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.

At the same time that medical emergencies and setbacks kept our family busy during Gabriella’s first years, we (and especially Lisa) spent many hours each week on her development, through both individual services and the Early Intervention Program.

As I’ve written in several posts, Gabriella faced numerous challenges in her first years. These ranged from severe dehydration soon after we came home from the hospital to the growth of a tumor on her skull. We often felt drained and overwhelmed.

We also faced major changes to our lifestyle. Lisa had taken a leave from her position at the medical school, making me the sole breadwinner while rumors of an impending acquisition of my employer were rampant. Then the rumors proved true, and I joined the team putting our U.S. subsidiary up for sale, effectively working to eliminate my own job.

As health issues plagued our daughter, her development depended on a regimen designed to strengthen her flaccid muscles and bolster her thin bones, feed her mind and stimulate her instincts. Lisa spent many days bringing her around to services. I accompanied them when my work schedule allowed.

At the hospital, Gabriella received physical and occupational therapy. While the therapists rotated, we became close to one PT and one OT. These women provided solace and advice about treatments and exercises. They also counseled us on which schools would be most appropriate for our daughter to attend. One suggested Lakeview School, where Gabriella spent many wonderful years.

After the period of therapy covered by our insurance lapsed, we hired both to come once a week to our home, to continue the progress we saw Gabriella making. We learned to temper our expectations, forced to watch our child struggle with things that most infants know by instinct. Early on, our OT told us, “You’re not going to like this in a few years, but it’s important we get her to learn to put her hand in her mouth.” She taught our daughter fine motor skills, including reaching and grabbing, and tracking with her eyes.

Gabriella was partially blind after having cataracts excised from both eyes and intraocular lenses implanted. One regular visitor was a lady from the New Jersey Commission for the Blind. She gave us with a black box filled with toys of different textures and sound effects.

The physical therapist worked with her on range-of-motion. I have a fond memory of Gabriella on her back, laboring to lift her leg and then, after one teetering moment, rolling over with a plop. Unfortunately, she lost this ability after a later surgery.

One final cornerstone of Gabriella’s development was the Early Intervention Program. Lisa brought her for an hour a week with a special education teacher, a nurse, a speech therapist and an occupational therapist. She also got an hour of physical therapy. They introduced her to adaptive equipment such as Tadpole tumble forms, plastic wedges filled with soft foam used to support her seating and positioning. She pressed switch-plates to activate toys and stuffed animals. That there were so many types of apparatus and devices energized me, but also underscored how many kids there were out there with challenges like Gabriella’s.

Early Intervention provided other benefits. While the teacher worked with the three or four children, their parents gathered for a support group. We had met other families in surgical waiting rooms, but this seemed a more normal setting. As I wrote about recently, such communities are vital.

Much of the time, our daughter’s development encouraged us. We saw both effort and progress, and we appreciated the network of professionals and parents that helped us to accept the unusual dynamics of our new life. We tried not to dwell on the fact that our son achieved many of the same milestones months or years earlier.

And we looked ahead to the next big hurdle: getting Gabriella into a school where she could continue to develop her potential and live a life uniquely her own.