When my daughter was 3, she came to me one day and asked, “What’s wrong with me? Why do I cry all the time?” I didn’t have an answer for her and it broke my heart to see that she was desperate for me to define things that were going on inside of her that she couldn’t understand. She had been in her first year of nursery school and couldn’t get through a two hour day without breaking into hysterics multiple times. Her teachers’ only method in dealing with this was to ignore her and that wasn’t effective because she wasn’t acting out to seek attention. She screamed at birthday parties when they sang “Happy Birthday” and hated to get dressed in the morning but couldn’t tell me why. She cried while watching cartoons anytime a character seemed mad or sad or hurt. So, finally, she turned to the number one person in her life she felt she could trust..her mother. And I was speechless because I knew she was acting this way because she had Sensory Processing Disorder and stunned to realize that she was aware of it. Yet, how do you explain that to a child so young? I couldn’t and instead sat there, saying nothing. In that moment, I had failed her. And that was the day I vowed that I would never fail her again. Immediately following this incident, I took her to a therapist who started working with my daughter on communicating her feelings. I found a sensory motor group for children her age and begun to address her sensory needs with the help of an occupational therapist, even though I really didn’t even know what that meant.I began a laundry list of evaluations to assess every possible area of her development. I left no stone unturned and, over time, with the help of many different professionals, I started to piece together the puzzle of why my daughter felt the way she did. I started to feel more confident about our situation but my daughter did not. I may have been gaining some insight into her difficulties but she was still in the dark and grappling with feelings that were bigger than her was taking its toll. And I still had no idea how to fix that.
Over the course of the following year, I continued on this path of sensory enlightenment for myself. It made parenting my daughter easier and it helped pave the way for getting her needs met in school. I thought I was doing the right thing but, still, my daughter seemed so sad. And then something happened at school. My daughter had a meltdown because she wanted to sit in a certain chair for snack time and the teachers wouldn’t allow it. So, she broke down in front of her peers, while they all stared at her and covered their ears.The teacher had no problem telling me about this incident as she felt it was her duty to teach my child that she could not always get what she wanted. The teacher went on to say that this meltdown ruined the rest of the school day as the interruption delayed snack and everything else in the schedule that followed. I was devastated and I was angry…at her teachers for judging my daughter and refusing to notice her cries for help but more angry at myself because I did not know how to protect her from this. I had this smart, funny little girl who was sweet and compassionate and friendly but she was starting to look worn and weathered. Her eyes would always be red from crying, she walked with her head down and she started to become anxious. Any little thing she deemed “wrong” she would nervously apologize for. She was drowning in her issues and I felt helpless to save her.
Then one day my daughter, who was now 4, said the most amazing thing. She was bouncing around the house, extremely hyper and I was trying to get her to stop. She turned to me and said, “I can’t help myself, mom, because my brain feels tricky and my heart beats really fast.” I was amazed at this moment when I realized that my daughter was explaining her feelings of overstimulation to me in her own words. All this time, my daughter knew full well that something different was going on inside of her and because of the way others (including myself) treated her or talked about her, she thought that these differences were a bad thing. All the cries for help to me and her teachers and no one could give her an explanation, comfort her, or help her get what she needed. All the times the teachers or I spoke about her behavior in front of her like she wasn’t even in the room she knew exactly what we were talking about. She wasn’t feeling bad about herself because she had Sensory Processing Disorder. She was feeling bad about herself because WE made her feel bad about having Sensory Processing Disorder. After all this time I had finally figured out what was bothering her and I knew how I was going to fix it.I had to acknowledge and explain her Sensory Processing Disorder to the one person who needed it the most..my daughter. Did I look at my 4 year old and say, “You have SPD!” Of course not. But what I told her, in a nutshell, was this:
1) YES..your brain feels tricky…but everyone’s brains feel tricky about something. Each person has things that their brains find easy to do and things that their brains find “tricky.” For mommy..I am bad at math, I hate roller coasters and scary movies. They make my head feel funny and my heart beat fast. For you…your brain finds it hard to listen to loud noises, or wear scratchy clothes. And that is OK..because those things aren’t bad..they just have to be worked on. And I am here to help you.
2) YES..you have a lot of feelings but that is not a bad thing. You must work on controlling your feelings but having a lot of feelings is what makes you so kind and caring towards other people. Having a lot of feelings is called being sensitive and that just means you have a big heart.
3) She asked me one day what therapy was because she heard the word so often both at school and at home. I told her therapy is a place to practice things..some kids get speech therapy to practice how to speak. You go to OT to practice writing and calming your body down. You go to play therapy to practice your feelings.
When I told her these things, a wave of relief washed over her and it was the start of a brand new chapter for us. A new chapter for my daughter who finally found some concrete answers to the questions she had about herself. A new chapter for her parents who stopped hiding her difficulties as if they were something to be ashamed of. How could she be proud of who she was if we felt the need to hide it from her? From that point on, we have spent a lot of time talking about her issues in a kid friendly way and have since been able to build on this foundation of awareness she has about her own SPD so she can lead a happy and fulfilled life. In the last year, we have started to teach her to recognize the signs of sensory overload in herself and she has begun to find ways to give herself the appropriate input she needs to calm herself down. She has been better able to use the behavioral tools she has been taught to express her overwhelming emotions in an appropriate way. And, just recently, we have been able to show her that her initial reaction to sensory overstimulation is very quick and very strong and makes her want to run away. However, when she sticks it out and calms herself down, she is able to overcome. And she is starting to overcome lately, more than she ever has. She may cry and scream and run at the first signs of sensory overload but she has been able to get past it more times than not and the feelings of pride she has for herself are overwhelming. At the suggestion of a friend, I have begun to compile a book of her sensory accomplishments to give her a concrete reminder of all the times she has overcome and to give her the courage to continue to try situations she has avoided in the past. Since giving my daughter this power over her SPD, she walks a little taller and laughs a lot more. She is silly and funny, not sad and anxious. Lately, I hear her say things like “I am brave!” and she couldn’t be more right. She is, in fact, the bravest person I have ever met. She pushes herself out of her comfort zone more at the age of 5 then I ever have in my entire adult life. Her SPD came with an awareness that is far more mature than her five years. And for the longest time that awareness, without any explanation, made her feel like something was wrong with her until we realized how to turn things around and use that awareness to empower her. It may have taken awhile to get here but it was well worth the wait.