Nightspren

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At the behest of my daughter, Patty, I have been reading The Way of Kings by Brandon Sanderson. There is a type of creature, sort of, which appears when certain processes occur, both emotional and physical. Sort of a mix between spirits and vibes. So there are angerspren, painspren, gloryspren, deathspren. Lately, I’ve been plagued by Nightspren or maybe worryspren. I suppose you could attach any worry or concern or difficulty or even achievement to “spren.” Sort of a superstitious way of looking at the world. Or possibly a description similar to the idea of giving off a vibe.

Like many parents of kids with autism, I am sometimes awakened in the middle of the night with concerns. Patty says, “Why don’t you call it what it is, Mom. Just plain worry.” She is right of course, no matter how much I try to euphemize it. I think I must give off a vibe. Sometimes, when I am intensely concerned about something, Ralph will walk in from another room and say, “What? What’s going on?” I didn’t say anything. He couldn’t even see me. Sometimes he’ll call me…at work. “Did you call me?” he’ll say. “No, but I was thinking about you intensely.” A kind of telepathy. Perhaps spren is just another idea for processes in the world that we can’t see and don’t understand. Only in The Way of Kings, Sanderson’s characters can see them.

So in the middle of the night, I am pestered by small and large worries:

Mary will be starting training for a job at a computer help desk in 10 days. We hope that she will be able to learn computer language, but what if she can’t? Her spelling is terrible, although she has learned how to use tools available in Microsoft and other programs (like WP) to assist her. What if she gets through the program, but doesn’t pass the certification test? What if she passes everything, but doesn’t get hired for the job? What if she gets the job, but can’t handle the help-line calls? What if my car breaks down? Or the hours mean I can’t drive her back and forth and she has to take the bus? What if the bus doesn’t come in time? And you can see how this goes, round and round my mind goes, racing faster and faster.

And then I think about Patty, and Will, and my job, Ralph’s job, finances, health, war, famine, and pestilence, etc.

From both a physical and spiritual standpoint, I need to stop this; turn it off.

Physically, I have bipolar disorder, and I can’t tolerate sleepless nights for long without having an episode. Sleepless nights also affect my ability to function during the day. Physically, I can quit tossing and turning and get up out of bed, eat something, read a book, clean something that has been bugging me, take pain meds if pain is issue, get a warmer blanket, or find a way to distract myself (usually, the history channel) and then go back to bed.

Spiritually, worry chips away at my faith, my confidence, my strength. Corrie ten Boom, a Christian who survived the death camps during the holocaust, commented, “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” I’ve been awake since 3:00 a.m. (one of many early wakings in the last several weeks). Spiritually, St. Peter encourages us to cast our cares upon the Lord, for he cares for you. (I Peter 5:7). If something is waking me up in the middle of the night, it is an opportunity to bring it to the Lord in prayer.

Sometimes if something is waking me up in the middle of the night, it may be time to repent or make a change in our lives. At times, my night time struggles have caused me to own up to going the wrong way in my life (to break up with a boyfriend). Or sometimes, a night time awakening has led me to make a change (Instead of going back to school to become a teacher, I became a legal secretary).

Sleep deprived nights can occur due to circumstances beyond our control. Then what? One of my Sunday School teachers, Ken, was in a wheelchair and on oxygen. He was often in the hospital for extended periods of time. One Sunday when he was able to make it to our class, he said, “When I am in the hospital and can’t sleep due to the pain, I pray for each one of you by name in the watches of the night.” I miss him. Sometimes I have found that when I pray for others in the watches of the night, sleep does come. Not always.

King David from the Old Testament was troubled, yet spiritually sensitive to God. He spent many sleepless nights, sometimes due to his own failures. Yet he wrote of his struggles with sleep in Psalm 63.

On my bed I remember you;
    I think of you through the watches of the night.
Because you are my help,
    I sing in the shadow of your wings.
I cling to you;
    your right hand upholds me. Psalm 63:6-8

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What do you find helps when you are pestered with sleepless nights?

When A Door Seems to Be Closing…

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Try some other doors. One of them might be unlocked.

