“Acknowledge that it’s really uncomfortable to not know what’s going to happen,” Diane says. As parents of children with disabilities, “we all know what it’s like when you have a child who changes your life in ways you did not expect, and to be presented with a totally different plan than what you were expecting or no plan at all.” And that’s exactly what we’re going through now. “I think everyone is getting tired of getting used to this, but there’s a sense of flexibility and resiliency that we can draw on,” Diane says.
It’s also important to remember that we all live with uncertainty all the time. “We go through our lives assuming we know what’s going to happen tomorrow, but the reality is that we don’t. We have to learn to live with this unsettledness of what’s coming next.” Diane adds that it can be helpful to start with what we know. “Check with everyone in your household to see how everyone is doing — is everyone physically well? Does everyone have enough to eat and a place to sleep? Sometimes it’s as basic as that.”
Diane’s first son was born at 26 weeks. “He went through a lot of medical trauma and was in the hospital for 4 months,” she explains, adding that he had cerebral palsy, severe developmental delays, cortical blindness, and a seizure disorder. “He was my joy and my heartbreak. He was not able to really do anything for himself except smile from ear to ear.” Her son passed away at age 17.
Diane had a second boy when her first was 2 ½. “He was born on time and was perfectly responsive, but it turned out that he has Fragile X syndrome, which is a cocktail of intellectual disability, autism, and anxiety. He faces challenges but is a lovely grown-up man living on his own and working in a movie theater.” Diane tells us that she is no stranger to uncertainty, having lost her first son, been through a divorce, and lost two homes (one in an earthquake when her sons were little, and one more recently in the Woolsey Fire). “I consider myself blessed and challenged to be part of this community,” she says.
There’s a fear that if we see regression in our child, we assume that means they won’t regain that progress. “If we look at things in the short run, it can become really overwhelming and scary; we can get really focused on what our kids are doing or not doing, or how they’ve lost certain skills, and we worry that they’re never going to come back, but it’s possible that we’re not seeing the big picture,” Diane says. “I remember feeling like there was this closing window, and if I didn’t get under it, it would shut forever. But I do think that learning continues to take place throughout the lifetime; we have the long term on our side.” Diane says that it’s completely natural to have negative thoughts and fears. “Some people are really proficient at catastrophizing everything, coming to the worst possible conclusions (‘my child is going to lose all these skills and we’ll be back to square one’) — we have to be mindful of when we do that. When you have a negative thought, ask yourself, ‘Is there any evidence to support the outcome I’m imagining?’”
“Parents are led to feel responsible for how their child progresses from the get-go,” Diane adds. “Sometimes we have these circumstances where you have to play every role: the parent, the therapist, the teacher, the personal aide. It goes back to expectations and having a sense of self-compassion. Imagine what you would say to your best friend who told you their child isn’t making enough progress and they think it’s their fault. You would tell them they’re doing the absolute best they can given what they have going on. We’re good at saying this to people we love, but we’re not very good at saying it to ourselves.”
Diane emphasizes that the expectation that one person can be many things at once (parent, therapist, teacher, personal aide) and do really well is unrealistic. “Balance is a wonderful intention but it only exists momentarily; you can’t have all those plates spinning in the air without some of them crashing down.” She says that we have to accept a lower level of performance in every one of these areas. “What we have to expect of ourselves is to be good enough, to get through the day. Do what you can do. You’re not going to be the best teacher or the best therapist in the world for your child; you’re going to do the best you can.”
“Exercise in whatever way you’re able to get it, even if it’s just walking around the block with your family.” Taking care of our bodies is something you can convey to your kids, too.
“Asking ourselves how we’re breathing can be so important,” Diane says. She explains that in addition to the flight-or-fight response, the body has another response called “rest and digest”: “We can trigger that part of the nervous system by breathing. It calms the body, we can feel our food digesting, take in ideas, and our brains start working better.” Intentional breathing engages the part of the nervous system that helps us to calm. “Paying attention to what’s going on in your body isn’t a selfish act; it’s actually in service of being present for our families. When we’re feeling calmer and better, we can transmit that to our children. We can teach them how to do it. Say, ‘Let’s take a moment, let’s stop, let’s breathe; let’s feel our bodies with our feet on the ground and be here right now, be fully mindful of this moment.’”
On feeling isolated and disconnected: A lot of people say, “We’re all in the same boat,” but Diane points out that we’re not really in the same boat at all. “We’re in the same storm, but everyone’s boat is different, and some people’s boats are more precarious. What is essential when you have any life circumstance that makes you feel disconnected from what I call the ‘civilian world,’ is to feel like you’re not alone, to connect with people.”
And yet, too much connection isn’t necessarily the answer when we’re with our families 24/7. “Try to find some physical and mental space of your own,” Diane recommends, even if it’s just the bathroom. “Find that little opportunity. Maybe it’s getting up 20 minutes earlier than your children, sitting in your backyard, having a cup of coffee, and watching the leaves blow on the tree. Something small that can become a ritual.”
While Diane acknowledges she doesn’t have concrete answers for how to make all of this better, she wanted to share these final reminders:
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