In a darkened room, the light of day creeps through a window — calling to Ava Lajaunie. She closes her eyes, letting the golden rays warm her face. After a small sigh, a smile slowly graces her lips.
In an ever-changing world, the sun seems to be her north star. She loves it, says mother Richelle Lajaunie, 53.
“The sun is her friend."
And just like beams of light, Ava radiates joy. Her laugh is one of the aspects Richelle and husband Bryan, 56, love about their 12-year-old daughter. The family lives in Houma, Louisiana.
If she's crying there's something wrong. -Richelle Lajaunie
“For having everything she has, she’s always happy,” Bryan says. “Always laughing. You’d never know.”
Ava is autistic and also has a rare condition called Aymé-Gripp syndrome, says Richelle Lajaunie. Autism is a developmental disability that can create social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention. Aymé-Gripp syndrome is a genetic condition that presents itself with similar symptoms like hearing loss and facial features.
“I believe most of them are deaf, legally blind, autism, epilepsy, different things that they all have together,” Richelle says.
Ava is also deaf and nonverbal. She has cochlear implants that help her hear but won’t wear them all the time. Overall, she’s their happy girl and is the centerpiece of her parents’ day.
“Our whole world revolves around Ava,” she says.
They do everything possible for their daughter. For instance, when guests come to their home, if Ava wants the lights off, they’ll be off. They’ll sit in a room with flashlights on if that is what’s best.
By all accounts, they had a solid routine working for them. Ava would wake the couple up, go to school while her parents would be at their respective jobs, come home, play, eat, have fun rocking on the recliner she loved and would go to bed.
It's a part of life. We can't change Ava. That's what she is. That's what God gave us. - Bryan Lajaunie.
However, the family couldn’t have predicted that their world would be turned upside down when Category 4 Hurricane Ida barreled through Louisiana on Aug. 29. Their home was too damaged to live in, so they sought refuge in an RV named Hurricane they bought only two weeks before the storm.
A lost home. A lost sense of normalcy. A lost routine.
Ava’s friend, the sun, is seemingly one of the few constants in her life as she struggles to comprehend why she can't be in her house.
“She has a mentality of an 18-months to a 2-year-old, so she doesn’t really understand what’s going on,” Richelle says.
In the midst of disaster, the Lajaunie family is facing an extra layer of challenges when it comes to ensuring their daughter is taken care of.
Disability during a disaster
But they aren’t the only ones in this situation.Sixty-one million adults in America live with a disability as of 2020, according to the Centers for Disease Control and Prevention. Disabilities come in many forms and are essentially any condition, mentally or physically, affecting one’s ability to complete certain activities.
According to a 2019 American Community Surveyposted by the U.S. Census Bureau, 6% of children in Louisiana have a disability. This makes it one of the states with the greatest percentage. In total, 3,145 out of 72,840 children under 18 in America have a disability. This is 4.3%.
It begs the question, in a hurricane-prone state like Louisiana, what does it mean to have a disability in times of disaster?
In most ways, children with disabilities are affected and experience disasters like any other child, saysLaura Stough, professor of Educational Psychology and assistant director at the Center on Disability and Development at Texas A&M University.
This means that like any child, they are more at risk physically, cognitively, socially and psychologically in part because of their small stature and reliance on adults. However, the difference is that children with disabilities have vulnerabilities that can heighten their risk in those different areas. For instance, while most children may have difficulty taking evasive action, children with mobility impairments may need more time to evacuate a building.
But the middle of a disaster isn’t the end. There’s also the aftermath.
“The recovery process following disaster is actually the longest phase of disaster,” Stough says. “It can go on for weeks, months and in some cases, years.”
From research Stough and colleagues have conducted, they know recovery from disaster for those with disabilities tends to take longer and is more complicated than for other families.
In general, there aren’t a lot of groups focusing on disability-related services and resources during times of disaster. Some disability organizations that aren’t in the disaster business will try to find support to help fill that gap, but their research shows the number of these resources begins to rapidly decline just three months post-disaster, she says.
