Back to the Drawing Board, Meet the Student, Part 3

The Meet Laura Fazio Series

Back to the Drawing Board: Meet the Student, Part 3

(Please refer to my previous posts for context: Read: Meet the Student, Part 1 and Part 2)

After practicing opening statements, I still wasn’t sure of what I would say when I finally got up the courage to call Mike Molongoski, Assistant Superintendent of Braintree Public Schools. My heart was pounding. I took a few deep breaths when the secretary put me on hold to transfer my call. I braced myself for what I needed to do; admit I was wrong, and fix my mistake.

“Hello Mrs. Fazio,” he greeted me warmly.

“Hello Mr. Molongoski,” I said.

“How is Laura doing at the Montessori school?” He asked.

“This is why I am calling you. It’s not working out. Laura is unhappy there.” I said.

“ I’m sorry to hear this. What happened? ” he asked. 

“Laura can’t keep up with the work. The focus of the school is student self-sufficiency. She’s not able to be independent. Laura still needs a lot of guidance, and is not getting the help she needs. Her self esteem is plummeting and she feels like she doesn’t belong there.” I stated.

“I’m sad to hear this, especially that Laura is so unhappy,” he said.

“Laura is refusing to go back to school. So I am calling you today, with my tail between my legs, since I pushed so hard for Laura to go to Montessori, and for the Braintree School system to pay the tuition.” I said.

“Don’t say another word about that. Let’s just move on. How can I help?” he asked.

“Laura wants to go to South now.  She doesn’t want to wait till the following school year. Is it possible for her to switch schools midyear?” I asked.

“Of course. We will be happy to welcome Laura back,” he said with conviction.

“ Thank you.” I said, breathing a sigh of relief. “I should have known this would happen. I was in denial.”

  “No worries. Let me think for a minute. I’ll need a few weeks to make the arrangements, to gather up a team, and to figure out how we can best accommodate Laura, with your’s and your husbands input, of course,” Mr. Molongoski said. 

“Thank you so much. But what about the tuition? Wasn’t the year already paid for?”

I asked.

“You don’t need to worry about this. I will make the necessary calls. We’ll get a refund. Are you available to meet with the team in the coming weeks?” He asked.

“Absolutely! We will make ourselves available. I am just so grateful, “ I said

“ I am looking at the calendar now to get a timeline.  Laura could potentially come to South Middle School by mid February, right before school vacation week, but I can’t promise an exact date yet.  Let me gather the team and we can go from there. I am going to ask Doreen, our social worker, to help with the transition. She’ll give you a call in a few days,” he said.

“ Can I ask you one more thing?” I asked.

"Of course!” He answered. 

“Who should tell Montessori? My last meeting didn’t go so well. I’m not sure what to say to them, ” I said with trepidation.
  “I’ll take care of it. We will let the school know that Laura isn’t coming back. Sit tight. It will all work out. Just take care of your precious daughter,” he said.

“Laura will be so relieved, thrilled actually, to be going to South, and to be back with her friends. You are amazing,” I declared.

“Laura and your family are the amazing ones, with all you have to deal with. I want you to relax now.  Everything will work out. That I can promise.  Now, get off the phone, and go enjoy your daughter. Give Laura and your husband my regards,”  he said while wrapping things up.

“Thank you! I will,”  I ended the phone call feeling so much better than I did at the start. After I hung up, I was moved to tears by the kindness and humanity shown to me by Mr. Molongoski. 

Laura was elated when I told her the news. She made a shrill excited scream, jumped up, then down to the kitchen floor to pet her cat Ping to tell him that she won!  Within minutes she was asking me if she could call Lauren and Allie, her friends who went to South.  We suddenly realized they were still in school and she would have to wait. We laughed about this and hugged each other.  We called her Dad at work to tell him the good news. Laura's feelings of sadness immediately gave way to elation. Laura began celebrating her victory, Laura couldn’t be happier.  It was not everyday that victory came this quickly to Laura and I rarely experienced such a fast resolution to a problem in all my years of advocating.  

