February 13
So Luke's been having issues at school. Arrgh. Apparently he doesn't sit very still during circle time and can be quite noisy and disruptive, even during music class. He will often run away during gym time, and sometimes trys to run out of the classroom which is scary and frustrating. I called OCAI to come and talk to the 3 women involved in Luke's life at school: Ms. F., Ms. K., and Ms. T. OCAI observed Luke and were honestly very surprised at his behaviour. Luke has not been considered a behavioural problem child; and although they had a tough time with him at the beginning of preschool two years ago, they figured out how to get him to sit still and cooperate. This is all very saddening for me, as at home he's pretty relaxed, talks quite a bit, and knows his place. He is disciplined the same as Joel and he readily apologizes when he's been misbehaving. He desperately needs boundaries and needs to know what my/our expectations are of him.
At school, it seems he is running the classroom. After an hour meeting, OCAI (BCs) gave the team some effective strategies, the most important being to keep Luke included in the circle time, gym time, music class and if he acts up or tries to get away, keep bringing him back to the task at hand. He needs to know that he cannot just leave. I was at a loss as to how to help, but asked for some advice from other parents. One mom reminded me of the positive reinforcements, rather than the negative ones we were implementing (time-out chair, taken out of the classroom into the hallway). Luke did not consider these punishments, but actually tried like a monkey to get off the chair, or would happily ask to go for a walk when out in the hall. He succeeded in getting out of the "task at hand" and he was happy. So we brought in some positive reinforcements like a kooshie ball that he could play with during circle time to keep him focused; and a reward of getting a drink of water at the water fountain if he sat still for the expected time. That seemed to work for a bit.
The teacher is (understandably) frustrated with Luke's "loudness" which is very distracting. I'm just as frustrated because this was an issue that was resolved in the preschool environment. And now we're more than half-way through the year and I'm being told Luke is too disruptive to teach and he may need to re-do kindergarten. At home, in the one-on-one situtation he continues to progress in most of his programs, so at least he's not regressing across all interventions. In any case, I am annoyed. I thought it was time to see for myself what Luke's behaviours looked like so I went into the school for the morning last Tuesday. He was not too bad in the first circle time, mostly because the teacher had all the students engaged by having them take turns at the various tasks (what's the weather like, bring the attendance to the office, answer questions, what day is it today, yesterday, tomorrow). Normally only one child gets to be the special helper while all the others sit for the entire circle time. I thought this was a great strategy to keep all the children paying attention, as they all wanted to take a turn to help the teacher. Anyways, it worked for Luke that morning (the scheduled special helper was away sick). Anytime Luke looked at me, or got up or acted up a little, I used sign language to get him to obey ("sit", "turnaround", "shhhh, quiet"). I think he did pretty good and certainly didn't scream out and was not overly disruptive. Perhaps, of course, because I was there...
Luke was pulled from the circle time to do some "physio" which is set up in a closet. He was acting up, but finally I picked him up and moved his body into the motions he was expected to make (roll like a pencil, roll a medicine ball across a bench, pull himself lengthwise along a bench). He finally did all three, and was rewarded with a sticker. I was proud, he did well. When we got back the second circle time started where they learned about a new "letter"; Luke got to work one-on-one with the assistant by writing the newest letter on a paper 20 times. He stayed pretty focused on this... and accomplished it with the "first do this, then a sip of water at the water fountain" (positive reinforcement, using the "First, Then" technique (quite successful with Luke. After this, they got to play for a while (Luke chose the rice table) with another girl. He was not too into it, but sat quietly to the side. The music teacher came to get Luke and this was the real test.
Unfortunately, two of the people involved in Luke's schooling did not get a chance to see how we were handling him. Luke was very disruptive, pushing all the buttoms. He would only sit still on his spot for a very little time, get up and wander away. I would sign for him to sit / turnaround. If he didn't obey, I would go get him, and make him sit, firmly and assertively. Showed him who's boss and that he can't get out of it. We spent most of the music class doing this. When he would look at us (me and the assistant) to get our attention so he could "disobey", we ignored him and focused our attention completely on the music teacher with excited or serious faces depending on the situation. When it was time to have him sing and dance we modeled for him first (hand over hand prompting) so he could understand the muscle movements... and then we stood in front of him and got him to do it with us. He would do parts of the dance.
When he was asked to use crayons on a construction paper heart with the teacher, he would just walk away. I guided him to the task, made him sit down (not forcing, but assertively) and explained this is what is expected of him... pick up a crayon and colour. When he knew he wasn't going to get out of it, he picked up a crayon and coloured a little. I praised him tremendously! Then I made him get another crayon and do a little more... which he did. I praised him again. Then hand-over-hand I helped him write his name and then told him how proud I was, we clapped and hi-fived. He did the expected craft and then we sang a song where we dropped it and picked it up. It was a lot of work to get him to do the task (took a lot of coordination for him), but he attempted it most times, while we continually sang out loud and modeled for him, helping him if we needed to. It was kind of hard to watch his behaviour, but I know in my heart if we continue to bring him to the expected task he will realize we are in charge and he needs to do what we ask.... there was no more allowing him to get out of it. I know if we continue this method his behaviours will calm down and he will be more cooperative and agreeable and quiet. We went to the gym next and Luke sat on the scooter board as the teacher directed, and tried to walk it around. He soon realized he was exhausted from the music room antics, so he just lay on the scooter board. We let him. He was in the class, he wasn't acting up and he wasn't running away. He needed a rest. He put his scooter board away when told to and got into line. At one point he got out of line and I went and picked him up and put him back in the lineup. There is no more getting out of line! Keep steering him back to the expected behaviour/action.
We headed back to class where he slowly ate his snack all by himself (I'm so proud... we spent the first 5.5 years of Luke's life feeding him!). Then he got into the final circle time and sat quietly for the story without any problems. I was busy helping the teacher with a project so I ignored him, and he was well behaved. I felt it was an incredibly successful morning and was excited that the assistant was so willing to learn and totally agreed with this method / approach. My tears in the morning before school in the parking, and my prayers, seemed to be answered. I was very happy about getting involved and being part of the solution (and appreciated all the thank-yous from the teachers).

