On June 15, Nick, Nicholas and Jonathan Zoccoli are going to hike through New Hampshire's White Mountains in a 26 mile Presidential Traverse to raise money for autism action through Age of Autism. Nick is uncle, and Jonathan and Nicky are cousins, to a terrific youngster with autism - whose Mom is a close friend of AoA's Kim Stagliano.
Nick Zoccoli, a longtime and generous supporter of AoA, has offered to dedicate the hike to his nephew and to donate proceeds raised to AoA.
From Section Hiker: "One of the great hikes in the White Mountains of New Hampshire is called a Presidential Traverse. It’s so-called because hikers climb all of the mountains in the Presidential Range of the White Mountains in one continuous hike that’s nearly 23 miles long with close to 9,000 feet of elevation gain."
CLICK HERE TO DONATE to team Zoccoli via PayPal - no account required. (Firefox & Chrome users may experience difficulty. Use Yellow donate button on right sidebar)
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Send a check payable to Age of Autism c/o Team Zoccoli 41 Northfield Lane, Berlin, CT 06037
Presidential Traverses are usually hiked from north to south, climbing the following sequence of peaks, in order to get the greatest elevation gains over with early on, with hikers starting before dawn and often hiking into the night.
We've finally left April and its namby pamby feel good (not that we don't like feel good stories at AofA) blue lit "awareness" behind. It's fitting that May first was MAY DAY - the call of distress. Here's a story from Generation Rescue, our sponsor, and provider of the Rescue Family Grant. This grant program puts dollars into familes' hands and medical treatment. And it is quietly changing lives for the better. Thank you to Jenny McCarthy, Candace MacDonald and the entire GR team. You can meet Jenny and bask in the GenRescue Lounge at the Autism One Generation Rescue conference in Chicago later this month. The cost is just $50 for a five day conference if you register by May 6.
Listen to what a Mom said about what the grant has done for her son:
Less than a month into starting biomedical treatment, the Generation Rescue grant recipients are making amazing progress!
"P's teachers were thrilled today when I came to pick him up from school. They said it was the best day he's had in a long time. P's expressive and receptive language is just taking off. He is able to express anything he wants. We're over the moon! Seeing these positive changes makes us so grateful for this opportunity."
-V, Mom to P
To find out more about the Generation Rescue Family Grant program and to apply to start treatment, please visit Gen Rescue.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
By Anne Dachel
After reading the Thinking Moms’ Revolution, I know one thing: this is our book. The twenty-three moms and one dad included in TMR tell all our stories to some degree. And they are THINKING. They question, they research, they dispute, and they discover. The title is a perfect one for what these people do.
As we all know, no two autistic children are exactly alike and neither are their parents’ experiences. There are however, lots of common threads revealed in the book. There are the accounts of the bubbling excitement and great expectations parents had when their children were born and the disbelief and fear in the face of regression and developmental stops. There are the doctors who failed to understand what autism is doing to our children or to provide real help to parents.
TMR is also about hope and success. It’s moms who struck out on their own to find answers and did it. It was the Internet that was their lifeline. There they found resources and support groups like the Thinking Moms, the National Autism Association, Age of Autism, and Talk About Curing Autism. Most of all, they made connections with other parents that empowered and informed them. The computer provided the education they needed. Moms learned about homeopathy, organic food, supplements and special diets.
“Homeopathy brought speech, receptive language, cognitive gains and increased awareness.”
Thank you to a reader who sent us this poem for World Autism Day. The photo is my daughter's hand from one of the several injuries she received during her months of abuse while riding the bus. Black and blue should be the colors of today - as so many of our loved ones face danger because of their autism. K
Color me blue
I’m aware of your pain
That your child was harmed
By a merciless bane
Color me blue
I’m aware of their woe
That they face hardships
Which others don’t know
Color me blue
I’m aware of turned heads
Who should be helping
But who hurt instead
Color me blue
And a tear for you
My heart goes out
Color me blue
Managing Editor's Note: For information on wandering and an action tool kit called The Big Red Box, please visit National Autism Association's AWAARE program.
By Mark Bucknam
It was Tuesday, April 25, 2011, a beautiful warm spring morning in Potomac, Maryland, a suburb of Washington DC. At John’s house, a radio alarm clock sounded at 5:45 a.m., softly delivering the news of the day, growing gradually louder. John’s dad quickly silenced it, wanting to allow his wife another 15 minutes of sleep before her alarm signaled the start of her day. Raising John, a moderately autistic adolescent, required a team effort by his parents. John’s dad awoke first to prepare vitamin and dietary supplements that doctors believed John needed to compensate for deficits in his metabolism—deficits common among autistic children. Mom would follow soon after, to make sure the kids were properly dressed and fed before getting on their respective school buses.
