No Ribbon for Alexa

By Paula Scheider
 
The Eagle Globe and Anchor, the familiar yellow ribbon…The autism awareness emblem: the iconic blue puzzle piece.
 
Take a look at my fridge, my wardrobe, our home and you will see these reminders everywhere. Perhaps it is a remnant of my Catholic upbringing but I tend to surround myself with symbols of what is dear to me. I need no reminder that my son Jay is a Marine or that my daughter Fiona has autism but I do need to be reminded at times that we are all part of a larger community who shares my experience. One thing I have learned in my extensive autism education this year is that I am classically NT (neuro-typical)- I need to belong to society.
 
My daughter Alexa understands this. No surprise, considering that Alexa at 11 years old is one of the most empathetic human beings God created. Empathetic, considerate, open-hearted, giving … and astute.
 
Witness her observation as she stood in front of the fridge and inventoried the various magnets:
 
There’s no ribbon for me.
 
This was said without a shred of self-pity or anger. No jealousy or assigning of guilt. It was as matter of fact as if she had just announced we were out of milk.
 
There’s no ribbon for me.
 
I immediately pointed out that the majority of the artwork was in fact, hers and she shrugged. “I know,” was all she said.
 
“And look how many pictures of you we have,” I stumbled on.
 
“Mom, I know,” Alexa smiled. “I know you love me and all that. I just noticed there’s no ribbon for kids like me, that’s all.” And the subject was dropped and she went on with her life.
 
It haunted me for days. Kids like me … are there ribbons for gifted kids? Children with special needs siblings? Middle siblings? Children who handle divorce and multiple households? Finally, I asked her.
 
“It’s no big deal, Mom” was her answer.

“Really?”

“Yes, really.” Alexa shrugged. “I only mentioned it because I noticed it. It’s not a big thing to me.”
 
And while I believed her, it was a big deal to me. Ever since Fiona’s diagnosis and Jay’s deployment, I had been conscious of Alexa’s feelings. Here she was, with a hero big brother and a baby sister with autism and I didn’t want her to get lost in the shuffle. Add to that her family dynamic at her father’s home, where she is the big sister to two darling – and new – little brothers. Her bonus mother and I had discussed it and together we worked to make sure that Alexa felt loved and important and unique. Both her father and Eric make special time for her and treat her like a princess. At school, her only transgression seems to be talking too much and trying to take care of everyone. In my heart, I know Alexa is secure and I am grateful.
 
But this ribbon thing nagged at me. It wasn’t that Alexa felt neglected or unimportant – it was that there was no symbol of her. No symbol of the selflessness she displays. No symbol of the joy she inspires in all of us, no symbol of her frustrations and fears and anger. At a glance, our family appears to have two heroic children when in fact, there are three. And that made me think – there must be so many “kids like me” out there, kids who live with and love a child with special needs, kids who have to worry about a faraway war, kids who feel confused and left out at times and guilty for being normal. Kids who need to love others almost as much as they need to be loved. Kids who love and resent having siblings who are different. Kids like my Alexa.
 
Alexa’s ribbon would have to be pink, for her boundless love. Pink like the flowers, like the lip gloss she can’t live without, pink like her cheeks after a giggling fit. Pink because while she is one tough cookie, Alexa is all girl.
 
And it would be purple, because purple is fun and festive and alive. Purple is for royalty and Alexa is our princess. Purple stands out in a crowd. It would be tie-dyed with all different shades of purple and pink because Alexa is funky and stylish and never takes herself too seriously.
 
And most of all, there would be glitter, because even in a dark night, Alexa sparkles.
 
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.