Over a decade ago, I had a plan. It was a modest plan, nothing fancy. It included two kids two years apart, a career in education culminating as an administrator, and residing permanently in the Washington DC area. I thought my plan included obtainable goals- I was relatively young when I began trying to have kids, I had an M.Ed in administration, and I worked hard at being a teacher. I thought my life trajectory was all sewn up. My dreams however did not include multiple miscarriages, two years of trying to conceive, and then an autism diagnosis seventeen months after my much wished-for baby arrived.
Best laid plans, right?
When my eldest son was diagnosed with moderate to severe autism I realized I had to make some choices. At the time I was halfway into my second year of unpaid leave with Fairfax County Public Schools, and my options were to return that fall to a guaranteed position somewhere in the county, or to quit my job and stay home with Justin. The plan had been to take the two years then return, but even before the autism diagnosis that choice seemed unobtainable. Justin was an extremely difficult baby and toddler. He cried most of the time. There were eating issues, reflux issues. There was an adamant refusal to sleep that only confounded his mother, to whom sleep was priceless. In short, day care was not a possibility for my little dude, and no nanny would have stuck it out. We had no relatives in the area.
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That left me.
To this day I am profoundly grateful we were able to make it on one salary, because I literally don’t know what we would have done for Justin’s care. Plus, all the research suggested that the kids who had at least thirty hours of therapy a week made the most gains, and at the time Early Intervention provided us with at most two hours a week, neither of which addressed the core deficits of autism. I knew my boy needed help, and I knew I would be the one to deliver it to him. We spent thousands of out-of-pocket dollars on an in-home ABA program so myself and our two therapists could be trained, and except for the five hours of therapists we had weekly I delivered the program myself. It was exhausting, and that fatigue was always coupled with the fear I was doing it wrong, that he wouldn’t continue to make strides.
Fortunately, those fears were unfounded. Justin progressed by leaps and bounds.
As Justin neared school age we began to realize that he was a child who did have academic needs, but really needed them served in a one-to-one setting. After meeting with the professionals at FCPS we came to understand that the likelihood that Justin would ever have a one-to-one aide was almost nil, and we began to research other alternatives.
Eventually the logical choice seemed to be returning to New Jersey, where we immediately walked into eighty hours of month of Early Intervention therapy at a fraction of the cost of the eight we received in Virginia, and a child study team who granted us the gift of the one-on-one aide without a fight.
He flourished. He became much more at ease with the world around him. He developed into the kind, affectionate loving soul he is today. And I’m not sure that would have happened without my being open to a Plan B.
Justin is twelve, and will be entering the transition years soon, and I’ve begun to remind myself to be open to an “alternative plan mindset.” This past year I’ve watched several friends deal with their adult autistic children aging out of their respective school systems, and they’ve all taken different routes. Some of them are home with all-day care.
One is in a residential setting. All seem to be thriving, settling into their new routines. And I know I have to remain open to whatever possibilities arise for him, because although I can’t imagine him being happy living apart from us I have to remember that he’s only twelve, that he has nine more years before the academic world closes their doors to him. I cannot even fathom all the ways in which he will change.
And I know that I have changed too, from a woman who clung religiously to her Plan A to a woman willing to look outside of what “should be” to a woman willing to examine “what is.” It hasn’t been an easy shift for me, but it’s one I imagine I’ll make time and time again with both of my kids over the decades to come.
And I have to say, I think I’m finally up to the task.
For more on my family visit my blog at autismmommytherapist.wordpress.com/
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