Answering “So What Do You Do?”

She tells me that her 11-year-old son, who is on the autism spectrum, hits her and laughs. When he watches a DVD he will put his Mario Brothers backpack next to him on the couch and talk to the backpack. He carries it around and hugs it. He dumps all the shampoo down the drain. She tells me that he holds knives to his throat and threatens to kill himself.

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As a Behavior Consultant I go into people’s homes and talk with them about some of the most difficult aspects of their lives. I am part confidant, part counselor, part troubleshooter, part scapegoat. I work with families, foster providers, and agencies. I create and implement behavior supports for people with developmental disabilities, ranging in age from 3 to 72. I use visual supports to provide structure and consistency for those who have great difficulty functioning without it, often resulting in concerning behavior to try to meet their needs, especially if they are not able to communicate through speech.

Here’s a sample of what was on my calendar this past month:

• Write a Functional Assessment for a non-speaking 5-year-old whose grandmother is his primary caregiver
• Via a sign language interpreter, teach sex education to a 23-year-old deaf woman who has Fetal Alcohol Spectrum Disorder (FASD)
• Drive an hour and a half to a different county to work with a 4-year-old girl with Down Syndrome who hits her head on the floor repetitively
• Create social stories and checklists for two different teenagers and three preteens, all having significant challenges with emotional self-regulation
• Develop strategies of positive reinforcement for a ten-year-old boy with FASD who exhibits physical and verbal aggression, property destruction, and other behaviors of concern
• Teach a 2-day workshop on positive behavior supports and protective physical interventions
• Attend a 3-day conference on dual diagnosis – people who have both a developmental disorder and a mental disorder, like my son (who has both autism and bipolar)

It is equally an honor and a challenge. [Troubleshooter.] But sometimes it’s a huge challenge. Some people expect me to have a magic wand. I make a suggestion and they try it once or twice and get frustrated when it “doesn’t work.” [Scapegoat.] Others want to spend the entire hour talking about personal things that have nothing to do with their child. [Confidant.]  Some people cry when they’re describing what they go through and how isolated they feel, and that’s when I look in their eyes and tell them I know it’s hard. [Counselor.]

I didn’t set out to work in this field, in this position. I didn’t want to be this when I grew up. But at different points in my life I wanted to write, I wanted to teach, and I wanted to be a counselor. And because my 21-year-old son has multiple disorders, and because I wanted to support other parents so things could be easier for them than they were for me, after years of writing and volunteering and connecting, this position was offered to me. I am now all those things I wanted to be when I grew up. And I have a really cool response to that cocktail party question.

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She speaks Spanish, and we communicate through an interpreter. I tell her I understand, that my son went through a period of time when he would bang his head on the floor and wanted to “rip the autism out” of his head, as he put it. That I found him one night threatening to hang himself. I ask if she would like my son to come and talk to her son, tell him that he felt the same way but came to terms with it, with being different. She says Yes, tears forming in her eyes. I explain to her that her son views Mario as his friend; my son felt that way about Winnie the Pooh. A squeeze bottle with water and a little dish soap inside solved the shampoo problem. If only they (the problems) were all that easy to solve.