56 A Matter of Perspective

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Lisa:

Hi everybody! If you listened to last week’s episode, called negative Nelly, you’ll be relieved to hear that THIS episode is more upbeat and positive. For the most part. Last week I let some of the negativity rip and as much as I don’t love unleashing more negative vibes out into the worlds, I feel like sharing some of the negative aspects of our lives and in particular, some of the difficult parts of parenting a person with disabilities, is important.

Dwelling on it or dare I say, whining about it, isn’t helpful. But having a conversation about it all and explaining why it’s hard and how we might feel about it, THAT serves a purpose by helping others who might be struggling with similar things. Understanding that it’s OK to be scared or uncertain helps normalize those feelings. And it can remind people that it’s not permanent. Situations change and feeling ebb and flow.

I don’t know where I would be, mentally, if I didn’t believe that my feelings and fears are valid. And that it won’t always feel this way.

But like I said, festering in it is neither healthy or productive. And so this episode is about a strategy I’ve been using lately that really helps me to be able to move forward. It’s a matter of perspective. So, let’s get into it.

Intro.

Before we get started, to clarify, there are absolutely some things that will always be negative. Not even negative, more like terrifyingly nightmarish and incomprehensible. Like the war in Ukraine. Like the completely fucked up abortion laws in the US and like kids with guns. Things like these are impossible to wrap our minds around. There is no amount of positive thinking or looking at them from a different perspective that can make them less terrible. There is nothing we can do to change the horrific facts.

That’s not to say that we are helpless and hopeless though. We DO have the power to fight and stand up against injustice and refuse to be silenced and to hold the monsters accountable and to teach our kids what is right and to try our best to change things. These horrible things.

I’m still trying to process a lot of that. And to figure out how much to let in and how much to shut out for the sake of self preservation. Because it’s a balance. It’s a balance being a good and a strong person who is trying to set things right and trying to protect and help other people, but also protecting our fragile hearts and aiming our energies towards the things we are capable of achieving. It’s tough.

But…this episode is a smaller side branch of that. It’s more about the annoyances the legitimately dark struggles that we encounter in life every day. And in particular, from my personal experience, how we can reframe our thoughts and feelings as parents of disabled kids. Because, parenting isn’t easy. And parenting a child who may have additional medical or physical or intellectual needs, adds another level of worry to parents. We can absolutely live with it. It’s manageable. But for how long and at what cost?

As you may have heard in the last episode Avery is experiencing some medical concerns that have been weighing heavily on us. I’m not sleeping well. I’m tired and distracted all the time. I spend about 45 minutes of every hour a day thinking about Avery and going over things in my mind.

A lot of those thoughts are necessary. I’m planning and asking questions and doing research and figuring stuff out. In my opinion, it’s directing my energy in a positive and proactive direction.

But it’s the rest of my thoughts. The catastrophizIng. It’s the getting stuck in a negative thought loop and the ruminating and the ringing of hands. Not to mention the…just feeling sorry for myself. And negative. It’s unproductive and it’s unhealthy.

It’s the negative thoughts that keep us stuck and impede upon our contentment and happiness.

I’m sure you’ve felt this at some point. It’s so easy to get stuck isn’t it? But we don’t have to be hopelessly stuck. And this is where perspective comes in.

For me, actively and deliberately changing my perspective can be as simple as going for a walk and physically changing my view. That almost always improves my mood and my attitude.

But I’m finding lately that the most impactful action is changing the language I use—out loud and in my head.

The game changer lingo for me is “I have to vs I get to..”

So like, “I have to make dinner tonight.” Fock. Is it just me or are you as tired as I am of making meals and meals and meals? Like every day. It’s never ending.

That’s a challenge for me and it’s negative.

So if I say, “I get to make dinner tonight…” That leads to remember how lucky am I to have the time to cook a meal. How fortunate am I that my kids are great eaters and they appreciate what I make for them. My husband too. And how damn lucky am I to have healthy food to even make??

This sounds simplistic, but just by reframing this loathsome task in this way, my attitude shifts and suddenly making dinner isn’t as negative. It become more of a privilege. Would I rather order in? Ya. Obviously. But by changing my perspective that way, suddenly a loathsome task becomes less taxing.

We may not have to power to control most of the circumstances around us, but we do have the power to control the way we look at things, how we frame them in our minds, and in turn, how we maybe react to and feel about things.