Sadly, I found out on Wednesday the teacher was again frustrated with Luke's behaviour and had the Learning Assistance leader instruct the assistant to pull Luke out of the classroom again and have him sit on a chair by himself in the hallway. Sigh. I am so, so sad. I reached out for more advice from my autism parent's connection and was informed that a woman from POPARD could be requested to come and do an assessment and advise on the situation. I need to fill out 4 pages of forms before tomorrow, and start squeaking to get this person here asap. We are losing valuable time as there are 5 more months of kindergarten and the autism funding which supports Luke's assistant is not transferable to a more suitable school.

I also am doing a "reading" program with Luke at home which he is totally catching on to, slowly but surely. He is keen to do it with me, and I'm excited to be helping. He will learn to read, and he will learn to write. There is NOTHING Luke can't do! He's amazing, I just constantly pray for the right people to be put in his path to teach him!

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Wednesday night (to Sunday - today) our little family of four snuck away to Sun Peaks Resort for a mini family vacation and, in a timely way, to regroup around this education dilemma. It is a winter wonderland, geared for families at Sun Peaks. I highly recommend it. We bartered (website design business) for the 4 nights in a condo complete with hot tub and kitchen. On the first morning we took the boys toboganning and I kept my expectations super-low as the last time I took the boys Joel had a blast and didn't want to leave and Luke just kept pushing the toboggan down (without anyone in it) and kept bugging me to leave. I dropped my jaw as Luke insisted on going with mommy or daddy down the hill. He would say "This is fun!" and when we were at the bottom (it was a substantial hill!) he would say "Let's do it again!" and he would climb up, almost always by himself, up the steep snowy hill; sometimes attempting to carry the toboggan, at least partway. He was AMAZING!!! By the end of the hour he was going down ALL BY HIMSELF both sitting and lying down facing forward. It was the most exciting thing I've seen in a very long time and our family had such a blast together. We did that every morning for an hour for 4 days! He loved it, and would ask "Can we go toboganning?" The other exciting outdoor activities were his first attempts at ice skating and cross country skiing. In both cases he did not go far, but he tried it and that's all we expected. On the ice rink we would put him in a big blue bin and push him across the rink, and then take him out so he could push it back to the entrance where he was allowed to "Take a break". After a while, he'd be ready to try again. I couldn't believe his courage. BTW, Joel's a natural at almost all sports... he cross country skiied for quite a while with dad; and can go on the rink by himself (he walks on the skates across the ice)... he also wanted to play hockey and would bat the puck around a bit. He loved it. So now we're home and I am so encouraged by Luke's physical abilities and stamina. Let's hope the kindergarten issues can please, please, please be resolved to everyone's satisfaction so the team there can realize he can learn anything... just have to figure the best way.

