Minor Miracles

Minor Miracles - Adaptive Softball League

This article first appeared on the Exceptional Parent website in April, 2008. We owe special thanks to so many of Amanda's teachers and paraprofessionals who volunteer their time to Miracle League!

We are very fortunate to have an adaptive softball league near our home. The North Metro Miracle League (NMML) provides inclusive adapted sports for children and adults of all abilities. As their website states, “Each of the NMML players has an on field Buddy to assist with the things the player’s disability makes difficult or impossible. The resulting interaction between buddy and player is an essential part of our mission. We want to remove the barriers to inclusion, accommodation and friendship that often arise just because a person has a disability.”

Amanda has been playing softball with NMML for six seasons now. The environment at the games is relaxed and supportive. During the first season she spent most of the game crying and trying to escape the field. Amanda rarely expresses emotion. It is as unusual for her to cry as it is for her to laugh or smile. My husband and I had to reassure ourselves on every drive home that we were doing a good thing.

During Amanda’s second season, another dad called out, “Way not to cry, Amanda!” There couldn’t be a nicer group of people involved in children’s sports. Everyone cheers as each player walks, rolls or is carried into home plate. There is no score. Still, we felt awful taking her.

We told each other that Miracle League was a good form of exercise for a child who has difficulty walking. We discussed the value of fresh air and socialization with her peers. We’d quote Tom Hanks from the movie A League of Their Own, and remind Amanda, “There’s no crying in baseball.” But mainly, we felt terrible that every Saturday morning we forced our little girl to do something that made her cry in the name of “fun”.

Of course, Saturday morning softball wasn’t the only time that we’ve had to force Amanda to do things she doesn’t want to do. We made her go to therapy several times a week for years. We’ve taken her to have multiple surgeries. In a way, going to baseball toughened us up for all of the other things we had to do for Amanda's benefit.

The most surprising outcome of our participation in North Metro Miracle League has been Amanda’s friendship with Erin. A typical teenager, Erin is Amanda’s first and best friend. For the past three years, Erin has been spending her Saturday mornings acting as Amanda’s Miracle League buddy.

With Erin’s gentle guidance, Amanda stopped crying during games. She even began to cooperate. Now she looks forward to going every Saturday morning. At the beginning of this fall season Erin called to let Amanda know that she was going to be her buddy again. Amanda was so happy that she made a card for Erin. Amanda never draws or colors voluntarily. That in itself was a minor miracle.

Erin’s friendship has expanded beyond the baseball field. She has helped us out at home - she even came to Amanda’s birthday party! Due to her disabilities, Amanda finds social interactions difficult. However, Erin never makes Amanda feel different. They enjoy each other’s company and smile when they are together. Just as the website promised, playing softball really did remove a barrier to friendship for Amanda. As far as we’re concerned, more than exercise or fresh air that has been the biggest miracle to come out of the North Metro Miracle League.

Different Dreams

 

Parenting a Child with Special Needs

This seems somewhat unfinished to me. Maybe it's because I wrote I wrote it when Amanda was only 6 years old...

My life is dramatically different than I ever imagined it would be. I suppose that’s true for a great many people. Only people with clear vision and great drive end up pursuing their dreams.

 I’m not sure I ever had a dream. Or if I did I was only aware of it that way you are when you are first awake and your dreams are half-remembered. As soon as you try to articulate them they slip away.

When I was younger I wanted to be many things. Some of them realistic, some not. I wanted to be a writer, a poet, an actor, a lawyer, a mother… I left the idea of law school behind when I foolishly entered an MBA program in my early twenties. I was probably the least mathematically inclined student to ever be enrolled in business school.

Still, I intrepidly entered the business world armed with the softest business discipline I could find – human resources. Fortunately for me, I landed in a position that focused on developing employee training programs. A good fit for some one who enjoyed research, writing and lots of attention. I spent several years as a corporate trainer, occasionally flying around the country to conduct multi-day seminars. I liked it. I was good at it. I had a job with flexibility, good pay - where people often clapped for me at the end of the day.

In the summer of 1998 I was six months pregnant and planning on a maternity leave of 9 months. Then the unimaginable happened. I went to a routine prenatal exam and my first ultrasound. Everything was fine. However, when I got home there was a message on my answering machine from the doctor I had just left with six scary words, “we need to see you again.”

As it turned out, after reviewing my ultrasound the doctor spotted what appeared to be a cardiac abnormality. My husband had a business trip and flew off the morning of my level two ultrasound appointment. Neither of us expected them to find anything more serious than a heart murmur. Still, in the back of my mind I knew my mother had lost her first baby to a congenital heart defect.

The memory of that appointment still has a nightmarish quality to it. At first things seemed to be going well. The attendant asked if I had brought a videotape so I could see the baby at home. I hadn’t. I figured that was good news. No one would want to send me home with a video of a horribly disfigured baby.

The doctor looked at the ultrasound and mumbled to himself a little. Then he left the room. I tried to determine what I was looking at on the screen. It was a fuzzy black and white picture, worse than the picture on the TV I grew up with in the 70s. I could roughly make out the ribs and things moving. The doctor came back with another doctor. Then they both left. Now I was getting scared. They came back with a third doctor. "What could be so awful that my unborn baby needs three doctors?" I worried to myself.

