Kristy answered questions about him while two psychologists and a speech pathologist observed him while playing. They told us that they agreed with the diagnosis of autism.

During the ADOS, Joseph did something that surprised me. The psychologist brought out a doll, a tub of clay, plates, forks, and candles. He told Joseph that it was the baby's birthday. Joseph opened the clay, made a birthday cake, put the candles in it. He didn't sing 'Happy Birthday' but he waited while the doctor did. Then the doctor asked him what happened next, and he blew out the candles. This demonstrated a level of understanding that I was unaware of. Next, Joseph took the candles out and cut pieces of cake. At first, the doll had the smaller piece and Joseph a larger one, then Joseph switched them, giving himself the smaller and the doll the larger piece. This is pretty amazing, I think.

Yesterday, we went back for more assessments. He was sleepy, the night before he had trouble getting to sleep so we gave him 1.5 mg of melatonin. The psychologist worked through puzzles with Joseph, I think they were to test his intelligence, and this time he did very well (based on the time between the prompting and 'Good job!'). Only a couple he did not complete, and I suspect that was more because he was unwilling rather than unable. She tried asking him to do things verbally, without any physical prompting, asking him to name objects, etc. It was not easy going, we had to experiment with a variety of motivators. The most effective seemed to be bribing him with little bits of broken up candy cane. Toward the end though, he was not interested in anything we could offer him. He was exhausted and was done working.

In three weeks, I'll be meeting with them again to hear the results of their assessments, then with an autism resource coordinator who will help me make sure Joseph is getting all the services he needs.

None of this is huge news, more of the same. Of course, I'll update with the results of the assessment when we get them.

Sunday, December 26, 2010

Our First Autism Christmas

I don't recall the details of how we made it through Christmas last year. I'm not even sure at whose house we celebrated it with the extended Harris family. Last year we were just starting to figure out that Joseph was different. This year, as I explained before, was very different (has been, I should say, since Christmas is not over yet).

In case you missed it, Joseph is super-freakin' excited about Christmas. He's been singing Jingle Bells and shouting about Christmas trees and telling people Merry Christmas for weeks now.

This morning, I woke up shortly after 8AM. I could hear Joseph in his room, quietly chattering to himself like he does when he's in his room awake and his sister is asleep. I took a shower and woke Kristy and we readied cameras to record the present opening. I opened their door and let Joseph out, woke Maria who was still sleeping and we all went downstairs.

The kids opened their presents, and everything was as it should be. I made breakfast, they both took maybe two bites and abandoned their pancakes. But that's ok. We had some trouble with our dryer, so that delayed our departure for my parents' house. When eventually my jeans were dry, we packed up the kids and gifts for the extended family and headed for Plain City.

At mom and dad's, things started off as usual. Joseph ran around like crazy, Maria played with her cousins. Joseph found the Christmas tree fairly quickly, and it didn't take him long to decide that all the presents were for him. We've been trying to not underestimate his ability to understand what we're saying to him, because he's surprised us so much recently, so we explained that not all the presents were for him, and that he needed to wait for everyone else to arrive. That wasn't received well, you could say.

We tried to redirect him with his new toy, a Leapster. He was happy to hold it, but every time we turned it on, he let out a scream and turned it off again. Kristy tried to lay down with him to get him to take a nap, but he just laid there awake. Eventually, his cousin Celia showed up. She took him out to the mud-room and sat with him. She came back a little later and he was asleep.

When it was time for dinner, we tried to wake him but we were entirely unable to rouse him. When dinner was done, we tried to wake him for presents and he was still quite unconscious. We put him on the floor in the corner of the very loud room filled with 23 people, as everyone opened their gifts. And still he slept. We saved his presents for him to open at home tomorrow. After all the gifts were done, I sat next to him and shook him a little. He didn't respond. I touched his face and he pushed my hand away and then rolled over.

When it was time to go home, then he woke up. He cried. Celia carried him out to the car. I expected that, as usual, he would calm down once I put on some music and we got on the road. But as we pulled out of the driveway, he screamed louder, reaching back towards the back window and crying, "Christmas!" He wiggled out of his car seat, and climbed into the back window. We tried to calm him, telling that we still had his presents. We gave him a wrapper package and a little rubber squeeze toy. That helped calm him enough to get him back in his car seat. He cried for a little while longer, but eventually he put his blanket over his head and calmed down. By the time we got home, he was fine. He opened the presents from grandma and grandpa's, watched TV for a while, the only after-effect was that he stayed awake until at least 12:30AM.

