For parents of disabled kids, one of life's biggest struggles comes from outside the home.
Everyone knows being a parent is hard. But parenting a disabled child carries challenges you don't expect.
Many of us in this world are juggling multiple tasks at one time. On any given day, we are nurses, therapists, advocates, teachers, personal care assistants, and administrative assistants managing their endless paperwork.
When I had my son, I expected to face these day-to-day difficulties of parenting a disabled child. But the challenge I wasn't expecting came from outside the home.
For years, I have always wondered why friends seem to drop like flies from my life. What am I doing wrong? Why do I struggle making and keeping friends?
[rebelmouse-image 19533644 dam="1" original_size="2681x2361" caption="Photo by Jordan Whitt/Unsplash." expand=1]Photo by Jordan Whitt/Unsplash.
For some parents of disabled children, friendships can feel almost impossible to maintain.
As our children grow and we move deeper into the trenches of childhood, we sometimes find that our lives are very isolated from the world around us. We turn on our laptops, tablets, or phones and see pictures of other parents at social events, throwing elaborate parties or cheering on their kids at sports. These moments can make our stomachs sink, our hearts hurt, and remind us just how isolated our lives have become.
We are maxed out with the daily care of our children, and every aspect of our lives is wrapped up in the complications and extra fighting needed to raise our children successfully.
Most of us are trying to balance the needs of our children, and their care is so extensive we are moving from one crisis to the next on a daily basis. My son demands 100% of my attention, and due to the complexity of his care, all of my energy is focused on his treatments, appointments, researching, and managing my emotions about the toll his care takes on my psyche.
[rebelmouse-image 19533647 dam="1" original_size="5678x3884" caption="Photo by Cristian Newman/Unsplash." expand=1]Photo by Cristian Newman/Unsplash.
The fact is, I’m not a very good friend.
I don’t have a lot of free time. My schedule is always changing, and it is impossible for me to keep plans. My son’s care wears me out physically and emotionally. Due to the high-stress life I lead, I am short of patience, and I can get easily annoyed by people. I say things I don’t mean out of frustration, and I take well-meaning comments too personally.
On the rare opportunity I can stick to my plans, the thought of socializing leaves me with a deep sense of anxiety. I know that I will have to talk about my life, and talking about my life makes me feel exhausted. When I have a chance to get away from my house, the last thing I want to do is talk about what is going on in my life.
Frequently the events I attend are in larger groups, and the conversation is small talk related to raising children. Parents want to talk about their children, and for many, it’s a way to bond. They commiserate about the woes of parenting. Yet, I always feel like an outsider because I don’t relate to their stories, and I have little of my own to contribute. I’m often lost in my thoughts, completely preoccupied with what I need to do for my son.
[rebelmouse-image 19533648 dam="1" original_size="5616x3744" caption="Photo by Megan Lewis/Unsplash." expand=1]Photo by Megan Lewis/Unsplash.
I might be near people, but I’m a million miles away.
I listen to amazing stories about vacations, outings, and all the milestones that their children have accomplished. When I hear others having wonderful lives full of happy memories, I find that I sink further away from the conversation. I nod my head and smile, but inside I’m screaming because our lives are so different and it feels so unfair. My son hasn’t met those milestones, we never go on vacation, and our lives are spent moving from one office to another for appointments.
If I do speak, I know that I will have to share our journey. Talking to anyone about our life has a way of making me feel incredibly anxious. After the stress of a day caring for him, I don’t want to recap what is going on, nor do I want to answer questions. I also don’t want anyone feeling sorry for us. More often than not, I find myself not saying much at all.
Eventually, the night ends. I feel depleted, sad, and I am reminded how out of place I feel in the world. I push everyone away from me because it is so hard to be around anyone. I don’t like being reminded our life is different, and I can’t handle how that realization makes me feel. Selfishly I can’t focus my energy on anyone other than my child, and helping friends navigate their problems is impossible for me. I realize I just cannot be the friend I need to be.
Texts go unreturned, I stop answering messages and emails on my social media, and I quit accepting invites or attending events. The truth is I push everyone away because I’m emotionally drained by my feelings. I know our life is different, I hate that my child is dealing with so much adversity, and I can’t relate to anyone around me.
In the end, friendships dissolve because I can’t contribute, keep plans, or give anything to anyone other than my son.
I’ve learned over the years that I’m not alone in my feelings.
Other parents of disabled children have shared these same feelings with me. The lives of parents of disabled children are not typical, and we are keenly aware of our differences.
Our lives are filled with appointments, therapy, and endless paperwork that will take us away from the world as we care for our children. We are not readily accessible to our friends for long periods of time. Many of us feel incredibly guilty for not being better friends, but most of us accept that we are incapable of nurturing meaningful relationships outside of our immediate family.
