On the weekend of the royal wedding, Gabriella got to play the princess not once, but twice.

Last week, her adult day program at Ladacin held their annual spring fling gala. Then on Saturday came the Lakeview School prom, to which she and other alumni are always invited. Our daughter got dressed up and attended both.

Thursday’s gala had a Red Carpet theme, and the Ladacin clients were encouraged to wear black, red and gold. Gabriella wore a black-and-white dress with hot pink highlights, topped with a black sweater. Her black shoes had hot pink accents.

Gabriella was attended by her mom and her nurse. Among the clients, each lady received a corsage (boutonnières for the gentlemen), and hers had a pink carnation to match her outfit.

The staff worked very hard to relocate the program to the hall, transporting equipment, feeding supplies and medicines as needed. They spent all their time ensuring the clients enjoyed themselves, including moving those who were able to do so into standers to allow them to dance upright. Gabriella listened to the music in her wheelchair.

The decorations reflected the theme, featuring a photo booth area with a red carpet and centerpieces with film reels. The art director presented each classroom with a “Laddie award” customized to recognize their own personality.

Our daughter’s classroom, along with staff and some parents, occupied three tables. Guests dined on a variety of entrees, and Gabriella ate pureed penne with vodka sauce. Throughout the afternoon, she observed the activity with interest. It was great to see she has made friends among the clients at the program, with two asking for photographs with her. Her warm smile melted hearts everywhere, including her father’s later on at home.

Two days later, Lisa and I joined her at her eighth Lakeview prom. This has become an event that our daughter looks forward to for weeks in advance, growing excited each time we brought it up.

The prom was held at The Pines Manor, the same site as each of the prior seven, although the school had the event at several other locations following its debut in 1991. As usual, the room was spacious and the wait-staff cheerful and ready to provide whatever help was needed.

Gabriella wore a flowing pink dress with a white sweater and silver slippers. The carnation from the gala was still fresh and matched her attire perfectly. She arrived in her adapted minivan, and was escorted through the rain by her father with a golf umbrella, then into the hall by her mother wearing black-and-white.

The DJ played soft ballads while the guests ate, but soon after increased the tempo. Gabriella danced with her parents and with friends, enjoying being whirled in her chair. At times the music became overwhelming, but her noise-reducing headphones helped to put her at ease.

The buffet included chicken, sausage-and-peppers, and baked ziti, and they pureed a combination to give her a mixture of flavors. Gabriella enjoyed the blend, offset by applesauce. Dessert was a white sheet cake.

The thirteen students soon to graduate from Lakeview gathered before the ice sculpture to be honored with a special serenade. Then, in a new development, the DJ called forth all the alumni. Roughly twenty adults took the floor, and he played “That’s What Friends are For”. (And yes, I got that familiar clutch in my throat…)

Twice over a three-day period, our daughter celebrated with her current and former classmates. While she was not named a duchess, she played princess. It’s a role she’s always loved, and one that has always made her father most proud.

Dear Future Special Education Teacher,

First, I thank you for your courage in embarking on this journey. While special education is not a field that promises riches in material terms, I believe it offers rare rewards for the soul. You’ll work with the most endearing people, and will enrich their lives with your skills and your attention.

Some of you chose this path because you have a sibling or a relative or a friend with disabilities. Many possess a generosity of spirit or a desire to make the world a better place. A number share all of these motivations, among others. But whatever the reason, you will become part of a unique guild.

Our family has met a lot of special education teachers, many of whom have taught our daughter. They’ve had different strengths and instincts, but all encouraged us with their caring and devotion.

Whether in a few months or a few years, when you begin your first job as a special education teacher, please consider the following thoughts, from one parent’s point of view.

You are our child’s learning champion. When we put him or her on the bus to start the day, the destination is your classroom. We know it is our role, above all, to advocate for our child. At the same time, we trust you to design educational experiences geared to their situations. Sometimes, this is primarily academic; in others, more social or even focused on basic living skills. And for most of our children, it involves a combination. Their IEP will provide the goals we’ve agreed together, and you’ll bring those objectives to life. It’s important in doing so that you look for the potential each student brings.

