“Come on buddy, you can do it” says our Registered Behavior Technician in-training (RBT), as he gestures back to the picture schedule Justin is using as a visual cue to regain some lost independence skills with showering. Slowly, my son looks at him, then looks at me. He grins, then reaches for the shampoo.
Playing us, and flirting simultaneously. Bravo son.
Ten months ago I began the process with Performcare to get in-home ABA help with my then nineteen-year-old child, who had lost some daily living skills and chore proficiency since Covid. Truly, it was my fault. He had some measure of independence going into the pandemic, but teaching him during Covid and frankly just surviving that mess took a lot out of me, and I ended up doing things for him more often than I should instead of letting him do for himself. In the past his school sent BCBAs to make house calls, but that has ended since the pandemic. I have discovered at my age I am a “visual girl”, and instructions via email or zoom no longer cut it. So I bit the bullet and went through Performcare, as I did not relish trying to find an agency on my own and having to deal with insurance. Plus, we’d only ever used them for respite, and I wanted to see what they could offer me.
It ended up being a lot of work and a very intense process, but worth it. I was assigned a coordinator who made many required house and phone calls, but who immediately found an agency and initiated the entire process for me. She also simultaneously connected me with a colleague who literally walked me through the entire process for applying for the DDD for Justin, including reviewing all my documents and submitting them for me (I had to find the original document saying he had autism from Kennedy Krieger from 2004, please!), which made the entire thing worthwhile even if the ABA portion had not worked out.
But the beauty of it is, it has.
Finally, after a lengthy review by our insurance company and a search for a BCBA and an RBT, about eight months after I’d made that initial phone call I finally had both professionals in my home. The RBT comes six hours a week, the BCBA two. Justin has made great strides in his daily living skills, and we will be attempting chores next. This week our BCBA had a great zoom call with Justin’s teachers, principal, and BCBA so that they were all on the same page, and our BCBA said it was invaluable and would be very helpful in helping her determine the direction of his instruction.
I love when people work together.
The truth is I put Justin’s skills on the back burner to deal with some other pressing issues chez McCafferty, but knowing he’d age out of Performcare next year and not knowing if the DDD would help me with this process I am so glad I started this odyssey. I am always conscious of the fact that one day Justin will no longer live with us, and one day both his parents will be gone and unable to advocate for him. My goal is to make him as independent as possible both for his sense of pride and accomplishment, but mostly to make it as simple as possible to care for him.
I want his caretakers to think of him as the “easy one.”
So, if things have slipped since Covid or just recently, consider making that call. There were so many unseen benefits that outweighed the time put in, and I am so grateful I began the process.
Last night, my son did over half of the tasks required for brushing his teeth independently.
Tomorrow, the sky’s the limit.
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