“Perseverance is not a long race; it’s many short races one after the other.”
The reality of this quote is best displayed in the example of parenting. It’s the short races of seeing your child take their first step, say their first words, and tie their first shoe. It’s watching them go to school for the first time, drive their first car, and have their first relationship. These short races and small victories that build on top of one another are what make the marathon of parenting durable and worth it.
These small victories are essential to persevere, because, though rewarding, parenting can become exhausting. Despite the incredible strength parents have to love and care for their kids, everyone has limits. Without these moments of growth and victory, there comes a time when parents reach a point of fatigue. For those with children with special needs, the level of fatigue becomes heightened. In the article “Bone Tired: Autism and Parental Fatigue,” Maureen Bennie summarizes a study done to analyze fatigue in parents of children with Autism Spectrum Disorder (ASD). Both Bennie and the study describe fatigue as a “sense of exhaustion that cannot be resolved by getting rest.” Rather than being tired, which can usually be relieved by getting a longer night’s sleep, fatigue is a state of being that is not easily resolved.
While most parents experience fatigue especially in the first few years of childhood, parents of children with special needs often live this “deep sense of exhaustion” for years on end. While the typical parent lessens some of their fatigue as their child matures and becomes more independent, a special needs parent often must still help with feeding, dressing, and other basic needs well into adulthood. Not only must they continue to take care of these needs, but more needs add on as their child gets older.
In the aforementioned study, researchers gave a sample of 112 parents with children with ASD a questionnaire to determine their fatigue level, which was associated with psychological, physiological, and situational factors. The questionnaire also touched on sleep quality, social support, depressive and anxiety symptoms, and overall parenting self-efficacy and confidence. The study found that fatigue was negatively correlated with overall parenting self-efficacy, which means that the more fatigued the parents felt, the less confident they felt in their ability to parent their children. The researchers used the results of this study to shed light on the need for more support and solutions for parents of children with special needs who have become fatigued.
Fatigue is difficult to face, and even more difficult to face alone. This is why it is essential to have a strong support system of friends and family who understand and/or can relate to the hard times we go through. Along with the above study, we have interviewed individual parents of children with various special needs in order to gather information about the greatest factors that cause fatigue, the different ways they have found to cope, and helpful advice they want other parents to know who are going through the same thing. We interviewed parents of children with various special needs and disabilities, including Autism Spectrum Disorder, learning disabilities, and mental health, with ages ranging from five to twenty-one.
The causes of fatigue varied across ages and needs. For some, the cause of fatigue was their children’s lack of independence. As one of the parents described, the challenge is found in their child’s heavy dependence on them for certain tasks that their typically developing peers have already mastered. Along with this dependence, there is also the constant worry about navigating situations that typical families wouldn’t even have a second thought about. For example, it takes a lot more effort and thought to orchestrate daily activities, because you have to consider factors such as familiarity with someone or something, whether a certain environment could cause anxiety, or determining transitions from one event to the next.
There are also financial stressors that come with needing more academic, dietary, or emotional help for their children. Along with all of these stressors that parents deal with on a daily basis, they must also help their child work through the worries and anxieties for their own future, helping them understand that their challenges do not make them any less than their peers, just simply different. When each parent was asked how they have learned to cope with the stress and fatigue, they unanimously said getting help from others was the #1 way they have been able to cope. They joined support groups, created therapy teams, and talked to friends for emotional support. They have all recognized that they can’t go at this journey alone.
If you are a parent of a child with special needs, pick a few people you feel comfortable letting into your life to know the ups and downs, the challenges and victories of parenting your child. As one parent stated,
“Love your children. Focus on one thing at a time. People will tell you to do so many things all at the same time. Focus on the victories. Accept the things they can’t do and give you and your kid a break. Every kid has strengths and weaknesses. Don’t forget what your kids are amazing at!”
These are the small victories. The short races we each endure will not look the same in a special needs parent, but they are victories nonetheless. It’s the friend your child makes without needing you there, and the food they make with minimal help. It’s the support system you put around yourself of friends who know exactly what you’re going through that help you get through the hard parts of the race. These small victories are what make the marathon worth it.