First This... Then That!

First, slap me. Then, poke my eyes out!

If you’re a special needs parent, particularly an autism parent in ABA therapy, you’ll know what I’m talking about just from one sentence with two simple words: “first” and “then”. If you’re really keen, you may even correct me by telling me those two options should probably be reversed as getting ones eyes poked out is probably the less preferred activity - and not a reward for being slapped.

My life has been taken over by symbols, visuals, cards, laminates (not to be confused with “All Access” passes - that was a huge let down and disappointment for me), visual schedules, Velcro and the ever exhausting “First This / Then That” chart.

For those lucky enough to have never heard of this before, the “First This / Then That” chart is a motivational tool for building behavioral momentum through less preferred activities. The Premack principle states that if high-probability behaviors (more desirable behaviors) are made contingent upon lower-probability behaviors (less desirable behaviors), then the lower-probability behaviors are more likely to occur. For example if I offer everyone who reads my blog a banana split from Superior Dairy, my website would crash from everyone reading my blog, because the desirable reward justifies the task required.

I, along with a team of six therapists am currently working with Ethan on compliance and transitions; and this tool is key for that. But it is exhausting; because it is not as easy as it looks or sounds. In his little brain, he doesn’t understand compliance and transition concepts like we do, so he just assumes anything is available to him whenever it is convenient for him. So then to stop him dead in his tracks and force him to complete a task he does not want to do, in order to be “rewarded” with something that he enjoys - like PLAYING!!!, just doesn’t seem right to expect from a two year-old.

I’m still really struggling to understand what we’re doing in sculpting his behaviour and personality - especially considering he’s only two years old! Why don’t “normal kids” have to use a “First/Then” chart? (Why don’t some adults have to use a “First/Then” chart?) But why can’t we let him be a kid?!? He is brilliant, intelligent, spontaneous and so playful and vibrant for his age, yet he continually gets hung up on these two issues: compliance and transitions.

First, we over schedule him. Then, we wonder where we went wrong.

I’ve watched him fall apart in the past few months under the pressure of the daily therapy sessions he’s in and I don’t understand why we’re pushing him so much. Now, to be completely transparent here, I am the first to admit and inform you that he has vicious temper tantrums that are inexcusable, but are we certain that a “First/Then” chart is going to correct this?

And don’t get me started on the (expletive) visual schedules. Once again I want to admit immediately that I have been surprised and amazed at how Ethan has responded to it. However, am I the only one questioning the end results here?!? If he becomes completely reliant on a symbol-based, Velcro-attached, predetermined visual schedule, then where do I inject spontaneity into his life, which as I mentioned above is a characteristic I’ve observed in him that I love!!!

First, congrats on your twins. Then, good luck on figuring out how to care for them.

I know I am still such a young baby in the special needs community. I’m literally only months into this lifelong journey. But my mind is racing with questions. I’m desperately trying to figure out the why’s and how’s and when’s of this new life my kids are going to have. Today I sat in an executive board room with a huge oval table, and all of Ethan (and Madison’s) therapists were seated around the table discussing behavioral plans, milestones, goals and strategies. It was just another day in the life of a special needs parent. But at my core, I'm destroyed by all of this. This is not what the picture on the cover of the parenting manual portrayed life to be life. I so desperately want “normal”, whatever the hell normal even is anymore. And it kills me that with each passing day, with each new visual schedules with every “First This/Then That” chart, I watch “normal” fade further and further away in the rear-view mirror.