Listen to the Student! Meet the Student, Part 2

Meet Laura Fazio Series

If you were born missing a chamber of your heart, were a “blue baby” and lived with cyanosis and stroke related disabilities since the age of two, wore a leg brace and a hand splint, walked with an awkward gait, had limited use of your right hand, were compromised by visual field gaps in both eyes, embodied a pacemaker, were prone to arrhythmias, took daily heart medications and blood thinners, then you were Laura at age 12, a middle school student in a new school, accompanied by a lot of paperwork.  You would also have been a singer, actress, writer and a gourmet food lover who was kind, caring and creative, with a great sense of humor.  If you were Laura you would have been just like any other pre-teen, planning your future and thinking about what you wanted to be when you grow up.

Laura was much more than her paperwork. In essence, she was two people melded into one; Laura on paper and Laura in person.  Upon admission to Montessori, Laura’s paperwork preceded her arrival to the school. There were doctors’ letters, teachers’ reports, and occupational, physical, and vision therapy recommendations. Laura on paper detailed her stark reality. The cardiologist’s letter stated that Laura’s heart muscle was getting weaker, that she was getting “bluer” with declining oxygen saturation when walking and exerting, and that she was on a blood thinner that could cause a “hematoma,”a brain bleed if she fell down on a hard surface. In summary, vigilance and safety measures were needed along with a wheelchair for any walking beyond her small classroom, both indoors and outside. Her file consisted of an Independent Learning Program, IEP report and recommendations on how to assist Laura in her school work. Specialist reports detailed ways to make accommodations for  daily tasks that would be difficult for Laura, due to her stroke related physical disabilities. Paul and I were sensitive as to how overwhelming and daunting this may have been to a staff who would become responsible for Laura’s safety and well being at school every day. It was probably of no consolation that Paul and I would need to muster up an even bigger dose of trust for Laura’s safety when we dropped her off at school each day. Our hope was that school staff would read the reports thoroughly and take the recommendations seriously in order to keep Laura safe and happy at her new school. 

When it came time for the staff to meet Laura in person, we knew it would be a less fearful view than her paperwork.  The staff would encounter a bright eyed, smiling pre-teen, who was sweet, conversational, yet quite thin and small for her age.The teachers would be sure to notice Laura’s captivating personality and how well adjusted she was. At first sight, they might not notice the splint on her right hand, or the brace on her right foot and leg. Invisible to the eye, would be the “zipper scar” from her open heart surgeries, that ran the length of Laura’s torso, from the base of her neck to her belly button. Most invisible of all were her left field of vision gaps in both eyes, which caused her to read slower, lose her place on the page, and have difficulty looking up and down to copy notes from a black board. Laura also had visual memory issues from this same ocular stroke that afflicted her when she was a toddler. 

After school started, when teachers got to know Laura, and paid closer attention to her, they might see for themselves how the disabilities impacted her; when she struggled to do simple two handed tasks that most take for granted, while attempting to zip up her coat (she couldn’t do this) or when trying to tie anything (she wore velcro sneakers for this reason). They would soon see Laura fumbling to carry school supplies across the room, having trouble opening lunch containers, or pretty much anything that required two hands. The staff would also see Laura get tired and somewhat short of breath, and see her lips turn from purple to blue when she over exerted. They were never pink. We hoped that the information in Laura’s paperwork would be taken seriously and be put aside somewhat, enough to really see Laura the person.

Even though Laura’s learning profile was clearly documented and the staff had a chance to meet with her, I met with the Montessori teachers before school started,  the same way I had every other school year, to emphasize what was important to know and which  limitations she would need help coping with, especially the ones that weren't  glaringly obvious. To Laura’s credit, she was good at compensating for her differences and blending in with the other children. I was aware from past experience that if a person was less than observant, the need for accommodation could easily be missed.  We could only hope that her teachers would be on the alert, and ready to anticipate her needs, even if it required more work. We knew Laura would do well socially since she had made friends easily in the past and was friendly, respectful, and had a quirky sense of humor. Laura was fun to be around.  For Laura to be successful at school, it largely depended on how caring her staff was, and how well the recommendations were incorporated,  and whether or not a teacher checked in with her to see how she was doing.  Most of all, we wanted what all parents wanted, for our child to be happy at school.

