Home > Family Services > No Ribbon for Alexa

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.

  1. Brenda Carroll
    November 10, 2011 at 4:58 pm

    Lovely post. I also have a child who often feels left out when so much attention and angst is all about her special needs brother. I think Sarah’s ribbon would have to be green for her Irish Dancing, red for her special loving heart, and polka dots and stripes for all her contradictions (and the combination would match her bizzare clothing choices). Thanks for helping me focus on “the other one” today.

  2. November 10, 2011 at 5:19 pm

    I am a mom of a daughter with Aspergers. I am currently 7 months pregnant with our second child, another little girl. I have wondered through this whole pregnancy, who will she be. Will she live her life along side a sister with ASD, or will she walk hand in hand with her sister because she too will have ASD. Only time will tell. But one thing I know, both my daughters will know that they are special and loved and will each know that they are individually worth so much to all that know and love them. Thank you for this story. It was an encouragement to me, and I will keep in my mind your words as each of my daughters grow and become their own persons.

  3. roxy savage
    November 10, 2011 at 5:24 pm

    this was really inspiring. im the oldest sibling of four disabled children, and four without disabilities, and while i never felt left out of the mix, and neither did my brothers, my sister who is 14, i think would really get something out of this. i know she sometimes feels like being “normal” means being left out, and i hate her feeling that way. she understands that a disabled child needs more ‘attention’ if you will, but to me, shes absolutely perfect, and so are all my other siblings, disabled or not. i feel like in her mind shes resigned herself to not being ‘special’, because she doesnt need extra help. i want her to read this so maybe she can understand that she is special too.

  4. November 10, 2011 at 5:41 pm

    Paula,
    A beautiful post. Just beautiful. My son who is eight years old has autism. My daughter who is six years old is typically developing. I think she too would have a pink, purple and sparkly ribbon. Thank you for your insight and honesty.

  5. Roxanne Witt
    November 10, 2011 at 5:49 pm

    What a lovely post. i remember worrying about my 3 older children as I was raising my youngest who has Autism. They have grown into amazing adults… with much patience, empathy, common sense and selflessness. They deserve medals of honor for all they did and all they gave for their sister. I’m sure much of her happiness and sense of self comes from being in a loving, accepting, all embracing family with her siblings.

  6. Laurie
    November 10, 2011 at 5:52 pm

    I understand. My oldest daughter suffered since age 7 with a mental illness, and was constantly hospitalized, we adopted a child who is doing okay, but adoption comes with issues, then there is my “middle” child, who has had to become in some ways the oldest. She always says, it’s okay mom, and it breaks my heart. Then I think, well, the gift she has received is one of acceptance, courage, and advocacy. I think I’d give her a purple ribbon, one of healing and peace. I wish for healing and peace for all your children as well. OH, and Roxy, I do hope your sister feels special, because she is. We all are. And what is “normal” anyway, lol. My favorite saying, “Different doesnt mean less”……

  7. La Rae Cupp
    November 10, 2011 at 5:59 pm

    I think that is a beautiful idea I am a mother of 5 children.The oldest is a straight A student, the second oldest is very athletic,the two youngest are autistic and my middle child, well at times he feels a bit left behind through our hectic schedule. Now I have a great way to remind him of just how wonderful he is.
    For that I THANK YOU

  8. Bebe
    November 10, 2011 at 6:17 pm

    This is amazing and filled my heart up. I too am a parent of a young man with Autism and he has a younger brother who comes to mind when I read this. I also work for a non-profit advocacy organization that prints a quarterly newsletter with stories like yours in it. I would love permission to be able to share this with all the Louisiana residents that we share our newsletter with. If you wouldn’t mind, can you please email me at beebs1111@att.net and let me know if it would be alright to reproduce your story with full credit to you of course. Thanks a mill for sharing.

  9. November 10, 2011 at 6:17 pm

    This is beautiful!! Thank you for sharing your life, your heart. I too have a home with three heroic children… two on the autism spectrum, two with juvenile diabetes, one with epilepsy. My daughter not-on-the-spectrum sometimes says, “It’s hard being the only one who doesn’t have autism, ” but she has been such a hero, such a blessing to her brother and sister. She loves beyond different. Thanks again… this echoes so many of my own thoughts!

  10. Mel
    November 10, 2011 at 7:18 pm

    Beautifully written – all parents with both typically & non-typically developing can certainly relate, and may I say as a child of divorced parents you are giving your children such a gift to allow them to bond to their step-parents so readily – love love *love* the term “bonus mother”…

  11. November 10, 2011 at 10:23 pm

    Very powerful, thank you for sharing.

  12. November 11, 2011 at 4:26 am

    This is a great post. Yes, it can certainly be hard for special needs siblings. I love the idea of a purple tie dye ribbon that sparkles – I love purple, and tie dye. Maybe you can make one for her =) I read a lot of autism blogs, and the topic of siblings comes up again and again. Are you aware of Sib Shops, which is what I believe is a national network of support groups for special needs siblings? It gives them a space to vent their feelings and talk to others in their situation. For more Asperger’s and autism resources, one site I like is http://www.aspergerssociety.org/articles/support.htm . Thank you for writing such a beautiful article!

  13. Issa
    November 11, 2011 at 4:53 am

    I love this post because I can relate. In our living room everyone in the family except for me, and it really hurt me how they forgot to put me there. I once asked my mom why I didn’t have a picture there, and she just said that there was no space and it really made me sad. I guess she didn’t take what I said seriously, unlike you.

    http://issabelaespinoza.wordpress.com

  14. November 11, 2011 at 2:07 pm

    Is there a ribbon for siblings who are also on the spectrum along with their sibling(s)? I know some people like that.

    Is there a ribbon for parents who are themselves on the spectrum along with their child(ren)? I know some people like that.

    Is there a ribbon for spouses who are on the spectrum along with their spouse — in other words, for people on the spectrum who married someone on the spectrum? I know some people like that … and two of them are my husband and I. What color is _our_ ribbon?

  15. November 11, 2011 at 5:00 pm

    This was beautifully written. I have an autistic brother and as an NT I completely understand and appreciate your insight into both your children. Your vital and important words resonate with me and are a useful tool to help educate both the public and people whose lives have been touched by autism. Thank you.

  16. November 13, 2011 at 10:56 pm

    I love this idea. I think it should be followed through. This is so very much wonderfully written. I love it. Most of my brothers and all of my sisters are NTs and one of my brothers is autistic. I myself am an Aspie. So I can understand both sides (I guess) to the best of my ability.

  17. December 24, 2011 at 9:58 pm

    Wow! What an amazing story! I could feel the anguish and often worry about my grandson, who currently lives with us feeling left out. He has PDD and Epilepsy, however his older brother who also lives with us has severe Austism and often gets more of the attention out of need. Your story has given me hope that there are simple ways of reaching out to him.
    Thank you!

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