Mary has been trying for since 2010 to find a job worthy of her degree in accounting. The door has been closing due to some seemingly significant barriers: being unable to drive, learning disability, autism, etc.

About three months ago, she told me that she was ready to try something else. (See Mary’s Wishes). She went to Goodwill and took a test for a new training program to qualify for a computer training program. She qualified, and was to start when she found out that the trainer had moved on to another job. It took three months for them to hire another teacher. Finally, she will be starting the program in about ten days. Two nights a week. The Kilter taxi service will be starting up again, but we can’t pass up this opportunity. Perhaps if we jiggle the door knob, another door will open. :)

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Sisss, Boom, Ahhhh!

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Not so much, according to our youngest daughter, Patty.

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Maybe it was the fact that she was born the day before the 4th of the July. She heard the beeps in the NICU (neonatal intensive care unit), having sucked in some amniotic fluid on her way into the world. The next night I remember laying in my hospital bed without my baby (she was in the NICU), listening to the fireworks as they exploded over the lake near the hospital. Maybe that was it.

Probably not. But there is no denying the fact that Patty hates fireworks. Always has. Or anything that screams, booms, explodes, or buzzes loudly. We took her and her siblings to see the fireworks near her first birthday. She screamed. Ralph took her to the car and shut the windows. We tried ear plugs, ear phones, etc. A few times, we parked so far away that she couldn’t hear the fireworks. That was tolerable, barely. Parades were no fun, either. Fire trucks are loud, close up. So are semi truck horns. Candy does improve things, but not much.

For a child born the day before the 4th of July, the celebration is painful.  Her sensitive hearing makes it miserable.

The 4th of July is one of my favorite holidays. I love the fireworks, the parades. But Patty stays home. She sleeps downstairs near the holiday (the neighborhood fireworks whiz and pop right outside her upstairs windows).

How about you. Do you have any holidays that make you run for cover?

 

The Kilter College Taxi Service

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“You know what I miss since you graduated from college? I miss talking with you on the trips back and forth five days a week. Now I only have you in the car alone when we go to choir practice.” I said this to Patty on the way to choir practice last Wednesday. She agreed with me. Ralph had this same sentiment, which he expressed to Will, after Will graduated.

The Kilter College Taxi Service started in the fall of 2005, when I began taking Mary to the local community college to study accounting. I admit I took Mary to college in part because I wanted her to have something to do after graduating from high school. One of her high school teachers had said that it would be a waste of money for her to go to college. Before she started college, a neuropsychologist predicted she would not go much beyond her first year, if she went that far. Nevertheless, I kept taking her, thinking that at least it would keep her from being totally bored. I usually dropped her off at school, and Ralph usually picked her up. She went to school three to four days a week.

Two years later, in the fall of 2007, Will began attending a local Christian college. His college had a five day a week schedule.

Two years after that, Patty started college. During that year, we were driving three kids to three different colleges. During one stretch that year, I was dropping one or more of them off at 7:45 a.m. at one school, and picking another up at 9:30 p.m. Mary had night classes four days that semester. Honestly, I look back and don’t know how we did it…just by the grace of God.

Some statistics:

1) 5 cars have been involved in the taxi service: 1998 Ford Taurus, 2000 Mercury Sable, 2002 Chrysler Town & Country, 2004 Cadillac De Ville, and a 2013 Chrysler 200 (pictured below). The only car that left us hanging was the Chrysler Town & Country. The week before Patty’s final exams in 2013, it died. We ended up having to rent car to get us through the week.

2) We didn’t leave anyone stranded (for long), nor did we lose anyone in those nine years. Although there were a few times when I would walk in the door home from work, and Ralph would say, “Where’s Mary?” or “Did you forget someone?” Oops. And I would have to turn around and get them, or he would say, “You sit down. I’ll go get them.” Or vice versa.

3) On school days, we used at least 70% more gas than we would have, had we not been driving our kids to college. Some days, especially during the first winter of driving my son to college, I wondered if it would have been less expensive to have him live on campus. But when I did the math, and even when gas was $4.19 a gallon, we still saved more than half of what we would have spent having him live on campus.