By mid September, Paul and I had survived our first hurdle, when the school administrators’ fears of potential emergencies ran high. This fiasco prompted me to work with Laura’s cardiologist to create a direct link from the school to the town’s Emergency Medical Services, EMS. Emotionally derailed by the ordeal, we chose to reinvest in the school and go forward. We hoped that a balance could be had, that Laura would be seen as more of a person and less as patient. Paul and I banked on this, that Laura’s talents and enigmatic personality would carry more weight than her heart condition and disabilities. (To learn more, read my post, Dreams and Denial, Meet Laura the Student, Part 1)

We kept our fingers crossed that Montessori was still the best school placement for Laura. When I imagined Laura at school, I saw her in my mind as happy, walking around comfortably in a small classroom, making friends, pursuing her creative interests, and getting help from her teachers when she needed it.  This was opposite to what I imagined would have occurred if Laura had gone to the big public middle school in our town, more medicalized, with a full time paraprofessional and wheelchair dependent. When we asked Laura how things were going at Montessori, she said she was making friends and getting time to write stories, that she liked music, theatre and art class. She invited her new friends to mingle in with her childhood friends at a holiday party at our home. Laura seemed relatively happy. 

All was going as planned, until one day in January, when I picked Laura up from school and she blurted out,  “I hateMontessori, and I never want to go back!” 

Shocked, I tried to understand what happened. I thought back to a month earlier when Laura and I spoke in the car on our way home from the school. 

“ I don’t like my teacher,” Laura said, without mincing words.

Surprised, I asked, “ Why don’t you like your teacher?”  

“She doesn’t help me at all, Mom!”  

“You’re not getting help?”

“Mom, all she does is drink coffee and chat with the other teacher while we all sit on the rug doing our work!”

“ Why don't you go up and ask her for help if you need it, Laura?” 

“I can’t, it’s too embarrassing!” Laura demanded. 

“Just ask her for help. You have to start speaking up. I can go in and talk to your teacher about it, but could you try speaking up first Laura.  I am not there when this stuff happens. So you have to try and do it at the very moment when you need the help. Can you try?” 

“Maybe.” 

“I bet she doesn't even know you need the help. Ask her next time. Okay?”

“Okay,”  Laura conceded with resistance.

Later that night Paul and I tried to empower Laura to speak up for herself.  Though Laura was out spoken at home, it was hard for her when in the outside world.  In Laura’s world, her needs had been anticipated and met pretty regularly.  Paul or I were always at her bedside when she was in the hospital, advocating for her.  While in  elementary school, her special education teacher smoothed over any kinks and sorted out issues. We intervened when necessary. Laura had very little, if any practice speaking up for herself beyond her small circle of  friends and family. Having not yet developed the confidence or the skill, we knew she had catching up to do. Now that Laura was getting older, we realized how important it was for her to start speaking up for herself at school. 

When Laura went back to school she told us that she had spoken up and that things were better at school.  Later we discovered that Laura held back and didn’t tell the scope of her situation. The day that Laura blurted out, I hate Montessori, and I never want to go back, was the day she could no longer pretend everything was okay, the day she decided she couldn’t take it anymore, the day she told us everything she was feeling. 

Laura told us that when she finally got up the nerve to ask her teacher for help, she told her to ask three classmates for help first, before coming to a teacher.  Laura asked her classmates for help. This worked out at first, until the students became impatient with her, since she often needed help.  Laura stopped asking them for help.  She told us that it made her feel stupid to be constantly asking the other kids where to put her school work. Separate bins for  finished papers were placed on different shelves around the room.  Laura had difficulty finding the bins, while the other children found them effortlessly.  When her classmates balked at helping her, she stopped asking them for help. Laura struggled in silence when trying to do school work  she didn't understand. She guessed at the answers and at which bins to put her work in, which was usually unfinished.  Later on, she said that the teacher would scold her for putting her math papers in the social studies bin, the science papers in the literature bin, and for not keeping up with her work. When she went back to asking students for help, some of the kids sighed and rolled their eyes at her. Laura felt humiliated.  

