A year ago, I was lost. My child was throwing epic tantrums. He would furiously rub his feet, one on top of the other, back and forth, back and forth. He would flop onto the floor spontaneously (even concrete!), propel himself onto furniture, and go from zero to ten in a matter of seconds.
But like many parents, I thought he’d grow out of these behaviors. I didn’t see that he was acting strange. I mean, what three-year-old doesn’t throw tantrums or have the energy of a tornado?
With each passing week, I realized that other children my son’s age didn’t do things like throw themselves on the floor which required their mothers or fathers to peel them off and haul them out of building by carrying them under the arm, football style. Not all children had strong aversions to certain sounds. Not all children needed constant tactile input. Something was going on.
My son is incredibly charming and empathetic. These qualities balanced out the troubling “symptoms” of an unnamed problem. I didn’t want anything to be “wrong” with him. But I also knew I wasn’t crazy. Something was up, and as his parent, I had to figure it out. I was (and still am) his advocate, his fighter, his mama bear.
Evaluation after evaluation. Phone call after phone call. Appointment after appointment. My life became centered around my mission: to get an answer for the puzzling behaviors.
Getting a diagnosis was an uphill battle, because Sensory Processing Disorder is not believed by everyone to be a true diagnosis. Some assume it’s part of the autism spectrum, or linked to ADD or ADHD. Some think it’s an “excuse” diagnosis for poorly behaved children (and their incapable parents). Many public schools don't see it as reason alone to offer a child Occupational Therapy, which gives children help managing everyday life tasks. Well-intended, but poorly educated friends and relatives would tell me, "Boys will be boys." But I knew they were wrong. This wasn't a "boy thing."
I’ve found tools to help my son: a weighted backpack, noise-cancelling earphones, a “wiggle cushion” (textured cushion) for his chair, administering joint compressions and skin brushing, and lots and lots of gross motor play opportunities. Every day is different. One day my son is highly “regulated” (a term in the SPD community): polite, kind, controlled. Another day might be really, really rough: fits, constant motion followed by energy crashes, and frustration.
SPD is unpredictable, but the children who have it are certainly special in that they see and experience the world in different ways. Sometimes not-so-good ways, and sometimes beautiful ways. The child who might look right past the blooming daffodil in the grass won’t be the child with SPD to enjoys the vibrant yellow color and feel of the petals against warm skim.
Learning the SPD language and all of its many “tricks” has been challenging, to say the least, but mamas like me do whatever it takes for our children. We fight for better goals on our kids' Individualized Education Programs (IEPs). We ask our churches to start special needs ministries. We accommodate, we educate, we empathize. Every day. We also feel the weight of judgment: the side-eyes and sighs from those around us who think our children are "out of control," not realizing they have a diagnosis.
Last week I was meeting with my son’s speech therapist. We were working together to create a plan for him for the upcoming summer break. I was sharing with her our successes, but also our struggles. She looked into my eyes and said, unexpectedly, “You are a good mom.”
Tears welled up in my eyes. Not because I feel that I deserve anything. Being my son’s mom is my honor, my privilege, and my joy. I think my emotional reaction was one of deep appreciation. Because for a moment, I felt understood and acknowledged and appreciated. I felt accepted. I felt safe.
Mamas parenting children with special needs, whether those needs be minor, moderate, or major, occasionally need to hear that they’re doing a good job. Because so often, we feel like failures. We feel that we don’t measure up. We base our level of “goodness” on our child’s behaviors, on the outcomes of yet another IEP meeting, on the reactions of the public when our child does something “bad” (which really, is just different).
I implore every person who sees the special needs mama to take just a moment, pause, look that mom in the eyes and remind her that she is “good.” She is the incredible, strong, courageous woman who is doing the very best she can for her child. And that is really all that matters.
Related video about a boy with sensory processing disorder:
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