A lump forms in my throat and my heart falls as my oldest asks me, “mom, am I always going to have autism?” meet Caiden, my 7 year old. He is the sweetest boy, loves animals, has a contagious belly laugh, is a wiz with numbers, is an amazing brother, he plays hoops better than me, and he also just so happens to have autism.
He is our first born and at 9 pounds 1 ounce and 22.5″ he came into this world calm, huge, and beautiful. And while his demeanor has changed and he’s no longer huge (he’s kind of a peanut), he is still one of the most beautiful souls I know. As a mom I always knew something was different about him, but being our first born I also didn’t know what was “normal” behaviors vs “abnormal” behaviors. He disliked skin to skin contact which made nursing a challenge and had us both in tears more than once, he seemed overly sensitive to water, and the only way we could get him to sleep was patting his bottom gently while hoping he’d fall asleep before our arms did. And once he was asleep it wasn’t long before he was up again, seriously, he was the worst sleeper ever!
He said his first word at 7 months, a very emphatic “oookayyy”, and he cruised right on into using baby signs, crawling or rather rolling, walking, talking in full sentences, eating everything in sight, and hitting all of his milestones.
At just under a year his love for garbage trucks and what he so lovingly referred to as “caca day” was born. Every Friday without fail he would wait for and watch the “caca twucks” from the upstairs window, he loved the repetitive motion of the arm, the predictability of the routine, and eventually he loved our Recology drivers too. He befriended them and knew them by name and he obsessed over garbage, even insisting that he be called Fred (his favorite driver), it was the only toys he wanted and played with, and it was the theme of many birthdays =)
Around the age of two we noticed an increase in repetitive behaviors, and a rigidity in routine, that alongside an inability to cope well with change or any kind of disorder led us to reach out to our pediatrician. We had no idea the road that lay ahead or that it would take us almost 2 years to get him diagnosed. We had no idea that our first trip to the autism clinic totaling over 7 hours would leave us with more questions than answers after being told he was not on the spectrum, we simply “needed to be more strict in our parenting”. And we had no idea that the missed diagnosis would send me into mama bear mode where I would not stop until Caiden had the help he needed and deserved. The help my husband and I so bady longed for.
That unstoppable drive led us to a private doctor and the medical bills that come with, which in turn led us back to our original autism clinic after being told they couldn’t accept an outside diagnosis. We were seemingly back to square one, but this time we had the advantage, we’d been through this before and we asked for the lead clinician, we came armed and ready to fight and after 2 hours, instead of a fight we got an apology. They apologized for missing the diagnosis, and just like that they told us Caiden had autism and he tested severe in multiple categories. In that instant all the fight left me and I cried, I wept with relief, knowing that a diagnosis meant help and hope.
In true Trudell fashion, we went out for ice cream (our cure all) while we attempted to process what had just happened. Here we were with a diagnosis but what exactly did it mean? There is no handbook, they literally hand you a letter saying your child has been diagnosed with Autism and shoo you out the door.
I’d soon find out that a diagnosis was a full time job, it meant even more phone calls, appointments and meetings. The first of which was a school district diagnosis, then a meeting with in home behavioral therapy (ABA), followed by a series of “are we qualified” for appointments and more paperwork.
This road has been long, we fought for a diagnosis, then fought the schools for an IEP that matched his diagnosis, one that would actually serve him, not just make for good numbers. And Caiden has fought too, he’s fought to use words instead of hands, to practice patience, to learn self care, to tie his shoes, to let go of the repetitive behaviors that his brain so badly wants to use to cope, he’s fought to find balance in his body and ride a bike, and he’s fought for so much more. And through it all he’s stayed this beautiful boy, bringing light wherever he goes, snuggling our dogs every chance he gets, and thriving at school.
So when he asks “mom, am I always going to have autism?” I’m still at a loss for how to answer and a million worries about his future run through my brain, but I smile and push down the lump in my throat as I pull him in for a bear hug, and I answer a simple “yes, yes you will, but it doesn’t define you, you’re so much more.” And for now, that seems to be enough…