I read a blog post recently written by a preacher who learned a valuable lesson about listening to the story of others before making any assumptions about the person. When we listen, we grow in our understanding of the lives of others and the realities in this world that we may have never experienced. When I read social media posts, I see the pain that so many people experience when their stories aren’t heard. People try to tell their stories so we can try to understand what it’s like for them as cancer patients, as people with special needs, as people who grieve over a loss, as people who face hate or violence of all types, as people who struggle with depression or addictions or pain of so many types.
As I am sending a wonderful young woman with special needs to college, I am shocked at how many people are simply unwilling to listen. They are quick to judge, to assume I must be doing something wrong. They are also quick to pass along advice that is simply wrong for our circumstances. Here‘s what I wish you could hear from my life story that would really help my family:
I know she looks “normal” to you. I hear that a lot. Looks aren’t everything. I have a file cabinet full of medical documentation that chronicles our journey through being born with neurological challenges. What’s her diagnosis: my daughter is on the autism spectrum. She also has Sensory Processing Disorder. I can explain what all that means to us if you wish, but please don’t just do an internet search and think you understand. Every child with these diagnoses is different.
She needs “alone” time and down time to succeed. Please quit telling me to make my child be more sociable. When she is alone with headphones in, she is recharging herself. All groups are chaotic to her, so it’s a miracle that she is finding her way through even the small college we chose for her. She thrives with order, lines, clear directions on exactly where to walk and when. That’s not reality at college, but she’s willing to face it anyway. But don’t tell her what she needs to succeed. She doesn’t need to join up every time other freshmen do. She needs a quiet library, a structured quiet meal and a time to wrap up in a blanket on her bed (when the room is empty). It’s so healthy for her.
She’s not rude. Sometimes she just doesn’t feel up to eye contact or know exactly how to respond to some greetings. And yes, when she does respond she’s incredibly blunt. But I love that about her. When you get to know her, you will find it very refreshing. If she doesn’t want to join you for an event, she will not hesitate to just politely say no, she doesn’t want to. She’s not going to say things like “let me check my calendar” or “I’ll get back with you.” And understand that the cafeteria is crazy for her. Be patient as she tries to learn how to order her food amidst loudness and busyness that is so hard for her to handle.
She can’t verbalize a lot of what she’s thinking or feeling. I’m not being a helicopter Mom when I initiate the conversation. I will never ask you to go easy on her. I will never ask you to give her a grade she has not earned. I will never ask you to drop a consequence if she has erred and needs the consequence. What I will ask of you is understanding. When she hurts, she can’t tell you what hurts. She doesn’t know if she has strep throat or an infected leg or a stomach bug. When she needs help, I need to step in so we can together assess the severity of the situation. I am her mother and her advocate. She dehydrates because she never feels as thirsty as she should. She only weighs 87 lbs. Her brain just sends crazy messages to her body about what she needs and how she needs to process food. She doesn’t have an eating disorder. Her doctors all know about her weight—it has been a life-long issue. She can’t always verbalize her class needs or her social needs. Allow me to initiate the conversation to model for her strong communication and to make her feel secure in the setting so she knows you are listening and willing to accept her as she is. If you assume she has to verbalize everything on her own, you are not helping her succeed. There’s nothing wrong with needing a prayerful and gentle advocate who just helps with communication.
She’s amazing if you just take time to see it. She served as a volunteer for hundreds of hours during high school. She has already signed up to tutor elementary kids near her college. She wants to teach music to young children as her career. I think she will do great with that career!
She’s not lazy. She just gets confused and overwhelmed by some “social” assignments. So far she has been faced with the challenge of asking for rides for required off-campus assignments. Verbalizing the need and then figuring out a common schedule is quite a challenge for her neurologically. She also had to go up to classmates and conduct an oral interview for a class. Wow—huge challenge for a kid that was born nonverbal. Please don’t tell me that is something she should just get over and learn how to do. She’s come so far in life. I’m ok if there are some skills she never masters. God can bless her life without her learning to be “just like others.” Just because you assume something is a necessity in life, doesn’t make it so for everyone. I want her to reach her potential—whatever that may be. I don’t want her to try to change to meet our worldly American definition of what life must be like.
Get to know us—really get to know us—before you give advice. Listening should come first. I’m ok with whatever you want to think about me. I don’t define myself by your judgments. But if you want to make a difference for her, take a moment to consider who she is and what challenges she has already overcome. Her life story is pretty amazing.