This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.
This is the second post in a three-post series about vacationing with your child who has autism; read the first post here.
Tip # 4 Expect the Unexpected. Go with the Flow (as if we had a choice!)
As well-prepared as Neal was for his flight, once he got to the airport, he was so excited he couldn’t contain himself. At the airport, as we waited to board, Neal stared at the huge planes out the windows. He had great anticipation. I turned my head for a moment. I then heard the sound of an alarm. Neal had raced to the exit door and tried to open it so that he could go outside and be with the airplanes. He panics. People glared at him. Security raced over. “It’s okay sweetheart,” I told Neal, trying to comfort him. To the security guard and the concerned onlookers, what could I say? “He has autism! He just likes airplanes!”
I remember early on in our diagnosis becoming outraged at others for making what I thought were “stupid comments” about my child and his behavior. Too, I resented their judgment of how I handled unexpected situations based on Neal’s reactions to circumstances. Now I understand that such reactions come from ignorance (just plain lack of knowledge). I now try to use every occasion as an opportunity to educate and sensitize others to the special needs of my very special child and others like him.
TACA (Talk About Curing Autism Now) has cards that you can present to strangers to help them understand autism.
Tip #5 Call the airline (cruise line or hotel) in advance and let them know you are traveling with a child who has special needs.
Our choice to go with the flow continued throughout the flight. Once we boarded the plane, Neal remembered all that we had practiced (backpack under his chair, seatbelt snapped closed, and ears covered at take-off). Success! Until beverage service does its thing in the aisle, blocking the path to the bathroom in coach (where we are seated) and Neal indicates that he needs to go NOW. This we hadn’t practiced.
At my husband’s suggestion, Neal and I make our way forward to the first class restroom where the flight attendant recites the usual “first class passengers only” spiel. As I try to explain the situation of my son’s special needs, a man from first class, clearly able to overhear our conversation, heads into the bathroom, pushing ahead of Neal. “He’s going to have to wait like everyone else,” she prattles on. As I start arguing with her, Neal sees an opening. He darts towards the bathroom door. And yet another man jumps in front of the door with the cocky condescension of a first-class citizen. Neal tantrums. “Return to your seats,” demands the flight attendant. Neal grabs her eyeglasses off her face. She panics and calls for security. All this happens within twenty seconds. I’m losing it. My husband steps in. He calms me and quiets Neal enough to get him to wait behind the cart as it passes each seat. He then takes Neal to the bathroom. I return to my seat, fuming. If that stupid flight attendant hadn’t been so stuck on her rules, if that guy in first class hadn’t been so arrogant, none of this would have happened. How can people be so cruel?
Now I know to phone the airline in advance and tell them about my child’s special needs and apprise the flight attendants, that if something unusual presents, they need not be afraid. My child has the best intentions and he has autism. Things happen. I believe that people really do want to help families like ours if we tell them how by sensitizing them to our circumstance.
Airlines are becoming more accommodating. When I do the work beforehand, they offer comforts including letting us board early, being kind, patient, and attentive to Neal. I have found that, generally, fear of the unknown creates discomfort and anxiety which manifests in judgment or unkindness. The more we proudly travel with our children or go to movies, malls, or neighbors’ homes, the more they too will come to learn compassion, understanding, and non-judgment, just as we have.
Tip # 6 When traveling long distances prepare activities to keep your child engaged.
For older children, this might include computer games, DVDs, magazines, etc. When Neal was younger, I wrapped up little “gifts” in aluminum foil and let him unwrap them periodically on the trip. I remember going to a party supply store and buying bags of favors, little match box cars, airplanes, bubbles on a string, animated characters, plastic pretend food, etc. Unwrapping each package took up to three minutes. He would then take another three minutes to play with the toy car, spin the wheels, flicker it in front of his eyes, and then line the cars on the tray before he would get bored again. I also wrapped his favorite foods in little packages, a couple crackers here, a piece of string cheese there, three apple slices. Once we we’re in the air, he was intrigued and distracted by his little presents. Once in a while he ran up and down the aisle. I just ran with him. Life happens!
Check back later this week for the rest of Elaine’s tips and subscribe to the Autism Speaks Blog to make sure you don’t miss out!
This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.
Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.
I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.
With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.
On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”
Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”
When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.
So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University. (*Editor’s note: Autism Speaks typically uses person-first language. Alex prefers the term “autistic adult” to describe himself.)
After years of wondering why I was different from the other children, I was finally diagnosed with Asperger Syndrome at the age of nine. I tried to find other people like me on the Internet, but was disappointed at the resources available for connecting to other individuals with autism.
Consequently, I decided to create an online community for people with autism. I was living at my grandparents’ house at the time and they didn’t have internet access, so I had to ride my bike to the library just to work on developing the site. Since I started Wrong Planet, more than 37,000 people have registered as members.We get around two million page views per month.
