Hope is a Big Word…
It surprises me how much the single word HOPE can make all the difference when living with a child with autism.
Follow that word with EDUCATION and EMPOWERMENT and nothing but good things can happen.
These powerful words, HOPE, EDUCATION and EMPOWERMENT are exemplified in a short but powerful note I received from a family this past week:
“I hope you have the chance to read this amongst all your fan mail. Living with a child with Autism definitely has its ups and downs. Another side to that is in dealing with mainstream doctors. After a particularly heartbreaking appointment at my local resource/autism expert, I left feeling defeated.
The drive home brought on more tears and a sense of being overwhelmed. Me against the system and left with no hope. It was a few minutes into my pity party that I thought about TACA and my mood lifted. I went from feeling like a victim to feeling a complete sense of empowerment. I knew that once the effects of the day wore off, I would talk to my TACA friends and find solutions to the mountain in front of me. I can’t believe you had the wisdom and the courage to establish TACA for us. I know my life would be different without knowing TACA. I feel like I have the tools to either chip away at those mountains or learn how to scale them. I think of you, Lisa, fondly and often, particularly at those dark times. Thank you. You have made a difference in my life, and that makes a difference in my son’s life.”
It is a wonderful thing to receive such a kind note and to know hope followed by empowerment and education can drive steps forward. I know autism is treatable. I know this journey is a hard one for families living with autism. TACA will be here to help families navigate those important steps, climb over those huge obstacles and drive positive change and good health for their children.
- 25% of children diagnosed with classic autism under the old criteria would not qualify for autism
- 55% of those with higher functioning autism would not qualify
- 75% of those with a diagnosis of Asperger’s would not qualify as being on the autism spectrum
- 85% of those with PDD-NOS would not qualify
Who’s in Charge Here?
On a Saturday in April 2001 almost 60 parents gathered in the living room, dining room, kitchen, and backyard at a home. They were all looking for answers to help their children with autism. To date, this was our 6th parent meeting in that home.
I held my breath. I looked around. People were finding help. A mom cried and hugged a newly found friend because she just found a glimmer of hope following a dark prognosis. Dads were in the backyard hanging out, watching the kids, and finding new friends themselves. A new mom walked in holding the meeting announcement in her hand and I overheard her asking my daughter “Who’s in charge here?”
My daughter looked at me and smiled. It shocked me to hear the words “I am” come from my mouth.
In November 2011, TACA entered our 12th year in empowering and supporting families living with autism. In 2011, almost 300 meetings across the United States occurred to help families find answers and real hope for their kids. Today, TACA is approaching that 28,000 family mark. We need a bigger living room!
If you asked me 14 years ago, “What will you be doing in 2012?” I would have told you my career, family, and God willing, having another baby. Never in my mind did I think I would be leading a non-profit organization assisting families affected by autism. Looking back at the memories of this anniversary and reflecting where TACA needs to grow, I cannot imagine doing anything else.
Holding on to Hope…By Guest Blogger Linda Betzold
Correction: It has come to our attention that the wrong blog article was posted on 2/1/12. Our apologies to Linda for the mix up.
Holding on to Hope…
By Linda Betzold
I like hope. It is my nature to hope. In the face of almost anything, I am looking for hope. In my fourteen-year autism journey, hope has become my constant companion. It gets me out of bed in the morning. It sustains me. So what is hope? How do we get it? How do we hang on to it?
I think hope is simply the belief that tomorrow can be better than today. I find that hope is born when we can see a path, a series of actions that can potentially lead us to that better tomorrow. Once we understand that the actions we take can change the lives of our children, there is no suppressing hope. There is no room for delusion in hope. We aren’t wishing on a star or simply crossing our fingers. With eyes wide open, we follow the research and educate ourselves, which is what reveals to us that path leading to a better tomorrow. With a vision and a plan, hope is born. We choose therapies and strategies that have proven themselves. We choose clinicians with experience and good reputation. We choose physicians who understand autism for the medical condition that it is. We have our children evaluated medically and treat what we find. As a result, our kids get better; some even recover. Once we see our children feeling and functioning better, hope breeds more hope. It becomes impossible to stop hoping.
