Approaching a special needs family, or approaching a person with disabilities directly, can often be awkward or intimidating. People have a lot of well-meaning questions, but they’re unsure whether, or how, to ask. To get some other perspectives on this etiquette issue, both on what to do and what not to do, I’ve spoken with friends in situations like ours.

People ask questions for lots of reasons. Some want to understand or satisfy their curiosity. Others are reinforcing a relationship. Some want to be helpful, to find a solution. Most are well-meaning.

From the beginning, we had lots of questions, too. There was so much uncertainty, we weren’t sure where to begin. At first, we wanted to know that Gabriella would survive, our fears exacerbated when we rushed her to the hospital with severe dehydration. As those early weeks receded, we addressed other emergencies, other threats. We tried to comprehend the abnormalities, the changes she underwent out of nowhere. What had caused them? Once treated, would they come back? Had they left lasting damage? Family and friends and those we confided in requested updates as well. Did you get the test result? How did the procedure go? (Sometimes questions just show how little people really understand what’s going on, as friends shared: when their child with cerebral palsy had hip surgery, relatives asked whether the child would now be able to walk.) While answering these questions can be draining, our loved ones were offering comfort and we appreciated their support.

Those early frights kept us on edge. We felt our circle of friends constrict a bit, in part because it was wearing to bring so many along, and we avoided encounters with those we hadn’t seen in a long time, for they would have the most questions.

Our daughter fought through each challenge. She grew stronger, and so did our resolve. But there was plenty of quiet time between the scares, and there was no shortage of questions then either. Often from strangers.

When we bundled Gabriella and took her to a department store, she would sometimes contort herself in the stroller, turning to the right and arching her head back until her eyes faced behind her.

People would stop before the carriage, and invariably they would ask, “How old is she?” Sometimes our daughter would stop twisting and smile; at other times she would keep complaining. We knew they were trying not to be intrusive, but the question still felt like a less obvious way of asking, “Is there something wrong with her?”

We would mumble “Six months” or “Eight months” or “A year.” Sometimes we felt obligated to add “She has some delays,” even if we hadn’t yet conquered the shame that accompanied that phrase.

Lisa and I often discussed it afterward. She thought they were trying to find something to say, to be kind. She compared it to “How many months?” when she was pregnant.

In most if not all cases, I believe the questions are well-meant. And I do think approaching us is far better than standing off and staring. Gabriella loves attention, and we love to find ways to include her. So what’s the best way for such an approach? (I will add that, while these thoughts reflect some perspectives of others, they are ultimately my own opinions.)

I’ll share some thoughts on what to do (and then some don’ts).

First, observe. If Gabriella is expressing discomfort or impatience, we’re more sensitive as well and it’s not the ideal time to come over. It’s better to wait until she seems happy or calm.

Second, approach in a respectful way. Smile. Say “Hi.” Ask her name and introduce yourself to her as well. (This is important. A lot of times people come and talk about Gabriella rather than to her.)

Third, ask a question that could apply to any child, not just one with disabilities. Would you tell me about Gabriella? How is Gabriella’s day going? What’s Gabriella’s story?

Finally, there are often opportunities to do something nice. Holding a door for a parent with a child in a wheelchair is especially appreciated.

Now a few things not to do.

First, please don’t stare. I hear stories about people who can’t tear their eyes away to the point that they trip over a curb or walk into a door.

Second, don’t touch her wheelchair. Many people with chairs view them as an extension of their body.

Also, it’s better not to try to diagnose her with questions like “Does she have CP?” (See above for some preferable things to ask.)

Finally, please don’t try to solve our problems before getting to know us and her and the specifics of her situation. It’s not helpful to suggest that she should sit up straighter, or to recommend ways to better adapt her chair when we’ve been taking her to wheelchair clinics and meeting with experts for years.

A caveat: children will walk up and ask direct questions like “What’s wrong with her?” That’s okay. If your kid does that, please don’t whisk him or her away and apologize. Instead, role-model by introducing yourself to our child and asking one of the questions above. We’ll all feel less embarrassed and more prepared for the next encounter.

Most importantly, don’t shy away. When an approach goes well, it can brighten both our day and yours.

What about you? Have you been on either side of a good approach, or one that didn’t go so well? Can you suggest other do’s or don’ts?

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.

I’m just going to put it out there. Living with a child with multiple disabilities, I don’t believe there’s a six-step grieving process, that you go through anger, denial, etc., and at the end comes acceptance.

For us, and for families like ours, things happen differently. Before I explain, a little context…

On our honeymoon, I snorkeled at the Baths of Virgin Gorda, diving and swimming around prehistoric boulders the size of small buildings. For a while I was down there alone, and I plunged along one of these great dinosaur eggs, rappelling down its smooth face toward the underside, into a scatter of blue and yellow fish. For a brief shimmer, I couldn’t right myself, scrabbling my hands against the rockface. Then I seized my calm and pushed off the boulder and let the watery force lift me to the surface. It happened so quickly, I knew little fear. Only the sensation of being too deep, too long.

