Monday, September 26, 2011

FASD & Other Invisible Challenges

I'm a parent of a child with FASD (Fetal Alcohol Spectrum Disorder). I didn't get to make healthy prenatal choices for my child's developing brain, or protect her from damaging toxins. Before she breathed her first breathe there were changes made to the very structure and function of her brain. The untrained eye might not notice the subtle physical hints that my child is on the spectrum for FASD. Her case is considered mild, and she is a child of above average intelligence... which is why her behaviors can seem so puzzling to others. People who don't understand the impact of FASD may think she is "just being naughty" or seeking attention. People may think we are bad parents.

When I see the round faces and cheerful almond shaped eyes of children with down syndrome I wonder if it would be better for my child to be clearly identifiable as disabled.

I wish the world could see that my child is different.

It's not just parents of children with FASD that face this challenge. Parents of children with autism, emotional disturbances, bi-polar, PTSD, Reactive Attachment Disorder and other "invisible" challenges deal with the same stigma. I have honestly considered applying for a service dog to accompany my child. Not just because service dogs are cool AND helpful... but because I want the world to be a kinder, more accepting place for my child.

I have a friend, Aimee, who has twin daughters, one of whom has autism. Her daughter wears a shirt occasionally that says "I'm autistic... what's you're problem?". In public the shirt provokes equal parts applause and criticism. Regardless of your opinion about the shirt... it's purpose is clear. We're not looking for pity. We're not looking for judgement (or free parenting advice :). We're looking for understanding.

At the heart of the matter is tight-wire balancing act we walk each day. We want our children to be challenged, encouraged and included in spite of their disability... while not being enabled, overlooked, pitied or disqualified because of their disability.

I can't control the ignorant or judgmental glances of strangers in public... but most of our life takes place in a tiny corner of the earth that I am responsible for. It's my duty to raise awareness and rally support for my daughter in our little world. My friend Aimee worked with her child's teacher to educate her daughter's classmates about autism. Now her little girl is surrounded by a group of friends who accept her for who she is (and probably know more about autism than most adults). Aimee doesn't rely on snarky t-shirts or Jenny McCarthy to change the climate of her child's world... she's doing the work one 2nd grade classroom at a time. And it's not just the schools that needs our help; we as parents need to connect our child's grandparents, coaches, babysitters and neighbors with tools for understanding our child better.

Here are a few easy first steps for parents of children with special needs:
  • Stock your school's library and classroom with books about differently-abled children and resources such as Squirmy Wormy: How I Learned to Help Myself by Lynda Wilson
  • Observe adults/teachers interacting with your child and redirect their responses to your child's behavior, for e.g. "Coach Williams, I saw that you removed Russ from the huddle because he couldn't sit still. If you allow him to stand he may be able to listen to what you're saying without distracting his teammates."
  • Help your child's peers understand how they can help your child interact appropriately, for e.g. "Jennifer, I can see that you're feeling a little crowded. Since Ashley likes to sit so close, it might be best if you sat across the table from her."
  • Keep a file of helpful materials or articles you can share with family and friends. I developed the chart below based on one I foundin a book. It's an easy reference I can share with almost anyone. (You are welcome to download and use it as well)
  • Connect with other parents of children with special needs. Whether you join a formal support group, or just meet up with a friend or two at Starbucks, take time out to share your experiences, encourage others and normalize the challenges you face.

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