Within TACA we often say that the autism journey is a marathon, not a sprint. As most of us know, it takes time to heal the body of this complicated, multi-system, metabolic mess we call autism. Hope fuels us and is essential to completing this marathon. But what happens when it becomes hard to hope? My son is the kid that the doctors in our community call the “tough nut.” He’s sixteen years old now, and we’ve broken the bank multiple times over the years doing everything we could to help him feel and function better. There have been different diets, scores of supplements, injections, EEGs, endoscopic procedures, pill cam studies, MRIs, lumbar punctures, muscle biopsies, helminthic therapy, IVIG treatments, and, of course, countless hours of speech therapy, occupational therapy, and Floortime. My son is still nonverbal and still very self stimulatory. He lives with a great deal of pain, mostly gastrointestinal pain, and in the last few years he has been dealing with frequent migraines. He often can’t sleep because he is just not comfortable in his own body. He is very self injurious when he’s in pain and sometimes aggressive. 2011 brought us three hospitalizations and three visits to the emergency room, all related to his gastrointestinal issues. I find that as a mother, the self-injurious and aggressive episodes are the most painful thing of all to endure. Pain breeds fear, and fear will crush hope. There are tear-filled, sleep-deprived moments when hope all but dies.
So how do we hang on to hope? How do we bridle the fear and give the reigns back to hope? It helps me to take a mental journey back to 1998. My son’s diagnosis was May 1, 1998. I remember that day vividly right down to the clothes I was wearing. But mostly I remember feeling like the earth had stopped turning on its axis, like there was no gravity, and that nothing would ever be the same again. I was filled with fear, not having a clue what this diagnosis would mean in reality for my son or our family. About six months after the diagnosis, the six most anxious months of my life, we became aware of the GFCF diet. The diet helped my son; some of the “fog” lifted for him. We also learned that some parents were using magnesium and B6 and seeing improvements. Other parents shared with us that probiotics and digestive enzymes were helpful. Another parent recommended a nutritionist out east who was helping children with autism. In November of 1999, we heard the secretin story on the news one night. In 2000 mercury, thimerosal and chelation exploded onto the scene. The earth did keep turning on its axis, and more and more became understood about the biology of autism over those next few years. New treatments were theorized and tried: IVIG, methyl-b-12, HBOT, auditory training, listening therapies, Rapid Prompt Method, PROMPT technique and more. In recent years the role of mitochondria in relationship to autism has been studied, shedding more light on the medical issues related to autism. Most recently cerebral folate deficiency and the role of autoantibodies to folate receptors has come to the forefront of autism research. As a result many children have added leucovorin to their treatment plan, and the benefits have been substantial.
I said all that in order to say this: I look at the past, and it’s full of discoveries and advances in treatment for our kids. My neurotypical daughter is a physics major in college, so we are fans of Albert Einstein at my house. He said a lot of interesting things in his lifetime, and many of them had little to do with quantum physics. In one of my favorite quotes he said, “Learn from yesterday, live for today, hope for tomorrow. The important thing is to not stop questioning.” Our yesterday includes fifteen years of research that have resulted in many new treatments for our kids. And because we won’t stop questioning, I have hope for tomorrow. Many of our kids still have a long way to go. We don’t know everything yet about how to prevent or reverse autism. There is more yet to be discovered. So while there are days when I feel like we have done it all for my “tough nut.” I don’t lose hope. I believe that the next fifteen years will be as full of new developments as the previous fifteen. I have very real hope for tomorrow.
What else can we do to sustain hope and motivate us on this path? Don’t go it alone. Surround yourself with like-minded parents and professionals who will encourage you in the tough times and celebrate with you when your child makes progress. Get involved in local autism groups where you can learn, share information and stay connected to other parents on this autism journey. If you are lucky enough to live near one of TACA’s 25 chapters, you can attend TACA meetings and Coffee Talks in your area. TACA families are a great source of support, information and inspiration. Stay connected with other parents on this journey via the internet, through facebook, meet-ups and yahoo groups, like TACA-USA. If possible, attend conferences where you can hear the latest research, talk to the doctors in person, and compare notes with other parents.
