Health – a Motivation for Transition

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There’s nothing quite like a health crisis to remind us why we are working toward transition for our kids.

On Wednesday, I took Ralph to the ER to have IV fluids administered for acute renal failure (or acute kidney injury).

When I took him to the doctor, he was found to have lost 29 pounds in the space of a month, between doctors’ appointments. The doctor said that sent Ralph for labs, and depending on the results, might send him to the ER for IV fluids.

There was no call, so I hoped/assumed that the tests had been okay. So I went back work for the afternoon and then took Mary to her computer certification class. Shortly after we arrived home after her class, Ralph received a phone call from the doctor telling him to go to the ER because he was in acute renal failure. We spent the next four hours at the ER. The doctor there said that it was kidney injury rather than renal failure, and we were allowed to go home.

Ralph is still very weak and is wondering if he should retire from his physically demanding job. If that happens, we will need to move from our four bedroom house to something smaller with fewer maintenance demands and less cost.  We have been talking about this for over a year, but this event has brought more urgency to the discussion.

Our youngest daughter will probably move away from home within the year. However, because Mary will probably live with us for at least a little while, we need a two bedroom apartment or condo. We could move to a senior apartment complex if Mary were living on her own. We suggested a few weeks ago that she might want to live in the same complex, or if she gets a full time job, maybe in the same condo community. Always, I my urge to take care of her comes to the fore.

But at some point, Mary will need to live independently. Or perhaps with her brother. I’ve known a few people with lower IQs who lived on their own.

Ralph probably will recover fully. However, like many parents of special children, we have to think about the future for our oldest daughter. A friend at work said to me, “Why are you so concerned about Mary living on her own? Can’t she live with you?”

“Yes, she can live with us for as long as she can, but eventually, she will need live independently.”

 

 

 

The Deal

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Tonight, Mary reminded me of a deal our family had, which made college possible.

After she finishes her computer certification course, she will have to pass a certification test. Today she sent me a flurry of emails with possible dates and times for the test. All of them involved weekdays and time slots in the middle of the day. I groaned silently at my desk. It would mean taking another day or afternoon off. I am trying to hoard my remaining days off so that I can take the three days before Thanksgiving off and get a week of vacation out of the year. I felt resentful of her use of my paid time off.

Then the guilt set in. I love Mary, I scolded myself. I should be ready to do anything to help her succeed, to help her launch her ship from the harbor. So why was I wrestling with this very important step for her?

Tonight on the way to her class, I asked her about the test and the times she had sent me. I told her that I would need to take a whole day or a half off for the test.

“No,” she said. “You can take me in the morning before work. I’ll stay there the whole day, and you can pick me up.”

“Your Dad could pick you up, you know. His work is over that way.”

She reminded me of our college deal. We drove our kids to college and picked them up every day. Pick up and drop off times had to be scheduled around our work schedule. Very rarely would we pick them up on our lunch hour. So they had to hang around campus all day, find a place to be, find things to do. None of them could drive and/or had a car during their college days.

But Mary had already figured out how she was going to get to the test while respecting my vacation time.

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(This is a picture of Will trudging off to class after being dropped off.)

Learning to Iron

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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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Kilter Family Update

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This is the first fall since 1991 that the Kilter family does not have someone starting school. 23 years since school started for our family. And now, it’s over for us.

Mary is in a 15 week training program, but it started in July and will end in a certification test and possible job in a government call center. And Patty will be a teacher’s assistant at the college she graduated from this last spring. But she is not taking classes;she will be grading tests and taking attendance.

But no one is starting a program leading to a degree this year. No one. It feels foreign. Strange. Odd. I feel at loose ends.

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No school buses. Although the only school buses our kids rode were special education buses. We didn’t have to deal with school bus woes.

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No tuition payments. Why am I not more flush with funds? Still recovering I think.

Wow. Just wow. Looks like this update is mostly about the end of one chapter, and the beginning of several others – the kids are going off in their own directions, and we, Ralph and I, have to think about our next chapter.

In other news, Will made it back from Tennessee just fine.

 

 

Flying Again

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Only 500 miles this time. Tennessee. Last night Will told us that he would be flying to Tennessee for a business meeting next week.

Two years ago, he told us that he was going to fly to California for training. For  a Week. Will had never flown on a commercial jet. And he went alone. (http://annkilter.com/2012/08/20/to-california-and-back-again/). That round trip involved six different planes, a train, and a shuttle bus. I found out later that he made all the reservations himself. I have never flown in a jet either, so I was of little help.

It’s been two years since his last flight. This time, i tell myself I’ll worry less. This time, he’ll be more comfortable, having been through it once. This time, there are no layovers. He’ll be renting a car this time. (Maybe that will convince him to get a newer car ;) ). I’ll still be praying. :)

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