A few weeks from his 15th birthday, John had the functional intelligence of a boy half his age, but none of the emotional intelligence. That was autism…or at least the manifestation of autism in John. Every autistic person is different, though many share similar intellectual deficiencies, quirky behaviors, and most tellingly, social deficits. They lack interpersonal skills.
Like his older sister, John had bright blue eyes and red hair, though his was cut fairly short, hers was long and curly. John was 5’8” tall, trim and solid at 140 pounds. He usually slept well, but was full of nervous energy during his waking hours.
It had not been a good night. John had barged into his parent’s bedroom at 2:30 in the morning, fully awake. His groggy parents teamed up to coax and cajole him back to his own bed. His mom stayed with him a while, until he settled down and seemed ready to go back to sleep, before she headed back to her own bed. John’s dad ventured downstairs to the first floor to check the lock on the refrigerator and the lock on the door from the den to the garage to make sure that they were locked —these were the two locked doors that the family used most often and most likely to be accidentally left unlocked.
For John’s safety, everything had to be locked, either to keep him out of it—like the refrigerator, the kitchen pantry, the basement, and the guest bedroom—or to keep him from getting out of the house through it—like the front door, the patio doors, and the door from the den to the garage. The locks were identical, excepting for the one on the front door. They were all small combination locks with three rotary wheels containing numbers from 0-9 used to set the combination. All of the locks were set for the same combination—a number that marked the month and day of John’s dad’s birthday.
Downstairs early that Tuesday morning, John’s dad turned on the coffeemaker and a small TV, which quietly detailed world news. He measured out John’s morning supplements – making sure not to confuse the morning batch of vitamins with those John would get in the afternoon, or the ones he would take just before bedtime. By 6:00 a.m., John’s dad climbed back up the stairs and quietly slipped into John’s bedroom.
John’s bed was empty.
Congrats to Daniella, our winner!
Thank you to Melissa at The Puzzling Piece for offering us a beautiful heart necklace for a lucky AofA reader. Melissa started the "iPad Challenge" program for families to win an iPad in an easy sales contest. It's almost Autism Action Month - a great time to join the Challenge.
My husband and devoted father to our two son comes from a family of educators.
It was only logical that our son continue his secondary education as an
extension of his student experience that started when he was 3 1/2 years old.
Like a long rising phoenix, this young man had paid his dues and deserved a
college experience, Right?
Wrong. Apparently we were dead-assed wrong and the minutes scribed during our brief meeting will only relay our ignorance. The road we travel just got infinitely longer supporting our now adult son with ASD.
The gate-keeper required him to pass a 3 hour reading and writing assessment, unsupported, with a timer looming in the corner. For art classes - even labs. Awesome. Didn't we cover our Achilles heel well enough over the 15 years of education, therapies, assessments, awards, grades, passing federal standardized testing, his web-site, posted online art submissions all while earning exceptional honors? Nope.
Losing eye contact. Right. About. Now.
We, the parents, knew exactly what was happening. Our son was being deliberately set up to fail. This was not acceptable, on any level, with any student. On the way home, the conversation in the car yielded a new plan. Anxiety was replaced with reassurance that he would NEVER again have to take class or be assessed just to learn the skills he needs to use equipment and techniques to create his own brand of graphic arts.
Artists with Autism, Earn Extra Holiday Shopping Money
Beacon Day School,
supporting programs for adults and microenterprise, would like to obtain more
artwork by individuals with autism to beautify the environment for students.
Beacon Day School features many paintings by award-winning artist Trent Altman,
whose mother, Dr. Jackie Marquette, recently came on board as AutismOne art
Between December 5th and December 15th, individuals with autism or their caregivers are invited to email pdf or jpg images of their art that is valued between $150-$500 to email@example.com.
Please include the artist's name, website address, mailing address, phone number, and dimensions and price of each piece submitted by December 15th (also send a second email with no attachment that lets Beacon know of your submittal, just in case the email with an attachment bounces). Three pieces will be selected, which, after verification of availability to ship to Beacon by January 11th, will be announced on the Beacon Day School website's Focus on Art tab, www.beacondayschool.com/artists.html, on December 18th. A check will be mailed from Beacon to the three selected artists December 19th (shipping costs are the responsibility of the artist; please ship insured). Selected pieces will be depicted on the Beacon website and displayed at the AutismOne conference in May 2013.
