Anxiety: Why Special Needs Parents Feel It So Intensely

If, like me, you are one of the forty million Americans who experience anxiety, you know what it feels like to truly worry. I’m talking waking up late at night in a sweaty panic. Being sucked into a dark vortex of dread for no discernible reason, heart pounding, breath quickening, palms sweating. But as a caregiver or special needs parent, your situation can intensify these feelings even further.

Since my six-year-old daughter, JJ, began showing symptoms of her rare progressive disorder, Rett Syndrome, I have felt the true weight of parental anxiety. Rett Syndrome has stolen her ability to walk on her own, speak, and use her hands. It has also left her with a feeding tube, wheelchair, speech device, and epilepsy. Before this, my worries were fairly well managed, but now there are days when I feel like I fight my own demons as hard—if not harder—than my daughter’s disease.

If you have a medically complex or disabled child, perhaps you understand my pain. Even if you were not someone who struggled with anxiety before, there are now likely times when you face extreme stressors. And while there are many ways in which our children’s disabilities and diagnoses can increase our anxiety, I want to highlight a few of the most critical ones in this post.

Lack of Control: No matter what I do or how hard I fight, there are still moments when Rett Syndrome wins. For example, I had no control the day JJ first began having seizures. Or when she underwent “Rett regressions” and lost important skills. Or when she ended up with a feeding tube after she lost the skill and motivation to eat or drink by mouth. Finding yourself engaged in battles you cannot win is a tried-and-true way to make anxieties flare.

Unpredictability: Life sometimes throws us large, unexpected curveballs, like emergency surgeries or unexpected diagnoses. But, just as often, it leaves us with a string of smaller-level problems and changes to our daily routines that are so constant we can’t help but worry about them. This is why my family rarely takes vacations and why we avoid non-refundable tickets or situations where others depend on us. We simply don't have the luxury. JJ’s days can veer from good to terrible in a matter of minutes, and a single text from a scheduled helper can ruin our plans. This type of relentless unpredictability makes it almost impossible not to worry.

Uncertainty: While the present is unpredictable, the future looms like a giant question mark. Some children JJ’s age with Rett have already died of complications from their disease. Others eventually develop serious respiratory illnesses or pass away without warning. But there are some who, like her, are gaining back skills and abilities thanks to a newly-approved drug. A lucky handful are even participating in gene therapy clinical trials. I have no idea where any of this will lead my family and my daughter. Will JJ continue to benefit from her treatment? Will her well-controlled seizures someday stop responding to medication? Will she receive a gene therapy when she is older? How will it affect her? Will she make it to adulthood? Who will take care of her when we are unable to? The questions that haunt special needs parents can be as heavy and terrifying as they come.

Statistical Anomalies: Special needs parents have seen first-hand what happens when our children defy the statistical norm, and this knowledge can sometimes shake our very trust in the universe. My daughter’s syndrome occurs in one in ten thousand people. Before her diagnosis this statistic wouldn’t have given me a moment’s pause because I felt safe in my bubble of likely won’t happens, probably nots, and don’t worry about its. I now know better. Rett Syndrome has given me entrance into a vast network of parents whose children also have rare diagnoses or diseases and have ended up on the wrong side of the statistics. Sometimes these children require surgeries, suffer intense pain, deteriorate physically, or even lose the fight with their diseases altogether. And because I am a part of this community, I often am a bystander to these kinds of ordeals. Trust me—anxiety and watching worst case scenarios play out in real life do not mix.

Trauma: A significant number of special needs parents have experienced one or more traumatic events and continue to suffer the aftereffects. Even receiving a diagnosis can be traumatic if you are not expecting it or if it is not delivered in a calm and caring manner. My husband and I have watched JJ come close to death twice, undergo painful surgeries, lose and regain her vision, develop epilepsy, and lose her words and hand use. Sometimes it only takes a small reminder—the smell of a hospital corridor or the sound of a song we listened to in a dark moment—to bring those events, and their accompanying worries, rushing back.  

If you are a special needs parent, I would like you to look at this list and give yourself a metaphorical pat on the back. You are dealing with a lot. You deserve as much grace and compassion as possible. These are such significant obstacles to long-term, stable mental health that it can be nearly impossible to manage them completely.

There are, of course, steps you can take to combat your anxiety. You can find a therapist, exercise, meditate, or take medication if you need it. You can also do what I do, and fill out a constructive worry worksheet before bed. I have found this at least helps me reduce those dreaded middle-of-the-night racing thoughts and spiraling worries.

However, there is something else that gives me great comfort when it comes to my anxiety. Though it might seem unorthodox, I often challenge myself to consider the positives. Worrying can have distinct advantages—especially for caregivers. Often, we harness our anxieties and fears for the good of our loved ones. Worries can motivate us, encourage us to be proactive, and ward off a host of potential problems. By taking action, sometimes we can prevent bad things from happening or turn larger problems into smaller ones. Unlike depression—which can leave people listless and unmotivated—anxiety can be the fire in our gut that pushes us to action.

This has happened to me time and time again, but the most stand-out moment was when JJ was a baby. Most of the people in her life dismissed her significant developmental delays, assuming she would one day get back on track. I, however, did not. I was so worried that I ended up researching, talking to experts, having her evaluated, and—eventually—obtaining a diagnosis for her.

The rest, as they say, is history.

However, as helpful as it can be to anticipate and plan for the future, I am also learning how important it is not to let anything eclipse the here and now. At the same time that I harness my anxiety for JJ’s benefit, I am also becoming more flexible and stopping to savor the moment when things go well. Because that’s really the most important lesson for anxious parents like me: No amount of worry is worth missing the sound of a spontaneous giggle or the quick squeeze of an unplanned hug.

What has your experience been with anxiety? Have you had any moments when it helped? What are the ways in which you try to keep it in check? Let me know in the comments below.