TACA has developed really useful tools and programs to make this journey easier for us as parents. The TACA website is loaded with information on almost every imaginable topic related to autism, including a fantastic series of articles giving parents strategies to save money and do “autism on a budget.” The “TACA Autism Journey Blueprint” can also be found on the website; it’s a step-by-step plan for the first three years after diagnosis, including internet links giving more information about each step along the way. Take advantage of the live chat feature on the TACA website which enables parents to ask a question and get help in the moment. TACA’s Parent Mentor Program gives families access to a group of experienced, trained, supported parent mentors who are available to help parents navigate this autism journey. It’s an amazing opportunity to get one-to-one help from another parent who’s been on the autism journey for a few years and can share his or her experience and resources. To get a Parent Mentor, read the program guidelines and submit the application on the TACA website. If you feel ready to help another family, you can also find the information you need to become a TACA Parent Mentor on the website as well. It’s completely exhilarating to use what you’ve learned along the way to help another family find real hope and see their child feel and function better.
One more thing is important to hope, and it often goes unrecognized. It’s you. Yes, you. You’ve got to take care of yourself. It’s exhausting to do what we have to do every day — cooking for the diet, running to therapies and doctor appointments, giving supplements, internet research, not to mention taking care of other children, keeping a marriage together, and working outside the home. Hope motivates us to attempt this herculean task, but a chronically exhausted, overwhelmed person can not mentally sustain hope. This autism journey is a marathon, not a sprint. So pace yourself. Eat well, try to exercise a bit, and get some sleep. Get some time away from autism in whatever way is meaningful to you — see your friends, have time with your husband and other children away from autism, read some fiction, get your hair cut and read a copy of People Magaaine, take your dog for a walk, or sit in a warm lavender-filled bath when everyone is asleep. Just make sure you take care of yourself, too.
I was sitting with my son’s physician before writing this article, and I asked her, “What would you say to parents about hope?” She thought for a moment and said, “Well, what’s the alternative?” Without hope, what’s left? Despair. Despair paralyzes people. Despair says you can’t make tomorrow better, so why try? It takes a lot less energy to engage in despair, but it’s a lie. There are scores of dietary, medical, therapeutic and educational interventions that have proven to help our kids. Despair has nothing to do with reality. Despair is just not logical. Educating yourself and taking action is logical. Hope is real.
So what’s next for my “tough nut” kid? There are days when I feel like we’ve done it all for him. But, guess what, we haven’t. I just found out he is severely growth hormone deficient. Like any good autism mom, I have been googling human growth hormone. I learned some amazing things. Growth hormone does much more than make your skeleton grow. It has a role in healing and tissue repair. It has a role in methylation. It is also an immune modulator. Who knew? So next on our list is human growth hormone injections. I am hoping for big things. And I hope I never stop hoping.
Diagnostic Criteria Changes: What Your Family Needs To Know
Coming up in May 2013, proposed changes to the DSM diagnostic criteria will greatly affected the lives of families living with autism. Over the last week, the media has picked up with this story in a big way.
In the 12 years history of TACA I have never heard of a family excited about an autism diagnosis and the “abundant” services available to their child. This is an argument some in the media are providing for the proposed diagnostic changes (1). Some articles are describing the problem and concerns in a good way for families that had little help before may have little to no help after May 2013 (2).
As with every topic important to our children, TACA wants families to become educated on any issue that will greatly determine if your child qualifies for support or doesn’t. In December we published an article addressing this important issue and how it may impact families. To get up to date, please read: http://www.tacanow.org/family-resources/autism-vs-aspergers-syndrome-diagnosis/
What we do know in the 12 year history of TACA,
- Families are often fighting a very uphill battle for the little support they receive. Nothing comes easy.
- Over the past four years due to economic issues, services available to families have drastically been cut from state budgets.
- Often the front line providers to families living with a child affected by autism are health insurance companies and school districts. Like families, these resources are overwhelmed with the increase in autism and the needs of children living with autism.