Falling, written by Deanna Jent, is a play now running in New York, off Broadway. Autism, like many difficult topics in America, is often sanitized to the point of saccharine caricature. Not Falling, which brings the audience into a home with a severely autistic man - an 18 year old boy. Perhaps it's your home? (Photo Julia Murney and Daniel Everidge star in 'Falling,' now playing off-Broadway. / AP/David Gersten & Associates)Here's part of the review from The Asbury Park Press by Bill Canacci: Sometimes we need more than statistics to help us understand. That is likely why Deanna Jent wrote “Falling,” a powerful new play about how a couple copes with their 18-year-old autistic son.The numbers tell one side of the story: One in 88 children have been identified with an autism spectrum disorder. For boys, it’s 1 in 54.But in 75 minutes, Jent gives audiences a glimpse of what families touched by autism likely have to go through every day.
This sounds like a Lifetime movie, but don't be fooled. "Falling," which has practically crept into town from the Mustard Seed Theatre in St. Louis, is an unflinching and unsanitized drama about family life with a severely autistic 18-year-old boy.
Directed with enormous sensitivity and edge by Lori Adams, Deanna Jent's exhausting, strangely exhilarating new play deserves to be far more than a destination for autism fundraising benefits and people with personal investment in that isolating world.
Note: Last year we ran a post about the first showing of The Lion King on Broadway - a special performance to invite people with autism to enjoy the theatre. A second show ran last week - and below is the POV of one of the actors from Broadway World.com. While seeking treatments and answers for autism - we have to live and enjoy life and allow our kids to experience the world around them. After all, it's a hard knock life for us." Oops, wrong show. ;) Thank you to The Lion King production.
Last fall, Theatre Development Fund (TDF) piloted the new program, Autism Theatre Initiative, as part of TDF’s Accessibility Programs (TAP), to make theatre accessible to children and adults on the autism spectrum, and their families. They presented the first-ever autism-friendly performance of a Broadway show at Disney’s landmark The Lion King on October 2, 2011 and followed that up with an autism-friendly performance of Disney and Cameron Mackintosh’s Mary Poppins on April 29, 2012.
On September 30, the cast of The Lion King took part in another autism-friendly performance, and Rod Thomas, an actor in the show, wrote about the experience from his perspective. The full piece is as follows:
"The Lion King" is a remarkable show for so many different reasons, but I want to share a small footnote of its history with you.
I remember seeing "The Lion King" for the first time on Broadway in 1999 in the New Amsterdam Theater and being completely captivated. I remember seeing it in Des Moines, IA on the day I joined the National Tour in 2006. I've seen it countless times in cities across the country and beyond - from Honolulu, Hawaii where it was received with an incredible amount of love and joy to Mexico City in an arena so large they simulcast it on two large screens above the stage. It is amazing how much audiences still go wild for it every night almost 15 years later.
9 am Pacific / 12 noon Eastern
A BEACON OF LIGHT AND HOPE FOR LIFE CARE PLANNING: Dr. Mary Joann Lang and Edward Miguel, COO, interview Michael Sanders, MBA, and Lisa Rudley, MBA
What do you need to do to ensure sufficient resources for your ASD child’s future during adulthood? Dr. Mary Joann Lang, founder, and Edward Miguel, chief operating officer, of Beacon Day School interview Michael Sanders, MBA, and Lisa Rudley, MBA, about the vital topic of life care planning.
Polly Tommey, a mother from London with a son with autism and Founder of The Autism Trust will be opening Polly’s Place in Sunninghill, Ascot as the charity’s first retail, training and administrative facility on Friday 5th October 2012.
Polly Tommey set up The Autism Trust in 2006 to support the creation of a better future with real purpose for children everywhere with autism as her son Billy, approached his teenage years with very uncertain prospects for his own future.
Polly’s Place is an exciting new shop that has been developed as a social enterprise to help people with autism lead more fulfilling and rewarding lives. The retail training shop will provide both customer-‐facing and administrative experiences whilst showcasing artistic talents of people with Autism Spectrum Disorder (ASD).
Many vulnerable young adults with autism live at home, so Polly’s Place will promote home working and individual creativity as a recognisable and important contributor to the local economies of the UK encouraging high quality homemade/handmade products created through artisan skill to be celebrated.
