"Normal" Is A Dryer Setting

Parenting A Child On The Autism Spectrum


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The Two Tests

The starting point of all achievement is desire. ~Napoleon Hill

My son Tim and I each passed a test last week. Each of our tests required months of preparation, learning bit by bit, with a large amount of practicing over and over again. The consequences of either of us passing either of our tests and making a mistake are potentially life threatening, and I told Tim repeatedly that if he does not pass the first time there is a good reason behind it. His test administrator wants to make sure he is safe and knowledgeable about the subject matter.

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Tim passed his driving test on the first try and received his Minnesota Driver’s License this week. Rock on, Tim! Many of my friends who remember when he was three years old and I would bring him to lab could not believe that he is Almost All Grown Up. I breathed a sigh of relief because our area is scheduled out for months for licensing exams, and if Tim didn’t pass this time he would be taking his driving test during the winter. When I mentioned that to the staff at the counter who helped Tim fill out his paperwork her response was, “Oh, no worries. We’ve tested people during snowstorms before and they did fine.” One of my technicians, who openly admits to being a terrible driver, also mentioned to me that she did not pass her licensing exam the first time yet the State of Minnesota sent her a driver’s license anyway. Not passing, however, simply meant that Tim would retake the test another time.

My test was not as big a deal yet opened up an entirely new world for me.

 

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Neither my friend nor I passed our lead belay test the first time, but we did pass on the second try. My boyfriend, who has been lead certified for Idon’tknowhowlong, was there both times, fully supportive, a little bit nervous, and trying to stay out of the way. My friend was devastated when she failed the first time. Me, not so much. One of our administrative assistants for the lab I work in mentioned a number of years ago that 99% of the experiments we as scientists set up fail, which is actually true. She admitted that she could never live with that much failure, which probably is for the best that she never went into science, because the bulk of it is about failing, and adapting, and retesting, and failing again.

I told my friend who took her failure so hard that she will not pass her test until the staff are confident that she knows what she is doing and is safe. I also prefer to make the bulk of my mistakes before anything becomes serious, and I mentioned that the more mistakes we make while preparing for our test, the better we will be for it. I would rather make a mistake before or during our test rather than halfway up an 50 foot cliff, for example.

I was prepared to give Tim the same advice when I took him for his driving test. This is actually a difficult exam in Minnesota, and many people do not pass it the first time. I knew he was a good driver, but I did not want him to get his hopes up. Instead, I told him to do his best and reminded him that if he does not pass, it’s no problem – we will simply sign him up again and practice what he needs to work on. I was nervous for him while waiting, and the butterflies in my stomach made me realize how much I want him to succeed in everything he works toward. I was so happy for him when he passed, and he even let me give him a big hug in the middle of the hallway before we went in to fill out his paperwork.

Tim has been successful in so many small ways in his life. These are events that often go unnoticed, and for some people, are expected to happen as part of daily life. When Tim was smaller and went through weeks of not being able to control himself, a success was getting through an entire school day without the principal calling me at work. Last year Tim worked a part-time job in his school’s store, and we celebrated his first paycheck. Now that he has his driver’s license he will apply for another part-time job at the teeny tiny family-owned grocery store down the road from our house. The sign on their door reads “Stock boy wanted…no grouches!” which indicates that, if Tim gets the job, a cheerful and enthusiastic attitude will be a must-have. A month ago Tim took the ACT exam in preparation for college. As the nervous parent who waited in the chilly car for a full 15 minutes AFTER the exam starts Just In Case something happened and Tim needed to come back out, I was nearly in tears because I was so happy that the world of a college education is an attainable goal for my son.

The driver’s license was a publicly known success for Tim, which made me very happy for him. He was proud of himself, he knew he had worked hard for it, and he watched how his efforts paid off. For 16-year-old Tim, this privilege indicates independence, self-sufficiency, and now, finally, a fully justified need for a cell phone.

