Autism, Empathy and A Nightmare

“I need someone to get down and dirty with me” I said to the intake coordinator on the other end of the phone. “can you explain a bit more?” she said a bit shocked at my apparent lack of holding back. “well, I don’t want to waste anyone’s time here and I need to see if you are a good fit. I need to know ahead of time that your therapists aren’t afraid of a challenge. I need to know that they aren’t afraid of urinary accidents. I need to know that they wont run at the first inkling of a challenge. I’m hands on and I’m hardcore into this and I need your therapists to be too. If your therapists are like the last ones we had and run then I’ll just as soon do it on my own. He needs help and sometimes that help comes at an uncomfortable cost… are you still in?” A silence came over the phone and I just sat there waiting inutitively for her reply.

“Yes, we are in. I used to be a BT (behavior tech) and I often dealt with those things our therapists here are not afraid to get hands on that’s part of the job”. “Great! because honestly after recent developments and past experiences with ABA I am pretty on the fence about starting back up again. If I’m honest I’m kinda shell shocked from the past company and my faith in this therapy is null if at all”.

Our therapy services ended last monday and the decline continues. The laundry and the urinary accidents. BUT there is something amazing already coming from all of this. I’m finding that I am a very different person than when I came into this last round of therapy. I feel like I am stronger. I feel like I am less nieve. I feel like I am not as afraid to stand up and start a conflict. Even though I am terrified I am not letting that stand in my way. I feel like this last round of kicks in the face from those i trusted has shown me another side of myeslf that I always battled but its been a journey to get here. Let me tell you the past two months have been the hardest to date.

Because of the mounting anger, resentment and fear I began not sleeping again. I was tossing and turning and when i did sleep I would have nightmares so vivid i would wake up (often after only an hour of sleeping) frozen in fear pleading with myself in my mind to remember that “I am safe, I am home, theres no such thing as ghosts”. I have always battled nightmares from the time I was a little girl unil now and they always escalated when i became really anxious or afraid. But last nights’ nightmare was probably one of the worst. It went like this.

It was dark and i was standing at the top of the stairs to our basement I could see this dark shadow like figure at the bottom of the stairs and I stood there as it stood frozen in a threatening stance and i remember thinking in the dream “I will not back down” and just after thinking that to myself in the dream the dark figure rushed at me and i never moved and as it hit my body I woke up.

You are probably wondering how this dream has any part in in this post. Well, lets dive a little deeper.  Freud ascertained in his book Interpretation of dreams that dreams don’t free us from reality but actually bring us back to it. If you follow that theory then one has to assume that dreams have some sort of meaning. Some significance in our subconscious. As I pondered this dream this morning under the guise of the recent happenstances I can only ascertain that that the dark figure was my Sons therapists and the significance of the basement is that this is where we have constructed a room just for ABA which seconds as a gaming room when not in use by our therapists, This is also where aiden has most of his accidents that caused much of the disdain and conflict. Me standing atop the stairs apparently abashed is how I feel toward the conflict. Where before I would have ran or in some way stymied any conflict causing a back and forth of passive aggression which would inevitably end in some sort of blow up anyway I think this dream was my way of showing myself that I was ready to stand against the fear. That I cant let it run me anymore. And I think the significance of me waking up when I did was in some round about way a reassurance that there will always be something there to protect me from the fear If I just stand firm.

So, Back to the autism. What does this mean in the whole scheme of things? It means that I have evolved. It means that metaphorically, in the autism world, I have moved from teenager-dom into adulthood. I have realized that I am in charge of what happens with his therapy. I am the one that needs to write the programs. I am the one that needs to be the boss per se. Things are going to change this time around. I will be reading the therapist to therapist notes daily. I will be composing and implementing the treatment plans with the therapists as buffers only. The BCBA, the head honcho, the one getting paid, will be nothing more than a manager. As much as it pains me to say it ABA can be disparaging if it is not done in a calculated fashion with a hint of humanism in it. My biggest issue with ABA as I have known it is that there is no room for him to have a tough moment. he would yell out or in some way abhor an error correction and instead of sympathising with his apparent disfavor they would say, “do this” and insert some obscure task like clapping his hands as if to distract him from his feeling. This was probably the part I hated the most. At the very least his feelings should have been recognized for the reality that they are. How can we expect these children to empathasize if we cant even accept them where they are? This was always the main reason I never followed the behaviorist school of thought. Sure it has its place but it seems incomplete lacking in emotion and one dimensional in thought which humans are not.

I think whats happening here is that I, as a parent, am realizing that maybe I can do it better. Maybe its a confidence thing. Maybe I’m tired of the disenchantment and the anticlimax that I keep finding in our therapeutic endeavors. Maybe I’m starting to see that most of the growth I have seen in him has come from other avenues. Maybe, therapy isn’t the best thing.

I sat at the laptop this morning constructing another toileting chart and I stopped and cheered multiple times as i navigated Excel for the first time. It wasn’t so much the ideal that my non technological mind was able to construct the table I needed but it was also evidence that I could, in fact, run this program without them. And maybe. That’s all the confidence I need. Lord knows I won’t run… Ever… And even though I’m uneasy about the prospect of failure I know that the only real failure that can come out of this is the failure of not trying.

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Autism, brace yourself because I am coming after you full force and I will not backdown. and to my Aiden, You are allowed to be angry, you are allowed to scream if you have to because I see you in there beyond the data points and the programs.  This is about YOU and I can’t wait to crawl in the trenches with you.

 

“Dreams are often the most profound when they seem the most crazy”

-Sigmund Freud

2 thoughts on “Autism, Empathy and A Nightmare

  1. You are absolutely right, I am so with you. It often feels like the plans are more about the people delivering the service rather than my son. We tried the nice/quiet approach – going along with the plans and it didn’t get our son anywhere. That’s changed now. We got into the trenches with our son for the fight. The Health agencies are now working with us, unfortunately the education side is a real trench fight. A fight we won’t back down on.

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    1. i think therapy is overrated… maybe its because I have worked inpatient psych for 13 years so I kinda know whats going on and can do most of it myself and am pretty much fearless at this point. I dunno. aba seems like a bunch of kids looking for an “easy” paycheck and not really to put the work in. maybe im jaded I dont know. lord knows im burned out

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