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Thanksgiving Respite

01 Monday Dec 2014

Posted by in Health Crisis

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Thanksgiving. Time to give thanks to the Lord for the loved ones in my life. Time to catch our breath after a turbulent autumn for our family.

Ralph has suffered a series of health crises, been to the emergency room three times, admitted to the hospital twice from the emergency room. His weight has ranged from 136 to 172, due in part to what we now know is heart disease and pulmonary hypertension. Many questions remain, but for now he is recovering from major surgery for a small bowel resection and colon resection as the result of a tumor, and a stay in the hospital for pneumonia three weeks later. But he is home now, gaining strength before the next series of doctor appointments and tests. Thank you Lord.

I’ve had to do many things that used to be “his jobs.” Shoveling snow. Changing light bulbs and clocks. Cooking the Turkey for Thanksgiving. Cooking all of the suppers (he cooked about half of them). I was successful with some of his jobs.

But I was unable to start the snow blower. We’ve had already 30 inches of snow in November, and the local weatherman predicted another foot of snow. I hated winter at that point. Probably the first thing that made me cry besides Ralph’s emergency hospital stays. A man from our church came and used his snow blower on our driveway and sidewalk. A blessing. (The additional foot of snow never materialized, but there was already over a foot of snow on Ralph’s car at that point.)

The turkey was a bust  at the first attempt. Under Ralph’s instruction, I stuffed the turkey, slathered it with butter, and put it in the oven. I turned the oven to 335. But instead of turning on the timer, I pressed “Time Start” for four hours. By the time I realized my mistake, it was too late. With the advice of the Butterball turkey hotline, I threw it away. Instead of turkey we had beef and noodles with onions and mushrooms. That evening, I went to the grocery store with Will and Patty…and fresh turkeys were on sale for 75% off. The next effort was successful. We had our Thanksgiving dinner on Friday. Still thankful. Still smiling. Still delicious, even though I made the turkey.

Will came home for Thanksgiving and bought us a Christmas tree. Our old giant tree had seen better days. Last Christmas, we used duct tape to hold it together. He knows how important Christmas is to Ralph. Ralph is the one who puts the tree up, coaxes the rest of us to help. Sets up his villages around the dining room. Not sure if the village will get set up this year. But Will set up the tree, gave Ralph some of the branches to unfold, wrapped the lights around the new tree, and he and I put the ornaments on the tree. He placed it where Ralph could see it from the couch he is occupying for the time being. Will loves Christmas, too. Just like his Dad.

Thanksgiving blessings to you all.

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“Rejoice always, pray without ceasing, give thanks in every circumstance, for this is the will of God in Christ Jesus.” I Thessalonians 5:16-18, the Bible

Rejoice, Pray, Give Thanks

19 Tuesday Nov 2013

Posted by in Asperger's syndrome, Autism, Disability, faith, high functioning autism, Miracles, Support, Thankful

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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.

If I have a life verse, this is it. Practicing thankfulness was the way out of darkness, out of depression, out of despair.

We were thrust into the world of special education when my oldest daughter was five years old. At the young fives qualification testing, she tested at 2.5 years in reading and math readiness. Instead of thinking about young fives placement, we were offered placement in a pre-primary impaired program. Instead of thinking about the academic achievements of my children, the sports achievements; we began thinking about slow, steady progress, two steps forward, one step back. I dreaded the beginning of the school year. And I mourned the sudden loss of dreams for my daughter. I questioned everything we had done up to that point in raising her. I wondered if something was wrong with me and/or my husband.

Within that year all three of our kids qualified for special education placement. In hindsight, we should have been able to figure out that something was wrong. There were clues.

After our oldest daughter had been in her pre-primary impaired class for a while, I mentioned my concerns about my son. He was very easily distracted. He turned the lights on and off, constantly. He opened and shut doors to the extent that we had to put spring locks high up on all the doors to keep him from shutting the doors on his sisters’ fingers. He was a screamer who insisted on sameness. Everything he possessed had to be green if there was a choice. He had to have his sandwiches cut in triangles. We should have known. We should have known.