Laura spent the day doing what she loved to do, what writers do when they have strong feelings to process. Laura wrote about her Montessori struggles in her diary, and typed up declarations of victory on the computer.

WOW  Weeeeeee!

If you want something, you’ll get it! Says Laura Fazio. 

She wanted to leave Montessori and go to South, and she got to.

I shared in Laura’s happiness, but not in her relief.  While Laura celebrated, I quickly became stressed out about the logistics, and practical issues.  Thoughts and questions filled my mind. Laura will be out of school for two weeks. Where will she go each day? Will Laura be happy at South? Will Laura be safe at South? How can I communicate Laura’s needs effectively this time around?  

My difficulties were not behind me. As soon as the emotional weight of the school decision was lifted, a new heaviness settled into my body. I felt the muscles in my neck and back tighten as new worries entered my mind and created a state of anticipatory stress. I was on high alert, something I was all too familiar with. This period of uncertainty would be sure to trigger the “Fight or Flight Response.” I had recently learned that in times of stress, the body releases hormones to prepare for fight, to stay and deal with the threat, or for flight, to escape into safety.  I looked across the room and saw Laura singing along to music, enjoying her freedom. I noticed how we dealt differently with stress. Laura was escaping into her world of enjoyment, instead of dwelling. I went right into the throes of problem solving. I was glad to see my daughter happy again. Laura didn’t need to know how hard this time period would be for me.

I decided to learn from Laura and let go of my stress for the time being. I decided to live in the moment and get on the cloud of joy that Laura was riding, to bask in the lightness of success with her. We spent the day relaxing together. When Laura called her friends to tell them the good news, I called my friends and family to tell them too. Later, when I cooked dinner,  Laura and I listened to music together. When Paul came home from work, we ate dinner, cuddled on the living room couch together and laughed while we watched episodes of Seinfeld, Laura’s favorite television show.

The next day was back to reality for me. The first order of business was to decide where Laura would spend her days, while she was out of school. We had limited options. My family lived out of state in Connecticut. Paul’s parents were local, but older and beyond child caring age.  We decided to share Laura duty and take turns bringing her to work. The plan was for Laura to go to work with her father a couple of days a week since Paul owned a small business with his brother, Tom whose wife Patsy happened to be the secretary. Laura would also get to be with her Uncle and Aunt.  My principal gave me permission to bring Laura to work one day a week, while I taught art to elementary students. Laura would stay home with me, on my days off, since I worked part time. I was glad that this was settled. The hardest part was yet to come. More work lay ahead for me. It would be “back to the drawing board,” back to advocating for Laura at another new school. This time, I was determined to get it right.

Laura’s days and nights were pretty much opposite to mine. When Laura went to work with Paul, she wrote at her Dad’s computer and ate family style lunches. When Laura came to work with me, she drew pictures in the art room. Phyllis, a friend and special education teacher, took Laura to her office to let her play word games on her computer during free blocks, which she loved. On our days off together, Laura stayed in her pajamas all day and enjoyed the free time while I prepped art lessons for nearly 300 students a week.  During the evenings, I cooked dinner and we all ate together. Afterwards, Laura went upstairs with her father to give me the time and space to read Laura’s documents and plan for South Middle School. 

Laura’s paperwork weighed in at about fifty pages; medical letters, neuropsychology and  vision therapy reports, and IEP, OT, PT evaluations and recommendations.  They were the exact same reports that were sent to Montessori and now to South Middle School. I strained to read the paperwork through the eyes of those who had never met Laura. I noted how scary and overwhelming it all was. Even for me, the information was hard to read, hard to bear. It was emotionally difficult for me to read report after report detailing the harsh realities of Laura’s heart condition and stroke induced disabilities. It didn’t seem possible that this was Laura, the quirky, creative, pre-teen who was upstairs right now, probably bargaining with her father for just one more hour before bedtime.  

