It’s been another amazing month in the Paul household. Noah continues to thrive in part-time special education preschool and continues to make gains in speech, occupational, and feeding therapy. While he sometimes gets frustrated that he cannot always quickly communicate his wants and needs to us, he is the sweetest, happiest, most good-natured child I have ever known.
One thing I’ve found myself reflecting on lately is how I cannot allow my own fears of the “what-ifs” of Noah’s diagnoses get in the way of us allowing him to have the kind of life experiences that neurotypical children do.
So many times over the past year or so, I’ve found myself thinking things like “What if he finds (an experience he has the opportunity to participate in) too noisy/bright/crowded? What if he experiences a sensory overload? What if… what if… what if…?” and wondering if we should pass on the opportunity. This is what I’ve finally come to realize: It’s okay if something is a little (or a lot) overwhelming for him, if we need to step into a quiet space at a birthday party and do “brushies and squishies” (brushing his skin with a special brush, then doing gentle joint compressions; it’s called the Wilbarger Protocol, and Noah responds extremely favorably to it), or if he stims (his preferred way to stim is by humming) due to excitement/nervousness/some other emotion.
There have been so many times when I’ve paused before accepting a birthday invitation, purchasing tickets to an event, or allowing him to participate in some activity or experience, and every single time I’ve moved past the what-ifs and said yes, great things have happened.
He didn’t find the noise of the Harlem Wizards game overwhelming. In fact, he was absolutely riveted by the extremely-loud drum corps that performed during half-time. He did find the noise of a birthday party overwhelming, but we worked past it and he had a wonderful time painting and eating snacks and a cupcake. He adores going to his weekly Zumbini class with Mommy and Daddy. There’s a lot of noise and movement, but he gets to play instruments and dance and play with scarves, all of which he loves (and when he gets a little overwhelmed, we’re right there to hold his hand or pick him up and hug him tight). He wasn’t scared of the pony ride at Christmas; in fact, he absolutely loved it.
And yes, we sometimes have to cut a trip a little short because it’s more than he can handle, but that’s okay. What’s not okay is for us to set limits on what he does based solely on our fears about his possible responses. He deserves a life that is rich with experiences, not one limited by what-ifs. In the words of Erin Hanson: “There is freedom for you, On the breezes of the sky, And you ask ‘What if I fall?’ Oh my darling, What if you fly?”