- We agree the diagnostic criteria needs to have a better description about the individual and what is needed to help them make meaningful progress to live their lives to the fullest potential. We cannot just ignore an individual in need because “they are not autistic enough”. This is a recipe for disaster.
- We want to CDC to take the opportunity and update the Autism Spectrum Disorder (ASD) numbers as soon as possible. Taking away the numbers of those affected through diagnostic changes does not make the issue go away. Autism is still very much a crisis affecting 1 in every 91 children (3). Our families deserve an update to this important statistic.
The American Psychiatric Association (APA) has recently opened for more comments from any concerned parties. The best route to share your views and the proposed changes are via email at dsm5@psych.org. You can read updates and obtain more information from their website at www.dsm5.org.
All of us at TACA realize this will affect the hundreds of thousands of families living with autism. We will be watching this issue closely and sharing updates often with our members. Your first and most important step today is: Get educated whether or not you have a child with autism. This issue is critical and will affect every household – not just those living with autism.
References:
3) http://www.tacanow.org/family-resources/latest-autism-statistics-2/
Hope by the Numbers…
If you missed this great article in the last printed newsletter, check it out here.
Since 2006, TACA has provided medical scholarships to families living with autism. These scholarships help families pay for physician-prescribed services, and include stop gap medical treatments, independent assessments, and other necessary crisis funding.
The stories we hear from scholarship recipients warm my heart. This past year, we asked our scholarship recipients to help us collect data, to provide quantitative measures on each child’s progress, and the overall effectiveness of the scholarship program.
To gauge progress, recipients provide Autism Treatment Evaluation Checklist (ATEC) scores pre and post treatment. The ATEC is a great tool for clinicians and parents to evaluate treatments based on autistic symptoms (1). This is how it works: the lower the ATEC score, the better the child is doing. The higher the ATEC score, the more likely that the autistic symptoms for the individual evaluated are more profound. The goal of families is to have scores drop after treatments (both medical and traditional therapies).
The official ATEC scores from TACA families have just started coming in, and the drop in scores is pretty amazing! These lowered scores provide tangible hope for just about any family with a child on the spectrum. Based on preliminary data from the last two ½ years, and a small sampling of scholarship recipients participating in currently collecting official data, here is a summary of what we found:
• 13 families with 13 children from 7 states provided ATEC pre and post-test ATEC scores
• 12 of 13 families showed a drop in ATEC scores following treatment, indicating improvement in functioning.
• ATEC scores dropped an average of 26 points, with a marked 33% improvement from pre to post treatment test scores (Note: ATEC pre and post scores collected averaged 8 months apart.)
What this means is that for 12 of 13 families, ATEC scores decreased and their children’s autistic symptoms greatly diminished. We have received great anecdotal feedback in addition to the data reported above. This is one parent’s story:
When my husband and I were given the autism diagnoses, it felt like our world was no longer in color. Our world had turned into black and white. Our future plans were shattered by this word, our hearts torn into pieces.
After researching the biomedical world, I was eager to begin my journey and help my boys become healthier, but I realized that it was going to have a price. Luckily I found TACA. Words like Hope and Faith were no longer in my vocabulary, not until TACA came into our lives. There are not enough words to describe our gratitude. TACA has given our family the opportunity to see our lives in color. TACA has given our family the opportunity to look ahead at a brighter future. After a few months of beginning biomedical treatment, my family, friends, teachers and therapist have noticed the change in my boys. Thank you!
Typically, each TACA print newsletter features a family with an inspiring story. This time, we can report success for these twelve families, who are eager to share that autism is treatable! And we will keep fighting for that 13th child, who has yet to see the progress we are all hoping for. At TACA, we are here to help guide you on your journey to help engineer positive outcomes in our children – hope is real.
Visit www.tacanow.org for more success stories, information about ATEC scores and how to apply for TACA scholarships.
Personal Note from TACA Executive Director, Lisa Ackerman
2011 is a wrap and as usual it feels like another year went by in the blink of an eye. It’s only in reflection that I am reminded that what feels like a blink now wasn’t. TACA was a whirlwind of activity all year; helping families, building relationships, and expanding our community. This could not have happened without the people dedicated to the TACA mission. Thank you all.
