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 »

[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 »

*Note: This post originally ran on the now discontinued Dallas Moms Blog…the information is still vitally important for parents, so I wanted to share it here! *

 

According to the Encarta Dictionary, a toxin is: a substance that accumulates in the body and causes it harm. I would venture to say that most people know that we encounter “toxins” on a daily basis. What you may not know is how frequently we encounter certain toxins and what effects they can have on your children.

Not long after our son, Ethan, was diagnosed with Asperger’s Syndrome in 2006, an Autism Spectrum Disorder (ASD,) I started searching for tangible ways I could help him. As I delved into the research, I learned about biomedical treatments. Thanks to Jenny McCarthy and lots of very dedicated and brilliant medical doctors with Autistic children themselves, biomedical treatments have become more popular and better understood in the past few years.

Prior to Ethan’s formal diagnosis I toyed with diet changes and found that he is sensitive to gluten (the protein found in wheat, rye and barley.) For many kids, gluten and/or casein (the protein found in milk and dairy products) act as poisons in the bodies of susceptible children. Today Ethan eats a completely gluten-free diet (along with a number of other necessary restrictions.)

With the help of Dr. Seshagiri Rao, a wonderful local DAN! doctor (Defeat Autism Now!) we ran lab tests a couple years ago to determine how Ethan’s various systems were working. Astonishingly, we discovered that he had a terrible yeast-overgrowth in his intestines, was extremely deficient in some Neurotransmitters with an over-abundance of others, and was showing very high heavy-metal readings of Mercury, Lead and Arsenic.

We also found that his zinc-to-copper ratio was extremely out of whack and uncovered a number of other deficiencies which needed to be treated. Over the past two years, we have also unearthed a bacterial overgrowth, an Amino Acid deficiency and discovered that Ethan’s body does not produce enough Glutathione, a key antioxidant. Even though he appeared to be a “healthy” child, Ethan was ill on so many levels, and the illness was manifesting itself through his behaviors! Here we were a typical middle-class American family with a healthy diet and access to standard American medical care via a PPO. How could our sweet boy be so very sick?

I began to compulsively research how this could be. Further, I explored all available options for helping Ethan’s little system heal. Much of what I have learned along the way is knock-your-socks-off-scary. I’ve come to the disturbing conclusion that we now live in an extremely toxic world. I think every parent needs to be aware of certain toxins which may be damaging an entire generation of children. Families, especially those with susceptible children (think ASDs, Asthma, Allergies, ADHD, etc.) need to consider putting safeguards into place. Sadly, these kids’ systems are inefficient and often unable to process out the nasty toxins.

Here are 12 “everyday” toxins I believe you NEED to know about to protect your loved ones:

Lead: Though it was banned from paint and phased out of automobile fuel in the 70’s, lead is still a concern for modern families. Airplane fuel consumption, metal melting, auto body finishing, cement manufacture and incineration all routinely release lead into our atmosphere. (Note: we lived just south of the DFW airport while I was pregnant with Ethan and until he was about 3 ½ years old.) Also, we must not discount the numerous reports of imported toys testing ridiculously high in lead levels in recent years.

Arsenic: Added to chicken feed to kill parasites and promote growth, Arsenic accumulates in the chickens (which we eat) and is passed into their excrement (which is later used as fertilizers on other farms) so it is then passed back into the aquifers. Conversely, not only are we getting it in our chicken meat, we are also drinking it in our water and ingesting it via contaminated crops (like rice) grown/farmed in our contaminated water supply. That’ll make you think a little longer about your next “Chicken and Rice” dinner! Knowing all of this, I now “invest” in organic, free-range chicken meat.

Mercury: a.k.a. Hg, Mercury is considered the most toxic, non-radioactive element on the planet and is a verified neurotoxin. Yet, our country alone releases an estimated 200 metric tons of mercury into the environment each year. Once released into the atmosphere, it returns to earth as rain and pollutes every body of water. For me, Mercury raises concerns on several levels: 1) Fish consumption, 2) Dental Amalgam Fillings, 3) Flu Vaccines. While a “safe” level of mercury has never been truly identified, the US EPA recommends no more than 0.1 mcg/Kg of body weight per day.
• Most fish have 0.2-0.3 mcg of Mercury per gram of meat. You do the math–one 6oz serving of fish could easily calculate to total several days’ worth of “recommended 0.1 mcg/Kg” mercury in one sitting, for an adult; the assault to the system of a child would be even greater.
• Secondly, Dental Amalgams (which I had while pregnant with Ethan,) release mercury each day as a result of chewing. (Yes, that’s right…chewing!) Say a person has 8 amalgam fillings, an estimated release of about 104 mcg of mercury vapor each day would flood their system, which is well over the “recommended” EPA daily exposure.
• Finally, many people don’t realize that mercury is still used as a preservative in most flu vaccinations. Recommended by the CDC for pregnant women, babies, toddlers and young children, yet these flu vaccines contain a known neurotoxin. Please consider that the mercury in flu vaccines, along with other nasty additives, is injected directly into one’s bloodstream essentially leaving the body no way to “filter” the mercury out before it does irreversible damage to very delicate systems. Ethan had a nasty regression at the age of 4 from a flu vaccine. Solution? If you must get a flu shot while pregnant or give one to your young child–demand–and I do mean demand, a Thimerisol-free vaccine. (Thimerisol is 49% mercury and is used in many flu shots to this day, including the H1N1 vaccines which have received so much attention in the past year.)

Just a couple more surprising sources of Hg to consider: light-up shoes and shirts, plus there are even small amounts of Mercury in most high-fructose corn syrups. Ethan had to part with some really cool Sketchers this month because we just can’t chance exposing his body to more Mercury if one of the light mechanisms gets broken.

Phthalates: Used to soften plastic and make it more flexible, Phthalates are found in such things as soft plastic water bottles, soft vinyl toys, shampoos, hair sprays, perfumes, deodorants and various pharmaceuticals. Phthalates are known hormone disrupters which cause sperm and genital problems in males. Next time you buy a water bottle on-the-go, consider that it has released phthalates into your water, especially if it has experienced any heat on the way to your hands. Invest in reusable stainless steel water bottles and glass storage containers for your left-over food to protect your family and help the environment, too.

Flame Retardants: a.k.a. PBDEs (polybrominated diphenyl ethers) are known to disrupt thyroid function, cross the placental barrier and pass through into breast milk. Flame retardants are commonly found in children’s pajamas, in furniture foam, in carpet padding and are even found in cell phones, computers and TV monitors. Our children are often sleeping on mattresses with PBDEs and wearing PJs with PBDEs…so they’re breathing the fumes for 9+ hours every night! Then, they spend many waking hours in classrooms and/or homes with computers, TVs and cell phones. Additionally, PBDEs are being found in our water supply and getting passed along to farm-raised fish. We now only buy organic cotton PJ’s for Ethan and when it is time to replace bedding we’ll purchase an all-natural organic cotton mattress. Though these options are much more expensive than their PBDE counterparts, we think they’re worth it.

Sleepwear by Hannah Andersson

No flame retardants in these jammies!

Bisphenol A: a.k.a. BPA, found in hard plastics including many baby bottles, the lining of tin cans, food containers and many dental sealants. BPA is associated with breast and testicle cancer, diabetes, hyperactivity, obesity and low sperm. Be aware–since babies’ livers are so new, it is estimated that 3-6 month old babies are likely to accumulate 5x more BPA than adults, from comparable exposure. The Obama administration has recently gone public with questions regarding the safety of using BPA. Additionally, some companies have shown concern in recent years and now create BPA-free products, like BornFree Baby Bottles. Sure wish I’d known when Ethan was a baby how very damaging BPA can be.

Teflon: a.k.a. PFOA (perfluorooctanoic acid,) is used to prevent food from sticking to cooking surfaces. This chemical is actually classified by the EPA as a “likely carcinogen.” How many of you are preparing your meals with an invisible side of a “likely carcinogen?” We recently got rid of all of our non-stick cookware. Non-PFOA cooking options to consider for your kitchen: stainless steel, cast iron, ceramic titanium, and porcelain enameled iron.

Polyvinyl Chloride: a.k.a. PVC, often used in flooring in American houses. A study in NeuroToxicology in Feb. ’09, found a direct relationship between PVC flooring in a mother’s bedroom during pregnancy and the future development of an ASD. A simple word to the wise: consider alternative flooring in your master bedroom and the kids’ rooms, if possible. Hardwood and tile floors are increasingly more popular with families concerned about toxins in the home.

Styrofoam: A polymer of styrene, Styrofoam is made from benzene, which is a known carcinogen. Styrene mimics estrogen and disrupts hormone function. Absorption of styrene is increased by higher fat content of food, by alcohol, by lemon juice and by the heat of the contents. (Think about your morning Latte. Did it come in a Styrofoam cup, at a high heat, with cream in it?) Not to say that you should never again treat yourself to a steaming hot cup of coffee or tea, but it would be wise to carefully monitor your exposure. Also, ground meat is usually placed on a Styrofoam tray and wrapped with Phthalate-ridden plastic. Tote reusable coffee cups with you and ask your butcher to wrap your meat in butcher paper.

Pesticides: Dursban (chlorpyifos) is one of the most widely used insecticides and is one of many nerve gas derivatives commonly in use in our society today. While the EPA declared that it “posed unacceptable health risks” in 2000, it was never banned. Some companies have withdrawn it from residential sales but it is still widely used in schools, daycare centers, hospitals and crop fields. As such, food is now identified as a major source of exposure to pesticides in young children. This is why we buy locally grown organic foods whenever possible. “Organic” simply means that the food was not processed with synthetic pesticides or fertilizers, sewage sludge, genetic engineering or irradiation. Non-organic foods are processed with thousands of chemicals, many of which have never been adequately tested for toxic effects, especially in varying combinations with one another. We have a local company come in quarterly to help us handle our “pests” in an all-natural fashion so I don’t have to fret about allowing Ethan to play in our backyard.

PERC: a.k.a. Perchloroethylene or Tetrachloroethylene, is used in the dry cleaning industry. Over exposure to PERC can cause impaired memory, confusion, drowsiness, vertigo, irritability, loss of appetite, nausea and vomiting; continued exposure can cause tremors, numbness, coma and death due to respiratory paralysis. If you must dry clean your clothing, look for companies using CO2 based or silicone based techniques instead of PERC. When you do bring your dry-cleaned garments home, remember to leave them covered (in your car). Then hang them outside, take the plastic off and allow them to air out for a couple of hours before bringing them inside.

VOCs: a.k.a. Volatile Organic Compounds. VOCs are often used in paints and solvents. By definition, “volatile” simply indicates that these chemicals readily evaporate into the air. In this way they pollute our environment and when trapped within the confines of a house or building, can irritate and harm the people who breathe in the fumes. Non-VOC paints are more natural, often created from other organic compounds. As such, they not only smell better but they are far less likely to worsen pre-existing conditions like allergies or chronic respiratory problems. Our last home project required several coats of paint and we went with a Non-VOC option and have been quite pleased.

While this is by no means a comprehensive list of toxins American families are raising concerns about, and I am far from being a medical doctor or an environmental expert, I felt this information was too useful and important not to share. Much of the information shared above I learned at a DAN! Conference hosted by the Autism Research Institute in Dallas in October ’09.

Dr. Stuart H. Freedenfeld, Medical Director of the Stockton Family Practice and Autism Treatment Center in Stockton, New Jersey, gave a very informative talk called “Defending Your Child from a Toxic World” to a room full of stunned parents, doctors and caregivers. Though I very nearly left Dr. Freedenfeld’s presentation that night feeling completely overwhelmed and panicked due to this over abundance of truly nightmarish information, I took something Dr. Feedenfeld said to heart and would suggest you to do the same.

To paraphrase, the doctor encouraged everyone to take things slowly and make changes at a pace with which you’re comfortable. Don’t beat yourself up for things you’ve done in the past which “may have” contributed to a health problem. If you think there might be a problem now, err on the side of caution and make the changes you can to create a safe, healthy environment for your family. Thank you, Dr. Freedenfeld, for teaching me how to “defend” my family and encouraging those of us in your presentation to pass the knowledge along.

If you know of other toxins that you feel are a true concern to American families, please leave a comment below because this is by no means an all-inclusive list. Let’s use this as a tool to inform one another. I hope you can use my notes to “clean up” your family’s environment as much as you see fit and I look forward to learning from you. For us, “project clean up” is a true work in progress and happens in gradual steps. While we still haven’t altered everything I’d like, I’m proud of the changes we have made and feel confident that each change has helped my son become healthier and stronger.

Posted by Leigh, filed under Asperger's Syndrome, Dallas Moms Blog, Environment, Family, Toxins. Date: February 22, 2011, 9:32 am | 2 Comments »

Luigi & Mario

Last year at this time, I had just started writing for the Dallas Moms Blog and was excited by some social progress Ethan was making with his peers at school (thanks to two very busy Italian plumbers). As I refect on Ethan’s progress (and work on a new post about Ethan’s progress regarding social awareness this year for AutismSpot.com to be posted tomorrow) I wanted to re-share this post from February 10th last year!

 

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

With Valentine’s Day this Sunday, relationship-talk is abundant. Everyone seems to have something important to share about creating lasting relationships–and I’m all ears. Since my son (Ethan, 7 years old) lives with Asperger’s Syndrome (AS), an Autism Spectrum Disorder, he often has difficulty with forming and maintaining friendships.  The truth is most kids and adults with AS have deficits related to social skills and communication. In our house, we are almost continuously immersed in friendship discussions in one form or another to help Ethan acquire skills which develop organically in the majority of his peers.

       Don’t get me wrong, my guy is one heck of a talker, he’s highly verbal and loves a good chat. His “communication deficits” have more to do with understanding non-spoken elements of communication like body language, facial expressions and utilizing fundamental pragmatics of language.

   He tends to have difficulty realizing when friends are tired of hearing him talk about certain topics or when a friend wants him to stop doing something bothersome or irritating. We work to understand and embrace these difficulties in our house and try to find inventive ways to role play or use daily situations as conversational springboards to help Ethan learn more about successfully communicating with those around him.
 
   Thankfully, Ethan also attends a phenomenal Social Thinking Group (based on the Social Thinking Curriculum developed by Michelle Garcia Winner) with other kids and several very dedicated therapists at Help, Hope, Solutions in Plano. In this way, Ethan is constantly learning new social thinking skills at home, in therapy and at school. It is the school part that is hard on all of us, simply because my husband and I can’t control anything that happens or help Ethan problem solve on the playground, in the lunch room or during any of the other social times built into the school day.

    Imagine my delight when I recently discovered that by giving Ethan his own hand-held Nintendo DS game player for Christmas, we have actually facilitated conversations with “neurotypical” peers at school (appropriate conversations at that!) Over the past month, since Ethan received the Super Mario Bros. game as a gift from his Aunt and Uncle, he has been forming bonds with friends at school and creating opportunities to interact with new kids at lunch and during recess.

   He has shared with us that two classmates share his love for the 25+ year-old-video game. I personally witnessed him utilizing the characters, the game levels and winning strategies with one of the boys when I dropped in at lunchtime while I was volunteering for the school’s Scholastic Book Fair. Who would have ever guessed that I would love two miniature, super-human, Italian-American plumbers so much? This Valentine’s Day, I unashamedly admit–I ♥ Mario and Luigi!
    
    Do you have any unexpected loves you would like to share this week leading up to Valentine’s Day? Have you ever stumbled across something unexpected but ever-so-appreciated nonetheless? I’d love to hear about your startling discoveries and surprising loves.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Update: As of 2011, Ethan still loves playing Super Mario Bros. and has actually begun playing on a Nintendo Wii purchased with his birthday money last fall. For a post about our decision To Wii or Not To Wii, please click through to see my post for AutismSpot written last November!

Posted by Leigh, filed under Asperger's Syndrome, Dallas Moms Blog, Family. Date: February 13, 2011, 10:54 am | 1 Comment »

02  May
Sure, Sugar!

            Last month, I was awarded The Fabulous Sugar Doll Blogger Award by friend, writer, literacy enthusiast and fellow blogger, Hema Penmetsa. (I was right in the middle of too many projects at the time, so Hema graciously suggested I “sit on it” for a few weeks and then “claim” it whenever I could! Check out Hema’s fantastic blog, Wading Through Words.

The Fabulous Sugar Doll Blogger Award

             Here to “claim” the award, as a “Sugar Doll,” I am asked to complete two tasks: 1) I must reveal ten things about myself, and 2) I must pass the award along to a fellow blogger. What an honor! And, what a challenge… 

             I am truly, deeply honored that someone appreciates my writing enough to give me an award! The challenge? Selecting 10 things to reveal about myself that others might find interesting. Many of my readers are friends and family, and I’m a rather transparent person, but I’ll certainly do my best to share some interesting tidbits. Then, at the end of my ten, you’ll find out how I fulfill task number two… that’ll be easy!

             Thanks again, Hema!

 

“Ten things” about Leigh Attaway Wilcox:

1.      I have loved to write since I was a very little girl; when my family moved back to NM from CO when I was in the first grade, I followed my mom and aunt around the house begging (well, probably more accurately nagging) for a pencil and paper…while they were unpacking box after box in various rooms in the house (searching for nothing other than pencils, no doubt), my aunt asked my mom where she should empty a particular box. As she rattled off the contents, my small ears heard only, “…pencils…” They laugh when they talk about my excited voice inquiring from another room, “Pencils?!?!”

2.      Growing up I was a total tomboy! My bother (Jake) and my cousins (Nate & Ryan, whom we lovingly refer to as “Cousin-brothers”) can attest to this fact. I loved to run, romp, dig, bike and play with the guys just as much as I liked playing with my girl friends and cousins…and for the record; I NEVER liked playing with Barbie dolls!

3.      I had a rockin’ sticker collection at the end of grade school. Looking back, it was a rather silly collection because I never really “used” the stickers for anything much fun…I just loved having “rad” stickers in a sparkly binder to drool over every now and then.

4.      As a child and adolescent, I loved playing soccer; when I was in high school though, there was not a girls’ team. So, I went out for the guys’ team and was the first girl in the history of Farmington High School to make it. Fun times! I’ll never forget playing out-of-town teams for the first time…many opponents would take it easy on me until they found out that I would “burn” them just as fast as would any of my teammates. But, you can bet they were a little miffed when it happened…after all, I was a girl!

5.      My first car was a hulkingly huge brown Ford Bronco and I got my driver’s license on my 15th birthday. My BFF, Dana, and I lovingly called her “Brown Bertha.” Along the lines of being a licensed driver, I’ve had more driving years than non-driving years in my life! Ugh.

6.      I live with an Auto-Immune illness called Ankylosing Spondylitis, which is a cousin of Rheumatoid Arthritis. Many of my joints are affected and I self-inject medication. I was diagnosed about 7 years ago but was likely suffering from it in my late teens when I started having back pain that never quite went away. I am also gluten-intolerant; Celiac Disease (another auto-immune disease) runs in my family. But, as a result, I can bake a mean Gluten-Free chocolate cake!

7.      While I love living in Texas to a certain degree, I secretly dream of moving back to New Mexico to be near my family; it kills me not to see them more than a couple of times a year. But, honestly, I’d settle for southern Colorado so that I could make weekend trips…in addition to missing my family, I also missing having actual seasons (like, four of them instead of the two in Texas…winter and summer.) The mountains and valleys call my name on a regular basis. Texas is rather flat, you know? I miss New Mexico!

8.      In my life I have blessed by true friendship! God has hand-selected a number of wonderful women in each stage of my life to help me along my journey; I am so thankful for these women! (You know who you are, Ladies!)

