"Normal" Is A Dryer Setting

Parenting A Child On The Autism Spectrum


Leave a comment

The Beautiful Surprise

She discovered with great delight that one does not love one’s children just because they are one’s children but because of the friendship formed while raising them. ~ Gabriel Garcí­a Márquez, Love in the Time of Cholera 

Parenting has no road map because it is a unique experience for everyone involved. No two relationships are the same, and what works for one child may not work for the other. As we go through life, each of us continually becomes reshaped and redefined based on our environment and our experiences. To have an end goal for raising a child often feels like a moving target to me. When all is said and done, this is what I want for my son Tim:

I want my son

To become a responsible adult

Who is capable of holding a job and living independently

And enjoys life to its fullest

Surrounding himself with people who love him.

As Tim’s mother, I by default am one of those people who love him, and I certainly hope he wants me to be around him. Tim and I have fun together, for example

Tim and me on the way to my youngest brother's wedding.

Tim and me on the way to my youngest brother’s wedding.

We were just getting started on that afternoon. What I love most about being with Tim is that he and I share a special connection. We understand each other’s jokes, moods, body language, and communicate both verbally and nonverbally. We are in sync. We get each other. One afternoon, when I walked through the front door after a long day at work, Tim took one look at me and said, “Mom, you need a hug.” Then this teenager who has a personal space bubble the width of the Grand Canyon proceeded to walk over, put his arms around me, and squeeze. I looked up at him, my son, who is now inches taller than I am, and said, “How did you know I needed that?” He just knew.

Tim and I no longer have a parent-child relationship the way we used to when he was younger. He is the most well behaved teenager I have ever met. When I was fifteen years old my parents probably thought my primary objective was giving them heads full of gray hair and worry lines across their brow. Not the case with Tim. As a result, the relationship he and I share is evolving into something quite unexpected. We are becoming friends.

Being my son’s friend is a strange concept to me. I have always approached our relationship as his parent, which means that I am his

“Friend” was never part of the relationship until recently. Many of the words that I used to define my role as Tim’s parent also overlap with synonyms for friend, such as

Supporter

Advocate

Confidante

Encourager

While I will always be Tim’s parent, the added dimension of friendship provides a depth and roundness to the love that already exists between us. Seeing the first buds of friendship in the relationship that Tim and I share is a most wonderful, delightful, delicious surprise. One of the best that life has offered so far.


1 Comment

The Witness

Marriage is like a cage; one sees the birds outside desperate to get in, and those inside equally desperate to get out. ~ Michel de Montaigne

I take marriage for granted. In the United States, I, a woman, can marry the man of my choosing practically anywhere, anytime, and by anyone. I can elope in a heartbeat or plan an elaborate ceremony with a ten-tiered cake and five hundred guests. I can have one of my girlfriends perform the ceremony since she received her ordination online to officiate another girlfriend’s wedding a few years ago. Or I can be married by a priest, a minister, or a justice of the peace. I can also choose not to marry, which I have done by being extremely selective about the men I become involved with. The minute one of them brings up the prospect of a future, more children, or finding their soul mate to share their life with until death do they part, the date and any potential relationship for me is over. As my boyfriend puts it, I am a strange bird.

Even though I have no intention of remarrying, I am all in favor of other people’s weddings. In the past three years I have seen both of my younger brothers marry kind, intelligent, lovely women who are well suited for them. My sister will find her person eventually, but she has an entire lifetime ahead of her to do that. Several years ago I had a female coworker who moved from South Minneapolis to San Francisco so she and her partner stood a chance of being able to be legally wed. After marrying in 2008 when same-sex marriage finally became legalized in California, they had a son together and now live very happy, quiet lives.

Minnesota joined California on August 1, 2013, when Governor Mark Dayton declared this date as the “Freedom To Marry Day“. The Freedom To Marry bill that was signed in May at Minnesota’ State Capitol went into effect, and the exclusion of same-sex marriages came to an end.

