An Open Letter to Special Needs Parents

Hey you! You with the blog that walks through the everyday challenges you face with your child. You who writes passionate pieces that call for an understanding of your child’s unique needs.

I need to talk to you.

I am the type of person that your child may become in the next few decades. I am a neurodivergent adult navigating the multitude of challenges that exist in a world that has a long way to go to before achieving a full level of acceptance of those with brain differences. You and I need to work together to educate and inform. We need to work together to make the world more welcoming for your child with autism. For your child with sensory processing disorder or auditory processing disorder. For your child with ADD or ADHD. For your child with anxiety or panic. For your child with any of a litany of experiences that place him or her outside of the neurological mainstream.

I have walked a path similar to the one your child is walking now. I’ve walked it since 1975, when the diagnoses I listed above were unknown or even more poorly understood than they remain today. I walked it without a mother or father like you who held my hand or picked me up when I stumbled. I walked it alone, sometimes confidently, and sometimes cautiously.

I was graced with moments when people outside of my family, people who I now think of as precious gems, offered me safety and security, however briefly. I was cursed by times when I struggled unsupported and almost lost my life. Worse yet were the times when I failed myself by losing hope.

We need to be allies, but I am saddened that many times we seem to be at odds. When a look of horror crosses my face as I turn up the red noise on my noise cancelling headphones and run from your child as she screams in the grocery store, don’t assume I’m a callous jerk. When I force back tears and grit my teeth as your child melts down at the pharmacy, don’t call me evil for wearing a look of displeasure before I am forced by the noise to depart without my medication.

I want very much for your child and I to be able to share the same space. The same stimuli that torment your child, causing him to cry and wail, hurt me just as much. Please protect your child. I know there will be trial and error. You will have to experiment with sunglasses, ear muffs and ear defenders, and various sensory objects. Please keep trying. The pain that your child has undergone by the time they reach the point of the 110 decibel meltdown that drives me back to my home is a pain that you simply cannot fathom.

I am your ally. I am the person who will ask the store manager to turn down the music. I will ask the receptionist at the doctor’s office to turn down the television. I am the person who will give you a crash course in creating quiet. I am the person who will answer questions about why certain things hurt sensory sensitive people in the ways that they do. I am the person who can offer survival strategies for an unwelcoming world. I am also the person who can only risk going to Target or the grocery store once a week, because my noise cancelling earbuds can’t block all sounds, and a single encounter with a 110dB shriek can ruin my cognition and concentration for the rest of the day. With sound of prolonged intensity and exposure, I can become completely non-verbal.

I have to delegate my sensory risk taking and my energy expenditures, as does your child. So please understand, if in a moment of hurt you see a look cross my face that is less than kind, it is because I am reaching as deep as I can into my heart for compassion for you, while in the midst of great pain and the rapid onset of immense confusion. My expression may be strained as I try to balance finding empathy for your child and respecting my own need to protect myself.

Please understand that we all belong together in this world, and we must share the same roads. Should we pass one another, and our needs seem to be in conflict, it may be because my needs and the needs of your child are actually the same. We are united by experiences, and only separated by age.