Misericordia Logo

Misericordia Logo

Find It Fast Panel

Upcoming Events

Admissions FAQ's

Autism Center Respite Information

autism center logo
autism collaborative centers of excellence logo

Welcome to the Misericordia University
Autism Center/ACCE Hub
Respite Information Page


RECHARGE    RELAX    REST    REVITALIZE

Here you will find updates on respite resources and activities that might interest you and your family. Our first entry is on the topic of what is respite and why it is important for the entire family!

What is Respite and Why is Respite Important?

What is respite?

Respite is a short period of time devoted to oneself without worrying or engaging in the care of a task or tasks of another person which are often difficult or time consuming. The time devoted to oneself should assist in finding inner relief or rest.  It is important to take time for oneself when assisting with a family members’ care on a regular, if not daily, basis. Oftentimes, caregivers, of any age, are unlikely to think of their own health and wellbeing while putting the care of another at the forefront. Research into the care of caregivers has provided indications that caregivers frequently report that they may suffer from:

  • Lack of adequate sleep
  • Poor eating habits
  • Limited time, if any, to exercise
  • Unable to adequately rest when ill
  • Postponement of or cancelling of doctors’ appointments for themselves

Other research has identified that primary caregivers are also at an increased for depression and excessive use of alcohol, tobacco, and other drugs. Caregiving is and can be a very rewarding experience but at the same time can be very costly to an individuals’ health and well- being. There is often stress and anxiety present, not only in the direct care of the family member also but in the allowing others to assist in the care of an individual in need.

So why is it then so important for the caregiver to take care of him/herself?

Because respite is beneficial to oneself, to the individual with autism and to the entire family.  Being healthy and restful, with a positive mindset helps to balance out the challenges that can be faced on a sometimes, daily basis. So, respite, which allows a period of time that a caregiver can freely allow him/herself to relax, should be a required part of caregiving!

What can be considered respite?

Anything that helps a person to find individual time for him/herself. It also specifically should involve a definitive time away from caregiving! If this leads to feelings of guilt, it is perfectly fine to start off with a short period of respite, such as half an hour and working up to a longer period of time. Not only is it healthy for the caretaker but also healthy for an individual with autism to understand that they can function without the presence of one of their primary caregivers/loved one. And, as individuals with autism prefer to adhere to routines, it is best to start slowly but it is very important that time apart from one another becomes a common occurrence, or routine so as to allow your child to lead a more independent life in the future. Be prepared for some resistance in the very beginning as some difficult behavior may occur but it is very important to continue with the plan and eventually, over a few days of consistent time apart, acceptance of the new routine should be accepted.

Sources of respite:

Even the smallest change in one’s daily routine that enables rest and or relaxation, can be considered respite as long as it is about taking time away from one’s obligations to another. So lighting a candle and sitting down to read or listen to music for a half an hour can be considered respite, Running, walking, baking, or watching TV is also considered respite! Taking time to rejuvenate oneself is essential and sometimes sharing or learning with others can also be a very rewarding and rejuvenating time as well.

Tips regarding respite:

Sometimes it is helpful to set goals for oneself if it is too difficult to begin the process. Breaking goals down into smaller steps is often helpful in achieving a goal. So, it is important to define the goal and then break it down by making an action plan and a timeline. Then get started!

Here is an idea of a goal and then a series of steps in an action plan:

Goal: Develop healthy habits.

Possible action steps:

  • Make an appointment for a physical checkup.
  • Take a half-hour break once during the week.
  • Walk three times a week for 10 minutes.

Remember, the plan is flexible to reach the main goal and the main goal can always be tweaked as well; nothing is set in stone! Start slowly, be kind to yourself, and you and your family will see a positive change!

Shultz, Richard and Beach, Scott (1999). Caregiving as A Risk for Mortality: The Caregiver Health Effects Study. JAMA, December 15, 1999, vol. 282, No. 23.

RESOURCES:

Northeastern PA Health Care Quality Unit (HCQU)

The United Way provides assistance to fill out necessary transition forms.

21 and able, is an initiative of the United Way and is a transition planning resource for families of individuals with autism

PAAutism Parents and Caregivers 

Pennsylvania Training and Technical Assistance Network (PaTTAN) provides training to lay persons and professionals, assistive technology knowledge and understanding of resources that parents can ask for when preparing for IEP and transition planning meetings: PaTTAN's Assistive Technology webpage.

View PaTTAN's publication Top Five Reasons Schools Need to Engage Parents.

Autism Speaks - about Thanksgiving with a child with Autism.


Top Tips for Managing Caregiver Stress

caregiver doing stress relief

The feelings of tension you may feel as a caregiver can frustrate and exhaust you. Fortunately, there are plenty of helpful techniques you can use to manage your stress. We took to social media and got feedback from real caregivers on how they manage the pressure. Here are our favorite tips from fellow caregivers and thought leaders on how to deal with caregiver stress:

1. Complete Small Tasks to Regain Control

When dealing with another person’s fluctuating health, it’s totally normal to feel overwhelmed and out of control. If this describes you, try this caregiver’s simple, helpful tip:

“Doing laundry was soothing for me. If I was feeling overwhelmed, I’d tell myself that I could do that one thing. It was helpful to make order out of chaos. I’d feel as though I had control over something, and I felt great satisfaction out of seeing neatly folded piles of laundry before I threw myself back into the fray.”

