Dear Sweet New Friend Who Wrote To Me,
You are not alone. If only I’d had someone to tell me that 5 years ago maybe things would have been easier. Maybe I could have let go of the shame. Maybe I wouldn’t have spent so many nights crying. Maybe I wouldn’t have felt compelled to tell so many lies.
You are not alone. If only I’d had someone to tell me that 5 years ago maybe things would have been easier. Maybe I could have let go of the shame. Maybe I wouldn’t have spent so many nights crying. Maybe I wouldn’t have felt compelled to tell so many lies.
Let me begin at the beginning. None of this is your fault. You have to embrace that truth if you’re ever going to move forward. Your child has a developmental disability. This happens to thousands upon thousands of people and no one knows why. It sucks. It’s cruel. It’s unfair, but it’s your choice whether to live in anger or acceptance.
I have endured everything you are currently enduring and I’m still here. I have been kicked, punched, bitten, and spit on. Kevin attacked other children and pitched violent fits in public, often. You are not alone. You think you’re alone for the same reason I once thought I was alone: you’re hiding.
I know all about that. I hid for almost a year when Kevin was just your son’s age. “Oh you’re having a barbecue? Well I’ll send Chris and the girls but Kevin isn’t feeling well so I’ll catch you next time!” Only Kevin wasn’t sick. Kevin was still wearing a diaper at age 4 and what if he asked to be changed? Then everyone would know my four year old still wore a diaper and what would they think?!
“I have to go to Macy’s! Oh I can’t go to Macy’s the last time we went he wanted me to buy red lipstick and when I refused he pitched a violent fit and destroyed the makeup display at the MAC counter. If I bring him there again he might do something worse and what will everyone think?!”
“Mommy I want to go to the playground!”
“I know sweetheart but you’re going to have to wait till daddy gets home we can’t bring Kevin to the playground remember the last time we went?”
“He hit that boy.”
“Yes so you’re just going to have to wait, OK?”
“I hate Kevin Mommy, he ruins everything.”
I heard that from my daughters more times than I can count. And every, single time I was desperate to take them wherever it was they wanted to go. I was desperate to be the mother who could handle the stress and uncertainty but I couldn’t. I was frozen in fear of what he might do and the way people looked at me when he flew into a blinding rage. I could hear them whispering amongst themselves when he did. “Why did she bring him here if she can’t control him?” And in my mind they were right. What WAS I thinking letting him out of the house? I had to hide. I had to keep him hidden. I couldn’t let anyone see what he was and that’s how I justified not taking my girls to the playground or the pool or the mall or wherever they wanted to go.
“I can’t take you to ___________ my darling I can’t because if I do something bad is going to happen and I won’t know what to do and what will people think????????!!!!!!!!!!!!!
“I can’t take you to ___________ my darling I can’t because if I do something bad is going to happen and I won’t know what to do and what will people think????????!!!!!!!!!!!!!
There’s a word for this: shame. I was ashamed. I was ashamed of Kevin and I was really ashamed of myself. “A better mother would know what to do,” I’d tell myself.
“A better mother would know how to fix this.”
“A better mother wouldn’t be hiding.”
“A better mother wouldn’t have to.”
I’ve been told many times that I’m a good writer and I’m not sure if it’s true but I’ll tell you what I KNOW I’m gifted at: verbally tearing myself to shreds.
And I wish I could tell you it happened overnight but I can’t. I wish I could lie and tell you you don’t have a long road ahead but I can’t. What I CAN tell you is I’m here. I eventually found the courage to come out of hiding and my life is SO much better since I did. And you already have something I didn’t when I was you: the knowledge that you’re NOT the only one. You just think you are because you’re hiding out of shame just like all the other women like yourself. It’s what people do when they’re ashamed, they hide, because after all, “What would people think if they knew_________.”
