Get Blog Articles Delivered To Your Inbox
This Mother's Day, let's give a big shout-out to the Autism Super-Moms who have paved the way for the rest of us with their unwavering dedication, creativity, bravery, and forward-thinking. I am in complete awe of all of these remarkable woman and their tremendous accomplishments and am forever indebted to them for their ongoing work to better my son's life and the lives of so many others who share his diagnosis...
– Mom to Temple
When few had even heard of Autism, and those who had were attributing it to "refrigerator mothers" who failed to bond with their children, Eustacia paid no heed to the social stigma associated with having an autistic child and instead focused on raising her daughter, Temple Grandin. Despite so-called experts' urgings, Eustacia refused to institutionalize her then non-verbal and often violent daughter. Her unrelenting drive to educate and socialize Temple was largely responsible for Dr. Temple Grandin becoming not only one of – if not the – most well-known and respected Autism advocates today, but also an internationally recognized expert within the agriculture and cattle-management industry. Eustacia tells her story in Thorn In My Pocket. Watch this touching video of Eustacia's address to Autism Moms and families everywhere.
Liane Kupferberg Carter
– Mom to Mickey
As a professional journalist, Liane advocates for and raises awareness about Autism in an impressive list of publications that include The New York Times parenting blog, Motherlode, The Huffington Post and The Thinking Person's Guide to Autism, to name only a few. In her capacity as a member of Autism Speaks' Parent Committee, she helped edit the organization's Transition Tool Kit. Liane's writing is powerful and direct, often calling out people for their attitudes and behaviors toward her son and others on the Autism Spectrum with blogs like, The Way You Look At Him and The One-Two Punch of Autism.
– Mom to Marty
Award-winning attorney, author and media personality, Areva helps parents everywhere with her highly acclaimed book, The Everyday Advocate: Standing Up For Your Autistic Child. Areva, a highly sought-after public speaker, makes regular appearances on The Dr. Phil Show and Anderson Cooper, and is a syndicated columnist. Areva graduated with honors from both the University of Chicago and Harvard Law School and is founding and managing partner of Los Angeles Law firm, Martin & Martin LLP. Areva's benevolence has helped more than 15,000 families in low-income communities across California through the Special Needs Network, Inc., a non-profit organization she co-founded to support families who have children with special needs.
Holly Robinson Peete
– Mom to Rodney Jr.
The HollyRod Foundation, a non-profit organization created by Holly and her husband, former NFL quarterback, Rodney Pete, provides tablet computers and apps to people with Autism in order to "Give the Gift of Voice", as their campaign is so aptly named. This talented actress and singer collaborated with her daughter to author My Brother Charlie, a heartwarming children's book about a boy with Autism written from a sibling's perspective. Holly graciously uses her celebrity status to raise awareness about Autism and in 2010 participated in the third season of Celebrity Apprentice, setting a show record for raising the most funds for a charity on a single task. Holly is a Board member of Autism Speaks and her philanthropic efforts have earned her numerous awards and honors.
– Mom to Tony
We Autism Moms can be a tough bunch. We have a lot on our minds and we aren't afraid to say it! So can you imagine managing over 21,900 of us? As a moderator of the ever-growing Facebook group "Autism", Nunu does just that. On a daily basis, Nunu monitors posts, welcomes new members and ever so diplomatically plays referee during the occasional disputes that inevitably arise every now and then. Nunu's hard work and dedication give all of us Autism Moms – and many others – a unique and invaluable forum where we can speak our minds (politely, of course!), learn and share.
– Mom to Jeremy
An award-winning writer and speaker, Chantal is also the Founder of Autism College, a unique online training website for Autism parents, teachers and professionals. Jeremy's beautiful quote says it all, "My story is like Helen Keller's, the deaf, mute, and blind girl. Helen Keller had a teacher, Anne Sullivan, who taught her and took her out of isolation. My first great teacher was my mom..." Through Autism College, speaking engagements, her own blog and guest blogs on Huffington Post, as well as her six books including the latest, A Full Life With Autism, Chantal shares her years of experience as an Autism Mom and educator with countless other parents and professionals alike.
