I don’t think a female running a house is a problem, a broken family. It’s perceived as one because of the notion that a head is a man. Two parents can’t raise a child anymore than one. You need a whole community– everybody– to raise a child. The notion that the head is the one who brings in the most money is a patriarchal notion, that a woman – and I have raised two children, alone – is somehow lesser than a male head. Or that I am incomplete without the male. This is not true. And the little nuclear family is a paradigm that just doesn’t work. It doesn’t work for white people or for black people. Why are we hanging on to it, I don’t know. It isolates people into little units. People need a larger unit.

– Toni Morrison (Taylor-Guthrie, 260)

As any thoughtful perspective does, Toni’s got me thinking about just how much our little units do, in fact, fail modern families, and how in the disability community, this isolation is often felt more intensely because time and support are so much harder to come by in a world barely structured to accommodate variations in neurology.

We all need judgement-free help. We need people to come alongside us and love our kids, without telling us all the ways they believe we’re failing our children. Caretaker fatigue/burnout is a term often applied to looking after aging parents but is also a reality for those caring for disabled family members of any age, even– and especially- disabled children.

This struggle is compounded when a parent is neurodivergent (knowingly or unknowingly), working to understand the causes of their own challenges while helping small people to navigate their diverse neurology. It’s not caretaking, but caretaker fatigue, that robs many of us of some of the most profound joys of parenthood.

What should be the most enriched and enjoyable time of our lives turns into a daily countdown of chores and responsibilities necessary to keep everyone alive. Reaching bedtime becomes the goal of each day, and much of the beauty of life is missed as a result.

There is no conversation about fatigue that doesn’t eventually circle back around to the state of how society is rigged against families navigating disability, from the fiercely-competitive job market to the self-defeating and impossible path to access supports and accommodations– but that’s for another post.

Circumstances that can contribute to caretaker fatigue are mostly what you’d expect: lack of alone time to recharge because you’re constantly needed,  distress over the way a person’s disability impacts their/your family’s lives because of how society responds to them, etc.

Healthline.com offers these suggestions to prevent burnout, but few of these are practical options for people living in high-demand/low-income situations:

• Ask others for help. Remember that you don’t have to do everything. It’s OK to ask friends and family to do some of your care-taking tasks.
• Get support. Talking about what you’re going through and getting support from family and friends or a support group helps you process your feelings and emotions. Holding everything in can make you depressed and contribute to feeling overwhelmed. Consider seeking professional counseling, if necessary.
• Be honest with yourself. Know what you can and can’t do. Do the tasks that you can, and delegate the rest to others. Say no when you think a task will be too stressful or you don’t have time to do it.
• Talk to other caregivers. This helps you get support as well as allowing you to give support and encouragement to others going through something similar.
• Take regular breaks. Breaks help relieve some of your stress and restore your energy. Use the time to do the things that relax you and improve your mood. Even 10-minute breaks can help.
• Attend social activities. Meeting with friends, continuing your hobbies, and doing things you enjoy are important to maintain your happiness and avoid isolating yourself. The activity should be something that gets you away from the daily routine and setting of caregiving.
• Pay attention to your feelings and needs. It’s easy to forget to take care of your needs when you’re a caretaker. It’s important to focus on of yourself regularly and take care of your needs.
• Take care of your health. Keep your regular doctor appointments, including for preventive care, take your medications, and see your doctor when you feel sick. If you aren’t healthy, you can’t take care of someone else.
• Eat a healthy diet. Eating nutritious meals keeps you healthy and improves energy and stamina. Avoid junk food, which can make you feel sluggish.
• Exercise. Exercising is a great way to relieve stress, increase energy, and take time for yourself. It can also improve depression.
• Maintain your sleep schedule. Getting enough rest is important for your well-being and to maintain your stamina.
• Take family leave. If you work, make use of family leave benefits available to you. Removing the stress of work can reduce your responsibilities and free up more time for yourself.
• Consider respite care. When you need a break, using respite care for a few hours to a few weeks is an option in most places. When you need a few hours or a day for yourself, in-home services, such as a home health aide or an adult day center, can take care of your loved one. A residential care facility provides overnight care if you need a longer break.  Based on income and state-specific laws (if you are in the United States), Medicaid or insurance may provide respite care services for family members who are the primary care-taker of someone with disability.