Laura’s classmates were used to being in a self-reliant learning environment.  Most of them were Montessori kids since the primary grades, and used to working independently. Opposite to that, Laura had been a public school student with an IEP, accustomed to her teachers making adaptations in her school work, and taking into account her physical limitations and visual spatial issues.  Laura felt she had lost the friends she made at the beginning of the year, because they now saw her differently, as somehow less than them.  Laura was frozen and unable to admit she felt lost, so she stopped asking anyone for help. The teacher didn’t check in with Laura or make the necessary adaptations. Instead, Laura was expected to adapt to the classroom culture on her own. This led to utter frustration.  She was stressed out at school, everyday, as she struggled to keep up with her school work and class protocols. What we were hearing; Laura wasn’t happy at school.

In December, the school had made us aware of some changes they made for safety reasons that Laura wasn’t happy with. The plan for how Laura would be transported to the arts building for specialist classes, was abruptly changed. Originally, Laura sat in a wheelchair, and was pushed across the campus path by a student or teacher, helping to feel like she was part of the group. Instead, the secretary started driving her to the arts building, which caused Laura to feel uncomfortable and singled out. Due to medical reasons, when the weather got colder,Laura needed to stay indoors for recess. She found herself to be sitting in the classroom with only the teacher, while everyone else was outside having fun. Back in elementary school, Laura was allowed to have a friend stay inside to hang out with.  

As Laura got older she was becoming more self-aware of how her heart condition and physical limitations were impacting her life, making her different from her peers. As Laura saw her classmates enjoying  age-appropriate independence that she also craved, she knew she was still dependent on adult help.  Everything backfired. Instead of Laura feeling happy and feeling included, her differences were front and center, starkly visible to both herself and to her classmates.  Laura felt more medicalized, more ostracized and more lonely than she had felt ever before. The combination of everything made this an emotionally difficult time for her. It was a perfect storm. Laura came to a conclusion on her own; that she did not fit in at Montessori and that she didn't want to be there anymore. The bottom line, Laura wasn’t happy.

Paul and I were angry and upset with ourselves for not knowing this sooner. We were extremely disappointed with the school staff, and how our efforts to educate them on Laura’s needs were all for naught. Mainly we were saddened that Laura was unhappy at school, and that when she tried to speak up for her needs, as we implored her to do, she was shot down, unheard and too ashamed to say anything to us. Laura endured the situation while not telling us the scope of her feelings. She tried to make it work for herself, or maybe for her parents, since she knew how hard we worked to get into this school. When the situation became too intolerable, she decided that she had enough. This is when she told us without reservation, “ I hate Montessori and I don’t want to ever go back there!”

Paul and I were extremely saddened at how unhappy Laura was, but not entirely ready to give up on this school year. Unfortunately, Laura’s wanting to leave school right away, did not fit into a school schedule. It was the end of January, with five months left to the year.  Now that we knew how Laura felt, we knew something dramatic had to change for her to be able to stay at Montessori. I wanted to appeal to the potential good will of her teacher, tell her everything Laura felt, and see if I could make things better for her. 

We told Laura that she could definitely go to South Middle School for 7th grade, the following school year if she wanted to, but that she only had five more months left to get through, an eternity to Laura. 

“ Laura, I’m going to call the school in the morning to have a meeting, and see if I can make some changes, to make things better for you.”

“Mom, there is nothing that they can say or do that would make me go back there!” Laura was resolute!

  Baffled and confused about how to proceed, Paul and I told Laura that she could stay home for the rest of the week, to give me time to meet with her teacher, and give us time to think about how to proceed. 

The next morning I made an appointment with Laura’s teacher. Still hopeful, I planned to bring up some possible solutions. When I got to the school, the principal was in the classroom with the teacher. I began to tell them how Laura was feeling and that I wanted to brainstorm some ideas with them. Before I had a chance to present any of my ideas, the teacher began speaking, taking over the meeting with a strong start on a completely different subject. 

“Laura will need to stay back a grade and be in the mixed 4th, 5th, 6th grade classroom for another year. We don’t think she is mature enough to go onto the 7th grade next year.”

“What are you basing this on? Isn’t it too soon to be making these determinations?” I said, feeling taken off guard.

