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The Mom Giving A Voice To Her Nonverbal Son
Story from Dedicated Feature
Meet The Mother Changing The Conversation Around Autism
Eliza Dumais
Refinery29 is proud to team up with Mailchimp to celebrate the brand's podcast series, Going Through It, in which women of note shed light on the seminal struggles in their lives — and how they've emerged triumphant. Ahead, meet one woman who embodies this very strength.
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Eileen Lamb speaks in a way that is near impossible to imitate. Her syllables come out rounded and quiet, with guttural French Rs and a Southern lilt that makes each sentence undulate. It's like Paris and Austin are competing for space in her dialect.
A native of France, Lamb first arrived in Texas at 21, working as an au pair. Less than a decade later, she was married with two children and a tudor house in South Austin. Since then, she's hardly left. "I don't travel much because of my son," she tells me in a hotel room in Midtown Manhattan, tugging apprehensively at the ends of her sleeves. This is her first time traveling alone in more than six years.
Charlie, the oldest of Lamb's two sons, has nonverbal autism — a form of autism spectrum disorder (ASD) that prevents him from speaking.
"When he was still a toddler, all of a sudden, Charlie just stopped talking. He said a few words and he just stopped. Stopped looking at us. Didn't want to be around other people. Was in his own world," she says.
Around this same time, Lamb began to write. She built a blog as an outlet — a means of communicating candidly in the ways she couldn't with her son. Now, four years later, The Autism Cafe has more than 160,000 Instagram followers — and Lamb has become something of an icon for parents of children with disabilities across the country.
As a whole, ASD is a neuro-developmental condition that makes communication or social interaction particularly difficult. There are no standard-issue signs or symptoms of autism. According to the CDC, one in every 59 children is diagnosed with ASD, and it's possible that for each of them, the condition manifests in entirely different ways — there are those who have learned to navigate public spaces with comfort, along with children like Charlie, who cannot speak at all.
"For the most part, Charlie screams when he needs something. He can't use words, so even if it's something as simple as a mosquito bite, he can only scream," Lamb says. "As a mother, it is so hard to know your son needs something and to have absolutely no idea what that thing is."
"But you know when he's happy because he starts jumping and clapping his hands. He just looks like he's about to fly, he flaps them so hard. It's amazing."
In the hotel room where we are photographing Lamb, I watch as she extricates herself from the makeup artist and takes a seat on a couch positioned behind the photographers and the stylist, briefly folding into herself — curling her shoulders inward — before she's called back for the next shot. "Social situations can be really hard for me," she tells me later, by way of explanation. "There were a lot of people in there — I got overwhelmed."
Like Charlie, Eileen Lamb has a version of autism spectrum disorder. While undiagnosed as a child, she began to recognize some of her own tendencies in Charlie's when specialists gave names to his behavioral patterns.
"After [Charlie] was diagnosed with autism, my mom kept telling me that [the diagnosis] wasn't possible because I had been the exact same way as a child," Lamb says. "I started reading about autism in adults, and then I decided to go through a therapeutic assessment — 20 hours of testing with a doctor."
When Lamb received her own autism diagnosis, it came with a sense of relief. In some way, she tells me, she was comforted to know that the very social hesitancy that had disenfranchised her growing up now served as her entry into a larger community.
But for all the reasons her own ASD confirmation provided access to a broader circle, she still found it largely impossible to connect with other parents when it came to mothering a son with autism, too.
"I started [writing] on a hard day with Charlie," she explains. "[My husband and I] took him to a therapy autism center for a Halloween party, thinking he might make some connections with other kids. But even among other kids with autism, he was still very much different. The other kids could communicate and interact and he was just screaming — I felt so lonely."
That evening, Lamb drafted her thoughts into a post that she published onto her Facebook feed. Soon after, comments began to trickle in. And then they came by the hundreds.
The responses were gratifying, Lamb tells me. But for her, they were merely second to the realization that writing was precisely the outlet she needed. It was where she found she was most articulate, most capable of finding ways to frame her experience with Charlie. Through her posts, she gave language to a complex version of motherhood — one that was primarily concerned with the absence of words.