Over the last month or two, I've seen lots of stuff about how to deal with holidays when you have an autistic child. And I didn't read any of it. I thought I didn't need to. I thought it would be as uneventful as last year. Wow, was I wrong! The progress Joseph has made, and the resulting understanding he now has of Christmas and other things going on around him, led to this profound disappointment he felt when he woke up and realized that he was leaving his grandparents' house and he had missed out on most of the celebration there. This made it even more difficult for me than his usual meltdowns over petty, insignificant things.

I know, this sounds like a pretty awful experience. I'm glossing over the positive experiences, for the most part. Though we still have the Smith family Christmas tomorrow, when his maternal grandparents will visit us, I would say that Christmas has in general been a positive experience today. Though not as much as it should have been, and possibly could have been had I bothered to be more prepared and foresee these complications.

In any case, we've learned something new about our son and how we need to be prepared to help him.

Merry Christmas, everyone. :)

Saturday, December 18, 2010

Visiting Santa

Joseph's enthusiasm for Christmas continues to grow. At OT the other day, he strung some beads on a pipe-cleaner and made it into a loop, then held it up to his therapist and said, "Christmas tree!" His teacher at school emailed us the other day, telling us that anything Santa related has supplanted Gogurt as his number one motivator in the classroom.

Saturday afternoon, after an exceptionally stressful morning, we took the kids to see Santa for the first time. Joseph never really seemed to show an interest before this year, so I thought that since Christmas is such a big deal for him this year that going to see Santa was important.

We took them into the store, a garden center, without telling them why we were there. We got them in line, and Joseph still couldn't see. He calmly munched on a cookie for a few minutes, but as soon as the man in front of him moved out of the way, Joseph exclaimed, "Santa!" and started trying to get away from us. He continued to pull on Kristy's arm until the kid before him had finished and we let him go. He jumped on Santa's lap, and sat there beaming. Santa gave him a little bag with a coloring page and a package of hot chocolate.

Thinking about this time last year, Joseph almost never spoke. He usually seemed either confused or oblivious to what was going on around him. He had a grasp on the concept of gift-opening, but that was about the extent of it.  In November last year, we had his hearing tested and we were just starting to consider that he might be autistic.

I didn't start writing this story with a point in mind, I just thought it was a cute story and I needed to post this week. I suppose the point is the progress Joseph has made this year. With all the horrendous suck that 2010 has brought us, Joseph is doing so much better and is making so much progress and I can't wait to see what he's like next Christmas.

Saturday, December 11, 2010

Christmas Gifts

In order to avoid Joseph receiving gifts that he won't appreciate (because any parent of an autistic child will tell you, its tricky predicting what they will or won't play with) I set up an Amazon wish list to help family and friends choose appropriate gifts for him. There are lots of sensory items, some of which I've seen them use in occupational therapy, and some toys that offer the opportunity to practice speech (Mr. Potatohead, for instance).

I found lots of great stuff for the list, but I was hoping to get some suggestions. So what do you think the list is missing?

Tuesday, December 7, 2010

An Early Christmas Surprise

We've been trying for a week to get our Christmas tree put up. Last evening, we started to get it done, but by 8 o'clock we were still untangling strings of lights. We decided to put the kids to bed, and finish the next day.

When Kristy and I went to bed, we heard Joseph sobbing. We went to check on him and found him whimpering in his sleep, laying on his front, with his knees pulled up to his stomach. We took him back to our room to comfort him and let him sleep in our bed. Kristy gave him some Ibuprofen.

Around 3AM I was awakened by the cheerful sounds of my son at play. I woke Kristy and I said, 'You know Joseph's awake, don't you?' Forgetting that he was not in his room when I went to sleep. She got up and went downstairs where she found him singing Jingle Bells (the whole chorus, and quite clearly too!), shouting "Merry Christmas" and dancing around the tree that he had finished decorating to the best of his abilities (taking into account his vertical limitations). Including the candy canes that he had climbed on the counter to retrieve from the top of the refrigerator. Then he got a chocolate cake out of the pantry, sat down on the couch in front of the tree and ate it, getting crumbs all over the floor, couch and my netbook (I was very relieved to find out the brown stuff stuck to my computer was cake and not something else that Joseph has been known to play with inappropriately in the past).

We put him back in his room, but as far as I can tell he stayed awake for the rest of the morning until it was time for school.

First, I thought this was just cute. Thinking it over repeatedly in preparation for writing about it has made me realize something more profound though;  Almost all of the rotten stuff Joseph does, he does for good reasons. Out of curiosity, enthusiasm or just plain joy. Not for laziness, greed, or selfishness. He's so excited about everything in his world that he can't deal with it in a disciplined way. I think this is a very important realization for me.