Disability – When SSA Agrees


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We received a letter on Friday from Social Security regarding the amount of Ralph’s monthly disability payments. We haven’t received the official Award Letter yet, but that will probably come soon.

When we went to the Social Security office in  late December, we didn’t know whether he should apply for disability or not, but we had been encouraged by hospital social workers, nurses and others to apply as soon as possible. We thought they must know something we don’t. At the office that day, the interviewer took all of our information. As we were leaving and I was helping Ralph put on his coat, he said, “Well, that’s one way to lose weight.” I looked at him and thought, it sure is a rough way to lose weight. We said “Thank you for your help.” And we left.

Those in the know around us said that it would probably take more than a year to be approved. But here it is, about three months later, and Social Security has decided under their rules, Ralph is disabled. We don’t know when the payments will start. Or if they say his disability started on the day Ralph went into the hospital or from the date he applied.

I asked Ralph about how he felt about it. He said his feelings are very mixed. On one hand, it is a relief to know that he will have some dependable income. On the other hand, it’s hard to think of yourself as disabled. To have the government agree that you are disabled.

It is likely that Ralph qualified based on his age, the type of work he did, and the multiple chronic health conditions which have been diagnosed since his bowel resection surgery in October. Last summer, I was concerned because I watched his health decline and exhaustion take over, along with unintended weight loss. He’s had many tests since then, with few answers. He is still weak, with muscle wasting, and underweight. He sleeps a lot. Yesterday, we went to three different stores to find a microwave oven. After we got home, he told me he was wiped out from so much walking. So I guess they are right. I am relieved that he doesn’t have to go back to his heavy labor job.

Ralph will have to make some adjustments in his thinking and his life. On the other hand, maybe he will recover enough to enjoy his life. And find another purpose beyond fulfilling the imperative that he support his family. He has gone to work sick, tired, injured. He had to be vomiting in order to take a day off. He suffered from a leg ulcer for two years from 2005 to 2007 and still went to work every day. From now on, things will be different.







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What a year this has been.

Patty has been admitted to university to study for her masters degree in history. Yesterday, they offered her a tuition waiver and teacher assistant position with a stipend.

Mary started her job in February.

Will bought his house and moved in February.

In the midst of Ralph’s health issues, wonderful things are happening in our children’s lives.

I am unsettled about Patty moving 400 miles from home (by car), but the Lord says to my spirit, “Trust me. Trust me.” Patty has said that she feels it is her calling to teach history at the college level. I have to let her spread her wings.

Life on the Other End of the Tether


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Life’s not so easy on the other end of the tether, either.

Mary is dependent on us for most of her transportation. We live in a mid size city in the Midwest. We have public transportation, but it leaves something to be desired. Six of the communities in our town have voted to support the bus system. The rest of them voted no on paying for buses, which means large parts of the metropolitan area are inaccessible to people who can’t drive or don’t have a car.

We have been driving her back and forth to work since the beginning of February. We are happy to do it, but it adds an extra 90 minutes of driving to our days. It’s a great opportunity to talk to Mary every day, hear how it is going, how she is feeling about her future, what her plans are.

Still, Mary is feeling the strain of the tether, and so are we.

“When I was unpacking Will’s clothes in his room with Aunt Mary, I felt so jealous. I wanted my own apartment or condo. I wanted to move out, but I know I need to have patience,” said Mary one morning on the way to work.

Over the last year or so, Mary and I have had many discussions about where she would live, how she would get around, how she would meet her own needs. Having a full time job has transformed her wishes to plans.

Finding an apartment or a condo which is near a main bus line rather than a tertiary bus route, is essential. The apartments closest to her job have bus transportation from 5:00 a.m. to 9:00 am and from 4:00 pm to 9:00 pm. A few bus routes have service from 5:00 a.m. to 11:00 p.m. and on Weekends. Not many though. But she is doing the research.

“I have to have transportation for when you aren’t able to take me to work anymore,” she said.

“I’ll still be around,” I said.

“But you might not be available to take me to work every day. I would still like you to take me grocery shopping. Apartments don’t seem to located near grocery stores. At least not the ones near my job, with dependable bus routes.”

Mary is dependent on us for transportation to work, church, the doctor and dentist, grocery store, shopping for clothes, and furniture. That will need to change. She goes to church with us now, but our church is not on a bus route, so either we will need to give her a ride, or she will have to find a church which is near her apartment/condo.

She wants to get to work on her own, have her own place. When, not if, she moves out, all of these issues will have to be considered. She told Ralph last week that she would like to move in about a year during the spring or fall. That should be enough time to save some money and figure out how she will provide for her own needs.

This blog has veered off the topic of transition for the last several months due to Ralph’s illness and hospitalizations. But really, his health issues are germane to the topic of transition. We have been unable to take her where she needed to go this fall. Our friends have helped out when we couldn’t. Chaos entered our lives, and we couldn’t provide for Mary.

“I know I can’t always depend on you and Dad,” said Mary. It’s true. So she is making her own plans to break the tether.


Life on a Tether


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“You’re tethered, aren’t you.”

My friend said this to me when I told her about Mary’s new job, which is ten miles away from my house, through many stoplights (There is no freeway to get there). “How is she going to get there?,” she asked. “I will drive her there before work and Ralph will pick her up after work. Riding the bus is an hour each way from our house, so that’s the plan for now.”

“Yes. I guess I am.” Tethered, that is.