For the first time, I felt like other people knew what it was like to be inside my head.
Neither a mommy blog nor a decidedly medical resource, The Autism Cafe is Lamb's hub for advice on things like identifying autism in children or effectively decorating a bedroom for a child on the spectrum. It's her place to vent about the particularly hard days or to comment on the language we use to frame both children and adults with autism.
"I have a hard time communicating [socially] with spoken words. Writing feels so much simpler," she says. "But at the same time, it reaches so many more people."
When she first built her blog, the audience reception was even greater than she could've predicted. Mothers of all kinds, mental health advocates, and even children reached out with questions and affirmations of sisterhood. "For the first time, I felt like other people knew what it was like to be inside my head," she says. "[The blog] made me feel less alone."
For all the reasons Lamb had previously felt othered by the very act of raising Charlie, she now found herself at the center of a circle brought closer to her because of Charlie's condition. "People will comment and start conversations. They remember Charlie's birthday and they reach out to me. They offer me tips or thank me for the advice I've given them," she explains. "[The blog] makes me feel like my family has a support system."
Lamb doesn't know that she'll ever hear her son put together a sentence. But what she does have, in the interim, is the opportunity to speak for her and Charlie, both, through the platform she's created online. A small bit of agency, amidst a whole lot of ambiguity.
"I spend a lot of time wondering how to be a good mother when there's no textbook for scenarios like this," she explains. "All I can do that's tangible is write down how I feel."
Her next project — a full-fledged book — is set to publish next year. As she describes it, it's a personal stab at the parenting handbook she never had: It is her experience raising Charlie, on paper, framed in ways she hopes other mothers will find useful.
"After my book, I've been thinking about writing a screenplay," she muses. "There are so many TV shows that show motherhood in really honest ways, but I haven't seen anything yet with a child whose condition is as severe as Charlie's."
She is momentarily quiet when I ask what comes next for Charlie. "We take it one day at a time," she offers. "There's so much uncertainty about Charlie's life and what it will be like. Will he be able to talk? Make friends? Take care of himself? I just want him to find a way to communicate, even if it's in sign language and I never get to hear his voice."
I spend a lot of time wondering how to be a good mother when there's no textbook for scenarios like this.
Research has suggested that some children diagnosed with autism can go several years without forming full sentences, only to learn to speak in their adolescent years. Others will gain and lose their sense of language at different stages. A recent study from Boston University asserts that nearly one third of people with autism spectrum disorder "never learn to speak more than a few words."
Still, even for children with nonverbal autism, a capacity for communication is never entirely out of the question. "Nonverbal does not mean noncommunicative," the Autism Speaks Autism Treatment Network (ATN) states. Some children may begin communicating with abstract symbols or concrete tools, while others will respond to gestures or forms of sign language. There are brands of music therapy and a potential for written communication. But Lamb also understands that nonverbal communication has its own power.
"I write better than I speak," she says, "so Charlie and I have that in common. We communicate silently."
In the hotel's lobby bar, killing time before her flight back home, Lamb scrolls through photos of Charlie and his younger brother on her laptop, explaining where and when each was taken. For the most part, the faces in the photos grin at the camera, squeezing one another in the clunky, affectionate way that is common among little boys. She smiles. "I'm looking forward to getting back," she says. "But for a little while, it felt good to have someone else take pictures of me. I'm usually the one doing all the documenting."
I tell her I am going to write that down.
We aim for inclusivity in all our stories, and our goal is to let women from all walks of life share their own personal experiences. We appreciate your feedback and have changed some of the wording in this piece. We recognize that everyone has different experiences in life and look forward to exploring more of them.
