Note from Rachel: Here is a glimpse of what it’s like to parent a child with CVI. It’s hard. Everything is hard. And that takes a toll. Henry is a joyful and spunky almost second grader. Before we learned of his CVI, his providers thought he had severe ADHD and other behavioral issues. If you don’t know CVI, you don’t know why Henry does what he does. You might miss all the brilliant ways he compensates for his lack of visual access. You might miss the profound effect visual and sensory complexity has on his ability to process and exist in his world.
Last weekend, I took the kids to CVS. Seems simple, right? Nothing is simple raising a kid with CVI and other needs. Ever. We’ve gone to this CVS before, so it’s somewhat familiar. I just wanted to get toothbrushes for the kids.
I thought a quick outing would help break up the monotony of hanging out at home on a Saturday morning. It’s helpful to keep Henry moving through a schedule. He needs to know everything that’s coming up at least five steps ahead. Without visual access, it’s hard to be anchored by visual anticipatory cues.
For many reasons I see now that Henry was not his regulated self. His dad was away for the day. He just completed a full week of school (cumulative fatigue). He had a rough night of sleep. I should have known that he wouldn’t be able to handle the visual and sensory complexity of CVS. (As a CVI mom, I live my life telling myself “I should have known, I should have known!”)
We walk in, pick up two toothbrushes, and I then see Henry bolt down the aisle. It’s only been a minute. Complexity is everything when it comes to CVI. I get him back to me and I see it in his whole being: He’s in full meltdown mode. I stabilize him on the floor as he kicks off the entire bottom shelf of Burt’s Bees products. I have no idea how to get us out of the store without him destroying everything. (Gosh he’s getting strong.)
And that’s when I’m triggered. That’s when I feel paralyzed by all of it. That’s when the cumulative stress, pain and trauma of raising a child with special needs blew up in my face. I let out a primal scream: “SOMEBODY HELP ME!” I was so shocked and mortified this came out of me. You’d think these meltdowns would get easier, but they don’t. Because with every one, the hundred that came before it comes rushing in.
I looked up and saw a CVS staff member gently holding Henry’s legs and telling me that it’s okay and she’s here to help. She kept focusing on me, she kept telling me to breathe. In that moment she saw how important my mental health was. She took Henry to look at toy cars. Of course, he immediately snapped to it and calmed down. (He does better with anyone but me.) I turned around and another woman was there behind me. A fellow mom was giving me words of empathy and solidarity. Another CVS staff member was with my daughter. Three amazing women were there in an instant.
I kept apologizing because, for whatever reason, that’s what I do when I feel embarrassed and vulnerable. And I felt so vulnerable. So raw. So broken.
I got up and felt my legs and limbs again. I found Henry playing with cars with Ida, the CVS staff member who got both me and Henry to find calm. Ida is incredible. Her patience and care was so beautiful to behold. And she kept reassuring me that we all need help. That’s why we all have to be there for each other. She paid for a toy car, so Henry could take it home. I objected and she firmly said, “No, you need to get him out of this store and into the car. And if this helps, then it’s my pleasure.”
We got to the car. Henry started going into meltdown mode again as I buckled him in (this involved pulling my hair, pinching my arm, and scratching me). I power through it and get him secured. As I start the car, I cry and shake and wonder if I can ever put myself back together.
And I know this doesn’t define me, but raising a kid with a different normal has changed me and sometimes to the point where I don’t recognize myself.
But I also know that I need to be okay with asking for help, with receiving, with seeing vulnerability as part of the growth process.
I wrote a thank you note to Ida and called corporate CVS to register my praise for Ida. When I arrived at CVS a few days later to give Ida the thank you note and gift, I found her helping an older man find the right toothbrush. She was with him for 10 minutes listening patiently and asking questions. This is just who Ida is: an incredible human.
To all those that have helped me along this difficult path, thank you. And to all those parents of children with a different normal, I am with you during all the scary and painful moments, days, weeks and years. We are not broken. We are working through it.
It’s messy out there.
Rachel Bennett is an M.Ed and the Content/Community Moderator of CVINow.org. She is the parent to Henry, her 8-year-old son with CVI. Henry loves all household appliances—washer, dryer, instant pot, microwave, oven, dishwasher. He is a huge helper at home with all the chores! Henry loves to walk to the local bakery, go swimming, ride buses and trains (pre-pandemic), play at the splash park and playground, ride the cart at the grocery store, FaceTime with his friends and family, dance, and give big hugs. He’s a love.
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