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.

Rock-a-bye Mattie

Mattie Rose was up in the night again last night.

When she first came to our home, my husband and I would wake up in the night with her standing at the foot of our bed like something out of Poltergeist. Like many children who have faced trauma, Mattie has Post Traumatic Stress Disorder (PTSD). She is a tightly wound spring most days, and it takes a long time for her to unwind. We've asked her to lay quietly in her bed if she can't sleep or wakes in the night, and for the most part she does. We can tell she is trying. But some nights she just can't lay still. I will hear her thumping around upstairs hours after bedtime.

If Mattie were an only child, this might not be such a big deal to me. But Mattie usually involves one or more of her siblings in her nighttime escapades, and generally wakes up a couple more while she's prowling around.

She's pretty sneaky.

But I'm pretty sneaky too.

I turn down the TV and listen for a minute to confirm my suspicions that Mattie is singing/playing/yelling/crying/running water in the bathroom/knocking on bedroom doors/flipping lights off and on/writing on something with a sharpie marker. I creep up the stairs and tip-toe down the hall, pausing to listen and zero in on her location.

I step on a Lego, but muffle my own cries of pain.

I'm too close to compromise my ambush now.

I hobble the rest of the way down the hallway, then spring into action. Quick as lightning, I open the bathroom door. She's a deer in the headlights. My almost-5-year-old is seated on the bathroom floor putting Suave Volumizing Conditioner on her legs like lotion.

She freezes.

Conditioner drips through her fingers onto the linoleum floor.

I snatch a towel from the towel rack and one of the anchors pulls out of the drywall. I'm muttering something about stud finders while hastily mopping up Mattie and the conditioner. I make sure to keep my angry/disappointed face on so she knows I mean business. I take her downstairs and make her sit in the time-out chair. Time-out isn't her consequence, but we don't spank* Mattie, and I can't send her back to bed because I'm convinced she will get up again, and I can't think of something reasonable because I'm more angry than I should be about the situation.

I'm furious. It's dumb. This is not that big of a deal.

And... the towel bar thing is really my fault.

After about 10 minutes, my angry/disappointed face has faded and I know I need to do something about the prekindergartner in the time-out chair. But I can't think of a darn thing. No consequence I can think of makes sense.

Then I remember- my goal is not to punish her, my goal is to get her to sleep.

Lightbulb.

My bedroom is dark, cool and quiet. Mattie and I settle into an ancient rocking chair that we inherited from my husband's family. It squeaks. It smells like old people and Waco. I love that about it. It's exactly how a rocking chair should be.

For forty minutes I rock Mattie.

For forty minutes her little hands keep a vice-like hold on my shoulders.

It's now 4 hours past her bedtime. Her eyes are closed, but I can tell from her rigid body and breathing that she is not asleep. Finally she releases a little sigh. 50 minutes. An hour. Her shoulders start to fall and her hands loosen a little. I bury my nose in the part of her hair. I trace the outline of her tiny hand with my finger. I feel her heartbeat on my chest.

It takes an hour and fifteen minutes to rock her to sleep.

Mission accomplished. She's peacefully sleeping on a pallet on my floor. Now I'm the one who can't sleep. I'm laying in bed, replaying recent weeks in my mind and giving my parenting skills some much needed self-evaluation. In so many situations I find myself being reactive, instead proactive. I'm going to work on that. I'm going to focus less of my energy on "catching" my kids doing wrong, and more energy setting them up for success. I'm going to give "do-overs" when my children disobey.

And I'm going to rock Mattie to sleep more often.

* We don't spank Mattie. This is not a judgement on parents who spank (unless you're using physical discipline with foster children. Not ok). With our older bio kids this was our go-to consequence. But we've grown since then. We've spent years trying to fill our "parenting tool box" with other methods. And they work.

New Life

Today I spoke with my youngest three children's birthmother. We've played phone tag all week, and I know she is anxious to talk to the kids and set up a visit. Although we adopted the children from foster care, we were able to build a beautiful mentoring relationship with their young mother. Our adoption is open. This has made our lives more beautiful, more stressful and more complicated. We have laughed together, gazed at pictures of the children we share, stood in court holding hands, cried together... and now we will celebrate together.

Our birthmom is pregnant.

I call her frequently to check in, and we exchange weekly letters through a PO Box. I was initially surprised and delighted by how regularly she wrote letters. Some are addressed just to me. She describes her personal thoughts and struggles in the soft, loopy handwriting of a much younger girl. Others are meant for sharing with the children. I'm impressed by her commitment and diligence that has bonded us as unlikely pen pals.

And now she is in a new relationship and expecting a baby boy in the fall. I'm caught off guard when her boyfriend answers her phone this week, but I can hear her excitement when he tells her I'm on the line. She's excited I've called because she would like to invite me to her baby shower. It is still months away, but she tells me to please check my calendar.

I'm flattered.

I realize I am a little flushed. I'm suddenly holding back tears. We've been through much heartache together. She was wary and untrusting when we first met. I was skeptical and detached. But we both stepped out of our comfort zones for the good of three small children. I am proud of her for making positive changes in her life. I am nervous with her... and for her. There are so many emotions tangled up in our relationship... but now our tenuous threads of hope have blossomed into love. Before I can even voice my thoughts I hear her say it first. "I love you."

This messy, unconventional, patchwork family we've built is growing again.

We're celebrating a new life, and we're celebrating a life reclaimed.