Parenting Children With Autism & Learning To Cope
Dedicated Feature • Living • Mental Health Awareness • The Latest
written by Eliza Dumais
photographed by Molly Matalon; styled by Tess Herbert; hair & makeup by Timothy Aylward at Atelier Management
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Florida vs. Florida State: 10 Greatest Clashes of All Time, Ranked
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John Duffley, July 10, 2020 1:39 pm
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Screenshot from YouTube
The 2019 College Football Hall of Fame class was officially inducted at the 62nd National Football Federation Annual Awards Dinner on December 10. If you're like me, reading the list of inductees invokes memories from some of the game's greatest icons. From Texas quarterback Vince Young to USC safety Troy Polamalu, the list is truly remarkable, but one name jumps way off the page for die-hard Florida State Seminoles fans in Tallahassee and beyond.
Former FSU defensive back Terrell Buckley was, in short, a complete nightmare for opposing offenses. The two-year starter and three-time letterman terrorized quarterbacks on his way to setting multiple records at the school and NCAA level, many of which still stand today.
Florida State's Terrell Buckley
Welcome to the College Football Hall of Fame – @FSUFootball legend Terrell Buckley (@27TBuck)! pic.twitter.com/CcASDJ0xAn
— Football Foundation (@NFFNetwork) December 11, 2019
The pride of Columbia, Mississippi led Pascagoula High School to the 1987 state championship before taking his talents to Tallahassee. Playing for Bobby Bowden, Buckley is still FSU's all-time leader in interceptions (21) while tying school records with four INT returns for touchdowns and three punt return touchdowns. Buckley was a two-time All-American, won the 1991 Jim Thorpe Award as the nation's top defensive back, and finished seventh in Heisman Trophy voting that same year. (If all that wasn't enough, Buckley also played baseball and ran track for the 'Noles.)
Buckley's 501 career interception return yards are still the NCAA record.
The fifth overall pick of the 1992 NFL Draft played 14 years of professional football with the Green Bay Packers, Miami Dolphins, Denver Broncos, New England Patriots, New York Jets and New York Giants. Buckley picked off at least one pass in 13-straight seasons, retiring with 50 for his career, and won Super Bowl XXXVI as a member of the Patriots.
"T-Buck" was inducted in the FSU Sports Hall of Fame in 2003, and his No. 27 was retired by in 2011.
Terrell Buckley on Hall-of-Fame Induction
"It's awesome [going into the HOF] with some other guys I played with. I played with Derrick Brooks and Charlie Ward, who's in the college hall of fame. Those memories of putting on that garnet and gold, and being in Tallahassee and running out of that tunnel with those guys, now we can laugh and talk about that. All of us are still in contact with each other. They are sending texts and congratulations, the same way that I did for them. It is a little surreal that all this is happening and it has happened to a bunch of guys I know."
— Terrell Buckley, via Warchant TV
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Buckley's Pick-Six Against Michigan, 1991
Ask any Florida State fan who fell in love with the 'Noles in the 1990s and they'll tell you one Buckley interception stands out from all the others: The pick-six vs. Michigan in 1991.
The second play of the game set the tone for No. 1 FSU's 51-31 win over No. 3 Michigan. Wolverines wide receiver Desmond Howard, who went on to win the Heisman Trophy that year, trotted out wide. When UM quarterback Elvis Grbac tossed a quick pass toward him, Buckley broke instantly and jumped in front of Howard, leaving him on the ground.
To rub it in even more, T-Buck taunted Michigan players then jumped into the Florida State fans' section. Legend.
Where is Terrell Buckley Now?
After beginning his coaching career at FSU, Buckley served as cornerbacks coach at Akron, Louisville, and has held the same position at Mississippi State since 2016. Buckley's mentored All-SEC talent like Jamal Peters and Jaire Alexander, and according to his MSU football bio, 13 of Buckley's prodigies have signed professional contracts.
Buckley's impact at Florida State still resonates inside Doak Campbell Stadium, but the veteran mind isn't done teaching his game-changing tricks to the next generation of football players in one of the college football's best defensive units every single year.
This article was originally published December 11, 2019.
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About the author: John Duffley
John joins the FanBuzz team with five years of experience freelancing as a sports writer for TheDupes.net and Football.com. A graduate of Penn State University, John currently lives and works in Austin, Texas. He is also a member of the Football Writers Association of America (FWAA).
