Intentional or not, parents of children with special needs can be made to question their sanity, judgment, even their own memories
By Danielle Braff
FIRST PRINTED IN MARCH/APRIL 2023
Terry Matlen has self-diagnosed herself with having IEP PTSD. And many special needs parents may be able to relate.
Matlen, a Birmingham mom of a child with special needs, says she arrived at each IEP — from her daughter’s preschool years through her post-high school years — with such severe anxiety and later depression, because she and her husband were constantly being told they were the problem.
“I was known as ‘the angry mom’ by the school officials because though I was physically ill, anxious and angry at each meeting with special education staff, I still fought so hard for my daughter’s education rights,” says Matlen, who also is a licensed medical social worker.
She’s not alone.
While there haven’t been any large-scale studies specifically about gaslighting in the special needs arena, there’s been plenty of anecdotal evidence that it’s routinely occurring. Gaslighting is a type of psychological abuse where a person is made to question their sanity, judgment or even their own memories and reality.
Gaslighting for parents of children with special needs also happens because others may be misguided in their attempts to try to make them feel better, or to reassure them that the concerns they’ve noted about their children are unfounded or are likely to be outgrown over time, says Corrie Goldberg, a licensed clinical psychologist and the founder of Shore Therapy Center for Wellness in Chicago.
“Although these reassurances may be well-intentioned, they can ultimately cause confusion, distress and doubt for the parent, undermine their attempts to advocate effectively for their child, and delay or prevent the child from receiving needed interventions and support,” Goldberg says.
This is exactly what happened to Matlen, whose daughter suffers from brain damage. Nearly 100% of the time, Matlen says, educators and administrators deflected her concerns and pushed the blame onto her and her husband — or denied that the problems existed.
“It’s more than common; it’s generally a given,” Matlen says.
One time, Matlen’s daughter was placed in a fifth grade classroom although she was reading at a first grade level. Her teacher gave her a fifth grade exam, which she failed, and she received a big red “F” on the front of the exam paper.
“How much more can one destroy the self-esteem of a child who doesn’t fit in, can’t keep up, is shunned by teachers and fellow non-disabled students?” Matlen asks.
Shannon Davis, a physical therapist and certified autism specialist, had a similar situation when she attempted to identify her daughter’s needs for reading support. Davis approached the first grade teacher and was told not to worry about her reading, as this happens to all kids when they are in bilingual classes.
After spending thousands of dollars in private assessments showing vision impairments and learning delays, Davis managed to convince the school that her daughter needed help.
“I was not crazy — she does have something going on,” Davis says. But it wasn’t so easy. Davis was informed that her daughter wasn’t impaired enough or delayed enough to receive support. After she unleashed her “momma bear advocate” and threatened legal action, her daughter received the vision, occupational and speech therapy she needed.
“Seeking out information from books, online resources, support groups or specialized professionals can help families feel validated in their experiences and can better prepare them to advocate effectively, and call out gaslighting when they experience it, rather than be stopped by it.”
Misunderstandings and isolation
Often, special needs parents are gaslighted because other parents don’t understand the complex needs special children have — and as a result, the other parents may view the behaviors and learning challenges of special needs kids as misbehavior or bad parenting. That’s when the other parents may gaslight the parents of special needs kids, explaining that if those parents were just stricter, for example, then their children wouldn’t have any issues, says Mo Mulla, the founder of Parental Questions, a family-run blog providing resources for parents.
This frequently makes parents feel isolated and alone when it comes to advocating for their child’s needs in school or at home, because so few people are willing or able to comprehend what it takes to care for a special needs child, Mulla says.
Sometimes, even special needs parents don’t completely understand their children, and as a result, gaslighting unintentionally occurs here, too.
“It’s not always with malice, it’s often just survival or getting through a situation,” says Lisa Lightner, a special education advocate and lobbyist.
For example, let’s say you’re out in public, Lightner says, and your child says that it’s too noisy, too bright, too smelly, that they’re hungry, they’re hot, they’re cold — and we respond with, ‘You’re fine, we’re leaving soon.’
But your child is not fine: They just told you they were not. Instead of validating their feelings, we told them that those feelings don’t exist.
“What if instead, we chose our words more carefully? ‘I know it’s very noisy in here, it’s bothering me, too. But we need to stay here and watch the end of your brother’s game, and then we’ll go home,’” Lightner suggests.
What to do
Gaslighting in any form is harmful: It makes you question everything, doubt yourself and have imposter syndrome, Lightner says.
When you’re faced with an IEP team and you have a concern that the team insists doesn’t exist, it’s very isolating. Then, when parents network with other special needs parents and realize that they’re not crazy, that they’re not imagining things, it ruins their relationship with the school, Lightner says.
There are, however, some things you can do if you believe you’re being gaslighted.
Matlen became very involved in her daughter’s education. She joined the Parents Advisory Committee so she could attend monthly meetings with the special education directors to help develop and offer feedback on the special education services in her district. She also developed parent groups so that other parents have a voice in determining what was best for their kids as a group. She engaged with the media to cover stories of some of the events she faced or witnessed and she attended school board meetings.
“I led groups of other disgruntled parents so we’d have a voice,” Matlen says.
She suggests that other parents start by educating themselves, learning the rules and regulations that protect children with special needs. Check out the Council of Parent Attorneys and Advocates to start, she suggests.
Once you’ve learned about your child’s rights, you can reduce the negative impact of gaslighting from other sources, Goldberg says.
“Seeking out information from books, online resources, support groups or specialized professionals can help families feel validated in their experiences, and can better prepare them to advocate effectively, and call out gaslighting when they experience it, rather than be stopped by it,” Goldberg says.