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Depression and Special Needs Parenting

Sad spelled out in blue ink on a white canvas

Many special needs parents battle unspeakable things under unimaginable amounts of pressure. It’s no wonder we sometimes suffer from downward spirals of negative emotions and periods of dark thoughts. It has certainly happened to me more than once.

The last time I felt the fog of depression descending, I decided to write about it on my blog as a way to cope. As I sat down to brainstorm this post, I made a list of all the factors that can lead parents like me down the path to depression.

I’m sharing my list with you, not as an excuse, but as an explanation. I’m hoping that those of you who aren’t special needs parents or caregivers will get a glimpse of why our dark thoughts can start to circle. And if you are part of this group, I’m hoping this post will help you feel less alone, as well as less guilty about having what are perfectly understandable emotions under difficult circumstances.

I am thankful that the first thing on my list of depression factors for special needs parents—marital strife—is not something I have to worry about often. But even though I have a supportive co-parent and spouse, not everyone does. Some experts put the divorce rate of special needs parents at around 80-85%. Having a disabled or neurodiverse child puts a lot of pressure on people. If there are any cracks in the marital foundation, they soon become a problem.

Then there are the staggering financial responsibilities. According to some calculations, having a disabled child quadruples the normal costs of parenting. In our household, we face one-time costs for things like my daughter’s wheelchair, gait trainer, specialty bed, and communication device. But we also have recurring costs like co-pays for appointments, special orthopedic shoes, and daily vitamins and supplements. For anyone without savings, high-quality insurance, or government support, these costs can add up at a frightening rate.

As strange as it sounds, special needs parents are also often in physical pain. Those of us who care for a disabled child are required to lift and carry our child and their equipment in and out of cars, wheelchairs, and beds on a daily basis. Other parents have to deal with running after escaping children or restraining them during dangerous meltdowns. All of this can easily lead to injuries or chronic pain. My own personal hell comes in the form of spinal issues and shoulder and neck pain. When that pain flares up, it’s hard to stay positive.

I would be remiss if I didn’t also mention the constant sleep deprivation that haunts us at every turn. Many disabled and neurodiverse children wake in the night, which means their parents do too. But we don’t get up to rock our children gently back to sleep with a lullaby. We are repositioning them, administering medications, dealing with bathroom issues, troubleshooting mystifying screams, and trying to ward off self-harm. We deal with these stressful, unpredictable awakenings not once, but night after weary night, year after exhausting year.

Loss of status, value, and identity are also part of our equation. Around forty percent of special needs parents end up quitting their job. Even those who do stay in the workforce need workplace accommodations and often find job advancement difficult. As we struggle with our careers or give them up, we also give up any kind of job-related status or respect. And don’t forget to add in the soul-sucking experience of navigating the health care system and insurance companies that often treat patients and their loved ones as numbers and cases, rather than as human beings worthy of consideration. Even though it has been three years since I quit the job I loved, I still miss it and the feelings of value and worth it afforded me.

While all these are real challenges, nothing causes dark feelings like concerns about the future. I constantly worry about the decades to come. What will happen to JJ when I’m too frail to lift her? When my husband or I need a hip replacement or spinal surgery? How will we pay for her care? What will it feel like to ask the court for guardianship when she turns eighteen? How will we find affordable and trustworthy day programs or residential care for her as an adult? Or, worse yet, how will it feel if we outlive her? I’m not the only special needs parents lying on my pillow at night with questions like these keeping sleep at bay.

Life with my daughter is also an exercise in constant uncertainty, which doesn’t help my mental state. Girls with her syndrome can die at a young age but can also live into their twenties, thirties, or beyond. Science is advancing quickly, but will it be quick enough to help JJ? Will she stay alive long enough to benefit from a gene therapy? For our family—and for many others—it’s all questions and no answers.

Another depression factor is the wild unpredictability we live with on a daily basis. By the age of four, my daughter had already undergone two emergency surgeries. But I’m not just talking about medical crises. I also mean the smaller things, like illnesses or child care issues. JJ has a terrible immune system, and we never know when the next germ is going to hit. I also struggle to find predictable help for her. At least three to four times a week I get texts rescheduling or canceling care that I had been counting on. It’s hard not to feel down about that.

And this leads us to the next factor on the list: the lack of replacement caregivers. If I leave someone with JJ, they need certain skills. They have to know how to keep her safe during a seizure, administer her dozen daily medications, and set up her five daily feeds. They also have to be trained on her array of medical equipment, like her feeding tube and pump, speech generating device, wheelchair, nasal suction machine, and gait trainer. If I want a break from my daily grind, it’s not a simple case of hiring a babysitter before stepping out the door for a date night. Instead, I spend copious amounts of time finding the right trustworthy person and training them how to care for my daughter.

Because it is so difficult to find someone to care for JJ, to travel anywhere with her, and to escape her caregiving tasks, parents like me often experience a loss of free time and pleasurable activities. As someone who enjoys learning languages and seeing other cultures, I love to travel abroad. But that is a thing of the past. I can’t imagine taking JJ, her feeding pump and liquid formula, wheelchair, specialty car seat, bath chair, and array of medications on an airplane. Instead, I content myself with much more feasible hobbies, like going to the gym, reading, or writing. But even these things are only possible when I have the time, energy, and child care to make them happen.

Lastly, parents like me are no strangers to trauma and grief. JJ has already lost many skills and abilities—chewing, swallowing, walking, speaking, using her hands—and I have grieved every one of them. I have also had to let go of nearly everything I imagined for my family’s future. I have so many times I wish I could forget. There was the day my husband and I purged the house of all the toys JJ could no longer operate with her useless hands. The nights we spent sleeping on the hospital floor, praying her brain surgery would be successful. The times we watched our oldest daughter pull her hair out because of our family’s stressful life. But my grief and trauma aren’t limited to what my own family has experienced. The more I become a part of the Rett Syndrome community, the more often I come across tales of other struggling families, stories of decline and suffering, and death notices of girls who lost their fight against the disease. Parents like me have a lot to process and to grieve.

So what to do about all of this? Most of us know the common wisdom about combatting depression. Experts tell us to maintain a healthier lifestyle, get more sleep, exercise, meditate, talk to a therapist, or try medication. All of these things are wonderful and have helped me with my emotional struggles so far.

But these coping mechanisms can only get you so far. When your situational depression is caused by the stress of caregiving, there is no better remedy than an escape from the caregiving. I truly believe that what special needs parents need in order to stop our cycle of depression is regular time away from our children.

Sadly, that’s much easier said than done. It can be heartbreakingly complicated for us to get time off. But even though it can feel like an impossible goal, it’s still one worth striving for. It’s something I’m working on right now, though it’s certainly not easy. The stress of our family life and JJ’s caregiving tasks aren’t going away any time soon. So I don’t plan on giving up any time soon either.

Have you ever suffered from a bout of depression? Was it related to caregiving? What were your experiences? Let me know in the comments below.

1 commento

Ashley Gearhardt
Ashley Gearhardt
05 mag 2023

This is so honest and poignant. It is a Herculean task and I appreciate how you share the very real human toll of these challenges. It let's others know they are not alone.

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