Since TACA’s beginnings almost 12 years ago I have been sending out an end of year update. As usual I’d like to start with a Jeff update. He is my TACA inspiration and keeps me going.
Jeff, now 14 years old, is a joy and blessing to our family. He continues to surprise us. He is in a regular 8th grade class. There are struggles with aspects of reading comprehension, essay composition, abstract curriculum and math reasoning but works diligently to keep up. Jeff always seems to rise to meet new challenges with a smile on his face and a spirit that inspires everyone around him. Jeff’s language and social skills continue to develop. He likes girls, has developed new friends, participated in his school play and was student of the year for his 7th grade class.
I share this background about because my family was told many times “there is nothing you can do”. I marvel with happiness that he continues to progress and gain new skills and awareness. It is my sincere hope that other families will be inspired by Jeff to continue to fight for their child. I know there are children with an autism diagnosis who excel well beyond Jeff and others who, despite intense intervention, have made only small gains. I also know that every little bit we can do to help our kids make developmental progress makes a difference. Our kids need us to never give up.
Now on to TACA 2011! Here’s some program highlights:
- Chapters & Meetings – TACA’s volunteer chapter leaders and key volunteers brought the TACA mission to their community. 25 chapters and held 300 meetings & coffee talks across the U.S.
- Mentors – almost 300 connections were made with TACA trained parent mentors to families needing help on their autism journey.
- TACA answered over 8,000 calls and emails for help in 2011 providing Real Help Now to families across the country.
- A Blog was born – I have had a new outlet to share via the TACAnowblog.com with 26 posts (plus 2 guests posts) since the April launch.
- Real Help Now Live Chat – Almost 550 Live Chat sessions occurred on the TACA website. This program was completed with a mostly volunteer group of parents.
- Facebook and Twitter – News stories, TACA family friendly recipes, tips, and TACA stories are posted daily. Hundreds were posted in 2011.
- Additional TACA programs across the U.S. – Read more about TACA’s programs.
As 2011 comes to a close TACA counts almost 28,000 families affected by autism in its community. On average we over 450 new families a month contacted us.
I know I’ve said thank you in general but I’ve got some specific shout-outs for the TACA staff. They make all things TACA possible. Thank you Violette, Stephanie, Trang, Diana, Amy, Mari, Moira, Sarah, Summer, Jackie, Susan, Holly, Roxanne, Julie. Thank you to all the volunteers. Thank you to the TACA Board who serve, guide and fundraises to help make it happen (Glen, Pat, Dan and Chad).
Thank you to our Volunteer Chapter Coordinators and the over 250 mentor families who serve selflessly. You are core to our mission of Families Helping Families and ensure that are programs reach families local communities. TACA would be lost without this incredibly dedicated team of volunteers.
2011 was our second year for TACA Ambassadors and Physician Advisory Team. Ambassadors and Physician Advisors support TACA in their professional circle and talk about curing autism on a regular basis. These friends have made invaluable contributions to help champion the mission.
TACA has learned to do MORE with LESS. As with all non profits the economy has had an impact on donations. Despite this we have found ways to acquire help and continue our programs. Much gratitude to the almost 2,000 businesses and individuals that made donations in 2011. Our major donors include: Oakley, Jack FM, Oxyhealth, Kirkman Group, OC Community Foundation, Hope4Hanna, Bikram Yoga in Silverlake, Buchanan Street Children’s Charities, Volcom, Gladiator events with Dan “Nitro” Clark, Inhouse IT, Midwest Insurance, Sunwest Bank, Ryan & Paige Getzlaf, Hawaii Autism Foundation (Beautiful Son Foundation), The Carney Family, Warne Family Charitable Foundation, Elizabeth McCoy, Hawaii Hotel Industry Foundation, Hyperbaric Therapy, Michael Reese Enterprises, Microsemi, Stephen Murray, and of course our long relationship with Pacific Life Foundation. To everyone who helped us financially, we appreciate you believing in and supporting our mission.