It isn’t easy to change your perspective and to remain positive. It’s way easier to focus on the negative. That’s a scientific fact. Did you know it can take up to 6 positive thoughts to counteract just one negative thought? It’s a lot of effort to flip the switch.

So Johnny Depp, who we love, who as you’ve probably seen splashed all the internet has been through hell. Talk about flipping the switch–he went from being perceived as the villain to being acknowledged as anything but. That court case is a hotness. But I digress. I saw this quote he made as Captain Jack Sparrow.

He said, “It isn’t easy to change your perspective and to remain positive. It’s way easier to focus on the negative. That’s a scientific fact. Did you know it can take up to 6 positive thoughts to counteract just one negative thought? It’s a lot of effort to flip the switch. ” Like what? That’s so spot on. I need to to repeat that..

“The problem is not the problem. Your attitude about the problem is the problem.”

So at the core, it’s our perception and our reaction to that perception that creates our reality. The reality which is essentially our life. We have the power to create and mold our life.

Whoah. I just blew my own mind. I swear I’m not high. Speaking of which, in an attempt at some mindful self-care last night took the dog for a walk and played a game called, “Is that a skunk or is somebody smoking weed?” I think it was a skunk. I also played a round of “Is that a dog in the distance or is it a coyote?” I’m not a fan of that game. They coyotes in our neighbourhood are freaking me out. I’m trying to change my perspective on that but little dogs are being eaten left right and centre. Whenever I walk Avery’s little dog, Ruby, I kind of feel like I’m basically dragging bait around the block.

Anyway. It’s interesting how our perspective can do a complete 360 when you look at things from another angle.

Like, a few weeks ago a young guy deliberately crashed a stolen car through the window at our pharmacy. I’m assuming he was trying to get to the drugs? And when I pulled up and parked in front of the smashed in window, I felt fear and anger mostly. It pissed me off that somebody would do something like that. Somebody could’ve been killed. And then I went in to pick up Avery‘s prescription and had a little chat with my favourite pharmacist. And I was going off saying oh my God can you believe that somebody would do something like that? And she said I feel so sorry for him. And I was like what? I was looking at it from the perspective of this guy being the villain. And she was like, yeah. Can you imagine being so desperate in your life that you would resort to something so extreme?

She was looking at him as a victim of whatever circumstances in life made him feel like he had no choice but to do something like that.

And as I thought about it I I added, yes. You’re right. And his poor parents. He’s somebody’s child.

I’m obviously not excusing his actions. What he did was wrong. But I left feeling empathy for him instead of anger. It was just a simple change of perspective, from judgement to looking at him through Lens of a parent.

Our lives as parents and in particular, parents of kids with disabilities, can be highly influenced by perspective. I’ve heard it all from other people… strangers and people who know us. Statements like… “I don’t know how you do it” and “Your life is so harrrrrd. I feel so bad for you.” Comments like these seep into our minds and cloud our thinking and how we’re feeling about what is true versus what is perceived to be true.

And we do this to ourselves. We accept limiting beliefs about our situation and that can become our reality.

So, to other parents like us, who are living this life, my suggestion, take it for what it’s worth because full disclosure, I’m working on this myself and I’m certainly not there yet but… when you catch yourself feeling negative or hopeless or frustrated or however you’re feeling about your role as a disability parent, stop and really try to reframe or shift your thinking.

It might be really difficult depending on your situation.
And I think it definitely takes practise.
I’m have to keep at it. Wait, I GET to keep at it. And I GET to work on improving my thinking. I GET to take control of my reality and my life.

Anyway…

I like hands on, tangible strategies. So here a things you can do to hopefully turn your perspective from a negative view to more positive one.

