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Tag Archives: disability

What would they do with my stuff?

14 Friday Mar 2014

Posted by Ann Kilter in Asperger's syndrome, Autism, Transition issues

≈ 19 Comments

Tags

asperger's, autism, disability, downsize, downsizing, minimalist

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. http://www.becomingminimalist.com/15-reasons-i-think-you-should-blog/

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.

Battling Isolation

05 Wednesday Mar 2014

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

≈ 9 Comments

Tags

autism, disability, finding work, friendship, growing up, isolation, Loneliness, making friends

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.

images

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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.

Potty training by Book

16 Saturday Nov 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, Disability, high functioning autism, Independence

≈ 2 Comments

Tags

asperger's, autism, developmental disability, disability, Potty training

When Mary went to a pre-primary impaired class, she was still having pee and poop accidents. As many of you know, she is autistic and also had mild brain damage at birth.We didn’t realize she had developmental disabilities at the time, so I thought I was an awful parent because I was not successful in one of the major tasks of parenting.

Our (un)helpful doctor suggested she would be potty trained by college…And he was right. She was potty trained by the time she went to (and graduated from) college.

Two things helped us:
1) We stumbled upon something that motivated her. She was very excited by the task of dropping pennies into a giant plastic bear bank that my father found at a garage sale. If you are having similar issues, may something serendipitously occur to you.  Praise, stickers, celebrations, etc., were useless.
2) Motor training, which we found in an old book, Toilet Training Without Tears, was helpful. It is still available on Amazon. http://www.amazon.com/Toilet-Training-Without-Charles-Schaefer/dp/0451192125. This book listed several methods. The one that was effective involved motor training. Every time Mary had an accident, we would go through all the motions of going potty. Go to the bathroom, pull down your pants, sit on the commode (by the time she was five, she was big enough), pull up your pants, etc. 10 times, each time. It took up a lot of my time, but after a couple of weeks, she was not happy about having to spend so much of her play time going through the motions. And each time she was successful, well, there were five pennies for the bear bank.

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Unspoken Rules

17 Tuesday Sep 2013

Posted by Ann Kilter in Asperger's syndrome, Autism, Disability, high functioning autism

≈ 4 Comments

Tags

asperger's, autism, disability, social skills, unspoken rules

One of the hallmarks of autism is social impairment. The unspoken rules of social engagement were very difficult for Will to understand, and to implement. When is the right time to start talking and when is the right time to stop talking. One time to stop talking is when everyone else in the family is listening to the singers on American Idol. We had to work on this one for a few years. Many people have difficulty implementing these rules; with autism only more so. Will was very outspoken. He was very blunt, speaking whatever came to his mind about a subject. “If you can’t say something nice, don’t say anything at all” was a difficult concept. We had to be very explicit in our explanation of these Unspoken rules.  Frequently, we had to give him non-verbal and quietly spoken cues. One of our cues was a non-verbal signal to lower the volume of his speaking.

We had to explicitly say to him that he should not answer every question in math class just because he knew the answers. He had to wait and let other students answer some of the questions.

On the other hand, Will had his own set of private rules that we were unaware of until we stumbled upon them. These rules had a purpose: they helped him make sense of the world and predict what would happen next. He always wanted to do things correctly and not make any mistakes.

Whenever he wanted cookies, he would always ask me how he many could have – every single time. Finally, I realized I had to put a stop to this verbal habit and say every time he asked, “How many do you think you should have? How many do you think is reasonable? Don’t ask me any more. I know that you are reasonable. When you want some cookies just take a few.” It took a long time for him to stop asking me this question. In later years, he would preface every question with, “May I ask a question?” When he got an assent, he would ask the question. We have been working on this one for many years. Just this week, I reminded him again not to say May I ask a question. “Just ask the question.” He is 24 and has graduated from college.

He became more aware of his habit of going on and on about things in his junior year of college when he had a law professor, who during every class, would go on “rabbit trails” about subjects unrelated to the class materials. I would get emails or texts remarking that this professor was going down the rabbit trails again. Insight.

Sometimes our ways of helping our children held them back in later years. For years my oldest daughter Marie would look at my face to to give her nonverbal information about social interactions. In order to improve her eye contact, we had her look at us. When Ralph would make gentle jokes or spin wild yarns, Marie would be confused and ask me if this was true. I said, “look at my face.” “Do I look like I believe him?” She then became dependent on my facial expression for information about what others were saying to her. I had to tell her to look at the person she was talking to and I had to turn my face away so that she was forced to look at the person she was talking to. She has improved tremendously in this area. College really helped her.

I write about this to explain some of the social difficulties to those who don’t understand the problems with autism. And I write these things for parents so that you can set your mind to the long journey that is ahead.

Conundrum

27 Tuesday Aug 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Support, Tests

≈ 16 Comments

Tags

asperger's, autism, conundrum, disability, equine, equine therapy, fraud, ostracize, Sophie's choice, therapeutic horseback, therapy

When we began going to autism workshops and conferences, we found ourselves the subject of many sales pitches for the newest therapies that would produce miracles.

We also were sometimes pressured by parents in the local Autism Society to make a commitment to purchase a certain therapist’s services in order to “bring her to our community.” Enough parents had to participate in order to pay for her services to make it worth her while to come. Auditory integration training would cost $2,000 for a set number of therapy sessions. Music therapy was $100 an hour.

There were two problems with this.

First, we could not afford it. We were just scraping by as it was. Several options were presented – beg the money from our relatives, put it on a credit card, get a bank loan or a second mortgage on the house.

Second, which one of our children would we choose? Choosing them all was out of the question.Should we choose our gifted, disruptive autistic son or our quiet, multiply learning disabled autistic oldest daughter? Or our youngest, questionably autistic daughter? An impossible choice.

Therefore, we said no. As result, we were ostracized for not “participating for the good of all the children in the area.”

Instead, we chose to invent our own therapies out of ordinary life.

We listened to classical music in the house for our music therapy.

We were blessed by a piano teacher who was willing to try to teach my son. He enjoyed music, singing in tune with gusto. After a year, she noted that he had an aptitude for music. She taught him for 12 years. After that year, we ask her to teach our oldest daughter in order to improve her finger strength and coordination. I thought it might help her learn to hold a pencil. My youngest daughter wanted to do what her brother and sister did. This cost $10 a week per child – a pay as you go therapy.

We chose to take advantage of community subsidized speech and occupational therapy offered by Easter Seals and the Rehabilitation Hospital. These required small payments times three.

In spite of extended and persevering effort, learning to ride a bike did not happen. Instead, we found equestrian therapy – offered at a discount due to the generous donations of the community – also paying as we went. Our children were unable to ride a bike due to balance issues, but they were able to eventually learn to ride a horse independently.

These choices stretched us financially, sometimes heavily, but we made the sacrifices on a weekly, monthly basis. Choices of “miracle therapies” with little proof of efficacy would have bankrupted us.

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Learn more about the benefits of equine therapy here: http://www.autismkey.com/equine-therapy-for-autism/

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