Special Needs Parents

By LOU FANCHER

All kids are special.  All kids have needs.  So why is parenting a special needs child a hot topic for news articles, books, documentaries, television talk shows, doctoral dissertations and even Congressional hearings?  Maybe the fascination lies in the fact that there’s no road map: it’s a journey of the heart like no roller coaster you’ve ever had the scream-inducing pleasure to ride on.  Or maybe, it’s America’s survivor complex: a national curiosity and vicarious pleasure in witnessing super human accomplishments.  That is to say, maybe we’re interested because it’s so darn hard.

Of course, all parenting is hard.  Let’s make that clear before we waste time comparing one child’s behavior and abilities to the next.  What sets parenting special needs children apart, above, and well beyond the norm, is its sum total.  It’s the accumulative effect of the physical, social, behavioral, financial, emotional, developmental and psychological hurdles that wears down even the most devoted, energetic parents.

Need a picture?  Try these: Imagine your child requires fifty minutes of therapeutic exercises just to achieve verticality each morning.  Imagine working every day, six hours a day, seven days a week, for three months, teaching your nine-year-old to say “ba,” at the sight of a banana.  Then imagine him forgetting “ba” when you skip the therapy one day.  Or, imagine the tantrum of a typical three year old, then adjust the picture so that the explosion erupts from a fifteen year old, stretches on for more than an hour, and afterwards, your living room furniture must be replaced.  Oh, and recall that the last time this happened, (yesterday,) the neighbors called the police, believing a domestic dispute was occurring.  Finally, imagine medical bills rivaling the national debt or the amount of money the stock market lost in February.  Now, you have a glimpse of the sum total.

Lest anyone feels compelled to protest the bitter truths above, let’s be quick to count the blessings of parenting these special children.  Raising a child is perhaps the richest life experience on the planet.  There’s nothing like it for wiping that cosmetic layer of self-assurance from your parental facade and there are no words more honest than the, “We’re doing our best,” spoken in a broken whisper between two loving parents at the end of a long, challenging day.  At the other end of the parenting spectrum, there’s no major athletic accomplishment, no escape from near death, no lottery jackpot large enough to rival the joy found in a special child’s first step, word, idea, or expression of affection.  Parents of children with unusual challenges either celebrate these small moments or go crazy.  There’s little in-between.

Rachel Chew, the proud, weary mother of three boys, speaks for many Concord parents, saying, “I look to the right, I look to the left—at children living with more severe disadvantages.  Then I look at my son and am thankful for what I do have.”  Underneath Chew’s gratitude for having a “whole new outlook on life and what’s important,” she feels compelled to confess, “We know our son isn’t getting everything he needs.”

So how do ordinary, fallible, imperfect people do it?  And when they can't do it, when they are overwhelmed, who is there to help them?  Often, regardless of the particular challenges, the answer is the same: family, friends, faith groups, early intervention programs, and teachers.  

Despite dwindling resources, parents can find pools of support and information through their local school system.  With a mandate from the federal government to provide appropriate services to all students, districts are legally obligated to provide what amounts to minor miracles on a daily basis.  Dr. Mildred Browne, Assistant Superintendent for the Mount Diablo Unified School District (MDUSD), while still reverberating from the latest “over eight million dollars of horrendous cuts to both special and general ed,” searches for hope in the upcoming stimulus package. She points to one-time funding possibilities and notes the school system’s obligation to continue existing support paths.  The commitment to the task ahead, (doing just as much with a considerable amount less,) is unmistakable, if improbable.  Dr. Brown outlines the trajectory of special education: bemoaning the test-centric focus of today’s system, mentioning with something near glee in her voice the newly-hired parent liaison for special ed services, and finishing our interview with, “We’re not only teaching kids to read and write, we’re raising citizens for tomorrow.”  Down, up, down, forge ahead—the school system’s destiny.

Beyond the school yard, area parents find support from the Regional Center of the East Bay (RCEB).  Children must qualify for services, a process that can take months, and assistance is often provided on a sliding scale.  Here too, the current economic crisis impacts what parents can expect.  A recent mailing from RCEB, appropriately printed on fire engine red paper, contains a dire message that “the legislature and Governor passed budget legislation which includes significant funding cuts for the Regional Center system.”  Still, the technological devices and respite care RCEB offers is a saving grace for families.  Another avenue of support parents investigate is the County Mental Health Clinics, funded by the state.  Unfortunately, budget cuts, waiting lists and tough qualification standards leave a cluster of families without support.

“Schools try so hard not to be helpful, it’s not worth it to try,” Joel Harris states bluntly, when asked about his experience in Clayton.  “It’s probably better here than other places,” he continues, “But we find it’s the teacher who does all the special accommodations, not the special services.”  Discouraged, even bitter, Harris and his family have sacrificed a great deal to help their child.  Work your imagination again: four to five therapy appointments per week, six hour medicinal “vomit festivals” a day, little time for the other kids, no money or energy for family outings, and who is that other person—a spouse?  It’s no surprise that 87 percent of all married parents of special needs children watch their marriages tumble and fail.

If they haven’t collapsed under these burdens, parents move to the pinnacle, the ultimate, the Mount Everest category of help for their child.  Whether it’s working with the dexterity of a ballet dancer through the byzantine machinations of private insurance, organizing private fundraisers and charity events, or calling upon the simple generosity of churches, family, and friends, these ordinary moms and dads find ingenious ways to raise their extraordinary children.  They know the responsibility lies with them, as it does with all parents.  No one else is going to travel as far, reach as high, or last as long in the quest to provide what their children need most.

This truth means that parents of special kids must think about the future early on.  What will happen to my child if something happens to me?  Will my child be able to live independently?  How can I protect my child and prepare for his or her future as an adult?  Special needs trusts, wills and specific financial arrangements outlining the parameters of care for their children are a must.  Local libraries and the internet are good sources of information, although parents may find the legal complexities overwhelming.  Those with better luck and greater resources typically consult a lawyer specializing in estate and special needs trusts, a lengthy and expensive item on an already full plate.

Gina Hale, a mother of a special needs child in the Concord school district, needed three years, an attorney and almost two times her annual salary to gain school placement for her child.  Facing a lifetime of family outings where “accessible” means “if you can get through the door that is too narrow for a wheelchair and over the terrain that is closer to an obstacle course than a pathway,” Hale’s voice shakes with fury.  “Every student of architecture or landscape design should spend a week in a wheelchair before getting a degree.”  About the public schools, she’s skeptical, saying, “You can’t be a watchdog for the budget and an advocate for my child at the same time.  It’s a conflict of interest.”

This realistic glimpse, this brief portrait of raising a special child may appear grim, even foreign, when compared to a typical experience.  But hold on, let’s go back to where we started: “All kids are special.  All kids have needs.”  After love and enthusiasm from their parents or primary caregivers, all kids just need a chance.  An opportunity to learn and someone to catch them when learning involves falling.  They need summer camps and books and picnics.  They need to be challenged, recognized, honored.  If you know a family with a special needs child, you know a family with struggles like your own, theirs just last longer and rise higher.  Try not to think of these special parents as separate, or different, or even better—simply offer your understanding, then pitch in and help.