Finally, to TACA families & friends – The hope I have for my child and all our children remain –Together, we will work towards the future and create positive outcomes for all our kids. Happy new year! Thank you for being a friend.
All my best for 2012 & beyond,
Lisa Ackerman – TACA Executive Director & Founding Board member
Mom to Jeff & Lauren, wife to Glen
Autism and the Holidays…
I am a single parent of two teenagers with ASD. I live 3000 miles from everyone I grew up with, and my family. My ex lives 1000 miles away and has no contact with our children. I live hours away from friends. I live here because autism services are tremendous, but I don’t know people here. There are a ton of “how to survive the holidays with family” articles, but this is not one of them. This is a story of adaptation and making peace.
Autism is isolating by its very nature. Autism isolates children from their families, their siblings, their peers and their world. Autism isolates siblings from friends, communities. Autism isolates parents from their children, their work, their friends and their money. Autism isolates. Perhaps at no other time in the year is it felt as severely as during the holidays. Nostalgia is brutal.
Now, let’s look at it another way. Imagine a low-stress holiday. Imagine peace and quiet, without all the commercial hustle and bustle. Imagine a place where autism is small and peace is big. Imagine not going insane (and taking everyone else with you) to make sure all 23 dishes are ready and on the table at the same time. Imagine not listening to your family fighting, or having to hide everything breakable from your child – or hide your child from family members, no matter how well-meaning. Imagine not having to run after your child the entire time making sure they don’t elope or eat non-safe foods/plants/stuff. Imagine no shitty parenting advice (because if you would just spank him, that autism would go away). Sigh.
Do you remember when you got, or gave, a gift that came in a huge box, and the box itself became the best toy of the day providing hours of play?! That’s what this is like. It’s pretty awesome.
I recently talked to a mom of a child with autism that was heartbroken and ashamed that autism has taken precedence over the family’s long-standing holiday routine. For several years, they tried valiantly to incorporate autism into the status quo traditional holiday plans but autism kicked its butt, and theirs. They took it as a defeat. I am here to tell you otherwise. I am here to tell you that status quo isn’t mandatory, isn’t the best, isn’t for everyone.
Do we lock ourselves up? Hell no! We just have a new reality. A quiet, thoughtful holiday. A menu filled with delicious allergen-free foods, so they can be left out without worry of happy, hungry fingers, that is ready whenever the heck it’s ready. We might have the turkey for lunch, maybe dinner, maybe in between, maybe at 9pm. Who cares? Can you feel the stress leaving already? How would you like to get enough quiet time to actually be thankful on Thanksgiving, jolly at Christmas, have reflective dignity at Kwanzaa or grateful dedication at Hanukkah? What a concept.
Consider for a minute – no one to judge you for spilling wine down your shirt, for burning the cranberries or even that you’re still in your pajamas at 6pm (or that your pants were inside-out all day). No one to constantly shush your kid with autism, just let him be. Shouldn’t he get to enjoy a day off too? It’s time to come to grips with your life and ENJOY it. No matter what. Revel in it. It’s all you have, after all.
We do have tremendous, supportive friends all over the world, thankfully. And every holiday, we get to “have” dinner with them – via Skype. We can put the laptop on the dinner table and actually have dinner with our friends, even overseas! We never miss birthdays either, thanks to “phone shots”, which was born out of necessity from missing too many celebrations because we were thousands of miles apart. Necessity is the mother of all invention, right?
Before you let the status quo make you feel bad, alone, defeated, rethink holidays. Rethink peace, togetherness, tranquility. Adapt and thrive. And enjoy your holiday, no matter how you celebrate.
Living Healthy: Navigating Food Allergies
Persistent exposure to allergens in the environment and/ or food can make anyone feel miserable! Based on new research and parent feedback, we know diet AND ALLERGIES greatly affect how children with autism on they behave, sleep and learn.
Parents living with a child affected by autism have much to consider in the world of allergies. Finding out what to eat and more importantly what not to eat can yield wonderful clues to children suffering from undiagnosed allergies.
Over the past decade, laboratory testing (covered by most insurance companies) has improved greatly in identifying potential allergies. Thankfully, TACA has some tools that will help families navigate the allergy waters to help improve your child’s health.