– Mom to Carly
Survivor. Champion. Self-professed "Autism Warrior". Tammy is all of these and more. Tammy quips that she is the manager of "Carly Inc." when describing the myriad of responsibilities she assumes that have enabled her autistic daughter, Carly Fleischmann, to thrive. Carly was diagnosed with severe Autism as a toddler. Now a teenager, Carly is a famous Autism advocate whose story of an awe-inspiring communication breakthrough is revealed in the family's book, Carly's Voice – Breaking Through Autism. Tammy's ongoing advocacy efforts have helped countless Canadian families and she has let nothing, including two battles with cancer, stand in her way when it comes to getting what her daughter and others on the Autism Spectrum need to reach their utmost potential.
– Mom to Philippe
Amanda Telford actually did what many overstressed, financially strapped and desperate Autism Moms have only thought about. After exhausting all possible avenues to find help for her severely autistic adult son, she courageously dropped him off at a local government office with a note explaining why. Her actions have garnered support from around the world and hopefully finally gotten the message across loud and clear that our governments need to not only recognize, but give support to the many families like Amanda's who are desperate and struggling to care for their aging children with Autism. Learn more about this courageous Autism Mom and her gut-wrenching decision.
– Grandmother to Christian
Suzanne and Bob Wright had all of the resources and connections they needed to give their grandson every therapy, service and comfort he required after he was diagnosed with Autism in 2004. However, they decided to do more. Much more. Within two years of receiving Christian's diagnosis, they had founded Autism Speaks, an organization that has helped millions of individuals and continues advocating for and raising awareness about Autism, providing funding and resources to families affected by Autism, supporting Autism research and lobbying government for legislation and policies that will further their organization's cause. Suzanne has addressed the United Nations in her advocacy efforts and continues to speak around the world to give Autism a voice like it has never before had.
You – Mom to 1 of every 88 children
Give yourself a well-deserved pat on the back. You've more than earned it. Few truly appreciate the struggles that you have gone through, and continue to endure, all in the name of love for that very special person who has changed your life forever. You can truly appreciate how precious one single spoken word is. You give of yourself when there is no more left to give. Even though you might not get the opportunity to hear it, know in your heart that as an Autism Mom, you are loved in a very different, yet ever so special way.
We all have to make choices in life. In doing so, most of us go through a similar thought process of identifying and then weighing the pros and cons of our options to arrive at a decision that makes the most sense.
As Autism Parents, my husband and I have had to make more than our share of decisions with respect to our son, Michael, and his Autism. These have ranged from what type of therapy he should receive, to what medications he should take, and the list goes on. Some of these decisions have been easier to make – "no brainers", if you will – and others not so simple or straightforward.
One such contentious issue focuses on Michael's attachment to his doll, Kiki, to his cherished "blankie" and to Barney the dinosaur and other plush toys that he loves but that are traditionally associated with those much younger than my 18-year-old son. Yet Michael continues to adore these treasured items and takes great comfort in having them with him. Many professionals have suggested that my son is too old to be carrying around such items – especially in public – and that we shouldn't allow it. They encourage us to instead focus on introducing him to more age-appropriate items and interests.
While I am almost always 100% on board with our consultants' advice, when it comes to this issue, I just can't be swayed. Here are my reasons...
- I'm all for trying to expand Michael's horizons, but more often than not, he's simply not interested. Let's face it... people with Autism don't like change. And if we are once in a while able to get him onto something novel, it's after months have gone by to give him enough time for the necessary repeated exposure. So, by the time he actually likes something new, it's already passé as his 'age-appropriate peers' have already moved on to something else.
- Do I get looks when my son is out in public with a doll? Of course. Do I care? No. There used to be a time when I did care – a lot – but I've moved beyond this. Life is too short. If people can't deal with it, it's their problem; not mine.
- It's not like Michael is on the cusp of being 'normal' (as much as it pains me to even use this word), and that carrying these things is the only thing that sets him apart from those who are neurotypical. Michael is significantly impacted by Autism and I've come to terms with that. Liking juvenile toys is just one of many, many things that make him different from other 18-year-olds.
- In fact, the sight of a six-foot-tall young man holding a Barney doll is something that I personally believe is actually helpful in garnering understanding from a mostly uneducated public. Many might not recognize "Autism" from one of Michael's sudden yelps, his insistence on walking around a planter in the mall three times, or his refusal to sit on a bench in a restaurant. (He'll only sit on a chair.) But, most will realize that 'something's up' when they see him clutching a doll. And it is my hope and my belief that this in turn promotes greater understanding and encourages people to be more accommodating.
