Words, to me, are like water; they are life-giving and essential. I drink them in deep to make sense of the world with in me and around me. Gentle like the trickle of a playful stream and powerful like the torrent of crashing waves in a violent storm through rain, snow or ice, water like words hold magic in the ability to take many forms. Words matter and defining and clarifying why within our great lexicon is especially important when raising children with special needs.
One of my greatest personal griefs as a mother is the loss of connection with my daughter over my love of words. Language for her is foreign. The nuances of language are dull and imperceptible; it is like trying to discern stars in the orange-brown of the light polluted sky—it all becomes muddy. To me words are sharp and precise with a woven tapestry that is like a picturesque view of the Milky Way through the most detailed of telescopes. Nevertheless, words matter and there are certain lessons nuances that must be not only be taught explicitly through definition but also breathed into life and experience for her and all our benefit over and over again.
There is a difference between secret and private.
Foundationally and fundamentally this distinction must be infused in the fabric not only of our lexicon but of our lives; it is important for everyone and it is exquisitely so for us. The difference is far reaching with impact both practical and abstract.
By definition, a secret is never meant to be shared with others; it is the burden of one or a very selective few to carry. Whereas, private is something belonging to someone or a group that is chosen not to be shared with others.
Even for a wordsmith, this nuance can entangle. Here is why it matters: our struggles are not a secret; they are private and that means we choose who, when, where, and how we share them because they are shareable–meant to be seen and carried by others. Secrets are the breeding ground of shame and the enemy of vulnerability. Queue the Queen, Brené Brown.
Special needs, mental illness, significant sickness and the like have been relegated to the dark shadows of society–institutions, the homeless we walk by trying not to make eye contact, religious charities, etc. If one had a family member with epilepsy, autism, intellectual disability, rare disease, then it was not meant to be known; it was a secret and with that secret carried great shame.
We have made great progress in the past hundred years in our society and we are still living in a society that treats disability as if it is a secret. We speak of disability in ablest terms: overcoming, beating, fighting, etc. It is as though we are constantly expecting those living with disability and their able bodied family to beat back that which is integrally a part of them and the fabric of their lives, of their family dynamic, into the shadow; to make it secret again.
Our struggles are not secret they are private. They belong to us and we choose who we honor with their sharing. We do so in a safe and planned manner that shares what we want when we want. In doing so I commit to sharing what is mine. That means I share my experience as a mother of children with Tuberous Sclerosis Complex (TSC), autism, epilepsy, cortical visual impairment, dyslexia, AHDH, and more. It means when I give pieces of my children away to others I ask myself first would I want this told about me; I ask this not because there is something to be ashamed of but because I respect their privacy and their choices. And, in asking myself these questions I am teaching them the meaning of privacy.
We must speak this to life; if we do not then it becomes secret. For a child whose neurology does not afford them the regulation to keep their experiences internal in public (read: meltdowns), it is vital to empower them with the understanding, empathy, and deep compassion that it is okay, more than okay, to be seen during struggle. We all struggle and that it is not secret. Their struggles, just because they may be more intense, loud, violent, scary, public, are not secret or more shameful than others. This also means we as parents must work to afford our children as much privacy as they want and makes them feel comfortable.
The lesson of secrecy versus privacy breathes agency to life. The impact is far reaching. When a child knows that their body is private not secret they also know no one should transgress against it. This is vitally important for children with special needs who are more vulnerable to abuse and potential sexual predators. For a child with autism who has hard and fast, black and white rules for language and living it is life saving to teach that secrets are never ok and private and privacy is a right that is all theirs.
The life giving water of words suits me. It is a babbling brook that feeds my family and protects them. It gives them shelter and private place to pour out their deepest selves.