When parents receive a chronic or life-long diagnosis for their child they find themselves experiencing a mixed bag of emotions. At the time of our son’s diagnosis, we had multiple people tell us “at least he doesn’t have….” We agreed. We were grateful he didn’t have these other diagnoses, but it didn’t make us any more thrilled of a moderate-to-severe autism diagnosis. And while the diagnoses themselves can’t (shouldn’t) be compared, I imagine the presence, perhaps not to the same degree, of paralyzing worry, fear, and feelings of helplessness are universal for parents at the time of a child’s chronic or life-long diagnosis.

Weeks can feel like years. Thoughts of the diagnosis and unknown are ever present, ever heavy, and ever consuming. Life moves in slow motion. Contrastingly, years can feel like weeks. Instead of living from day-to-day, you find yourself wanting and successfully fast forwarding yourself to the next milestone test result or appointment. During that time, everything else in life is peripheral, incidental. Once that day comes, regardless of the news received, parents at least feel like they can move on and move forward.

Recently, I found these notes about my son’s diagnosis journey:

18-months-old: The “elephant” in the room at our family Christmas. It was abnormal for a child his age to not be talking much. It was abnormal for a child his age to sit and watch the washing machine for 30 minutes at a time. Toys that were age appropriate and full of lights and sounds led to meltdowns in the corner of the room and refusal to socialize any further.

19 months: Hearing test was the place to start. Rule out any hearing issues. Test revealed that his heard was “exceptional.”

20 months: Started early intervention therapy because of noted delays. Developmental and occupational therapy.

22 months: Gently demanded speech referral from pediatrician. Had asked at 15 months but was told to wait. Something ‘magical’ happens around 20 months with speech, we were told.

23 months: Speech evaluation at Riley. Expressive speech(what he could say) of 11-month-old. Perceptive language(what he understood by pointing to pictures) of 26-month-old. Considered at-risk for autism after a brief autism screen. Come back in five months. In the meantime, begin speech therapy. Referral given for a nearby hospital.

24 months: Speech evaluation at nearby hospital to begin speech therapy. His speech and social interaction was “typical.” 1 hour evaluation: $467.00. Does this now mean he isn’t delayed? That we don’t have to worry about an autism diagnosis? Now what?

28 months: Still pursued Riley recommendation for additional testing. Multiple autism diagnosistic tests and more speech tests. An official Autism Spectrum Disorder diagnosis and expressive and perceptive speech delay diagnosis.

10 months that flew by. 10 months that felt like an eternity.

Now we move on. Now we move forward.

Early on I realized that I had to pace myself. The answers wouldn’t come immediately. It was excruciatingly painful to be patient, but deep down I didn’t want them to come right away. A quick fix is never best. I would learn over time. That time would bring me experience and wisdom. Or at least that was my hope.

Below is an excerpt that I wrote five days after our son’s diagnosis:

The psycholigst delivered the news with a smile. We were perplexed. Why was she smiling? Did she know something we didn’t? Did she know he’d be just fine? Is it some werid reverse-psychology: smile at someone when you deliver then life-altering news and they will feel a little less anxiety? But, she had JUST told us that he may never be able to communicate with us. She had JUST told us she didn’t have a crystal ball and couldn’t predict the future. How in the world could she be smiling when she spoke the words that made our stomach drop and our heads spin?

Regardless, I’m glad I recorded these clear thoughts at what was a very confusing time. It was this chosen mindset that led to, over time, our healing, our hope, and our very affectionate and talkative young boy:

“We’ll learn to make changes as we go. I’m sure down the road we’ll look back at some things and laugh at or shrug off some of the mistakes we’ve made. It’s all a process.

I’m writing on my iPhone while my husband and our Little Acorn play in the falls. I don’t have a pen so I had to use my phone. Today is five days after we received his diagnosis. We needed a “free day,” one without thinking about “it.” We needed fresh air.

I’m receiving judgmental stares as I “type” on my phone on this picture-perfect, fall day. The three of us have already tromped over a mile through the water. My stomach hasn’t been feeling well so I needed to sit out for a bit, plus, I felt inclinded to write. I had to get it out, because I couldn’t scream or cry in front of him.

It’s a process like everything we’ve been through lately. Getting grips on my chronic medical diagnosis. Then two weeks later getting grips on our Little Acorn’s Austism Spectrum Disorder diagnosis.

It’s a process. Anderson Falls. Blue skies, hard breeze. Little Acorn is nervous to get in the water at first. Then he let Dad hold him. And by the end he was chest deep and jumping with both feet into dark, murky water. Walking to the cliff’s edge. Some caution. But no fear and no worries. His curiosity leads him. I’m confident this is how he’ll power through life. Autism will not hold him back. Maybe that’s some of the beauty of the disorder—power right through. Senses are strong, so are his willpower and bliss.

As his mother, some days I feel like I’ve been given more than I can handle. Some days I feel like I can. Some days (hours) I feel like I can’t. But grace tells me that I can and should and will. We will be better because of it:

we: the two of us (mom and son)

we: the three of us (mom, dad, and son)

we: the four of us (our family of three and God)”

A couple of days prior to what would soon be this monumental afternoon at Anderson Falls, I had reminded myself of an old quote that I’d had forgotten since childhood. I was grasping for anything. I needed some reassurance even if a reminiscent quote seemed like a silly source.
“From small acorns, mighty oaks grow.”

Our little boy was small. He could be our hypothetical acorn that we would help grow into a mighty, strong, communicative, self-sufficient oak someday. I explained it to my husband. He humored me by listening and agreeing with the potential comparison. It would work for now.

Then that day at Anderson Falls. Our son. The one with moderate to severe autism. The one who may not be able to communicate with us. The one who rarely appeared as though he was listening, bent over at the edge of thhe water and picked up an acorn. And what did he say?

Yep, we heard it loud and clear. Over and over again as he picked up each acorn.

“Aco[r]n[s], G[r]ow.”

“Acon. Gow.”

“Acon. Gow.”

You’re right, buddy! Acorns grow.”

Our eyes jolted to each other. I didn’t have to finish my sentences.

“Did he just say…” My husband, “Yup, he did.”

“Did you tell him about the acorn, oak….” My husband, “Nope.”

“Was he in the room when we were talking about that?” My husband, “Must have been.”

He was in fact our little acorn that will grown into a mighty oak. But our “job” just became exponentially easier. He was NOT the one who needed to do the learning. It was us. He was present. He was learning. He was LISTENING. Now we just had to listen to him—even if it didn’t come in the form of words.