Our “fishy” lives in the middle of our living room, and I try my best not to trip over it when I walk by. It is a lime green chair sitting low to the ground and tilted at an angle. The flat surface is shaped like a fish with a perfectly circular eyeball, gill marks like sand ripples on a beach, fins, and a tail, all slightly curved upward to serve as handles.
When my 4-year-old daughter sits on it, she spins around and around, the tilt providing perpetual momentum that thrills her. She throws her head back and giggles, her hands grasping the fins and her crossed legs resting in the middle. Her body, which is forever craving sensory input, is satisfied for the few short minutes that she spins on her fishy.
I wish I could say the fishy solves all her sensory challenges, but it does not. With each passing year, we are learning what sort of things are harder for her than other kids. The list includes balance and coordination, focus and concentration, gross motor skills due to low muscle tone, and a host of other things. Recently, I have been mourning the loss of my expectations that things would improve with time, but instead they have worsened. Her tantrums have intensified, and the fear in her eyes saddens me to know how miserable she must feel. She is almost a year behind in some developmental areas.
I have not always known she was struggling.
At the age of one, my daughter was pulling her hair out to the extent that she was balding in places. Her thick, beautiful curls disappeared, and gaping patches of skin appeared. Trichotillomania is the medical term, but we knew it as “baby trich.” This was one of the first signs there was something going on with her beneath the surface. I cried at her bald patches, and quickly ordered cute knotted hats from Etsy in the meantime, while the hair grew back. I didn’t know it would be something we would struggle with for years, and the reason why we have to keep cutting her hair to keep it short.
What do we do when someone we love deeply is struggling with challenges out of our control?
When ADHD symptoms arise and your child can’t maintain focus like other kids their age?
When you have to leave a group setting because your child is overstimulated, overwhelmed, and covers their ears because they can’t handle the noise?
When you go to a different doctor every month, bouncing from pediatricians to specialists to optometrists and gastroenterologists, dentists, and occupational therapists?
When the professional tells you your daughter’s eyes are wrong within the first five minutes of meeting her, sometimes, before even saying a simple, kind hello?
When separation anxiety takes over their body, and your child screams at the thought of you walking away, even just for a little while? Their little face breaks your heart because it’s as if they believe you would dare leave them forever when you know that will never be the truth.
Our family is finally accepting the reality of a beautiful child with physical and sensory challenges. My heart is leaning toward what God would have us do as a family to be inclusive instead of mourning her “labels” and wishing for a healthier child in mind and body.
But she’s perfect. I want to live with that mindset instead of seeing her limitations first.
My husband sat down on the bed next to me one morning after an incredibly difficult night with our daughter. She had been throwing tantrums and puzzling us endlessly, and I was at the end of my rope. I could not figure out how to parent her, and I was worn out from trying.
“She is our little image-bearer. I am willing to do whatever it takes to get her what she needs to feel safe in this world.”
The night before, I had prayed for the Lord to send HELP or else. I was broken in half with no hope of what to do.
And the Lord answered my prayer by swelling my husband’s heart. Instead of being hardened to her needs and limitations, he was softened to her cries for help. As the leader of our family, he was showing us the kind of love he expected us to have for our daughter with special needs.
That was what I needed to shift my mindset from “I can’t do this,” to “I will love her and help her through her struggles no matter what it costs.”
She spins on the fishy. She crawls under a table with a blanket to escape from the world. We lie with her in bed at night so she can fall asleep in peace and feel safe. I cut her hair to keep it short instead of nagging her for pulling it. We often ask her if she needs a snack and try to keep her hydrated. We try deep pressure on her little legs and arms. We give her extra attention and let her sit on our laps. When she is tantruming, we try our best to set aside our frustration (which is SO HARD), and help her communicate what she really needs. The occupational therapists have taught us so much, and it’s their kindness and compassion that have helped my husband and me see her struggles through a different lens.
Her struggles may be bigger than I can understand. But I won’t stop trying.
by Her View From Home 
by Becky Ferrigno 
by Brynn Burger 
by Deidra Darst 