9.      When I was in college (learning to be an educator), I always thought I’d go on to obtain several graduate degrees and eventually teach at the collegiate level. These days I can’t even fathom going back to school. However, I am constantly learning! Because Ethan, my only child, lives with Asperger’s Syndrome (an Autism Spectrum Disorder), I almost always have a book in my hand, a documentary to watch, a new blog to read or something powerful I feel empowered to write about regarding Autism. Recently when we went to a movie at our local AMC theater, there was an advertisement for the AMC Sensory-Friendly films (now showing across the country in association with the Autism Society). Ethan heard “Autism,” looked at me with the sweetest, most innocent, excited face and said, “Mom—Autism! YOU could help them with that!” Oh how I am blessed!

10.  Before becoming a mother, I didn’t truly understand how deeply profound and fully encompassing love could be. My son is an amazing gift; I have learned more through him than I ever knew was possible! Through motherhood, I have also developed a new-found respect and love for my mother. Family is such an integral part of who I am, who I’ve become and who I want to be.

 

            Now, drum roll please…it is my pleasure to pass The Fabulous Sugar Doll Blogging Award along to fellow mom, and Dallas Moms Blogger – Amy Twomey. Amy’s personal blog “i am a celiac,” incorporates her beautiful photography with all sorts of great information about living Gluten Free. Congratulations, Amy! You are the next Fabulous Sugar Doll Blogger!

 

      Hema and Amy, thanks for inspiring me and motivating me through your blogs on a regular basis.

 

      Readers, thanks for reading, commenting and always managing to provide encouragement when I need it most.

Posted by Leigh, filed under Asperger's Syndrome, Dallas Moms Blog, Family. Date: May 2, 2010, 3:10 pm | 1 Comment »

05  Apr
Neruotherapy

Well, folks. Many of you know that Greg and I are constantly searching for therapies, activities and treatments for Ethan that will help him live a happier, fuller life in spite of living with Asperger’s Syndrome. (I guess I should clarify that I do the constant searching and Greg encourages me and makes it possible to pay for the new therapies and activities!) But I digress…

In March we decided to meet with Dr. Jonathan Walker, a Board Certified Neurologist at the Neurotherapy Center of Dallas who is a pioneer in the field of Neurotherapy. He has been studying, researching, teaching and practicing in this field for over 35 years. Neurotherapy, also referred to as Biofeedback and/or Neurofeedback, utilizes ground-breaking technology to “re-train” certain portions of the brain which are not functioning as fast as they should be, in comparison to typical age peers with no brain injuries, brain damage or other neurological issues. Dr. Walker and his staff use a non-invasive QEEG-guided form of neurotherapy to help the brain learn to self-correct abnormal brain patterns.

In order to see if Ethan would be a good candidate, Dr. Walker took a thorough history and also physically examined Ethan. We had a lengthy dialog about what kinds of things we have done with and for Ethan, what kind of results we’ve seen and what we hope to accomplish via neurotherapy. What have we done, you ask? Lots! Ethan has been in Speech Therapy, Occupational Therapy, Social Thinking Groups, Social Skills Groups, on special diets, takes a compilation of very helpful natural supplements, uses certain prescription medications to help manage yeast- and bacterial-overgrowths and we also have chelated Ethan’s body to purge heavy metals. We’ve also recently started Yoga with a teacher certified to teach individuals with special needs and we’ve also started seeing Dr. Amber Brooks, a DAN! doctor who will be doing Cranio Sacral therapy with Ethan.

What have our results been? Ethan’s speech (pragmatics) and disfluency (stuttering) continue to improve thanks to continuous therapy, through the school system as well as private therapy. Ethan’s Sensory Processing Disorder issues have diminished greatly and become much easier to control over the years thanks to our work alongside private OTs and now Ethan is receiving some help via a school OT, too. Through Social Thinking Groups and Social Skills Groups, Ethan has become more proficient at interacting appropriately with his peers and handling unexpected or difficult situations. Ethan’s gluten-free, yeast-free, sugar-free, almost completely soy-free and low oxalate diet help him to feel good and stay focused. We’ve also discovered recently that casein seems to be affecting Ethan negatively, so we’re in the process of removing all dairy products from his meals. The natural supplement regimen has been wonderful for Ethan! While the kid has to be a trooper and swallow anywhere from 15-25 pills every morning and evening, he knows it helps him function better and feel good. When he has had to go off of all supplements for laboratory tests, he was a different child, more akin to the Tasmanian Devil than the loving, sweet boy Greg and I adore so much. Without the help of prescription anti-fungals and anti-bacterials paired with high-quality probiotics, I don’t know if we would have ever gotten Ethan’s digestive tract in healthy shape! After receiving so many antibiotics for ear infections when he was younger, Ethan has struggled with yeast overgrowth for years. Antiobiotics essentially kill all bacteria–even the good flora our guts need to adequately digest food, mainain balance and help provide immunity to infection and disease. Finally through what is called chelation, we have been able to help Ethan’s system rid his body of some of the toxins his system doesn’t naturally detoxify well, like Mercury, Lead and Arsenic. With all of these therapies working in conjunction together, we know we have done amazing things for Ethan and helped him in ways we will never regret. We already like what we’re seeing in terms of Yoga and eagerly anticipate how the Cranio Sacral therapy will help, too.

However, even with all that spelled out, Ethan still has issues with impulsivity and self-control that concern us. This is why I sought out information on neurotherapy and came to find Dr. Walker and the Neurotherapy Center of Dallas. Dr. Walker has had many patients lose symptoms like Ethan’s with permanent results and only very mild side effects like a headache from focusing too hard the day of therapy. Permanent symptom loss with minor side effects certainly appeals to us. Dr. Walker, after  conducting his initial evalutaion of Ethan and reviewing his extensive history, felt sure that Ethan would be a good candidate for neurotherapy. As such Ethan underwent a few tests/assessments in order to understand how Ethan’s brain is currently functioning and develop a treatment protocol. We meet with Dr. Walker tomorrow to find out more.

Many people have asked me what the tests/assessments were like, so I thought I’d put it here s. First, Ethan underwent a QEEG (Qualatiative Electroencephalogram) in Dr. Walker’s office with one of the staff therapists. A space-age cap (see photo) with 19 strategically-placed electrodes was placed on Ethan’s head. The therapist carefully worked to make sure each electrode made contact with Ethan’s scalp in the accurate places while Ethan watched The Incredibles on DVD. About four additional electrodes were gently placed on Ethan’s forehead and ears. This therapist was especially kind, gentle and understanding of Ethan’s sensory issues and I could tell he is very good at what he does. Several readings are required to create a “brain map” of Ethan’s current brain patterns. Readings were taken 1) while Ethan watched the movie, 2) looked intently at a spot for several minutes, 3) closed eyes and rested for several minutes and also 4) read aloud to the therapist. I’m told that about 70 pages of readings will result from Ethan’s hour hooked up to the cap.

Ethan wearing the space-age QEEG cap in Dr. Walker's office

Ethan wearing the space-age QEEG cap in Dr. Walker's office prior to electrode attachment; Greg watching on.

Ethan also underwent a few other evaluations in Dr. Walker’s office so that the protocol prescribed for Ethan will be a good reflection of what his brain needs to function at its best. The IVA (Integrated Visual and Auditory) CPT (Continuous Performance Test) helps to measure ADHD criterion. This was done with Ethan on the computer utilizing the mouse; we did not observe this one so that the clinician could get a clear read. We also completed a DASS (Depression Anxiety Stress Scales) questionaire to allow them to measure possible negative emotional states of depression, anxiety and stress.