1. Manage the negativity you allow into your life—people as well as the content you are consuming. We have a choice of what we’ll accept.
2. Tell yourself, like a little mantra, while you’re IN IT, whatever hard thing it is, that this tricky bit isn’t going to last forever. Whatever it is, it’s temporary. I try to remind myself of that whenever I’m freaking out about something Avery is going through. That we’ll get through it. We always do. The issue will resolve or we’ll find a way to manage it.
3. Find a lesson or something good from the struggle. Like, “That thing really sucked. It was hard. But I got through it. Or, it turned out okay. Or, now I know what to expect so next time I’ll be ready. Or, my instincts were right about that. My gut is super smart.” Or whatever it is. There are always little take aways and lessons. We just have to see them.
4. There’s likely a positive in there somewhere. It might be minuscule and it might be hard to find. But it’s probably there. Look for it. Just, try to find something, some nugget of gratitude in your day. It can be something small and totally frivolous. Like, I’m grateful when I’m tired and just want to zone out and I turn on Netflix and there’s a new episodes of my favourite show. Or, when I’m peckish and I open the fridge and there’s a tiny sliver of pie left-over with my name on it. Or I open the dishwasher thinking it’s full but somebody in my house has emptied it. Or when I find something, unexpected that I thought was lost. Usually my sunglasses or an earring or something. I wear tiny diamond studs pretty much every day and then one morning after the shower, I got out and I was only wearing one. I assumed the other one fell out and went down the drain. I was so upset. And then the next day, I was walking into the house and I saw something glint in the sun on the driveway and it was my earring! On the driveway. No idea how it got there but I felt grateful for it. Anyway, those are just some random examples of tiny little happy things that make me feel grateful for the little gifts from the universe.
5. Okay, finally, and the biggest one. One that I am really focussed on for now. I may not be able to change the craptastic circumstances I’m experiencing at whatever moment, but I can always change my perspective about it. And if I can do that, if I can bend my brain, it’ll just make whatever I’m dealing with, a little easier. “Change your thoughts and you change your world.” That’s not me. That’s a quote from Norman Vincent Peale. I don’t know who is or was but…Norm nailed it!

So back to parenting. Parenting a child with disabilities can be hard. And it can be difficult not to fall into the trap of believing that disabled folks’ lives are tragic or sad in some way or just damn difficult or whatever…

Especially on the scary days or the sad days. And that’s when we need to look for the benefits. The positives. Because not only are they there, they’re huge.

For the people in the back—my disabled child is amazing. I am so grateful to be her mom. I am lucky to be able to share her with the world and to help educate people about chromosome disorders and epilepsy ands speech and language and learning disorders and all the things. I feel happy when I’m with her. I feel proud of how kind she is. How funny she is. And how she makes people feel important and included. And I feel proud of her dad and brother and I and our family and close friends, for how well we all work together to make sure Avery feels loved and safe and supported. There’s more. I have a lot of feelings. But you get the gist.

I’m going to end with this because I think it just ties everything together so perfectly.

I found this article online called, “Strength in Diversity: Positive Impacts of Children with Disabilities.” I was surprised and delighted actually because, keeping it real here, usually when you google stuff about disabled kids and their family dynamic, it’s not often a very positive outlook or perspective. So this was great. And it’s something I think everyone should read. So, I’ll put the link to the full article in the show notes and on our website. But I thought I’d share a few highlights that stood out for me…

This was put together by Michelle Lodewyks who is an Instructor in the Disability and Community Support Program at Red River College as well as a graduate of the Master’s Program in Disability Studies at the University of Manitoba. The article was published in 2015 through the Vanier Institute of the Family.

The study explored the experiences of families raising children with disabilities, focusing on the perceived negative impact of the disability on the family. Families are commonly viewed as “victims” who face excessive caregiving demands, emotional distress, physical and/or financial burdens and interpersonal difficulties, while the children are portrayed primarily as sources of stress and anguish.
This tragedy dialogue supports an assumption that families with children with disabilities experience “chronic sorrow” and perpetuates the perception of disability as something to be avoided at all costs. These perceptions have a major influence on today’s assumptions about – and reactions to – disability, including how professionals respond to children with disabilities and how society views and responds to children at birth. Consequently, the general public tends to overlook many positive impacts and meaningful contributions that children with disabilities make within their families, communities and society in general.

Yes! Mic drop.

In order to explore the positive impact disability can have within families, a qualitative, interview-based study was performed to add narrative depth to the research. All of the parents and children interviewed identified a variety of positive effects the children have had on their families and contributions the children have made to family life.
The most unsurprising discovery was the affirmation that a child with a disability can have some of the same positive effects on their families and make some of the same contributions as any other child. Highlighting these similarities is critical, given the tendency for children with disabilities to be distinguished from other children and viewed as less likely to affect their families in positive ways. Yet perhaps even more meaningful was the discovery that children with disabilities can also have unique positive effects and make unique contributions to families and family life.
Yessss!

