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Tag Archives: asperger’s

Today It Becomes Real

20 Monday Jun 2016

Posted by Ann Kilter in cancer

≈ 4 Comments

Tags

asperger's, autism, cancer, myelodysplastic syndrome, steep learning curve, Vidaza

Today is Ralph’s first chemotherapy appointment. He gets Vidaza administered via his port (which was placed last Thursday).

For 22 years he has been going to the Hematology/Oncology Clinic to treat for his blood disorder, thrombocystosis. For 22 years, his bone marrow has over produced platelets, and the treatment has been Hydroxurea – an old cancer drug.  His diagnosis is now listed as thrombocytosis – primary; myelodysplastic syndrome – secondary.

I have sat in the waiting room with Ralph a few times in the last year, due to his illness caused by a benign tumor on his small intestine. When other people would come into the waiting room, I would think – that person has cancer. This person has cancer. Such a morbid thought process. Now when medical people and others see Ralph, they are not surprised that he has cancer. He is waif thin.

Last night I was reading through the side effects of Vidaza. Likely near term side effects: nausea, vomiting, fatigue, etc. Longer term side effects due to low platelets, low red blood cells, and lowered white blood cells – fatigue, danger of bleeding, and severely lowered immunity. So I need to take his temp if he gets any fever 100.5 and above, and call the doctor day or night. Watch for any kind of infection. Because of the risk of bleeding, he won’t be able to use a regular razor…I need to buy an electric razor.

It’s a steep learning curve.

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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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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Panic – What’s a Mom to Do?

22 Sunday Nov 2015

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

≈ Leave a comment

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

≈ 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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