Tuesday, September 15, 2009

Documenting - September 2009

It's been awhile since I've written, and one reason that brought me back was the documentation journal that this blog provided me. The other is the outlet to get it all off my chest.

The summer overall was rough as we began seeing behavioral problems surface in John that we hadn't had before. We have analyzed each week with our own interpretations, biases, and "Best Guesses". Some of the reasonings we used were the lack of schedule and routine, too much high fructose corn syrup in his diet, a delayed developmental phase of terrible twos that appeared inappropriate for our almost 4-year old son, John discovering and learning where the discipline line was, etc.

Some of the things we have begun to see are:
  • bolting to a different room in the house when something is upsetting, and "destroying" organization in that room, whether that be dumping books, blocks, or toys on the floor, ripping up paper, spilling a glass of juice on purpose, pushing the ice maker dispenser button so ice hits the floor, or banging a toy on a glass window.
  • out of control emotional responses to his feelings
  • inability to re-gain composure with an intense emotional meltdown that includes hurting himself during discipline (bumping head on wall, slamming hands on different surfaces)
  • anger management issues
  • Emotional responses leading to above behavior when someone tells him he can't do something
  • whimpering and withdrawing when triggered
  • preference to go to sleep when upset (another withdrawing sign)
  • Disinterest in potty training anymore, regressing to almost infancy again
  • Pushing mattress off bed and sleeping on box springs, preferring the weight of the mattress on legs and back at times (sensory pressure)
  • Fleeing in opposite direction in public when he was upset and didn't want to be where we were, with no regard for safety
In response to this, we visited the autistic specialist again, looking for advice for schooling (since we've been denied services through the school district), advice for the behavior at home, and advice about his clumsiness/ankle issues. (John kept twisting his ankle all summer; x-rays show nothing, but his ankles and feet physically look like they are growing improperly).

The doctor suggested a few things - speech therapy, occupational therapy to deal with sensory issues, an in home educator who can help with behavior issues, separation issues from me (since he was having a hard time at the end of the school year with fleeing to the parking lot looking for me, or wandering to Katie's classroom to find her), and a one-on-one aide in the classroom. We are also set to see an Orthopedist at the end of September for his ankles because she does agree that his ankles seem to be too floppy, no muscle tone, and are growing wrong.

Well, that all sounds fine, but when you are denied service, all of the cost for that therapy comes out of pocket. Occupational therapy is recommended 2 times a week at one hour each. I have been quoted up to $190/hour for this service. (that would be almost $400 a week for OT alone) We opted for an in-home teacher at $65/hour to get started.

We enrolled John at two preschools. On Monday and Friday, he goes to the school he went to last year, but we put him in with his own age. Last year, we put him in with the kids who were learning to talk since speech was so new, but he was with kids 1-1.5 years younger than him. So, this year, he is still the oldest in his class, but he's with the kids that turn 4 this school year. He's also at La Verne Parent Participation Preschool (LVPPP) on Tuesday and Thursday.

The first 2 weeks of school were awesome! He was soooo good! Anxiety caused him to chew on his shirt during class, but he had NO OTHER ISSUES at all!!! He has even got to a point where he is close to being potty trained again. It was even reported to me that he consoled a girl who was crying because she got hurt and he told her he'd hold her hand until she felt better. (He actually noticed someone else upset, recognized it, made the effort to socialize, and accurately followed through - way to go John!) Last Friday, Bonita Unified School District special education came and observed him because I appealed the IEP (Individualized Education Plan) last June. He did well that day.