The documents felt surreal. The ophthalmology and vision therapy reports were especially upsetting, with the detailed pictorial graphs showing sizable blind spots in each eye. The cardiologist’s letter was even more painful to read, with warnings of potential arrhythmias, declining oxygen saturation levels, the need for supplemental oxygen, and how just walking down a hallway or climbing school stairs could put her at risk for being bluer, dizzy, exhausted and more short of breath. The neurology report warned of how her blood thinner dependency (to prevent more strokes) could cause a hematoma and/or a brain bleed, if Laura was bumped into by a student rushing by and accidentally pushed down onto a hard surface in the hallway or outside on the sidewalk.  

Even though I lived with this knowledge everyday, reading the reports again and seeing the words stare up at me from each page, made everything seem more real, more harsh. Ordinarily, the reports would have been read one at a time, when they were mailed out to us at different time intervals. Reading each report, one after another was traumatizing, and hit me hard. I thought, this can’t be Laura, even though I knew perfectly well that it was. My eyes welled up with tears as I reflected on what Laura endured every day.

Paul, Laura and I managed to block out these realities on a daily basis, while being acutely aware of them at the same time. I am not sure if it was a conscious decision, or if it came from our unconscious minds. What I do know for sure, is that this was the only way any of us could have gotten out of bed each morning, to face the world with hope and optimism. If you asked us how we did it, we would have told you that we felt like the luckiest family in the world. We truly believed this. We loved each other deeply and we were loved by others. We were proud of our daughter and grateful to be her parents. She was our special gift. We basked in our blessings, tried to see beyond our hardships, and looked directly into Laura’s eyes to really see her; the delightful, wonderful, creative, and sometimes rebellious person that she was. 

Paul and I were so finely tuned into Laura’s medical and safety needs, that we didn’t have to think about it very much. We just knew in our cells what to do if anything went wrong, and instinctively took action.  Paul and I didn’t consciously think about the scary stuff unless we had to, and it seemed like Laura lived this way too. Our fears came out at night in dreams and nightmares, and sat below the surface during the day, creating undercurrents of anxiety. Laura was the one who showed us how to live, by keeping our gaze outwards toward the world while hoping and waiting for the next interesting or fun experience to happen.

I was on a new mission. I had an idea on how to proceed. I needed to communicate the dangers, needs and assets of Laura Fazio to those who didn’t yet know her. I made a plan. I would create my own “guide to Laura,” a scaled down version of the lengthy documents, with  only the information pertinent to a middle school experience.  I hoped to distribute one clear and concise handout to everyone on the  team. The health and safety concerns and the accommodations would be interspersed into her anticipated school schedule. I even planned to add what Laura would need for unexpected emergencies and sudden fire drills. The intensity would be somewhat softened, but the cautionary alerts would still stand out. This would be no small task. 

Doreen, the town’s special education social worker, gave me a call late one afternoon, to  introduce herself and give me the date of the team meeting, and to ask if I needed any help with the transition. I told her that I'm presently immersed in working on a guide to Laura document which would summarize her needs, and that I was driven to rethink everything since it didn't work out at Montessori. I said that the project was time consuming and exhausting, but necessary, since I really wanted it to work out better for Laura this time around. Doreen said that she would love to come over and help. 

Doreen arrived at our home that night. Paul and Laura were out, since they had gone to Paul’s job together that day. I was home alone working on the Laura guide. There were white poster boards and typed up notes spread out all over the living room. Doreen came to the door and we greeted each other. She had a palpable exuberance that I was unaccustomed to. Doreen entered the foyer with vibrance and a big smile, shook my hand, then quickly looked past me toward the living room, where she spotted the poster boards. I told her to come on in.  Doreen stood and scanned the room, then she moved through the room in a whirlwind, leaving a wave of energy in her wake. I was standing at the entrance of the living room watching her dart from chair to chair, from couch to coffee table, and then kneel down on the rug to observe a few more poster boards displays.  Each poster board was entitled with a category in bold black marker with a pile of  cut up text strips scattered nearby, waiting to be put on the board in some sort of order. Doreen finished going to every station, stood back up, and with a burst she threw her hands up into the air in exaltation, as if to celebrate.

