Twenty years

Twenty years. 

 

Two decades. 

 

240 months. 

 

1,043 weeks. 

 

7304 days.  

 

175,312 hours. 

 

10, 518, 723 minutes. 

 

631,123,380 seconds. 

 

That is how long my husband, son, and I have lived since I sat in a doctor’s examining room at about 4:30 p.m. on May 20, 2002, and heard the words, “Your son has pervasive developmental disorder, which is on the autism spectrum.” (The hours, minutes, and seconds are timed from 4:30 p.m. on May 20 to 8:30 a.m today, which is the time I began this entry.) 

 

We’d known for a while that something was up with Matthew. We’d been asked too many questions at his three-year-old checkup that we’d answered “no” to.  I’d been asked if Matthew had had his hearing checked. I’d been warned about his behavior in Sunday School. I’d been told by a close friend that I might want to ask his doctor about his speech because he was behind other nearly three-year-olds.  

 

I’d even suspected autism; I don’t know when that word crawled into my brain. 

 

I only remember a few things after that: the PA checking Matthew’s reflexes, the doc saying that we needed to get him set up for speech therapy and needed to figure out if insurance covered it; my snappish remark, “You know what? I don’t care.”  

 

I remember a dinner at McDonald’s, asking my husband, “You know what this means, don’t you?” while Matthew played in the PlayPlace. 

 

I remember a phone call from a friend advising me to take some Tylenol PM so I could sleep that night. 

 

And I remember lying in bed, wanting to cry. 

 

What did it all mean?  

 

Well, for one thing, it meant starting school at three years old, it meant speech therapy, and it meant that the plans and dream I had for Matthew would be changed.  

 

I write this with a mixture of emotions.  When a parent hears a diagnosis such as “autism”, it’s a titanic shift in the way you think about your child. Most of us imagine our kids going to school, to college, getting married, having kids, getting a halfway decent job (although in this day and age, that seems harder) . . . and outside of school, none of that was going to be happening for my son.  

 

I’ve dealt with a mixture of grief and pride, of sorrow and joy, of anxiety mixed with a struggling faith in these last twenty years, however you break it down.  

 

I remember IEP meetings, speech therapy sessions, occupational therapy appointments, talks with teachers, doctors, bursts of frustration in my own therapy sessions and with friends. I remember frustration over lack of child care so that my husband and I could get to therapy sessions. I remember fear of the future, battling with the state over the Katie Beckett waiver, applying for guardianship. Currently, I’m in the waiting period for Matthew’s SSI and suspect it will be another fight there, as well.  

 

And I still wonder about the future.  

 

I feel sorrow over loss of “regular” school, over loss of college, the loss of a possible marriage and the loss of potential grandchildren.  

 

But I would be lying if I said that autism came and stole and destroyed.  

 

The week of Matthew’s diagnosis, I got three phone calls in a row – all on the same day -  scheduling speech therapy, testing for special education, and making an appointment for a brain stem test.  

 

Friends came out of the woodwork with support.  

 

We learned that Matthew could be left alone in the waiting room of our therapist’s office, as long as he had something to play with. 

 

A friend gave us a Game Boy to keep Matthew busy.  

 

Teachers cared about him and cheered his progress.  

 

A dear woman volunteered to help Matthew in Sunday School, and other Sunday School teachers pitched in.  

 

A wonderful youth minister and his staff gave their time and energy to making sure that Matthew would be part of their youth group. That youth group pitched in and surrounded him.  

 

A teacher nominated him for an award, calling him “a joy to teach”. 

 

He learned to do his own laundry and to cook because his high school teachers emphasized learning skills.  

 

He walked in a graduation ceremony.  

 

Four years of college were replaced by four years of a special program to teach him work skills.  

 

And as of today, he’s been in a job for nearly ten months.  

 

Autism, a supposed thief, unleashed a kind, caring little boy who his parents loved and who was loved by those around him. It shaped and formed a man whose tastes range from fast-food chicken nuggets, to meat loaf, to “birthday donuts”.  

 
As I write this, he’s humming the “Law and Order” theme while catching up on “Law and Order” in his room. He watches the Law and Order franchise along with the Chicago franchise, New Amsterdam, and The Good Doctor. The Good Doctor opened many conversations with Matthew about autism; in fact, it was this show that caused Matthew to ask the question, “Do I have autism?” My answer was a (hopefully!) matter-of-fact, “You do.” 

 

He loves Wheel of Fortune and Jeopardy, and mourned the death of Alex Trebek.  

 

And he still holds a soft spot in his heart for Blue’s Clues and Bubble Guppies.  

 

In an hour and a half, I will send him off to work.  

