A family’s journey with cerebral palsy

http://www.post-gazette.com/stories/life/lifestyle/a-familys-journey-with-cerebral-palsy-690072/

June 2, 2013 12:25 am

By Tina Calabro

Baby Mark — nearly 1 year old — is studying his outstretched hand. The  hand moves ever so slightly, more from gravity than intention, and Mark keeps  gazing at this strange new object. It’s the first time Mark has contemplated his  hand with such concentration, so I am watching, too. Absorbed in the sight,  suspended in time, wondering what this discovery might mean about my little  boy’s brain.

With these words 17 years ago, I invited Post-Gazette readers into my new  world as the parent of a child diagnosed with severe cerebral palsy. This week,  as Mark graduates from high school, I invite you to meet my son again and to  look back on our family’s journey.

Much like the mother I was then, I still look at my son with watchful eyes,  but now they fall less anxiously upon an extraordinary young man and produce a  different kind of wonder — not only for his personal achievements but also for  all who have had a hand in them.

Mark’s cerebral palsy — the umbrella term for conditions resulting from a  brain injury that occurs immediately before, during or after birth — was the  result of oxygen loss during a difficult delivery in which my uterus ruptured at  the site of a previous Caesarean.

For several hours after birth, Mark breathed by machine. Over the next few  days, seizures came, went and — inexplicably — never returned. An MRI showed  damage to the basal ganglia, the part of the brain that controls movement  coordination. Multiple disabilities and complex medical problems were a  certainty.

After a month of intensive care, our baby, still frail, came home with me, my  husband Dave and our then 5-year-old son, Paul. Because of weak and  uncoordinated swallowing, ingesting anything by mouth was not only frustrating  for Mark but also dangerous. Within weeks, he needed a feeding tube, which he  uses to this day.

In his early years, Mark’s motor development lagged far behind, and yet in  other ways he flourished. He was bright and responsive. Any small accomplishment  — holding his head up a few seconds longer than the time before — heartened  us, despite its distance from normal expectations.

But such moments were easily eclipsed by reality. “What can he do?”  a friend asked over the telephone one day, unintentionally stinging me with a  reminder of that distance.

It was a simple but profound question. Mark could not then, nor would he  ever, be able to do much physically. So how, I asked myself with great anxiety,  would he ever find his place in the larger world?

Only the ins and outs of daily life over many years could reveal the  counterbalance between the passion for life within our son and his serious  impairments. Just as important was the gradual realization that countless people  were committed to removing obstacles to his development as a full human  being.

Our son in cap and gown was their vision, long before it was ours.

“All of us do not have equal talent, but all of us should have equal  opportunity to develop our talents,” John F. Kennedy said in a 1963 speech,  presaging five decades of national discussion about the inclusion of citizens  with any type of difference in mainstream American life. Mark, who grew up amid  this discussion, found doors opening that would permit him to reach his  potential.

On Saturday, Mark will arrive at the graduation ceremony with all the visible  support that has become second nature to him — custom wheelchair, electronic  communication device and a medical backpack. More important, he will arrive with  knowledge of William Shakespeare and Frederick Douglass, of Mozart and  Michelangelo, of Rachel Carson and Charles Darwin. With a gang of friends he  calls his brothers. With plans to attend community college.

Like all graduates, his family will celebrate him not for what he can do, but  for who he has become.

Ingredients of support

To raise a child with significant disabilities is to be a perpetual student.  Naturally, there is hands-on medical and therapeutic care. Far more challenging  are the emotions resulting from chronic sacrifice, relationships in need of  attention, the sibling whose life is also affected and simply coming to terms  with the medical condition you’re up against. Cerebral palsy means brain damage.  You can’t fix it even though you can mitigate its effects. It is stronger than  you.

You also discover, usually by surprise, that you must teach others. The same  friend who inquired about Mark’s development later asked another pointed  question out of concern for my welfare as a caregiver: “How long can you keep  this up?”

My friend was thinking about the not-so-distant past when children like Mark  were sent to institutions. She wasn’t familiar with the changes that began in  the 1970s with legal battles to close institutions, ensure appropriate education  and support parents so they could raise their children at home.

Thanks to those efforts, Mark was lucky to be born into an enlightened age  and society. Mark’s civil rights and practical necessities are well defined. As  parents, we felt supported to do our job.

Not that the work is ever done, and that’s a lesson, too. To raise a child  with a disability is to accept advocacy as a way of life and to teach your child  to speak out to the best of his or her ability. Parents of children with  disabilities often work together to maintain the gains for which our  predecessors fought in decades past. The terminology of those groundbreaking  accomplishments resound like mantras — “right to education,”  “self-determination,” “home- and community-based support,” “reasonable  accommodations.”

Set up for success

It is an unending task, this collective advocacy for best practices and  adequate funding, but there is no question that our region, state and nation  have come a long way as a result.

Because of these efforts, Mark was set up for success. When he first arrived  home from the hospital, therapists came into our home to introduce us to the  team approach that is the hallmark of high-quality disability services.

As Mark entered preschool and kindergarten, the Pittsburgh school district  encouraged us to place him in a regular school, assigned a personal-care  assistant and identified the services that would enable him to learn alongside  his peers. Thanks to experts in the field of augmentative and alternative  communication, Mark communicates effectively even though he cannot speak with  his own voice and completes schoolwork without the functional use of his  hands.