  “Susan, Wow! I have never seen anything like this before!” Doreen exclaimed. 

Feeling a bit off guard, not knowing her well enough to know what she meant, I wondered if I appeared to be an over the top crazy person.  I attempted to justify the situation.

“Laura was misunderstood at her previous school. Actually, it was a disaster, and I don’t want to make the same mistakes as I did last time. I assumed that because they had the professional letters and reports, they would have understood them and implemented the adaptations, that somehow everything would have magically fallen into place. Obviously that didn’t happen.”

“I am really sorry that it all turned out that way for Laura and for your family. Mike Molongoski told me about it. I think that what you're doing is great!”  Doreen said with conviction.

“I realized, after re-reading the reports, that this stuff can be very overwhelming to new people who don’t know Laura.  I’m trying something new this time; extracting information from each document, and then breaking it down to fit into an actual school day. I hope it will be easier for the team to understand,” I explained. 

“That makes perfect sense. I can see you have them labeled with categories,”  Doreen said while looking at one of the boards.

“It helped that Mr. Molongowski called to tell me what Laura’s schedule would be like, that she will have a paraprofessional, and her home room will be the resource room with the special education teacher.  He explained to me that Laura will have a wheelchair and that the school nurse will coordinate the medical stuff and be involved with Laura day to day. Since the meeting is next week, I am working on this every night until it's done,” I said.

“ All right then!  I can see that this is a ton of work. I am here to help. Put me to work!” Doreen said as she took off her coat.

She laughed as she rolled up her sleeves in a way that indicated she would be doing  heavy labor, which cut the intensity of the moment and lightened up the mood in the room. Doreen was like a breath of fresh air, so upbeat and willing to get on this slow moving train with me. Someone else might have seen me as obsessive, or thought that I was an overprotective mother.  Doreen made me feel like I was doing exactly what I was supposed to be doing.  

“I wish all my families did this.  It will surely make my job easier.  I also think it will  get across to the team, what you want them to know about Laura.  I have an idea. Do you want to come work with me in the special education department?” Doreen said jokingly while paying me a compliment. 

“I think I’m good. As you can see, I’ve got my hands full.  One student to advocate for is enough for me,” I joked back and we chuckled together.
“Susan, with all seriousness, this is really great! I think it will help. I am always in such awe of the parents I serve, especially the ones whose children have medical needs. I can’t imagine what you all go through. My job is to make this transition for Laura go as smoothly as possible. Mike. Molongowski gave me strict orders to take care of you!” she said.

  Suddenly, I felt that it wasn't just me against the world anymore. Doreen made me feel like I was part of a group. I was always doing this kind of stuff alone. Paul had other roles in Laura’s life.  The role of advocacy mainly fell upon me, whether it was self-appointed or not. I had been lucky to have the support of a few close friends and family members who took the time to listen to our struggles, and my ideas, and who gave me helpful advice when I asked for it. Even though I had a regular support system, it felt good to have someone inside of the system willing to come to my house and lend a hand. Doreen was a welcome ally. She jumped in that day and made the project feel like it could actually be fun. I began to feel my body relax as my mood lightened up enough to enjoy the process.

“Thank you! You’re a lifesaver.” I said, instantly feeling a bond of trust. Doreen seemed to really get me and get what I was trying to do. 

Paul called to tell me that he and Laura were eating dinner at his parents house, which gave us more time to work on the project. Doreen ended up staying for two hours that night; reading parts of the medical letters and reports, pointing out things that I overlooked, helping me with organizing my notes, switching things around, deleting repetitions, and tweaking the category titles. She was familiar with adaptations in a middle school setting, so she was able to provide valuable tips on where accommodations were mostly needed.

