Passion for the Climb

Driving toward hope


By Kristin (McCarthy) Macchi ’90

“What’s that car, Mom? Is it fancier than a Lamborghini? Is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? Is it fancier than a DeLorean? Corvette? What’s the other one? The one they have in California? Oh yeah, the Hummer stretch limo?”
    The questions come relentlessly. Quickly. No matter how many times I answer them, they come back.
    It’s only 8:30 a.m. I’ve been in the car for a half-hour, after a frenzy getting my sons, James and Johnny, ready. I’m already tired. We have another half-hour before we get to school. James will fire these same questions at me the entire time.
    What answer did I give yesterday? I rack my brain, trying to remember the list in my head of the Order of Fancy Cars, but I can’t. My brain doesn’t work like that.
    His brain does.



Kristin Macchi ’90 — pictured with her husband, Tony, and their sons (from left) Johnny and James — is working to turn her group D’MAC (Determined Moms of Autism Spectrum Children) into a nonprofit. She blogs about her family’s experiences at runningtobestill.blogspot.com.

    James collects information and catalogs it. He remembers ALL of my answers. If I get them wrong, he tells me.
    I try to take a sip of my coffee at the red light. “What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?” It doesn’t matter that we’ve never seen many of those cars on the road, only at the car show. He has to go through his list.
    Asking James to be quiet is not an option. Only a few years ago, we were begging for this. For him to be interacting. It seems like just yesterday this trip always included him screaming to go a specific way, only for “BLUE HOUSE-BLUE HOUSE-BLUE HOUSE-BROWN HOUSE-BROWN HOUSE-BROWN HOUSE-BLACK HOUSE-BLACK HOUSE-BLACK HOUSE!”
    If I had to take a different road, it meant a meltdown.
    We’ve driven this route more than a thousand times in the six years since James was diagnosed on the autism spectrum of disorders (ASD) at age 2. At the time, I had no idea what autism was, or what it was going to mean for our family. Autism affects each person differently.
    For James, it means anxiety, repetitive behaviors, and sensory overload. The world around him has always been too loud, too fast, too bright, too confusing. He needs instructions broken down into one step at a time, and he needs time to process each step in a way that he can understand. Routines are necessary. As difficult as it is for two type-B parents and a loud, energetic younger brother, he needs us to make our lives as predictable as possible. My husband, Tony, and I had to learn to anticipate each potential scenario, to be ready for James’s reaction. “If-Then” causalities became part of our every thought process.
    When I first started driving these roads, whether on the way to occupational, speech, or social skills therapy, or to school, I would look at James through the rearview mirror and start to cry. I didn’t know how to give him what he needed, and I was frightened about the future. I didn’t even know if he would ever talk, except to repeat the same phrases.
    Then I would realize that he didn’t even notice I was crying, and that would make me cry harder.
    Now, every morning, just when our long ride to school starts to get to me, I think of how far we’ve both come since then. He’s having conversations and making friends. He spends more time playing than going to therapy. He’s learning how to deal with surprises. The cataloging — of cars and all other information he receives — is his way of bringing order to the chaos he perceives. Of trying to understand how everyone else thinks. He’s working so hard, and making tremendous progress.
    I’ve come a long way as well. To help provide a voice to the families of 11,000 students with disabilities, I volunteer on the Boston City School District’s special education parent advisory board. James attended four schools in five years; I fought for a year to get him placed in a small inclusion school (integrating special education and mainstream students) that goes through 12th grade, so he won’t have to switch schools again. During a city-wide forum on improving the district’s inclusion program, a flow chart of James’s school transitions was presented. It led to audible gasps — it was the first time many school administrators and city officials actually saw how children with autism were falling through the cracks. More stable pathways with fewer transitions were developed as a result.
    My support group, D’MAC (Determined Moms of ASD Children), got our local YMCA to offer swim, gym, and after-school programs for children with autism and their siblings. We are planning to develop a resource center for families.
    Through social media, I’ve built personal relationships with other parents I’ve never met, and I’ve been blogging about our journey. People tell me that reading our story makes them feel they are not alone. My fear has turned into strength, and I’ve developed a voice I never knew I had.
    We’ll be driving this same road to school for the next 10 years. I don’t know what each ride will bring, but I’m looking forward to it. I take a big gulp of coffee and remind myself to actually print out a list for the next ride so I don’t get the answer wrong.
    “James! Do you see that blue car coming up? It is SO FANCY!”


Read more essays from our Passion for the Climb series, or see how you can submit your own essay, at colgateconnect.org/scenepfc.