All three doctors left and the first one came back alone. He sat down on the edge of the gurney and reached for my hand. "Oh shit," I thought, "this is going to be really bad". He calmly explained that it looked like the blood was flowing backwards through part of my baby’s heart. After consulting with his colleagues they felt our child had only three chambers to her heart instead of the usual four. This meant all sorts of bad things that I couldn’t process. All that stuck in my head was the phrase “cardiac defects are rarely in isolation” meaning that my baby could have a bigger problem than missing part of her heart.

They wheeled me down the corridor and announced that they needed to do an amniocentesis. I didn’t think of the potential complications, oddly all I thought of was that I was in a HMO and I hadn’t gotten authorization for an amnio. I grabbed the side of the door frame and made them call my insurance company for an approval before I let them take me in. I remember jumping off the gurney in maternity pants and a sports bra, threatening to use the phone in the lobby unless some one called the insurance company RIGHT AWAY. I guess I thought it would be an expensive procedure. More likely, it was my subconscious way of trying to avoid it all together.

As it turned out the amniocentesis was normal. Only later did I learn that amnios test for only a fraction of the existing genetic disorders. I spent the remainder of my pregnancy worried about my baby’s heart, but feeling confident that over all she would be fine. I stopped working because the doctors were concerned I would go into labor out of state and wouldn’t have the necessary medical facilities for the baby close by.

There’s no need to go into the labor or delivery. Just trust me when I say they weren’t normal. With a life flight crew standing by to wing my newborn away the minute she showed complications the delivery room was more like a stage – with a dozen doctors and nurses standing by.

Amazingly Amanda didn’t need immediate heart surgery. As it turned out although her heart isn’t structured just like ours (parts that should go around apparently go through it instead) it works. Feeling grateful that we had dodged not a bullet but a cannonball we were took her home with us after only five days in the Neonatal Intensive Care Unit.

As first time parents, a thousand miles from our families, we had no idea there was anything still “wrong” with her until she was six months old. While she was rolling from side to side she had difficulty raising her head from the floor while lying on her tummy and she couldn’t sit unsupported. If we sat her up she just sort of melted into a prone position. We bolstered her in her car seat and her high chair with old towels and cloth diapers.

After complaining to the pediatrician that Amanda’s head seemed unusually flat on one side she sent us to a pediatric neurosurgeon. To say the man was an unfeeling jerk would be a compliment. To this day he was the most insensitive doctor or specialist we’ve seen. He looked at her, announced that she had Down’s syndrome and would “always be funny looking” so he didn’t feel it was appropriate to prescribe a corrective helmet for her. Our beautiful baby – funny looking? I don’t think the man will ever know how close he came to being decked by my 6’4” husband that day. The only positive thing to come out of that appointment was that I was able to persuade our regular pediatrician that Amanda needed physical therapy for tortocullis.

Little did I realize the treadmill I stepped on that day! We’ve spent the last 13 years in and out of various therapies, most with little or no impact. She’s had physical therapy for gross motor skills like sitting and walking, occupational therapy for fine motor skills, speech therapy, feeding therapy, aqua therapy, music therapy and hippotherapy (therapy on horseback). I freely admit that I tried some of these simply because I was frustrated with conventional therapy and thought that if the poor child had to spend seven hours a week with specialists at least some of that time should be fun.

Hippotherapy

Fun is hard to come by for some of us. Many of our kids can’t run and play the way other children do. Others don’t even understand the concept of play as we typically mean it. Holidays can bring as much pain as they do joy. Surrounded by the typical members of your family and their typical offspring, the stress can be almost unbearable. Physically impaired children may not be able to open their gifts without assistance. Cognitively challenged children may find the wrapping paper the most interesting part of any gift for years. Emotionally challenged children may just find the difference of a holiday too much to bear and close in on themselves.

Relatives don’t understand why tactile defensive little Suzie doesn’t love her fluffy new teddy bear or why Bobby has gone off in the corner to play Game Boy by himself. The children are stressed, the relatives are confused and the parents are in the middle trying to soothe everybody’s feelings.

It’s hard to explain to some one who has never raised a child with special needs what this life is like. While all children with special needs are different, as families we share many of the same experiences. All of us have known the disappointment of shattered dreams, learning to live outside of the norm and still try to function like a normal family. The cycle of doctors, therapists and specialists is exhausting for everyone involved. There is a financial burden and an emotional burden. There are days when you see a spark in your child that lets you hope they will some day be able to blend into the mainstream despite this difficult beginning. There are other days when you wonder if anything you’ve said or done has made a difference.

Aqua Therapy

You constantly have to recreate hope. Some of us do it by switching doctors or therapists or types of therapy. Some of us try alternative medicines, special diets or novel therapies. You constantly feel like you have to do more, do better and then maybe your child will be all right.

Sometimes you just quit. You take a week, a month or even a year off. You try to live like other people who don’t have a therapy appointment every day after school and two on Saturdays. Then something happens and you wake up, re-shoulder your burden and move on.

I’ve used the word burden several times and I don’t regret it. But children with special needs are often the source of unexpected joy as well. Who knows better the miracle of a first step than the parents who have waited five years for it? When your autistic child suddenly makes eye contact and you KNOW he loves you the world stops for a few seconds and tears run down your cheeks. By having so many of the normal joys of raising a child taken away from us we learn to appreciate moments that other parents may overlook. We've learned to dream differently.

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?