Desmond Howard
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Carbon nanostructures - elixir or poison?
(Nanowerk News) A Los Alamos National Laboratory toxicologist and a multidisciplinary team of researchers have documented potential cellular damage from "fullerenes"—soccer-ball-shaped, cage-like molecules composed of 60 carbon atoms. The team also noted that this particular type of damage might hold hope for treatment of Parkinson's disease, Alzheimer's disease, or even cancer.
The research recently appeared in Toxicology and Applied Pharmacology and represents the first-ever observation of this kind for spherical fullerenes, also known as buckyballs, which take their names from the late Buckminster Fuller because they resemble the geodesic dome concept that he popularized.
Engineered carbon nanoparticles, which include fullerenes, are increasing in use worldwide. Each buckyball is a skeletal cage of carbon about the size of a virus. They show potential for creating stronger, lighter structures or acting as tiny delivery mechanisms for designer drugs or antibiotics, among other uses. About four to five tons of carbon nanoparticles are manufactured annually.
"Nanomaterials are the 21st century revolution," said Los Alamos toxicologist Rashi Iyer, the principal research lead and coauthor of the paper. "We are going to have to live with them and deal with them, and the question becomes, 'How are we going to maximize our use of these materials and minimize their impact on us and the environment?'"
Iyer and lead author Jun Gao, also a Los Alamos toxicologist, exposed cultured human skin cells to several distinct types of buckyballs. The differences in the buckyballs lay in the spatial arrangement of short branches of molecules coming off of the main buckyball structure. One buckyball variation, called the "tris" configuration, had three molecular branches off the main structure on one hemisphere; another variation, called the "hexa" configuration, had six branches off the main structure in a roughly symmetrical arrangement; the last type was a plain buckyball.
The researchers found that cells exposed to the tris configuration underwent premature senescence—what might be described as a state of suspended animation. In other words, the cells did not die as cells normally should, nor did they divide or grow. This arrest of the natural cellular life cycle after exposure to the tris-configured buckyballs may compromise normal organ development, leading to disease within a living organism. In short, the tris buckyballs were toxic to human skin cells.
Moreover, the cells exposed to the tris arrangement caused unique molecular level responses suggesting that tris-fullerenes may potentially interfere with normal immune responses induced by viruses. The team is now pursuing research to determine if cells exposed to this form of fullerenes may be more susceptible to viral infections.
Ironically, the discovery could also lead to a novel treatment strategy for combating several debilitating diseases. In diseases like Parkinson's or Alzheimer's, nerve cells die or degenerate to a nonfunctional state. A mechanism to induce senescence in specific nerve cells could delay or eliminate onset of the diseases. Similarly, a disease like cancer, which spreads and thrives through unregulated replication of cancer cells, might be fought through induced senescence. This strategy could stop the cells from dividing and provide doctors with more time to kill the abnormal cells.
Because of the minute size of nanomaterials, the primary hazard associated with them has been potential inhalation—similar to the concern over asbestos exposure.
"Already, from a toxicological point of view, this research is useful because it shows that if you have the choice to use a tris- or a hexa-arrangement for an application involving buckyballs, the hexa-arrangement is probably the better choice," said Iyer. "These studies may provide guidance for new nanomaterial design and development."
These results were offshoots from a study (Shreve, Wang, and Iyer) funded to understand the interactions between buckyballs and biological membranes. Los Alamos National Laboratory has taken a proactive role by initiating a nanomaterial bioassessmnet program with the intention of keeping its nanomaterial workers safe while facilitating the discovery of high-function, low-bioimpact nanomaterials with the potential to benefit national security missions. In addition to Gao and Iyer, the LANL program includes Jennifer Hollingsworth, Yi Jiang, Jian Song, Paul Welch, Hsing Lin Wang, Srinivas Iyer, and Gabriel Montaño.
Los Alamos National Laboratory researchers will continue to attempt to understand the potential effects of exposure to nanomaterials in much the same way that Los Alamos was a worldwide leader in understanding the effects of radiation during the Lab's early history. Los Alamos workers using nanomaterials will continue to follow protocols that provide the highest degree of protection from potential exposure.
