How To Manage Intrusive Thoughts as a Parent to a Child With Disabilities
The road to parenthood is often filled with flowery thoughts of all the fun moments you'll share with your kids. That fantasy can switch drastically once your child receives an unexpected medical diagnosis likely revolving around therapies and lengthy conversations with insurance companies leaving little time for living the life you imagined. Mourning the life you would have had is often where the first signs of guilt set in as the parent of a disabled child.
It's a reality Colleen Dallmeyer, a mom of three living in Inverness, Illinois, knows well and one she calls very hard. "I feel guilty when I end up dragging my daughter to another one of her twin's therapies and specialty appointments. I think about what she's missing out on even though I keep her busy."
Dallmeyer, who is also a pediatric physical therapist, notes the guilt isn't made easier when she's the target of unwelcoming looks from other parents, including when they see her running around with one twin while the other plays alone on the playground. "Even though they don't understand the circumstances and I'm doing what I have to, sometimes you feel like it's not enough," she says.
There's also a never-ending cycle of intrusive feelings all circling around the thought, "I'm failing as a parent." Dallmeyer says it's easy to find yourself questioning everything—from what you did during pregnancy to what you fed your child for breakfast and everything in between. That common uncertainty contributes to the fleeting feeling of being the cause of their child's diagnosis or lack of improvement. Of course, that's not the case, but it can be so hard to silence those thoughts, she adds.
Unfortunately, it doesn't help that we live in an ableist society, says Heather Clarke, a disability rights activist and an adjunct professor for early childhood and special education at Queens College, City University of New York. Ableism, which is the belief that our brains and bodies must function one way, can often be the root of those unpleasant thoughts, explains Clarke. Because of that, you may naturally find fault in yourself and the development of your children instead of a discriminatory society and a medical model that often provides little support.
"It's one of the reasons why we keep asking ourselves, 'What did I do wrong' and 'How can I fix this,'" adds Clarke. "Instead, you have to look at your child and see who they are."
Ridding yourself of these intrusive thoughts means finding support, learning coping mechanisms, recognizing it's a marathon, not a sprint, and doing a lot of unlearning. Here are four ways to change your perspective as a parent of a child with disabilities that can help you navigate the world together in a more positive way.
Ways to Reframe Intrusive Thoughts in Parenting
You are doing a great job advocating for your child
It is very common for signs of potential disabilities to go unnoticed. In fact, many parents report having mentioned their concerns to others, only to be dismissed as irrational. Rather than question if there was more you could have done earlier, acknowledge what you did do to help your child, which is a lot. Every phone call and appointment is an example of how strongly you are advocating for your child.
"We live in a world where it's so easy for everyone to discount differences so it's also very easy for us to feel ignored and then ignore our internal voice because of it," says Clarke. "I hear the stories so often from parents I coach. You need to let go of that guilt because you did all you could at the time."
You help your child succeed through obstacles
Some parents are relieved when they finally get a diagnosis for their child, while others may cycle through grief, denial, powerlessness, or other feelings, all resulting in resounding guilt. All of those feelings are completely normal to experience, says Keisha Wells, a Columbus, Georgia-based licensed professional counselor who specializes in grief counseling and mental health services for moms.
But accepting and finding peace with the diagnosis isn't about limiting your child, it's about removing stigmas you may be holding onto and learning to use the diagnosis to your child's advantage. "The diagnosis is not to label them, but to remove the barriers that keep them from fully thriving in the world," explains Clarke.
Clarke, who identifies as someone with disabilities, even struggles with internalized ableism sometimes. "I feel guilty when my autoimmune disease flares up, and I am not moving that fast because of my chronic pain or I can't get my words out because of my neurodiversity, but it all stems from ableism," she says.
Paying attention to your own language, dismantling your own ableism, and not looking at your child as having something "wrong" can help.
You are the best parent to each of your children
Being the parent to a child with disabilities can often mean centering your family's daily routine around the child with the diagnosis. It can become commonplace to adjust everyone's schedules to accommodate things like doctor appointments, administering medications, and behavioral therapies.
While you may feel guilty that you can't be in two places at once or your other child is consistently present in medical office waiting rooms, it's important to find ways to eliminate that guilt. That can be as simple as being intentional with having one-on-one time with your other children. Something as small and inexpensive as drawing pictures and throwing leaves around together can be the most meaningful thing for them, says Clarke. Or you can get recommendations from the specialists you're working with on things you can do to involve the whole family outside of sessions.
And make sure to pay attention to all the positives too. "It may be helpful to affirm yourself and recognize the daily practices you are managing well as you strive to maintain balance in caring for and spending time with the family overall," says Wells.
Besides, according to a study conducted by scientists at Tel Aviv University and the University of Haifa, siblings to children with disabilities tend to be more empathetic and more attentive to the needs of others—all qualities that can serve them well later in life.
You are enough
Parenting a child with a disability involves attending IEP meetings, learning medical jargon, applying for disability benefits, filling out lengthy forms, commuting long distances for specialists, and more. The problem isn't that you aren't doing enough; it's just really hard.
The solution? Practicing self-compassion. "Often, when battling guilt, a person focuses on what is lacking or needs to be done versus praising themselves for progress in what they have accomplished," says Wells. "It may seem cliché but acknowledging that you're doing your best in parenting is a powerful act of self-love and self-care."
Dealing with the guilt may also mean being mindful of the company you keep. Experts agree it's hard to find peace with what you're doing when someone is consistently making you feel inadequate. Feeling judged and criticized is a common complaint of parents to children with disabilities. Create a community online or in-person of supportive parents with related experiences so you can feel seen and heard, suggests Wells. Connecting with parents who feel similar can also help in managing feelings of isolation and provide solace in knowing you aren't the only one experiencing these unpleasant feelings while also learning how others manage.