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Category Archives: Asperger’s syndrome

Hope Deferred – Marie

22 Wednesday Jun 2016

Posted by Ann Kilter in Asperger's syndrome, Autism, cancer, Independence

≈ 5 Comments

Tags

asperger's, autism, cancer, independence, myelodysplastic syndrome, stem cell transplant

Hope deferred makes the heart sick,

Yesterday, I took Marie to an apartment building in our town to look at a one bedroom apartment. Normally, this building has a long waiting list for one bedroom apartments. The rates are reasonable, and many residents are long-term. This apartment was available, I suspect, because it was being reconditioned. It is going to have completely new flooring installed. The apartment is modest, but pretty nice for a first apartment. It is less than a 20 minute bus ride to her job. Very important because Marie will never be able to drive.

Marie was going to write a check to reserve the apartment after work today. She was so excited to move into her own place.

Today, I received an urgent call from Denise from our health insurance company. She told me the local transplant center was out of network for them. If we chose to have Ralph evaluated there, our insurance company would pay 60%, leaving us on the hook for 40%, which would cost us hundreds of thousands of dollars. Completely out of our price range. The approved stem cell transplant centers are over a hundred miles away. We would need to travel and stay at hotels for Ralph’s treatment.

Marie will be 30 this summer. Her younger brother moved out four years ago to take a job in another city. He bought his own house a year ago. Her younger sister, Patty, moved to Ohio to pursue a graduate degree. She had to get an apartment.

Marie has been waiting to get her own place. She is the most impaired of her siblings; so her journey toward independence has been drawn out. Still, I believe she is ready. And moving to her own place would relieve us of the responsibility of driving her to her job (a precious job which took her four years to land after college.)

But she pays rent and transportation to us, which I am sorry to say is something that we need to make ends meet. Especially now that we will have to find a way to pay extra expenses for Ralph’s treatment. And we need someone to house sit our dog and our house if and when we need to be gone for a while. Our old dog is not nice to strangers. We need her at home. Yet she longs to be on her own. We need her help.

It’s not fair.

But she is willing at this point to help us. Of our children, Marie is the most selfless; like her father. I hope we can figure out a way for her to take this step sooner. And maybe this loss will turn out to be for the best.
    but a longing fulfilled is a tree of life. Proverbs 13:12

Hope-Deferred

 

The Big C

14 Tuesday Jun 2016

Posted by Ann Kilter in Asperger's syndrome, Autism, cancer

≈ 9 Comments

Tags

asperger's, autism, cancer, myelodysplastic syndrome

The Big C – Cancer has entered our lives. Two weeks ago, my husband, Ralph, had a bone marrow biopsy. He has had a blood disorder for 22 years, thrombocythemia, so he has regular blood tests to evaluate the effectiveness of his medicine. So when his last blood test a month before the biopsy showed a spike in his platelet count and blasts in his blood, they adjusted his medicine and set him up for a bone marrow biopsy.

The bone marrow biopsy came back positive for myelodysplastic syndrome – a cancer of the bone marrow. We went to a different doctor the next morning, and he was set up for a port insertion, and chemotherapy to start on Monday. It seems lightning fast.

We haven’t begun to ask enough questions or even know the questions to ask.

The plan is for him to have a stem cell transplant in six months. If they can find a donor. If he can gain enough weight (He is 6’1″ and weighs 141 pounds, and it has been on the downward trend). If his cardiomyopathy is mild enough. Nevertheless, chemo starts next week.

I am going to open this blog back up. The focus has changed. We still have two kids with autism and one without. We have issues and needs that are not typical for people with normal adult children.

This is a journey we don’t want to go on, but we go with God.

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Kilter Family Update – The Next Stage

05 Tuesday Jan 2016

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

≈ 4 Comments

Tags

autism, change, empty nest, next stage, onward, transition

“A ship in harbor is safe, but that is not what ships are built for.” John Shedd.

My blog posts have slowed down this year. This is due in part to the chaos in my life due to Ralph’s health issues. I just haven’t had the time or energy to devote to writing.

It may also be due to the fact that our kids are leaving the nest and moving on with their lives. I am in the process of letting go, and I feel a need to allow them more privacy.

I’ve received some more reminders lately that the ropes are being cast off and their ships are sailing out of the harbor.

I struggle with the idea of them dating, making decisions with the tag – “just letting you know, Mom….” As if I have no say in the matter! 🙂

They were all home for Christmas and it was wonderful. We enjoyed our turkey dinner. We watched It’s A Wonderful Life. On Christmas morning we turned on the Yule Log movie on Netflix.

Mary’s gift to us was rebuilding my old computer so that I could do my writing and Ralph could play games. Will gave us a new monitor to go with it. Patty gave us a gift card to Olive Garden. They know how to give good gifts…

We talked about going to see the Star Wars movie at the movie theater over New Year’s weekend while visiting Will at his house. Will let me know later in the day that he was planning to see us in February around his birthday. He had plans for another date on New Year’s with a girl he has been chatting with on-line for a while.

While home from University, Patty told me that she was planning to apply for a job at a national historical site, and that if she gets the job, she would not be staying with us this summer. Just letting us know, not asking our opinion, she said.