4) On school days, I spent an average of an extra 90 minutes per day driving kids to or from college. Every trip was an opportunity to joke around, talk, have deep discussions about their classes or other issues of the day. It was an extra opportunity to influence our kids, to teach, to know them as young adults. It was a chance to continue honing social skills.  Our conversations weren’t always interesting. Sometimes, I let them know in the process of going on and on about computer programming (Will), tax fraud (Mary), or managerial economics (Patty), they had lost me. They told me they felt the same way when I started talking about Medicare Set-Asides (in workers’ compensation).

We started driving our kids to college because Mary and Will could not drive due to their autism. In our family, autism has affected hand/eye coordination and motor skills. As a result, many skills of a physical nature have come more slowly, if at all. According to the Drivers Rehabilitation Program in our town, Mary is not allowed to learn to drive. She has made two attempts a couple of years apart with them, and the Secretary of State has been prohibited from issuing her a learning permit. Will learned to drive with the Drivers Rehabilitation Program during his junior year of college. He received his driver’s license when he was 22. That was a happy day. Patty, although capable, still does not have a license, but this will change soon. Like many millennials,  she is fearful of driving. I guess I have let it go because we still only have two cars, and the insurance costs will go up. And maybe it was easier than fighting her on it. Still, getting the license and driving will be the next step in her independence.

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I mentioned in an earlier post that the Kilter College Taxi Service had ceased operation because our third child, Patty, had received her bachelor’s degree. We were done, I said. That is not entirely true. She has a few more classes to take at the Community College (French), and some tasks to complete (getting her drivers’ license). But I expect Patty to share in the driving chores until she goes off to grad school. Still, I feel at loose ends. Although I have had summers off from driving to college daily, I am now facing a fall where I don’t have to take anyone to college every day. My friends at work asked me what I was going to do with all my extra time. I have toyed with the idea of finding another student to take to college. It’s probably time to move on. I am just going through a little adjustment anxiety.

 

Ten Things I Wish Were True

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1) Every child with a disability who is entitled by law to receive a free and appropriate public education (FAPE), receives one. This was not true when I was raising my kids. I heard stories at conferences, at advisory committees, legislative comment sessions, and on the internet. In this era of public school destruction, I fear the situation is even worse. (Federal Law mandates FAPE, but with the reduction in funding and the systematic destruction of our public schools due to corporate interference, I’m afraid FAPE is much more likely to be denied.

2) Your kids will always have a job because of their disability. The person who said this to me felt that her kids (brilliant) were at a disadvantage because they didn’t have special job protection under the law (discrimination protected status supposedly given to special classes of individuals due to race, disability, and sex). The unemployment rate of people with autism is above 50%.

3) I wish the liquid asset limit for SSI was raised. The amount for an individual is still at $2,000 and for a couple it is $3,000. This is not enough money to save to move to an apartment, or for emergencies that may come up. For us, it was not enough money to replace an engine in our van in the late 1990s. The amount has not been raised since at least 1994, when we started on SSI. One worker told me that SSI is welfare, that is why the limit is not raised. But as parents who raised two children with autism and one with learning disabilities, this asset limit left us in desperate straights more than once.

4) Every parent of a child with disabilities had a mentor, a coach, a village of helpers.

5) There was a cure for children with autism who have major impairments.

6) Employers would give high functioning adults a chance. And if the first or second person doesn’t work out, keep giving a chance to someone else until they find the one who fits.

7) Those who look down on our parenting skills would spend a day in an autism parenting immersion experience.

8) Immunizations really did cause autism. Then autism could be eradicated within a generation. Instead there are worse things which can be attributed to a lack of vaccines, such as infant death by whooping cough, death by lockjaw, heart disease caused by measles (my mother), etc. The causes of autism appear to be numerous.

9) Every person with autism would have a circle of friends. In high school, Will had the football team (who let be known that anyone who messed with him, messed with them), along with many others.

10) Every family affected by autism would have a fabulous vacation at some point in the journey.

How about you? What would be on your wish list?

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