Yet another decision we have had to recently make for Michael has to do with some new compulsive tendencies that are causing him to suddenly bolt away so he can can satisfy his almost constant urge to re-touch things – even if it means rushing into traffic, walking on the edge of a bridge or doing something equally hazardous. Our behavioral consultant came to the rescue with what I thought was an ingenious solution... Teach Michael to respond immediately to a specific word we come up with so that when he hears it, he instantly freezes on the spot and counts to ten. So, we came with the word – "freeze" – and began to teach Michael the drill. The good news... he actually likes the routine and learned to comply with it very quickly. The ?bad? news... every time he reaches "ten" he blurts out an emphatic and enthusiastic "blast-off" – his own personal touch, most likely echoing something he has seen in one of the many videos he watches. So the upshot is that while the treatment seems to be effective in helping keep Michael out of harm's way, that blast-off is firmly ingrained into the risk-reducing routine... talk about social stigma!
Is our "freeze program" the right thing to do, knowing it is pretty much guaranteed to raise some eyebrows from curious passersby when Michael is out in public? I weigh all of the facts and ask myself the more important question, "What's best for Michael? In the end, I choose safety over stigma, just like I choose content versus conspicuous by allowing Kiki to accompany him on outings. Because that's what's best for Michael.
To feel the wind hitting your face as you reach top speed on your bicycle is an experience that no child should have to miss out on. Sadly, many kids don't get this chance. Often, this is due to a physical and/or cognitive disability that prevents them from being able to ride a standard bicycle.
And what's that much more frustrating is that while indeed special bikes do exist to accommodate many different types of challenges, they come with high price tags that put them out of reach for most families who are already struggling to meet the additional financial pressures so often faced by those who have a child with special needs.
This is why I am overjoyed to help spread the word about a very important event...
For the second consecutive year, Friendship Circle is holding The Great Bike Giveaway, a national contest giving away adaptive bikes to children with special needs. They are partnering with bike companies from around the US to provide some of the best adaptive bikes to the children and young adults who need them the most.
Here's a peak at the awesome prizes being offered:
|Buddy Bike Family BB102-AL-8||Rifton Adaptive Tricycle||16" Terrier Tricycle||Flaghouse Port-O-Trike|
And there's more good news... YOU can help ADD MORE BIKE PRIZES to the contest by PROMOTING the contest to your friends and family, and by DONATING to one of the four bike categories!
The contest closes on May 12th so Enter and Donate Now!
Six years ago, an autistic young man by the name of Jonathan Brunot could not complete one lap around a track. On April 15, 2013, 24-year-old Jonathan will be running his 9th marathon! And what makes this event that much more special is that he'll be doing it in support of Autism Awareness Month.
When Jonathan's brother, Verlaine Brunot, reached out and asked me to help spread the word about Jonathan's latest conquest, I could not have been more honored or proud.
5 Ways You Can Support Jonathan And Others Who Have Autism...
- Like his Facebook Page
- Donate to Autism Speaks in his honor
- Read more about Jonathan and share his story
- Start or become active in a local running club for individuals on the Autism Spectrum
Track him via Athlete Alert on race day and receive alerts when he crosses 10K, halfway, 30K, 40K and the finish line! Text the word RUNNER to # 345678. Wait for a confirmation text
Simply reply back to the confirmation text with his bib number: 20973
Share this graphic to help spread the word!
Getting To The Heart Of Autism Awareness
Dear Jimmy's Neighbors,
I received the most distressing message via Facebook last night from a man by the name of Jimmy. While Jimmy is in actuality a stranger to me, I feel that in many ways I know him, in that we share a very special common bond. You see, like me, Jimmy is an Autism Parent. And like many Autism Parents, Jimmy and his wife don't get to experience many of the things that most other parents of non-Autistic children often take for granted... something as special as hearing your child utter the words "I love you" for the first time, or something as basic as a good night's sleep.
In his letter, Jimmy describes that all too familiar scenario of his son "waking up in the middle of the night full of energy, hopping around his room and giggling and laughing at the top of his lungs." Sleeping problems are common among autistic individuals so although I could immediately empathize with Jimmy's situation, I was not at all surprised by it.
Jimmy's letter continued, but not once did he mention the many other difficulties that are so commonly associated with having a child on the Autism Spectrum... the financial devastation brought on by the need for therapy that the majority cannot afford; the profound sense of loss and grief a parent experiences upon discovering that their child will most likely never marry, hold down a job or establish any meaningful friendships for the rest of his life; that individuals on the Autism Spectrum are three times more likely to be bullied than their non-Autistic peers; that children with Autism become adults with Autism who often have no one to care for them when their aging parents cannot or are no longer alive.
So why was Jimmy writing me? I was so saddened when I discovered that it was about problems he was having with his neighbors. It seems that some of you who reside in the same apartment building as Jimmy and his family have not been as understanding as I think you could be about the plight of Jimmy's son. In fact, he states that on two occasions someone in your building has filed a report with the New York City Administration for Children's Services.
Now let me be absolutely clear here. I don't know Jimmy and I don't know any of you. If indeed, you genuinely suspected that Jimmy and his wife were in some way compromising the safety and wellbeing of their son, then I support your actions 100 per cent. However, from what Jimmy has told me, on both occasions the A.C.S. found nothing wrong and closed the investigations. Could what Jimmy suspects really be true? Would someone really be willing to have a child taken away from his loving and caring parents, all for a night's sleep?
I am doing my best to remain objective here. I know all too well what it's like to be so sleep deprived that it hurts. But I also know that this family and their child need and deserve better. I know that it sounds cliché, but we parents didn't choose the Autism Life. It chose us. And with the prevalence of this dreaded disorder continuing to skyrocket, it is choosing more and more families with every passing day. And instead of helping, you are rubbing salt in the wound, a wound that is already very deep and very painful.
April is Autism Awareness Month. Let's all use it as an opportunity to learn and grow. Your story so very well exemplifies how Autism is so much greater than every individual family's problem. It is society's problem and everyone is impacted.
I understand how miserable it can be to have your sleep interupted so frequently and I know how it can make the best of us act in ways we would not otherwise behave. But I implore you to rethink your approach. Instead of finding ways to get rid of Jimmy's family, embrace them. Educate yourself about Autism. Donate to Autism research. Ask how you can help. Bring over a meal or offer to watch their son so they can grab a nap or run some errands. Brainstorm together about how you can perhaps assist them in finding a solution that can help everyone. Maybe it's soundproofing their child's bedroom. Perhaps it's all chipping in to provide the child with an iPad if his family cannot afford one, so he can have something to engage him quietly when he is uable to sleep. Above all else, be understanding.
And if all of that just doesn't sound like it's within your reach, consider moving, because as difficult and stressful as it would be for you to move, that stress and strain would be exponentially greater for Jimmy and his family as individuals on the Autism Spectrum find change to be exceptionally difficult to deal with and in some cases, even intolerable.
However, should you choose this latter option of moving, be forewarned... With statistics like the ones just released by the Center for Disease Control stating that 1 out of every 50 school children has Autism, you might very well end up with another Autistic neighbor.
With World Autism Awareness Day less than a month away, it's time for all of us to start thinking about how we can do our part to Light It Up Blue. Here are some suggestions that will hopefully get those creative juices flowing so that when April 2nd rolls around, you'll be ready!
3) Post, Tweet & Share. Social Media is a great way to spread the word about this important day!
To say that getting a diagnosis of Autism can be overwhelming is a huge understatement. Emotionally, physically and financially, Autism can quickly take its toll on an entire family. During this time of upheaval, parents are faced with the often difficult decision of what approach to take in helping their autistic child reach his ultimate potential. Doing a Google search on the word "Autism" results in enough approaches and professed treatments to make anyone's head spin. That's why I've put together what I hope will be a helpful resource for those of you who find yourselves in this very position. So here are my top ten reasons for choosing an autism therapy program that is based on the principles of Applied Behavior Analysis (ABA).
