Guest Post: Getting Up

by Jeff Stimpson

 

About 3 a.m. on many nights I hear my 13-year-old son Alex chortling and talking in his bedroom or in the living room, sometimes even singing. In my bed, I lift my leaden head and crane over Jill to see if there’s a bar of bright yellow shining under our bedroom door. Many nights, there is.

 

Alex, who is autistic, got up in the night a lot when he was younger, and for a sleepless while Jill and I split what we termed “Night Duty.” Who would get up in the middle of the night for Alex and who would get up early in the morning for Alex? We switched. (You do it! … I did it last night! God you just always forget – you are so SELFISH!)

 

Night duty seems to be back. Several times Alex has woken his typically developing brother Ned up by rocking in bed, making the whole Ikea structure creak and weakening the joints held together with little more than a twist of the Allen Wrench. The rocking – back and forth, back and forth, creak creak creak! – is a motion that I’m coming to suspect springs from an urge of Alex’s that I don’t want to talk about yet. For a long stretch of the Night Duty phase, I admit that we left Alex on his own in the living room in the middle of the night. Then last summer he started leaving the apartment, and now I can’t think of sleeping when that ribbon shines under our bedroom door.

 

I wake up around 3 and find Alex on the couch, munching pretzels. Pretzel breath at 3 a.m. ...

 

“Alex, go back to bed!” He does, darting into the shadows. "Head down, Alex!" I see it go down in the dark. I head to the bathroom to take one of my middle-age 10-minute pisses and then weave back to back past the shadows of the dining room table and chairs toward the bedroom. He always pulls this crap around 4:30. By the time I wrestle him to bed and convince him to stop rocking and by the time I can wiggle my toes down there in my own sheets and drown my own thoughts with exhaustion, it’s 0600 and time for the alarm.

 

Then one night at 4:30, for some reason, it hit me. “Alex, do you want to get up now?”

 

He laughed and laughed and laughed while I tugged him to the bathroom. His laughter evaporated when I clicked on the light. “Alex, we’re getting up now. You want to be up, we’re up!”

 

“Back to bed!” said Alex.

 

“No, Alex, you’re up now...”

 

“Back to bed!”

 

“Fine,” I told him. “Fine. Go back to bed or we’re getting up!”

 

Down went his head. I returned to bed. I listened and listened as 0600 neared. I didn’t get back to sleep.

 

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Born Too Soon

Eight years ago, this little nugget came into the world and made me a mother. Born 12 weeks premature and weighing just 2 pounds, he had a rough start in life.

In his early days, we didn't know whether or not he would survive. We took lots of pictures, most of which I am still unable to look at. It was a painful, terrifying time that I actively avoid thinking about.

He was a few days old when this picture was taken. The gold ring in his hand is my husband's wedding band. My son was so tiny, the ring easily slipped all the way up his arm to his shoulder.

It was a time of such intense emotion, words soon became meaningless. Back then, I might have said that I was devastated. But, I'd heard people use that same word to describe a bad hair day or an undercooked steak, rendering the term completely insufficient. At the same time, I suddenly understood what real love is. But, I'll be the first one to admit that I overuse that word myself. I love coffee. But, would I lay down my life for it? Nope.

Once it became clear that my son would survive, I began to worry about the possible disabilities he might develop as the result of his prematurity. Dr. Shrugsalot and Nurse Ida Know were quick to offer absolutely no help regarding this issue. I was left to sort through the dark recesses of my imagination entirely on my own.

I remember standing beside his isolette wondering what he was feeling: Are you warm enough? Are you hungry? Are you in pain? My sweet boy, do you have any idea how much I love you?

That's when the bargaining started. I began to dream of a day when he would be able to answer all of my inane questions. A day when he would be able to talk to me...to tell me what he needed so that I could provide it for him.

If he is blind, I will guide him.
If he is weak, I will carry him.
If he is sick, I will comfort him.
But, please, please, let his mind be okay.
Let him be able to talk to me.

Most of my son's medical issues healed in time but, he was left with significant scarring on his lungs as a result of being on the ventilator. When he finally left the hospital on his original due date, he came home attached to an apnea monitor and an oxygen tank. Getting out of the house was difficult with all of the 'extras' and we came to refer to the combination of our son and his medical equipment as 'the triplets'.

He went on to develop appropriately for his corrected age, which is based on due date rather than the actual date of birth. He rolled over, sat up, walked, and talked right on time. I was, as you might imagine, especially happy about the talking part.

So, yes, it did feel like the ultimate cosmic bitch slap when he developed autism and suddenly lost all of the language skills he had previously acquired.

It has been exactly 5 years since I first uttered those terrible words to his pediatrician, "I think he has autism," and, thus began a new journey for our family.

As hard as this experience has been for me, I am always mindful of the fact that it is infinitely more difficult for my son. He has already faced and overcome more challenges in his 8 years than most people will accomplish in a lifetime.

Tomorrow, we'll celebrate his arrival into this world and I will push aside all of those bittersweet memories. It is the anniversary of the day he made me a mother and, ultimately, a better person -- for that, I am forever grateful.

Happy Birthday, sweet boy!
You are loved more than you know.