 

 

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Driver’s Education

The greatest gifts you can give your children are the roots of responsibility and the wings of independence. ~ Denis Waitley

Tim is in his last week of his Driver’s Education course. In Minnesota, when you turn 14½ years old, you become eligible to take 30 hours of classroom instruction on how to drive a car. When you finish the course and turn 15, you take a computerized examination at your local Department of Motor Vehicles where, if you pass, you will be issued a driving permit. The driving permit lets you learn how to drive with a licensed adult in the car, which is good practice for taking the exams necessary to earn your Provisional License at the age of 16. In Minnesota, you can earn your Regular Class D License at the age of 18.

What just happened? When did my baby boy grow up into a hairy teenager?

What just happened? When did my baby boy grow up into a hairy teenager?

My son has been looking forward to his time in his life for several years now. From the time he was small, and especially after he was formally diagnosed with Asperger’s, I have raised Tim to be as independent as possible. Sometimes it has been painful for me to watch him struggle, but his struggles are necessary to help him grow into a fine young man who believes in himself and has the ability to reach his full potential. As a result of the attitude I instilled into my child, he has approached life looking outward. The parent-child relationship is the only human relationship, to my knowledge, where the end goal is separation.

And separate we do and have been for the past three weeks, three evenings a week, for three hours. I get home from work, take a minute to sit down, and then I jump back into the car with Tim to drive him to Safeway Driving School. Since classes run from 6-9 pm, the first week I rushed home to make sure I fed Tim supper before leaving. One afternoon, however, Tim informed me that I did not need to feed him supper that night. I asked him why, and he said he was going to walk over to one of the fast food restaurants near his driving school during their break to buy supper. While saying this, Tim pulled some money out of his pocket and further informed me that he has his own cash and doesn’t need any of mine. When I offered to cover his meals for him, he declined at first (independent boy!) but after a few nights of seeing how quickly meals out add up, he accepted my offer (smart boy!).

With the exception of one evening, Tim has been doing fine in class. Fine during the break where he crosses a parking lot to purchase his supper, and fine with the schedule. The only hiccup was one night when I picked Tim up at 9pm and he threw me a funny look as he got into the car. I asked him “What’s up?”, which is a good way to phrase to my autism spectrum son “What on earth happened this time? Why did you lose control of yourself? Why can’t you just sit quietly like the other students? I hope no one called the police.” Tim’s reply was, “DRIVE! I’m really hungry! I forgot my money tonight!” I laughed, said how unfortunate that was, that I would be hungry too, and we drove home where I made him the fastest supper I could scrounge up out of the refrigerator.

Tim will be finished with the classroom portion of driver’s education at the end of this week. For me, I have had 30 hours to myself in the evening over the past three weeks. What is a mom to do? Here is a list of what I have accomplished:

  • Bought a new drill & hung shelving and a clothes-drying bar in my laundry room
  • Purchased picture frames, framed photographs, sorted through old frames
  • Weeded gardens, both vegetable and flower
  • Made the following jams and preserves: Pineapple, Strawberry, Blueberry, Raspberry, and Peach-Nectarine
  • Made salsa
  • Cleaned garage
  • Went through all kitchen cookware, knick-knacks, storage containers, and donated four full boxes to Goodwill
  • Ran on Minnesota’s Gateway Trail to begin training for three upcoming races this fall; discovered that horses on the trail enjoy keeping pace with the runners 🙂
  • Mowed lawn
  • Pulled out and cut up dead trees and branches from my backyard, burned in our fire pit to make ashes for garden fertilizer
  • Steam-cleaned carpets and deep-scrubbed bathrooms
This is one way to spend an evening while your child is at driver's ed.

This is one way to spend an evening while your child is at driver’s ed.

Tonight I am out of things to do and may spend the evening with a bottle of wine and Netflix. For my fellow vinophiles, there is still time to head out to The Cellars and take advantage of their summer sale. Through the end of July, their vintage wines are the same percentage off as the day of the month. This means that on July 31, you will save 31% on a large selection of wines in their shop. Several ports are also included in the sale.

