Living In Three Worlds

I work in an elementary school with special needs children.  Recently I ended up in the Autistic Pre-K because they needed a hand and I have the experience.  I was not ready for the emotions it would bring up.  While there are many things I could bring up one thing happened that made me flinch and I thought I would write about it here.

One could say I wear three hats.  First I am a parent of an autistic child.  Second I am a teaching assistant.  Third I am in grad school for ABA therapy.  All of these things touch on the world of Autism in different ways.  So while I was helping out in the pre-k I overheard some of the aids talking about what they think happens at home and what they think the parents are or are not doing.  This hit me like a blow to the gut.

Flashback to a moment over a year ago when my son was having issues at school.  He didn’t have behavioral issues at home though.  The teaching staff came down hard on me as a parent stating we needed more structure in the home and blaming us for his behavior.  At the time we were highly structured in the home and I had more freedom to follow through with the ABA principles I had been taught.  Still faced with these people who were supposed to be “professionals” and know what they were doing all I could feel was tremendous guilt because they convinced me through a position of authority that I was doing something wrong.  Letting emotions get the better of me I started giving in to punishment more than reinforcement for things he did at school, which if you know anything about ABA the closer temporally to the behavior a consequence occurs the more power it has and punishment can elicit problem behavior.  Then behaviors started popping up at home and while continuing to hear this negative discourse from the school it acted as confirmation bias that I was a terrible parent.

Flashforward slightly to graduate classes and talks about behavioral contrast.  When under extinction conditions in one environment a behavior can increase in another environment despite there not being any change in the second environment.  The light bulb, that was what had been happening to my son.  We put many problem behaviors on extinction at home and the behaviors increased at school.  Again a huge wave of guilt for not trusting myself in the first place when I knew it wasn’t what we were doing at home (per say) that was the cause of the behavior.  They needed to address the problems working with us because it wasn’t a lack of structure at home that was the problem it was that the school wasn’t as structured and could not follow through with extinction like we could at home.  If I had put my foot down and made them work with us instead of rolling over and taking the blame I could have avoided so much mess.

Flashback to next school placement.  They had a token economy in place for good behavior but if you had too many negative marks against you then you could not go to the store to spend the tokens.  My son was already having too many issues when he got there so he was never able to behave well enough to get to the store.  The problem behaviors got worse.  He would make a small mistake and when he was told he made a mistake he would freak out.  He called the staff liars and things would rapidly escalate.  I thought that it didn’t seem right that he earned money for the store but could never spend it but I kept my mouth shut because therapists were making these programs and they worked for the other kids.  The school here didn’t directly blame me, in fact, I got overtime working at that program, but there was this underlying feeling as I came in there weeping and desperate not knowing what to do that they sympathized and believed when they said that they felt my best was not enough at home.

Flash forward to more grad school.  Talking about token economies and how they don’t work if the child can never access the backup reinforcement.  Suddenly it all made sense.  In non-behaviorist talk, he wanted to go to the store and had earned money for it but could never get there.  When he made a mistake he became frustrated because he was trying and failing and at that point, he lost control and things got worse.  Again another massive wave of guilt because instead of doing what I thought was right I trusted people who were so called experts and they were doing the wrong thing.

Flash forward to talking to a co-worker right before working at the pre-k.  We were talking about a student who was having behavior issues.  We have seen the student with their parents and the parents are highly critical and authoritarian.  The student will constantly call himself a screw-up, a mistake, and many of his behavior issues occur when he is telling himself he can’t do anything right.  My coworker and I were talking about how his behavior might occur because of the way his parents treat him.  Not bad enough to be abuse but not helping.  Then talking about what we could do to counteract some of those negative effects.  It helped us brainstorm ways to solve the problem and looks for areas that might be lacking at home we could work on more in school.

So back to where this all started.  I am in the pre-k listening as two of the aids are talking about what they think the parents are or are not doing.  I understand from being in education how that can have positive effects in finding solutions and how it can help with stress when you are desperately trying to help a student and it isn’t working as well as you would like.  I understand from being in school for ABA that even if it appears one way from one position that isn’t always what is going on and there has to be transparency and collaborative approaches for the best results.  Frankly, it is just if not more common for the issues to come from home than the other way around I am just fortunate enough to have the educational background to avoid a lot of the issues guess work can cause.  However, as a parent of an Autistic child who had so many issues because the school wasn’t doing things the right way (even though other children were successful) all those feelings of hopelessness and guilt and self-hate came right back up to the surface.

The plus side of doing what I am is that I can talk to teachers, parents, and therapists in a way that helps all parties understand situations better because I have played all three roles.  More often I find myself stepping far outside of my role in any one position and going the extra mile to facilitate those conversations.  However, in any of those roles, you have to be willing to check your own behavior.  As a parent, I could have spoken up more and if I did not feel confident doing that I could have researched more when I felt something was off to support my position and gain that confidence.  As a student, I could have consulted with my teachers to get more information.  As an educator, I should have been more willing to share my experiences with others in my field to show them that how they interact with a parent can have deleterious effects on the parent and their home interactions.

I am not saying to not trust the education professionals.  What I am saying is all of these roles are hard and no one is perfect.  A system works perfectly until it doesn’t and when it doesn’t maybe the answer will come from the school, maybe a therapist, or maybe from the parent.  Communication and problem solving are key to success.