Any Concerns?
“Do you have any concerns? Do you have any questions?”
I know we’re nearing the end of June’s therapy sessions when her OT, PT, or speech pathologist looks at me and poses one or both of these questions. Last week I looked back at Katherine, June’s Occupational Therapist, and laughed, “Yes, lots!” She laughed with me and rephrased, “do you have any concerns or questions that we can address right now?”
I smiled, “nope, all good.”
June started therapy when she was between 3-4 months old, in the summer of 2019. Every year on June’s therapy anniversary we have an “annual review” with each of her therapists and a case manager from Early Intervention. Early Intervention is a state supported program that makes in-home therapeutic services accessible to children 3 and under. At the time of June’s enrollment, and now during her yearly reviews, we set goals for her development and review her progress on previous goals. Goals are set by looking at the developmental milestones of a “typically developing” child and adjusting them to meet June where she is and where she can go, both to strive for progress but also make her and those supporting her feel successful. Systematically, annual reviews are completed to ensure that June qualifies for services, in other words they make sure that June is developmentally delayed enough to receive Early Intervention. Since June has a diagnosis of Down syndrome, she will always qualify for services, much like since Holt has a diagnosis of Dandy Walker Malformation, he always qualified too.
The automatic qualification status of both my children is a blessing and a curse. On one hand, I am thankful that I don’t have to advocate for my child to have services. There are layers of advocacy involved when your child needs additional supports to navigate the world as it is set up. Removing the layer of fighting for their right to one of those many supports in the first place can be a gift. On the other hand, reviewing how your child does, and in a lot of cases, how your child doesn’t measure up to the “standard” can be a heart wrenching process. Heart wrenching to me, a person who has been “typically” developing in our culture for 35 years, a culture that has set standards and definitions of what is beautiful and intelligent and puts those that meet or exceed those standards on a pedestal.
Being a mom has meant being a voice, an advocate, and a guide. As Holt gets older my role in guiding him has already started to shift from a guide that walks in front, to one that walks beside, and sometimes even behind him with watchful eyes and perked ears. I suspect that my role will shift in a similar, yet unique, way as June gets older. Guiding my children has already proven to be one of the most challenging and rewarding experiences of my life. Being their mom has catapulted me into a never-ending unveiling where I see the world through a brand new lens. This new lens always appears to be a little clearer, a little less rose colored than the one I was looking through before. It’s a lens that can call in a wave of grief – anger, denial, acceptance, gratitude, and back around again.
Knowing or being told that my child doesn’t meet a standard or a goal presses and squeezes me. It’s like I’m standing in an empty room that is full of things that define the world as I formerly knew it. Each time Holt or June’s way of being doesn’t measure up to the “typical” standards that my life and our society have previously set, the walls close in. In that moment, I am left with choices. I can choose to get buried by the things, the thoughts, and the belief system that previously existed, I can choose to toss them out, or I can choose to let the pressure of the squeeze forge a new path for me, for us, for Holt and June. The letting go and the newness can be scary, but I also know that there is an unseen, immeasurable level of grit that is born from a mother’s love that makes the most frightening of paths walk able.
For much of the last year, June has been fairly isolated from friends her own age due to COVID-19 and her less than five star track record with fighting respiratory illnesses. As the world has begun to open back up and June has gotten older, stronger, and bigger, we’ve gotten to introduce her to more opportunities to be around kids her own age and she even started going to summer camp. A few weeks ago I had the chance to witness June interacting with a large group of kids around her age, as well as their parents. I watched as June stomped around greeting the kids and adults she had never met before, smiling, and waving her arms, requesting to be picked up. I listened as her two year old peers used words to speak to one another or their parents and I noticed the differences with how June communicated. June showed up with her whole self, literally using her whole body to communicate her joy and excitement to be in that moment, but she did not use words.
I straddled a line in processing what I heard and what I saw in that moment. On one side of the line was the developmental milestone, the “typical” that had been shared with me in her recent review, stating that most kids her age are putting together two word sentences, with 50 or so words total in their vocabulary. On the other side of the line was witnessing June’s body language and facial expressions that represented her full embodiment in communicating joy and welcoming. It wasn’t the standard milestone that was listed on the developmental handout at the pediatrician. It wasn’t the baseline used for goal setting in speech therapy. On one side of the line I felt the squeeze and on the other side of the line I saw a new path and the opportunity for a new lens.
As we walked to the car, I asked myself, “are you concerned?” and then I looked a June and thought, nope, all good.