Some parents in the study reported having:
-an ability to more readily recognize and appreciate the value, potential and strengths of a person with a disability as a result of their parenting experiences.
-experiences that left them with a greater acceptance of diversity.
-a new perspective (there’ the P word) on how to help individuals with disabilities and how not to place limits on people or tell them what they can or cannot do, but instead help them strive for self-improvement.
For siblings, they reported that increased exposure to disability in their family environment made them more comfortable around other children with a disability, and they discovered a new-found enthusiasm for getting to know people with disabilities in general.

The study found that children with a disability often exceeded expectations and did not necessarily comply with what is typical for their diagnoses, often being nothing close to the worst-case scenarios predicted by some doctors.

Uh ya. I can attest to that. Avery’s doctors early on gave us the worst case scenario for what her life would look like. And it was bad. If we has allowed their predictions to form our perspective and plans for her, how miserable would our early days with Avery have been? We worried of course, but for the most part, we took things day by day and did’t place limitations on her. We followed her lead.

All of the parents in the study perceived themselves as having acquired new or enhanced positive character attributes as a result of raising a child with a disability. Attribute changes included family members learning to open their hearts and to be more loving, warm, caring, creative, balanced, gentle, calm, outgoing, responsible, independent and less selfish.
Several parents commented that their child made them an overall “better person,” “better parent” or made other family members “better people.”
And all of the parents in the study reported positive emotions their children have fostered in them. A sense of pride was the most common.

One mother insisted she derives more excitement from the little things in life than many other people and that she “celebrate[s] things that other people don’t even think about celebrating” because of her daughter.

Many parents talked about having met people, gained friendships and made new connections thanks to their child. While any child can expand a family’s social network, certain examples were attributed to the family’s particular circumstances. For one couple, connecting themselves to other families through the creation of a support network for parents with similar experiences has been valuable, as they have been able to offer support to other parents who have approached them for advice and guidance.

Despite one parent noting that having a child with a disability may make some families “fall apart,” many parents perceived that their child strengthened their marriage or made the parents and/or family stronger.

Parents shared that their experiences are “not all rosy” – that there have been “challenges,” “struggles,” “obstacles” and “tough times.” One parent admitted her struggles adjusting to her child’s disability had less to do with her child than with other people’s preconceptions.

The sorrow parents experience largely stems from having to deal with recurring messages of negativity and hopelessness from other people, such as professionals, the health system, other family members and friends. Therefore, if society holds negative attitudes toward disability, negativity can be transmitted to the family.

So, learning from families who view their circumstances in a positive light, makes these perceptions more readily available to the general public and coming to view the experience of raising a child with a disability as one that is not necessarily tragic – but rather enriching and rewarding – can have a variety of positive implications.

The findings in this study can provide medical professionals with practical information to share with families when a new diagnosis is given. These findings might also benefit other parents currently raising a child with a disability by encouraging them to focus more closely on what their child adds to their life.

It’s important to note that the study is not denying the existence of challenges and negative family experiences. Sharing these findings is also not suggesting that everything will automatically improve for families who struggle raising a child with a disability. But I guess the message I found here is that by focusing on all the positives, your perspective will swing around to a new and happier perspective.

Back to Jack Sparrow… “The problem is not the problem. Your attitude about the problem is the problem.”

Final thought from the study… “If more families see their experiences in a positive light, perhaps they can assist in altering widespread perceptions of the impact of disability, provide support to new parents and relieve some of the fear and anxiety around the idea of raising a child with a disability. In doing so, the hope is that a more affirmative way of viewing disability could be promoted.”
Isn’t that such a great study? Like, it hits and highlights so many of the points that we parents of beautiful, important, valuable disabled kids are trying to make.”

I GET to be Avery’s mom. And I GET to share her with you here on this podcast. How lucky am I?

Thanks for tuning in. Like I said, I’ll link this study in the show notes and on our website as well.
I hope this episode helped change your perspective about how impactful it can feel to change your perspective and create the happy healthy life you deserve.

Okay, Avery and I saw this joke as a meme on Instagram. We tried to get Kevin to meow on command for the punchline but cats don’t play that way…

Avery: How does Kevin the cat like his steak? Rarrrrrrrre.