Last Thursday, my husband left for a business trip in China and John came down with a cold. We've been trying to video conference through Skype so the kids can see Bill. John really likes it. The last two days have been draining. When we arrived at preschool, John began riding the bike around the playground the wrong way. He was corrected and told to go the right way. He got off his bike and began walking backwards around the playground, making his way to the bathroom. I was talking to his teacher and I saw this. I followed him, afraid he was looking to run down the hall. Instead, he said he had to go poopy. So, I stepped back to let him go. He started flushing the toilets over and over. I went over to him and asked him what was wrong. He wouldn't look at me and didn't say much. He said he wanted to wash his hands "all by himself" and then go home, so I told him I would sit on the bench and wait for him to wash his hands. then I would let him play on the playground and I would not leave him. I sat on the bench right outside the bathroom door as he watched me. He then turned to the sink and began angrily pushing the soap dispenser making a huge soapy mess in the bathroom. I ran back in and began cleaning it asking him what was wrong and he took off running down the hall. I finally found him in a classroom just standing near a shelf. He told me "I'm having a hard time. School is too crowded". I told him we'd go home.

At home, I set up an obstacle course in the living room, creating a surface to run through out of a memory foam mattress (which we called the mud), had him climb over the ottoman (the mountain), jump into the 4 hula loops laying on the ground, crawl on the box springs of the couch, slide down a cushion, push two exercise balls across the room, and bounce 10 times on another bouncy ball. He did this about 4 or 5 times, each time getting more and more tired. I made him finish the last one, which was a struggle (he went to his room wanting a nap), but he was very excited when he finished his last "Lap", asking for high tens, saying "I DID IT".

Today, he had LVPPP. He was excited to go because it was his share day. Each kid gets one day where they get to take the share bag home and are given a special color. They have to bring 5 objects that are that color and share it with the class. John got blue so he got to bring legos, Thomas the Train, a book, a post office wooden structure we have, and a car. He was ready. We got to school and he was supposed to "sign" in, a ritual they have the kids do. He was signing in the wrong area and he was corrected. He started "stabbing" the paper with the marker, then scribbled all over it, pushed the table around and then started writing all over the floor. I went to grab him and begun cleaning it up, when he ran to the other side of the classroom and started throwing the blocks all around the room. Parents were staring in shock, while the teacher and I dealt with it. A little girl came up to John and told him that he shouldn't throw when he's mad. The teacher is very good with John and she turned to me and told me she would call me if he wasn't doing well. I left and John had a few "sensory" things come up (where he wanted to use his hands in the paint instead of brushes, took off his shoes in the sand, etc.), but no more behavioral issues.

Tonight at home, John became out of control again, running around the house, destroying order and organization. I gave him a time out, during which, he was jumping up and down, throwing himself on the floor, and carrying on. I kept adding a minute every time he'd bang his head or slam his hands on the wall. Once the timer went off, the tears stopped, a huge smile came over his face and he ran to me for his "after time out hug". It's almost as if the timer beep is what he can use to bring the anger under control.

What I didn't know until later today was that Bonita Unified School district showed up yesterday at his preschool again for a second day of observation, that I was unaware of. She called today because she heard I had to take John home. So, I told her about the last two days. They are gong to observe him again next Monday.

I'm a video editor and I'm working on a large project on a Documentary on the Life of Fr. Damien. He is being named a Saint in October. We received a St. Damien medal recently and John has taken a fond interest in it. I also made duplications for a priest of the Damien chaplets with the prayers and songs you can say to Damien, asking him to pray to God and intercede on your behalf. The chaplets I made were on CD, so every once in awhile, I pull one out of the bunch and put it in to make sure the duplication burn was good. So, John has heard it play a lot. He learned the song before I did. He now takes his Damien medal to bed with him, and sings the song. I pray with him and it's cute to hear him ask Jesus and Fr. Damien for a "marigold" (miracle). I want to help John so much. He is doing so well from where we began 18 months ago, gaining speech, cognitive skills, reading skills, etc. But, emotionally, he's lost. There is this cloud that comes over him, his sensory information gets in the way at times, and he is out of sorts. I feel so bad for him and just want more than anything to give him peace and take away the anxiety he feels. The best I can do for him right now is pray that he gets his marigold.

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