How Autism Families Can Take A Break From Caregiving, Even When It Seems Impossible
Are you in need of a break from caregiving duties? Whether you are or not, it’s vital that you know about your options for respite care—a service in which you let someone else care for your loved one so that you can take a well-deserved break to go grocery shopping, take a dinner date, or simply relax at home. There are so many different options to choose from, including daycare, overnight care, babysitting, camp, and recreational activities. Respite care can last anywhere from a few hours to a few weeks.
Many people seem to think that respite care is a luxury—a special treat they can neither access nor afford. In reality, it is not just available but absolutely essential for caregivers. The importance of taking a break and resting cannot possibly be overstated. It may take work and research, but there are resources out there that can give you the break you need, if only for a few hours.
Getting Over the Psychological Hurdles of Asking for Help
Many devoted caregivers may hesitate to take a break or feel guilty for needing one, thinking that they should be able to do it all themselves out of love. However, this is not true. You are only human, and taking time away doesn’t mean you don’t love or enjoy caring for your child.
In reality, everyone—including your loved one—is better off when you’re refreshed, happy, and healthy; you can’t effectively help someone else unless your own needs are met. If you get burned out, it is going to negatively impact your caregiving. And besides, you need and deserve to have a life outside of caregiving duties. You matter, too.
Respite care can also be fantastic for your child, providing exposure to different things and different people. That can boost confidence, prime them for their future living situations, get them out of the house and engaging in fun activities, and socializing with other people. Sure, you may be the absolute best person to care for your child, but you are not the only one who can provide care. There are other people who can successfully care for your child for short periods of time, too.
It can be a big step to ask for help, and it can require some bravery. But remember: to be the best caregiver you can be, you need to care for yourself.
Finding Respite Care
Now, the million-dollar question: where, oh where can a person find some respite care?
There are a lot of different ways to answer this, so we’re going to start with the simplest options and work our way up to the ones that might take a little more work and digging. So before you say, “Oh, I already tried that” and give up altogether, hold on and bear with me for a second. You might find some potential options further down.
In Your Social Circle
As promised, simplest and most obvious options first: someone you personally know. Maybe that’s a family member—someone who lives close by or would be willing to make a trip over and lend a hand. Maybe another one of your children would be willing to help out, too, if they’re old enough.
No one in your family available? No problem. Look to your broader community—friends, places of worship, an autism support group you may have joined (in-person or even online), or other autism parents at your child’s school. The latter two groups could be especially good places to look. Why not set up a system in which you offer to watch their child sometime in the near future if they agree to watch your child for a few hours this weekend? You get a break while your child receives care from someone who gets it, and vice versa.
Recreational or Volunteer Activities
Are inside circles a no-go? Another option is to enroll your child in a recreational or volunteer activity of some sort. Maybe there are after-school activities out there specifically for children with special needs, or maybe there’s a volunteer opportunity your adult child can attend for a few hours each week. In addition to giving you some needed time off, it can spark a new hobby, provide entertainment, or make your child feel like a productive member of society.
Do a Search
There are also websites that can help you locate respite care options in your area. These include…
- ARCH National Respite Network. Definitely see what you can find here through the organization’s National Respite Locator
- Care.com. This website is a huge resource for all things caregiving—from helping you find caretakers in your area to providing parenting tips to explaining the ins and outs of respite care.
- Family Caregiver Alliance. This organization was the first nonprofit in the country to provide resources for caretakers. As such, it’s a great source that also includes the Family Care Navigator.
- National Adult Day Services Association. If you have an adult child in need of care, you may be able to find services and support here.
- National Alliance for Caregiving. This organization supports caregivers through research, advocacy, and innovation. Their website provides a list of resources that you can access for help.
- National Volunteer Caregiving Network. This organization networks different volunteer caregiving organizations around the country.
If looking through websites didn’t help you out, go out and ask around if others know of available services. You could turn to local government agencies like the Department of Developmental Services/Developmental Disabilities Council, nonprofits and advocacy groups in your area like your local ARC chapter, family services agencies and organizations, and even children’s hospitals if your child has specific medical needs in addition to autism. You can also turn to your child’s doctor, therapist, or teacher, as well as other autism parents and friends in your area. You may even glean some results by asking your Facebook community!
Still No Luck?
Hope is not lost. Retrace your steps. Is there something you may have overlooked in your initial search? Is it possible that someone in your social circle isn’t equipped to caretake now but could do a great job if you trained them? Have you ensured you looked into special programs like daycares and overnight camps? Have you tried tweaking your location search radius? Are you maybe looking for something too specific? Could you expand your list of reasonable options? Have you considered letting someone watch your child while you are still within property bounds (offering you a chance to relax without totally leaving your child in someone else’s hands)?
If you have exhausted every resource you can think of and still come up with nothing at all, why not start your own group? If you are struggling this much to find suitable respite care in your area, chances are good you’re not alone. See if you can reach out to others in your area and set up some sort of support system. And if taking initiative like that is not for you, maybe finding someone who could help you with daily tasks (e.g. grocery shopping, cooking, cleaning, carpooling) would also take a load off your shoulders.
How to Fund Respite Care
Unless you’re able to find someone in your social circle who is willing to watch your loved one free of charge, you’ll likely have to consider payment for services. This is where things can get really tricky because everything from cost to financial support to scholarships can vary depending on where you live, the support being accessed, what your child’s age and diagnosis is, whether or not you have insurance coverage, and what your income is.
This is where you’re going to want to turn back to those resources I provided earlier. In addition to providing suggestions for respite, those organizations and sources may also be able to offer financial information or provide funds to help cover costs. In particular, consider turning to the ARC of the United States, Easter Seals, and your state’s Developmental Disabilities Council/Department of Developmental Services.
When there is a will, there is a way, the old saying goes. And it definitely applies to finding respite care that works for you and the rest of your family. There may be a definite gap in support and services out there for families living with autism, but even if you can’t find anything now, don’t give up. Keep coming back periodically and looking; something or someone new may appear. Hang in there!