Is your Minnesota teenager ready to learn how to drive? Here is some information that I found useful on how to go about obtaining a driver’s permit for Tim.


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The Path By The Lake

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth.

~ Robert Frost, The Road Not Taken

One of my friends lives his life so fall off the beaten path it’s not even funny. He grew up in Mexico City, made his way up to the United States as a young man, somehow ended up in Minnesota, married his long-time girlfriend when she lost her job and needed health insurance, and traveled to Kazakhstan after seeing the movie “Borat” and managed to get himself arrested. Where do I manage to meet these people? Work, of course. I ended up on a project that he was the Human Factor Specialist for, and we eventually discovered that I fit into his definition of friend. One afternoon he and his wife taught me how to make tomatillo sauce and gazpacho while downing cups of espresso (it can be done, however shakily from the caffeine), and we have stayed in touch off and on over the years. This man and his wife share common interests in traveling all over the world and meeting all sorts of people, which is what drew them together in the first place. Their home, which is a mansion on Summit Avenue in St. Paul, contains statues, skeletons, photographs, masks, and other souvenirs from their trips and also serves as a landing ground for a constant stream of international students. Each year on Grand Old Day, a street festival that most of St. Paul turns out for, they host a picnic in their back yard. This year it looked like this, and it was as fun as it looks:

Fun lives here.

People who diverge from what most of American society considers normal tend to really stand out. The coolest ones are the people, who like my married friend couple, are simply being true to themselves rather than deliberately trying to be noticed. I was talking to one of my coworkers yesterday about my recent career decision to move into Project Management, which is an unconventional decision for where I am in my company. The part I work in has two career paths: Technical and Managerial. As my coworker pointed out, when I was given the option of either staying on the technical career path or moving into a management position, I chose a path that went straight down between the two. I am forging new ground in my department, making my own way by doing what I have discovered I do well, and I am being met with opposition. Fortunately a solution exists. The product development parts of my company looooove Project Managers, so I am meeting with people in those groups to let them know my interest in moving over. My manager is supportive but sad to see me looking elsewhere because she loves having someone to manage her technology platforms, but she knows that I need to take the next step in my career.

The way I discovered my path-off-the-beaten-path was a simple but stretched out process. The more projects I work on at my company, the more I discover where I function best on a team. I also meet more people, and in meeting more people I become exposed to more opportunities. Very few of these opportunities are handed to me on a silver platter. What usually happens is that I notice something that other people either pass up or don’t fully investigate. I, being naturally curious, figure what is the worst that will happen and, once again, choose to deviate from the norm.

Where does this path lead to?

Where does this path lead?

Yesterday afternoon I decided to take some photos of the lake by my house when I got home from work. We have had a lot of rain in the Twin Cities, and this was a rare sunny afternoon. I started out by walking along my running route and came to a path built into the side of a small hill. I have passed this path hundreds of times before but never stopped to check it out. When I reached the top, I saw that someone had set up a bench in memory of one of their loved ones. When I sat on the bench, I had a beautiful view of the lake. I could have sat for hours in this silent, hidden, isolated spot that was literally across the street from my house.

The secluded spot I found.

The secluded spot I found.

Whomever the bench was dedicated to must have loved looking at the lake. I know I do. That is why I run by it. Right now it is covered in lily pads. Soon it will be filled with loons who call their loopy calls to each other when the sun is setting. In the fall it will be surrounded by trees with leaves of all colors, and in the winter it will be a sheet of ice. Taking the little path up the hill gave me a new view of the lake I see and adore every day. I had the opportunity to see it through someone else’s eyes, and the view was breathtaking. I was thankful for the fresh perspective and glad that I went off the path I already knew so well. It made me think that exploring new paths in life, wherever they may be, should be an adventure. You never know what you will find awaiting you, and it may be more wonderful than you imagined.

Here is what the lake looks like when you are sitting on the bench.

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I mentioned recipes for gazpacho and tomatillo sauce. Here they are, both perfect for a hot summer’s day. We usually cook chicken in the tomatillo sauce, and gazpacho is meant to be served chilled with toasted bread or croutons.

