As Fine as a Bee's Wing
By Lori Brozek
This morning I was cleaning the spam out of an old email account I no longer use and noticed an email from Theresa, an autism mom I lost contact with after she moved away years ago. The email was to some friends about a local incident. She must have accidentally included my old email address in her "Send To" list. It started me thinking about her daughter, Riley.
My son Kyle and Riley attended an autism pre-school class together. There were five boys in the class and Riley was the lone girl. She was severely affected, non-verbal and beautiful. Too skinny, almost frail with long dirty blond hair, Riley teetered when she walked. She had fine features, like Theresa. Delicate as a bird, Riley reminded me of the lyrics to a Richard Thompson song, "a rare thing, as fine as a bee's wing, so fine a breath of wind might blow her away". I'd pass her in the hall and I would sing, "Hey there, Riley-Girl", in my head to the tune of "Georgy Girl" as she went by.
Next to the classroom, parents were able to watch the session through a two-way mirror. Sometimes I'd stay and watch for a while and I'd see Riley, shaking the pom-pom she always carried around. She stared at the pom-pom as she shook it, appeared to be some type of visual stim. Once, she lost track of it and started getting upset. Kyle came to the rescue. He found the pom-pom and brought it to her. A moment of connection between the two that the teacher happily related to me later. When the weather was nice, the kids went outside to the playground. Riley wandered around, moving her fingers in front of her eyes.
I only saw Riley a few times outside of class. The first time, Theresa and I went to an Autism rally in Washington, D.C. and Riley came with us. We stopped at a gas station on the way and Theresa got out of the car. I turned to Riley in the back, too old to be in a car seat. "Hey Riley-Girl", I said, trying to make contact. But she was lost and didn't seem aware that I was there. She stared out the window. I started to cry and looked around, as if I was trying to find something that would make sense of this for me. I got myself together before Theresa got back in the car.
Once, she came to Kyle's birthday party. After cake and presents, we took the kids to a nearby playground. While talking to Theresa, I noticed Kyle and Riley walking behind the swingset. Kyle put his face close to Riley's and laughed. I think he was trying to make eye contact -- perhaps something he saw the teacher do in class. When he did it, Riley smiled shyly and looked away, laughing. They walked on and did it again. And again. And again. I watched them as if caught in one of those moments when the world is as it should be an ordinary mom, watching ordinary kids. A hopefulness crept in. Maybe the future would not be so bleak.
Eventually, Kyle left for kindergarten and I lost touch with Theresa and Riley. They moved to a another state as did I in search of better services for Kyle. Every once in a while Kyle would bring up the name of one the kids in that class and I'd ask him if he remembered Riley. Over time I came to realize that somehow Riley embodied for me the Autism tragedy, even more so than my own son.
Last week, when we were in Chicago at Autism One, a friend marveled at how Harry and Gina Tembenis stayed involved in the Autism cause long after losing their son to a seizure. I told her that if our kids recovered tomorrow we'd still be part of the community because we'll never get over it. We'll never get over what happened. We'll never get over what was lost. Never get over this sorrow. A sorrow so deep, I'll never touch bottom. And Riley. I'll never get over that Riley-Girl. Delicate as a bird. A rare thing. As fine as bee's wing. Fine.
Lori Brozek is a mother of three, including a 13-year old son with Autism. She works for the IRS and is Treasurer of the National Autism Association.
This is "Riley's" Mommy and I am so touched by this beautiful essay. Thank you for sending me this link. It made me cry. She is now 14 and is exactly the same as you describe and remember. Fine as a bees wing, to this day :)
This was so beautiful!! :)
Posted by: Alicia D. | December 30, 2009 at 10:09 PM
Kevin that's a great story. Thank you for sharing it.
Posted by: Andrea | June 05, 2009 at 12:11 PM
You know, I'm late coming to this party. I have a story that I will never forget.
I was at the doctor's office one day with my wife and son. I was standing outside watching my son in front of the office stim. Another couple parked and were walking up to the office when we striked up a conversation. Nothing exciting but their son, Sean, ran up to me and gave me a huge hug around my legs. He looked up at me with his big blue eyes and blonde hair and smiled. In that instant, I knew I connected with him on a quiet, intenese level I have never had with another child besides my own son. It felt like it lasted for minutes - I have no idea how long it really lasted, but long enough for the parents to quickly snap a picture of it. Sean is nonverbal and has symptons like Riley. His parents cried. He's just not that affectionate with them and to see him hug another like he did - wow. Ok, I'm crying just thinking about it again.
If you could've only seen that picture. He's a beautiful boy with lots of potential. I have never seen Sean or the parents again, but he will live forever in my heart and prayers.
Posted by: Kevin D | June 05, 2009 at 10:45 AM
I am tired today, struggling with some volcanic temper tantrums and non-verbal frustrations. Your story breaks my heart because it resonates in me that we, the parents, are the only ones recognizing and feeling the struggles someone else is having. My son's recovery, whenever that day comes, will leave me crippled with imagery of all the little Riley's, Ben's, Kyle's whose been separated from the world we live in, and how they stare and smile at a world we will never understand. How I long for someone outside my world, Ben's world, to recognize us, come up and give us a hug and tell us their hearts are breaking along with us.
Posted by: bensmyson | June 04, 2009 at 01:12 PM
Thanks for writing this. The part about what it must be like for parents of typical children hit home with me. I have those flashes every now and then with my daughter. It fills me with hope when that happens.
"A sorrow so deep, I'll never touch bottom." That was so eloquently said and so very true. I have felt this way myself, as if I am drowning in it. Then I just get it together and soldier on.
The article was great. I only wish we knew how Riley was doing.
Posted by: chloesmom | June 04, 2009 at 01:06 AM
There's a million heartbreaking stories in the big Autism City. Thanks for sharing yours and reminding us all of our own. Very eloquently written.