I have been digesting this for the last week. Mary’s new job means that our schedule, our time off, must coincide with Mary’s time off. Ralph has now recovered enough to drive, so he can help with her transportation. Which means that I can work late to make up for the hours that I spend at Rick’s appointments.

Sometimes over the years, I have struggled with discontentment. Frankly, it is a common struggle for parents of children with autism (ours), and other disabilities.

When my friends show me their pictures of their vacation to the Tetons, Florida, Hawaii, I dare not let myself think about going there myself. It would be too difficult to manage. The same way, early in the journey with our kids, I dared not let myself dwell in the dark cellar of envy when my friends and family bragged about their kids’ sports accomplishments, scouts, graduating to a two-wheeled bike, etc.

So I set my mind to expect that we would be tethered to our kids long after our peers were free to travel, go on vacations, go on cruises, etc. When our peers sent their kids off to college, we were still driving our kids to college. Five days a week, September through early May for eight years. Our schedules were dictated by our kids’ needs. We have never taken a week’s vacation away from our home. We occasionally have rented a cabin for three days (when they were in college), and camped in our little pop-up camper when they were younger for three or four days at a time. We have visited our relatives for a few days a couple of times a year for several years. But that was no vacation.

We could not go on an extended vacation or even think about going to Florida to visit my parents because 1) we could not afford it due, in part, to the cost of our kids’ therapy over the year, and 2) the logistics of all the preparation to get there.

But If I let myself dwell on the freedom and vacations my friends enjoy, I will end up tainting, poisoning, muddying the joy which God has prepared for us. Teddy Roosevelt said “Comparison is the thief of Joy.” And there has been joy and happiness in our journey.

Our kids graduated from high school, and then college. All three of them. Our goal from early on has been independence to the degree possible for our kids. We are almost there. Mary started her longed-for job two weeks ago, and we are committed to her success because it means she may be able to support herself and live on her own. Patty lives at home with us because we are supportive of her goal to go on to graduate school and study history. Will has moved away from home, and his good job has led to the purchase of his own house. Today we are planning to go to his city and help him move. Ralph can’t do any lifting, but he can help with Will’s cats. That is his job for today.

Our commitment to our kids well into adulthood also has other effects on our life decisions. Ralph’s doctors have not found the cause for his overall decline in health for the last several years. Our doctor (PCP) has now suggested that he go to Mayo or Cleveland Clinic for evaluation regarding his blood disorder, thrombocythemia. Our doctor has discussed Ralph’s conditions with other doctors in the area, including a hematologist with years of experience. This is possibly the next step.

Ralph’s first reaction was “No. We can’t afford it.” My first thought was, “how can we manage it logistically. How can we get Mary to her new job if we have to travel for Ralph’s evaluation?” Not what would be best for Ralph’s health. Our tether influences all of our decisions. We are care givers. I am a care giver for Ralph, as well. We have not even begun to consider the other costs versus the benefits. Will it make any difference to his treatment? What will the doctors at Mayo or Cleveland Clinic be able to tell us that would help improve Ralph’s health? There are only two treatments for thrombocythemia. Ralph has used the best one for 27 years. I don’t know what to do. We need wisdom, brothers and sisters. (James 1:5)


Again, I return to I Thessalonians 5:16-18.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

By faith, we look to God in our circumstances. Giving thanks is an act of faith. Prayer is an act of faith. Rejoicing is an act of faith.

By faith, we believe that God’s providence is active in our lives. So we will wait on Him.

And today, we are planning to travel about 100 miles to help our son move into his new house. That is our joy for today.

A Job Achieved


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Today Mary received a job offer/acceptance letter from the company that sponsored her training to become a certified computer technician for a government helpline. She begins six weeks of paid training at the beginning of February.

In April while we were eating lunch at Steak and Shake, Mary told me that she had signed up for computer certification course to qualify for a high tech computer helpline job. (http://annkilter.com/2014/04/07/marys-wishes/).

At that lunch, Mary told me that she was giving up on getting a job in accounting and was going to try something else. She had graduated in 2010 with a bachelor’s degree in accounting, and had not found a full time job.

So this summer and fall, she took a 15 week course for computer certification. I took her to her class for 12 weeks every Monday and Wednesday evening. Then Ralph ended up in the hospital with a bowel obstruction. All of a sudden I couldn’t take her to her class. The building is an hour bus ride from our home. My plans for providing her with transportation fell apart. I didn’t know what to do. I cried out to God.

Then one of the gals in my Sunday School class took charge and arranged rides for Mary during the last three weeks of her course. She also arranged transportation so that Patty could get to her TA job at a local college. I cannot begin to tell you what a blessing this was to our family and especially to Mary and Patty.

Mary passed the certification test on the first try.

She had to get security clearance because this job is for a government contractor. And she starts the beginning of February with six weeks of paid training. Then she will be a Tier I Help Desk Technician. She will be paid a living wage, with health benefits. God’s provision is wonderful in the midst of trials.

I told Mary that the events of this fall demonstrates that we cannot be depended on to meet her needs. I pray that I will be able to take her to her job, and maybe if Ralph recovers enough, he can retire and provide transportation, but there are no guarantees. She may have to make arrangements to live on her own and find her own transportation (by bus most likely) sooner than we had planned. Maybe we will move to a two bedroom apartment closer to her job by bus and she can live with us for a few more years.

Still, she received the email with Job offer/acceptance letter while we were out shopping today. As we were driving home, she said that she had spent the last two hours in a state of pure happiness.

You're hired


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