I graduated from George Mason University with a bachelor’s degree in Film and Video Studies. My senior project was a documentary on autism. One thing I have always wanted to do is create a TV show about autism.
Autism Talk TV is a new online television show with the goal of spreading awareness and educating the public about autism. I created this television show because there really wasn’t anything like it in existence. Autism Talk TV will provide in-depth coverage of all issues relating to autism. Jack Robison (John Elder Robison’s son) and I attend autism conferences around the country and document people’s stories in crisp high-definition video, which I then edit into seven-to-10 minute segments.
I am continually impressed by the diversity of the autism community. Autism Talk TV gives a unique look into the varied lives of individuals related to autism and provides insight for those of us already living with autism.
Autism Speaks and WrongPlanet.net have graciously agreed to sponsor Autism Talk TV and we hope this partnership will help our show to reach as many people as possible.
Here is the latest episode of Autism Talk TV, which features an interview with Wired magazine writer Steve Silberman, who wrote a very popular article called “The Geek Syndrome,” which chronicled the rise of autism in Silicon Valley. I look forward to hearing your thoughts.
Check out Wrong Planet’s YouTube channel, where Autism Talk TV is hosted.
Autistic man dies in hot van in suburban Philly (Langhorne, Penn.)
Police say a 20-year-old autistic man died after being left in a hot van following a trip to a suburban Philadelphia theme park. Read more.
DHHS Blamed For Delay In Private Autism Funds (Omaha, Neb.)
A funding fight is brewing that could affect dozens of autistic children and their parents in Nebraska. The state’s Autism Action Partnership has pulled millions of dollars meant to help kick off a new program for critical care. Read more.
Children’s museum to host workshop on Asperger’s, autism (Suburban Journals)
The Children’s Illustrated Art Museum is hosting an educational and interactive workshop for the parents, professionals and teachers affected by the challenges of caring for a child with Asperger’s syndrome or autism. Read more.
Camp attendance triples for children with autism (Democrat and Chronicle)
Ten-year-old Steven Moore of Pittsford wasn’t sure archery was safe for children. Holding a bow and arrow, his voice grew louder as he said that pulling the bow string hurt and he didn’t think he could do it. Read more.
Columbia mom applies for Pepsi grant to support children with autism (Columbia, Miss.)
When Ella McPheeters was 3, she spoke her first word, “bubbles.” Before then, Ella was entirely nonverbal. At age 2, she was diagnosed with “pervasive development disorder, not otherwise specified,” a type of autism. It was only when she started therapy a year later that “her language completely blew up,” her mother, Hope McPheeters, said. Read more.
The 20th Anniversary of the Americans with Disabilities Act: A time to Celebrate and to Review our Commitment
This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.
My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine. My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.
As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.
Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009. While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.
The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks. Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.
Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans. I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.
The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage. Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org
This is a post by Autism Speaks’ Assistant Director of Science Communication and Special Projects Leanne Chukoskie, Ph.D.
On Friday, a short post with a link to a clinical trial led by Curemark was highlighted in e-Speaks and on Autism Speaks’ Facebook page. The post generated a many questions and comments, some of which could be addressed with more information about clinical trials in general.
Clinical trials are research tools for studying the health and well-being of people. Clinical trials are not always focused on treatment, but may include studies of better methods for diagnosis, screening or improving quality of life. A description of types of clinical trials is available at an informative website provided by the National Institutes of Health in the FAQ.
In addition to the different types of trials conducted, any clinical trial involving a new drug enters a phased series of tests to assess the safety and efficacy of the drug for a particular population. A Phase I clinical trial is small and establishes safety and appropriate dosage. In Phase II, the trial is expanded to include more subjects so a better estimate of effectiveness and safety can be established. Phase III trials can be conducted after preliminary evidence for the effectiveness and safety of the drug has been favorable. In this phase of study, the effectiveness of the treatment, any potential side effects of the treatment are closely monitored in a larger population. Also this phase typically includes a comparison of the treatment under study with other drugs available for the same condition. A Phase IV clinical trial is called “post-market” research because it is conducted after a drug has been made available for use in the general population. Phase IV studies typically include several thousand participants and help to refine aspects of the treatment’s best usage and ideal treatment candidate.
The Curemark study noted in Friday’s post is a Phase III treatment trial that aims to compare the effectiveness of a compound called CM-AT versus a placebo administered 3x per day for 90 days. This particular trial is “double-blind” meaning that neither the research participants nor the clinical staff administering the treatment know whether a subject is receiving the active compound or a placebo at the time the treatment is given. Double-blinded studies are believed to produce more objective results because the outcomes are not influenced by the subjects’ or clinicians’ expectations about the treatment. Treatment information will be revealed for all subjects when the blind is broken at the end of the study at which point an analysis of the effectiveness of the new treatment versus control can be compared.