 

In these twenty years, 240 months, etc. I’ve had plenty of tears and anger and worry and anxiety . . . and many more of happiness, pride, elation, and laughter. I’ve often said that life at our house is many things, but one thing it is not, is boring.  

 

There are still questions about his future, mainly, what happens when his dad and I are gone? We are looking into arrangements to answer that question. We deal with the day to day challenges of autism, of understanding his behavior, of understanding his language, of trying to explain the world to him in ways he can grasp.  

 

But, when all is said and done, Matthew remains what his first name means:  gift of God, given to us in answer to a mother’s prayer for a child.  

 

We don’t know what the future holds for Matthew. But we do know that God holds his future. 

 

Just my.04, adjusted for inflation. 

 

Uncomfortably numb

Thirty-one people were victims of mass shootings in the United States over this weekend. 

Of those 31 people, 12 died.

On Saturday, May 14, in Buffalo, New York, 13 people were shot in a supermarket. Ten died. The shooter is in custody, and his alleged motive is something called "replacement theory", meaning, whites are being "replaced" by other ethnic groups. He allegedly (I am using the term "allegedy" for the same reason news outlets due; a person is presumed innocent until proven guilty) drove 200 miles to commit this crime, and he, allegedly, deliberately chose Black people to shoot.  One of those Black people was a security guard, a "good guy with a gun" who shot at the alleged perp; the perp, however, was dressed in body armor and the guard could not wound or kill him.  

Sunday, May 15, was even deadlier.

Five people in Houston were shot at an open-air flea market. Two of them died. The Microsoft News article I linked to said that all five of the people apparently knew each other, that the shooting resulted from an "altercation," and there were at least two guns involved. 

In other words, it sounds like all these people had a disagreement that escalated and someone started shooting.  No innocent bystanders, according to the MSN article, were hurt. But with two guns involved, what are the odds that more people could have been hurt? Could this have had a larger death toll than the shooting in Buffalo?

Next, six people were shot at a church gathering in Laguna Woods, California. One person died. By the time the police arrived, a group of churchgoers had detained and hog-tied the alleged shooter with an extension cord. I give these people props for their bravery and their creativity. And I sit here and think, this is a church. A church, a house of worship where people come to praise God and learn about Him. 

I learned about the last one this morning:  seven people shot in Winston-Salem, North Carolina. News reports have said that these were separate shootings across the area that were all connected. The gunman or gunmen, at this writing, is/are not in custody. 

Thirty-one people.

When I saw the alerts of the shooting in Buffalo, I mentally gasped . . . and then I turned numb. We've had so many mass shootings in the last several years that I'm having trouble calling up shock and outrage for all of them. 

It was the shooting in Laguna Beach that got me angry . . . and then I wanted to cry. 

I've become numb, and I'm uncomfortable with it. 

And I'm also angry, sad, depressed, powerless . . . whatever negative emotion you can put on it.

I go to a church. I have thought about what I would do if someone came into my church and started shooting. I've especially thought about how I would get to my son to protect him. (Yes, he's 23, and although he's autistic, he could probably take care of himself . . . but I am still his mother and my "mom genes" would kick in in that sort of situation.) 

My son works at a supermarket. What would happen if someone came in and decided to start shooting? I will tell my son the three words, "run, hide, fight". First, run; if you can't run, hide, and as a last resort, fight.

There's no place safe anymore, not the open area, not churches, not shopping malls or supermarkets, and not even your own home (think of home invasions). 

Eventually, you can't deal with all of it, and you become numb. You can't feel for everything and everyone, and you develop numbness and empathy fatigue. 

What do we do? I ask. God is there, yes; I believe He will take care of us, but it's also easy to ask, where was God when . . . (fill in the blank with your particular disaster) happened? 

Are more laws the answer?

More police?

More good guys with guns? 

Better mental health care? 

I don't know. I absolutely don't know. 

I just know that I'm turning numb.

And I'm uncomfortable with it.

Just my .04, adjusted for inflation.

Could it have been me?

Like many people, I was stunned when the opinion was leaked that may overturn Roe v. Wade. 

I’ve debated whether or not I should write my own opinions about Roe, and I may in future articles. But as I was thinking, I realized there were at least two instances where I could have been in the position many girls/women find themselves in: pregnant with an unexpected baby and no idea what to do next. 

I grew up in the 1970’s. My entire sex education consisted of a Sunday School teacher telling us that “Fornication is WRONG!” and watching a movie in the 5th grade about women’s bodies and periods. My mother also had a hysterectomy when I was 10, and I knew that meant she couldn’t have any more kids. 