You’re also the leader of a team. In our experience and in the experiences of other parents we’ve spoken with, the special education classroom includes dedicated aides to support the teacher in care and learning. The aides we’ve met are not in this field for the money, but because they want to share their love with these wonderful children. Many of these kids will have access to other amazing professionals as well, nurses and physical and occupational and speech therapists. As in the corporate world I worked in for three decades, some of these people will work for you and others won’t, but you will be an important leader of the “team” that supports each child. And we, the parents, are another key element of that team, looking for you to give direction but knowing our own kids better than anyone else. This can be a challenging situation for a new college graduate, but take heart that it will become second-nature over time. At first, it often best just to listen.

Early in your career, before you’ve earned experience as a teacher, you’ll offer few things as important as your enthusiasm. We’ve known new special education teachers who wow us with the excitement they bring to their classrooms. We have also worked with seasoned veterans who have maintained that passion for teaching after decades in the field. Our children become energized by their teachers’ enthusiasm. We see it each afternoon when they get home.

They say patience is a virtue, and this is true for special education teachers. We know the frustration that comes with not understanding what our kids are trying to communicate, including basic needs such as hunger or pain. We’re also aware these children don’t always advance as quickly as any of us would like. Each of them has a distinctive life-path, and in times of darkness you can shine a light to help them (and our families) along.

As the parent of a beautiful daughter with multiple disabilities, I can only admire and thank you for choosing this direction. Like any career, sometimes it will feel bureaucratic or will leave you weary. But you will make a difference for these singular people, and for their families. And in the end, I believe the experience will transform your life not only for the better, but for the best.

Sincerely,

Paul

This week, I once again have the privilege of participating on a panel of parents and professionals speaking with underclassmen in the Seton Hall special education program. This letter is intended for them, and for the many thousands of young people like them across the nation and around the world.

“Luck!” “Skill!” When we were kids, we used to bicker about the origins of a long swish on the basketball court or a slashing hit with the wiffle ball bat. (“That was luck!” “It was not – it was pure skill!”). I was thinking about that in reflecting on yesterday’s basket raffle at Gabriella’s old school, where there was plenty of both on display.

The basket raffle, also known as a tricky-tray auction, is Lakeview School’s biggest fund raiser. After missing last year, my mom joined us, and Gabriella had a favorite nurse along. We felt fortunate as well because Alexander called during the week to say he would drive out from his waning weeks at college to volunteer.

A lot of expertise goes into preparing for the event. Lisa and her friends on the Parents Association prepare for months in advance, first by collecting gifts and then by bundling the donated items into gift baskets and wrapping them appealingly. Over the last few days, they group hundreds of prizes into five categories by price and lay them out around the corridors. By the time Sunday afternoon arrives, they are weary but proud. They are a great community, a mix of family of current students and moms of alumni like Gabriella, all devoted to the success of the school that offered our children so many wonderful experiences.

Gabriella lit up as she always does when we approached the place she attended for eighteen years, and even more so as we entered the building. I still feel blessed that we got her into Lakeview after the early disputes with our former school district. She had paraded through this entrance every morning and she recognized it at once. Instead of the guard, several volunteers were there to welcome participants and sell ticket packages. Our daughter saw her Mom at the front desk and her smile broadened.

Sometimes I’ve worried this day might be a little confusing for Gabriella. Unlike a typical weekday, when the school is filled with kids and teachers and therapists, there are few children and fewer staff. We still come for other events, too, including Lunch with Santa and the Halloween Party, where the students are plentiful. (In a few weeks, we will again attend the Lakeview Prom, but that’s at a catering hall.) I don’t always give her enough credit, because this was her eleventh basket raffle and she seemed just as well acclimated from the time we got there, displaying her own personal ability.

Gabriella’s nurse took her around to see all the baskets, and this being Lakeview, everyone was extra aware of kids passing through in wheelchairs. Every so often, the organizers made an announcement on the PA system – so loud that our daughter began to sob. Luckily, we had packed her noise-canceling headphones, and she calmed right away. Meanwhile, I purchased my tickets and put them into the buckets for the many items Lisa had identified on her program. The lines were long and meandering, which I have to confess tried my patience, but of course the congestion indicated it would be another lucrative day. Soon it was time for the drawings, the ultimate sign of chance.

Mom won the second basket called and our nurse got one soon after. Alexander had his eye on a Japanese-style tea set including cups without handles, and we all stuffed that bucket – and he claimed that, too. Less than a quarter of the way through reading prizes, our table shared great fortune.

