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Tag Archives: asperger’s

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

≈ 7 Comments

Tags

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?

Don’t Get Me Started – A Rant About Grammar, Punctuation & Spelling

12 Saturday May 2018

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

≈ 1 Comment

Tags

asperger's, autism, bullies, Grammar, learning disabilities, spelling

The rules of grammar are a scientific description of how language works, a product of observation.

At my last dental appointment, my dental hygienist invited me to poke fun at people who make spelling, grammar, and punctuation mistakes. “Doesn’t it bug you when…” I refused the invitation by talking about Marie’s severe learning disabilities.

Marie and my husband, Ralph, struggle with writing and spelling, but are very good at diagramming sentences and understanding the “rules” (scientific description) of grammar. They are both math minded. My mother couldn’t spell to save her life, but she did make the best white bread I have ever tasted. My sister struggled in school. She had an undiagnosed learning disability, and suffered for it all the way through school. So I get defensive for my people, when those who are language gifted throw stones at those who struggle.

I love to write and have been doing so since elementary school. However, even though my major in college was English literature with a minor in linguistics, I wasn’t very interested in grammar. I took an English grammar class in college, and struggled to get a B. It was BORING. I was good at writing, punctuation, and spelling due to all the reading I did as a young person, along with practice; but I wasn’t very interested in the scientific description of language. It wasn’t until I took a business English class when I was studying for my associate in legal office administration that I gained a firm grasp on the grammatical rules of the English language.

I do not judge anyone on their use of language, spelling, and punctuation. I am not a grammar Nazi, though I sometimes joke about it. I’ve known too many people for whom this is a life long struggle; and no matter how much they try, improvement is a very slow process. Language is so complicated.

For some of us, competency in writing comes easy. It’s a gift. But for others, it’s a struggle. It is possible to improve over the long haul. I’ve witnessed this with Marie. She never stops learning and she doesn’t give up easily. She told me this morning that she understands the rules of grammar very well, even though she struggles with writing and spelling.

One of the reasons Marie doesn’t use Facebook is due to her spelling deficit. That’s probably true of a lot of people who don’t use Facebook. Here’s the thing, though; it’s easy to throw shade toward those who struggle with language on Facebook because it’s all so very visible, and make the assumption that they’re stupid. But here’s another thing; Marie is kind and rarely complains about anything. Academically, her strengths are in math and logic related subjects like accounting, grammar, and programming. Her major in college was accounting. In high school she completed a two year computerized accounting class in one year. She is now working on a two year degree in programming at the community college, and she is getting straight A’s.

So don’t ask me to judge people based on their skill in using English. You’ll get a failing grade from me and an earful. We all have strengths and weaknesses and we all have something to contribute. And I complain too much and am not always kind.

shutterstock_123177382

Getting Used to It…

31 Monday Jul 2017

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

≈ 5 Comments

Tags

asperger's, autism, empty nest, friendship, growing up, independence

“I’m going out with work friends after work. They will bring me back to work so you can pick me up.” Marie’s text message on Friday afternoon to Ralph and I.

I paused before replying.  Not asking us. Just informing us.

Marie is the oldest and last of our children to move toward independence. Both Will and Patty are living together in another city. In the first part of 2016, we strongly urged Marie to move out of our house and find an apartment or a condo. We looked up apartment complexes and visited several. Ralph met a real estate agent/nurse at his cardiac rehab program and Marie and I looked at condos with her. Twice we were at the stage of signing papers; one to buy a one bedroom condo, one to rent an apartment. Only to back away at the last moment.

We went to Ohio for a weekend to pick up Patty from  grad school, leaving Marie at home alone. Marie cannot drive and had no friends that we knew of to hang around with. She was lonely and bored. After we got back, she informed us that she did not want to live alone. She then went up to her room and used half of the money she had saved for the down payment on a condo to pay off some of her student loans.

So much for our efforts to push her toward independence.

Then Ralph was diagnosed with bone marrow cancer in June. Our doctor made an appointment for him to be evaluated by a bone marrow transplant team in July.

I realized that we had to move out of our 100 year old house due to his immune deficiency, especially if he was going to get a bone marrow transplant.

To be honest, I had long talked about moving. I felt overwhelmed by all the stuff in our house, by the maintenance work that we could not keep up with, by the outside chores. Ralph had been ill since the fall of 2014. When I talked about moving, he said, “We can’t move until I have fixed it up.” But he wasn’t strong enough to do the work. And I didn’t have the time or the skill.

So I suggested helping Marie with a down payment on a condo, and having her get a mortgage with her job and her stellar credit. She had savings and no debt except her remaining student loan payments. And I believe God prepared this condo for this situation in our lives. This was the only property we looked at. We took a tour on July 3, 2016. Marie signed the mortgage on August 11, 2016. We moved in on August 20.

Instead of Marie living with us in our house, we are now living with Marie in her condo.

So yesterday, she let us know she was going out after work with Friends. With people we don’t know. Friends she had made at the job that God supplied. The first time she has ever done this alone. We have always supervised her outings or made sure she was with people that we knew and trusted. For me, it was almost as hard as the day that Will got on a plane by himself and flew to California for a week. I was nervous. But I couldn’t say no.

