Stages

A few years ago, I took Aaron out to lunch. Visits with Aaron are always full of interesting conversations. Some conversations are repeated in a never-ending dialogue of movies, actors, characters, storylines, and producers. The only variance being whatever movie has become his most recent obsession.

Whether it’s one of 25 James Bond movies (for which Aaron can recite the actor playing James Bond, the villain, and the love conquest) or any of five “Brave Little Toaster” movies produced in the late 80’s and early 90’s, Aaron loves to tell me his first, second, and third favorite parts.

Then, he asks about my favorite part of each movie. Since I have probably already lost track of which movie he’s talking about—there is a lot of jumping around to other movies in which a featured actor also played—I often answer, “I’m not sure. Why don’t you choose a favorite part for me?” At which time, he selects my three favorite parts as well!

My favorite conversations are those that give me a glimpse into how Aaron perceives the world. On that day a couple of years ago, he did not disappoint.

“Does Andy have the day off today?” Aaron asked me, knowing I was visiting on a weekday because I had the day off work.

“Andy?” I wracked my mind. “Do you mean your nephew, Andy?”

“Yes. Does he have the day off?” Aaron persisted.

“Well,” I said gently, “Andy’s a baby (he was 8 months old). He doesn’t have a job. He just stays at home,” I explained.

“How long before he gets a job?”

“I think we’ll let him learn to walk first,” I quipped, feeling clever.

Aaron didn’t pick up on the humor.

“Ooh, that’s makes sense,” he said with an exaggerated look of realization on his face, followed by a nod of acknowledgement.

Though, I knew he hadn’t perceived his anachronism. I recognized how hard he tries to converse in ways he thinks portrays maturity. It is common for adults with disabilities to be very proud of being adults and doing grown-up things. I knew he was excited about being an uncle for the first time and loved to talk about Andy.

I was tickled by this interaction. I was already looking forward with sweet anticipation to relating this anecdote to Hanna, Aaron’s sister. Simultaneously, I wondered at the simplicity of Aaron’s world. Sweet, darling Aaron.

By the time Aaron reached 6 months of age, his family physician, Dr. Emtman had added the term Developmental Delay to his medical chart. We continued discussing the developmental questionnaire I filled out prior to each office visit. I never seemed to get very far.   He never held onto me when I picked him up. He did not show curiosity or play with toys. He did not imitate my actions or try to do things I did.

We had all the typical 90’s baby toys. There was Baby’s first keys. He had a toy phone, with a rotary dial. When you rotated and released the dial, it made a pleasant clicking sound as it returned to the null position. A plastic, red string was attached. If the child pulled it behind them on its wheels, it made a ding-ding-ding sound. Aaron had blocks, a xylophone and hammer, and a stacking toy with bright plastic rings. There were chunky, plastic, interlocking toys that went together to form a string. He had toy cars, Duplo’s, and lots of stuffed animals.

Aaron didn’t know what to do with any of them. Every toy became a projectile. When I tried to teach him what to do with a new toy, it was in flight before I could complete a demonstration.

There were fine and gross motor delays. In the first two years of life, we see infants gradually master fine motor tasks, like pincer movements to pick up Cheerios or fish crackers, pointing with the forefinger, hand-to-hand transfer of an object, banging toys together, and opening or closing chunky plastic links or snap-together toys.

Gross motor activities include holding up and stabilizing the head during tummy time, turning the head side to side, rolling over, sitting up, getting up on hands and knees, and crawling.

Aaron wasn’t keeping up with any motor skill development.

He never pointed at something he wanted me to show me. At least, not with his forefinger. By the time he was 2, he pointed at things with his whole arm. He couldn’t manage his secretions, drooling past the age of two or three. Some fine and gross motor development required a year longer for Aaron to master compared to his peers. Some skills were never acquired.

Today, I know when babies typically start developing these skills. When Aaron was four, I started college. I was motivated to understand more about child development. I wanted to know everything I could, hoping knowledge would be the key to solving the mysteries Aaron presented us with everyday. I took classes in Human Development, Psychology, and Abnormal Psychology. Ultimately, I graduated with a bachelor of science degree in Psychology.