My daughter’s teacher also felt that my son should be tested. So an appointment was made for my son. After two tests, which was all he needed to qualify for special education placement, the teachers, social workers, psychologists, and therapists felt that he should be tested more. In all, he went through eight evaluations. It was emotionally draining. My husband and I, along with our local school representative met with all the evaluators in one big meeting to go over the meaning of the tests. My husband did not want to go because he felt that all they were going to talk about was what was wrong with his little boy. They said he was mentally impaired, had a mild speech impairment, and had autistic traits. But one of the testers told us we should not get involved in the local autism society. (We received some less than stellar advice along the way).

Toward the end of my son’s evaluations, the testers suggested that my youngest daughter also be tested. At this point, I was weary of testing. I told them that they could only perform two evaluations; they could  only do what it took to know if she qualified for special education services. She also qualified for special education placement. At this point, my older daughter and son were in opposite sessions of preprimary impaired preschool; one in the morning and one in the afternoon. The teachers wanted me to bring my youngest daughter to the special school for her therapy. I said no. I cannot be stretched that much.So they had a speech therapist come to my house for my youngest daughter once a week.

The first two years of dealing with all the meetings and special education therapy homework from the school took a toll on my emotional health. I was depressed and crying all the time. We became isolated from parents with normal children, even my siblings. Part of that was our withdrawal – I could only stand so much bragging about how advanced their children were.

When I thought of the future, there was a wall before me. I couldn’t visualize the future. I couldn’t see the light at the end of the tunnel. There was so much fog, I wasn’t even sure there was a tunnel.

Then God gave me this verse.”Rejoice always, pray continually, give thanks in all circumstances for this is God’s will for you in Jesus Christ.” (I Thessalonians 5:16-18)

I decided that even though I couldn’t see the future laid out before me, I could give thanks. Every day. I could do God’s will. I could obey God in doing this.

As for praying continually, that was easy. I was doing that already, every day. Some of the the praying was questioning God’s wisdom in choosing me for this job (James 1:5)  Some of it was crying out to God. Some of it was seeking wisdom, because God says that he will not upbraid a person for asking for wisdom.

But rejoicing? That was a bit much to ask of a person. I found that to be very difficult for a long time. So I practiced what I could do, and waited  for God to tell me how I could rejoice. Eventually, I began to sing songs of rejoicing. Just by singing those songs, I could rejoice.

As I began to practice purposeful, intentional thankfulness, my depression began to lift.

Give thanks

Not Our Typical Thanksgiving.

26 Monday Nov 2012

Posted by in Asperger's syndrome, Autism, Disability, faith, high functioning autism, Support, Thankful

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Our Thanksgiving did not go the way we planned.

Ralph has been working seven days a week for the last month. He was able to get Wednesday, Thursday, Friday, and Saturday off, when his coworkers got Thursday off. This was in part because we had already paid for the hotel suite in Lafayette, Indiana, a drive of four hours. On Wednesday, he drove to get Will from his apartment so that he could travel with us to see his grandmother. The trip exhausted him, but he made it.

On Thursday, I drove the entire trip because Ralph was exhausted from working for a month with no days off. We usually take turns driving.

Some parts of the weekend did go as planned. We almost always travel to Indiana to visit Grandma Coletta on Thanksgiving. 17 years ago, due to her move to senior housing, she could no longer have us as overnight guests. So we began to rent a hotel suite with full kitchen, two bedrooms and baths, and living room with fireplace. We then have her visit us for the two days.

She doesn’t like Turkey, so I always try to make something that she likes and can eat. She is 89 this year (our best guess since she has never divulged her age). This year, we bought precooked food, (braised beef tips and potatoes). It probably wasn’t healthy, but she did like it and was able to chew it. Some  years I can’t get the cooking right. This year, she was pleasant to be around. Some years we have had to deal with paranoia, delusions, resentment, and/or downright disagreeableness. On the other hand, she didn’t seem to have the ability/energy to initiate conversation or answer direct questions. But we found that when we watched football together and talked about it with each other, she was able to chime in, to participate.

We couldn’t get the heat regulated in our suite this year. It was 80 most of the time. In the past, every time she has been in the suite, we always kept the heat turned up to keep her comfortable, but it was uncomfortable even for her. Nevertheless, it was a good visit this year. We are thankful for that.

