Since sharing our news, we have received countless lovely messages of support from family, friends, and in a few cases, complete strangers. More often than not, in addition to some kind of “you’ve got this” or “Clara is so lucky to have you as parents,” these messages have been accompanied in some way by one of two things: (1) I’m so sorry to hear this news or (2) How did you know? I want to devote this next post to those two comments, as I feel they’re both worthy of a heartfelt response:
I’m so sorry your family is going through this. Thank you, honestly, for your sympathy. Thank you for thinking of us. Yes, this is a challenging time, and yes, we’re navigating some muddy waters and will continue to do so for years to come. But this news, this blog, the idea of sharing it with all of you, with the whole world in theory, is not our way of looking for or expecting sympathy of any kind. Please don’t feel like you need to be or should be sorry for us. There are far more worse things that can and do happen to families like ours, and honestly we count our blessings every day and night for our imperfectly perfect little girl. So thank you, honestly, but we got this! Parenting is about curveballs. When shit hits the fan, you can choose to take the high road or the low road. Us? We’re going high, and we always will.
How did you know? This one is a little easier for me to respond to. The short version? I trusted my gut. And that is one of the biggest reasons I started writing with the ultimate purpose of sharing it with all of you. If you are a parent, or you ever plan to become one, that is and always will be my biggest piece of advice for you. Trust. Your. Gut. And then read this post over and over again. There are NO common, catch-all red flags or warning signs, as you will soon learn.
You know your kid better than anyone, just like I know mine. It was spring of 2018, not much more than a year ago, that I started having questions about the amount of language Clara was producing. Questions, but not quite yet concerns. I would soon learn that the questions would develop into concerns, primarily about her expressive language. I talked briefly with her pediatrician (who, for the record, we absolutely love) and he said it wasn’t much to worry about. I then mentioned it to my cousin who just happens to also be a pediatrician, and she informed me that any parent can recommend his or her child for Early Intervention (EI) services. She texted me the link and away we went! In June, we had a team of developmental specialists come to evaluate Clara in our home. Though I thought she performed beautifully, I wasn’t surprised when she was found eligible for services based on both expressive and receptive communication. The three of us traveled to Europe for the vacation of a lifetime in July, and by August, she was set up for one hour of speech each week. Not long into the process, maybe a month at most, our EI Consultant suggested we add another hour with a Speech Language Pathologist. I never hesitated; after all, everything was covered by insurance and the MA state Department of Health, so why not! The more services, the merrier! A month or so later, we received the request to meet about Clara’s progress. We’ve noticed some red flags. Really? Like what? Is she not talking as quickly as you had hoped? No… it’s more than that. Like a lack of eye contact when playing. She walks on her tiptoes a lot. She doesn’t seem interested in engaging others in play. Yes, sure. I suppose I saw that. I do not suppose I saw how walking on her toes has anything to do with this. What exactly is it that you’re saying? We’re concerned about a possible Autism Spectrum Diagnosis. [Insert me being flabbergasted here.] I went into Mama Bear mode. You know the one. The mode where you don’t eat, don’t sleep, don’t focus on anything until your questions are answered, or in my case, until your kid is on all the waiting lists. And for the record, at her next wellness check, our pediatrician ensured me that he had no concerns. That the little girl he was looking at definitely did not have ASD. Ah, a breath of fresh air. Still, better to do everything we can though, right? Clara started attending social groups though EI, bringing her total number of services to four hours each week, and that is where she currently stands today. And then we waited. Waitlists are a funny thing, because while we waited on our lists, we watched something beautiful happen: Progress. So. Much. Progress. Words came more easily to her. She signed, and then she didn’t need to sign anymore. She told us what she wanted, what she needed, and what she liked. Just before her evaluation, I counted her words and phrases. Well over one hundred words. For someone with a six-month goal of twenty words, I would say that little one knocked it out of the damn park. I admit, we even considered cancelling the evaluation. And yet, as our appointment approached, we decided to keep it… a second opinion from BCH couldn’t hurt! And it ultimately turns out that knocking it out of the park in one area doesn’t take other areas of concern out of the equation. So when you wonder why my first post described the news as surprising yet not entirely shocking, now you know. Now you know that Autism can and does look different for every child long before the diagnosis happens. There are signs parents may pick up on, and there are those (like walking on her tiptoes) that parents will ignore, or at least chalk up to their kid being a silly yet blissfully unalarming weirdo. I trusted my gut, I got her what she needed, and I pledge to do that for the rest of my life.
