I remember the day that my son Yosef was born like it was yesterday. He was a relatively easy delivery, and I was ecstatic that he got to ‘room-in’ with me for the two-day hospital stay (as opposed to his older sister, who spent three days in the NICU, because I spiked a fever during delivery).
He was born with a shock of blond hair, and because he was jaundiced, had a ‘tanned’ complexion. He looked like such a california beach boy! The nurses oohed and ahhed in the nursery, as I proudly pushed him up and down the nursery aisles.
Of course, the occupational therapist in me kept an eye on all of his milestones, even as early as birth. How was his asymmetrical tonic neck reflex? What about the moro reflex? He seemed ok, and I settled into the first few weeks of his life as best as a mother with a 15-month old and a newborn could.
At around 6 weeks old, I noticed, “He isn’t smiling at me.” I tried all my tricks, smiling and baby-talking and swinging, but-no luck. He did smile, but seemed to be looking back and forth, from right to left, not really focusing on anything. “Hmm,” I thought. “Well, he was born at 36 weeks, so I’ll give him another 2 weeks to catch up. I’m sure he will start smiling and looking at me then. He’s just looking all around because he is such a curious baby!”
Well. Two weeks came and went. That back and forth ‘looking’ became more and more apparent. He would not (could not?) fixate on my face or smile at me in return for a smile. The mother’s instinct and therapist’s insticts were now screaming. I made an appointment with my pediatric opthalmologist. (Did I mention that my oldest began wearing glasses at around 13 months for near-sightedness?)
That doctor’s visit will be forever ingrained in my mind. The opthalmologist went through all the tests that he could, but he seemed to make an assessment relatively early on. The first words that came out of his mouth were: “So, you know that he is most likely legally blind, no?”
He went through all the scientific jargon, explaining what congenital nystagmus was, and how that was the root of why he was constantly ‘looking’ back and forth. I remember nodding dumbly next to my mother, who had accompanied me to the visit, as he went on to talk about vision potential, depth perception stumbling blocks, future surgeries, and early intervention services. The same words kept repeating over and over in my mind: “My baby is legally blind.”
Looking back at that appointment, as a therapist, I think it is so important to realize that the parents that we speak to love their children more than themselves, and take any type of mention of disability or even difficulty, as a problem that seems at the worst insurmountable, and at the best a challenge that their child has to face on a daily basis. We want life to be amazing, great, full of positive experiences for our children. The way that we approach children’s level of function is so important.
As a parent, I look at all of the early intervention therapists and services that my son has had over the past four years. He would not be the same confident, quirky, and capable kid that he is now without the support of his vision, physical, occupational, speech therapists, teachers and special instructor. I’ve learned that I cannot be his therapist and his mother. It’s good enough to just be his mom.
Finally, the label of “legally blind” does not account for who he is. We still do not know what Yosef’s exact vision is, since it is still changing. It is hard for him to see? Yes. Yet, Yosef can see the tiny specs of spices in the pizza sauce, and tell me to take them out. He may reach out to touch the railings or to gauge how far apart the steps are in a new playground that he is unfamiliar in, but he climbs and swings up there with the best of them. He uses a slant board to draw, write, and ‘read the pictures’ of a book, and even came home one day, angrily telling me that all of the kids in his class kept trying to use his ‘special slant board’. He uses a stool to build his legos on, so its closer to his line of vision. He can do it all, even if its a little differently. I think that its my job as a mother (and, with my students, as a therapist) is to enable him to acknowledge things that are difficult, value his strengths, know what supports or strategies help him, but most of all, feel confident that he is a great kid regardless.
So whether your child has autism. ADHD, SPD, a mix, something else, or nothing, remember: your child is an amazing kid who hapens to have that difficulty. It does not define them; rather, it helps develop who they are as a person.