Friday night, I turned over in bed and had an attack of vertigo. I grabbed Ralph’s arm for support, and said, “My vertigo is back. I can’t drive tomorrow.” I have had several days long episodes of vertigo in the past 12 years, usually separated by a few years. The last two years, it has been a more frequent visitor. In an instant, my life becomes more limited and uncomfortable. Saturday morning, I couldn’t eat breakfast and suffered nausea as well. It could be that the prepared convenience foods didn’t agree with me and the heat dehydrated me. On the last day, we usually go over to Grandma Coletta’s apartment to visit for a few hours before we go home. But we didn’t want to expose her to my possible illness, so Ralph visited her for a few minutes, then he drove us home. He was still so tired, but God kept us safe. I didn’t say anything about the speed at which he drove. The vertigo subsided, but I was afraid that I would have it again that night, and not be able to drive Will back. I knew that Ralph would not allow me to drive, even though he would have to drive after a day of work. I prayed the vertigo would be gone so that I could drive the next day, instead of Ralph. The vertigo was gone last night, and I could in good conscience, drive.

Ralph had planned to cook the turkey after we got home and have Will help him take the Christmas tree out of the upstairs closet and start putting it together. Will brought the Christmas decorations down, but didn’t put anything together. Other Thanksgivings we have put the decorations up on the Saturday after coming home from Indiana. Ralph put the turkey in the oven. We planned to eat it at 10:00 p.m. when it would done. We usually have the Turkey on the Sunday after Thanksgiving, but Ralph was required to work on Sunday. At 8:00 p.m., I discovered that he forget to turn on the oven. The turkey wasn’t done until 1:00 a.m. We deboned the turkey and put it in the refrigerator. The four of us had our turkey dinner at 11:00 a.m. before I took Will back to his apartment. I prepared a plate for Ralph to eat after work. (He really liked it).

I am so thankful. Our holiday didn’t go as planned, but God kept us safe. We had a visit with Grandma Coletta which was encouraging to her and us. We were able to fix food that she wanted to eat. Due to the attack of vertigo and nausea, I was reminded that I am not in control. My family took care of me. God took care of me. The ornaments and the tree are still in the boxes, but at some point, we will decorate the house for Christmas. We couldn’t eat our dinner together due to circumstances beyond our control, but we were able to eat a nice turkey dinner. Will is back at his apartment (although we did discuss him putting new wheels on his car so that he can drive himself to our house next time and not be dependent on us.)

There is so much to be thankful for.

What Ships Are Built For

07 Tuesday Aug 2012

Posted by in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, faith, high functioning autism, Independence, Miracles, Support, Thankful, Transition issues

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2,000 miles. It is breath taking. Will will be flying to San Francisco next week for more training. Then he will be working on a long term project in web development.

When we took him to the interview 70 miles away, there was the risk that he would move away, and it happened. When he was offered the position as an entry level web developer, there was the risk, in fact the certainty, that he would travel for his job.

Now, he is traveling to San Francisco. The project manager really wants him to come San Francisco and not Chicago. He interviewed well, the project manager told him.

A ship is safest in the harbor, but that is not what ships are built for. (John Shedd) This saying has been in my email signature line for the last 10 years or so, to remind myself daily that I cannot keep them in the harbor. Oh, the internal struggle of parents of high functioning autistic adult children.

But to keep them in the harbor is not healthy for them or for us. We have constantly talked to our children about their futures, creating expectations in their minds and ours. When Mary told us that she should not have to sweep the floor because she wasn’t very good at it, I told her that she needed to practice for living in her own apartment. Not if, but when. When you go to college, we said. When you get a job, we said.

Now the rubber meets the road. I hope the preparation and the training are enough to help him through. It is wonderful, yet exhausting. We will be gripping our seats for his next steps. So I pray, pray, pray for his safety, that everything goes smoothly,  but I resist the urge to tell him he can’t go. I don’t know how he is going to manage it, so I pray. And we encourage him to seek advice, to talk to others to prepare himself. Our time of preparing him is over; he is responsible for his own path.