“How are you?” A simple enough question, with a complex answer. I have a neuro-diverse family. The brains of my children were wired differently from birth, with invisible conditions, ranging from depression and anxiety, to autism, to brain differences related to prenatal drug or alcohol exposure.
My days are filled setting my children up for success. In our home: with nutrition and medications for the brain, clarifying expectations, providing consistency and mediation. In school: educating teachers on learning strategies that work, on brain-based reasons for specific behaviors, on prevention and de-escalation methods. In the community: supervising teens whose peers are independent, and educating librarians, police officers, and employers as to why things seem “off.”
The needs of my children are so intense that I do this full-time now.
The world is not yet supportive of neuro-diversity. Educators, physicians, judges, sales clerks, and others have certain expectations of young people. When my children can’t meet those expectations, bad things happen.
On the mild side, my kids are verbally reprimanded or shunned for their actions — too loud, too close, too happy, too rude. On the extreme end, my children are suspended or jailed — for scary words, for ripping classroom posters, for throwing things.
Through it all I am judged. In the eyes of many, the issues of my children stem from something I’ve done or not done as a parent, because my kids look identical to their neurotypical peers. You can’t see brain differences that cause impulsivity, or sensory issues, or emotional outbursts.
“How am I?”
“Drained. Frustrated. Uncertain. Isolated. Grieving.”
Sometimes I feel I’ve lost myself. Every ounce of my energy directed toward someone else’s well-being.
I make conscious efforts to care for myself. To literally feed and clothe and clean my own body. To do things that bring me joy. To connect with other adults and nurture family relationships. To seek communities where parents share my experiences. Most importantly, to celebrate the characteristics of my children that delight me and motivate me to continue.
I care for the children and I care for the caregiver. To survive long term, I need to re-define “success.” If my hopes are truly unattainable, I’ll be discouraged and quit, which serves no one.
Not college-bound? Maybe food photography earns a living wage.
Not able to get through a whole school day? Maybe online classes can make up the difference.
Not launching independently? Maybe I have help with yard work for a few more years.
Each re-definition could signify a loss — for a dream of mine, for a potential of my child. But each re- set also involves hope. A future that might be different from what I envisioned, but that represents my evolving perception of success.
“How am I?”
“Determined. Hopeful. Loving. Joyous. Satisfied.”
“How are you?”
I save the too-complex-for-the- grocery-store explanation for another day, and simply answer, “Fine.”
Books that re-frame mental health
“Trying Differently Rather Than Harder: Fetal Alcohol Spectrum Disorders,” by Diane Malbin
Worth the short read even if you are not affected by FASD. An epiphany for me to see mental health conditions as warranting accommodation similar to physical disabilities, and understand that changing environment amplifies success.
“Help for Billy: A Beyond Consequences Approach to Helping Challenging Children in the Classroom,” by Heather T. Forbes
Outstanding book full of real stories and practical suggestions about how to re-frame events from a mental health perspective. My “go to” book when trying to help schools understand my children.
Books that help bring peace
“Tear Soup: A Recipe for Healing After Loss,” by Pat Schwiebert
An insightful tale giving permission to handle grief in whatever ways make sense. Good for any age and any loss.
“Three Days on a River in a Red Canoe,” by Vera B. Williams
A children’s book about a young girl that takes a canoe camping trip. I delight in remembering the strength of children and the healing that comes from a trip to the woods.
“Only One You,” by Linda Kranz
“Blend in when you need to. Stand out when you have the chance.” A good reminder that being unique is OK!