I had that same feeling beginning the day Gabriella was born. Not only did we face the changes all couples confront with their first child, but we encountered new routines unique to our daughter. To secure her dislocated hips, we triple-diapered her. We learned to soak off the tiny casts that the orthopedist put on the vertical talus on one foot and her clubfoot on the other. And before she was two weeks old, her weight fell below five pounds and we rushed her to the ICU.

In the following months, cataracts appeared and she underwent four surgeries, one to extract the blight from each eye, and two more to implant intraocular lenses. The surgeon broke and reset the bones to correct the clubfoot. A bump emerged on her head and swelled, leading to a frozen section that indicated that the tumor the neurosurgeons had removed was a malignant sarcoma. And we already had a diagnosis that not only threatened our daughter with mental delays and a shortened lifespan, but loomed over future pregnancies as well.

You hear about the six stages of grief: shock, denial, anger, bargaining, depression, and finally acceptance. And we certainly did our tour of the stages. Exhausted, overwhelmed, unable to focus on anything else, we sleepwalked through those first weeks in the hospital and out.

Denial followed soon after. I became unwilling to accept what was happening, and more so that this would impact the rest of our lives, but it was and it would.

Anger consumed me, and for a while I blamed God. I didn’t understand why this had happened to us, to this tiny faultless child. And that led to bargaining.

We were depressed a lot in the early years. Despite my natural optimism, it took a while, but we got to acceptance, too. So why then do I reject the traditional notion of the six stages?

Because the grieving process has not been a onetime thing, the stages coming rapid-fire in their own sequence.

Every time we confronted something new, a fresh process started. I felt shock in the beginning, shock again when our daughter became dehydrated, shock that she had cataracts, shock at the diagnosis and again with the frozen section. While I was denying Opitz trigonocephaly, I was in shock over the cloudy spots in her eyes. While I bargained with God for a pathology report that refuted the sarcoma, I accepted the forthcoming strabismus surgery.

So when I say I don’t believe families with children with disabilities have a grieving process, I think instead that there’s a series of six-step processes, one within the other like Russian nesting dolls.

In a way, knowing that brought us wisdom and comfort. The emotions were different each time, but we knew we would make it through the emerging process as we had the prior round. But that didn’t mean we dreaded any less the pain of the one in our sights.

In the end, life with Gabriella will always be different. We accept that, even if we follow a circuitous path to get there. Again.

A couple months ago, I put forth five lessons about leadership and life that I’ve taken away from over two decades as Gabriella’s dad. As I noted then, my experience at a mission-based organization and my passion for leadership led me to consider how parenting a child with multiple disabilities made me a better leader.

Today I offer five more lessons:

1. Cherish Routines: Over the past 22 years, Gabriella and I have shared a bedtime ritual that we both look forward to, including reading stories, saying prayers and whistling songs. It can be depressing that the specific stories or songs have gone unchanged since early childhood, but the familiarity brings comfort to both of us. We’ve also had to adapt; for example, when she was younger I snuggled her in a rocking-chair, but today at ninety pounds she lies in her bed and I hold her hand.

The very idea of business routines, from staff meetings to planning and budgeting, raises the specter of tedium and bureaucracy, but management experts see many benefits. They create structure and build good habits. Routines also create opportunities to bring teams together, to engender fresh thinking, and even to have fun. Sometimes this results from the mindset the leader evinces, sometimes from making an unexpected change. Once I transformed a meeting about annuities by incorporating Lollapalooza-style music. Soon that got tired, too, and we had to mix things up again.

2. Keep Moving Forward: It’s natural to get paralyzed by bad news. So many setbacks have stopped us cold over the years, from the blurring of Gabriella’s pupils to the growing bump on her skull, but she depends on us to keep advancing every single day. We contribute in different ways: Lisa is pragmatic and action-oriented on medical treatments, while I remain optimistic and help push us through the endless waits and gloomy outlooks. Gabriella models this theme herself, as she loves to be in continual motion.

The day-to-day of the work-world offers many obstacles to progress. Lost clients, budget overages, unexpected twists in a career – each can slow us down, but they don’t have to make us stop. It’s important to understand why setbacks occur, but the post-audit should be swift, with accountability but minimal finger-pointing. Then we move ahead once more, with an action orientation and a sense of optimism.

3. Err on the Side of Patience: As my family would readily admit, I’ve never been a patient person. But life with a child like Gabriella can require great endurance. We’re forever waiting for test results, waiting for dismissal from the hospital, waiting for clarity about what’s going on. The famous prayer asks for the serenity to accept those things we cannot change, and it’s those unchangeable things that require the most patience.

It’s easy to be impulsive at work, wanting to respond to events or people. The demand for urgency is perennially high, but acting without thinking, or more so without listening, can cause real damage. I’ve attempted to balance acting swiftly and bringing a thought process appropriate to the situation. My rule of thumb is: the bigger and more complex the problem, the more brainpower, the more different perspectives, and often the more time, are necessary. While that sounds obvious, it’s not always the way events unfold.

