Wednesday, November 2, 2011

Sensitivity, Understanding, and Practice

     I worked in the schools for 3 years. This makes me no special education expert.

     I am not a parent. This means I am not a parenting expert. And as far as not being a parent, let's also note that I do not have a child with a developmental delay.

     I am currently a behavior therapist at a private, pediatric clinic. This does not mean I am a behavior expert.

    I know what I know. I take what I have learned and experienced, and think about it.


     The disparity between what we do in practice and want parents to translate into their daily dealings with their children is large.

     So, when a client of mine with autism becomes sick, and the reason is because they are on a gluten-free/dairy-free diet, and they tell me that their child "really wanted" the M & Ms and popcorn ball they trick or treated for, thus causing their illness, I am a tad bit torn.

     Firstly, because being able to tell with certain learners that they "really want" something sounds like farce. Secondly, because I can't imagine what it is like to be a parent of a child with barriers, desperately wanting some normalcy with their child -- some semblance of typical development paired with typical interactions. (It is actually interesting to think that a tantrum over candy brings more relief than their constant scripting and pica). And thirdly, because if the way you judge that your child "really wants" something is by the fact that they are tantruming (or other maladaptive methods), then you are invalidating their behavior therapy.

     Being able to relate is impossible. I don't want or care to try. But the professional and ethical side of this is something I am curious about.

     Is it more important to, at all times, be implementing the strands of therapies that we train parents to use outside the clinic than for the parent to, every now and then, build their children up in their minds that they are typical?

     This seems to be parent specific. At once, the parent always wants what's best for their child (their treatment) and to give themselves some mental respite by thinking that their child is defying a barrier; in this case, communicating something aside from their basic human needs. Let's now bear in mind that in regard to some learners, for a parent to feel that things beyond the basic human needs are being communicated to them is a drastic event.

     So, the point. Or, question, rather. Where is the line where we either A) let the parent have their moment, even if disillusioned and, B) telling the parent they are being unrealistic.

     To stray from my previous example, I had a student that would not comprehend addition without expensive, time consuming, and intensive interventions. They were highly maladaptive behaviorally. The parent wanted 90 minutes per day of at-table academics. This learner could not sit at a table for more than 3 minutes without becoming aggressive, tantruming, or eloping -- they were able to sit, let alone engage in academics, for less than 1% of their day.

     When do we say, this is unrealistic and possibly detrimental to your child, even though you think and want them to do it? It's a tough question with an answer that really cannot be standardized; however, we can operate with some basic rules of thumb.

1) If the professional consensus is that what is being done is detrimental to the child, then the parent needs to be educated;

2) If we professionally make our priority list of goals, and the parent wants a C-level goal to be enacted more frequently than an A-level goal, then the parent needs to be educated;

3) If the parent needs a little bit of faith in their child, then we should make concessions to try and accommodate that without disrupting their education or therapy;

4) As it is said in the medical profession, Primum non nocere -- "First. Do no harm." This counts for the learner as well as their parent.

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