2. Eat Right

healthy food

What we put into our bodies is what we get out of them. Proper nutrition is crucial self-care that can be left to the wayside when under a lot of stress. However, stressful times are when your body needs healthy fuel the most. Avoid skipping meals, snacks or overindulging in alcohol. Instead, set aside regular times each day to enjoy a balanced breakfast, lunch, snack and dinner. For more ideas, check out this list of stress-relieving foods which include tea, salmon and (yay!) dark chocolate.

3. Get Enough Sleep

When your mind is racing around a track with a million things to do on it, it’s only natural that your sleep may suffer. But you can’t avoid it: your body and brain unquestionably need time to recharge. Amazing things happen when you sleep, like muscle relaxation, tissue growth and repair and energy restoration. How well you sleep affects nearly every aspect of what happens in your waking hours, so make sure to get those quality ZZZs. Aim for 7-9 hours each night, preferably at consistent times.

4. Exercise

first person point of view from a bike

If you are physically capable, getting your body moving and your blood pumping is an almost guaranteed way to relieve tension. Physical activity pumps up your “feel-good” endorphins and refocuses your mind on your body’s movements, releasing stress and improving your mood. Physically, exercise helps maintain a healthy weight and can even regulate your sleep cycle by making it easier to fall (and stay) asleep.

Virtually any physical activity works: walking, jogging, gardening, housecleaning, biking, swimming or anything else that gets you moving. Find time, even if it means asking someone else to provide care while you take a break.

5. Try Meditation

Meditation creates a sense of calm, peace and balance that benefits both mind and body, and it encourages the use of breathing to get through stress. You’ll focus your attention on the sensations you experience, squeezing out anxious thoughts. The best part? You can meditate almost anywhere, from a doctor’s office to a bus ride.

6. Do a Little Coloring (Really!)

Think coloring books are just for kids? Think again. Adult coloring books have become an increasingly popular way to decrease stress through mindfulness, the act of focusing on being in the present moment. Added bonus: they’re super portable!

7. Have a Healthy Dose of Laughter

child laughing in a yard

Did you know that laughter lightens your emotional load and actually causes physical changes in your body? Laughter enhances your oxygen intake, relieves mental stress and soothes physical tension. Try switching up the nightly news with a favorite comedian’s stand-up or a classic rom-com or call your funniest friend. And speaking of friends…

8. Get Social

Spending quality time with friends and family has long been a stress relief tactic used across many cultures and time periods. When you spend time with your social circle, you experience better mental health, a stronger immune system and can even lower your risk of dementia!

If you don’t have much time to meet up out of the house, or your friends and family are long-distance, don’t worry: video chatting and phone calls can provide many of the same positive effects as face-to-face socializing.

9. Start Journaling

Putting your thoughts and feelings into written words can be a good release for pent-up emotions. Writing often provides perspective that thinking, or even talking, cannot always give. In addition to venting out your worries, journaling is also a good place to list out all the positives in your life that you’re grateful for.

P.S. If you’re looking for a place to start, every CaringBridge site comes complete with a ready-to-use Journal feature. Our online journal allows you to choose from a variety of privacy options, whether you choose to publicly share your health journey or keep a totally private diary.

10. Get a Pet

pet bunny

Therapy animals are around for a reason. Our favorite furry friends provide many stress-relieving benefits when they cuddle us, learn a new trick or simply just look adorable. Whether you prefer a dog, cat, parakeet or fish, owning and loving a pet can be enormously beneficial. And if you’re thinking that you can’t take care of yet another thing, not to fear: these low-maintenance pets might change your mind.

11. Just Say ‘No’

Yep, you read that right. You are more than allowed to turn requests down if you feel that you’re getting overwhelmed with responsibilities and places you just have to be. When you say ‘no’ to adding another “to-do” on your list, you’re opening up an opportunity to have very important time for yourself. You are a priority, too!

12. Reclaim Your Identity

Spending time on your passions will help remind you that you are more than a caregiver. Try to take time at least once a day to engage in an activity that makes you feel most like yourself outside of your caregiving role. It can feel like you don’t even have time to wash your face at the end of a long day, much less take 30 minutes to yourself. But there are opportunities to carve out you-time every single day. If you leave for work, use your lunch hour to go outside and read a book or magazine. If you stay home, take time to play your favorite music or make dinnertime exciting by cooking a fun, new recipe. It’s the little things that make us who we are and it’s important not to forget about them.

13. Prioritize Your Own Medical Needs

back of doctor's head

Caregivers still have regular checkups and dentist appointments, just like anyone else. It can be easy to get so caught up in the medical treatment of your loved one that you forget that you actually share some of the same needs. Take note of any appointments you’ve missed or may need in the next few months, and if necessary, start enlisting help so that you can make your appointments without a hitch.

Also, don’t forget about therapy. It might not be for everyone, but therapy is a tool that’s definitely worth considering. Many therapists specialize in the managing and relieving of stress through means such as Progressive Relaxation Training, mindfulness-based techniques and more. To find out about the different types of therapy and which one might be right for you, talk to your doctor about your symptoms and discuss getting a referral.

14. Ask for (and Accept) Help

It’s ironic that the people who spend so much of their time and energy helping others often find it incredibly difficult to accept help themselves. Here’s what a couple caregivers said helped them with this:

“Being open to help. Recognizing I couldn’t do everything, and letting others share their gifts of time, meals and service to us. And finding the courage in myself to be specific in telling them what was needed.”

“Accepting help when it is offered! If you say no too many times, people will stop offering. Don’t feel guilty for taking some time for yourself. If you burn out, things will not be good for all involved!”

Some other ideas on this: Make a to-do list and recruit others to pitch in to help with meal planning, trips to the pharmacy, walking the dog, watering plants… everything that goes with your caregiver role.