Fair is Not Always Equal…

Today was difficult. It was another cold (for May) and also quite rainy day, so as a result we were stuck inside after an entire morning glued to our computer screens learning (and teaching) remotely. I could feel the tension build since we hadn’t been able to access the greatly needed break in the routine, where we would sojourn outside into the fresh air, sunshine and freedom from conference calls, Google Meets, Zoom meetings, looming assignments, etc.

The morning was rough as our router went on the blitz, which meant that no one could access the Internet, which also meant that no one could join a Google meet or Zoom meeting, finish working on-line, check email, etc. Essentially our lifeline to our work and school commitments was suddenly and completely shut down. Then, as the wind picked up, we lost electricity. Instantly, my daughter’s anxiety level sky-rocketed as she rattled off all of the assignments that would be missed, not posted,and/or marked late. As a result of the tension, my son Evan began to tic which set my daughter off further, which then made him tic more. At some point, my daughter shushed my son, and my husband shushed her, and I shushed him, which made Evan tic even more.

“It’s not fair, you always take his side,” my daughter moaned.

“No, we don’t, but you are asking him to do something that he isn’t able to do yet,” I reminded her.

“He can do it, he just doesn’t want to. What about all those strategies that Dr. Miller taught him about the competing response? He doesn’t use any of them,” she leveraged. “We wasted all that time schlepping there and back, all for nothing!” she yelled at me, her faces just inches from mine.

“It wasn’t all for nothing, he’s come so far, you have to admit, it’s gotten so much better,” I half yelled, half moaned in exasperation.

And it has gotten better, rather than having a vocal tic every three seconds, the tics are now in response to anxiety. My daughter was right. Every week, we made the four-hour round trip to and from the NYU Langone Children’s Center for therapy sessions. It was a huge sacrifice on her behalf, as she often had to make the trip with us, and a huge impact on all of our lives, especially that of Evan’s. There were times when we just couldn’t push him any further, reminding him to employ another strategy, a competing response to help counter the urge and essentially the neurological pathway that was at the root of his vocal tics. Sometimes, we were too tired and too worn down from the day, or Evan seemed just too overwhelmed from his day. More often than not, we chose to overlook the tics and work to help allay any stress that Evan was feeling.

After storming away from the conversation, Olivia went to her room and fell asleep. I noticed her phone was full of texts and against my better judgement read her text from my older sister Kelly. She’s a doctor in NYC and Olivia will often reach out to her when she upset and doesn’t feel validated by us. As I read the exchange of texts, I felt a pain in the pit of my stomach, I just wanted to cry. If felt so badly for my daughter, it didn’t seem fair that we had one set of expectations for her and yet a completely different one for her special needs brother, Evan. Through my daughter’s eyes, I suddenly ‘saw’ how it seemed. If Evan didn’t follow directions or experienced a problem, immediately he captured both my husband and my attention, and together we would work to soothe any ruffled feathers. Whereas any accomplishment that Olivia achieved or goal she reached was merely an expectation. When her threshold had been met, rather than work to understand her frustration, we quickly quieted her down, worrying how it would impact Evan.

Raising a child with exceptional needs is challenging, with each new stage, there is a new phase that needs more support than a ‘typical’ child. My son has diplegic cerebral palsy, ADHD, a sensory integration disorder, is on the Autism spectrum and also most recently was diagnosed with Tourette’s Syndrome. So much of our time, energy, attention and resources have gone to support Evan and his on-going needs, that I will feel pangs of guilt well up inside of me. I will then overcompensate by buying my daughter things that she didn’t need or ask for just to show her in some way how much I love and appreciated her for being so patient and understanding with us all.

At the end of the day, especially the bad ones, I have to remind myself that we are all doing the very best that we can and for now, and that things aren’t always fair, but somehow we tried to keep them equal.