one family's neurodiverse journey
Abrian has ALWAYS been fascinated by letters and has an incredible memory. He has favorite letters—he flip-flops between “w” and “y”—and his favorite toy is a bag of magnetic letters. We even threw him an alphabet-themed 2nd birthday party last year with books as favors, but really didn’t think much of this particular interest at the time.
Read MoreSuddenly the boy who talks too loud, or too closely, or too off-topic—he’s considered strange instead of interesting. The little girl with messy hair and mismatched clothes starts to get eye rolls instead of smiles when she approaches her classmates. I wish we could bottle up the general sentiment of acceptance that is so pervasive in preschool and kindergarten to help get us through the rest of school, once the judgment kicks in.
Read MoreAs a result of these meltdowns, we often opted out of going anywhere, instead choosing to let people come to our house. I particularly remember one outing we decided to partake in though—a group trip to San Francisco’s Exploratorium. Julian had just turned four and Elias (our second-born) was still a little guy, unlikely to find much interest in the museum. I debated whether or not I’d bring Julian solo (and have Shaun stay home with the baby) up until the last minute, but I did eventually decide to go that route. I’m going to share the details of this story in hopes that some of you reading may either relate to it or be able to draw some knowledge from it—perhaps you’ll find yourself even a fraction more understanding the next time you see a child “misbehaving” in public.
Read MoreOnce more, as prepared as I was for this outcome, it was still a bit of a gut-punch to hear those words again and with a different child—“your son has autism”. Let me be VERY clear here, as I know there has been a lot of backlash received by parents for describing the “grief” they felt upon their child receiving an autism diagnosis—I’m not in any way implying my son having autism makes him “less-than” or imperfect. In fact, I believe the exact opposite is true. I do think it’s important, however, to allow parents and guardians some space to accept that the life they may have prematurely carved out in their minds for their child (as parents do!) will be different, and often times much more challenging.
Read MoreAs a parent, I’ve second-guessed so many, if not all, of the decisions I’ve made when it comes to my kids (which I know isn’t exclusive to special needs parents). We are living in an age of mass and constant information. With the invention of the internet we are so much more susceptible to hearing (reading) everyone else’s every thought (ummm, hello—here’s my blog, read on for my opinion!)
Read MoreI’ve shared this story a few times now—the story of where our journey with autism began. I’ve re-written it several ways across different platforms on social media. I don’t know that I have it in me to write yet another variation of the same tale the same ol’ way, so I thought I’d try something different. These “letters to: ____” are not uncommon in internet-land (and are arguably a touch cheesy), but I started writing one as a writing exercise and I thought I’d share.
A Letter To Myself Before My Son’s Autism Diagnosis:
Dear Marie-Danielle,
You look at your son and your heart beats faster. When he was a baby, I know you struggled—struggled with the life-changing adjustment from zero kids to one, struggled with the loud, inexplicable, and often constant crying, struggled in silence with what was likely undiagnosed postpartum depression—but you arose from the ashes of what your life once was and found the most incredible love you could have imagined.
As he grows, I see that war being waged between your brain and your heart. I see the search history: “24 month milestones”, “red flags autism, “hand flapping normal.” You don’t know it yet, but that feeling in the pit of your stomach, it’s there because you’re right. It’s scary now, and the thought of exploring it is even more frightening, but boy will you come to embrace it and you will run with it and eventually even fly. I saw your earnest attempts at addressing your concerns. Your doctor said what you wanted to hear, which was also what you so truly wanted to believe. It’s okay that you accepted it despite the little voice telling you he was wrong. You weren’t yet ready to hear more. Later, that same pediatrician will apologize to you for “dropping the ball”; he will learn, and he will be more vigilant in the future.
Your child is getting bigger now and I see the concern creeping back in: he still doesn’t talk much, at least not words or sentences that aren’t quotes from a movie, song, or book. He is having lots of trouble potty training and refuses to do more than urinate at all. I see your tears as you beg and plead with him to go the bathroom after 10 days of withholding. But I’m going to let you in on a secret, one day he will speak—he will say things that will make you laugh, others that will make you proud, and a few unfiltered ones that will make you cringe. One day, he’s going to make a habit of talking to every single person he passes on the street and he’ll bring smiles to each and every one of their faces. Talking will become his superpower. And, in one of your most proud parenting wins, he will begin to regularly use toilets and will not start kindergarten in diapers (not that there’s anything wrong with that).
I know you’re still nervous. He’s in school now and his preschool teacher is concerned about his lack of socializing, difficulty with transitions, his “low muscle tone” and his fine motor skills (or lack thereof). She calls in for reinforcements through a local agency and has you fill out some paperwork. I see you crying on the walk back home from that meeting when you finally come to terms with it: you were right all along.
The process didn’t stop there though, and I watch the trial-and-error as you attempt to figure out who does what in the medical and educational worlds. I see you anxiously waiting for months on end for inquiries to turn into referrals, for referrals to turn into authorizations, and authorizations to turn into appointments. It feels lonesome and confusing now, but I promise you you’re paving the way. The experience you’re gaining will help you down this road again (and again), and you’ll help lead others too!
I want you to know that it’s not your fault you didn’t get help sooner—you did try, and honestly, the help you do get him and when you get it—it is sending you down a path that will set that little guy (and his two little brothers to come) up for so much success. You will meet incredible therapists, educators, liaisons, specialists, and parents who will make your journey joyous and full. You’ll find your family’s community and you’ll watch your son do things you weren’t sure he’d ever do: make friends, learn to read, and THRIVE in a general education classroom. The little boy once completely paralyzed by others crying will begin proactively asking what is wrong and learn to embrace those big emotions. I know it’s hard to see it now, but your child—the same one currently struggling to hold a pencil, throw a ball, or open a door—he’ll learn to write, climb rock walls and even possess the dexterity and coordination to play the piano. He’ll still prefer being alone, but you’ll come to know that’s his choice, not his deficit.
When the time comes, and it is coming soon, and you get that official diagnosis “F84.0” aka “Autistic Disorder”…I want you to smile and sigh with relief. You championed with your incredible son through a confusing system and this diagnosis, it’s just a number—a code—not a life sentence. I want you to look at it as a magical key that is going to open the door to a room full of people who will genuinely care about your son and celebrate his progress with you every step of the way. You may not believe me now, but YOU’VE GOT THIS—HE has got this…we’ve got this.
- Sincerely,
You :)
