Have you ever felt misunderstood in your journey as a special needs mom?
We’ve all had experiences where people just don’t get it – whether it's a stranger at the grocery store, a lady at your church, your mom, or your best friend. These situations can be hurtful and can cause us to feel alone.
People say a lot of weird and hurtful things that they don’t understand. It’s easy to stack up all those negative experiences, the slights, the misunderstandings, and think that nobody will ever get us.
I could give you a list of things people have said to me over the years about my children, but I want to take a little different approach today. Instead of focusing on things people say – which, let’s admit, can be some dumb things – why don’t we focus on our own reaction? After years of negative comments we expect to be misunderstood, and we become easily sensitive to what others say. But in the process, we miss potential connections. Some people won’t get it, but if we put up a wall, the people who might get it are also shut out.
Here’s an example of a story that happened to me:
Several years ago, our daughter, who has reactive attachment disorder, was raging and out of control in our home. Our house was chaos, and there was no way to protect everybody. My husband and I had tried everything. We had gone to every treatment therapist, psychiatrist, and doctor possible.
I will never forget the day that we decided that we needed to send her to a residential treatment program. I had gone for a run that morning and was sitting on a bench by beautiful Lake Michigan. I was quite tearful when a friend of mine walked by. Now, this was not a super close friend, but it was somebody who knew my life and for some reason, my guard was down. I poured out to her what we were thinking about. My friend proceeded to listen with love and then she told me a story about her own life. She told me a story about a dog that they needed to put down, a dog that was causing havoc in their house, a dog that was unable to live in their home.
Now, I know what you’re thinking – you’re thinking, "Really, this lady compared your child to a dog?" Yeah, that’s what I felt at first. "How in the world could you compare these two things?" And I kind of cast a judgmental eye over that conversation. But in truth, something about that conversation helped us decide to send our child to residential treatment. I’m not comparing my child to a dog, and initially I saw that conversation in a negative light because of the nature of what we talked about. But I think I missed the glimpse of understanding. This friend was trying her best to take something she understood and connect with my life. So what if instead of having our defenses up, we look at the conversations and say, "Where’s the connection? How is this person trying to connect with me? How can I not be so easily offended?"
I am not talking about the people who say hurtful things on purpose; I am talking about the ones who are trying their best and seem insensitive. If we give those people a chance, they may turn out to be our allies and friends and biggest support.
So how do we practically do this?
Have an open mind and look for the connection.
When someone says something to you like, "I could never do your life, it just seems so hard, you just make me exhausted when I look at you on Facebook," it can feel incredibly isolating. But what if we changed our perspective? Lets change our perspective with thoughts like: at least this person is looking at my post, at least this person knows something about my life. Maybe they’re praying for me? What else could we say to a comment like that?
Now, I know some comments need to be dismissed as rude, but I think most people are trying to understand, and we have the mindset that they just don’t get it. Boundaries are important, but so is letting people in.
Take a Deep Breath and Calm Down
When the ignorant comments come, can you calm down and take a breath before you respond? How can you calm yourself so you can be in the state of mind to graciously share your life with others? Sometimes we need to take a deep breath; other times, we need others to help us be calm before we are able to respond.
"Unless there is a non-anxious presence in the room, we will all spend our time reacting rather than co-regulating. The truth is our brains will either continue ramping up under the perceived threats, or we can calm one another down if just one person remains connected to his calm, core self. This is co-regulation. If we have regular spiritual rhythms, we will have the skills and tools to calm our emotional mind into a wise mind under dire and painful circumstances and create health and longevity in everyday life.
Jesus is the most self-differentiated, non-anxious presence in every room. He is the good shepherd who looks in adoration at his sheep. I think all of us can turn to him for co-regulation. With time and practice, we can all imagine looking at Christ’s beautiful eyes rather than the problem before us. Maybe this is what it means to fix our eyes on Him."
--Jamie Harper, A Curious Pursuit of Christ
We can rely on loved ones, ourselves, and Christ to keep us emotionally calm and get us ready to do the next step: share our stories.
Keep telling your story.
It’s up to us. We need to tell our story again and again. When we honestly share our stories, we learn from each other, we gather strength, and we come away encouraged. But most importantly, we feel less alone and we can finally be seen.
You don't have to tell the whole story or share all the private details of your life. You also don't have to take on the responsibility of educating everyone in your life about your child's diagnosis. There are podcasts, books, and websites you can point people to, to learn more about your family's needs.
However, you are the only person who can accurately and gracefully share your heart with the world. You are the one who can tear down the walls and let friends and allies into your life. Keep telling your story; it's the bravest thing you can do.