Mowgli turned 6 years old yesterday! In celebration of his birthday, I figured I'd better post an update. It has been a few weeks since I have written...we have a lot of birthdays, and different events going on during this time of year.
Let's see...at the beginning of September, Mowgli started kindergarten. It was a tense time for us. We were unable to sell our house, and the thought of starting Mowgli in a school district, that has a less than stellar reputation, was hard to bear. Many times since Mowgli was born, we had been warned about the quality of the Utica School District. After Mowgli was diagnosed, the warnings became more intense. It had been stressed to us that, if a neuro-typical child could become neglected by the school system, one could only imagine what would happen to a child with special needs. Our minds had been marinating in all the warnings, and I spent the days leading up to the 1st school day feeling helpless and disappointed. Once again, I felt that I had let him down.
The week before school started, we had a meeting with Mowgli's new teacher. We knew that Mowgli was going to have a heck of an easier time transitioning if he knew where he was going to school, and was able to see a familiar face. The meeting went fairly well. Mowgli was able to explore every nook and cranny of the classroom. His teacher allowed him to sit at her desk, and he went into the little bathroom several times to turn on the water, and flush the toilet. He smelled (and tried to taste) the toys, he opened drawers. Had he not been able to do all these things ahead of time, the desire to familiarize himself with the classroom, would have consumed his thoughts during those first few days. My first impressions of his teacher were that she was kind, and open. She exhibited some nervousness at Mowgli's energy level, and joked about needing to buy some running shoes. She explained to me that she had worked as a teacher, then administrator, then teacher again throughout the last 30 years. Her most recent experience was with special needs students in a junior high setting. Although she had not worked specifically with autistic children, she assured me that she had just completed some training on working with children that were on the spectrum. Her lack of ASD experience made me nervous, but her honesty made a positive impression on me. Her willingness to meet with us and answer all of our questions (and let Mowgli ransack her classroom!), were also good signs. While we talked, I would catch Mowgli glance at her, smile, and slowly flick his fingers in front of his face. Clearly, this new teacher interested him too.
When the bus pulled up on the first day, I was thrilled to see a familiar driver and bus matron. Over the next week, Mowgli came home from school happy. The teacher's notes home were very brief, but positive and encouraging. All my fears about the new school had been lifted, and I thanked God.
The following week, we enthusiastically went to the school's "open house". Immediately, his teacher alerted us (and the other parents there), to the issue of our children's inability to sit and do their school work. In a classroom with 9 autistic children and 2 children with MR, ranging from age 5 to 9, my immediate, internal response was "yeah duh!". The teacher went on to explain that the kids were "all over the place", and that she was having a hard time controlling the classroom. When I looked around, I noticed the lack of tools for sensory input. Mowgli's problem with inattention is directly related to his sensory issues. Mowgli is mostly a "sensory seeker". Mowgli's proprioceptive (which, senses body position) and vestibular (which, senses balance and movement) senses, are under-responsive. To put it simply, Mowgli can spin for an hour without getting dizzy. He is what we call a "crash and burn" kid. He jumps, he bumps, he touches things (usually with a lot of pressure), he breaks his crayons, he chews everything. All these things he does in an attempt to be connected with his body, and his surroundings. Anyone who has ever been dizzy from an ear or sinus infection can understand how it feels to have a vestibular issue. Anyone who has ever had a foot fall asleep, and tried to walk on it, can get an idea of what it's like to have an under-responsive proprioceptive sense.
I began to explain to Mowgli's teacher, that he would have a harder time attending, if his sensory needs were not being met. I asked her about his occupational therapist (who was in charge of his "sensory diet"), and found out that the therapists (speech, occupational, and physical), had not started working with the children. The room went silent. A mother of a little boy in Mowgli's class, explained that her son only communicated with sign language. "Did she (the teacher) sign? Did one of the 3 aides?", she asked. The teacher could not sign, and didn't know when the therapies were to start. She had anticipated our concerns, and was feeling overwhelmed herself. My confidence in Mowgli's new school was plummeting. No wonder Mowgli was not sitting to do his work, he was sensory seeking the entire time he was at school! To make matters worse, the teacher informed me that she had been keeping Mowgli inside during recess, to help him clam down...she thought that would help him. What?! That was the only time he was able to get some sensory input, from jumping and swinging, and he was being denied that time! It was too much, I looked at Fred, who was talking quietly to a mother who was crying. It was time to go.
That night my husband wrote an email to the superintendent, district head of special ed., principal, and teacher, expressing our concerns. The next day, my husband called the principal. Mowgli went on recess that day (and every day since), the therapies started the following week (as per the amended IEP, that none of the parents had received). The teacher called a few days later to update me on Mowgli's progress at school. Things were going so much better!
Throughout the "first week drama", my only comfort was that, Mowgli woke up every morning happy to go to school, and came home happy too. Clearly, his teacher was trying her best to keep him content. I know her heart was in the right place, she was just beginning to understand the individualized, and complex issues that come along with a child diagnosed with ASD. She wasn't working with 13 and 14 year old kids anymore. She was working with children, at the age when the delays and sensory issues are at their most severe. It is not a job for the impatient, or inflexible. If she was up for the challenge of teaching these students, I was going to help her any way I could.
Recently, Mowgli was sent home, for what his teacher (and school nurse) thought was an earache. I was perplexed, since he had not had a cold, and had been happy when I placed him on the bus that morning. I took him to the doctor's and his ears were healthy. That afternoon, his teacher called to check in on him. I explained to her that he was doing well, and we began to investigate the cause of his ear covering, and screaming. I suspected that he was reacting negatively to some sort of noise, or sound (sensory issue?). "Was there a child crying at the time? Was there music playing?", I asked. "All of the above!", his teacher chuckled. She decided that she would need to turn the volume down on the cd player, and suggested keeping the lights off (during that time) too. Those ideas sounded great to me. A few days later, I received a note from the teacher, that the ear covering and screaming (from several of the kids), had stopped. It felt great to have helped the teacher find a solution to the issue.
Although we had a bumpy start with Mowgli's new school, things have since been going along smoothly. The staff isn't as ASD educated as they were at Mowgli's old school, the therapy toys aren't as plentiful or sophisticated, but the teacher is genuine and Mowgli's adapting beautifully.
Mowgli's speech and language issues are slowly, and steadily improving. He hasn't been having tantrums, or punching himself. He's following directions better, his fine motor skills are improving. He actually opened his birthday gifts, sat near his birthday cupcake (without impulsively touching the candle flame), and blew out his candle last night! These were skills he didn't have a year ago! He is making friends with his classmates, and is becoming a class clown. He thinks farts, burps, and yucky things are funny. Occasionally, he and another student like to be "silly" and disrupt the class. Well, he might have ASD, but he's still an Arcuri!
It makes me smile, to see that he is doing "normal" kid stuff. It is a pleasure to see him learning, developing and happy.
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