I was told that the middle school teacher had been interviewing the students to see who was a potential candidate for the next grade level, the 7th and 8th combined classroom. 

  The principal read what the teacher wrote in his report about Laura. 

“Laura is not mature enough and not academically ready to proceed to the next grade. We anticipate that Laura will have difficulty keeping up academically,or participate in outdoor learning in science exploration, or be able to attend our field trips. Furthermore, Laura does not yet have the maturity to be in this grade level. When speaking with Laura, I noticed that she’s not yet interested in boys, which is age appropriate.”

My thoughts and feelings ran rampant.  What? Not interested in boys? What does that have to do with anything?  I was stunned.  An alarm went off inside of me. The whole situation was just so off. Laura’s preference toward boys or not? This should not even be a consideration. How would they even know if this was her sexual preference? 

There was no point in continuing the dialogue. While ending our meeting, I could see what was happening. It was evident that Laura was not welcome at the school anymore, the following year, and this year for that matter.  The current school year issues weren't even considered.  Slammed with this new reality, I realized we had made a huge mistake, and so did the school. Montessori had over reached when they accepted Laura, not fully realizing at admission time what they were getting into. Paul and I had been in denial, thinking that a small class size in a creative private school was the answer for Laura. Our quest to give Laura options, a normal life, was misguided, since she was not like other children no matter how much we tried to justify her value.  Idealism does not change the fact that a private school is not required to accept medically complex children and service them properly.  I realized that the school should not have accepted Laura if they were not able or willing to service her.  Paul and I should have known better than to believe it could work. We were used to people falling all over Laura, going above and beyond to give her a good experience when she was in elementary school. This didn't happen just because it was a public school, required to accommodate Laura. I was certain of it. I knew in my heart that this occurred because they truly cared about Laura, and saw her value, not just because they had an obligation by law to educate her. My faith in goodness blinded me to this reality: not everyone was willing to go the extra mile for a child with disabilities.  

As I drove back home from the meeting, my mind was full of confusion and questions.  How could we even think of sending Laura back to that school to finish out the year?  How can we leave the school mid year when the tuition was already paid for by the Braintree Public School System? How can I think of calling the assistant superintendent to tell him what he probably already knew, that children with disabilities are best served in public schools?

I knew I would have to tell Laura something when I got home, but I still didn’t know what to do about the current school year.

“Laura, we’ve decided you can definitely leave Montessori at the end of the school year. But we need more time to figure out what to do about this year. We need to think of what to do next,” I said. 

“What’s to think about? I want to go to South Middle School with my friends. I just can’t go back to Montessori. Please don't make me!” Laura pleaded.

“ Ok, but we need to think this through. I’ll make some calls. It’s not as easy as you think to switch schools mid year. The town probably already paid for the whole year at Montessori. I don’t know if we can get out of it and if you can just switch to South Middle School right now.  You can stay home for a while, but you can’t be out of school for the rest of the year.  Did you know that there is a law that all children have to be in some type of school?”  

“ I don't care about any laws, I hate Montessori, and I will not go back there, ever!” Laura did not back down from her platform.

“Laura, we believe you. We understand how unhappy you are. Try to be patient. We will figure it out. I promise!”  I implored 

When Paul and I woke up the next morning, a note from Laura awaited us on the kitchen table. 

“Dear Parents,

I ran away!  Blame the School!  Call the Police! I can’t go! 

I know I got a lot of time off, but I don’t ever want to go again!

I escaped in the night! Warning: The front door is not locked! Lock it!

You can look for me in the garage, basement, the backyard, or at Carolyn’s! 

If you’ve looked in all those places and still haven't found me, call 911!

Love,

Laura Fazio

Your daughter!

Age:12

In 6th grade

1/25/99”

We found Laura wearing her pajamas and her down jacket, sitting on the front steps of our house holding on to her pink suitcase. We hugged her and cried together.

Laura’s self-esteem may have plummeted but her will remained strong. Laura had been through so much in her life, and deserved to be happy. She deserved to have a choice. It was her life, her destiny after all. There was only one thing left for us to do. Listen to the student!

**To read Part 1 and Part 3 of this Meet the Student series, click on links below: