Exciting news!
I have been asked to be a guest on The Sociable Homeschooler internet radio show this coming Friday, Jan 31st at Noon CST. I’m thrilled to get to participate in Vivienne McNeny’s 206th show! Vivienne is going to ask me about our decision to pull Ethan from public school and how homeschooling a “2e” child works for us (2e=Twice Exceptional, meaning Ethan lives with Asperger’s Syndrome and is also considered Gifted & Talented).
We’re also going to talk about my writing (especially my published Children’s Book – ALL BETTER) and even plan to talk about how we incorporate Young Living Essential Oils into our lives. That’s a lot for a 1-hour radio show! Vivienne has already said, “…yes you may have to come back!” I’m looking very much forward to participating and feel quite honored to spend time with the gracious Vivienne!
So, Dear Readers, I wonder…will you listen in? I hope so! Here’s a link to the radio show site: http://toginet.com/shows/thesociablehomeschooler.

Posted by Leigh, filed under Advocacy, ALL BETTER, Asperger's Syndrome, Children's Writing, Education, Family, Health, Homeschooling, Twice Exceptional, Young Living Essential Oils. Date: January 28, 2014, 9:57 pm | 1 Comment »

Friends & Colleagues!

Great news came in the form of a picture book contract last week! My co-author, Summer Gibson, and I signed a contract with Skeezel Press for a picture book manuscript titled About Ella: Understanding Albinism. We are thrilled to be moving forward with this project and have plans to launch it next summer at the 2012 NOAH bi-annual conference in St. Louis!

Please stay tuned for additional information in the coming months!

Posted by Leigh, filed under About Ella, Advocacy, Albinism, Children's Writing. Date: June 27, 2011, 11:29 pm | No Comments »

*****Note: This post was originally published on October 7, 2010, on the former Dallas Moms Blog.*****

 

 

Connections make life rich. Each of us seeks to surround ourselves with people who have similar priorities and goals. Sometimes it is thanks to rather dire situations that we truly connect with others who change our lives forever.

 Jenny McCarthy, while on tour for her new book, Love, Lust & Faking It, took time out of her schedule Wednesday night to have a drink with a local group of moms (and a few dads, grandmothers and sisters) following a book signing at the Lincoln Park Barnes & Noble in Dallas.  Why? She graciously honored a connection that many local “Warrior Moms,” like me, have with her.

Let me be honest: Autism can be a very lonely place for families to journey. Especially in the beginning, after first receiving a diagnosis, many of us are so overwhelmed by responsibility (“I caused this” thoughts), shame (“I can’t control my own child” thoughts) and grief (“my child may never…make friends…have a meaningful, fulfilling job…get married…” and on and on kinds of thoughts) we don’t realize, (some of us for weeks, months or years) that we’re far, far from alone.

Jenny’s first book about her family’s personal journey with Autism, Louder Than Words, sparked some much-needed media interest in Autism Spectrum Disorders (ASD) and changed that “loneliness” for countless families battling ASD across the world. Jenny’s candid, heart-felt accounts of her son’s Autism and their family life in Louder Than Words garnered respect and attention from people from many walks of life. Her book tour talks with big hitters like Oprah and Larry King brought light and hope to many of us struggling with the Autism loneliness that sometimes clouds our wishes, thoughts and dreams.         

When Jenny sat with Oprah on the Louder Than Words book tour and described her all-out-battle to recover Evan from Autism, Oprah graciously called her a “Warrior Mom.” From that day forward, women all over the world fighting for the health and well-being of their children living with ASD, had a new “team” name thanks to Jenny and thanks to Oprah! Jennifer Keefe, a DFW-area mom had connected with and a group of like-minded friends sharing their journeys with ASD and decided that very day to name their group “Warrior Moms” in honor of Jenny and her dedication to healing children living with illnesses associated with their ASD.

Jenny’s second Autism book, Healing and Preventing Autism, co-authored with Dr. Jerry Kartzinel, specifically addresses biomedical treatments for children with ASD, in my opinion pushed our “team” up another notch. This easy-to-read book continues to raise awareness with the general population and offers fundamental information on biomedical treatments to help Warrior Moms in the trenches. Mother Warriors: A Nation of Parents Healing Autism Against All Odds, is a powerful tribute to the parents fighting to heal their children on a daily basis.

After my son Ethan’s Asperger’s Syndrome diagnosis, I was quite fortunate to find like-minded local mothers fairly quickly. These mothers and I connected and continue to connect in ways that have truly changed my life. Over the past 4 years I’ve met several members of a group of moms who meet regularly (in person and online) to exchange ideas on biomedical treatments, thoughts about other ASD therapies and suggestions for gracefully living a life infused with ASD…these are true Warrior Moms. With these moms I feel connected.

These mothers “get” why I worry for my marriage and “get” my concerns about my son’s social and emotional well-being. They truly “get” why my son didn’t sleep in his own bed through the night until very recently. They “get” why Ethan is on a strict GFCF (Gluten-Free & Casein-Free) and low-sugar diet with 15+ daily supplements and medications. They “get” it all because they, too, LIVE with ASD 7 days a week 24 hours a day. But more powerful than that – these fellow Warrior Moms (and a few amazing Warrior Dads) “get” my drive and passion to read more, learn more, implement more and do MORE to make sure my son is as healthy (and happy) as possible and that the world he lives in will be more and more gracious and accommodating to his needs and differences as time passes.

We share such a bitter-sweet bond. Without Autism we Warrior Moms may have never met, but I send BIG thanks to God on a regular basis that we did meet. I simply wouldn’t be as strong of a mother, researcher, mommy-doctor/nurse/therapist and teacher as I am to Ethan without my fellow Warrior Parents – Jenny included!

So, while I was certainly star-struck by Jenny  at Barnes & Noble and during her more private Warrior Mom Drinks/Q&A (she’s absolutely gorgeous and 100% authentic in person), I also felt right at home, comfortable and fully connected in a room of 50+ kindred spirits. Thank God that we are all in this together. Jenny accepted a toast in her honor by Jennifer Keefe and answered a few questions; some were related to cutting-edge technologies, some were personal questions about Evan and some were related to her plans for the future. Did you know that Jenny is going to have her own TV show next year? I’m eagerly anticipating the show and can tell you that Jenny has quite a nice fan base of Warrior Moms, certainly here in the DFW area, but I expect across the world!

In this journey, which I will admit still feels a little lonely every now and then, I thank God that I have my incredible Warrior-Mama friends to help guide me, focus me, lift me up and keep me positive and open-minded. I had a delightful night out with my fellow Warrior Mom (and Dad) friends: Amy, Arch, Erika, Gary, Jennifer, Jen, Julie, Laura, Laurel, Nagla, Nance, Sunny, Teri, Vicki and many others.

I also thank God for Jenny’s down-to-earth, unabashed passion and dedication to this worthy cause; she is a Rock Star Warrior Mom!

I am truly blessed by connections.

Posted by Leigh, filed under Advocacy, Asperger's Syndrome, Dallas Moms Blog. Date: May 23, 2011, 7:47 am | 1 Comment »

[Note: This post was originally shared on the former Dallas Moms Blog; since the post went up, Now I See the Moon has been read far and wide and is currently listed as Amazon’s #3 Book for Special Needs Parenting! If you have not already read it…I strongly encourage you to do so!]

 

Aug 2010 – During the Autism Society National Conference, Elaine Hall, author of Now I See the Moon: A Mother, a Son, a Miracle (HarperStudio, 2010), and founder of The Miracle Project, took time out of her schedule to meet with me. It was a true pleasure to interview this petite, vibrant woman who exudes kindness and contentment.

 A former film and television coach for children, Elaine worked with the likes of Dylan and Cole Sprouse from the Suite Life of Zack and Cody, long before they became “Zach and Cody.” (My son, Ethan, is a big fan of these handsome, talented boys!) Elaine’s work as a “baby wrangler” helped prepare her for motherhood, but when she could not biologically carry children, Elaine turned toward her Russian heritage to adopt a boy from a Russian orphanage. In Now I See the Moon, Elaine details this difficult, yet moving journey to find Neal, bring him home and raise him. When they arrived back in the States, Neal was just shy of 2-years-old and not well; it took a good 6-to-8 months just to nurse him back to health. Not long after that, Neal’s Autism diagnosis took center stage. Elaine shares in the book, “Now comes the reckoning. I am not ready for it. I do not accept that anything is really wrong with Neal. I see his soul. Neal’s soul is whole. Why would anyone imply that he is broken and needs fixing?” In reading Elaine’s words, I felt her pain…I relived my own.

Once Elaine came to terms with Neal’s diagnosis, she began a quest to find ways to reach him and bring him into her world. It was not until she entered his world that they truly connected as mother and son. When I met with Elaine, she shared a story with me which is also in her book; a story about pulling Neal through parking lots, even though he would resist time-after-time; so much so she sometimes felt she was dragging him to the car. One day, she slowed down and allowed Neal to guide her to stop and examine his particular fascination with the cars in the parking lots. Elaine recalls, “Now, following his lead, I stop with him, kneel down, and stare at the hubcaps. What I see is the most beautiful thing: the sun falling on a hubcap creates a starburst of brilliant, shining shards of light. They are magical, mesmeric.” As Elaine retold this story to me at the Hyatt Regency Dallas, I teared up and apologetically wiped at my eyes and nodded in understanding. But, Elaine didn’t mind my tears…we connected then and there. The truth is, when I force myself to slow down, my sweet son – Ethan, like Neal, is able to astonish and astound me with profound understanding and appreciation for the beauty in the world surrounding us. Like Elaine, I feel truly blessed to be a mother of such a special child!

As Now I See the Moon progresses, Elaine shares about the challenges that Autism brings to her family; she is candid about her marriage and frank about what happened to friendships when her sole focus became helping Neal and tending to his therapies and needs. Elaine shares about working with Dr. Stanley Greenspan to learn to better enter Neal’s world. With deep sadness in her eyes, Elaine asked if I was familiar with Dr. Greenspan’s work; his passing was felt across the ASD community this past spring…I could literally “feel” Elaine’s pain when she shared about how powerful his impact was on their lives. In the book, Elaine details working with Dr. Greenspan to create a home program for Neal with coaches (often theater friends Elaine trained) enabling Neal to make slow – but sure – connections. With many other therapies peppered in over the past 14 years, Neal – now 16-years-old – is doing incredibly well. He has become a phenomenal hiker and communicates well by typing and signing.

Elaine’s love for singing, dancing and the theater, paired with her passion to help children with Autism, turned into The Miracle Project; aptly named if you ask me. Elaine credits prayer and a friend’s help to obtain a special needs grant which came through at the ideal time. For the initial Miracle Project, Elaine spent hours and hours to train volunteers to follow the lead of students with Autism for 11 weeks, combining sensory and emotional needs with theater training. Working together, Elaine and the volunteers focused on the students’ interests and gifts to create a unique and beautiful theater production. When the second Miracle Project was set to start, HBO asked to make a documentary about it…and so a miracle (another miracle) was born! I feel I should share that initially, before I had the opportunity to speak with Elaine and read more about the Miracle Project, I mistakenly heard the title of the documentary and had visions of a very awkward, difficult-to-watch High School Musical. I couldn’t have been more wrong!

The documentary, “Autism: The Musical” wowed audiences and won 2 Primetime Emmy awards in 2007-2008. And, best yet, the Miracle Project continues today in California under Elaine’s thoughtful guidance. It is a beautiful connection between children and adolescents living with ASD and caring, giving volunteers interested in entering these kids’ worlds and helping them find joy in song, dance and theater. In fact, dedicated people are now implementing the program in New York and Elaine looks forward to seeing it reproduced (under her guidance) in cities like Dallas, too. I would love for Ethan to be able to partake in something so powerful!

Additionally, “Fly,” a new CD, is available in association with the Miracle Project. The title-song “Fly” was written by a non-verbal teen living with ASD and, on the disk, different celebrities paired up with children living with ASD to record songs. Elaine’s hope is that typical kids will see that all of these kids living with ASD got to record songs with some great A-List names (think Jack Black and Kyra Sedgwick, among others). “Autism is cool,” is Elaine’s message!

I encourage you to visit each of the links within the post to learn more about Elaine:  The Miracle Project, Fly, Elaine’s blog and Now I See the Moon. I fully enjoyed Elaine’s book and highly recommend it. Further, I encourage you to watch the interview Elaine gave on Good Morning Texas while in the DFW area in July 2010. Her genuinely loving and happy attitude is contagious, isn’t it?

Posted by Leigh, filed under Advocacy, Asperger's Syndrome, Dallas Moms Blog, Family, Therapy and Treatment of ASD. Date: April 22, 2011, 8:04 am | No Comments »

*Note: This post was initially posted on the now discontinued Dallas Moms Blog on October 20, 2010.*

If you’re anything like me, your worries for your children don’t stop at today or tomorrow or even next week or month, they extend well into the future. Whether you’re raising a child with or without a disability, you’re probably actively making important plans for the future. Those of us raising children with special needs are often quite uncertain as to what the future will hold for our precious kiddos. Much of my concern about Ethan’s future (now 7-years-old) relates to how we might better help Ethan find success in higher education and later in establishing and maintaining a rewarding career. I know that many parents raising children like Ethan, with Asperger’s Syndrome or High Functioning Autism, share these concerns. We all see tremendous potential in our kids and simply want them to succeed and find joy in what they choose to do in life!

For that reason, I was thrilled to hear about the cutting-edge nonPareil Institute.non Pareil (nP) is taking a novel approach to working with adults on the spectrum in an on-the-job training program for technology- and gaming-related careers. The name “nonPareil” means “unparalleled.” nP is the first Institute of its kind.

Many times young adults on the spectrum have an innate knack for technology, but too often are not encouraged to build on this interest as they transition from high school into college or into the work force. nP takes this acute interest and natural skill with  computers/technology/gaming and offers a different instructional and work environment which promotes acceptance, builds self-esteem and supports dignity.

According to Gary Moore, President and co-founder of nP, since much of the neurotypical world is not extremely accepting and accommodating of adults with Autism, there is a high rate of depression and suicide. Many young adults with ASD, even though they are bright, capable and eager, are unable to score and hold down “mainstream” jobs (like filling salt and pepper shakers in restaurants).

I can see why mainstream jobs could prove challenging in at least two ways. First, some of our young adults on the spectrum are simply not equipped to handle the intricate social system of some work environments nor are the work environments accommodating of these individuals’ diverse needs. Secondly, jobs (like salt/pepper shaker filling or bagging groceries at the supermarket) are far from stimulating or rewarding to these individuals. We all desire to work in jobs that fulfill us, right? Why would we expect anything different from individuals on the spectrum? Simply put, we shouldn’t.

That is why nonPareil’s approach to “education” is so refreshing. The students, ranging in age from 18 to 50+, work together in small group sessions led by nP’s other co-founder and CEO, Dan Selec, to build fundamental technical skills and knowledge. Everyone at nP values the students’ differences and the instructors focus on building upon the each individual’s strengths and abilities – as opposed to accentuating their disabilities.

Dan dreamed up nP in 2007. He started the Institute in 2008 to expose students to different technologies and tools in order to help them find their niche. Dan shares that nP implements a “mission of love and technology” that “meets students where they are and teaches them right there.” Both Dan and Gary are parents of children diagnosed with ASD. Their love and respect for this population is palpable; what they are doing for this group of adults is noteworthy, courageous and inspiring.

Once students have a foundation of knowledge and skill, they are encouraged to work independently on projects.  Many students are currently working on designing iPhone and iPad apps and creating game maps (aka – new levels) for existing computer and video games. One nP student is close to making her first iPhone app sell…she is responsible for the entire project, including design, programming and art!

 At nP, Dan and the other instructors work to gently guide students but ultimately allow them to decide what they wish to work on. When they’re creating a product, Dan helps them see how society might view it. Ultimately though, the power is in the students’ hands as they are encouraged to “bring their vision of what they want into the world,” says Dan. This I love! When I look at our society’s major advancements from the past to the present, it is often the forward-thinkers and out-of-the-box brilliant minds who have been instrumental in designing necessary change and advancements. nP is educating, nurturing and mentoring some of society’s out-of-the-box brilliant minds, right here in the DFW area!

nP has recently been recognized as a revolutionary new model for a self-sustaining non-profit organization. The games and apps sold by nP students while attending the institute will eventually go toward sustaining the program. Students pay a monthly tuition to attend nP classes and lab time held on the SMU Plano campus. In the current location, nP has about 20 students presently enrolled, but can accommodate up to 50 students.

With a large expansion planned for 2011, nP will be able to expand beyond 50 students and will be able to offer students more daily hours on the equipment. But, in order to make that happen, more funding is simply a must. Click to read more about the expansion plans or to learn how to make a much-needed donation.              

At nP, smart students – many of them afraid of failing at yet another typical school or work setting – are allowed to succeed. More importantly, they cannot fail! It is students’ individual strengths that guide the direction of their program. When they leave nP, they will be armed with: work-force experience in a career which encourages creative self-expression; a community of co-workers with similar interests/goals; and a taste of sweet success. You have to admit – that’s powerful!

Posted by Leigh, filed under Advocacy, Asperger's Syndrome, Dallas Moms Blog, Education, Family, Uncategorized. Date: March 2, 2011, 10:59 pm | No Comments »