Parents, You Have Special Needs Too!
By Judy Miller
“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 tiptoes on the edge of losing it.
I know this because I am
the parent of a child
with special needs.
Countless times I was judged and questioned about my parenting decisions, by those who know or do not know my child or me. Their responses ranged from non-verbal-the scoff or stare of disbelief-to verbal, something like, “Is she okay?”
And I replied with embarrassment, anger, a need to protect my child, and a desire to draw into myself and disappear, “She’s fine.”
She was fine, but only I knew that. I spent innumerable dedicated hours, days, weeks, and years with my daughter and her occupational therapist (OT) while we unlocked the spectrum disorder that cocooned my girl and 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 lay there screaming and crying at the top of her lungs as she cycled through her process into a calm state. She got up afterwards and acted as if nothing unusual had happened; she flooded during the meltdown and had no memory of what had occurred. Sometimes the cycle lasted 15 minutes, but more often than not it was far longer.
I learned to wait patiently and calmly, and to keep a large buffer of time between errands, commitments, and attending to my other kids. I 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–deep raw pain and a throbbing chasm of apprehension that did not begin to dissipate until Carol came into our lives.
Carol was my daughter’s OT and she helped my daughter reintegrate her sensory system over a period of six years.
My daughter’s 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 as well.my cheeks down and the old-as-time mama-guilt loosened its hold on me.
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
In that moment, I realized my mother love had pushed me to the background. I rarely thought of my needs or myself. I was emotionally spent.ave chosen to take care of my needs.
I thought back to how often I felt isolated. My emotional exhaustion took a toll on my health and on my relationships with other family members and close friends. I had let parenting a child with special needs consume me, and 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.
What You Can Do for Yourself?
Below are 7 Actions and 2 Resources to Have Your Needs Met.
Educate yourself about your child’s special needs.
Knowledge provides understanding. I found that the more I learned about my child’s special needs the more confident I felt about how to help her cope, handle situations, and advocate for her. I was a more effective caregiver.
Consider therapy for yourself.
You need to be as healthy as you can for your child. You can feel a whole range of emotions-anger, fear, and uncertainty among them. Your emotions are normal.
Develop or join a network of parents who have children with special needs. Or ask your child’s occupational therapist or physician for ideas or contacts. Many parents of children with special needs share that they feel isolated.
Stress hormones, found in tears, negatively affect every system and organ in the human body. Crying provides health by eliminating harmful stress hormones. Haven’t you found that you feel relief after a good cry?
Give yourself personal time.
Walk, write in a journal, or participate in an activity you enjoy. Every day.
Take care of you.
Make sure you are eating food that is healthy, drinking plenty of water, exercising, and getting plenty of sleep.
SPD Resources and Support
SPD Foundation, http://spdfoundation.net/about-sensory-processing-disorder.html
The Out-of-Sync Child, Carol Kranowitz (my “bible”)