While the above suggestions are good advice, many just aren’t feasible for people with little-to-no support. There aren’t any breaks for a caretaker who can’t financially afford to outsource help, or for a nuclear family/single-parent home that doesn’t have extended family support– often both.

Maybe you’ve recently moved to a place where you don’t know anyone?  Or maybe your friend circle has waned since your availability and circumstances have changed? There is no respite from caretaker responsibilities when a parent is without an external support system.

Family leave, if it is even offered through an employer, is used for times when our children are sick. Parents often work through their own sickness in anticipation of having to use their sparse leave time caring for their children.

Here’s what I recommend instead, for surviving without additional help– in the meantime– because it’s important to seek out a community:

• Examine your own triggers. As parents of neurodiverse kids, we’re pretty accustomed to studying situations to determine the cause of their distress so that we can better prepare them/help them to avoid those same stressors in the future, depending on the circumstances. Many of us have learned to ignore our own sensory sensitivities after years of being gaslighted into doubting the reality of their existence.

  This creates immeasurable amounts of background anxiety in our day-to-day lives. Like background radiation, there is a certain amount of anxiety that exists in our environments that we aren’t always aware of, and that coupled with other triggers can be detrimental to our well-being.

  Seeking to rediscover these causes for our anxiety is a continuous improvement process, in that you won’t likely ever arrive at a place where you’ve figured it all out, but it’s important work that will improve your relationships and will help you to lay the foundation for creating a calming environment for everyone who lives in your home.

• Pause the show. When anyone in my house wants to have a conversation with me, I ask that they first pause any other noise-creating activity because I can’t process the sensory input of both.

  So that my daughter knows what to expect, I explain that she can turn her show/game, etc. back on as soon as we’ve finished talking, and that it will be in the same place she left off.  There is a need for this level of specificity because autistics often need more information than is customarily provided in everyday conversations. We need to know what to expect so we can adequately prepare ourselves to “shift gears,” so to speak.

  Anxiety builds in a similar way to micro-aggressions, in that they pile on to a person over time, causing eventual overwhelm.

  Accommodations for disabled people are an absolutely necessary part of life. Finding ways to accommodate our own sensory needs as caretakers can seem like an insurmountable obstacle when faced with the myriad needs of our children, but upholding small boundaries is a way to retain some of our inner peace as we navigate the uncharted expanse of neurodiverse parenthood.

• Find ways to reduce anxiety in your home environment. I’ve always considered home to be a safe space where everyone should able to be themselves – a place where they can find rest.

  If you can’t create an entirely calm home for financial reasons, try to find ways to create at least one space in your home that doesn’t add to your distress. For us, it was painting our living room. White walls exacerbate anxiety in both my husband and myself, in a way that we didn’t even notice until we really started to examine our sensory triggers after years of masking. We now have one room in the house where we can truly relax, and it has done wonders for our mental health.

• Work as a family to let go of judgement. Many interpersonal conflicts in life are rooted in miscommunication. We are all doing the best we can, and in families with diverse neurology there will be even more opportunities for miscommunication because we often struggle hardest with verbal communication, which is typically the default means of expression.

  It took my husband and I five years into our relationship to realize that the other person isn’t being spiteful or mean during a misunderstanding, we’re just confused about what has been said and one or the other needs to provide more information to rectify the situation.

  This applies to kids as well, but so much more. If we as adults can’t always say exactly what we mean, or sometimes feel our emotions get in the way of effective communication, how much more do kids– who are still in the early stages of learning– need our patience with missed communication signals?

• Divide the workload according to individual strengths. Many of us struggle with executive function. If you have an opposite-gender partner, it can be really helpful to exonerate yourselves from the burdensome expectations of gender roles.

  Divide the tasks necessary to run a household into manageable bits. I struggle the most with making phone calls. I handle most of our bill-paying online, and resolve any customer service issues that can be done through an online chat feature, but I leave most all of the actual phone calls up to my husband because he doesn’t struggle as much with that particular task.

