Parking and Other Perks

Sometimes when I get off the phone with one of my closest friends, I’m struck by how different our lives have become. We grew up together in a typical, middle class suburb in Connecticut. We lived in nice subdivisions and attended public school. Neither of us stood out in any particular way.

Now she lives in a rural part of the country. And I mean rural. She raises chickens for the eggs and, occasionally, for the meat. When she wants a hot shower she chops wood and lights the burner on the boiler to heat the water. She grows her own vegetables and keeps a “parts car” in her driveway. She has three wonderful boys – all typical, healthy kids.

When I want a hot shower I turn on the faucet and wait a few minutes. When I’m hungry and tired there are places that will deliver pizza to my door. I shop at a grocery store for fresh veggies and have a mechanic repair my car. I have my two girls – one with special needs.

When we talk, my discussions about therapies, surgeries and IEPs that sound so mundane to me must strike her as surreal. Her kids get up in the morning and go to school. There are no discussions about inclusion. No meetings to arrange for adaptations. No plans to handle extended absence following surgeries.

Her boys participate in Boy Scouts and play Little League. She has never hunted for an adaptive sports league or forced her way into an organization in order to give her child a glimpse of a typical life. I’m sure she wonders how I learned to write a Medicaid application just as I wonder how (and where!) she learned to pluck a chicken.

How could two such ordinary people end up leading such extraordinary lives? Yet, most of the time neither of us sees our own life as extraordinary. I do what I have to do to give Amanda the best life I can. Just as she does what she has to in order to give her boys a good life. However, we both have to do very different things to meet those goals.

Despite our different life styles, we always make each other laugh. She can help me see the levity in a botched diagnosis just as I can help her find the humor in her daily grind. When I talk to her I realize that although my life is very different from the lives of the people around me, lots of people’s lives are different. And different isn’t always bad even when you didn’t chose it.

After all, I get great parking spaces when I travel with Amanda and I never, ever have to kill my own food.

Broken Hip, Broken Heart – A Cautionary Tale

This is a sad story, not the kind I like to write.

Recently, Amanda fell and broke her hip at school. Here’s the heart breaking part of the story from a mother’s perspective. This is the second time that Amanda has taken a serious fall at school that has ended in surgery. This second fall was both foreseeable and preventable had the Fulton County School System acquiesced to our request for dedicated paraprofessional to oversee Amanda’s safety four years ago. 

Amanda - bowling before the fall

Even more agonizing to me than the injury has been the Fulton County School System’s complete lack of regard for my child’s safety or concern for her recovery. The Fulton County Georgia Risk Manager was slow to return our calls, didn't provide us with contact information that we asked for and essentially ignored our repeated requests for information and reasonable accommodation following the accident. His stand was quite simply “you can’t sue the County.” Tragically, that’s true. It’s called sovereign immunity. Generally speaking it is the doctrine that the State cannot commit a legal wrong and is immune from civil suit. It’s a vestige of the old English law “you cannot sue the King.”

Doesn’t the State have any obligation to protect the health and welfare of the children attending public school? Most people assume that it does, however, that is not the case. Had the same event happened at a private school, negligence and liability would be fairly easy to prove. However, because Amanda attends public school it is irrelevant whether or not the school, County or State was negligent. You, the taxpayer and parent, have no right to pursue legal action against a State entity. In most states a parent would be able to sue the State’s insurer. However, Georgia is self-insured, meaning that there is no separate entity to assume liability and cover resulting damages.

Amanda following surgery June 2011

We all have certain expectations when we send our children to school, whether they are typical children or have special needs. Most of these expectations would seem reasonable to the common man. Is it unreasonable to expect that when you put your child on the school bus he or she will be taken to the school you were told they would be attending? Is it unreasonable to expect the school to call or otherwise notify a parent if the child is delivered to the wrong school? Is it further unreasonable to expect incidents such as a slip and fall to be promptly recorded and the parents notified in a timely manner?

If these expectations are all reasonable doesn’t it follow that it is reasonable for the School System to assume liability for the accident?

