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.
Thank you for sharing your journey. It may not be easy but inspiring nonetheless. Our kids will always be our kids and we will always worry, especially when different needs are involved.
My heart and prayers are with you, choices are never easy, you owe it to yourself, to make time for the writer’s conference or some other “outing” that will allow YOU to rebuild, regenerate and recharge-sending love and energy your way
Especially Made said:
My heart goes out to you. I have fears of the future for my son, who is only 8. Still young, but my window of time with him is getting smaller and smaller. Then, what? God knows, and I must rest in that. I’m praying God would give you wisdom and peace.
You are an incredible woman. The part about watching American Idol with your daughter made me smile because my mother does that sometimes with me. You will be in my prayers. Thank you for all you have done for your daughter. It is so touching!
My daughter’s future is always on my mind. A lot of people have told me that she will live with her dad and I the rest of her life. My goal is for her to be independent – living in an apartment or group home and working. Of course this is an uphill battle. I pray that God give you wisdom and provide your daughter a place to work at.
Ann Kilter said:
Thank you for praying for my daughter. And I for you. I have the same goal as you, I am just further along on the path. As independent as reasonable.
Deb Kamphaus said:
I also still have all 3 at home for various reasons. It is hard when our life is not even close to what we thought of. Living in our own little world. Wondering if You will ever have them all out. I may get 2 out someday but the oldest will always be with us.
Ann Kilter said:
I have said the same thing about my daughter, Mary. She is my oldest. Can’t drive. Walks a little off. Has learning disabilities. Has autism. So many strikes against her. Yet I have known people with far fewer capabilities who are living on their own. Sometimes a group home is best. Some day, if things go as they normally do, our children will live without us, and some provision must be made. In the meantime, though, I will not have the same retirement that my friends have.
Wonderful, you addressed this.