So, you asked me what you should do. Here is my answer: Accept this is not your fault and get to a behavior therapy firm, NOW. Your son is wildly and unimaginably aggressive. Accept it, surrender to the reality of it, and hire a trained professional to help you manage it. I wish I’d done it sooner. The behaviorist we hired taught us how to restrain him when he became violent, set firm boundaries, and anticipate tantrums. The better we became at handling his outbursts the more infrequent they became. Then came the hard part: I had to start taking him out in public to practice what I’d learned. And not just any public. The behaviorist instructed me to take him places he was LIKELY to freak out.
So I did. After three failed attempts (where I ended up vomiting in my driveway because of the anxiety) I brought Kevin to the playground. But before I went I wrote myself a letter.
Dear Rachel,
You’re going to the playground. It’s going to be packed and Kevin is going to lose his shit at some point. He’s going to try to hit you, his sisters, or other children. When he does this you will restrain him as you’ve been taught, in full view of all the mothers and children who WILL stare at you and judge you. Kevin is going to test the boundaries. He’ll ask for ice cream knowing full well he can’t have it and when you say no he’s going to throw himself on the ground kicking and screaming because he thinks if you’re embarrassed you’ll give in. You will not. You are about to have a horrible afternoon, but you’re going, because you’re not hiding anymore. As of this moment you are done caring what other people think. Fuck ‘em. Let them stare, let them judge, let them think whatever they want. You are officially finished with letting the opinions of strangers dictate how you live your life and how you raise your son.
Love, Rachel
And I went. And it was even worse than I’d imagined. It was absolutely horrible. Everyone stared at me with accusatory glances and mothers guided their children, impolitely, away from my son. My daughters asked several times if we could go home because it was so embarrassing but we stayed, and I survived. I was humiliated, but I did it.
I don’t know if you read my last entry but we actually took Kevin to Universal Studios last month. I know, can you believe it? I knew he was going to be awful, but I went anyway. That’s how we live around here now. We go wherever we want and do whatever we want knowing full well Kevin is probably going to flip out but it’s OK because we know what to do and who cares what anyone thinks. We don’t live like other people: we can’t. We don’t play by the same set of rules so spectators are never going to understand what they’re seeing and I don’t have time to explain it to them, I have a life to live.
And I apologize if I came across as “having it all together” because I do not. For the most part I am a complete and total train wreck and I’ve made more stupid decisions than I care to count. However, in one regard I’m on the right track: When it comes to Kevin I don’t give a shit what anyone thinks. Why? Because I’m not ashamed anymore. I know his disability is not my fault and I know I’m doing the best I can with the hand I’ve been dealt.
I know you are hurting and embarrassed and afraid but you have courage. It takes courage to admit you don’t know how to help your own child. It takes courage to ask for help when your life has become unmanageable and there IS help out there if you’re willing to ask for it. The best part about getting help is you get to meet other ladies just like you! There’s tons of them in the waiting room at the behavior therapy office and they’re nice! While your son is in therapy you get to talk and cry and share stories with all the other ladies just like you whose sons hit, bite, pull hair, and pee on your furniture. It becomes the best hour of your week.
Hiding is lonely new friend, please come out into the light. I’m right here and I understand how you feel. Letting go of other people’s expectations set me free and gave me the courage to write about what I’ve been through and what I’m still hoping for. I write for you. If you need concern yourself with what other people think, consider what I think. I think you are a wonderful mother doing the best you can with a very difficult situation. I think you have heart and courage and compassion. I think you have what it takes to face the world without apology. I think you have the capacity to heal and hope for the future. I think that if I can do it, anyone can.
Good luck
Good luck
Happy to be in your truth light. It is what it is, … you handle the 'is'. I watched the other day as your 12 yo daughter talked Kev out of the shed after being told by her he could not ride off on his bike. I had her back but she had control.
Amazing poise…you worry about the affect on the girls…I marvel at their poise and strength. What they will bring to the world I only pray I get to see. We love you guys.