Getting my son on the spectrum into his new routine wasn't easy

This blog post is by Laurie Rubin-Haber. Laurie worked as a manager of international sales in the publishing industry for almost 30 years. She retired from publishing to become a special needs advocate, an officer of the Center for Developmental Disabilities Family Association, and to pursue a labor of love: Raising Ross. Laurie lives in Great Neck, New York with her husband Donald and two sons, Ross and Adam.

Life is filled with transitions…coupled with fear, mingled with hope, and seasoned with a tinge of sadness. As parents of sons and daughters on the spectrum, we know how such changes affect our children; new programs, new therapists, new staff members, new bus drivers, new classmates…in fact, almost anything new upsets their sense of well-being in ways that we cannot really understand. Yet, despite our inability to step inside their heads, we still “get it” because we’ve been through it all with them.

I am fortunate to have met strangers who also “get it.” They are the “Angels in our Midst,” those wonderful people who float in and out of our lives when we need them the most. When my son Ross turned 21 (the year of reckoning for those who live in the special-needs world), my emotions were running high. Having endured multiple transitions with him, including changes of programs, teachers, caretakers, and bus drivers, I knew that this year would be the biggie! Ross had been smoothly (for him) coasting along since he was 8 years old, safe and secure in a familiar place with very few traumatic changes.

He must have detected my mood – our kids have that sixth sense – because he soon assimilated my tense anxiety. I instinctively knew that I needed an angel to guide us safely down this next rabbit-hole; I turned to Mary, his compassionate and creative teacher. Ross had to be interviewed at this adult day-hab program – a program I had decided upon after months of searching. It had to be a place that would successfully deal with his behaviors - a place he would be happy in – but how was he ever going to attend without that required first step?

Mary devised a plan: she took Ross and his class on a day trip to his new program. He willingly walked inside, had his interview without realizing it, and was accepted into what I hoped would be his permanent program and his last major transition.  Mary went even further; she photographed the facility and staff, placing them into a laminated book for Ross to prepare him for the next hurdle – his actual first day there.

I wish I could say Ross cooperated with our hopes and dreams for him that day. The first sign of trouble was when a dull gray van, not a bright yellow school bus, arrived to pick him up. Despite my having shown him photos of the van and its driver for weeks, Ross was having no part of it. Seeing things in a small photo album and having it actually appear are two entirely different things! So I gave in because, as we all know, you learn to choose your battles.  I piled all 210 pounds of him into my car and off we went to begin the next chapter. I was determined not to lose this fight because if I did, Ross would become the ultimate couch potato – lazing about at home, bored out of his mind with nowhere to go…no plan, no goals, no life.

That image pierced my brain as I drove him there on that sweltering day. We pulled up to the entrance with Ross screaming inside the car. Of course, he refused to get out even though he was simmering in that back seat. I strode into the program on a mission. I would not leave until they got him out of my car, into the building, and onto his new adult life. (Adult…so difficult to wrap my head around that word and its connection to my son.) I knew that if I succumbed to his wishes then, as much as I wanted to, Ross would never return.  I was having none of that. We had both worked too long and too hard to throw it all away now.

After ninety minutes, the staff was able to bring Ross into the building. I drove away, filled with fear and guilt. Would he think I had abandoned him there? Would he trust me in the future? The director called later to report that Ross had calmed down. All was well again in the world and it has been, for the most part, ever since. 

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