Gazpacho

  • 2 cups stale bread
  • 2 garlic cloves
  • 2 pounds tomatoes
  • One cucumber
  • One jalapeño pepper
  • One green pepper
  • One onion
  • Red wine vinegar
  • ½ cup olive oil
  • One cup cold water, plus more for soaking

Cover the bread with water to soak. While bread is soaking, saute the garlic and onions in a little bit of olive oil. Transfer garlic and onions to a blender. Squeeze excess water from bread and put this in the blender too. Add tomatoes, cucumber, peppers, and vinegar. Process until smooth. Add olive oil in a slow stream while the processor is running until you make an emulsion. Add the cold water until the gazpacho reaches the consistency you want. Season with salt and pepper. Chill until ready to serve.

Tomatillo Sauce

  • 3 lbs tomatillos, cut into quarters
  • 9 serrano chiles
  • One onion
  • 3 garlic cloves
  • ½ cup cilantro
  • 1 tbsp. lime juice
  • 1 tbsp. olive oil
  • Salt

Sauté onion and garlic in large saucepan in olive oil until soft. Stir in quartered tomatillos, chiles, and one cup water. Bring to a boil. Reduce heat to medium, cover and simmer for about 20 minutes or until tomatillos are softened. Remove from heat and cool. Transfer mixture to blender, add cilantro, lime juice and blend until smooth. Add salt to taste.


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The Winds Of Change

Life is like riding a bicycle. To keep your balance, you must keep moving. ~ Albert Einstein

Anarchy has broken out at work. I have been dealing by consuming lots of chocolate and running on the treadmill until my legs feel like falling off. In case you are a new reader, and I do absolutely ADORE new readers, so please keep reading, here is a breakdown of the events from the past two weeks:

  • My lab partner dies. Again, if this is your first time reading, and please accept my apologies for the emotional wallace and gromit¹, here is the link to that entry. This past week her husband, who works upstairs from us, has been sorting through her filing cabinets, sobbing when he thinks no one can hear him. I finally left my office one afternoon to let him grieve in peace and because I was near to tears from hearing him. I went to the building next to mine, planted myself in the doorway of a friend’s office so she couldn’t escape, and told her why I was there and that she needs to talk to me for a few minutes.
  • Our manager moves to China for a two years to set up an R&D lab for our company in Shanghai. We are leaderless until mid-April. And…
  • Voila, like magic…Our cluster has been asked to put together a day-long session of seminars and posters from our group. I have been asked to pull in a coworker, any coworker, from one of the health care departments we work with, and I CANNOT FIND ANYONE to volunteer because 1) it is extremely short notice, 2) people don’t like to be bothered, and 3) several of them already have a day-long meeting the day of our poster session.
  • Already our R&D spending for 2012 is being restricted which means that I need to watch what I purchase for our project. However, no supplies = no experiments = no results. So I spend anyway until someone higher than I tells me not to. And experiments have been making for long work days, which is good but tiring and taking me away from my son Tim.

Tim switched schools as of Monday, and I have made every effort to be home as early as possible for him this week. People with Asperger’s Syndrome sometimes have trouble with transitions, and sometimes they are uncomfortable around people they meet for the first time. This week Tim has had to deal with new busing, a new building, a new teacher, a new schedule, new cafeteria food, new cafeteria rules, new school rules, and you know what? He’s doing great! So far! After one week! Which is better than Capitol View being a disaster from the start.

Tim says that the best part of his new school is that “it just suits him better”. I asked Tim what the worst part is, and he said nothing. I kept pestering him to find out what he wishes was different, and he couldn’t think of anything. Tim has spent the week being tested for placement in math. Today is science his class watched a PBS video on kangaroos. Apparently it is called “Kangaroo Mob” and it is about kangaroos who live in urban parts of Australia. You can pull up the video on PBS’s website by clicking here. In art, his class is working on making masks. Tim has started painting his. Gym class has consisted of playing tennis this week, and Tim decided that tennis is the worst part of school so far. He claims to have repressed that when I asked him earlier about the worst.