I got my period on my 13th birthday, three years after I saw the movie I referred to, and when I told my mother, she said, “Go put a pad on.” That was it. I suspect now that my mother may have gotten even less sex education than I did. Maybe she had “the talk” with her mother. I don’t know, and since my mother is now dead, I can’t ask.

The first time I knew what a penis looked like was when I went with my parents to a school supply store. They’d just opened a day care center and needed certain things for the kids. We passed by a line drawing of a man in silhouette, which included male private parts. I thought, “Oh, so that’s what it looks like.” 

I had my first boyfriend at 16. I’d never been very popular, so it was a pleasant surprise to me that someone was interested in me. We never went beyond holding hands and kissing. It was after one of our first dates, with hugging and kissing, that I noticed my breasts were a bit swollen around the nipple area. 

I didn’t learn until I was in counseling in my 30’s that that was part of the body’s response to being aroused. No one told me.

In thinking about the Roe decision being overturned, and in thinking about my high school relationship, I asked myself, what would I have done if he’d taken off his clothes in front of me? Or taken off my clothes, all the while telling me, it’s okay, we’re in love, this is what people in love do. Or telling me, if you don’t do this, we can’t be boyfriend and girlfriend anymore.

 I probably would have stared at his body in shock, given that, at 16, I had never seen a man naked. I might have put my foot down and said “no”. Or, perhaps, being as naive as I was, and wanting to keep a boyfriend, I might have gone along with him.

In the movie I mentioned, I did learn about a woman’s egg being released from the Fallopian tube. But I don’t recall the movie saying that “if you have sex at a specific time during your cycle, you can get pregnant.” In fact, I don’t even remember when I learned that part of “having sex” means “insert penis into vagina”. 

In other words, I was very naive at 16, and could have been coerced into having sex. I could have had sex at the proper time in my cycle. I could have been a teenager who’d gotten pregnant due to her lack of knowledge. 

And I could have been a teenage girl who would have either been a single parent, given up a baby for adoption, or chosen to have an abortion. 

Fast forward to 1981. I was in college, 17 going on 18, lonely, looking for friends. I lived in a co-ed dorm (boys on some floors, girls on others) and a boy I barely knew said he’d drop by my room later. My roommate was not there. 

We both laid down on my roommate’s bed, me on top of him. I told him that I wasn’t going to have sex before I was married, and he said, “That’s okay. There’s lots of other things we can do.” We kissed and hugged, and that was all. No one took any clothes off. 

I felt guilty and ashamed the next day, and I remember taking my diary and going off campus to write about what had happened. 

Soon afterwards, I started going to a Bible study and was eventually baptized into the denomination I now belong to. (The specific congregation I was baptized into was not a healthy church. That is a subject for another article.) 

What if the guy had decided he wanted to do more than kiss and hug? What if he’d very gently taken off my shirt, and my bra, and told me that “this is something else we can do without having sex”? What if he’d then taken off his clothes? Suppose, in the middle of arousal and passion, we really had had sex? 

Again, I might have found myself in the position of being pregnant and not knowing what to do, and this time, I would not have had a support system at all. I was new in college, and this episode happened about a month or so after I’d started. 

I could have been that girl who had an abortion to keep my family from knowing what had happened. 

I’m nearly 60 now. I’m married and I have a child, so obviously, I figured out how this sex thing worked. :-) My husband and I were both virgins when we got married. We had some good pre-marital counseling along the way and listened to some tapes about the sexual relationship. I’d also read two Christian books about sex, The Act of Marriage by Tim LaHaye and Celebration In the Bedroom, by Charles and Martha Shedd. 

But my knowledge about sex before that was limited, and my naivete left me open to possible sexual exploitation. I wasn’t taught how my body worked, how certain parts got aroused, when a woman was likely to get pregnant. My religious background taught me that you weren’t supposed to have sex before marriage, and you weren’t even supposed to think about having sex, because if you even thought about sex or having sex, you were committing lust. No one told me that curiosity about sex was normal. No one told me that attraction to people was part of how hormones worked. 

I was married by the time “purity culture” had its heyday, so I wasn’t exposed to the lessons basically shaming girls if they had sex as teenagers, and telling girls that they were responsible for controlling boys’ lust by “dressing modestly”. 

I’m very good at getting on my high horse about what *I* did/didn’t do before I got married, “and look at me now! I did the right thing!”

But, as a teenager, my lack of knowledge about sex, and my naivete, could have gotten me into situations I wasn’t equipped to handle. 

More than ever, after hearing/seeing the stories about girls/women who’d had abortions, or who’d been raped, or had gotten pregnant as the result of a relationship, I realize that this could have been me. 

I could be the person talking about my abortion, or how I had to leave college to raise a child, or how I gave a baby away for adoption. 

It could have been me.

Just my .04, adjusted for inflation.