Back then, I was so young. Aaron was my first child. I was uninformed and naive.

I wish discussing Aaron’s developmental progress with his doctor had been a positive experience. A give-and-take conversation of confirming my baby was doing all the “right” things at the appropriate times. It wasn’t; it gave me anxiety. Every time we went in, Aaron fell further behind typical developmental milestones.

At first, when Aaron was identified as having developmental delays, I thought it was temporary. For years, I thought he could catch up.

By the spring of 1992, Aaron was about 14 months old. His speech development was not progressing as expected, so Dr. Emtman referred him to speech therapy. I can still picture the assessment in the tiny living room of our single-wide trailer. She sat Aaron down at the coffee table and demonstrated building a pyramid with three wooden blocks. She spoke as she did the exercise. She asked him to watch what she was doing. I held his hands to prevent him from interfering with her demonstration. She did it a time or two. Then, she placed the blocks in front of him and instructed: “now you do it.”

Aaron grabbed blocks in each hand and threw them in her face. Then, he chucked the third block across the room.

What I remember the most was her findings. I had already learned quite a bit as I intently observed the developmental exercises she used to assess Aaron’s skills. Like any other appointment, I was relieved during the visit, unburdening myself, answering questions, and describing what was typical for Aaron. She was kind. Nonetheless, I easily recognized her knowing nods, as she listened and discerned the things that made Aaron unique.

When she told me the now-familiar phrase, that Aaron’s speech development was “delayed,” I had mixed feelings. I felt relieved that her assessment validated my suspicions. Day after day, I knew what I was seeing couldn’t be “normal.”

But, the knot in my stomach tightened. The speech therapist recommended ongoing services. Soon, Aaron saw her for an hour a week. I loved watching his therapy. I soaked up everything she taught him. The therapist gave me exercises to work on with him at home, which helped me feel like I was doing something proactive.

I had a question that persisted through the months, then years. “How long it would take for Aaron to catch up?”

It took me a long time to finally ask Dr. Emtman whether Aaron would ever gain on his peers. I was afraid I already knew answer; still, I kept hoping something would change. I imagined Aaron making some breakthroughs and learning in great strides. It was my secret hope for several years.

By the time Aaron was starting kindergarten, I had the fortitude to ask if a child with developmental delays could close that gap with his peers.

Dr. Emtman’s response confirmed my instincts: “it is unlikely.” At least not when the delays have persisted into the school years. The natural diagnostic progression for a child like Aaron was “developmental delay” throughout early childhood. During elementary school, unremitting delays become “developmental disability,” even “mental retardation.”

If that all sounds very clinical, you’re not wrong. I quickly assumed the nomenclature and terminology common to the medical field and early childhood educators because that’s how my brain works. I never felt these terms were a form of judgement or stigma. I recognized them simply as phraseology that put us all on the same page; imperfect language meant to communicate a tentative framework of challenges we could collectively address.

No term has the power to define an individual. Aaron has certainly never fit into any classic definition or diagnostic criteria. Does anyone?

I hope the description of our journey through infancy and early childhood does not connote hopelessness or disappointment in the child Aaon was becoming. On the contrary. I adored Aaron from life’s first moments.

I am relentlessly optimistic. I awoke each day with a carpe diem outlook, eagerly waiting to see “what can we accomplish today!”

I laughed loud and often. I still do. I took joy in every tiny triumph and every new bit of knowledge. I found hope in my faith, through education, and by accessing new resources.

I remember a friend asking me how things were going with Aaron when he was about 18 months old. I told her life was challenging. Sometimes it was exceptionally hard. I told her about the myriad appointments he had, and about compartmentalizing my days. Focusing on one hour at a time, on a good day. Whatever specifics I told her, I remember summarizing my account by saying: “I know God did not send Aaron to earth to fail! So, it’s my job to do everything in my power to help him succeed.”

That is exactly what I have done. Every day is a new day. I get up. I try, and try some more.