One interesting note was that when we were on the toboggan hill, another girl joined us and that was okay with Luke. However, when two more kids and then three more kids and their parents all showed up, Luke literally stopped at the top of the hill. He was so overwhelmed by all the people, he could no longer function. We knew it was time to go. Interesting! And we also noticed this at bowling a couple weeks ago. We were all bowling fine, and Luke was having a blast; but all of a sudden the music was turned on and was kind of loud; and we noticed Luke seemed to freeze... he couldn't handle the added distraction and for the rest of the game he was totally thrown off. Also, interesting. Kindergarten with all those children must be somewhat overwhelming to him... I read a book about that a while ago about how the classrooms of "old" were very simple and almost austere, but now every square inch of the wall and space is covered with pictures and posters and letters and numbers. I think Luke just needs a nice easy schedule that is calm without too many distractions in order to focus enough attention on learning and retaining information.

February 20
The assistant has been a little frustrated by some of the inconsistencies in discipline for Luke, so she spoke to one of the Learning Assistant teachers. Everyone involved in Luke's schooling is now getting together on Tuesday to create a plan for Luke: what is acceptable behaviour and what is not. I wasn't invited, so I will keep my nose out, lol. Ms. K. knows my thoughts and feelings on which battles to pick with Luke so I trust in her to convey them. She is SO awesome, but unfortunately will only be with Luke until the end of March; at which point the assistant from last Sept-Dec (M-T-W) will be back full-time until the end of the year. Last week there were two different subsitute teachers from Tuesday-Friday. One was very supportive of Luke and so tolerant of his fidgetiness and his very occasional outbursts (allowing Ms. K. to use the strategies the BCs and I taught her). It was obvious that these strategies are successful... just a little bit of disruption for two weeks while we train Luke that he will not be able to get out of anything despite his antics! He's a quick study if you give him a chance. Our philosophy is to put up with a couple weeks of discipline/disruption in order to resolve the issue... OR continue kicking him out of the classroom (which is what he wants) and have a disruptive situation for the next four months. Anyways... Ms. K. told me how she put Luke on the little chair just outside of circle (so he's not exactly getting "out of circle time")... she said to Luke "do you want to sit here, or with your friends?" He thought for a minute and said "with friends". He still fidgeted around a bit, but the point is he understands. He also took off at one point (not as far as usual... closer to the circle), and looked back at Ms. K. and gave her the look, and even SAID "aren't you coming to get me?" and she shook her head and said "no, i'm listening to the story" and turned her head and attention to the teacher.... sure enough, Luke came back.

I have to make a special note of what the one substitute teacher said (knowing Luke for only 2 days).... "I think he's going to do fine, and make it all the way through high school and into the world"... words to make me cry. I wish every teacher in Luke's path could see this potential in Luke. He has come SO FAR, it's miraculous. I am so, so proud of him.

He is calmer now, moreso than a few weeks ago. In a moment of intuition and (somewhat) desperation I brought back his digestive enzymes. His disruptiveness began last November-ish and that's when we took him off the enzymes, so my gut says he needs them again. I will discuss this with Dr. Bratt when we meet with her on March 7. His obsessiveness with doors is tapering. He is asking to go ice-skating and bowling.

BTW, the reading program we began two weeks ago is going well. Luke is very interested and even requested to read it. For the first week-and-a-half when he wanted to sound out the words he would say "L-U-K" spells clown, or pirate or cowboy... it seems "L-U-K-E spells Luke has been so ingrained in him! Anyways, at the end of the two weeks he was saying "I am a clown" and "I am a pirate" and "I am a cowboy", with just a little prompting. Next book, please! Repitition, repitition, repitition... I am planning to do each book 1-2 times a day for 2 weeks so Luke really gets it. He really is keen to learn... just needs positivity and patience.

February 28
For the last week of February Luke was really, really good at school. He turned it all around and began to behave again. Why? I don't know, but I believe it was a combination of Dr. Wagstaff's homeopathic magic, Ms. K. (the assistant) implementing the correct strategies, and maybe even a bit of me having a happier and more positive attitude. This last result is from a book called "Awesomism" which talks about the "sixth sense" and emotional sensitivities of children with autism. Luke could very well have been picking up on my frustrations, so I've decided to remain more positive, calm and reassuring around him. Oh, and of course realizing all this worry about Luke wasn't solving everything so I just "Let go, and Let God"; allowed him to carry me once again as in the "Footprints" poem. I had not realized how overwhelmed and exhausted and disappointed and frustrated I was and that everything was beyond my "fixing" and "control" so I just let it all go and gave it to God. He took over and now everything's okay again. Luke even answered some questions about numbers that the teacher asked (answers he did not learn at home, so he is learning something at school!)... and he sang along a little to some songs in music class. Yay Luke.