The poem "Welcome to Holland" by Emily Pearl Kingsley is one that most parents of a child with a disability hear sooner or later. Kingsley likens finding out that a child has a disability to taking a long-awaited trip to Italy, only to discover you have ended up in Holland and cannot leave. At first there is anger at the change, disappointment and disbelief, but gradually, says Kingsley, if one is open to possibilities, you learn that Holland is a beautiful place on its own merits.
According to Charlotte-Mecklenburg Schools (CMS), 15,000 children in Mecklenburg County have some kind of physical, cognitive or behavioral condition that qualifies them for special needs services through the school district. Ruby Navarro, communications director for the Allegro Foundation in Charlotte, points out that the number does not include children with chronic diseases — such as cancer or cystic fibrosis — nor does it include people who have just moved to Charlotte or who do not, for whatever reason, have their child diagnosed.
What does it take to parent a child with a disability — a physical or mental condition that, by definition, can be treated but cannot be cured? How do parents of newly diagnosed children find resources and support? What transforms ordinary people into experts on their child's condition and often, into advocates? And how can parents — and the community at-large — learn to see first the child, then the ability, and finally, the disability?
Tony Sizemore made the transition from father-to-be to parent of a child with a disability when his daughter Mackenzie was born in 2003. "We went from the most joyous time in our lives . . . to the most horrible time I've ever experienced in four words: 'We have a problem.'," says Sizemore. Initially, he credited his military experience and his pragmatic farm upbringing with helping him cope. "It is what it is, and there's nothing we can do about," became his motto in the early days. Mackenzie has Marshall syndrome, which can profoundly impact vision, hearing and joint function. She has severe myopia, with 20/1000 eyesight (20/70 is legally blind). She cannot swallow or breathe without a tube, although she will eventually become independent. Mackenzie lost her left eye to glaucoma at 8 months of age.
"Kathy and I just leaned on each other," says Sizemore about the first year. "The days she would cry, I'd hold her up. The days I would cry, she'd hold me up." Sizemore says he finally realized at Mackenzie's first birthday that although her condition was not curable, they would make it. "My wife and I put an arm around each other and said, 'We're going to get through this'," he recounts. "If no one's gonna give up, then we're gonna be OK — and OK is what OK is," says Sizemore.
Mackenzie is cognitively above her physical age. "She is unbelievably intelligent, unbelievably unique, unbelievably stubborn," says Sizemore with pride. In only two and a half years, he has gained expertise through research, tracking down doctors and talking with geneticists. "I thought at 36 I was very emotionally stable and developed — little did I know," he says of the journey. "I didn't have any choice. I had to take care of Mackenzie."
Now, Sizemore is a panel speaker and is often tapped to visit parents who are just discovering their child's disability. "This is me healing me," he says of the advocacy, which helps him focus on positives as much as it helps the parents struggling with their new situation. He credits his progress to the underground network of parents helping parents, as well as organizations like Family Support Network, which helps parents of children with disabilities connect with each other. It's what Sizemore calls "the Fraternity." "Every family with a child like this is a member of this fraternity," says Sizemore. "It's a huge thing, but nobody knows about it — until you're asked to join."
"People come to us at all different stages — usually when they find out about us," says Laura Curtis, the education and outreach coordinator at Family Support Network of North Carolina. Family Support Network helps families with special needs children from birth to age 21 with support services. They reach statewide through affiliated programs in every county that provide direct services to families. One of the core services is the Parent-to-Parent network, training "support parents" to help other families cope with the stress and challenges of parenting a child with a disability.
Allison Crotty's daughter Samantha, age 14, has autism. She started having seizures when she was less than 6 months old and has significant developmental delays. "It was quite a journey," says Crotty. "I think that the grief process is lifelong. The worst of it is at diagnosis."
Crotty says that although she initially turned inward in her grief, she became empowered learning more about Samantha's condition and needing to fight for resources for her daughter. Meeting other parents was a turning point. "That was the biggest part of my healing, adjusting," says Crotty. Talking with other parents — even if their children had different disabilities — helped her realize that she was not alone. Eventually, Crotty started a support group, which she says was "another huge part of my healing."
Part of the adjustment lies in realizing that some things cannot be changed. "I think the biggest shift was the discovery that the medical field couldn't fix it or couldn't really explain it," she says. Now, she has learned how to research her daughter's needs. "I'm not at the mercy of experts," she says. "I know her better than anyone."
Samantha attends Metro School, which offers specialized resources for children with disabilities who cannot be part of inclusion programs in regular CMS elementary schools. "She's doing great. We have been blessed with that school and wonderful teachers," says Crotty, noting that the teachers emphasize Samantha's abilities and strengths while helping her work around her disabilities.