In this situation, the school’s actions both before and after the incident can certainly be called into question under the “reasonable person” concept of law. Here is what happened:

On June 7, 2011 somehow Amanda ended up at Centennial High School in Roswell, GA instead of Alpharetta Elementary School. We had been told that she would be continuing at Alpharetta Elementary for Extended School Year (ESY). She had her backpack with her, on the outside was a photo ID of our family with our names and contact information. No one called to let us know that she had been transported to the wrong school.

Apparently one teacher recognized her and they called Alpharetta Elementary School. Between the two schools it was decided to leave her at the high school for the remainder of the day. Neither school called us.

Sometime around 9:00 that morning Amanda fell. There was no visible bruising so the school continued to force her to walk, despite her complaints. Amanda is non-verbal so her complaints typically consist of grunts, moans and howls. She doesn’t cry.

Finally five hours later, the decision was made to call the Special Needs Nurse.  The nurse called me from her cell phone on her way to the high school. It was then that I learned where Amanda had been all day. I could immediately tell from her description of Amanda’s behavior that it was a serious injury. I called my husband, Kevin, and sent him directly to pick her up (of course, he too, wondered why she wasn’t at the elementary school.)

When Kevin got to the high school, there was no written accident report available, but the teachers described the incident to him. He took Amanda to her primary care physician where they x-rayed her right leg. While Kevin was waiting for the x-rays to be read the ESY coordinator from the Elementary School called me at home and said, laughing, “Do you know that Amanda’s been at the high school all day?’ “Yes, I do now, and I think she has a broken leg’” I shot back. The poor woman hadn’t been informed of the accident either.

Upon x-ray it was determined that Amanda had a femoral neck (hip) fracture. Kevin drove Amanda to the children’s hospital in downtown Atlanta and she was admitted for emergency surgery, roughly 11 hours after the fall.

The fracture was misaligned and required two surgical screws to hold it in place. During her recovery Amanda struggled to breath. Three days later it was discovered that the lower section of her right lung had collapsed, possibly due to the surgery, possibly due to her fall. She remained on oxygen for a week following the surgery. Due to the severity of the break she came home with a “No Weight Bearing” restriction. That meant no standing for transfers in and out of bed, a chair or her wheelchair.

More than two weeks after the accident we finally received a written accident report from the school. Right now her prognosis is good.  There is a possibility that due to the delay in reporting and treating the injury critical blood flow may have been interrupted to the bone. Osteonecrosis (bone death) occurs when part of the bone does not get blood and dies. It occurs in a small percentage of fractures of the neck of femur, because the blood supply is interrupted. If this sets in, Amanda may require a hip replacement. Naturally we don’t expect this to happen.

But, then again, we didn’t expect Amanda to have a second serious fall at school. The first fall occurred in May, 2007 during a “water day”. Her teacher called to tell me that Amanda had fallen and "fussed a little"; not to be surprised that there was a small bruise above her lip. She didn’t give me any other information about the accident - where it happened or how. When Amanda got home I noticed that she had broken a front tooth below the bruise. I immediately took her to the dentist and had it repaired.

Within days it became apparent that something had also happened to Amanda's back. The previous year Amanda had “growing rods” surgery to correct severe scoliosis. The plan was to lengthen the rods incrementally over the period of several years in order to avoid a complete spinal fusion. We were careful to put in her return to school documentation that a fall could result in a very serious injury to her.

Broken rod May 2007

We took her to her orthopedic surgeon who determined that the top of Amanda's right rod had completely dislodged from the bone. This required major surgery - a full spinal fusion years ahead of schedule. To the best of our knowledge the teacher didn’t call the nurse or file a report even though she knew Amanda had the potential for serious complications if she fell. We asked for, but never received, an accident report.

We wrote a letter to the school, explaining the circumstances of the accident and subsequent surgery. At the time we requested that Amanda be assigned a dedicated paraprofessional to ensure her safety. Our request was ignored. Had it been granted Amanda most likely would not have experienced this second fall and resulting complications.

Right now we are spinning our wheels – quite literally as Amanda is now in a wheelchair. We are concerned about how we can protect Amanda going forward when we are working with a nonresponsive school system.

I ask you, what would a reasonable person do in these circumstances?