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.