Parents take on several tasks every single day: scheduling, routines, doctor’s appointments, meals, homework, school, practices, and so much more. For many families around the globe, an autism diagnosis makes that list even longer. Rather than spending time planning family vacations for the summer, most parents of children with autism are preparing themselves and their child/children for the behaviors that follow the dreaded routine change. Parents are researching summer schools and Applied Behavior Analysis (ABA) clinics, so their child/children does not fall behind, and arranging for assistance from caregivers through the summer to help with extra hours.
Autism Speaks says, “Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to work outside the home, on average they work fewer hours per week and earn 56 percent less than mothers of children with other disabilities and disorders” (Autismspeaks.org). A study in 2015 at the University of Regina researched fatigue in parents of children with ASD. In their results they found mothers to have higher numbers of fatigue. The problem begins to worsen when a mother understands and knows she is tired, but rather than offer herself a break, she continues to push herself. This begins to affect every decision and move made from that point forward. When fatigue sets in, people become more impatient, more reactive, and think less logically. This leaves the question, what is too much? How do you know if you are pushing yourself too hard? Is it time for a break? Most likely, the answer to that final question is yes. As much as society tells parents it is the norm to feel exhausted and burned out, it doesn’t mean it has to be true. The least selfish thing parents can do for themselves, and their child/children is to take a break.
The first thought in most parents’ minds when a “break” of any kind is mentioned leads to an extensive amount of stress followed by these questions: Who will take care of my child/children? Feed them? Get them places? Plan things? The list of questions goes on and on. Some parents feel they are being selfish by leaving their kids home while they get to rest. Kimberly Young, a hard-working mom with children with ASD puts it like this, “Self-care is actually just as important as caring for your child. We want to give all of ourselves to our children. We want to be everything and comfort them and meet all of their needs at all times. We can and we do. But ask yourself this: are you meeting your own needs too?” (themighty.com). Kimberly focuses on the importance of parents taking care of themselves, just as they care for their child/children. How does one go about taking time for themselves without feeling guilty or overwhelmed by the idea of a break?
Step one would be to find small times throughout the day to relax and take control of the small things. For some parents that means putting the kids down and reading a book, watching their favorite show, taking a walk, catching up on social media, or having lunch with friends. For others, it can be something as simple as letting go of the “to-do list” and just heading to bed. It helps parents to make a list of things that calm them. Then try and do one or two things from the list each day to calm themselves down and relax. Special Learning House, a website dedicated to resources for families with loved ones with ASD, shares twelve happiness tips for special needs parents. These include things like reconnecting with why one wanted to be a parent in the first place, tracking progress and growth, spa days, gratitude journals, sacred spaces, and more. Each is a small way that parents can learn to love themselves and give themselves time to relax and re-energize..
The next step is understanding the power of respite care and that it is not selfish. It is important to learn about respite care, the different types, where to find it, how to pay for it, and more. For some parents, a few hours away from home seems impossible. Respite care allows parents time away to relax, spend time with friends, or together, even if it is just a nap! Most states have resources that offer respite assistance for families searching for aid in paying for respite care. These breaks allow parents to continue loving and caring for their child/children to their best ability. Breaks give parents time to reflect and have more energy for daily tasks. Very well health says, “One study even showed that parents had less stress and better-quality marriages with every hour of respite care they had” (verywellhealth.com). Respite care has proven to give parents the time they need to continue to work hard for their families. Parents spend time teaching their kids the importance of sleep, mental health, and taking care of themselves but forget to practice what they teach their child/children.
Once parents learn the power that a break can bring to reducing stress and improving family dynamics, it is important to keep that practice. One three-day vacation a year is not going to provide the relaxation parents deserve and need. Rest must be a constant practice in their lives or things will seem to pile up quickly. Continue practicing self-care every day. Every parent is different, some need ten minutes on the couch with a good book and others need forty-five minutes with a friend and a cup of coffee. Discovering the best way(s) to relax allows parents to be aware of possible fatigue and burnout and provides an avenue of relaxation at the end of a long day. Once relaxation is found in the lives of parents, it is seen in everyday life. Parents begin to find they have more patience, better relationships, and less stress amid the days that would normally be the “hard ones”. Parents will never stop loving and sacrificing everything for their child/children, but sacrifice becomes dangerous when it leans on their own health. In the end, parents with less stress, more energy, and the ability to find relaxation even when it seems impossible, will be better equipped to take care of their child/children, and help them reach their full potential.
Resources:
https://www.autismspeaks.org/autism-statistics-asd
https://themighty.com/2015/05/letter-to-parents-of-children-with-autism-who-havent-taken-a-break/
https://www.verywellhealth.com/respite-care-for-autism-260445