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Autism Educators' Job, No Picnic

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Living in the world of Special Education is not an exact science...

As a parent, I deal with one child who was diagnosed with severe autism at the age of three. She is seventeen now. Upon that her initial diagnoses we did some precise things. We put her in a specialized preschool room with an amazing teacher and devoted staff. We implemented a whole lot of speech therapy, above and beyond what the school provided. We even implemented in-home intense programming for about three years; that is, up until the time she was mainstreamed in kindergarten with the help of a full time educational assistant. 

I went to kindergarten with my daughter for a while, since autism was a bit more rare at that time - it seemed somewhat acceptable to have me there, since I needed to offer some interpretations for my only slightly verbal daughter. In a sense - I was a most precise interpreter for my daughter, but only her, since my ability to understand her so completely would not transcend to another child with severe autism; one whose history I had not followed. I had become my daughter's expert, with the help of mentoring from so many professionals that had come into my home to bring me up to speed.

Kindergarten was considered a surprising albeit tentative success, and I would have to say it might not have been a success but for the greatness of the teacher and educational assistant - and the absolute brilliant peers that were in the classroom alongside my daughter. To say these kids were brilliant is not an exaggeration, and I have notes from the kindergarten year that prove such. There were still the very important considerations about what might happen the next year; the concerns were many times kept hidden, simply because one could never know for sure what type of progress might occur in my daughter's overall development. The label autism, does not offer exactness as far as knowing what educational requirements will come up from year to year. Every child who receives the label presents differently!

First grade went okay, but there was a downward trend as far as performance. Stagnation and regression seemed to be rearing its head. Behaviors began to get the best of my daughter. Some might be explained from a behavioral perspective, as in she was doing it to get her way. However, other behaviors were not at first recognized for what they were; this went on through many of the early elementary grades. Not enough emphasis was placed on medical (neurological) concerns and possible treatments for them - that I personally had never considered as a part of my daughter's autism. Years later the concerns would be described as "catatonia", "absence spells" and " automatisms". I guess in her earliest years it was easy to look at the autism as something that might be eliminated via therapies that allowed for re wiring of her brain...

So eventually I found out that some of my daughter's presentation might be considered more of a medical concern (not just behavioral science, ignore and redirect stuff). By the time she reached ten years of age, hallucinations were evidenced while the neurologists gave the behaviors she exhibited all the differing names. Eventually, my daughter was able to actually verbalize things and describe the content of the hallucinatory events. Psychosis made our journey less exact as far as helpful interventions. I did not even want to involve the school in the issue because the involvement in mental illness was so great. Now the behavioralist mom who had refused medication as an earliest intervention option, would accept the need for medication trials.

For several years the doctors helped us try to find medication that might give relief. During those many years I was compelled by the doctors to accept placing my daughter in a specialized day program, even though we had not yet identified medications that gave relief. Eventually the day program would have to call and have me pick up my daughter because behavioral interventions were not successful and the psychosis, too great. Most thought she really belonged in the state hospital. That being said I was allowed to continue to bring her to the day program, but if things went too wrong I was required to pick her up. I was okay with it though because the people at the school kept trying and didn't force the issue of placement in a state hospital setting.

After years' long trials - Medication was identified that brought things under control for my daughter. Medication and a constant supply of differing forms of redirection (to eliminate so many bad patterns that had developed) was what she needed. While it was hard to explain the underpinnings of the differing patterns (thought processes) that had developed and how to redirect against them, I could at least do these things when my daughter was at home with me, especially once the medications gave relief from the manias and aggression. Since my unique form of intervention was too hard to explain, I simply hoped the other behavioral supports provided by the day program would offer a structure that would give her more control while at school; and they did. She eventually was able to transition back to regular high school special education. The transition was eventually a success, but there were many obstacles for the teachers simply because of my daughter's unique, difficult and complicated presentation.

It would never be appropriate to think that these teachers might immediately have an exact or precise understanding of all that is entailed for such a complicated child. For those in special education each child is a learn by doing experience, but in more extreme terms since the baseline of the autistic child might better be describe as baseline squared. There is the baseline when the child will do quite well, and there is the baseline where all hell might break loose. (Periods of sustained better function might last weeks or months, but rarely through a whole school year.) When all hell breaks loose, that hellish baseline is one that is exponentially difficult to intervene upon and understand. Intervention required will in some ways be exact, but also unique to only that child.

Best said, insightful response from the teacher to the fluid nature of the differing baselines is what is required. This is not an easy task and in no way exact.With the autism statistic rising, what is on the horizon for the special education teacher? I have only my child to deal with, but the teacher must deal with a room full of them. Each unique in their baseline squared. This is concerning, especially given that some presentations include aggression. It appears that not only is staffing a concern, but unique placement that offers safety when the autistic child is struggling with the more dangerous behaviors. My desire is the see teachers being given the support they need, but this includes giving them a looking glass in order that they know what might be expected of them in the future as the rising statistic finally ends up in their classroom.

*A sixteen year chronicle of my daughter's educational and health experiences is available. It is called Hello, Dr. Wells. I am a mom, and I like to write - and my family's experiences lend a lot to the autism conversation.


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