One part of Tim’s school day that is unique is the board game part. His class of four boys plays board games regularly to help build social and interpersonal skills. When I asked Tim what kind of games he has been playing, he said they were games for his brain. Then he finished petting Smokey The Cat, asked if he could go, and went back to watching his Netflix program. Another social aspect is lunchtime in the cafeteria. The cafeteria at Capitol View only has a few tables, which forces the students to sit together instead of separating out. While the students may choose not to talk to one another during lunch, they still share a meal at the same table.

An oldie but a goodie! Tim when he was six weeks old.

My first and foremost responsibility as a human being on this green planet of ours is to make sure that I raise my child the best I know how. The best I am capable of. Craziness at work takes away from my ability to raise my child. I have to work to earn money, and, similar to the equation above, no work = no cash = no provisions for my son. At times like these, I am thankful that Tim is an independent and self-sufficient young man. He has had a stressful last couple of weeks as well and is going through a time of transition right now. I actually think he is handling his transitions better than I am handling mine. Maybe it is because life to him is one gigantic behemoth of constant change. Or maybe he just really likes his new school.

¹Cockney slang which is quite fun once you get the hang of it. Daniel turns my James Brown upside down when he starts using it 😀 .


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The Calling

“How do you manage all those scientists with their egos and their bickering and their full-frontal nerdity?” ~ Better Off Ted

Life at home.

I am back at work after almost six weeks of leave. Even though my life slowed down for a bit temporarily, the rest of the world kept chugging along at the pace of a high-speed rail. Before I left work in October, I cleaned up my lab, hid certain objects, such as Rainin pipettors, that I didn’t want wandering off in my absence, and closed the door to my office. Upon returning, I had been at work for approximately five minutes before the following order of events began to occur:

1st day back, walk in the door to my lab, been at work for under one minute: Maintenence guy is working on a ladder in the middle on my lab on the electrical wiring in my ceiling. Informs me that my lab may be without lights for a few hours on and off during the day.

1st day back, 8:25 am: Angry coworker from two halls down wants to know how long the -30°C freezer in our lab area has been broken. I told him a few months. He wants to know what happened to the giant roll of membrane that he had been storing in our freezer (N.B. – not his freezer in his lab or a freezer in someone else’s lab who is actually working with him on his project) went to. I told him I have no idea and there is a good possibility that it was thrown out over six months ago when the former occupant of that lab space cleaned out that particular freezer before it became sensient and decided to shut itself off back in September. Coworker left in a huff and has since decided to speak nicely to everyone but me.

Life at work.

1st day back, 9:15 am: I peek into one of our rooms in our lab area to see if the Massive Pile O’ Antique Lasers And Other Electrical Thingies has been taken to Resource Recovery yet. These pieces of equipment are the last remnants of a former occupant of our lab space who managed to fill five labs and three offices from floor to ceiling with Stuff That No One Will Ever Use. After several repeated attempts to have this cart picked up by the millwrights, it is still sitting there and I spring into action. I haul it into my lab and phone in a work order.

I haven’t even made coffee yet, people. I was exhausted by noon and barely able to stay awake during our project’s team meeting later in the afternoon. I went to bed that evening at 8 pm and told myself that tomorrow is another day.

And the second day back to work was, indeed, another day.

2nd day back, walk into my lab: No electrician, no angry coworkers, email in my inbox says that the cart of lasers will be taken away by the end of the day. Life is looking up.

2nd day back, 10 am: Get in car, drive down the street to our fancy schmancy building where we host important guests to sit in on a Voice of Customer interview on a Key Opinion Leader (KOL) for our project. We all do introductions. I introduce myself as having a background in cancer biology. Our KOL looks up at me rather intently and, with a good reason, asks if I am doing cancer research now. I say um, no, we don’t do cancer research at this company, and for the past few years I have instead been working in areas such as materials science, microfluidics, and applied biochemistry. He begins staring at me like I just sprouted a second head, and I begin to question my career choice.

