Mary’s Wishes


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The receptionist at the law firm where I work told me that she will have no children at home within the next six months. Her daughter with the baby is interviewing for special housing, her son is moving in with friends in May, and her youngest is moving into her own apartment to attend college in August. What a change that will be for her and her husband. The empty nest may come upon Ralph and me sooner than I think. Will is already gone. Patty plans to leave in a year or so after graduation this spring to go on to graduate school. And Mary wishes to leave as well.

On Saturday, Mary went grocery shopping with me. Usually, when I drag one of the girls out to the grocery store, we also go out to eat. I started taking my kids out individually for lunch or breakfast on a rotating basis when they were in their early teens, so that we could talk without the other ones butting in. Both Will and Patty were talkers. At first, getting Mary to carry on a conversation was halting, difficult. She would not look at me. Her voice was so soft, I could barely hear her.

At Steak and Shake, Mary informed me that she was looking forward to moving to her own apartment. I said that she would need an apartment that was within a short distance to a bus stop and shopping. I suggested that she might want to live with her brother, Will. She shook her head. She doesn’t want to live with Will, she wants to do what Will has done, have her own apartment and her own life.

In order to move away, she said she needs to get a steady job. Then she told me that she was going to an interview at Goodwill on Monday. They have a training program for a high tech call center. Surprise! I don’t know if she has the ability to learn C++, but she does keep the computers running around here.

After we came home, I told Ralph what Mary had said. I started looking on the computer at apartments in the area. Talking about where Mary would shop, how she would get around and how she would get to work. He said, “Wait, one step at a time. You never know, she might get married.”

“I can’t wait,” I said. “How will she get groceries, go to the dentist, go to the doctor. We have to think about these things. Plan for her.” But this isn’t my job or my place. I have to let go to the extent that we can.

The truth is, Mary is making plans, taking steps to make her wishes come true. She has been planning for years. Even though she can’t drive, she is going to ride the bus to her interview tomorrow and back. She can get around.

Mary can take care of herself, in many ways better than her brother could when he moved into his apartment. She does laundry, cleans house, and cooks. She has accepted the fact that she cannot drive, so she plans to get around on her own. We have insisted that she try to find a job which is easily reachable by bus. As tempting as it is to say we would drive her to job inaccessible by bus, her independence is dependent on the bus.

Living Room

Above is a picture of Will’s apartment after he moved in. To say his furniture was sparse is an understatement. But Mary has her own bed, a recliner, desk, office chair, TV, bookcases. I would encourage her to buy dressers, lamps, etc.

Mary is vulnerable, and that is one of my fears. But I must let her go at some point, whether it is to supported living or totally independent living.

A year or two ago, I dreamed that Mary had moved into her own apartment, and I walked through her apartment looking at her cupboards to make sure she had enough food. I opened the refrigerator door to peak in, to see how the food supply was. I went through the same process with Will after he moved. After a while, I stopped prying into his cupboards, except now to ask where he keeps the sugar or coffee filters.

My wishes are that she would be safe, and able to take care of herself. Mary’s wishes are to be independent, have a job, make her own life. I need to step back and let her live her life. To leave the harbor, so to speak. That is what ships are for, even for Mary.

World Autism Day – Going Beyond Awareness


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Tuesday was World Autism Awareness Day. The color is blue.

Do more than be aware.

Hire a person with autism.

Befriend a person with autism. Will’s first friend in fifth grade meant the world to him, and to us. Many befriended him in high school and in the church youth group. Mary had more difficulty making friends.

Befriend their parents; having a child with autism can be very isolating. Befriend their siblings.

Support autism research and autism support groups.

Provide respite if you can, or a meal. Raising children with autism is exhausting and at times, lonely.

Maybe they ought to change the name to World Autism ACTION day.

Courage is Contagious


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Some days, some months, some years, it takes courage to get out of bed and do the job of raising our children with special needs.

The Merriam Webster Dictionary defines courage as “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.”

That pretty much sums it up.

Some days it takes courage just to get dressed, get our kids dressed, and get everyone where they need to go. Sometimes it takes courage to face special education committees to advocate for your child. Sometimes takes courage to advocate for our kids to the youth group leader, Sunday school teachers, summer camp leaders, neighbors, family, school, etc. Etc. Etc.

Sometimes it takes courage when a day has been a complete and utter mess, exhausting everyone, to get up the next day and start again.

But, when you live your life with courage, others are encouraged.

When my children were young, sometimes tears would slip down my cheeks when discussing my children’s difficulties. I am sometimes an overly emotional person. I can’t always keep smiling in the face of difficulties. Actually, I can rarely keep smiling in the face of difficulties. That’s not me. During these meetings sometimes my kids’ teacher consultant or social worker would tell me that they would bring me up as an example to other parents. I didn’t really believe them. I thought they were just saying that because of their discomfort with my emotions.

I was reminded of those meetings when I visited with my parents at my brother’s house this weekend. My sister also showed up from the other side of the state. She is a nurse, with wildly varying hours, so it is not easy to see her, or even talk to her on the phone these days. (She ended up having to leave early because she is on call for two weeks). While we were talking about her youngest son, she mentioned that she knew how to advocate for him because of our many conversations when my kids were young and watching how I handled my kids. She told me that he has some autistic features. “He has autism?” I said. She nodded. Thinking back on it, I can see it in him. He is in his third year of college planning to go into computer programming. He is on the high end of the spectrum, so they didn’t realize what they were dealing with until much later in his education.

My courage encouraged her. Your courage will encourage others…even if you can’t see how.



Handles, Wings, and the Special Needs Child.


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Ann Kilter:

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.

Originally posted on 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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What would they do with my stuff?


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Downsizing in the next few years is a precious gift Ralph and I can give to our children.

Our house is 1600 square feet, 2400 square feet if we count the mostly unfinished basement. We are not hoarders, but we have accumulated a lot of stuff over the last 19 years in this house, 28 years as a married couple.

My parents are in the process of moving back to our state from Florida to live with my brother. A trailer of their possessions came up north with my mother in November. My siblings flew down to Florida today to help my father pack their remaining stuff into a moving truck, and drive back here with him. My parents already had three yard sales to reduce moving expenses.

We have spent so much effort thinking about our children’s future that we have forgotten to plan for our future as our lives wind down. The thought of Mary, Will, and Patty being faced with what to do with our earthly possessions is deeply disturbing. I imagine them bewildered. The fact that Mary and Will are on the autistic spectrum complicates the situation. Better to give it away before then, while we still have the strength and will.

Now is the time to get rid of craft items I haven’t even looked at in five years. Now is the time to shred documents we no longer need. Now is the time to go through the drawers and our many built-in cupboards. This summer we plan to sell our pop-up camper, which hasn’t been out of the garage in ten years.

I’ve already taken two trunk loads of stuff to Goodwill. Thanks to Facebook, I found “Becoming Minimalist” a blog by Joshua Becker about living with fewer possessions, and finding more time and money to develop friendships, travel, be with family. Mr. Becker is not writing about becoming a tightwad, but about setting priorities in life. I am following his Facebook page so that I am reminded on a regular basis to keep going.

We could comfortably live in 800 square feet – a two bedroom house, condo, or apartment. A two bedroom space would have a place for Mary if she continues to live with us. Starting the process now, while we are still healthy, will prepare us for downsizing. If we wait, getting rid of the jetsam and flotsam of our lives will be overwhelming.

yard sale

Think about it.


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