I have been sitting here staring at my computer screen, trying to think of what to say about our public school experience and why we are returning to homeschooling. Do I go off on how, as in my child’s early and intermediate intervention experiences, we once again had the problem of various team members thinking in silos when managing my daughter’s case? Maybe I should be kinder and say, she does have many co-morbid conditions and it is complex, so she is a challenging case and it is just easier for her to learn at home from one person who knows her whole history? But every time I sit down at the computer, one word pops into my head and will not leave, so I just looked up the exact definition for creative inspiration:
Clusterfuck (urban dictionary definition): Military term for an operation in which multiple things have gone wrong. Related to “SNAFU” (Situation Normal, All Fucked Up”) and “FUBAR” (Fucked Up Beyond All Repair).In radio communication or polite conversation (i.e. with a very senior officer with whom you have no prior experience) the term “clusterfuck” will often be replaced by the NATO phonetic acronym “Charlie Foxtrot.”Example: By the time the artillery came in the enemy was already on top of us. It was a total clusterfuck.
- I learned that our team thought they knew how to engage autism, but they are totally untrained for the “difficult to engage” child. I know they are not qualified because we have hired high-priced consultants and therapists who are masters at Floortime (no dear person at our first IEP meeting who thought she was a Floortime expert, it is not working on the floor, it is a method for engaging a child that requires you put your adult agenda aside [sort of, because you still have to have a firm grasp of development and keep goals in the back of your mind to gently expand the child] and it does require formal training). Orienting my child and helping her tune into her surroundings and other children was missing when I observed. There seemed to be the underlying assumption that she was very difficult to engage and there was nothing to be done about it. During 4 hours of observation during education week, I saw many missed “communication bids” from staff that could have led to an engagement. My offers to make custom visuals of favorite stories and send in motivating materials were brushed aside.
- My kid was getting less socialization in school than out of school. When I observed Beth at school she seemed disconnected. She was not being helped to tune into others and engage and “social group” is once a week. Need I say more? She got more out of going on play dates, to play centers, and going on community outings when we homeschooled.
- I now get why the “presume competence” crowd is totally pissed off. It is because the assumption in our school is that the goal is to catch up to peers in totality, and when you have a child with extreme uneven development in motor planning, fine motor, expressive language, play, physical capabilities and academics, he/she is basically written off as incapable. For example, staff simply cannot wrap their head around a child who can do academics, but only if given the right motor planning and expressive language supports. I am aware that my child cannot motor plan for shit, but we are working on it and she is making slow progress. So I begged the school in the beginning, please don’t let her die of boredom working on the same concepts over and over…fix the motor plan and expressive language used for academics so she can progress and work on different motor plans in occupational therapy and language issues in speech therapy. It seems simple, but I couldn’t get anyone to consistently fix the motor plans and language constructs due to the number of people involved.
- If you have a child with co-morbid issues like dyspraxia, visuomotor problems, low tone, and anxiety, it is hard for staff to remember how to support him/her. I would look up after trying to explain my child for the 50th time and see the familiar stare of deer in headlights. So the need for accommodations like elevating work, right table height, simplified layout, using her finger to guide her reading, working on the lower part of an easel, special prompting to help her move her body, etc. was lost on most staff. Also, My child could not sit at school, but she can sit at home, so how can she reach her academic potential? Part of it was the totally unsupported seating at school, which was only resolved when I brought in our own chair from home because the mammoth system moved so slow. But also I think she was overstimulated and stressed. So while Beth was not totally flipping out in school now (yeah! progress from the old days!) she was still anxious. Which brings me to my next point.
- The final nail in the coffin was the behavioral report. I love that these reports like to “note” possible sources of “behavior” from parents, suggest OT assessments, admit history of anxiety, but in the end, our children are treated not as human beings with feelings, but children to be controlled by static “if child does this, then do that” formulas that a behaviorist can hand over to staff. I cannot live with that. I agree that Beth’s stimming can get in the way of learning and engagement is a problem, but I want to work with Beth to help her help herself. I want staff to own up to their end of the engagement problem and be trained to better engage her. I want staff to try to understand what she is thinking and why she is doing what she is doing when she is stimming. Otherwise, stopping “stimming behaviors” in a blind fashion will lead to worse behaviors and a child who feels powerless and misunderstood. When “behaviors” occur, I want all staff trained to see my child as a whole, and combine child psychology, behavioral strategies, OT techniques, and sensory strategies to help her. But that is just not the way the system works and I am not sure if it is a training issue as much as it is a mindset.
And these are the positives of the experience:
- I had an awesome home behaviorist and she had some good ideas. I will miss her. She encouraged me to weave intraverbal goals into play and throughout the day and that will be a big effort going forward.
- I learned we need to work harder on engagement and we need to work through some of the stim issues.
- Let’s just say my confidence in my homeschooling abilities is up. Way up.