At the very centre of all activities undertaken by The Autism Trust is the concept of “Wellbeing”. It is the core “mantra” of the organisation, the wellbeing of any person involved with the Trust is key. It is about identifying when a person with Autism is becoming stressed and giving them “time-‐out or a calm down break”. It is also about providing a range of strategies that will help the individual learn to cope with difficult situations.
A parallel programme: ‘AH-‐HA’ (Autistic Helping Hands in Ascot), will also be started by The Autism Trust in October to provide services for the local community. Initial projects will include garden tidying and maintenance to members of the local elderly at-‐home population.
“She’ll have a good life,” she said, reassuring me that everything was going to be okay.
The emphasis was on the good, not in a way that stressed “awesome” “great” or “fantastic”, but in a way that expressed “satisfactory”, “acceptable”, or “decent”.
It was meant to be helpful, I know. It was meant to remind me that things could be so much worse. It was meant to make me feel better.
It didn’t. In fact, it just made me angry…and then sad.
When I look back on my life thus far, I’m relieved to find that my feelings about it are overwhelmingly those of joy and gratitude. I have had a great life, I believe. In fact, I feel like one of the most blessed people on the planet. I really mean that.
It’s only when I really start to think about the tragedy that befell my daughter and our family that I begin to question it.
My child was poisoned. Her brain and body irrevocably damaged. Her life’s potential stolen. Her suffering and experience denied by those who caused it, the same people needed to fix it. Betrayed by our country and our media. Our marriage fragmented. Our lives cracked in half. The pain coming this close to breaking us. Breaking me.
Great life? Really?
And yet, the answer to that is still the same, beyond any shadow of a doubt. Yes, I’ve had a great life. One of the greatest I know.
For I have lived in Spain and danced in the fountains of Madrid and on the shores of Ibiza at midnight.
I have celebrated in Wembley Stadium with over 100,000 people singing in unison…including Prince William.
I have completed a marathon…in Alaska…while pregnant. And I swear I’m not making that up.
I have married and stayed married to the most perfect man on the planet for me, twenty years together this November, teenagers when we met.
I have excelled in academics and have never really had to work hard for anything…until marriage…and then Autism…and then marriage again.
I have the most loving, supporting, amazing, and hilarious family anyone could ever ask for.
I have had the same best friends since I was 7 years old, and we are still as close, if not closer, than we ever were.
I live in Chicago.
I have been able to use my favorite creative outlet, writing, to actually make a difference.
I have marched on Washington for what I believe in. Thrice.
I have stroked my children’s hair while I have rocked them to sleep, breathed in the scent of them as newborns just placed in my arms, and in those moments, have repeatedly experienced true, unconditional love.
I have learned what it means to be willing to die for someone if it would mean an end to their suffering, no questions asked.
I’ve had the privilege of teaching at two of the best schools in the nation.
I’ve been healthy and active, running and exercising my whole life without injury or difficulty.
I’ve learned I’m stronger, smarter, and more powerful than I ever could have imagined. And I’ve been really frightened by the responsibility that brings.
I have seen my favorite band in concert five times, and once, I even got chosen from a crowd of tens of thousands of people to sit in the front row while they shot a video.
I have been honored by Oprah Winfrey as one of America’s best teachers, showered in her “Favorite Things” on television (only to come home hours later and receive a diagnosis that would change my life forever).
And most incredible…she recovered.
Early in the summer, I received a letter notifying me that my school district was honoring me for ‘My Career Dreams’ poster during the June district meeting. My entry for the National Career Development Poster Contest had placed first in state, and third place nationally. The June meeting date, as well as the July date, fell during my Precollege session at Ringling College of Art and Design. Thankfully, the district rescheduled me for August on the last day of summer vacation.
I spent that day organizing my supplies for the first day of school, and finally getting my learner’s permit. This is my senior year. My older brother Anthony has low verbal autism, and aged out of special education services June 2012, and is now home full time with my mom. Anthony is prone to very loud echolalia which he can’t control. Family events requiring a respectful silence are handled by one parent staying home with Anthony, and the other parent attending the event. My father’s work schedule had interfered with many of my art recognitions over the years. My mother did not want him to miss another opportunity, so my dad accompanied me and my mother stayed home with Anthony.
When my father and I arrived at the district auditorium, we were told that I was also being recognized for my senior project work, which led to my becoming a contributing editor for Age of Autism. This came as a complete surprise. We were prepared for my art acknowledgment, but had no idea there would be any recognition for Age of Autism. My father was very proud they wanted to extend dual recognition. However, it was emotionally bittersweet to have one child being recognized for accomplishments inspired by the other more vulnerable one. We both couldn’t help but wonder what Anthony’s accomplishments might have been if autism hadn’t come to call. Even our happy moments have a little pain underneath.