I have remained silent and relatively unopinionated on the topic of same-sex marriage in general. I believe in marriage as an institution, and I believe that everyone deserves love and a healthy relationship. I have seen friends in unhealthy marriages choose to divorce, and I have seen them choose to remain in the marriage. I have seen friends who are looking for their one true love in life, and sometimes they find that person and sometimes they don’t. I have seen friends marry in response to their biological clocks, which tell them it’s time to start a family. The State of Minnesota also seems to endorse marriage in general, since married couples tend to have better tax breaks, better interest rates when purchasing a home, and more of a social life. I can say this because I have lived in Minnesota both married and unmarried, and it’s two completely different worlds.

Then there are the couples like my coworker who moved to California with her partner because she knew she would be able to be married there sooner than here. We always want what we can’t have, don’t we? Going into something as binding as marriage comes with risks. People’s personalities change over time. People become physically sick or mentally ill. People meet other people. Finally, some people leap before they look, and decide after that the view isn’t quite what they expected it to be. Being denied what you want can be beneficial. It gives you a goal to work toward, and you appreciate what you have when you finally have it.

The wedding venue, overlooking the St. Croix River which borders Minnesota and Wisconsin.

The wedding venue, overlooking the St. Croix River which borders Minnesota and Wisconsin.

I saw this type of long-awaited appreciation this past weekend when I stood as a witness for a marriage that two people had been waiting to legalize for fifteen years. The wedding was simple, with the judge, his wife who took pictures, my boyfriend, myself, and the couple. The judge and his wife own a home which overlooks the St. Croix River, and the morning was blissfully cool with bright blue skies. When I arrived at their home, the judge asked me if I was one of the witnesses, and I told him, “Yes, I am the best man.” The judge was originally from Boston and still had his accent after all these years, which was great when he started the ceremony in a booming voice to let the St. Croix River Valley know that two life partners were finally becoming legally united. The couple wrote their own vows, and my boyfriend teared up as they were exchanged. I cheered when they sealed the ceremony with a kiss.

The newly married couple had decided to spend the rest of the day hiking in Taylors Falls. They have no honeymoon planned, despite my gentle urging. For them it was back to life as usual, which is how it should be. They knew each other, they knew their relationship, and they knew that they wanted to be together for the rest of their lives. There were no surprises. What I saw were two human beings who had already been one in mind and spirit for quite a while. I also saw two human beings who were best friends, which is a critically important piece of romantic relationships. This wedding, as simple and speedy as it was, reinforced my belief in true love, companionship, and the beauty of being alive. It opened a small crack in my own mind that some day, marriage may be for me again. Just not this moment.


Leave a comment

The Purple Door

To Everything (Turn, Turn, Turn)
There is a season (Turn, Turn, Turn)
And a time to every purpose, under Heaven

~ Byrds

I am in tears because one of my best friends has no idea what she and her husband are walking into. Here is her note:

Hey, Stephanie! I have a question that only you can answer for me. I’m meeting my brother’s daughter for the first time. She is 4, has been neglected by her mother, and has a mild form of Aspergers, where she doesn’t handle change well, that sort of thing. There is the possibility that in the future I may wind up with custody of her, so I want to make a good start in our relationship. Any suggestions?

My friend's front entryway.

My friend’s front entryway.

I replied I will call her so we can talk on the phone instead of emailing back and forth. We’ve known each other for over two decades, and even though she lives near Chicago and I live near frozen tundra 10 months out of the year, every time we see each other it’s as if no time has passed at all. As usual, my friend is generous, open-hearted, always willing to help, and very trusting, all of which are reasons why I love her. She has lived all over the world, starting in Iowa, then Sri Lanka, then high school in India, then Taiwan, then settling down after she got married. She is an individual, her own person through and through, and every time I visit her home I think to myself how she is the only person I have ever met who deliberately painted her front door in her favorite purple. Her life experiences helped her at times counsel the people who moved in and out of her life, much like my experience with Tim allows me to give her advice on an extremely important decision.

She is making me coffee. Daniel only recently figured out that I love all people who make me coffee.

She is making me coffee. Daniel only recently figured out that I love all people who make me coffee.