One of the things I like most about Dr. Walker is that he is actively working to provide non-pharmaceutical approaches for treating many of the issues that have become commonplace for Ethan’s generation. While there are prescription options available to help with impulsivity and self-control, I hesitate to use them until I have exhausted all other avenues. Dr. Walker is one of the doctors who believes that gluten and casein negatively impact many kids on the Spectrum, as do some vaccines. He outright stated that based on Ethan’s history and his physical evaluation, Ethan was likely suffering “brain damage” from vaccinations. If you’ve spoken with me at length, you know that I, too, believe that vaccinations have a played a role in Ethan’s Autism, but I don’t fell they are completely to “blame.” Dr. Walker seems to encourage families to work with a DAN! doctor and when dietary changes and chelation don’t sufficiently resolve problems, he claims it is likely because “there is usually residual brain damage that is not remediated with such treatments.” In comes Neurotherapy…

So, while we don’t yet have a Neurotherapy protocol yet, I am encouraged by our visit with Dr. Walker and his staff! Keep us in your thoughts and prayers as we embark on this new leg of our journey with Autism. If you’re interested – please let me know. I’d be glad to post more about Ethan’s recommended protocol and what we see when he begins.

Posted by Leigh, filed under Asperger's Syndrome, Family, Gluten-Free and GFCF Foods. Date: April 5, 2010, 11:59 am | 2 Comments »

While I haven’t made the progress I would’ve liked regarding utilizing new, healthy GFCF recipes, I have tried a few new things and wanted to share that I have modified my mom’s (and Grammy’s) Buttermilk Cornbread recipe with great success!

Gluten-free Casein-free (Mock Buttermilk) Cornbread

2 cups GF Cornmeal

2 cups Hempmilk w/ 1-2 tbs GF vinegar

1/2 cup ground Salba seeds

2 eggs

1 tsp Salt

1 tsp Soda

(Note: Feel free to experiment with more or less Salba. Salba is a wonderful source of fiber and Omega-3s!)

Mix all ingredients together with a whisk. If mixture is dry, add additional Hempmilk until thick but very moist. Oil pan and bake 20-25 minutes. 425 degrees if in Pyrex, 450 degrees if in metal pan.

Greg and Ethan both raved about the results both times I’ve baked it this way. Greg complimented, “This is restaurant quality!”

Enjoy!

Posted by Leigh, filed under Family, Gluten-Free and GFCF Foods. Date: March 30, 2010, 12:54 pm | 1 Comment »

Many of you know that Ethan and I eat a strictly Gluten-Free diet. We were thrilled to hear about the expansion of the P. F. Chang’s China Bistro Gluten-Free Menu last week so we headed on out to give some of the new dishes a try. Please click on over to the Dallas Moms Blog to read about our experience.

Ethan with the grand horse at P. F. Chang's China Bistro

Ethan with the grand horse at P. F. Chang's China Bistro

Posted by Leigh, filed under Dallas Moms Blog, Family. Date: March 17, 2010, 11:06 am | No Comments »

12  Feb
Snow! In Texas?

          Well, inevitably we get one or two good snow storms here in North Texas every year or so. Yesterday’s snowfall was record breaking, though. Something like 9 inches in one day!

Our quiet street in North Texas!

Our quiet street in North Texas!

          In our school district, kids attended regular classes yesterday because though the flakes were falling and temperatures were chilly, the snow was not causing hazardous road conditions. When Ethan got home from school he and Greg started creating some snow art for the front yard.

Ethan and Greg with a lovely mid-section for our snowman!

Ethan and Greg with a lovely mid-section for our snowman!

          Following a snowy drive home from a speaking engagement in Carrollton, I came home to help with final touches. What do you think of our snowcowboy?

Leigh & Ethan with the final Snowcowboy product

Leigh & Ethan with the final Snowcowboy product

          After dark yesterday the snow kept falling and temperatures dropped making road conditions dangerous, so the kids have a Snow Day today! Needless to say we are taking it easy, had a late breakfast, hanging out in our PJs and making plans to go play in more of the flaky white stuff soon.

View of our house and snowcowboy from the street, Friday 2-12-09

View of our house and snowcowboy from the street, Friday 2-12-09

Posted by Leigh, filed under Family. Date: February 12, 2010, 11:49 am | 1 Comment »

« Previous Entries