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SPECIAL NEEDS MAMA
WRITER, PROFESSOR, ADVOCATE AND PEDIATRIC EPILEPSY PROJECT (PEP) CO-FOUNDER
VICKI FORMAN SHARES WHY HER SON LOVES TO SWING
It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm
swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his
smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he?
I mean, kids just love to swing, don't they?"
Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the
swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal. Swinging gives my son
the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.
And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."
My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two—variations on "muh muh"—which he uses indiscriminately for "more" or "mama" or "open."
And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.
I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us different. And the same.
For those mothers at the swings who want to know, here are a few simple definitions of some of the more common disabilities children can face. Bear in mind that this list is not meant to be exhaustive in any way. If you or a friend has been given a diagnosis, the important thing is to educate yourself as much as possible: ask questions; do your research and most of all, listen.
Autism: A child with autism is typically referred to as being diagnosed with “autism spectrum disorder” or ASD. As a spectrum disorder, the child’s diagnosis can vary from severe to moderate to mild. Children with autism (please don’t call them autistics!) can experience difficulties in social interactions and may have unusual responses to sensory experiences. There is no definitive known cause or cure for autism.
Blindness, or vision impairment: Children who are born blind or become blind use various adaptive techniques such as a can for walking or Braille for reading. Many are also taught adaptive life skills and as adults may acquire a guide dog.
Cerebral palsy, or CP: A diagnosis of cerebral palsy indicates that there is damage to parts of the child’s brain that affect movement, speech and coordination. As with autism, there is no definitive cause or cure for CP, which can be either severe (in which case a child might not walk or speak) to moderate to mild.
Deafness: Children who are deaf or hearing impaired are often taught sign language in order to communicate. Some children may use hearing aids; others can also receive cochlear implants, an electronic device that presents a sense of sound to a person who is profoundly deaf or hard of hearing. Even with implants and hearing aids, however, children who are deaf or hard of hearing still may not acquire speech.
Developmental delay or developmental disability: A catch-all term to refer to children with mild, moderate or severe mental retardation. These delays can be part of or apart from a separate diagnosis (including Down syndrome, cerebral palsy or other disabilities). Because of early intervention and/or special education, children with developmental delays can catch up; if they do not, they are considered to be adults with developmental disabilities.
Down syndrome (DS or trisomy 21): Down syndrome is a chromosomal abnormality characterized by the presence of all or part of an extra 21st chromosome. Children with Down syndrome may have speech, movement or feeding issues due to the way the extra chromosome effects muscle tone. Some children with DS also have heart defects and require surgery.
Learning disability (or LD): School-age children who receive a diagnosis of LD can include those who are dyslexic, have auditory processing disorders, ADD or ADHD. Typically children who are LD will receive support services in school, which may include special education.
Resources:
Cure Autism Now
National Federation for the Blind
United Cerebral Palsy
House Ear Institute
Developmental Delay Resources
National Down Syndrome Society
National Center for Learning Disabilities
Vicki Forman writes a monthly column at Literary Mama. She lives in Southern California with her husband and two children, one of whom is multiply- disabled. You can contact her at vlforman@gmail.com.
Click here to read more about Vicki's life as a special needs mama in her blog, “Speak Softly...and Carry the Proverbial Baton Grand.”
Click here to check out THE FAMILY GROOVE's article on PEP.
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