At eight, I texted her to see how it was going.

“We are walking around Rockford. We are having a good time,” she replied.

As the evening wore on, I said to Ralph, “You can start texting her at 10 to see when she is coming home.”

At 10, Ralph didn’t get any response. Texting or calling.

I messaged my younger daughter, Patty – Well, Marie is out with friends. I have never met these friends.

Patty – So? You don’t get to be protective like that forever. Let it go.

I texted Marie, and asked her to please call me. She called me at 11:00 and said she was on her way. I could hear the voice of the young man who was bringing her back home in the car. I asked if he was going to bring her home.

When she came home, we didn’t say anything about our concerns. We asked her what she did and did she have a good time. She had a wonderful time. They laughed a lot. Went to a restaurant that several different kinds of locally brewed root beers. They ate fried mushrooms, fried pickles, and chili dogs. We did mention that we would like it in the future if when she went out with her friends to have them drop her off at the condo. That way we wouldn’t have to go out in our car to get her late at night.

Patty is right. We can’t protect her forever. She will have a life of her own even while we live together. 80% of the employees at her job are required to have some sort of disability or health condition that is a barrier to employment. The young man who organized this outing is about 28 and just got his license last year. Four of them went out. Two young women and two young men. It’s normal for some of them to never be able to drive. And they took care of each other.

I’m not sure, but this might have been a date.

I guess I’ll have to get used to it…

cropped-1045165_10151767932451387_598288208_n1.jpg

Vulnerability

29 Monday May 2017

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

≈ 2 Comments

Tags

asperger's, autism, conned, crime, scam, vulnerable

Patty has been living with her brother, Will, since February. On Wednesday evening, she she messaged me on Facebook.

Can I ask you something

And can you promise not to tell Dad?

Yes.

Will was conned by a young woman asking for money.

Cash?

Of course.

How?

So, she claimed to have fled an abusive relationship in Alabama…. She was at the grocery store. Will went shopping Monday.

Alone.

I was not there. Otherwise, this probably wouldn’t have happened.

How much did he give her?

Quite a bit.

Does she know where you live?

I’m not sure the total amount.

No.

Good.

We kind of know where she is supposed to live.

How do you know he was conned?

I think we need to call the police. Weeell. He went and saw her tonight (she was asking for help again.)

How much?

And she claimed to have lost her wallet. That’s tonight.

She has his contact information?

She asked for $300 more.

Oh no.

Unfortunately, yes.

He gave it to her?

Block her.

Yeah. I know. Sigh. People prey on those with obvious disabilities.

At this point, I began messaging Will. I found out he had been approached by a young African America woman who claimed to be escaping from an abusive relationship. She asked Will for money to pay her rent. She was crying, he said. She told him she would pay him back, and asked for his phone number so she could pay him back when she got the money. However, over the course of three days, she never paid him back. She only pleaded for more money. Over the course of three days, he gave her $1,600.

I asked him if she knew where he lives or his last name.

He said, No. I hope not.

Do you know where she lives? Did you go to her house? Did you take her to your house?

No. I don’t know where she lives.

Block her. Don’t talk to her ever again.

I’ll give her another week to pay back the money.

No. Block her. Consider the money lost, and this an expensive lesson.

Okay.

I knew that he was still unconvinced. He is independent. He is an adult. He’ll say one thing and then do what he wants anyway. After all, he is an adult (29) and doesn’t want to argue with me, his mother. I understand that.

The next morning I received a frantic phone call from Patty. “Mom, that woman called Will and is asking him to buy her food because she is hungry.”

“Go and tell Will to hang up. Right now.”

I heard her hurrying down the stairs. “Mom, said to hang up. Right now!”

Will hung up. Patty handed him her phone.

“Will, don’t talk to her anymore. That money is gone. You will not be able to get it back no matter how much she says she will pay you back. She will only plead with you for more.”

“I know.”

“Block her.” Then I thought, her friends would still be able to call, or she could get a different number. “Change your phone number. Right now.”

“Okay. I will.”

A few minutes later he sent me a Facebook message with the new phone number. Later, he told me that he was relieved that she couldn’t contact him anymore. We went to visit him and Patty yesterday. Privately, I asked him how she could have gotten $1,600 from him in three days. He said, “She just kept tricking me.” I told him that he had a good heart, that he wanted to help a woman in distress. But she took him advantage of that good heart in him. I know, he said.

Oh Lord. How I want to keep him and his sisters safe. I did not think to prepare him for this. Fortunately, Patty who is living with him, tried to stop him. And when he snuck out to give this woman even more money, Patty enlisted me in the effort to stop him. I hate to think what would have happened had Patty not been living with him.

I hope that he will not give into the desire to try to get his money back. That he will not contact her with his new phone number. Oh Lord. Keep him safe.

Adults with autism who are functioning in the adult world may be more vulnerable to scams. Our Will wants to believe good in others. This experience will hopefully make him more wary in the future. He is usually very careful with his money. And the loss of this money did not endanger his ability to pay his bills.

 

photo-scam

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

 

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