We wish more than anything that people understood that even though we can’t always be there for people — we desperately need them in our lives. Even though we can’t go to events, we wish people would remember to invite us. We wish we didn’t feel so out of place, and hope that one day we will find someone who gets our life.
More importantly, we wish we were capable of being better friends, and that we could relate to other parents. Our lives as parents of disabled children make having friendship a tough challenge, and for many of us giving up is more natural than fighting.
We fight for everything for our children, so when it comes to the fight to maintain relationships, we need a little more help from our friends.
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12 non-threatening leadership strategies for women
We mustn't hurt a man's feelings.
Men and the feels.
Note: This an excerpt is from Sarah Cooper's book, How to Be Successful Without Hurting Men's Feelings.
In this fast-paced business world, female leaders need to make sure they're not perceived as pushy, aggressive, or competent.
One way to do that is to alter your leadership style to account for the fragile male ego.
Should men accept powerful women and not feel threatened by them? Yes. Is that asking too much?
IS IT?
Sorry, I didn't mean to get aggressive there. Anyhoo, here are twelve non-threatening leadership strategies for women.
Encourage.
With permission from Sarah Cooper.
When setting a deadline, ask your coworker what he thinks of doing something, instead of just asking him to get it done. This makes him feel less like you're telling him what to do and more like you care about his opinions.
Sharing ideas.
With permission from Sarah Cooper.
When sharing your ideas, overconfidence is a killer. You don't want your male coworkers to think you're getting all uppity. Instead, downplay your ideas as just "thinking out loud," "throwing something out there," or sharing something "dumb," "random," or "crazy."
Email requests.
With permission from Sarah Cooper.
Pepper your emails with exclamation marks and emojis so you don't come across as too clear or direct. Your lack of efficient communication will make you seem more approachable.
Idea sharing.
With permission from Sarah Cooper.
If a male coworker steals your idea in a meeting, thank him for it. Give him kudos for how he explained your idea so clearly. And let's face it, no one might've ever heard it if he hadn't repeated it.
Sexism.
With permission from Sarah Cooper.
When you hear a sexist comment, the awkward laugh is key. Practice your awkward laugh at home, with your friends and family, and in the mirror. Make sure you sound truly delighted even as your soul is dying inside.
Mansplain.
With permission from Sarah Cooper.
Men love explaining things. But when he's explaining something and you already know that, it might be tempting to say, "I already know that." Instead, have him explain it to you over and over again. It will make him feel useful and will give you some time to think about how to avoid him in the future.
Mistakes.
With permission from Sarah Cooper.
Pointing out a mistake is always risky so it's important to always apologize for noticing the mistake and then make sure that no one thinks you're too sure about it. People will appreciate your "hey what do I know?!" sensibilities.
Promotions.
With permission from Sarah Cooper.
Asking your manager for a promotion could make you seem power- hungry, opportunistic, and transparent. Instead, ask a male coworker to vouch for you. Have your coworker tell your manager you'd be great for the role even though you don't really want it. This will make you more likely to actually get that promotion.
Rude.
With permission from Sarah Cooper.
Sometimes not everyone is properly introduced at the start of a meeting. Don't take it personally even if it happens to you all the time, and certainly don't stop the meeting from moving forward to introduce yourself. Sending a quick note afterward is the best way to introduce yourself without seeming too self-important.
Interruptions.
With permission from Sarah Cooper.
When you get interrupted, you might be tempted to just continue talking or even ask if you can finish what you were saying. This is treacherous territory. Instead, simply stop talking. The path of least resistance is silence.
Collaboration.
With permission from Sarah Cooper.
When collaborating with a man, type using only one finger. Skill and speed are very off-putting.
Disagreements.
With permission from Sarah Cooper.
When all else fails, wear a mustache so everyone sees you as more man-like. This will cancel out any need to change your leadership style. In fact, you may even get a quick promotion!
In conclusion...
With permission from Sarah Cooper.
Many women have discovered the secret power of non-threatening leadership. We call it a "secret power" because no one else actually knows about it. We keep our power hidden within ourselves so that it doesn't frighten and intimidate others. That's what makes us the true unsung heroes of the corporate world.
About the Author: Sarah Cooper
Sarah Cooper is a writer, comedian, and author of 100 Tricks to Appear Smart in Meetings. Her new book, How to Be Successful Without Hurting Men's Feelings, is out now.
The comedic book cover.
With permission from Sarah Cooper.
A satirical take on what it's like to be a woman in the workplace, Cooper draws from her experience as a former executive in the world of tech (she's a former Googler and Yahooer). You can get the book here.
This article was originally published on March 25, 2019.