Doreen and I agreed that if she could read and understand the guide clearly without having met Laura, then it would be understandable to the teachers and staff. By the end of the night, we both decided it was close to being finished. I still thought it was too lengthy. I wanted to get the guide down to three pages, even though being concise was not my strongest point. Doreen agreed that shorter is always better, though hard to write, easier to read. She put on her coat and walked toward the front door, until she stopped in her tracks and turned to face me. 

“Now, there is one more important thing left to do,” Doreen claimed.

“What’s that?” I asked, feeling dread at the prospect of more work. 

Her tone suddenly shifted away from serious. She chuckled a bit and came out with it.

“ I have to meet your wonderful daughter and husband. That's all!”

When we said our goodbyes, I had a feeling of satisfaction that I had not felt in a while. Doreen helped me to see that this was possible. I believed that all would be well in our world again.  

After Doreen left, I gathered the poster boards and set them into a pile, wedged them between the wall and the computer desk, retired the project for the night and awaited the return of Paul and Laura. When they arrived home, the living room was no longer an office, and once again a home.  There were no visible signs of what occurred in our house that night; my struggles from this agonizing work, the presence of my special guest, or the rewards of our success. I welcomed our cheerful daughter into my arms for a hug and held her tight. Paul was looking at me as if to indicate he was wondering how it went. Too tired to talk about it, I asked him if he could wait till the following night to read it, and give me his opinion, after one more round of editing. 

The guide to Laura, document was officially born.  I gave the document a hard to ignore title, subtext and a short summary.

IMPORTANT INFORMATION FOR ALL INVOLVED WITH LAURA FAZIO

Laura has a heart condition. Please do not let her health concerns interfere with a productive learning experience. 

Laura will receive the services of a full time paraprofessional to assist in addressing her medical, physical and educational needs. The para will receive training and instruction from both the school nurse and Laura’s special education resource teacher. Initially, the para will be with Laura at all times and present during Laura’s lunchtime. This will be monitored to determine if Laura   requires this level of supervision. 

The rest of the document consisted of bulleted information under each of the categories: Health and Safety Concerns, Cardiac Symptoms and Emergency Procedures, Academic and Classroom Accommodations, and Special Adaptations in Laura’s schedule.

The document wasn't perfect, but it was straightforward and easy to follow.  I called Doreen to tell her the guide was finished. She came to the house to meet Laura and Paul, and to pick up the handout so that she could make copies for each member of the team before the meeting.  

Later, Doreen called to fill us in on the plan. We would be asked to make two visits to South. On the first visit, Laura and I would meet with the school nurse, the paraprofessional, and then attend the team meeting. Laura would stay with the para while Doreen, Joyce (school nurse) and I attended the meeting. Afterwards, Laura would participate in a mobility evaluation, requested by the school system. With our permission, a physical therapist would plan to take Laura’s oxygen saturation levels (O2 sats) with a finger pulse oximeter, while she walked in the hallway, ascended and descended stairs, walked within a classroom, walked to and from the ladies room, and the walked to and from our car. Paul and I already knew what the findings would be; that Laura’s O2 sat readings would show significant decreases in oxygen levels, that Laura would tire easily and need to stop and rest a lot,  her lips would become visibly bluer, and that she would become needlessly exhausted.  Even though the cardiologist’s letter clearly stated all of this, we assumed that the administration must have needed observable proof, in order to justify specific services and accommodations.

On the second visit, Laura would spend a practice day at South Middle School, following along with her friend, Lauren’s schedule. Laura was beyond thrilled when I told her. She immediately asked if she could invite Lauren for a sleepover. They spent their time listening to music, discussing the Montessori fallout, watching movies while eating popcorn, and talking about how they would soon be together at the same school. I fully enjoyed seeing Laura and her friend so relaxed and happy. I knew that I would not be able to calm down until Laura successfully transitioned into her new school.

Link for Information on Fight-or-Flight Response: https://www.verywellmind.com/what-is-the-fight-or-flight-response-2795194