What breaks my heart is that she doesn’t have to do this. She doesn’t have to take custody of this child. There is the choice to say no thank you very much and watch her young niece struggle from afar. But she is like me and we cannot turn our backs on the people who need us the most. Her life, and her husband’s, and her two son’s lives will be extraordinarily different from what they were before Young Little Miss. I say extraordinarily because having a child with special needs stretches yourself in ways you didn’t think were possible. You learn that love has no limits, no boundaries, and you find yourself with endless amounts of patience, humor, smiles, and goodwill. You never take anything or anyone for granted again. You never assume that a child throwing a tantrum in the middle of the grocery is a result of poor parenting. You stop judging the world around you and simply accept life as it is, with all its beauty.

To one of my best friends in the whole wide good green world, I love you so much. You never fail to amaze me.


Leave a comment

The First Year

Don’t cry because it’s over. Smile because it happened. ~ Dr. Seuss

This has been a horribly stressful workweek, complete with lab tours, presentations, three-hour-long practice runs for the presentations, last minute changes to the poster for the lab tour, and hunting down lab tour prototypes to show to our new upper manager. On top of that Tim is in a new classroom this week, decided to hide his homework from me in his closet, and missed the van this morning. He missed the van because they changed the pickup schedule without telling me, so I drove him halfway across town to school before going to work. Today at work I was on the phone and email, sometimes simultaneously, with the van transportation guy and Tim’s teacher, trying to figure out the pickup situation and whether Tim did indeed hide his homework. Some work fortunately did get done in the midst of everything.

But then, in the middle of all of this, there is a Groupon for a photo book from Shutterfly that expires next week. In my evenings this week, I have been putting together an album of baby pictures from Tim’s first year. I was unhappy, stressed, slightly angst-ridden, feeling sorry for myself, until I saw

this

Last ultrasound the day Tim was born.

and this

Ready to rock and roll.

and this

Smiling at four weeks!

and this one

Rolling over.

and oh my I do love this one

Learning to push up.

and how Tim would follow me around the house

Crawling.

until he discovered the fish

Multitasking. Sans pants.

and then he was pulling himself up on everything

Happy boy.

and so utterly ebullient when I would walk into the room

One of my absolute favorites. He would jump for joy when I walked in the room.

then he started to grow old enough to focus

We loved to read.

and Tim saw bubbles for the first time

One of Grandma’s favorites.

and spring came and we spent all our time outdoors

Slide!

and we started catching up on our sleep (and housework)

Helping mom fold the laundry.

and Tim turned one year old

One year old!

in what now seems like the blink of an eye.

And nothing else, apart from my child, really matters anymore. He is the best part of everything.


Leave a comment

From Texas To Turkey

We don’t even have to try / It’s always a good time. ~ Owl City & Carly Rae Jepsen

One of the longest wedding kisses in recorded history.

My baby brother is officially married to his girlfriend of eight years. In the next two months they will relocate from Indiana to Texas, then within a year or two a second move from Texas to Turkey. The world is a big place, as these two Hoosier natives are about to experience.

Sixteen members of my family gathered together to help my brother start his new life. We drove in from Illinois, Florida, Missouri, Michigan, and Minnesota. The night before the wedding my parents hosted us all for supper, where we grilled on the porch and sat around in a semi-circle of folding chairs in the back yard. I had not seen two of my cousins in over a decade, and we decided it was high time for a reunion. We used to see each other several times a year, including two weeks every summer where we went camping in northern Michigan, and too much time had passed now that we were adults with busy lives.

This is a really good photo I borrowed courtesy of http://www.tripadvisor.com.

In case you are unaware, Hoosiers know how to throw a good party. The wedding ceremony was at beautiful Lakeside Park & Rose Garden, and it was wonderfully simple and to the point. When I called Daniel last night to fill him in on the details, I told him the ceremony itself lasted about 20 minutes. His only reply was, “20 MINUTES?!?!? THAT’S ALL?” and I said, “Yes, it was short and sweet because the marriage is the important part for this couple, not the wedding.” Then I told Daniel about the reception, where the festivities really got started. The entire evening was very casual, unrushed, and yet somehow extremely organized. This left all of us in my family free to mill around, talk, catch up, and hang out, which is what we do best. My father also had the opportunity to visit with friends he met decades ago but whom had since moved away.