2nd day back, 1:30 pm: I have my end of the year review with my supervisor. It was short and sweet. He said I had a good year, I agreed, and that was it. Since our company is sending him overseas for a long term assignment in a couple of months, he had sent out a note telling all of us that he wants to discuss our 5-10 year goals during our performance reviews so he can help position us to achieve those goals. During my review he didn’t ask me the 5-10 year question, so I asked him if we needed to talk about that. He said oh, sure, so we talked about it for a minute.

Despite all of the stresses and little annoyances that creep up in the workplace, I realized something when I was at home during November. I do not have a job. I have a vocation, which is from the Latin word vocare, which means to call. When I was college we studied the meaning of the word vocation for one of my literature courses. We reached the conclusion that when you have a vocation, you have something that is an integral part of who you are as a person. It is something you cannot live without. There can be a religious connotation to this, but not always.

The week before I came back to work I started to become a little blue. I wasn’t bored or lonely at home, I simply missed being a scientist. I started to feel empty in my heart, like I was missing a piece of myself.  When you take the scientist part of me away, it leaves a bottomless void. This is an important realization because, as Daniel has told me many times before, I don’t seem to have many needs. I tend to be a complete person on my own. Start taking away key parts of me, however, like the science part, and I begin to come undone.

Another key part for me is being a parent and a caregiver. One perk of being home during the day is that I get to see my son both when he leaves for school and when he comes home. I usually make sure he catches the bus before I leave for work each morning, and during the winter I drive him to school so he stays warm, but he gets home from school a couple of hours before I get home from work. Add in running errands or other extra activities, and sometimes he and I don’t see as much of each other as we should.

Hopefully I will never know what it is like to not be a parent, to lose that part of me. The wonderful part about being a parent is that, once you become one, you are usually one for life. Compare this to a career, where people have the option of changing paths or leaving altogether. What I have learned to is actively appreciate what I have when I have it. Taking a month off from working as a scientist showed me how much I love what I do, and to not let the day to day challenges obscure the larger picture. I am also able to transfer this knowledge to other aspects of my life, such as being a mother, friend, companion, and helpmeet. These all have their day to day challenges too, but keeping the larger picture in mind changes them from challenges to opportunities for improving myself along the way.


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The Imperfect Hostess

Your body’s aching. ~ Beat the Devil’s Tattoo, Black Rebel Motorcycle Club

Amber chillaxin' in the middle of the hall.

My cats have the right idea. They sleep 20 hours a day, anytime, anywhere, getting up only to eat, drink, and make sure the house is still standing. Healing is a slow process, and different parts heal at different rates. A few days ago my entire torso ached, like someone had used me for a punching bag. Then the incisions started to heal, and they felt like five tight stripes down my sides and stomach. Now the final place is the surgical site, which is internal, and pulses with a dull throb. Throughout all of this, I have been awake and alert for a couple of hours, following by crashing out. When my mom sees me tiring she abruptly ends our conversation and tells me to rest.

The capacity of the human body to repair itself so quickly, within a week, is amazing. And I don’t have to lift a finger. The right cells become mobilized to the right places at the right time, and they send out all the right signals, proteins, and other molecules to whip me back into ship-shape. What impresses me the most, and it is something we may not think about often, is how quickly our minds also recover. While I don’t remember the surgery, and a lot of the initial discomfort I felt is already becoming a blurry, my brain has filed away every detail. Even though the anesthesia shut off parts of my brain, it was still functioning on some level.

Smokey the Guard Cat during his wakeful hour of the day.

Let’s forget about physical discomfort for a minute and think about the brain. My brain works differently than my son’s does, and emotional processing is one area in which I see us differing more and more. The day before my surgery my son had a counseling appointment. His counselor asked him if how he was feeling about my surgery. My son responded that he didn’t feel anything. He said that he wasn’t worried because he knew I was going to be fine. His counselor advised him to think about what he said a little more, since surgeries always have risks. I don’t think this comment was too harsh to tell to a 13-year-old. I think it was honest and direct, which is how my son needs people to communicate with him.

