Fine” is a relative term. Any parent of a child with specials needs will tell you that.
“Fine” is a day that is fairly calm, without outbursts, temper tantrums, and sensory drama.
“Fine” is when a parent’s well of patience and emotion are not depleted within hours of waking, a day when she is not on the verge of tears, has no more to cry, or is not on the edge of losing it.
I know this, because I am the parent of a child with special needs.
There have been many times I’ve been questioned about my parenting decisions — by those who know or don’t know my child or me. The questions have ranged from non-verbal (the scoff or stare of disbelief) to verbal, something like, “Is she OK?”
And I’ve replied with embarrassment, anger, a need to protect my child, and a desire to draw into myself and disappear by a simple, “She’s fine.”
She was. But only I knew that. I’d spent countless dedicated hours, days, weeks, and years with my daughter and her occupational therapist while we unlocked the spectrum disorder that cocooned my girl, the disorder that shut her away from herself, her family, the rest of the world, and me.
It used to be that my daughter regularly threw herself on the hardest surface available without warning in order to receive sensory input for her disconnected vestibular system. She would lie there screaming and crying at the top of her lungs as she cycled through her process into a calm state, and then get up as if nothing unusual had happened; she was flooded and had no memory of what had occurred. Sometimes the cycle lasted 15 minutes, but more often than not, it was far longer.
I had learned to wait patiently and calmly and to keep a large buffer of time between errands, commitments, and attending to my other kids. I’d learned that there was nothing I could do to reach my daughter until she came out on the other end.
The painful input made my daughter “fine,” until the next time. Somehow she never bruised from hurling herself onto the pavement. But I did, again and again. I felt raw, deep pain and a throbbing chasm of apprehension that didn’t begin to dissipate until Carol came into our lives.
Carol was my daughter’s occupational therapist, and she helped my daughter reintegrate her sensory system over a period of six years. Her sensory-processing system was completely out of sync, exhibiting difficulties with the tactile (touch), vestibular (movement), and proprioceptive (positioning) senses, and responding with a combination of hyper- and hyposensitivity. These sensory difficulties affected her speech, hearing, and sight.
In her infinite wisdom, Carol sat me down one day and gave me a stern talking-to. She pointed out that as my daughter’s system became healthier, she became manipulative. And although that was a good sign — a milestone — it was time for me to expect more, to stop enabling my daughter’s behavior.
Carol went on to say that as the parent of a child with special needs, I had special needs, too. I needed to look out for and take care of myself. The veneer of my “brave face” cracked with that simple statement. Choking tears coursed down my cheeks and the old-as-time woman-guilt began to loosen its hold on me.
In that moment, I realized my mother’s love had pushed me to the background. I rarely thought of my needs or myself. I was emotionally spent.
I thought back to how isolated I had felt countless times. My emotional exhaustion was taking a toll on my health and my relationships with other family members. I had let parenting a child with special needs consume me. It had been easy, because I had so much love invested in her.
Today, I hold Carol’s sage advice within the invisible pocket of my heart, and take heed when I need to. I search for compassion, not pity, understanding, and support, in the form of comfort and a listening ear. And my daughter? She has become even healthier, because I have chosen to take care of my needs.
Judy M. Miller works with pre- and adoptive parents, equipping them with new techniques and information, as well as encouraging and empowering adoptive families through difficult times. She is the author of the international-selling “What To Expect From Your Adopted Tween.”