The reception.

The reception was held at Goeglein’s Homestead on Maysville Road, a hop, skip and jump down the street from where I spent kindergarten through eighth grade in the same school building with the same students, Goeglein offspring included. If you are in the mood for an outdoor shindig, you can reserve the Garden Grove which is nestled in six acres of ash, pine and birch trees with two open air structures. Goeglein’s also has a catering business where they will bring their salads, roast dinners, and desserts to you.

So how did Tim do during all of this? During all of meeting family members he didn’t remember, being surrounded by hordes of people, and having his schedule shifted around when he least expected it? He did great. Actually, he soaked it all in. One night this weekend included my other brother and his wife taking Tim on a midnight run to Taco Bell, where my brother tried to order in Spanish at the drive thru only to be faced with a non-Spanish speaking Caucasian American at the window. Tim is more adaptable than I give him credit for. I met my father for lunch today at Biaggi’s Ristorante Italiano in the Jefferson Pointe shopping center, and he commented on how Tim is talking more and being more social than he has been in the past.

I can’t help but wonder how my newly married brother and his wife will adjust to life overseas. Will they love it? Will they detest it? Will they miss their home country? Will they become world travelers? There is an enormous difference between visiting a new place and becoming a permanent resident, even if it is for an impermanent period of time. I cannot imagine two places more different than Texas and Turkey, and yet I have close friends from both locations who have both settled in…Minnesota of all places.

Tim’s entire world is one of constant displacement. He doesn’t realize this because he knows no different. He has always been a Texan living in Turkey, or a Turk living in Minnesota, or, well, you get the idea. Every time he sets foot outside our front door, he is continuously adjusting to a setting that is unfamiliar to him. I agree with my father that Tim is doing amazingly well, especially now that he is 14 and, as a teenager, is supposed to be angst-ridden, which he is not. I take that as an indication that Tim will fit himself in wherever he lives, however foreign it may seem to him. As will my brother and his wife, for whom I wish the very best that life has to offer.


Leave a comment

Cupcakes

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away. ~ Henry David Thoreau, Walden

Make a wish!

This week Tim turned 14 years old. I’m not sure where the years have flown off to. Before Tim was born, I spent a large portion of my time wondering what his face looked like. After he was born, I wondered what he would look like in three months. Then I wondered what he would look like when he started walking, then when he started school, then when he turned 10, and so on.

Now Tim is almost as tall as I am, despite being a string beany teen he weighs close to what I do.  I tell him that soon he will be taller and stronger and heavier than I am, and eventually he, the Protected, will become the Protector. Tim claims not, but he knows our roles are gradually changing with time.

So what has my big 14 year old young man been doing with him summer vacation? Why haven’t I been blogging away with our travels and grand adventures? Because there isn’t much to write. Since school let out, Tim has been sleeping. A lot. An inordinate amount. On his birthday, for example, I came home after lunch to spend the afternoon with him. He was sleeping when I got home. He slept all afternoon, until I finally woke him up at 5 pm so we could go out for supper. When we came back from supper, Tim nagged me about not spending enough time with him. I told him he needs to be awake in order for the whole spending-quality-mother-son-time-together thing to happen.

I am actually really glad that Tim is catching up on his sleep. My friends and coworkers ask me how he has been spending him summer. I tell them that for now he is relaxing at home, which is what he is doing. Tim spends nine months of his year at school, which is an extremely stressful situation for him. The three months he is off on summer break are for regenerative purposes, and I usually don’t push him too much with the extracurricular activities.

Tim wanted a quiet birthday at home this summer. In the past we have gone roller skating, set up playdates with his classmates from school, seen a movie, gone to a park, or done one of a myriad of other activities. Tim’s birthday is actually during a perfect time of year, where the weather is usually gorgeous, there is no school, and people haven’t started their family vacations yet. Everyone is still in *exhale* mode from the academic year. The only reason why we went out for supper was to use a Groupon that expires next week.