Meantime, Los Alamos research into nanomaterials provides a cautionary tale for nanomaterial use, as well as early foundations for worker protection. Right now, there are no federal regulations for the use of nanomaterials. Disclosure of use by companies or individuals is voluntary. As nanomaterial use increases, understanding of their potential hazards should also increase.
Source: Los Alamos National Laboratory


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SANTA CLARA, CA—(BUSINESS WIRE)—Advanced Cardiac Therapeutics, Inc., ("ACT" or the "Company"), a medical device company focused on developing a next-generation ablation catheter to treat cardiac arrhythmias including atrial fibrillation, today announced $45 million in new equity funding led by Ajax Health ("Ajax") alongside existing investor New Enterprise Associates ("NEA") and new investor Questa Capital Management ("Questa").
Atrial fibrillation is a condition in which the heart beats irregularly due to improper electrical impulses, and is one of the most prevalent heart diseases globally, currently affecting an estimated six million people in the U.S. alone. The irregular heart beat can lead to increased risk of stroke and significant diminishment of quality of life for individuals affected. Catheter ablation for atrial fibrillation has been demonstrated to be a safe, effective, and economic treatment, and is one of the fastest growing medical device markets today.
ACT's novel catheter ablation system, which includes the Company's proprietary DiamondTemp™ Catheter, DiamondTemp™ RF Generator, and integrated fluid Irrigation Pump, is the first of its kind to combine temperature control, contact sensing, and high resolution electrogram recording to treat atrial fibrillation through a minimally invasive approach enabling faster and safer procedures with improved clinical benefits. The Company will use proceeds from the financing to pursue a global clinical development program and earn regulatory approvals for use of ACT's portfolio of products in Europe and the U.S.
"ACT's continued impressive progress in building a highly differentiated, next generation solution for catheter ablation has been remarkable. We are equally enthusiastic to welcome Ajax and Questa as our financial partners in supporting the ACT team's efforts to take the treatment of atrial fibrillation to a new level," said Justin Klein, MD, a partner at NEA and ACT board member.
Representatives of Ajax and Questa will join ACT's Board of Directors.
With the financing, the Company also announced that Dr. Philippe Henri Marco has been named President and Chief Operating Officer of ACT. Dr. Marco has more than 20 years of leadership experience in medical device technology, including in-depth knowledge of the interventional cardiac and endovascular fields, as well as experience in product development, manufacturing operations, regulatory strategy, clinical trial coordination and management, marketing, and sales training.
About Advanced Cardiac Therapeutics, Inc.
Advanced Cardiac Therapeutics, Inc. is a medical device company that designs and manufactures a catheter-based system for the treatment of patients with atrial fibrillation and other cardiac arrhythmias. Atrial fibrillation is characterized by an irregular, often rapid heart rate. The Company's mission is to dramatically improve the treatment of this disease through the introduction of novel products based on its proprietary technology. ACT's DiamondTemp™ technology is the only system in the world to leverage four unique capabilities: temperature control, low irrigation flow rates, high resolution electrogram attenuation, and contact sensing. The ACT system is not currently approved for commercial use. For more information, please contact Marissa Bramlett at [email protected].
Ajax Health operates health care companies that address significant unmet needs by developing emerging medical device technologies. Founded in 2017, and backed by KKR and Aisling Capital, the company leverages its resources in sourcing and operations to drive better treatment outcomes. Ajax Health is located in Menlo Park, CA.
Questa Capital is a healthcare venture capital firm that invests in growth-stage healthcare companies. Founded in 2016, the firm is led by three senior partners: Ryan Drant, who previously led healthcare investing at NEA; Brad Sloan, previously a senior healthcare investor at Parthenon Capital; and Shawn Conway, a former senior operating executive at Andreessen Horowitz and NEA. Questa seeks out disruptive business models that improve lives and provide better quality and more efficient care. The firm partners with superior management teams to help build innovative market leaders. For more information visit www.questacapital.com.


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