“Fine” is a relative term. Any parent of a special needs child will tell you that. Fine is a day that is fairly calm, without outbursts, temper tantrums, and sensory drama. A day when my well of patience and emotion is not depleted and I am not on the verge of tears.
I am the parent of a special needs child and there have been many times I’ve been questioned on my parenting decisions, by people who do or don’t know me or my child. The responses have been non-verbal, as in the scoff or incredulous stare, and verbal, something along the lines of, “Is she okay?” And I’ve replied with embarrassment, anger, and a desire to draw into myself and disappear, “She’s fine.”
She was. But I only knew that because I had spent countless dedicated hours, weeks, days, and years with my daughter and her occupational therapist (OT) as we continued to unlock the spectrum disorder that shut my daughter away from us and the rest of the world. The fact was that my daughter needed to throw herself on the hardest surface available, without warning, to receive sensory input for her disconnected vestibular system. The painful input made her “fine.” Until the next time.
Somehow she never bruised from hurling herself onto the pavement. But I did. I felt raw, scraping pain, a festering chasm of worry that didn’t begin to dissipate until Carol came into our lives.
Carol was my daughter’s OT and helped her reintegrate her sensory system over a period of six years. My daughter’s sensory processing system was completely out of sync. She exhibited difficulties with the tactile (touch), vestibular (movement), and proprioceptive (positioning) senses and responded with a combination of hyper- and hyposensitivity. These difficulties affected her speech, hearing and sight as well.
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 normal 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 special needs child, I had special needs too. I needed to look out for and take care of myself.
Tears rolled down my face. Carol had hit a nerve. I thought back to how isolated I had felt at times. Parenting a special needs child consumes you if you let it—and I had. My emotional exhaustion was taking a toll on my health and my relationships with other family members.
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.
What is Sensory Processing Disorder?
Proper sensory integration involves the neurological processing of information that is received by an individual’s body and the environment. The sensory processing disorder (SPD) is a spectrum disorder, meaning that it has a wide range and distribution of symptoms. SPD occurs when the brain cannot modulate the reciprocal process of intake/ organization/output flow of the sensory information that it is receiving and therefore, the body’s activity level.
Taking Care of Yourself
Find other parents who have special needs kids. Develop or join a network of special needs parents you can speak openly with. Ask your child’s occupational therapist or physician for ideas or contacts.
Ask for help and tell your partner and friends how you feel. You are the primary caregiver and parenting a special needs child is emotionally and physically taxing. They probably don’t have any idea how you are feeling.
Cry when you need to. Life can be a roller coaster.
Give yourself personal time in the form of a walk, writing in a journal, or some other activity you enjoy. If nothing else, use the time-out system for yourself when you get overwhelmed.
Judy M. Miller is an adoptive parent educator and freelance journalist. Visit judymmiller.com to learn more.