Mark’s main source of motor control is his head. He activates his DynaVox  communication device with switches positioned near each temple. Those switches  also enable him to drive a battery-powered chair and use a computer. At age 5,  Mark taught himself to read by playing around with letters and sounds on a  screen. At 10, he learned to compose simple melodies using computer software. At  16, he got an electronic drum machine and formed a band with friends.

Mark’s medical needs are complicated, and answers do not exist for every  condition. His overall health is fragile. He gets sick more often and more  seriously than most people. All of this is frightening for him and for us, but  the outstanding medical resources in our region make our path easier to  travel.

Mark is also well supported in his transition to adult life. Because he is  legally entitled to special education services through age 21, the school  district will hold his diploma until he completes its CITY Connections program.  Through the program, he’ll take classes at Community College of Allegheny County  and learn the skills of independent living. Mark will always need a personal  aide, but he wants to be as independent as he can.

This transition stage for students with disabilities is much on people’s  minds these days. Because of a surge of new attention, many young people are  feeling more encouraged about their prospects and parents are feeling less fear  about the future. Through a Pittsburgh Public Schools initiative called “Start  on Success,” Mark is already applying his computer skills in a part-time job at  the Woodlands Foundation on the Marshall/Bradford Woods border. The Children’s  Hospital Advisory Network for Guidance and Empowerment is preparing Mark and  other teens to take charge of their own health care. United Way’s 21 and Able  project (which I am involved with as a consultant) is creating pilot programs  and policy proposals that will help young adults achieve employment and other  goals.

Indeed, over the years of Mark’s upbringing, the opportunities for people  with disabilities grew along with him. There’s still a long way to go, however,  to achieve the essential promise: “We hold these truths to be self-evident. That  all [people] are created equal.”

Problem with superlatives

Please don’t tell Mark that he must be a genius like Stephen Hawking, the  astrophysicist with amyotrophic lateral sclerosis, just because they both use  communication devices. Mark accomplishes more than you might expect, but effort  and perseverance are the keys, not amazing mental prowess.

Don’t put him on a pedestal, but don’t pity him either. The middle ground is  good: openness and understanding. Mark lives a complex reality of dependence and  independence. He needs help to do many things, yet he wants to give as well.

The simple signs of acceptance matter most, not the grand gestures. When Mark  is in the school hallway and someone calls out, “Hey, Mark,” as he rolls by, it  speaks to a deeper place than high praise ever could.

Which is not to say that Mark never feels isolated or left out. He does. But  he understands that connection requires reaching out from both sides, and he  keeps trying.

Seventeen years ago, when I wrote about our “new world” with Mark, I didn’t  know how disability would merge with the general flow of life — I just knew it  had to. I certainly could not imagine our son speeding through the busy hallways  of a typical high school, but he does.

Seasoned disability-rights advocates pointed the way to opportunity and  taught us the strategies to get there. As a mother, powerful instincts welled up  in me, insisting that Mark would not be denied his dignity or the best that life  has to offer. With fatherly, protective love, Dave was ready to crusade for  Mark, too.

There’s a different kind of grace in the journey that disability takes a  person on. The professionals who work with children with special needs — aides,  nurses, therapists and so many others — allow their connection to evolve well  beyond their duties and accept profound feelings in return.

The parents of other children with disabilities are the sisters and brothers  with whom we share what is largely unspoken in our daily lives — hopes and  fears, triumphs and losses. We are different people because of our children,  sometimes transformed in implausible ways, like finding ourselves able to speak  out for our children in a manner we may not ever have had the courage to do for  ourselves.

Learning to swim

When Mark was born, I worried about the childhood his older brother would  have. Life would no longer be simple. But early on, I saw the seeds of kindness  and patience in Paul. Today, he is like so many other young adults who have  grown up understanding disability. Studies show that many of these siblings go  into helping professions or are more caring people in whatever profession they  choose. My heart fills with pride over both my sons.

I now see myself in the younger mothers who watch their special children  closely, like the mother who recently posted on a message board about her son’s  valiant effort in his first martial arts class:

“… My little boy with low muscle tone was trying desperately to do  everything that the other kids were doing. My little boy with no attention span  was trying so hard to pay attention. [I saw that he is not quite ready] for  martial arts, but my heart just about burst because he has come so far.”

I have almost stopped watching Mark so intently, something that has become  our private joke. “Stop staring?” I ask him when he catches me doing it. He  replies with two quick blinks — which signal “Yes”– and a very patient  smile.

Like most parents of children with special needs, we will never be off duty,  but we can start letting go. Mark wants us to, and we need to.

Not long ago, the expression “sink or swim” came up in a casual conversation.  Mark seized the opportunity to drive a point home. “Let me swim,” he wrote on  his screen.

Up to now, Dave and I have made the decisions that shaped our son’s life. Now  Mark gets to decide.

And his story is his to tell, not ours.

 

Tina Calabro of Highland Park writes the  “Breaking Down Barriers” column about disability issues for the PG. Contact her  at tina.calabro@verizon.net. First Published June 2, 2013 12:00 am

Read more: http://www.post-gazette.com/stories/life/lifestyle/a-familys-journey-with-cerebral-palsy-690072/#ixzz2Y08U6AEq

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