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annkilter

Tag Archives: adult with autism

He’s Left The Harbor

27 Thursday Dec 2018

Posted by Ann Kilter in Asperger's syndrome, Autism, cancer, Independence, labels, Transition issues, Uncategorized, writing

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achievement, adult with autism, asperger's, autism, transition, writing

“There’s a rumor we may need to go to London around the first of the year,” said Will, via Facebook Messanger to me, Ralph, and Patty. He sent this to us from Atlanta while on a business trip in November.

Will has definitely left the harbor. He owns his own home in another city. He goes on several business trips a year. This year he has spent time in New York City, Los Angeles, Atlanta, and probably somewhere else I am forgetting.

I started this blog in 2011 at Will’s urging. That is, I started writing again. After he graduated from college. He encouraged me to go to a local writing group, and there I learned how to blog.

From 2011 to 2014, I posted once a week on average. After Ralph’s health emergency in 2014, the blog faltered. I lost focus. My entries were not solely grounded in transition issues for young adults on the spectrum transitioning to adulthood.

I wonder what direction I should go from here.

Should I consider closing it down? Our kids are in their late 20s to early 30s. Will and Marie have jobs and mortgages. Patty is struggling for direction, but lives with her brother. Patty has said to me directly that she doesn’t want me to identify them as having any struggles growing up. It is important for their careers that they not be identified as ever having been on the spectrum. I struggle with this, because it has been so much of my life, raising them, and helping them achieve what they have. But I can see her perspective. On the other hand, she has told me that I need to write the story of our family. If I don’t, she has said she will. She wants to see my journals. However, I don’t know if she could handle the rawness of those emotions. I stopped journaling when they learned to read well.

Should I gather up these blog entries and put them in a collection of essays and publish them under the pseudonym of this blog. What if that becomes successful? Will they be “outed?”

If nothing else, this blog has been cathartic for me. It has helped me understand and process some of the history of our family. Our struggles, emotions, etc. But I don’t know if I should just shut it down. Throw it away. Act as if it didn’t happen.

And then there is the question of whether I should keep writing, and further, what I should write about. So pray for me, my readers and fellow bloggers. I don’t know what direction I should go now. Write fiction, stories, reviews, poetry, etc. What would I write about. I have been busy the last few years just taking care of myself and Ralph, who has cancer. But things have settled down since the diagnosis and subsequent move to the condo with our oldest daughter, Marie. So this spring I have planned to go to a writers’ retreat at the urging of my psychiatrist. He said I need to take care of myself and get away. But I am at a crossroad. I hope nothing prevents me from going to the retreat. It is paid for. I am still a member of my writing group, even though I don’t meet with them in purpose.

Will is out of the harbor. Patty lives with him. We live with Marie in her condo. Maybe it’s time to close the door on this chapter. But I don’t know what direction I want to go next. I just know I want to keep writing.

What say you?

Panic – What’s a Mom to Do?

22 Sunday Nov 2015

Posted by Ann Kilter in Achievement, Autism, Independence, Transition issues

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Tags

adult with autism, asperger's, Asperger's. autism, independence, panic

Thanks to technology, I can know instantly when my grown children are having a panic attack. No ESP or Mom’s intuition required.

Ping! The Facebook messenger notifies me. Pop! A text message announces itself. My computer makes another noise at work as a panicky email appears, ghost like and then fades.

My grown kids can reach out and touch me in so many ways. 🙂

Will lives 70 miles away in the state capitol. In the last three months, Ralph or I have received panicky communication regarding the following:

Anguished decision making regarding whether to make a job change. After four interviews, a job offer came with higher pay and more responsibility. Will accepted the job offer. The a few hours later, I received a phone call on the way home from work. He had crashed his car. It was less than a year old. “If only I hadn’t decided to drive to Verizon to reward myself with a new phone. I was too tired, too wound up to concentrate properly.”

“Will,” I said. “Accidents happen. Are you hurt? Is anyone else hurt?” “I don’t know. They are checking out a senior citizen. Here comes a police officer. I need to hang up.”

A few minutes later, he called back. “I can’t find my registration. Oh no. Oh no. Oh no.” “Will, people have that situation all the time. The police officer will know what to do.” The officer was able to look it up on his computer in his car.

Ralph went into rescue mode and drove to Will’s house, cleaned his house, cooked his meals.

The following Monday Will gave his two week notice to his current company. The next day, they came back with a better offer. Will was a mess, in a panic, losing sleep. He suffered high anxiety over a wonderful, dreadful choice. His dad stayed all week long, feeding him and cleaning house while he made his choice and he drove a rented car while his car was repaired. He stayed with his current company at twice the pay.

A few weeks later, his stove stopped working, after several attempts to keep it hobbling along. Ralph was on the phone with him several times convincing him to buy a good quality stove. Then, the day before Will had to leave for a business trip, the stove was delivered but couldn’t be hooked up due to the lack of qualifications of the delivery team to hook it up to gas. Ralph was staying at Will’s house for two weeks to take care of his three cats. So Ralph had no stove, but also was able to deal with the delivery people. They delivered the stove again, but the gas line was not up to code. Finally, after Will arrived home, the stove was hooked up.

Meanwhile, Patty was panicking during her first few weeks at Grad School. Her iritis finally went away a week after she arrived. During her first week, on the way to a required faculty party in her department, she fell while trying to catch the bus, getting some sore muscles and scratched up hands and face. She sent me an email while she sat in her office thinking about whether she would go to the party.

“Do you have to go? You could go home and tell them that you didn’t feel well.”

“I have to go. I’m an adult and I have to go, even though I was crying.”

“Well, if you have to go, give yourself a little rest.”

She walked over to the hotel, and went to the wine and cheese party. I prayed for her. What else could I do? I received a call at 10:00 p.m. “It went better than I thought. I was the only one who didn’t drink, but it was okay. I talked to my adviser; she was nicer than I thought, but a little loopy. They had food, but some of the grad students were disappointed there wasn’t pizza. We were all hungry.”

“Did you walk home?”

“No, another girl and I said we didn’t have a car, and one of the older grad students had pity on us and gave both of us a ride home.”

Patty was terrified of leading a discussion section. Her position was changed to grading only, which has worked out well for her.

She had awful, horrible cramps and finally went to the doctor, who put her on the pill. And said, given our family history of endometriosis, it was likely she had the classic symptoms. And that part of her problem was living away from home for the first time.

Last week she came down with influenza, and later this week, her iritis came back. She was frustrated that she couldn’t get through to her eye doctor. “I don’t have time for an appointment…but I have to go. I might go blind if I let this go. Maybe I’ll have to go to the ER.

“No. Don’t go to the ER. You don’t need to go to the ER. You can wait for an appointment.” At my desk at work, I looked up her doctor and called the office. I got right through. “My daughter likely has iritis and needs to see the doctor.” I made an appointment for Monday. And emailed her the time of the appointment. I sent her the correct phone number. (I look up medical providers for my job in order to obtain medical records for Medicare Set-Aside Proposals.) She called and changed the appointment and insisted the receptionist call the doctor and see if it was okay for her to start the treatment. She can take of herself, after all.

Most of Will’s panicky calls for help come to his father by phone. Most of Patty’s cries for help come via email, text, or Facebook messages.

What’s a parent to do as our kids start out on their own? Pray, give advice, and pray some more.

Help

 

 

HIPAA Issues

13 Sunday Sep 2015

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

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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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