- ABA has been proven by decades of peer-reviewed, scientific research to be effective in treating people on the Autism Spectrum. Many treatments that have been associated with Autism are more anecdotal in nature. Not ABA. Its efficacy is substantiated by objective data. To learn more about the science behind ABA, visit the website of The Association for Science in Autism Research (ASAT), and be sure not to miss their informative link on "Making Decisions About Treatment and Intervention."
- There is an accredited regulatory body that oversees professional behavior analysts. The Behavior Analyst Certification Board was established in 1998 "to meet professional credentialing needs identified by behavior analysts, governments, and consumers of behavior analysis services." Certificants who receive the designation of Board Certified Behavior Analyst (BCBA) or Board Certified Assistant Behavior Analyst (BCaBA) must earn specific academic degrees and pass a board exam before awarded their designation. As registrants, they are then obliged to adhere to the Board's guidelines and code of ethics. A parent who hires a Board Certified Behavior Analyst has that extra peace of mind and protection from individuals who may claim to have experience or expertise in ABA when they in fact do not.
- A GOOD ABA program is a FUN ABA program! An important component of any quality ABA-based intervention is reinforcement. This can be in the form of a preferred toy or object, favorite movie, food, or simple pat on the back accompanied by a "good job, buddy!" Why shouldn't my son love his ABA program and his dedicated therapists? He gets tons of praise for accomplishments both big and small and is surrounded by a learning environment based on positive energy and enthusiasm.
- ABA is endorsed by many upstanding organizations including the US Surgeon General, Autism Speaks, The American Academy of Neurology, the American Academy of Pediatrics, the American Psychological Association, The Autism Society of America, the National Institute of Child Health & Human Development, the National Institute of Mental Health, and many others.
- ABA treatment is funded by a growing number of school districts, governments and insurance companies.
- Almost all individuals on the Autism Spectrum can benefit from ABA, regardless of their age or level of ability.
- ABA can be done anywhere and at any time... in school, at home, in a grocery store, library or park. It's easily adaptable to an endless number of learning environments and situations. (To learn more about the pros and cons of providing a home- vs. school-based program, read my article entitled "Should I Home-School My Child?"
- ABA therapy can be delivered by wide range of individuals. With adequate training and under appropriate senior-level supervision, front-line ABA therapy providers can include parents, siblings, friends, volunteers, college students and virtually anyone else who wants to help out and has a keen interest in learning more about effective Autism treatment.
- ABA is objective. Because it is based on the collection and analysis of data, you know when things are working and when they are not. Furthermore, when they are not working, you can understand why and change your teaching approaches to ensure that they do. To learn more about how your autistic child can benefit from data, check out my blog entitled "D-A-T-A: Not The Four-Letter Word You Thought It Was!"
- There's a lot of choice and diversity within an "ABA toolkit". Your learner will never grow tired of an ABA program that is based on a wide variety of teaching approaches and methodologies including: forward and backward chaining, activity schedules, and many others that you can learn more about on ASAT's website.
To learn more about ABA, visit AutismBeacon.com's Applied Behavior Analysis category.
- February 6, 2013
- , Therapy & Treatment › Applied Behavior Analysis (ABA) & Verbal Behavior (VB)
When contemplating the year that lies ahead of me, I started thinking about what I wanted to focus more of my time on, and lo and behold, a graphic blog was born! I hope you find it useful and can identify even one or two things that you feel will be beneficial to you, your family and your child with Autism.
When Michael was a baby, he’d eat pretty much anything I could purée. If it could go into my food processor, it would go into him. As he became a toddler, his love for food continued. That boy ate with gusto.
All of this changed, however, after his third birthday, during the time that we can now look back on and identify as his “autistic regression”. His extremely limited vocabulary disappeared altogether. So did his diverse palate. All of the sudden, he would only eat whitish-colored, bland looking and tasting foods, all of which I could probably count on one hand. I couldn’t even tempt him with ice-cream or candy.
We had our work set out for us. Not only did we have to teach Michael how to point (that took about three months), use the bathroom (that took about six years), and an endless list – yes, I mean endless because he's almost 18 now and we’re still working away – of other important skills, but we also had to slowly and methodically reacquaint him with foods that were not:
- bagels (cut only in half, never in quarters as that would be completely unacceptable);
- bananas (that still had that little black end intact once they were peeled (otherwise they’d get smashed to pulp instantly by his hand and thrown in our face);
- the vanilla flavored Minigos (which of course came in a four-pack with three pink flavors that he wouldn’t even consider eating; and
- McDonalds french fries (only the long ones, although he wasn’t picky as to whether they came from his plate or that of the astounded stranger at the table beside us.)