4. Empathy is Felt more than Thought: Not long ago, I posted about what it would be like to be Gabriella. While the challenges I described were familiar because they happen regularly, I had never considered them from her perspective. Writing that entry forced me to think about her feelings, but it also offered insights about her very different, much more innocent, way of responding to each.

We’ve all heard that we should seek to understand the perspectives of other people in the workplace by “putting ourselves in their shoes”. I always thought it sounded simple enough: consider the situations they face and picture myself facing the same challenges. I realize now how much harder it is to measure how they might have felt, and why their responses might differ from my own.

5. Sometimes it’s Better to Receive: People are drawn to Gabriella, and they exhibit this attraction in different ways, with affection and smiles, and with gifts, as happened one evening on the boardwalk. A small girl’s generosity had a profound impact on our family.

As I progressed in my career, I found that colleagues and friends increasingly looked to me more for advice, whether on technical matters or about their careers. This was a great compliment, and I set aside time for coaching. To my own detriment, I was not so quick to seek guidance from others. (Who knows? Maybe I thought I knew all I needed to know.) When I announced my retirement, I was approached by a colleague I barely knew who offered his help in getting my new writing life off the ground. He’s become a good friend and I regularly draw on his wisdom. We’re all forever learning, and some of us could be a little more open to the advice of others.

Third of three parts

With the tumor removed, Gabriella began the healing process. Lisa and I held a vigil at her cribside. In the lounge, they offered chairs that folded out to beds. We took turns clutching at sleep, more me even though my wife was pregnant with Alexander. I pulled my knees to my chest in an exaggerated fetal position so my calves wouldn’t hang off the end. Terror touched sparks off exhaustion in the hollows of night.

It was all too much.

Again we faced an exercise in waiting. My imagination painted all sorts of dour scenarios, radiation treatment and chemo and worse. Much worse.

During rounds one morning, the mesh helmet came off. Her hairless head, the scar circling her scalp, her exaggerated hazel eyes – all of it summoned a pity too powerful for tears.

“What are we going to do?” my wife said for the dozenth time.

“I have no idea,” I confessed in the dim early light. “I’m out of hope.”

“You can’t be out of hope,” she said. “You have to keep hoping for all of us. For her.”

I knew I was the optimist in the family. I said I would try.

Soon enough we got to take her home again. The routine was familiar: the packing up of tiny clothes and hospital blankets the nurses insisted we bring with us. (I fixated on whether it was right to keep these things.) When I picked up her pink snowsuit, I remembered a moment on the day of the diagnosis when I walked in on Lisa’s mother, clutching that same snowsuit to her chest and dancing a mournful waltz, struggling for breath and understanding.

When we arrived home and I carried her into her bedroom, lifting her onto her changing table with the smile widening on her stricken face and our family around us laughing and pointing and me shivering with a hesitant joy, I wondered how much more we would all have to do the same. And I realized that I would do it however many times I had to, to keep her safe.

And then, once more, we waited. Waited for the phone to ring, for the sign that the doctors had an answer. For the results, preliminary or final, of the pathology report, from our hospital or from Chicago. Waited for anything to chip away at the horror of the frozen section.

We had waited so often before, but this was different. I could think of little else. Days passed. Lisa called their offices, first one neurologist and then the other, the plastic surgeon and the oncologist. Nothing yet. By now they should have heard something. Our minds invented explanations, mostly that they didn’t want to break it to us until Chicago confirmed the bad news.

One day, Lisa called and they told her to hold on. The plastic surgeon was coming to speak with her himself. Absently I put Gabriella down on her playmat. The darkness filled me again. I watched my wife’s face, expectant but with a sickly expression, then clearing, almost blank. Was it good or bad? She hung up.

In a dazed voice, she told me. The doctor was reluctant to get our hopes up until we got the final report from Pathology and the second opinion from Chicago, but it seemed as if the frozen section was wrong. So why did she look so pale? “He was surprised his staff didn’t tell us the last time we called,” she said.

“That was two days ago,” I said.

“He didn’t seem too phased by that.”

Anyway, it looked as if the tumor might be an angioma, a benign growth.

We could have been angry at that point, outraged even, at having been denied the answer for days that we had been desperate for, and we wonder why they hadn’t bothered to call us when they found out. “Wouldn’t they think we’d want to know that?” I asked.

Then jubilation sang through the house. I grabbed Gabriella under her arms and swung her around in merry circles, my daughter giggling with the rush.

“Be careful,” Lisa said, laughing through tears. “She just had surgery.”

A week later, Chicago seconded the opinion that the tumor was benign, although they called it cranial fasciitis. It seemed an appropriate name for the creeping monster that had cost Gabriella a piece of her skull, but in the end I didn’t care what kind of benign-tumor label they gave it.