Tough Terrain, Good Terrain
By Eli Norman, MA-CPSY, RCC
Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #9: The Mental Health Issue). Click here to download the full magazine.
Earlier this fall, our family went on a beautiful forest hike along the ocean in West Vancouver. My wife and I have three kids, including our youngest daughter who has Down syndrome. She is 12 years old, and lately she has been insisting that we always call her “Big Girl” (sometimes even instead of her name) because she is adamant that she is absolutely not a “Little Girl” anymore. Our family goes on forest hikes regularly, and Big Girl is a strong hiker who is capable of tackling some difficult trails. Quite often, when we encounter other people on the trail, Big Girl will greet them with a very friendly wave and say, “Hi there!” And then, after she thinks that they are out of earshot (which they never are), she loudly declares, “Look Dad… Those are our friends!” Our family loves this, of course, and I’m sure that it puts a smile on the faces of most of “our friends” as well.
However, on this particular hike, Big Girl was stuck in an awful mood for some reason. Instead of a warm greeting and a declaration of newfound friendship, the other hikers encountered a very grumpy Big Girl declaring, “This is MY trail! Get off!” And then, when she thought they were out of earshot (which they never were), she would make spitting noises. Apparently Big Girl did not get the memo that spitting is usually frowned upon during a pandemic.
My wife and I made every effort to figure out what was wrong and help Big Girl get to a better place. We tried several approaches, but nothing worked and we felt powerless. We felt badly for the other hikers, for our other two kids, and for our daughter. It was a difficult day.
In some ways, life with Big Girl is like a long hike. There is lots of good, beautiful terrain marked by good times (such as a warm greeting and newfound friends), but there is also lots of tough terrain marked by challenging times (such as getting stuck in a bad mood and demanding the trail all to herself).
I work in the field of mental health as a Registered Clinical Counsellor, and both my professional and personal experiences have taught me that all the tough terrain that comes with having a child who has a disability can pose significant challenges to the psychological and emotional well-being of parents. But I’m also aware that we sometimes find ourselves in good terrain that brings some unexpected benefits to our well-being. So let’s explore a bit of the tough terrain and a bit of the good terrain of mental health for parents of children with Down syndrome.
Tough Terrain: “What if…?” Thoughts
Many parents are all too familiar with negative thoughts that begin with “What if…?” This type of thinking is often connected to feelings of worry and anxiety. I’ve been having “What if…?” thoughts about Big Girl since the day she was born: “What if we’re not up to the challenge of parenting a child with Down syndrome?” “What if something goes wrong with her heart surgery? Or ear surgery? Or eye surgery?” “What if our other kids grow to resent Big Girl, or us, for all the difficulties that they’ve had to endure?” Just like falling dominoes, a first “What if…?” thought is usually followed by a second thought that tends to be worse, and then a third, and so on. It is very common to make the mistake of foreseeing negative outcomes as far more likely than they actually are. Some people find it helpful to try and practice “balanced thinking.” When you find yourself thinking, “What if things turn out badly (insert negative outcome here)?”, try and follow it up with the positive thought, “What if things turn out well (insert positive outcome here)?”
Good Terrain: Living in the Moment
Mindfulness has been a helpful focus in mental health in recent years. Mindfulness helps us to live in the moment and not spend so much time ruminating on what has happened in the past or worrying about what will happen in the future. Big Girl is usually fully engaged in experiencing whatever is going on in the present, and rarely seems to be caught up in worries about the past or the future. And she’s helped me getter better at this, too, as I attempt to resist living in my future or past worries, and instead try and join Big Girl in living in the moment whenever I can.
Tough Terrain: Extra Busy Schedule
Most parents in our society have busy and stressful lives as they juggle the schedules of themselves and their children. It seems like an ironic twist of fate that children with Down syndrome, who are required to be on time for so many extra appointments, are also the children who can be the most difficult to hurry up! This challenge is often caused by the evil twin of “Living in the Moment,” known as “Stuck in the Moment.” The extra appointments (often combined with the difficulty of transition times for many children with Down syndrome) results in extra stress for parents. It’s important to learn to manage our stress levels by engaging in healthy stress-relieving activities on a regular basis, as well as limiting the number of stressors in our lives when possible. In the midst of the busy-ness, we need to be sure to make time for ourselves. I know that this isn’t easy, but if we neglect ourselves, then we may start to feel overwhelmed and burnt out, and this will make the tough terrain even tougher.
Good Terrain: Ol’ Fashioned Laughter
Some say that laughter is the best medicine, and I believe that there is some truth to this. Big Girl has a great sense of humour and loves to be ridiculously silly, and she especially loves it when other family members join her in the silliness. I think that being silly and laughing is very beneficial for our mental health, and Big Girl has provided our family with countless moments of medicinal laughter.
Tough Terrain: “Should-ing”
The word “should” is quite a problematic word for many people, and I think it can be extra difficult for parents of children with a disability. I often find myself discouraged by thoughts such as, “We should be working harder to connect Big Girl with more of her peers,” or, “We should be working harder to let Big Girl do more things for herself more often, instead of taking the easier road of doing things for her.” “Shoulds” are often good aspirations, but parents can only do so much, and the list of “shoulds” can sometimes feel endless for parents of children with Down syndrome. Too much “should-ing on yourself” is connected to feelings of guilt, and even depression. Try and resist setting unrealistic expectations for yourself, and give yourself compassion and forgiveness as you do your best in this very difficult job.
Good Terrain: Celebration & Gratitude
Gratitude has been connected to positive psychological well-being. Big Girl loves to celebrate the things that she is feeling grateful for. If there is something that has made her happy, then she wants everyone to know it. Big Girl gets very excited about birthdays, holidays, family movie night, and any other occasion when we have fun together as a family. For instance, in the beginning of October, Big Girl decided that my birthday is fast approaching, and she now wishes me an excited “Happy Birthday, Dad!” a few times a week. We’ll see if she keeps this up until my actual birthday… which isn’t until February. Big Girl’s enthusiasm about good times is contagious, and I know that she makes these family moments much more special for all of us. She reminds me that we have much to celebrate as a family, and this helps me practice more gratitude in my life.
Parents of children with Down syndrome face many joys and many challenges as they encounter the good terrain and the tough terrain that comes with having a child with a disability. If you are one of those parents, then I hope you are able to benefit from travelling through many moments of beautiful terrain with your child. And when you find yourself overwhelmed by the tough terrain, then I encourage you to reach out for the support that you need from loved ones, professionals, and organizations such as the Down Syndrome Resource Foundation. Best wishes on your journey.