I haven’t been writing as much lately or going to meetings. It’s hard to find the time when somebody needs you.
Last month, Mary, my 27-year-old daughter with autism, mentioned she was feeling lonely, bored, and discouraged about her job prospects (It has been 3 years since graduation without landing a full time or half time job in her field). My mother instinct revved up and I sprung into action or inaction, that is. So I have dropped some of my writing, quilting, and scrapbooking nights in order to spend some time with her after work watching The Voice, and American Idol. We’ve gone out from breakfast on some Saturdays.
When my children were young, before we knew about the diagnosis of autism, I thought by this time in my life, my children would be out on their own. Not that they wouldn’t need me anymore, just that their need for my help would diminish and our relationship would change. After the diagnosis, I realized that my plans for my retirement would need some adjustment. I might be caring for one or more of my children for the rest of my life.
We began a life filled with therapy, IEP meetings, medication decisions, searching for answers, repeating the same instructions and promptings to our children, going to conferences, etc. As those of you who have read this blog for any length of time know, our children have made remarkable progress.
Then, when Mary, our most impaired child, graduated from college, I thought I might have some time after all, to pursue my own hobbies and develop more friendships with other adults my age. When my siblings and I left home, my parents enjoyed spending more time with people their own age, playing cards, going out to eat, taking long trips and vacations.
Despite his diagnosis with autism, Will has now lived in his own apartment for almost two years. He has a good job with a large corporation. Patty, Mary’s younger sister, is about to graduate from college, and in a year or two expects to move away and attend graduate school. Her mentoring professor has called her one of his most brilliant students, which embarrasses Patty.
But Mary works one day a week at the homeless shelter, for which I am grateful. Other than that, she is home with the dog, five cats and her computer. Her sister attends school five days a week. Her father and I work full time.
I am struggling with my own reaction to this turn of events, wondering why I feel so selfish and trapped. When I think about going on a long vacation to Washington DC or Mt. Rushmore, I think about getting Mary a ticket so she can come with us. She would be interested in a trip to those locations. I would like to go to a week-long writers conference in another city. I think my husband would enjoy going with me. But Mary is not interested in writing. Therefore, my angst.
Then I read this wonderful blog post from a young mother of three young children, struggling with her desire to write and her responsibility to her children.
And my struggle came into focus. I am not free to do what I want. When I had young children, I had these same thoughts. However, like many parents of adult children with disabilities, the future is here and the plan to resume my young dream of writing the great American novel is still on hold.
When our kids were young, we struggled with isolation. We weren’t doing the same activities with our kids that other parents were doing. Instead of little league and girl scouts, we took our kids to therapy. Senior class trips were not an option for our kids because they would have needed their own chaperone, and the spots were limited to other sponsors because our kids would have needed more attention, more watching. It wasn’t worth the fight. The road less traveled meant isolation by default.
Wondering what to do about this has been waking me up at night. As older adults, we are battling isolation both for ourselves and for our Mary. One of my reasons for encouraging Mary to attend college was that “at least she would have something to do.” Then college ended.
The search for work has been ongoing. Mary is hindered by her inability to drive and her autism. Even though she dresses well and has a good resume, she can’t find competitive employment. I suspect it is her autism showing. If she says up front that she has autism, interviewers will politely dismiss her as soon as possible. If she stays quiet regarding her disability, interviewers still know something is not quite right, though they might suspect mild cerebral palsy. Either way, there has been no job. She is beginning to be willing to do anything (but not able due to her physical disability).
Mary will be 28 this summer. I think about her at 30, 40, 50…. I just turned 55 and Ralph is 62. We take her to church with us where she has a very good Sunday School class with people her own age. Someday we won’t be able to take her. Church is seven miles away and there is no bus to church. We won’t always be around to take her to church, plays, concerts, and vacations. She will have to find her own way.
My idea of a successful launch for her is to earn her own living, have an apartment, along with social activities, and her own church. I don’t know if this will be possible for her. If she always lives with someone in the family, maybe that is best. It is a hedge against complete isolation. Not what she wants, but maybe she can find contentment. Maybe I can find contentment. I want to make sure she is taken care of, at the least.
The apostle Paul wrote to Timothy in the first century, “but godliness with contentment is great gain.” (I Timothy 6:6).
And I turn to God for wisdom. The apostle James wrote, “5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.” (James 1:5). I have come to God many times asking for wisdom regarding my children…and He has met my needs many times.
This is a heavy topic, but isolation is a common problem for individuals with disabilities and those who care for them. I am praying that Mary will come up with some of her own ideas.