The Parents Association ran the event like clockwork, using a virtuosity they have cultivated over the past decade. Alexander and his fellow runners distributed the gifts, rolling carts with baskets through the halls between the rooms with bidders. I noticed a young boy pushing a cart and it reminded me of the first few times, when our son and his best friend were among the youngest volunteers. Now he was one of only a couple old enough to distribute the few prizes containing wine.

Our primary donation was a Roomba and I put several tickets into the bucket. Even though we gave that prize, I would feel no shame if we won it. But it was not to be. As happens most years, Lisa and I didn’t happen to win a basket ourselves.

Most importantly, the outcome was another productive day. We had often heard about the administration’s vision of building an aquatic center for its kids. The luck and skill of ten prior basket raffles, along with other fund raisers, enabled them to open the first school-based hydrotherapy pool in New Jersey last fall. We had the pleasure to see the facility in December. It allows a student in a specialized wheelchair to roll into place before lowering the floor and submerging child-and-chair for treatment. It was amazing. We felt a lot of pride that afternoon.

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.

I’ve often said that most of the friends we’ve made and the good people we’ve met over the past 22 years have come, in one way or another, from Gabriella. Our community orbits around her.

I chose TIAA over another prospective employer based on her needs, because it was family-friendly and supportive when few organizations were focused on diversity. We selected our town because the school district was recognized for working well with families like ours; that reputation proved to be true. And Gabriella spent eighteen wonderful years at Lakeview School, a place that yielded great friendships. So many amazing people have come into our lives in the past two decades through work, home and school.

But today I’m focusing on a subset that has been, and remains, a vital segment of our care network: the community of other families of children with special needs.

Soon after Gabriella started at Lakeview, Lisa joined the Parents Association. She found camaraderie and understanding among others (mostly moms) undergoing similar challenges. Volunteering for events like Breakfast with Santa and the basket raffle gave her new purpose. Her engagement made her feel less alone as we faced our own complex situation.

I remember our first Pumpkin Carving. Our son Alexander had been to Lakeview often enough that he was well-known as a toddler among teachers and staff. Still, I saw his shock at a knot of so many kids sitting in wheelchairs like his sister, being fed like his sister, experiencing complex challenges like his sister. I had felt no less overwhelmed in my initial visit to school. But we found something else, too. There were dozens of families like ours, comprised of moms, dads and siblings. There was comfort in that association.

Even though Gabriella is now an alumna, we still attend the holidays party and the prom. For a dozen years, Alexander volunteered alongside Lisa at the basket raffle and the golf outing. And Lisa remains a member of the Parents Association, just as she’s joined a parallel organization at Gabriella’s adult day program.

I always admired her involvement with the school, while recognizing the benefits she got from interacting with these other parents. A few years ago, I helped establish such a group in my workplace.

TIAA offers employee resource groups, or ERGs, allowing colleagues to celebrate commonalities and differences in race or gender or sexual orientation. While we had ERGs focused on women, African Americans and LGBT, for example, we had not established one for individuals with disabilities and their caregivers. In part inspired by Lisa’s experience at Lakeview, I got involved with the core team who started our Diverse Abilities ERG.

This provided me with an amazing opportunity to meet caregivers of those with multiple disabilities, hearing impairments, food allergies, and many other challenges. I witnessed the bravery of people who face (often invisible) disabilities themselves. I believe our group brought awareness and understanding to the organization, and I benefited from an environment like Lisa had enjoyed with the Lakeview Parents Association.

Hearing the stories of other caregivers brought a belonging, the courage that comes from knowing that others have overcome something we face, and empathy for those leading such complex lives. Interactions with colleagues suffering from epilepsy and visual impairments helped me better appreciate some of my daughter’s special needs. Then there are extraordinary friends who joined Diverse Abilities because they dedicate themselves through their church or community to helping people with different challenges.

Now I encourage caregivers (and those with disabilities) to seek opportunities to find others with parallel experiences. Organizations exist at schools, at work and close to home. And they don’t have to be formal; the key is in the interaction.

I recognize that not everyone is able to spare the time or energy to become involved today, but would urge them to keep the idea front of mind for when their schedule evolves. And in the meantime, I’ve learned since I started blogging myself that there are many incredible blogs on-line that offer a sense of inclusion, if only by sharing stories and wisdom in which we can see ourselves.