My son was worried because the two days I was away from home my mother told me he didn’t eat. Both nights she tried to offer him supper, and he told her he wasn’t hungry. The night I came home from the hospital, however, he ate an entire plateful of spaghetti. The next night he ate a huge portion of pizza. The night after that he ate his body weight in roasted chicken and potatoes, the next night tacos, and tonight he wolfed down the largest hamburger I have ever made for him in under five minutes.

At one point, between cat naps, I asked my son why he hadn’t eaten when I was gone. I asked him if he had been nervous. He said no. I asked him if he had been scared. Again, no. Stressed? No, not at all. He was simply not hungry. I told him I saw the look on his face when I came home from the hospital and walked through the front door, doubled over and panting from the car ride. My version of his look: My son came upstairs from the den and stopped in his tracks, terrified, as I told him to give me a very gentle hug around my shoulders. My son’s version: He was really happy to see me, and why couldn’t I see that on his face.

I am so confused. Something is missing in my son’s brain. What I am observing in him is a genuine disconnect in emotional processing. I believe that he feels the gamut of emotions that we do. There appears to be problems in one of a few areas. Maybe he doesn’t understand what he is feeling. Maybe he understands it but cannot put it into words. Maybe the basic-instinct-survive-at-all-costs part of his brain responds appropriately, but the logical-thinking-intellectual-fancy-schmancy-higher-level part of his brain that interprets those base instincts is malfunctioning. All I know is that he doesn’t understand what he feels when he feels it.

So how is my son supposed to learn from life experiences? How is he supposed to heal from emotional wounds, grow from emotional experiences? Each close relationship I have had, both male and female, platonic and romantic, has taught me something. I have learned how to keep friends, how to lose friends (if one chooses to go that route), when to support other people and when to back away, and how to protect my heart while still giving it away during the natural ups and downs of each relationship. My son will have a hard time with this part of life if he can’t connect to his emotions in the first place.

I gave this entry the title I did because I am understandably not doing anything right now in the way of hospitality. My poor mother has had to figure out how to drive my car, use my dishwasher, run the laundry, and cook meals that my son will eat. This morning I was joking that we have room service here. I suddenly become too tired to talk, and even now I am quickly becoming too tired to type. Yesterday afternoon Daniel and Peanut came over to visit for a couple of hours, most of which I spent draped across my futon while Peanut played with Bionicle and Daniel told me about his most recent business trip. I did not offer them anything to eat or drink, which I would have done under normal circumstances.

What I am discovering is that no one minds not being waited on. Especially my son. I think I have been going about him all wrong up until now. I have always thought of my role as his parent to be someone who navigates him through his life. Since his diagnosis in 2005 I have thought of myself as a conduit to connect the world most of us live in to his. I am the host who introduces him to the neurotypical life. I don’t think he needs that, though, and I also think I am expecting too much of myself. What he needs is to be loved, and supported, and to given time to find his way. He may never learn to process his emotions effectively, but he is the only person who truly knows what he feels, so who am I to say that he is processing them incorrectly or not at all? All that really matters for us, and for any relationship, is that we are together.


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The Short Leash

The sweet things in life, to you were just loaned. ~ From “Life Is Just a Bowl of Cherries”, sung by Ethyl Merman in Scandals (1931).

Murderball rocks. And it's free!

Life can be very short, and it can be very long, and it can be everything in-between. Last weekend Daniel and I had a Big Date, mostly to celebrate life and being together. We started off in the afternoon with a Murderball Tournament, where we watched the Minnesota North Stars play the Chicago Bears. The event was free, and it was held at the Green Central Gym in Minneapolis. The North Stars is the only quad rugby team in Minnesota, and Daniel and I both decided that Murderball games are must-see events. While watching the game, at one point one of us commented on the hours of training that these athletes must put into the sport, and how devoted they are to the game.

