Becoming the mother of a high-maintenance, high-energy, hyperactive autistic child has changed me forever. Some changes are positive, and some negative. It has definitely altered me as a person and redefined the roles my husband and I play in this family. Raising Dovi is an extremely stressful endeavor and sometimes I wonder if I'll buckle under the weight. When he is home, I am always on edge, trying to keep one step ahead of him. When he's away on Respite weekends, I miss him and feel guilty and feel very sad that we even have to send him to Respite weekends. But of course, I also breathe a little and destress from the constant heavy burden that keeping Dovi safe, healthy and happy entails.
Despite having so much help and so many resources in place, often the carefully woven net falls apart. Our two weekend respite providers both had no vacancies for the upcoming month and it left me scrambling to find additional help in the form of community volunteers and res hab girls. Then there was a snafu with his Sunday program; the two community programs both wanted the other one to take Dovi for next year, leaving me in tears and panic about the many long Sundays of the 2013-2014 year. Additionally I'm kind of stressed about filling the various holes that will crop up this summer with many of the girls going away for the summer or taking on summer jobs. So being Dovi's unpaid Service Coordinator and Advocate is one of the many hats I have to wear from time to time.
Another of the many hats I had to don in the past two years is the one of Detective. With a nonverbal child who displays bizarre behaviors, life is always a guessing game. Why is he behaving this way? Why is he crying? What does he want now? Whenever Dovi is on a new medication, it's a guessing game to figure out if his behavioral changes are medication related, autism-related, or somthing-else-related. Meeting his sensory needs is also a constant guessing game. Dovi is a whirlwind of motion at all times; he'll jump onto tables and couches and counters, spill stuff and smear it everywhere. You need the energy of a teenager to keep up with him, a lot more than that of a tired 30-something mother.