Not every story has a successful ending

On most days people appreciate the things I do, which is a positive reinforcement for me to continue with those tasks that keep my private practice running. However, the reality is that sometimes people don't appreciate or understand what you are doing, even if you take the time to explain. Today seems to be the right day to talk about an experience I had when someone was not able to appreciate my efforts.

Collin’s mom is single or divorced – I am not sure which. She has two children by two different fellows, neither of whom believes that their presence is important in the lives of the children. The mom does not work outside of the home; her primary role is as a parent.

Their apartment is in a blue-collar town outside of a large metropolitan area. The town is famous for its chemical dumps and environmental toxins. I do not know if it means anything, but I cannot listen to AM radio in their neighborhood – there is just too much RF interference from the high-tension electricity lines. Some people think that these electric lines are dangerous. All the studies I read are inconclusive, but I sure do see many kids who have developmental disabilities in this area. Maybe it is the environment, or maybe it is the culture. Probably it is both.

Collin is a high-energy kid who likes to run and bounce. That is hard to do in their very modest apartment. I do not imagine that the mom can afford a larger apartment on her welfare check. I do not know if she gets child support. I doubt it, somehow.

Bad things seem to happen to Collin’s mom. She has too many medical issues for a person who is only twenty-three years old. She had some suspicious skin lesions removed, but maybe they were only skin tags. Today she told me that she may have lymphoma, or it may just be a swollen lymph node or two. She tends to hear the worst-case scenario, and then she hangs onto it.

Collin’s mother is always enmeshed in the tragedies of her family. Her sister was recently in a car accident, and that caused chaos for Collin's mom. The grandmother needed a place to stay for some reason, so she ended up in the already too-small apartment for a week or so.

Collin supposedly had a cardiac problem a couple months back and the mother did not return my calls for a month. Nothing seems to have come of that problem, but at the time, it was a big deal. Most therapists would have asked for re-assignment because of the family's high cancellation rate, but I do not generally do that. I figured that they were doing their best with the resources that they had available to them.

Over the course of the last half of a year, I worked with Collin. Now he is able to sit and attend to an age-appropriate activity for a reasonable amount of time. He is able to listen to and follow directions. He is able to tolerate different sensory characteristics of toys that he previously could not tolerate (like the way that they felt to him). His fine motor skills have improved dramatically. I taught the mom strategies for providing him with the deep tactile and proprioceptive sensation that his little body craves, so now he gets hugs instead of crashing into people and furniture. I also taught the mom how to use cognitive and behavioral strategies to help him learn self-regulation of his attention and behavior.

Collin is a child who enjoys routine, structure, and predictability, probably a factor of his limited experience outside of the small apartment that he lives in. Conversely, his tendency to ‘melt down’ in new situations causes the mom to avoid new places, so the problem is self-perpetuating. A few months back I tried to have Collin come to my clinic, which is a bright, open, and busy environment that would have challenged his ability to maintain behavioral control and self-regulation. It would have been a good environment for him to practice these skills in, but the mom’s car would break down, or someone else would be having a catastrophe that needed her attention, so they constantly cancelled his appointments. Then the mom simply requested home visits again, which were more convenient for her.

I taught the mom safe ways to challenge Collin’s limits. We reviewed how to provide positive reinforcement of his behavioral self-control. I also taught her how to use predictability and routine therapeutically when he really needed it. In preparation for his transition out of the early intervention program and into the preschool system, I provided her with self-advocacy materials.

Collin’s needs are ongoing; they will not remediate quickly. Despite Collin’s progress, there is still work to do.

Today, at the end of our session, Collin’s mom asked me if we could review his intervention plan. She told me that she is unsure what the goals are and if we have been doing anything for Collin.
I stared at her blankly, agreeing to review anything she wanted.

Her words stung, even though I should not let them.


Larjmarj said…
I just happened upon your blog by using Google blog search. I am a COTA at a large suburban hospital on the acute care side. I don't know if it's the setting that I am in or if it's true across the board for most OT's but it seems like we have to work twice as hard as other disciplines for just a crumb of respect. Physical Therapists don't seem to have this problem in fact most of my patients refer to me as "the physical therapist" or as "the nurse". After almost six years of trying to educate both physicians and staff I still encounter doctors who write orders for ambulation or are unaware that we actually DO get patients up and out of bed. There are nurses here that are shocked to find out that we actually have degrees to perform OT. Of course there are the families like the one you speak of that fail to see the gains, that only want to know when mom or dad is going to be like they were before they were admitted and don't see the value to self care or ADL's; just as long as their family member can walk. It's a shame that our professional organization (AOTA) doesn't do more to promote our profession to the public and within the healthcare arena. Well...Happy OT month!!!
Karen said…
The ending of your story is like my biggest fear. Ouch.

Sounds like you were doing great things and she just wasn't recognizing them. Not that it helps with the sting. Great post!

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