Caring for Our Caregivers, Now and Always

November is a time for gratitude—for appreciating the family, friends and loved ones who bring us joy and enrich our lives. It's also National Caregiver Awareness Month. Few are deserving of gratitude as much as the caregivers in our community who devote their lives to their autistic loved ones, working tirelessly to secure the right services and benefits for them, and support them through challenges big and small, often long through adulthood. For parents, guardians, siblings and so many others that fill the role of full-time caregiver, sometimes on top of a traditional 9 to 5 job, our ultimate goal of doing whatever it takes to ensure a safe and happy life for our autistic loved one is top priority.

It can be difficult for others to understand the responsibility that comes with being a caregiver to an autistic child or sibling. As a caregiver, all their emotional, physical and mental well-being rest on your shoulders. Decisions about every part of every day are made with them in mind. From the mundane grocery run to family holiday celebrations, every experience is planned out in advance so their needs can be met. Caregivers become experts in looking at everything from their autistic loved one’s point of view, to be able to adapt and plan for whatever may be needed. It can be hard to join in unplanned events and special community activities, like a holiday fair. You will often see caregivers skipping these events, because they are putting their autistic loved one first. This can look and feel isolating, which may be particularly true if your autistic loved one cannot live independently and relies on you to fulfill even their most basic needs. It is a tremendous amount of responsibility to carry, especially without help.

Coming to understand that help is needed can be very difficult for some of us caregivers to accept —worrying that only we know what’s best for our loved ones, or that it’s easier to do things ourselves. It can feel impossible to imagine a babysitter or family member standing in for us. But not asking for help is a recipe for burnout. As the saying goes, you cannot pour from an empty cup. Don’t look at it as being selfish to put your needs ahead of your loved ones, reframe that thought to reinforcing your ability to put your best foot forward, for them.

So, how can you make time for yourself when you are also taking care of someone else?

1.????? Get your loved one enrolled in daily programs and activities. Be sure you are making the most of benefits and entitlements that can fund these programs. Adding in an autism friendly recreation or respite program will free up time to take care of yourself and handle your daily tasks uninterrupted. It helps to expand your autistic loved one’s horizons. It will also help to build a team of people who care for your child or sibling and want to see them succeed.

2.????? Ask for help with small, everyday tasks. The people around you may want to help but may not know how. Is there someone who can pick a few things up for you at the store? Or cook dinner for your family one night? Every little bit counts.

3.????? Talk to someone. Everyone needs someone to talk to. Letting someone know what you are going through and how you feel can be a major source of strength. Local support groups can help you connect with people who are going through similar experiences while giving you information about services and providers available in your area. Tips from other local caregivers are worth their weight in gold!

4.????? Don’t be afraid to take a break. Investing effort in arranging alternate care so you both can have some time apart is important. It may not be easy to plan for, but it’s always worth it in the long run. Even if it’s just reserving time for you to take a walk, this can be time well spent recharging. Other ideas can be going out to see a movie, going shopping or visiting a friend. Setting your autistic loved one up with time to pursue something they love at the same time can be enriching for them and help you avoid any feelings of guilt about taking a break. Time apart is just as important for them to have a break as it is for you. ?You will both feel renewed for the things you need to do when you get back.

There is no shame in taking time for yourself and prioritizing your own happiness. Being a caregiver is a huge part of our identity, but by prioritizing self-care, we will build the resilience and confidence needed to care for others.

#CaregiverAwarenessMonth #NationalFamilyCaregiverMonth #CaregiverMonth