Check out the following resources:
A wonderful, short video on “WHAT IS A FOOD ALLERGY?”
http://www.allergyhome.org/schools/food_allergy_awareness_for_school_kids/
TACA has updated the allergy information page to include more suggestions for evaluating food allergies:
http://www.tacanow.org/family-resources/allergy-testing-information/
Research on dietary intervention & food allergies:
http://www.tacanow.org/family-resources/research-on-dietary-interventions-in-asd/
How to start an allergy free diet for your child:
http://www.tacanow.org/family-resources/going-gfcfsf-in-10-weeks/
Navigating Insurance Coverage for Autism Treatments:
http://www.tacanow.org/family-resources/insurance-coverage-on-a-budget/
The old adage “garbage in, garbage out” applies perfectly to our children. Testing for environmental and food allergies is a wonderful first step for families to help their child feel and act better. Here’s to your child’s improved health!
WHAT CAN ONE PERSON DO?
CHANGE THE WORLD!
Holding the banner: Left: Ralph Ma and on the Right: Manoj Kanagaraj. The center of the photo is TACA mom Lore Flavell and counselor to the original TACA Autism Youth Ambassador group.
Two years ago my husband Glen helped launch a pet project, the TACA Autism Youth Ambassadors (AYA). Spending time with these inspirational young leaders has since become one of our favorite things to do. I have had the great fortune to speak at several club meetings. The Youth Ambassadors bring such positive energy and serve as peer role models to other youth, always promoting TACA efforts and advocating for children living with autism.
Ralph Ma started the first AYA at Troy High School in Fullerton CA. His efforts are monumental! AYA’s goals are simple: raise autism awareness, befriend kids on campus living with autism, and help raise funds for TACA’s mission. (Check out the website Ralph created to support the AYA: http://autismambassador.org/index.html).
It brings me so much comfort and hope that there are teens like Ralph and his fellow AYA members who wish to befriend children living with autism – like my son Jeff – and are not worried about how cool they look or what their friends think. This effort brings tears to my eyes. I want to clone them all and populate every high school in America with Ralphs!
Amazingly enough, I don’t have to clone anyone because Ralph is doing it for me. Over the past two years Ralph and his club have helped mentor 24 other campuses to do the same – care about autism and do something to support families. I cannot remember a single TACA event in the last few years without our friend Ralph and the other youth ambassadors there to lend a helping hand. They especially love to work directly with the children and families we serve.
I had to share what this young man has done with my TACA friends. The rest of this blog is in Ralph’s own words; taken from his personal statement for his college entrance paperwork. I know wherever Ralph goes success will follow. I am proud to know him and his colleagues. As a parent, I am beyond grateful for his contributions and for his commitment to change paradigms and be a friend to many with autism. Thank you Ralph and all of the TACA Youth Ambassadors at every participating high school. You are a shining example of how one person can truly make a difference and change the world!
———–
Ralph Ma- TACA Youth Ambassador Founder
Personal Statement
How did I first get involved with autism?
This is a question I have often received from people who have met me. For me, the awareness for autism all began when my cousin was born 6 years ago. While she was a healthy 8 pound baby with beautiful cheeks and insatiable curiosity, her language development was slow for her age group. This greatly worried my family, who like many other families of children with slow development, began to worry. At that time, autism was a fairly unknown subject to my family and me. It wasn’t that we were terrified by the prospect. It was just autism was so foreign and seemed to be something that affected only few members of our society. So as my family began to prepare for the first visit from a health giver, I began my life long journey to understanding autism. The scientist in my nature scavenged the latest news as I methodically looked for a clear answer to the question: What is autism? The more I looked the fewer answers I found. There seemed to be no definite answer to my question. However, I remember the first time I saw the statistics for autism; I did a double take. 1 in 91 children. 1 in 91. How come autism is not broadcasted every night? How did I not know this before? How come I haven’t heard of any organization that raises awareness for a disorder so prevalent? I was flabbergasted by the lack of action inside my own school and community. I was also ashamed at my own lack of awareness as my school actually houses a large special education department. Knowing that I had to take some action, I met with Mrs. Flavell, the wonderful adviser to Troy’s Autism Youth Ambassador (AYA) club and a mother of a child with autism. It was she who guided me and provided me with my initial grasp of autism.