For me, the best part of Tim’s birthday was seeing him calm, content, and enjoying himself. I am glad he is catching up on his sleep, and that he is decompressing from his school year. I have discovered that sometimes the best way for me to help him is to let him go at his own pace.


Leave a comment

Fragility

I watched you disappear. ~ Little Talks, Of Monsters & Men

I have been procrastinating and decided on my way to climbing tonight that I am not going to procrastinate any longer. Even better yet, while my new climbing partner and I were harnessing-up, if that’s even a term, here is how our conversation went:

Me: So are you a student?

New Climbing Partner: Yep! Full time!

Me: What are you studying?

NCP: Biology.

Me: Oh, hey! That’s awesome! My degree is in cancer biology!

NCP: No way!

Me: Yeah, but I don’t do much of that at my current job. Right now I’m working on wound healing, which is on the opposite end of the spectrum.

NCP: Whoa…that sounds really cool.

And then it was time to climb.

My father (on the right) posing with one of his younger brothers when they were teenagers.

I meant to write on Sunday, when it was Officially Father’s Day, but I didn’t. I didn’t write on Monday, or Tuesday either. Over the years I have become a skilled practitioner at the art of putting things off, and this entry is definitely something that I have been avoiding. I sent my father a card, and called him on Sunday, and emailed him this morning about how I need to replace my furnace, but I just couldn’t bring myself to write on Father’s Day.

Whenever my father and I talk on the phone he asks how work is going. Lately work has been going splendidly well. I am discovering that I love working on wound healing, even with the gory pictures. One of the scientists our team collaborates with at the University of Minnesota told us that she uses Post-It notes to cover up the patient photographs when she reads journal articles related to our project.

I cannot push my team fast enough on this project, and it is beginning to become an underlying source of frustration for me. They are all working their buns off, spinning their scientific wheels some days, having successful experiments on others, but nothing will ever be soon enough. One of the markets that we are targeting are people who have small, nagging, slow to heal wounds, such as diabetic ulcers, road rash, skin tears, burns, and so on. These wounds are irregularly shaped, non-incisional, and often occur in the elderly, the immunocompromised, and people whose health is poor in general.

When I talked to my father a month or so ago I asked him what he uses on his wounds. He told me he uses the New-Skin Liquid Bandage and I tried not to let out a groan since it’s probably not much more than superglue.

My father has palindromic rheumatism, which is a rare form of rheumatoid arthritis that occurs in less than 1% of RA patients. The infrequency of this disease makes it difficult to study since the patient population is so small. The rheumatism itself doesn’t make my father’s skin fragile, but some of the medications he takes do. His skin is like tissue paper. One year when I was visiting him and my mother he flexed his arm and his skin tore. Spring roll wrappers are stronger than my father’s epidermis.

The hard part for me is that I can’t fix this. As both a scientist and a daughter the desire to make everything better is overwhelming. Frustratingly enough, I can’t really do anything at all. My father is organized to a fault and has everything in order. He has and will continue to support my mother for the rest of her life. His house is paid off. He has no debts. He has an extensive network of friends and contacts where he lives whom I have witnessed will drop anything at a moment’s notice to help our family out.

There’s nothing left to do but enjoy the time we have together, and that is a wonderful gift. Here are the times that I have begun to appreciate more due to my father’s influence:

  • Time with my son Timothy. It doesn’t matter what we’re doing.
  • When one or both of my cats decide to snuggle, even if it is 4 am.
  • Running along the lake on a perfect spring day.
  • Cooking one of Daniel’s favorite meals, and then watching his delighted reaction when he sees his plate.
  • Being grateful for my health.
  • Chats with my girlfriends during our monthly suppers out.
  • Watching chickadees at the bird feeder in front of my kitchen window.
  • Picking strawberries from my garden.

Happy Father’s Day, Dad! I love you!

For more information on palindromic rheumatism, please visit the following links: