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Meaningful Self-Care for Parents & Caregivers of Children with Exceptionalities

 

 

A man wearing black sunglasses and a blue baseball hat wraps an arm around his yellow lab as he gets a kiss.

 

 

It’s so important that parents and caregivers of loved ones with an exceptionality prioritize their own mental and physical health. Many studies have shown stress levels in parents of children with a disability are much higher than other parents. And parents with children with exceptionalities are more likely to be diagnosed with a mental health condition.

 

Being a parent of any child can come with a wide range of stresses and emotions. For those caring for a child with an exceptionality, those fears are compounded by a world that isn’t always accepting, inclusive and supportive of their child’s differences. This can require parents of children with exceptionalities needing to wear many hats, often at the same time, for an extended period. This can lead to extreme burnout.

 

There are, however, small things all of us can do to address our mental health in the moment, to try and mitigate the impact of burnout or even prevent it from happening.

 

 

Surround yourself with support

 

 

A woman in a green sweater and grey pants sits on a chair leaning over slightly. Someone out of frame reaches over to hold her hand in a comforting gesture.

 

 

Do you have a support network? If so, what does it look like, and who is in it? Not all support is created equal, and not all support can encompass all your needs.

 

If you’re not sure where to start, WRFN has a couple great options for parents and caregivers looking for a place to connect with others. First, there is A New Chapter (ANC). ANC is a peer-led group for parents and caregivers interested in preparing for the future of their youth/adult family member with a lifelong disability. We also offer a School Issues Support Group (runs from September to June) which also is a peer-led parent support group. This is a great opportunity to share questions, concerns and successful tips in a safe environment while learning from others.

 

There are also so many support groups in Waterloo Region who focus on very specific types of support. Here are just a few:

 

 

South Asian Wellness Group

 

  • The South Asian Wellness Group is a drop-In group every Thursday from 3 pm to 4:30 pm. With a South Asian Peer Facilitator fluent in Punjabi, Hindi and Urdu, this group focuses on coping, recovery, and fostering hope from a South Asian lens.
  • To join this group or if you have questions about it, please send an email to: [email protected]

Waterloo Wellington Down Syndrome Society (WWDSS)

 

  • The Mothers’ Connection group is a great opportunity for moms who have a child with Down syndrome (age 6 and under) to share celebrations, struggles, goals, practical information, and resources with one another. The program runs monthly, every second Wednesday at 1:30pm (currently online). For more information, please email [email protected]

Sawubona Africentric Circle of Support

 

  • Sawubona Africentric Circle of Support, formally known as The Black Parent & Caregiver Support Group (BPSG) was created to provide a safe space for families of African descent to come together to meet and connect, share resources, expertise, and needs, inspire and support one another through our unique and often challenging and isolating journey of raising Black children or supporting a sibling, of any age, with a disability.
  • For more details or to register, please contact [email protected]
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Parents for Children’s Mental Health -PCMH (Waterloo Chapter)

 

  • Located in communities across Ontario, PCMH chapters are made up of parents and caregivers on their own journey of supporting their child with mental health needs. Groups meet regularly providing parents and caregivers a safe and friendly place to connect with others, feel heard, and get help navigating the child and youth mental health system.

The Association of Parent Support Groups in Ontario

 

  • The Association of Parent Support Groups in Ontario (APSGO) is for parents struggling with the behavior of a child, youth, or young adult. APSGO support groups help parents/guardians develop effective strategies, set limits and boundaries, and build better relationships with their children.
  • Contact Steve Keczem at 519-888-1053 for more information

 

Practicing Mindfulness

 

 

A woman in a white t-shirt and beige pants sits crossed legged on a grey sofa. She has a mug of tea balanced on two hardcover books in front of her, and using a pillow to prop up and write in her journal.

 

 

In June, WRFN’s A New Chapter group had the pleasure of listening to a presentation from Jessie-Lynn MacDonald. Jessie-Lynn is a life coach who specializes in solution-focused and empowerment coaching. She joined ANC to give a presentation on self-care, called “Self Care: Beyond the Bubble Bath.”

 

Self-care is often packaged and sold to us as products that can help us reduce stress. And while there certainly are items that help us relax, Jessie-Lynn’s presentation was a reminder that self-care is so much more than a product that is marketed to us, like a bubble bath.

 

Jessie-Lynn shared many well-being check-ins we can use to help reduce our stress in the moment. Here are just a few that stood out:

 

  • Recognise the “goggles” or “lens” that you are looking through in the moment. The lens we look through affects how we see and interpret the world around us. The goggles/lens you are wearing impact the experience you have.
  • Think of your mood as an elevator that you are riding. Each floor is like a different mood, and we travel between those floors/moods throughout the day. Being aware of the floor you are on and knowing that it is temporary is helpful. Think of it as information about your current state of mind. 
  • Similarly, think of life as a series of moments. When things are difficult, think “this moment is difficult” rather than “this life is difficult.”
  • Using grounding techniques can help you break the pattern of repetitive negative thoughts. Grounding techniques draw your attention back into the present moment by focusing on tangible objects around you. Try thinking of a colour, and then keeping track of how often you see that colour as you go about your day. This is a great example to show that you will always see more of what you are focused on. The same applies to thoughts/feelings, both positive and negative.    
  • Spend time thinking of your best hopes, rather than ruminating on your worst fears. During particularly tough times think of times in the past when you faced challenges, what strengths and/or characteristics got you through those times?
  • Set beautiful boundaries. When you say “no” to someone else, you’re actually saying “yes” to yourself. Boundaries are not walls, rather they show people where the door is.

 

Take Care of Yourself

 

 

A woman stands behind her daughter at a kitchen counter. They are preparing a meal together.

 

 

What does it mean to take care of yourself? This is the advice we often get when we seek out mental health help. But it’s one of those things that can be easier said than done. However, there is a reason it’s so important, and why it’s repeated time after time. As the saying goes, ‘you cannot pour from an empty cup’. It is much more difficult to care for others when you are not feeling strong yourself.

 

Of course, strength is relative and can mean something different for each person. What is strength to you? Is it physical, mental, or both? If you’re not one who enjoys the gym, are you eating nutritious food to keep your body fueled? How are you feeling mentally? Are you prioritizing your own interests and desires?

 

Whenever you can, getting a good night’s sleep, drinking water, incorporating movement into your daily activities, and eating a balanced diet are all things you can do to build your physical strength. Energy is strength. But happiness and balance are strengths, too! So, try to find time for a purely pleasurable activity. What do you love? Whatever it is, do that…and do it with joy.

 

Why Small Steps Matter

 

 

Two young parents sit on their living room floor. Mom holds a young infant in her arms and dad is reading to her from a book.

 

 

It can be difficult for busy parents to treat burnout once it’s happened. It requires a lot of time, and commitment to rest. But we can take small steps before we get to the point of burnout. And it’s incredibly important that we do. We hear the lifejacket and the empty cup metaphor all the time – but there’s a reason that we do. We cannot begin to assist others before we have taken care of ourselves. Yes, parents and caregivers with children with exceptionalities are superheroes – selflessly putting their children first and continuing support even when they get tired. But we have 29 (and counting) Marvel movies that prove one important thing…sometimes even superheroes need back up.