Pam Bennett's daughter Megan was diagnosed with bipolar disorder at age 7. Bennett knew there were problems long before that, but went from resource to resource until a correct diagnosis was made. At first, the grief over the diagnosis outweighed the relief of finally understanding the cause. "It's almost like a mourning process you go through as a parent," says Bennett. "You want to be in denial." Bennett says she cried for days. She praises the Wraparound program at Alexander Youth Network for helping them when Megan's needs were too intense for Pam and her husband to meet alone. Alexander Youth Network created a multidisciplinary resource team to address Megan's needs, and provided in-home help.
Megan attends a regular CMS elementary school, but needs extra help in the evening when she is tired and her coping methods begin to fray. Bennett hopes to go back to school and earn a degree in Special Education. "I'm going to try to help some of the other parents and advocate for these kids," she says.
It is not unusual for parents with special needs children to make career changes, or to reevaluate their career paths. Sizemore's training is in Information Technology, but he stayed home with Mackenzie while his wife worked, and taught himself woodworking. Now, he builds custom cabinets, a job that gives him scheduling flexibility. Crotty had been pursuing graduate work in counseling when Samantha was born. She shifted to become a social worker and now works in a neonatal unit, helping new parents of children with disabilities to adjust. Bennett had to quit her job because Megan's needs were too intense for her to stay in day care.
National author Loriann Hoff Oberlin has seen her experience as a mother of two children with different disabilities bring both focus and meaning to her writing. "It's never easy to admit to or adjust to a child's diagnosis," says Oberlin. "My oldest son had some learning challenges diagnosed when he was in 1st grade. . . . At the same time, my toddler turned 2 after having been born three months premature. He'd been receiving early intervention services in the home, and was diagnosed at 2 with chronic asthma and developmental delays. Around that same time, my husband decided after 11 years that we needed a separation . . . it left me to shoulder not only typical parenting responsibilities, but also advocating with schools and working with clinicians of various sorts, not to mention becoming embroiled in family court because he (her ex-husband) was not open to problem-solving with me."
Oberlin coped by networking with other parents, and channeled her frustration into writing. Her youngest child's needs for physical therapy and frequent doctor visits strengthened her resolve to remain self-employed, and she is now the author of numerous books, including "Working At Home While the Kids are There, Too," "Surviving Separation and Divorce," and is co-author of "The Angry Child" and "Overcoming Passive Aggression." She is now pursuing a master's degree in clinical counseling at Johns Hopkins University.
Most learning came from trial and error, and persistence. "I basically had to raise a fuss, write letters, spend valuable time on the phone," she says. "Educating yourself is vital," says Oberlin. "How could I expect my son to manage himself . . . if I didn't make the effort myself, at least modeling that when faced with challenges, you learn about them, meet them head on?"
Ruby Navarro's daughter Olivia has cerebral palsy. Navarro says that according to statistics, approximately one percent of the U.S. population has a disability. Although Navarro was told at Olivia's birth that the baby would have no capabilities and given the option to sign her over as a ward of the state, Navarro refused. "I thought was such a devastating thing to put on a baby, a family," she says.
Navarro now works with the Allegro Foundation. Allegro provides services for children from ages 3 to 21, starting with preschool classes and early identification/intervention. The Foundation helps parents connect with each other, and also blends movement instruction with medical and educational expertise to help children with disabilities learn and grow. Navarro is excited that a group from Allegro were the first children with disabilities to perform at the White House in 2004. In 2006, the Allegro group has been invited to perform at the July 4 event on the National Mall. They will visit Walter Reed Army Hospital, and perform with the U.S. Army Jazz Band as the opening act for the main performance, usually a nationally-known celebrity. "I don't accept the pity part," says Navarro of her daughter's condition. "Being in the public eye with kids with disabilities is the only way to get people thinking."
"Every day, there's a child born somewhere with a problem," says Tony Sizemore. "What is amazing to me is how we are all a family of some sort." Sizemore is grateful for the support network of parents who — even if their children have different types of needs — create a safe place to explore concerns, vent frustrations and seek resources.
Progress comes day by day, until it is possible to look back and see how much has been gained. "I'm really starting to be amazed at where we're at," says Sizemore of the journey. "We've done what any parent would do. . . . Mac's done the rest." Attitude is everything. "I decided at the beginning that I wasn't going to let this destroy our lives," he says.
While it may never get easier, it does get better. "The pain of that will never go away, because the loss of that dream is a very significant loss," says Kingsley's poem. "But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland." |