When it comes to not having a home post-disaster, families who have a loved one with a disability may need to figure out how to build in certain accommodations within a particular residence. For example, if someone has a mobility impairment but there aren’t any stairs in the new location they’re living in. Oftentimes, these built-in accommodations have to be done in more than one location.
“Families don’t typically move to one place and stay there and come home,” she says. “They usually make multiple moves post-disaster.”
In particular, for people with autism, times of disaster can be especially tough.
“One of the things that is common to many people with autism is that they do better when they have routines and when they know what that routine is and that things are reliable,” she says. “That’s the antithesis of what occurs in a disaster, right?”
As with most kids with autism, there's a strict routine. [Hurricane] Ida has just thrown a big wrench in it. - Richelle Lajaunie
And because autism is primarily a communication-related disability, one can see efforts to communicate through acting out or increases in stereotypical actions or behaviors that the family has potentially not seen for several years. They can experience regression, Stough says.
“It’s very difficult because these families themselves cannot make the environment more reliable because they’re negotiating this whole disaster venue,” she says. “And yet, they have somebody in their family who is really dependent on consistency and routine in order to function the best that they can.”
If possible, it may also be beneficial for the child if the family found a temporary living situation that can be maintained for a longer time instead of a large shelter. This can help in establishing a more calming environment, she says.
For a child who is displaced from their home, one particular environment that’s important is schools, she says. Trying to get a child back into a school routine as soon as possible is a great goal to have. Any attempt to establish a new routine could be beneficial. Parents, teachers or guardians can also help in the recovery process.
“The bottom line is if the parents are feeling somewhat stable and calm, that goes a long way toward supporting the child,” she says. “The best predictor of psychological well-being for a child post-disaster is their parents’ psychological well-being.”
It may also be beneficial to seek out disaster case management support that includes disability expertise, she advises. These can be part of services from the Federal Emergency Management Agency but can also include nonprofit organizations.
Contacting a long-term recovery committee in one’s local area and inquiring about case management, particularly somebody with disability-related expertise, can potentially locate somebody who can best help navigate one’s recovery process, she says.
Picking up the pieces
It's not over. It's definitely not over. - Richelle Lajaunie
In terms of the Lajaunie family, they’re taking the recovery process day by day.
“It’s not just the storm,” Richelle says. “It’s the after-effects of where we are and what we’re going through.”
With Ava’s autism, the lack of routine from the hurricane is making life extra challenging. Her bedroom was damaged, which was her safe place, says Bryan Lajaunie. She continuously goes into the home and checks on her room — wondering where all her things are.
Moving and adjusting their daughter into an RV in their driveway was a whole other story.
“She kept wanting to go to the door, she wanted out. Out. I want to go into the house,” Bryan says. “And what’d you gonna do? You just gotta keep on at it and make her understand that hey, this is our home for the next two months or so.”
Bryan had to carry his daughter from the house to the RV for almost a week and a half, he says. It hurts them to see Ava’s confusion and loss of routine. They have to pick up the pieces for her.
“I’m just trying to make everything normal again for her,” Richelle says. “If it was just us, it’d be a whole different story.”
They brought all of Ava's toys and personal belongings to the RV to try to make it seem like this was the place she needed to be. They even brought their recliner from the living room because she likes to fall asleep by rocking at nighttime.
She can't express herself. That's the bad thing. - Bryan Lajaunie
But Ava eventually got used to the motorhome — instilling another fear in the parents of how they are going to get her adjusted back to their actual house when construction is done.
“I don’t know how we’re going to get her away from there,” she says.
It may take a few weeks to get her used to the house again, Bryan says. They plan to do it gradually, potentially by bringing half of her toys into the home. At worst, they may need to hide the RV somewhere so it’s out of sight, out of mind.
Overall, the storm made the family realize and appreciate the life they had before the hurricane. For now, Richelle and Bryan are living their lives for the benefit of their daughter — fighting for a sense of normalcy for her.
“Right now our lives are on hold with Ava,” he says.
Richelle and Bryan love her hugs, her laugh and her joy. And even on the darkest days, Ava Lajaunie seems to be their sun, brightening up their world, no matter life’s circumstances.
