When Dylan was a toddler, he had a hard time saying his Rs, especially at the end of words. As a result, “car” sounded like “cah,” “soccer” sounded like “soccah,” etc. It was kind of adorable and we joked that he had a “Bahstan” accent just like his Grandpa Barry.
Now, we know it wasn’t just adorable. It was a speech articulation issue most likely due to sensory processing disorder (SPD). When he was diagnosed at age five, it was difficult to imagine fixing everything that was wrong. I was relieved to know what we were dealing with and confident in the care we received, but there were days when I was so daunted by what needed to be accomplished or weary from endless appointments or disappointed by his regressions or worried about the financial cost of it all or heartbroken by everything he had to endure (or all of the above) that I wanted to quit. I wanted to just believe he’d grow out of it. All of it. I wanted to leave him alone and be left alone.
Six months into twice weekly occupational therapy sessions, for which I had to pull him from school in the middle of the day because there was a waiting list for the coveted afterschool appointments, we were instructed to begin speech therapy, which would add more appointments to our already hectic therapy schedule. When I finally contacted the speech pathologist and explained the language “tics” that concerned us but that we also thought were endearing, her response was: “Well it might be cute now at five, but it won’t be when he’s ten.”
It might be cute NOW, but it won’t be WHEN…
Her words were difficult to hear. They caused an implosion of blame and guilt and anger and responsibility and truth from deep within my core.
Thank God she said them.
In that moment, I grasped with great clarity that I had to get real about Dylan’s challenges – no matter how demanding they were – because eating macaroni & cheese at every meal, refusing to wear long sleeves or long pants, saying “wacecah” (racecar), and fearing bounce houses, flushing toilets, swings, going upside down, being alone, and putting a shirt over his head (to name a few) – would be down-right dysfunctional when he was ten. Or (gulp) fifteen. Or (holy crap) twenty. My actions would shape his future, and it was my responsibility to do everything possible to give him the best shot at being as perfectly imperfect as everyone else.
I wasn’t in denial about what was wrong with him on our long and winding journey with SPD. After all, it was me who searched and probed until I found answers, doctors, and therapists who saw what I saw and felt what I felt. It was me who built the support system we needed (and shed everyone who stood in our way). It was me who managed his care, took him to each and every appointment, and incorporated his behavior modifications into our daily lives.
But I wasn’t perfect.
It took me over two years of hoping for the best before I finally trusted my gut and sought out the diagnosis I that knew in my heart was there. It took a solid week of crying and watching “Bridget Jones’s Diary” on a loop before I made calls to get his therapies started. Down the line, I procrastinated calling the speech therapist (and later the food therapist) that spewed the harsh words I now hold so dear. I waited and cried and avoided because I wanted so badly for my son to be normal. I didn’t want him to be different from the other kids, and I didn’t want to fully admit that it was happening, but he was different and it was happening.
It’s been two and a half years since the diagnosis, and even though his transformation has been astonishing, he has lingering visual processing issues, which have made learning to read and, more importantly, enjoying to read a challenge. I worry about reading comprehension, standardized tests, and schoolwork that has to be done solely on the computer, I’m concerned about his tendency to get overstimulated or zone out, and I still agonize about his limited diet, which more than anything else makes me think, It might be cute NOW, but it won’t be WHEN….
SPD or not, we all worry about Nows and Whens. Will the NOW strong-willed and demanding little girl become a skilled decision maker WHEN she’s an adult? Will the NOW timid little boy who puts other children’s needs ahead his own become a pushover WHEN he’s an adult? Will the child who NOW fears the way things smell, feel, taste, sound, and look be capable of living a happy, healthy life WHEN he’s an adult?
During one of many conversations with Dylan’s occupational therapist about his fears, especially of food, she asked me, “What do you want?”
I responded, “I want him to eat an entire pot roast.”
She laughed and asked, “What do want Now?”
I said, “I want him to sit in a chair at the dinner table for five minutes without having a tantrum.”
She said, “Okay, let’s focus on that, and we’ll tackle the pot roast later.”
It’s okay to be conscious of the Nows and Whens – as parents, we have an incredible responsibility to bare – but it’s important to not get so wrapped up in fearing When that we fail Now.
Eventually, Dylan did sit at the dinner table. He’s yet to eat a pot roast, but Now his Rs sound flipping amazing, and you should see him on the ice in full hockey gear trying his heartest to get better, faster and stronger. His grades at school are excellent and he’s well-liked by his peers and did I mention that he was voted “Class Clown” in Kindergarten and that he wouldn’t let me walk him into school on the first day of first grade because he wanted to do it all by himself and I’m about to blow your mind because a few weeks ago he went to his first-ever sleepover and had the BEST NIGHT EVER. (A sleepover!)
Every day I spend as a parent is a humbling lesson in accepting (and occasionally delighting in) the Now and having the courage to believe the When will turn out okay, which brings to mind something Riley often says to me: “Don’t worry, Mommy. It’s okay.” Unless a Sharpie or a shovel is involved, it usually is.
What’s your Now and When?