Even at four, Gabriella hadn’t outgrown her baby carrier. She grew in sporadic bursts, but like most things, her weight remained behind the norm. So did her length, a word that bothered me because she was at an age where parents described their children as forty inches tall. But because she was unable to stand, they measured her lying down and reported her height in length.

Not long after starting at Lakeview School, Lisa brought her to their well-respected wheelchair clinic. This, too, was a reality I had come to gradually. Because our daughter had an angelic face, it wasn’t always obvious in public that she was too old to be sitting in a stroller, at least until she contorted and whined. We absorbed that we would need to move to something more grown up, but the idea of our child in a wheelchair seemed so final.

The director of the wheelchair clinic did a thorough evaluation and confirmed our fears. Gabriella couldn’t sit independently and she lacked the necessary support. As a result, she wasn’t eating well and her posture was worsening. She needed a platform that made it easier for her to swallow and improved her digestion.

They introduced us to the Panda mobility buggy. I had never imagined such a thing existed, a whole system of devices. While out and at school, her buggy would sit on a wheeled base. The buggy and base were detachable, allowing me to stow both pieces in the trunk of our Camry when we took her out. The Panda came with a separate component to snap the buggy into at home. Lakeview’s recommendation also included a solid seat and back customized to fit Gabriella, and a variety of other parts, including supports for her torso and legs and feet. There was even a sun visor because her eyes were photosensitive following her cataract and strabismus surgeries.

My sorrow at the thought of my child forever in a wheelchair turned to hope. This system would help her eat better and would correct her worsening posture. Months of work culminated when Gabriella’s pediatrician wrote the prescription and we submitted to the insurance company.

It took them only two weeks to mail us their denial “because custom chairs and equipment are not a covered benefit”. We were disillusioned.

This equipment had piqued my optimism. If necessary, I told Lisa, we would pay for it ourselves, even though it cost more than $5,000. I was prepared to cut corners to give her the solution she needed.

Then we heard that many insurance companies deny expensive equipment in every case. They knew some families would pony up the cost themselves, while others would give up. Not long before, I had moved to work for an organization well known for ethical behavior. In comparison, this unfeeling approach seemed wrong.

We decided to dispute the rejection.

As always, we were thorough in our appeal. And as usual, Lisa did most of the work. Over time, we encountered these rejections for everything we sought for our daughter’s care, but this was a new experience. We rebuilt a case we thought we had detailed in our original submission.

And then we waited.

In mid-December, six months after their denial, we received a response from our insurance company. The letter started by telling us they upheld their rejection of the sun visor and the basket, calling them convenience items, and not covered benefits. I never knew why they felt the need to make this point first – perhaps to save face? They went on to say they had reversed their decision and authorized coverage for the Panda mobility chair, home underframe, shoe holders, seat insert with lateral trunk supports, tray, headrest, anterior chest support and the labor to install.

It was an early Christmas present from an unlikely Scrooge.

Soon after the New Year, Gabriella was getting around in her purple Panda. She ate better. Her posture still wasn’t great, but she gained reinforced support.

And we learned a valuable lesson that would benefit us in the years to come, and that we would pass on to others: when the insurance company denies your submission, No doesn’t always mean No.

From birth to three, Gabriella received services through the Early Intervention Program. As her third birthday approached, we looked for a preschool appropriate for her needs. We couldn’t have anticipated the challenges ahead.

Our town offered no public program, so we explored other settings. Gabriella’s physical therapist recommended two schools, Lakeview and one other.

Both were impressive, with teams of physical, occupational and speech therapists, and classrooms of kids with differing abilities, but Lakeview wowed us. The principal and staff were welcoming. The technology was incredible, from positioning equipment such as standers and adapted tricycles to a range of augmentative communications devices. It was a cerebral palsy center, but they served many children with complex needs, and some like Gabriella with undiagnosed genetic syndromes. As a bonus, it was only 15 minutes from home, while the other location was three times the distance. Lakeview School offered the opportunity we wanted.

We reached out to our school district to share our excitement.

When we arrived for our meeting, the two women representing the district said they were unfamiliar with either of the places we had visited. Furthermore, they were quite irritated that we had sought out programs before hearing their recommendations, a county-run regional day school and a commission school. We knew nothing about either and agreed to take a step back and visit both; they grudgingly said they would accompany us back to Lakeview.

Before our visits, the Child Study Team conducted psychological, social, learning, and speech and language examinations. This was a formality. Even though we wished otherwise, we had accepted that Gabriella’s delays were severe enough to require placement in a special education program.

First, we went to the regional day school, 45 minutes from home. We quickly became apprehensive. The facility had a strong smell, like geriatric facilities and other institutional settings. The rooms were small and dark, and wheelchairs and other equipment littered the hallways. When we reached the preschool classroom, neither the teachers nor the students smiled, although they did their best to make us comfortable. We left convinced this wasn’t the place for Gabriella, and we hoped the Child Study Team had seen what we had.

At the commission school, the cafeteria was upstairs and the building lacked an elevator, so the staff said Gabriella would have to eat her lunch alone in the classroom. Of the eight other children in the preschool program, seven were ambulatory, and they communicated at a level far beyond our daughter’s. None used adaptive equipment, but they told us she would fit well because her recent cataracts surgeries had left her sight impaired…and they already had a blind student. One child threw a block while we were there. Apparently, this wasn’t unusual. Gabriella had recently had part of her skull removed during her cranial surgery and the idea of flying toys terrified us.

Finally, it was time to return to Lakeview. We loved it as much as we had the prior time, and so did Gabriella. Throughout the visit, she expressed her delight through clicks and other sounds.

As we drove home, we became optimistic. Surely the Child Study Team would recognize Lakeview as not only the most appropriate – but the only appropriate – placement of the three.

We arrived for our meeting with the school district to find a room full of professionals. As Lisa reviewed the many benefits that Lakeview offered and the limitations of the other facilities, I became queasy. They kept glancing at one another, waiting as if placating us. When we finished, they said, “That might be how you feel, but we get to recommend the program.” Their recommendation was the regional day school.

We were floored. They hoped we would agree on the spot, but we told them we needed time to discuss it and left.

Once home, we realized that they had never considered Lakeview. It was too expensive, and we lived in a small town with a modest education budget. But while we understood their budget constraints, we hadn’t chosen our situation, and we wanted to give our child a chance.

When one last appeal didn’t convince them, we retained a well-respected attorney who had written some of the first special education laws in New Jersey. He brought in a behavioral psychologist with a specialty in early education, who conducted a thorough evaluation of Gabriella and visited all three programs. His conclusion mirrored ours, which didn’t surprise us but brought us relief.

When the lawyers were unable to reach an agreement, they set a court date. While we were confident in our team, the stakes were high. We rehearsed what we would say, and paced outside the courtroom. Then our attorney approached us with a broad smile. Just before our appointed time, the district had offered to settle.

Gabriella would attend Lakeview.

At the same time, we learned that issues often arise with out-of-district placements, and we became concerned about going through conflict every time. Less than a year later, we relocated to a town with a large education budget and a reputation for working well with families like ours.

And this soon bore out. Their empathy, so different from our earlier experience, made us feel at home.

Meanwhile Gabriella spent 18 wonderful years at Lakeview, and she continues to take part as an alumna in events like the prom. In fact, this past weekend, we went back for their annual Lunch with Santa. As always, her face lit up the moment we entered the atrium.

She had come home.