The clinicaltrials.gov website lists 219 studies that result in a search for “autism.” A smaller number (110) are seeking volunteers. The treatments being assessed include behavioral therapies, different drug compounds, transcranial magnetic stimulation (TMS) and others from researchers all over the world. 12 of the 219 studies were sponsored by Autism Speaks and nine of those are actively recruiting. We encourage anyone interested in participating in research to seek more information about these studies.
Disabilities act anniversary, but there’s still long way to go (msnbc.com)
James Hill was fired from his job several years ago because of visible disfigurements from a fire that left him burnt over 85 percent of his body. Read more.
They just can’t stand it: The smallest things bother kids with sensory processing disorder, but skeptics scoff at the diagnosis (Kentucky.com)
It’s unbearable to wear clothing with tags. It’s impossible to use scissors, no matter how many times you try. All mushy or soft foods are unbearable – not because of the flavor, but the consistency. Read more.
Laughter lines (UK)
Comedy script writer Dean Wilkinson tells Lucy Richardson about his passion for children’s entertainment and why he’s creating the new Wombles on Teesside. Read more.
Katy is poised to take to the air (UK)
A teenager who suffers from cerebral palsy is preparing to leap from a plane to raise money for a north-east residential school. Read more.
Motorola accused of poisoning workers and their kids (Techeye.net)
Maker of the Razr phone, Motorola has been accused of poisoning its workers and their children. According to the Sun Times, a group of former Motorola workers and their children claimed toxic substances used to make Motorola products caused serious birth defects in at least 30 children born to workers employed by the company since the 1960s. More than 71 people have filed the suit in Cook County Circuit Court. Read more.
Making physical education fun for children with autism (The Brownsville Herald)
Betty always had lots of energy for the children in Room 103. She was the adapted physical education teacher for the special education program there. Betty came every Tuesday and Thursday, rarely missing even a day with these children. At the beginning of the year, she saw that the class had a couple of new students. Read more.
This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.
In June 2007, I graduated from high school. It was an amazing time for me. The majority of my classmates and I were off to great new beginnings. My new beginning began at Seton Hall University. “This is going to be great!” I thought to myself on many occasions before the first day of classes.
Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU. This is when the ball dropped for me.
During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen. Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.
In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?
At times, this led to many distractions that never would have occurred when I was younger. Sometimes I thought it was unfair. I had to advocate for my own single room in the dorms due to my social complications, extended time on tests for my reading comprehension, a note taker for my classes due to my lack of motor skills and many other complications. For someone trying to fit in it seemed like it was designed to make you stand out like a sore thumb. It even seemed as if as soon as I accomplished one of these tasks, the next semester would begin and it would start all over again for my new courses which required different accommodations.
When you add this to managing a full course load, trying to socialize with your fellow peers, along with being involved in extra-curricular activities, it can sometimes feels like you are drowning. I mean, “reasonable accommodations” are supposed to help level the playing field, not hinder you in any way. There isn’t a “reasonable accommodation” for that.
Although getting accommodations sometimes was daunting, I was still able to get by and will be going through the same process again with Disability Support Services come this September in my senior year at Seton Hall. For several semesters now I sit up front and tape most of my classes and download the recordings onto my computer, instead of utilizing a note taker. Never would have thought of that freshman year. For those reading who are younger and not yet in college, my advice is to sit in on as many IEP meetings as you can. Learn and ask as many questions as possible. The letters after your diagnosis don’t tell you if you need extended time or a note taker, but knowing if you are a visual or auditory learner may. Within this I would also strongly consider letting your parents be involved in some of your early decision making, especially when it includes freshman year accommodations. Independence is not grown over night and we all need that added voice sometimes to make sure we are level-headed and knowing exactly what we are getting ourselves into.
As many say early intervention is the key once first diagnosed, early intervention for those on the spectrum in college (and high school for that matter as well) is the key to ultimate success. What I’ve noticed about autism over the years is that it’s not a weakness unless you let it become one. Don’t let it hinder you. Let the advantages of who you are and what you have to offer be your ability to make it at the college level; just always know what your weaknesses are so you can be ready for whatever is to come next!
When the phone rings at Autism Speaks, you never know what to expect. It could be a parent, who has a child newly diagnosed with autism, searching for resources. The caller could planning her wedding; she and her husband want to make a donation in lieu of wedding favors.
Or it could be a gentleman who is auctioning off the world’s largest centrifuge (starting at $12 million) on eBay, who will donate 10% of the proceeds (over $1 million) to Autism Speaks, if it sells.
Upon relaying this story to my co-workers, my favorite response was, “I always wanted to go to space camp!” Yes, for that special someone out there who has an extra $12 million, it would be pretty cool to have your own space camp.
Check out the eBay auction page, which includes a description and some unbelievable photos – it is certainly one of the most interesting items I have ever seen, let alone one which will greatly benefit Autism Speaks if sold.
Join us in thanking the donor for his generosity – we hope it sells!