Clearly one of the most agonizing decisions a parent has to make is when and how to place their child with autism (or any other significant disability). This morning, we got a call from a distressed single parent, overwhelmed by the needs of her adult daughter, Jane. Over the years, Jane's mom has carefully explored the options for her daughter, but even in very difficult times, still decided to keep her daughter at home. Like so many other parents, she has concerns about her daughter's safety. She also knows no one will care for Jane in the same way she does. Who will talk with Jane when she is in a bad mood and not get frustrated with her? Who will help Jane get through her sometimes difficult behavioral periods that can last days at a time? Will her new caretakers enjoy Jane's quirky humor and delight in her simple pleasures? This is the stuff of nightmares for many parents!
Earlier this year, one of our older clients (43 years) was placed in a group home by his widowed mom, again after long and careful consideration on her part. Always anxious in the best of times, Hank was undone by the thought of change. As he is always quite verbal and worried about any change, Hank would say heartrending things like "my mother doesn't love me anymore" or "I'll never see her again." Needless to say, this didn't help his distraught mother one bit, as she already had tremendous guilt in placing him. So, it took much reassurance to both parent and child that both would survive. And we had to assure the mom we would carefully monitor Hank's demeanor, dress, food - all those things that might indicate any issues. She had many tearful calls to us after placing him, and at times, vacillated. But when provided support for her decision and assurance that our watchful eyes would keep track of how things were for Hank, both he and his mom have settled into a contented acceptance of their situations.
But back to Jane and her mom. Although not the ideal way to make such a big decision, Jane's mom was feeling particularly desperate this morning, and called her long time social worker as well as our staff, and said it had to happen today. She and her daughter had come to a point where living together was beyond what the mom could do. Amazingly enough, the social worker knew of an opening in an appropriate home, and arranged for Jane to go there today. Jane's mom is bringing her things tot he group home and one of our directors particularly close to Jane has accompanied Jane to this new place. At first when Jane heard about this, she was delighted, mostly because she knew she would get to see a golden retriever of the social worker, which she loves. But the dog won't be staying at the house, so that is when we will have an idea if this will just be for the weekend or beyond. Not an easy day for either Jane or her mom, and not going to be an easy weekend.
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Jennifer Sullivan, Executive Director
Jennifer Sullivan began teaching at Morgan Autism Center in 1977, first as a teacher, then Assistant Program Director, then, in 2000, she became Executive Director. She was instrumental in developing the Adult Program for the Morgan Autism Center and has expanded the school program to include outreach and consultation opportunities with other community resources, school districts, and agencies,. Ms. Sullivan is also an adjunct professor at Santa Clara University, a member of SCU’s Autism Advisory Board, and San Jose Unified School District’s Autism Advisory Committee.
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While it is appropriate for parents to worry about their children, it is also appropriate for children to stand on their own - to seperate from their parents. Too little consideration is given to the inevitable - we parents don't live forever. There are many, many things that should be done - for example, over-emphasis on compliance puts people at risk for abuse. Learning to make choices should be part of every planning... etc. Your story portrays a parent and child who seemingly had no coherent preperation for this transition... which is cruel, and unrealistic. I am a parent. My son is in a group home. This can be done badly, or mindfully - I've experienced both. The system, as it stands, needs overall change - not just for our people with ASD, but for those with developmental disabilities in general - people are living longer; parents are mortal.
ReplyDeleteIt is hard for a mom because you ´t know what to do. But everything can be done normally. Last year I travelled to Argentina with my child that has autism and we spend the nicest time. I got an apartment rental in Buenos Aires for the both of us (it was prepared for his needs) and we had no problems at all!
ReplyDeleteAmy