Mary is planning to live with us for a few more years and save up to buy a condo or a small house. Ralph is recommending a house with paid maintenance. My preference is that she buy a condo. But it is up to her, and she has to make up her own mind. She has been working full time for almost a year.

Ralph is continuing to recover his health, but has had some set backs. He is doing the emotional work of adjusting to disability and retirement. Everything is different for him. He is struggling with loneliness and finding a sense of purpose. I make suggestions, but he told me that he is still recovering and he doesn’t have the energy to take up something new right now.

As for me, I feel a bit at loose ends. Things are changing for me, too. My relationships with my husband and children are different. I probably won’t write about the process. Some of it is exciting. Some, not so much. After a year’s absence, I am planning to get involved with my writing group again. I am thinking about trying my hand at writing some fiction. I have a couple of ideas. I may start a different blog, not related to autism. Having a working computer in my writing corner is a big help.

Thank you all for going on this journey with me.

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Leaving the Nest

30 Monday Nov 2015

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

≈ 1 Comment

Tags

asperger's, autism, encouragement, Grad school, Love in action, thanksgiving

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On Thursday, Ralph, Mary, Will and I traveled to Patty’s university apartment to celebrate Thanksgiving with her. 400 miles one way. I had debated if we should go at all. Whether the time and expense were something we should spend. We wanted to see Patty and visit with her…but after all, we are going to see her in two weeks when she flies home after the semester is over.

Ralph cooked a turkey on Tuesday with stuffing. We froze most of it and took it with us in a cooler. We bought donuts at the wonderful donut shop in our community and took them with us as well.

When we arrived, it was immediately apparent that the weeks of work, intense demands of graduate study, part-time work as a teacher’s assistant, and a week of influenza had taken a toll on the condition of her apartment. After some initial hugs, we immediately started to clean it up. The dishwasher was soon running. We made a few runs to the dumpster. Will helped Patty do all of her laundry.

Will stayed overnight at her very small apartment and spent more time teasing her and listening to her. He also mopped her floors, vacuumed, and organized her stuff.

We went out to lunch on Thursday and took her shopping. Will bought her a few more pans for his Christmas gift to her. But by Thursday night, she was starting to study again.

We left the next morning for our nine-hour trip back.

I am so glad we went. As an encouragement to her and reassurance to us that she could make it to the end of the semester. Will’s deep love for his sister was evident in his servant’s heart for her. Evidence that autism hasn’t impaired his ability to show love and empathy. A few weeks ago, he hired someone to give his house a thorough cleaning. He has been working 12-14 hours a day for one client on the east coast and another on the west coast. Yet he endured 18 hours of travel by car to Patty’s university to visit with her and clean her apartment. Today, I dropped him off at the airport in our town for his flight to the west coast.

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HIPAA Issues

13 Sunday Sep 2015

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

≈ Leave a comment

Tags

adult with autism, asperger's, autism, health information, HIPAA

About a month ago, I noticed that Mary had an soft enlarged area around the base of her throat.

“You ought to get that looked at,” I said. “That area around your neck doesn’t look right.”

So Mary made an appointment with our family physicians practice. She has a different doctor than Ralph and I, a soft spoken muslim woman. We like her for Mary because she is quiet and calm, and yet firm and confident. Mary made an appointment and because she hadn’t been seen for five years, she had to fill out new paperwork. Sometimes Mary wants to be independent, which is normal for anyone, even adults with high functioning autism. So she filled out her paperwork and did not give Ralph or I permission to talk about her health conditions.

A few days after Mary’s appointment, our doctor’s office called me at my work office asking to have Mary call them and talk to a nurse. They also called Ralph on his cellphone. They were very anxious to get ahold of Mary regarding her condition. But they refused to discuss her health condition with either Ralph or me because Mary had not signed a HIPAA form allowing them to talk about her health condition. Mary has a relatively new phone and did not realize that her voice mail was not set up.

We had to have Mary call the doctor’s office. However, this was frustrating for Mary because she works in a call center during the doctor’s office hours, and does not have enough time to wait on hold to talk to a nurse. Finally on the third day, she was able to get through to talk to the nurse.

She had to get an ultrasound of her thyroid nodule. After that the office made a referral to an endocrine specialist for a fine needle biopsy. Mary’s thyroid nodule is benign by the way.

This episode surprised us and demonstrated the importance of talking about medical issues and paperwork. We told Mary that we had filled out HIPAAs with permission for our children to know about our health conditions, and she ought to do the same with Ralph and I, especially since we need to rearrange our schedules to get her to her medical appointments. She agreed somewhat reluctantly, I think because this is an area for independence for her. Still, it is an important issue to discuss and not be surprised about.

When Ralph took her to the endocrine specialist, he made sure that she signed the HIPAA paperwork to allow her doctors to talk to us. The nurse from that office called me, again because Mary’s voice mail still did not work. They had had a cancellation just before the holiday weekend and they were anxious to fill the spot and also save Mary the anxiety of waiting over the weekend. I said to her that we needed to know some information because Mary had some physical limitations and we had to provide her transportation. She was much more helpful. And the doctor had Ralph come in to be with Mary during the procedure.

I know that some day Mary will have to make all of these arrangements alone, but for now it is simply easier for her to get help from us.

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