My cousin was not diagnosed with autism. Yet the experience for my family was enough for me to understand the tension and apprehension of many other families suspecting of having an autistic child. It was time to do something.
Raising my own awareness
I realized that I needed to raise my own awareness before I can spread awareness. To gain expert opinions, I received interviews from the President of Grandparent’s Autism Network Bonnie Gillman, Dr. Thomas Lin, Dr. Anju Usman, and Dr. Jerry Kartzinel. Through my interaction with each individual, I gained a personal insight into autism and began to sharpen my own viewpoint of the many clouds surrounding autism. As a junior, I even decided to conduct my own epidemiological study into autism as I took more than 100 surveys of families with autism in order to understand a possible relationship between gastrointestinal problems in autistic children and self-harming behaviors. My findings demonstrated that autistic children with gastrointestinal problems were 1.7 times more likely to commit self-harming behaviors.
However, despite my reading and research, I felt the best way to understand autism is to volunteer myself to work with children with autism. I wanted to know what they are like. My first experience was TACA’s family picnic in which I was in charge of rides. I think even to this day, what stood out to me the most about children with autism was that no two children seemed alike. Each child had his/her own qualities.
Contradicting all the previous rumors and outdated beliefs, autistic children are not cold and distant. Though the spectrum is wide, for me, it has always been easy and a pleasure to speak with a child with autism.
In the past year, I have increased my volunteering greatly. I joined the Hoopstars basketball league as a referee, court helper, and assistant coach. I found great joy in helping disabled children play a sport that I deeply enjoy. Then this recent summer, I interned at the KiDA School for autism. As camp counselor, I arranged the sports camp and the chemistry camp. I remember the day that I tried to demonstrate the reaction between vinegar and baking soda to the students. Afterward, we ended up giggling as we created a potion of salt, sugar, soy sauce, soap, and dirt; the fun was definitely worth the clean up. Furthermore, I remember playing Star Wars with Allan by using swimming pool noodles as light sabers. Our duals were epic and I couldn’t have felt more connected with Allan. I remember one time when he held my head as I feigned death and he whispered, “Don’t die, I’ll be here.”
Furthermore, I have increased my participation in raising awareness by expanding the AYA program. I have always loved TACA events and I wanted to do more. It took a while, but I learned how to set up a website and manage it. I was pretty proud when I typed in the URL for the first time and squirmed as the loading bar slid past. I have to admit, I squealed a little bit when the page loaded and the fruit of my work displayed itself.
For the Future
I hope to continue to work with TACA in order to expand AYA. I feel the organization has so much potential. In order to fully address problems concerning autism, it is important to raise awareness in all parts of society. By raising awareness in the teenage population, we can encourage these enlightened individuals to grow up and contribute to solve problems regarding autism. Furthermore, it will greatly help the diversity and tolerance of society if autistic children can fully interact with their teenage peers. Knowing the emotional reward in working with children with autism, I wish to share that joy with other teenagers.
As I go to college, I hope to carry AYA with me. I will be exposed to more resources that I can adapt to help further spread our message and increase our effort. Hopefully someday, I can move from the Youth Ambassadors to the Senior Ambassadors. After all, autism is not just going to be a cause I fight for now. It will be cause dear to my heart for the rest of my life.
Ride for Autism
I just wanted to recount a short story that I will always remember. I remember volunteering for the Ride for Autism event. My given task was to pass out TACA stick-on tattoos to the people attending the event. At the family picnic, the tattoos were very popular with the children and I was glad to do this job. However, the guests to this event were middle aged bikers, many with cigars hanging out of their mouth. I remember walking up to a man with sculpted arms filled to the square inch with real body art. I remember asking him sheepishly if he wanted a TACA tattoo. He looked at me intensely for what seemed like forever. Then he grinned and took the tattoo. I will never forget that.