The other part of our date, which cost $ but was worth it, was a beer dinner at Stella’s Fish Cafe in the heart of Uptown. The featured beers were all from Brooklyn Brewery, which is a small New York company that is rapidly expanding its way across the country. Daniel’s favorite beer was the East India Pale Ale, and mine was the Winter Ale. Stella’s offered seven delicious courses plus an appetizer, and our favorites included homemade tater tots, tuna carpaccio, and perfectly seared scallops. Since I was designated driver, I kept taking sips of my beers and passing them over to Daniel, and we left the dinner pleasantly full and happy. I proudly thought to myself that I sure know how to plan a good date for my man.

The next morning I picked my mother up at the airport bright and early. She and I spent the next two days together, talking, drinking tea, catching up, and doing fun sights such as a trip to IKEA. Monday evening she and my son drove me out to Daniel’s house because he lives much closer to Fairview-Riverside Hospital than I do, and my check-in time was 6am the next morning.

Yes, this week was surgery week! End of horrid gigantic tumor week. I am back home after one night in the hospital, minus one broken uterus. Daniel asked me before the surgery how I felt about it, if I was nervous, and I said no, not anymore. I told him that I am actually quite fortunate that I am able to lose an entire organ and have it not affect my life. He said he agrees, that I am lucky indeed.

After being prepped for surgery on Tuesday morning, the anesthesiologist injected a relaxant into my IV and told me that it induces amnesia. He said that I won’t remember much after going into the operating room, even though I will be awake for a little while to get my oxygen mask on and answer a few last questions. As he wheeled me down the hall to the surgery room, I wondered how much I was actually going to remember and if it was going to be scary, since nothing else that morning had been so far. The double doors swung open, and the first sight I saw was the robot. It was enormous and backlit with shiny bright lights. Two people were standing in front of it, smiling at me as if I had just won an award. They were so excited about helping with the surgery that it made me excited too, and the last thought I had was that I was absolutely 100% fortunate.

We didn't have a big enough vase.

When I woke up I was in recovery and still intubated, which is not as scary as it sounds. As soon as the nurse saw I was awake the breathing tube was removed and as I gradually came around she started asking me what my pain level was. Once my pain was manageable, I was transferred to my room for the night, and Daniel and my mother were told where I was. My mother came in first, and Daniel came in, very slowly, with the biggest bunch of flowers anyone has ever given me. I must have looked frightening to him with an IV in each hand, an oxygen tube under my nose, pressure cuffs around my legs to prevent blood clots, and my throat sore from the breathing tube.

Daniel left late in the afternoon to pick up Peanut, and my mother stayed for a few hours longer before going home to stay with my son. The first night was rough, but tolerable. Having a laparoscopic hysterectomy is much better than an abdominal incision. I was able to go home after just one night in the hospital, and now I am in my own bed, sitting up, after eating a full meal, and slowly getting back to normal. I am sore from the five incisions that were made along my stomach, where tubes were shunted down through my abdomen so the robot could do its job, but literally each hour is better than the one before.

I lost much more blood than my doctors had been expecting due to the size of the fibroid, but I did not need a transfusion. My hemoglobin levels were very low the morning after surgery, and if they had not improved all it would have meant was one more evening in the hospital. Fortunately for me I am healthy otherwise, eat right, exercise regularly, and am bouncing back just fine. Restrictions include no physical activity of any kind for eight weeks, no driving for one week, and showers only for four weeks.

Yesterday my mother told Daniel about my restrictions on physical activity, and he promised her that he would keep me on a very short leash. He knows that I take my health seriously and want to live as long as possible, and part of living as long as possible includes regular exercise. He also knows that I like to stay busy and have a hard time just sitting. I putter around in his kitchen when I cook, I play with Peanut, and I enjoy being active in general. With that said, however, I could get used to the short leash. I could get used to having someone watch out for me and tell me exactly what my limits are. To hold me accountable when I push too far or take on too much at one time. I think I am starting to like the idea, or it may just be the painkillers talking. Either way, I am very, very fortunate.