Tag Archives: growing up

Getting Used to It…

31 Monday Jul 2017

Posted by in Asperger's syndrome, Autism, Independence

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“I’m going out with work friends after work. They will bring me back to work so you can pick me up.” Marie’s text message on Friday afternoon to Ralph and I.

I paused before replying.  Not asking us. Just informing us.

Marie is the oldest and last of our children to move toward independence. Both Will and Patty are living together in another city. In the first part of 2016, we strongly urged Marie to move out of our house and find an apartment or a condo. We looked up apartment complexes and visited several. Ralph met a real estate agent/nurse at his cardiac rehab program and Marie and I looked at condos with her. Twice we were at the stage of signing papers; one to buy a one bedroom condo, one to rent an apartment. Only to back away at the last moment.

We went to Ohio for a weekend to pick up Patty from  grad school, leaving Marie at home alone. Marie cannot drive and had no friends that we knew of to hang around with. She was lonely and bored. After we got back, she informed us that she did not want to live alone. She then went up to her room and used half of the money she had saved for the down payment on a condo to pay off some of her student loans.

So much for our efforts to push her toward independence.

Then Ralph was diagnosed with bone marrow cancer in June. Our doctor made an appointment for him to be evaluated by a bone marrow transplant team in July.

I realized that we had to move out of our 100 year old house due to his immune deficiency, especially if he was going to get a bone marrow transplant.

To be honest, I had long talked about moving. I felt overwhelmed by all the stuff in our house, by the maintenance work that we could not keep up with, by the outside chores. Ralph had been ill since the fall of 2014. When I talked about moving, he said, “We can’t move until I have fixed it up.” But he wasn’t strong enough to do the work. And I didn’t have the time or the skill.

So I suggested helping Marie with a down payment on a condo, and having her get a mortgage with her job and her stellar credit. She had savings and no debt except her remaining student loan payments. And I believe God prepared this condo for this situation in our lives. This was the only property we looked at. We took a tour on July 3, 2016. Marie signed the mortgage on August 11, 2016. We moved in on August 20.

Instead of Marie living with us in our house, we are now living with Marie in her condo.

So yesterday, she let us know she was going out after work with Friends. With people we don’t know. Friends she had made at the job that God supplied. The first time she has ever done this alone. We have always supervised her outings or made sure she was with people that we knew and trusted. For me, it was almost as hard as the day that Will got on a plane by himself and flew to California for a week. I was nervous. But I couldn’t say no.

At eight, I texted her to see how it was going.

“We are walking around Rockford. We are having a good time,” she replied.

As the evening wore on, I said to Ralph, “You can start texting her at 10 to see when she is coming home.”

At 10, Ralph didn’t get any response. Texting or calling.

I messaged my younger daughter, Patty – Well, Marie is out with friends. I have never met these friends.

Patty – So? You don’t get to be protective like that forever. Let it go.

I texted Marie, and asked her to please call me. She called me at 11:00 and said she was on her way. I could hear the voice of the young man who was bringing her back home in the car. I asked if he was going to bring her home.

When she came home, we didn’t say anything about our concerns. We asked her what she did and did she have a good time. She had a wonderful time. They laughed a lot. Went to a restaurant that several different kinds of locally brewed root beers. They ate fried mushrooms, fried pickles, and chili dogs. We did mention that we would like it in the future if when she went out with her friends to have them drop her off at the condo. That way we wouldn’t have to go out in our car to get her late at night.

Patty is right. We can’t protect her forever. She will have a life of her own even while we live together. 80% of the employees at her job are required to have some sort of disability or health condition that is a barrier to employment. The young man who organized this outing is about 28 and just got his license last year. Four of them went out. Two young women and two young men. It’s normal for some of them to never be able to drive. And they took care of each other.

I’m not sure, but this might have been a date.

I guess I’ll have to get used to it…

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Home Sweet Homes

17 Saturday Jan 2015

Posted by in Achievement, Asperger's syndrome, Autism

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“I will just live in a box, then,” said Will when he was eight. This was in response to my insistence that he do a better job sweeping the floor. I had said that learning to do housework would prepare him for living in his own apartment when he grew up.

My boy is planning to be a homeless person, I thought.

Flash forward 16 years, and Will moved into his own apartment.

Another three years and…

Will is in the process of buying his first house. He is very excited. So are we.

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I can visualize little ones coming down these stairs in his house on Christmas morning. Some day.

The house has passed inspection and the appraisal. It’s just a matter of time before he signs the papers.

He began by looking for a two bedroom apartment. Then someone from his church suggested that he buy their house, so they could move to Florida. The house has been flipped. New wiring, new roof, new furnace, and all the appliances.