The “food program” started back then and continues to this day. It’s how Michael began liking pizza, yogurt and a vast number of new foods that we continue introducing, or in some cases, reintroducing to him. Starting with minute quantities, we gradually build up the size of the bites and the frequency with which we serve these foods until one of two things happen… he either starts tolerating the food and gradually even likes it – which is usually the case, or, he continues struggling with the new food and we respect his ongoing refusal as a genuine dislike and move on. (I think we should all be entitled to have a few foods that just gross us out.)
Obviously, when I target foods that we will be working on in the food program, my choices are based on health and ease of access to prevent us from getting stuck bagel-less with a starving kid as would so often happen back in the early days of Autism. So, you can see why candy has never been up there on my list of priorities. Every once in awhile I have offered candy to Michael, and each and every time – to the amazement of many – he has flatly refused. That is, until now…
Recently, one of Michael’s brand new therapists, Matt, so kindly bought Michael a little Chanukah present. Michael, who understands what a present is, excitedly opened the gift bag that was handed to him and pulled out a small box containing a chocolate letter “M”. I was in the room with Matt and Priscilla, one of our long-timers who was there training Matt. Priscilla knows Michael as well as I do and like me, was just waiting for Michael to discover that his gift was candy, and quickly toss it aside. We exchanged awkward glances with each other, both of us thinking, “Poor Matt. He’ll feel so awful when he discovers that Michael hates the gift he just bought for him.”
Just as I was getting ready to express my utmost gratitude to Matt, and go on and on about how “it’s the thought that counts,” I found myself stopping mid-sentence to observe my son. Michael saw what was in the box and didn’t toss it aside so fast. Instead, he decided to open the lid. Priscilla and I continued to watch in amazement as Michael took the milk chocolate letter out of the box, examine it and start gnawing on a corner. Before we knew it, he was taking sizeable bites! Poor Matt had no idea as to what was going on as Priscilla and I broke out into hysterical laughter.
When we could finally contain ourselves, I explained the situation to Matt and how extra-thrilled I was with his gift. It ended up being a very important reminder for us all to never close the door to new possibilities and opportunities when it comes to Michael and what he likes or dislikes or will or will not do. So I pass this little tip onto you… Remain open-minded; you never know when you’ll be in for a sweet surprise!
After writing my blog about pressure devices that help relieve stress and anxiety in some individuals on the Autism Spectrum, I became connected with an individual named James Teh. James is the founder of T.Ware, a Singapore-based company that has invented a jacket that simulates hugs.
From the outside, the T.Jacket really looks like any other light-weight coat. But don't be fooled. The jacket's interior features a high-tech vest that can be inflated to apply pressure of varying degrees to the shoulders, stomach and back. What's even more impressive is that these pressure adjustments are made with an Android smartphone. Teh is aiming to have iPad and iPhone apps released shortly as well.
"Feedback thus far has been extremely promising," states James of the success the T.Jacket has already experienced in Singapore. "We are now ready to introduce our product to the rest of the world and are welcoming feedback from parents, professionals and people with Autism themselves, if they are able. After all, who knows better about what will and will not work than our end-users?" he states.
Since my son is such a pressure-seeker, we are very excited to be one of the first product testers in North America. Our experiences and feedback however, aren't enough so I have offered to help James by recruiting more individuals to help him test out and offer feedback on this intriguing new invention.
So, if you have Autism and find that pressure helps alleviate your stress and anxiety, or if you are the parent, therapist or caregiver of a person on the Spectrum, this could be a one-of-a-kind opportunity to not only have a rare sneak-peak at an extremely innovative device, but to actually be part of a team that will together modify and improve this device, thereby improving the quality of life for countless people with Autism in the future.
To learn more about becoming a product tester for the T.Jacket, send an email to T.Ware at email@example.com, telling them a bit about the end-user you have in mind and how you feel you could make a valuable contribution to their product. As the T.Jacket is currently only Android-compatible, only those with Android devices can be considered as product testers during this testing phase.