Caregiver Respite: Why it's so Important and How to Access Services

"Caregiving often calls us to lean into love we didn't know possible."

-Tia Walker, author of The Inspired Caregiver

For many of us raising an autistic child, the physical, mental and emotional exhaustion that comes with 24/7 caregiving can be all-consuming. It can bring great happiness, but it can also weigh us down.  Worsening the exhaustion is stress, frustration, anxiety, depression, fear, resentment and anger at times. Especially during the summer months when our children are not in a structured school environment; the demands can be debilitating and test our patience. I cannot tell you how many days I've dreamed of running away or hiding.

Caregiver burnout, also called Caregiver Syndrome, is real. I've experienced it many times. As I write in Hold on Tight, "I still have days when I am so exhausted, so drained of energy, that all I want to do is curl up in a hole and disappear. There is little relaxation."

What is caregiver respite?

Respite provides temporary relief from the caregiving burden. It gives parents and their autistic children short-term space from one another, allowing family members to get a much-needed break from the demands and responsibilities placed on them. It can take the form of hobbies, sports, chores or short vacations and can involve self-care, whether getting your hair done, working out in the gym, taking a nap or booking a relaxing massage. It also has the additional benefit of allowing family members and their autistic children to participate in enjoyable activities and engage with others.

Caregiver respite is a need, not a want. It is essential to our health and well-being.

How can I obtain caregiver respite services?

Those of you with family members or friends willing to step in and give you a break as needed are indeed fortunate. For the rest of us, autism service providers like Kerry's Place Autism Services, Canada's largest autism services provider, can provide critical relief.

Respite can occur both in and out of the home in community-based settings, including support through social groups, camps, and other recreational opportunities.

Kerry's Place, for example, has a wide range of respite options for children, youth and adults. Kelly West, Vice-President, Community Services, explains that the primary objective is to provide a well-deserved break for caregivers and families. Children and adults participate in interactive, meaningful recreational and social supports that are individualized to each person's unique abilities and interests.

Ms. West adds: "Caregiver respite looks different for each family, depending on their specific needs.  The first step is to develop a respite plan with an Autism Consultant and the other service providers linked to the family."

To create the plan, caregivers need to provide information such as:

• Daily routines
• Preferred activities (i.e., puzzles, swimming, baseball)
• Sensory sensitivities
• Strengths, needs and challenges
• Medications
• Any other information important for the respite provider to know

In-home respite allows the child to stay in their most familiar environment. These breaks generally average between one and five hours weekly, although some families access respite support every day after school, in the evenings or on weekends. Outside the home, many resource and community centres take children after school, during and on summer breaks. Kerry's Place also has many respite homes where individuals can stay after school, overnight, over the weekend or for up to two weeks. Social groups and seasonal camps (i.e., Summer, March break and Winter break) focus on developing specific skills and provide the opportunity to learn and build relationships.

Ms. West emphasizes that respite should be unique to each family's needs with a plan that supports the entire family, not just the autistic child. She has observed many children returning year after year to summer camp with significant gains. Older children and their parents often benefit when the child spends weekends at a respite home, among other supports.

Many caregivers thank Kerry's Place for allowing them to focus on their other children and themselves while reconnecting with others in their circle.

Is caregiver respite free?

Costs vary across jurisdictions. In Ontario, for example, respite is often funded by the Ministry of Children, Community and Social Services through programs such as Special Services at Home (SSAH) and Passport, among other funded service opportunities. Respite can also be arranged and purchased privately.

It seems obvious, but caregivers must stay physically, mentally and emotionally healthy.  Healthy people have more energy, can better control stress, generally feel better about themselves, and are better able to build emotional reserves. If we are not healthy, we cannot care for our children, much less ourselves.  And respite is an essential part of taking care of ourselves.