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When he was eight, he had therapy at school, at home, and with outside therapists for his autism. Now he has a good job and is buying a house. Amazing!

I can’t wait to sit outside on his back deck with a cup of coffee.

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Learning to Iron

14 Sunday Sep 2014

Posted by in Autism

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”A ship is safest in the harbor, but that is not what ships are built for.”

~John Shedd

All of a sudden, Will has left the safety of the family harbor. His ship has launched and he has moved into his own apartment in another city seventy miles away. His job is the beginning of his true career. He worked hard for this chance. All the years of therapy, special services, study and encouragement have resulted in this giant step toward independence, despite the giant challenge of autism.

During the interview with a huge corporation, they told him that if he were hired, he would start on April 16. On April 12, his father and I suggested that he probably wasn’t going to get the job. Whew! We had dodged that bullet, we thought. He would not be moving away from home. The very next day, the human resources department contacted him, offering him a position as an entry-level web developer. He would start on April 25. He was excited and nervous.

We were happy for him and dreadfully nervous. But we had stepped boldly forth into the risk that he might move away. We were the ones who encouraged him to go to the interview, and his dad actually drove him seventy miles for the interview, 140 miles round trip.

Anxiety plagued me. Had I prepared him enough? Had I taught him what he needed to know to live on his own, to navigate life outside the harbor? I wouldn’t have many more chances to teach him what he needed to know.

A week after we moved him, his sister Mary and I went to visit him for the weekend and bring another load of his furniture and possessions. I wanted to see how he was doing on his own. His apartment was still very sparsely furnished, with an air mattress in his bedroom and lawn chairs in the living room. He was camping in his own apartment. He would buy real furniture when he could afford it.

I got another chance to teach Will how to grab his dress clothes out of the dryer so that he would not have to iron them. However the clothes didn’t come out of the apartment dryers as wrinkle free as I had hoped. So we went shopping and he bought an ironing board and an iron.

Then we went back to his apartment and took all of his dress clothes out of the closet. I gave him and Mary ironing lessons. At home, my method of grabbing clothes quickly out of the dryer is an effective wrinkle deterrent, so my ironing lessons in the past were half hearted. But this time, both my children paid close attention. Both Will and Mary picked it up quickly. Will told me he has ironed his clothes every week since.

I am shocked that this is so hard. Letting go is harder than I thought it would be, but other parents, parents of typical kids, tell me that they found it difficult as well. When my kids were little, they had separation anxiety. Now I am feeling that anxiety on the other end of parenthood.

My chances to prepare my son for his future are diminishing quickly. He is learning his own lessons, and he is enjoying it for the most part. I love the John Shedd quote: “A ship is safest in the harbor, but that is not what ships are built for.” I have this saying in the signature line of my e-mails both at home and at work, to remind myself daily that my kids cannot stay in the harbor. In the end, keeping them in the harbor is not safe.

~Ann Kilter

This story was published in Chicken Soup for the Soul – Raising Kids on the Spectrum. This book is an excellent resource for those who want to understand what it is like to raise an autistic child, and for those who are in the fray. This story, the story of Will moving to his first apartment, is the 101st story out of 101 stories.

Will has been living in his own apartment for 2 1/2 years now. He has learned how to grab his clothes out of the dryer so he doesn’t have to iron them. I guess ironing is not that much fun. 🙂

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Handles, Wings, and the Special Needs Child.

29 Saturday Mar 2014

Posted by in Transition issues

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Transition is the long term process of changing handles to wings for our children. Set this expectation in your mind: it will take longer, with many fits and starts. I recommend the post below by my writer, friend, G. Allen Barrett, poet, writer, and father. I so enjoy his sway with words. In each of our families, we share the experience of parenting special needs children.

G. Allen Barrett Poet. Writer.

4:40a.m. I heard “handles or wings.” Not audibly, but thoughts rattled and I carried my journal to the bathroom and wrote it down. My friend Peter Dehaan commented about my blog post on writing, the one about keeping paper and pen available while sleeping. He mentioned that sometimes a thought would arrive in the middle of the night and when he revisited it the next morning he was clueless as to why he wrote it down.

I imagined an angel with handles where wings would usually be found. Maybe my guardian angel could be easily moved. Just grab ahold matie, and take control.

Or maybe the angel is like a G.I. Joe I had when I was a child, the handles were where I would attach a parachute and throw him off the garage roof.

Maybe when God created angels he gave them a choice at the end of the…

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Battling Isolation

05 Wednesday Mar 2014

Posted by in Asperger's syndrome, Autism, diagnosis, Disability, high functioning autism, Independence, Transition issues

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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.

http://yourbestnestindy.com/2014/02/27/mommy-somebody-needs-you/

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.

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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.