Posted by: Heidi R | June 03, 2009 at 09:41 PM
Thank you for sharing!! I always say, one of the finest gifts our children bestow on us is each other. For that I am eternally grateful.
Posted by: Lin | June 03, 2009 at 09:13 PM
Beautiful Lori, thank you. Even though my son is much like Riley, conversationally non verbal, loves to look at his hands, etc..I also have a 'Riley' that I see here and there and have profound feelings for as well. His name is Matthew and he does not have any words, few sounds, but there are moments he looks in my eyes, when I tell him I've missed him, that I can feel him calling for help. We are often so busy fighting for our own children that we don't have time to reflect on the sadness of it all, nor do we have the emotional strength to live in the acute awareness of our own situation constantly. When I see Matthew it rushes in and takes hold strongly. You've reminded me that it's time to make plans with his Mom again. Thank you..
Posted by: Allison Chapman | June 03, 2009 at 07:55 PM
My son Riley is very simular to your Riley-Girl. My Riley is frail, fragile, thin to the point of...well I can put my fingers around every extremity on his body. I'm 5'1" tall and I have small hands but yet I can circle his ankles and thighs with my fingers on one hand. His arms are so skinny. His eyes have dark circles and a sunken in look to them. If any of you remember the story "The Christmas Carol"? When the ghost of Christmas present lifts his robes to reveal the twins? That's my Riley.
My sister in law calls him see through. His is so pale.
Most of the time, Riley is lost in his world and it is a miracle to watch him come into our world. It's everything I live for. In those moments...I look at Riley and tell him..."Mommy loves you and I believe in you." I know he hears me. I can see it in his eyes.
Thank you Lori for writing this story. Even though it was hard for me to read. I do hope that you get in contact with Theresa again. I know that WHEN I recover my Riley I will never leave "our" family. There are so many more that need help.
Posted by: rileysmom | June 03, 2009 at 06:13 PM
Beautiful and true in my life, too! Thanks Lori, for such a touching and enjoyable read.
Posted by: Teresa Conrick | June 03, 2009 at 06:10 PM
Your story was so touching... it reminded me of all of the sweet wonderful children I have met as I have travled this journey with my son Andrew. Some of them really touched me, leaving their imprint on my heart.
Andy was also touched by many children too, but these children were the typical neighborhood kids. The ones who played next to Andrew in the backyard or park, when he was in what we thought was a world of his own. 20 years later Andy still recites their names and the names of their parents (more often than I would like because it hurts my heart) "where's Jonathan, where's Kyle, Where's Kellie, Where's Jonelle, Where's Megan, Where's Nancy, Where's Mark, Where's Catherine, Where's Carole... he goes on and one and on...
Posted by: Jan | June 03, 2009 at 04:46 PM
Beautiful Lori, absolutely beautiful. Thank you so much for sharing your 'Riley-Girl' memories with us. I hope that her mother still carries hope in her heart for her daughter and is finding the recovery we all seek for our children.
Posted by: Kecia | June 03, 2009 at 11:25 AM
Beautiful writing, Lori. Thank you for sharing your reminiscences of Riley. There is a lovely intuition many of our children share -- safe spaces for their delicate spirits. How rewarding that you were there to witness it.
Posted by: nhokkanen | June 03, 2009 at 10:54 AM
Incredibly moving. I felt like I was in that car with you and Riley. Thank you for introducing her to me. Beautifully written. Lori - write more!
Posted by: Kelly | June 03, 2009 at 10:24 AM
Yesterday was a tough day for me. I slept horribly the night before and had frustrating moments most of the day. My bad mood didn't smooth things over. At prayer time last night, Ronan didn't want to cooperate like he had been all last week--even got to "In the name of the Father AND the Son" for our sign of the cross last week several times. Last night he was stimmy, loud, constipated again and just on high energy. I was tucking in my older kids in the room next door when I thanked them for helping Ronan at home since he'll be home more with summer vacation starting. I never bring up the tough side of raising Ronan with my fears and emotions but I did to my five and seven year olds. I asked if they could help Ronan more and help me by being great siblings to him. My five year old said, "Maybe you should pray about it, Mommy.' I wanted to cry right then and there. We stopped doing our right-before-bed clean up and prayed what has become my own nightly Dear God, please help Ronan and his recovery prayer.
My very wise and most helpful typical kids knew it was time to let go but to keep that hope too. I pray that other families and affected kids stay strong since it will take our community to turn things around.
Posted by: Cathy Jameson | June 03, 2009 at 09:21 AM
Thank you for this beautiful story.
Posted by: Deb in IL | June 03, 2009 at 09:04 AM
My son is completely recovered and I'm still here. Once you are part of this club you never forget.
Posted by: Diane Farr | June 03, 2009 at 08:23 AM
Each night my husband says prayers with the girls. And Mia's prayers always include: RJ, Natasha, Patrick and Miss Joan and Miss Judy. Her first developmental preschool classmates and teachers from the Bucks County IU. I think of those kids all the time and wonder what happened to them. Natasha was a twin with a typical sister. So many of the kids have touched, broken and healed my heart.
Posted by: Stagmom | June 03, 2009 at 07:59 AM
Thank you Lori for this beautifully written moving piece about Riley. (thanks for the cry).
Did you make contact with her mother Theresa after you found the e-mail? I hope so. None of us can never have too many friends who understand this thing called autism.
My son is 13 as well, and I have lived in an another state when he was younger. I still have those friends who were such an important part of my and my families life when my son was younger. Some of their kids are doing better then my son today, some worse, some about the same. But, we all know and love each others kids, and care about them tremendously, and always will.
Posted by: Andrea | June 03, 2009 at 07:55 AM