  He works long days and struggles to get moving in the morning, so I make his lunch for him before I go to bed. We strategize to help one another succeed.

• Adjust your expectations to be realistic for your situation. Something that contributes largely to my personal level of background anxiety is societal expectations. We are all accustomed to being inundated with messages about what our choices say about who we are.

  Life is busy, especially for people with disabilities. In our household, the expectation has become “basic needs met” (including social and emotional) which means that the clean laundry can sit there for another week until we’ve worn it all and the process repeats, if that means we can reduce our personal workloads to create downtime at a point where there once appeared to be none.

  The only way this truly works to create rest is if you can also let go of the guilt that accompanies an unfinished task. That’s the tricky part, and it takes learning to value yourself separately from what you may have or have not accomplished.

• Figure out what you can really handle. Every day is different, complete with varying degrees of challenge. There is no set formula that works to make life perfectly and predictably manageable, but learning to see our personal needs as a part of the equation in what our family needs allows us to better care for them.

  I usually cannot handle loud, hot environments with a lot of strangers unless there are no other responsibilities placed on me for the remainder of day (and ideally, the next few days). I need more time to recover from this sensory experience than there is often available to me as a mother, so I tend to try to find activities (or employ strategies) that balance my need for peace with my child’s need for social interaction.

  I can more easily manage a playground play date if there are other mom friends there with me. This frees me up from some of the pressures that come with constantly masking around strangers, and also reduces some of the stress I feel over my child’s own anxiety about playing with kids she doesn’t know.

  It’s easier to venture into new social situations with a friend by your side, both as an adult and as a child.

• Build your tribe. Autistic people are pretty stereotypically considered to be unsocial, which I think is tragic. Most of us have experienced significant trauma growing up in a world where people didn’t understand why we responded so intensely to things they barely noticed.

  And for many of us, part of this trauma comes in the form of having tried for years upon years to communicate that intensity of feeling but finding ourselves so consistently misunderstood that the resulting heartache causes us to withdraw.

  The Internet has been a great resource for me in making friends. In addition to finding wonderful autistic support groups made up of people who know exactly what I am experiencing because they are, too, I  have participated in various mom groups in two different regions of the country and all have been mostly-positive experiences.

  If you can’t find what you want, start a group of your own through Facebook or Meetup. It will be small at first, and like all things in life, you’ll need to take proper precautions for safety, but maybe a small community is all you need. If you want a larger circle, you might have to do a little work to get it going, but the reward of companionship and support from any size community is invaluable to the mental health of you and your family.

  I couldn’t find the courage to do this for myself, but I knew that my daughter needed more social interaction than we could provide for her at home. Many days were a struggle to get out the door (and often still are, but less so now that we know how to adequately prepare for everyone’s specific needs). Sometimes anxiety still keeps us from showing up, but every day is a fresh start.

  One of my favorite quotes: a little bit of something is better than a whole lot of nothing. These lyrics from a song by Robert Parker are actually intended to portray a perspective of gratitude, but for me they have long resounded as motivation for progress. Incremental changes are so much easier to achieve than complete overhauls.

  Start small, and you’ll make far more progress over time than if you throw yourself fully into something you’re not ready for. Confidence is built over time. Give yourself plenty of patience, and forgiveness when you don’t reach a goal as quickly as you’d hoped you would – then try again tomorrow.

References

Taylor-Guthrie, Danille. “The Pain of Being Black: An Interview with Toni Morrison” Conversations with Toni Morrison, translated by or edited by Danille Taylor-Guthrie, Jackson, University Press of Mississippi, 1994, 260.

Moyer, Nancy. “Caregiver Burnout: Symptoms and Treatment.” Healthline, Healthline Media, 27 Nov. 2018, http://www.healthline.com/health/health-caregiver-burnout.

Robert Parker. “A Little Bit Of Something (Is Better Than A Whole Lot Of Nothing).” Discogs, 1 Jan. 1976, http://www.discogs.com/Robert-Parker-A-Little-Bit-Of-Something-Is-Better-Than-A-Whole-Lot-Of-Nothing/release/5618738.