No. Touch. Hurts. Those three words will forever haunt me. This image forever burned into my memory. The three words gasped by my daughter in the middle of a meltdown as she pushed us away. It was THE “AHA” moment. The look on her face that went with her physical pain. Her crumpled body huddled in a corner eyeing us warily as we tried to calm and console her. The first time she was able to tell us something she was feeling in a meltdown and it took every ounce of her concentration to do so. Then she was gone back into the abyss of a sensory overload meltdown.
All I could do was wait for her to come back. The more I tried to soothe and calm her with my words from a distance, the more she screamed and rocked and cried. Eventually I just sat there within arms distance hesitantly watching her. As her mom, I felt like I failed her. I failed to understand her. Here she was. Eleven and a half years old and everything I’d ever done in these situations actually caused her physical pain. I wanted to cry with her. Instead, I observed her.
What I noticed was as she was able to slowly regain control and regroup she had a different look; a look of sheer exhaustion and fatigue accompanied by a look of defeat. The rocking slowed as the sobs subsided. Until she was perfectly still and quiet and I didn’t know what to do. I just sat there watching her curled into a ball on the floor in a corner.
I waited for her. I waited for her to make the first move. Afraid that if I did it’d inflict more pain. I didn’t understand. I wanted to understand. I NEEDED to understand. I needed to know how to protect her so that I didn’t hurt her. That’s my job, to protect her. She was so exhausted. She could have slept in that corner all night. I would have let her.
She didn’t. She wearily crawled over to me and laid her head in my lap. She needed me. She wanted me. I didn’t know what to do, so I just did what I always did when she did that. I rubbed her back and brushed her hair back from her face. I didn’t speak first. I refused to speak first. I felt when the tension left her. She finally looked up at me, a fresh round of tears threatening to spillover and she told me she was sorry.
She thought she hurt me with her words. I was hurt but not by her words. We struggled to communicate through the conversation but eventually we both got to the same point. We learned so much that night; we learned that we had to let her regroup and calm down preferably alone in the dark however long it took. Otherwise all the talking, soothing, hugs and touch, all of it would cause her physical pain. Some kids are like her. Some crave some or part of those things in that timeframe. Others may crave just the opposite.
Communication changed that moment. It took eleven and a half years but she found a way to break out of herself to communicate her need in that moment and it changed how we dealt with those moments. It was so intense but it led to other moments. Some quicker than others but we slowly learned what Em needed from us. It didn’t happen overnight. She still is telling us things to better help her.
She can verbalize her needs most of the time now. Using calming techniques she’s learned. Some of it is she has gotten older and matured. She occasionally gets stuck sometimes finding the words and has found that texting or messaging us is easier. She can type it out, read it, think through it and then either send it or edit it. Sometimes when she is talking to us you can see she’s trying to get an idea out. The clear look of determination and frustration is evident on her face as she struggles to get her meaning across. We used to try and help her by offering “ideas” of what we “think” she is trying to say. Often though, that ticks her off and frustrates her more. We are still learning to let her flesh it out as she goes.
The key for Em and many like her who have a form of Autism is finding a way to help them communicate. Communication isn’t just about words and speaking aloud. It includes body language, sign language, using technology and adaptive devices. It means figuring out how to help them unlock their potential. Not all kids want to talk and communicate but we need to ensure that they have the tools to tell us what they can.
She still struggles and she may always struggle where communication is concerned. Yet, every day that she reaches out and communicates a need, I remember this particular day. I’m grateful for a moment that drove home that point of her needs are different and we need to figure them out. It was the keystone of how we changed parenting her and coming into her world. It also reminds me how little we actually understood her until she started to tell us about herself.
That was the night we realized she was struggling to come into our world and we would never know or fully understand all her needs until we came into her world and learned who Emelie was. So we came to her. We let her show us her world as she could. She’ll now come out of her world and shell, knowing that there are people who understand her and her view of the world. She also discovered she isn’t alone in her struggles and obstacles. Em has learned to embrace who she was, is and will be and while she still has some rough days, overall has learned to be content with that knowledge. We are here for her on the days she isn’t. It’s what we feel it means to be family. Baby steps and standing by each other.