In attendance was Melissa Rawl, principal of Lexington High School, and Ken Lake, the principal of Lexington Technology Center. The Board of Trustees welcomed everyone, and said the meeting would be brief because the school year was starting the next day. They handed out a newsletter entitled “Proof Positive” which honors students and teachers receiving state, national, and international awards. I was categorized under “Visual Arts Awards”.
AutismOne: A Conversation of Hope
Noon Eastern, 9 am Pacific
A BEACON OF LIGHT FOR YOUR CHILD, with Dr. Mary Joann Lang and Edward Miguel
We hear so many stories from around the country of special ed programs not serving children well or – worse – putting children in danger. Few things give parents as much hope as a good school program with caring staff members who treat students with kindness and respect. Dr. Mary Joann Lang, founder, and Edward Miguel, chief operating officer, of Beacon Day School talk about the current model and future hopes for Beacon programs, including new technology, integrative education, support staff for children with medical issues, transitional needs, and the looming national crisis in adult care for individuals with autism. Dr. Lang will particularly address adult issues and explore thoughts for moving forward into a future with hope. Please visit www.beacondayschool.com.
By Wendy Frye
This spring, our son graduated from high school.
Born well and happy, he like many of the children you read about, regressed back into himself after his early rounds of routine vaccinations. He became very sick, unhappy and while meeting his major milestones on time, lost his ability to communicate with us using language.
"He's a boy, they are late talkers." "Wait until he is three years old, it will come." Eventually, after many years of expert opinion and conjecture, we were handed a diagnosis of Autistic Spectrum Disorder. The diagnosis delivered complete with long stares and a diatribe of advice which included an institution at the end of our 18 years of parenting.
Our family dynamic never "changed" or "wavered" from the original plan. We vowed to do anything and everything to help this child, my first born, regain what was so bullishly robbed from him including his health, happiness and a healthy future. This happened over 15 years ago - when 1 in 10,000 won this Autism lottery. Always (always, always!) holding steadfast and headstrong into the winds of what many families are dealing with now, we are emerging at another side of the story. He's not 100 percent, but he is the best version of himself, right here, right now.
This spring, our son graduated from high school.
To accomplish his graduation our son endured more challenges, trials and tribulations than is room to list here. He came from the back of the pack, shackled to an iron rod, his tongue tied up in poor health and a system that let him down. A true dark horse is what my son is.
How did he do it? The day after diagnosis we started building a "launchpad" if you will. A port in the storm where he could find his health, gain his voice, and ultimately blast off to leave his fingerprint on this world. Biological interventions coupled with sensory based therapies EVERY SINGLE DAY became our families norm. He did it all. As they say, you can lead a horse to water but you can't make them drink. Well, he drank it in, took responsibility to grow into the fine young man he is today.
This spring, our son graduated from high school.
This young man is a self-declared artist. On his own accord he has studied art history, memorized styles and artists to go on and create fractal, abstract and downright provocative compositions with his own hand. He names the pieces so thoughtfully, giving us insight about what it is like to be Autistic. He proclaims he is an artist with Autism. And knowing this world so desperately wants to know more about how he feels and thinks, it has become his pleasure to offer his works for sale, with proceeds going back to the fine organizations like Age of Autism.
This spring, our son graduated from high school.
Autism on the Seas (AotS), a niche travel company catering to vacationing families with special needs, and Skyeward Bound Ranch (SBR), a non-profit charity dedicated to providing social and recreational interaction for specially challenged youth, jointly announced today the tri-state kickoff of the “I Need a Special Vacation” Essay Contest in Alabama, Georgia and Mississippi. The essay winner, as well as the winner’s non-profit autism support group of choice each receive a special needs cruise or land resort vacation with AotS.
“Now entering our third regional contest market, we are all pumped up on the joy and excitement this initiative has created,” says Dalace-Skye Duvall, Founder and President of Skyeward Bound Ranch. What’s really wonderful about this whole campaign is the fact that we now have a growing list of terrific deserving families that we may be able to grant Autism on the Seas vacations to.”
“We want to congratulate our recent Florida region winner, Candy Rhodes, and her family. Rhodes selected the Peace By Piece Learning Center in Fort Myers as her non-profit autism advocacy group of choice to receive a cruise donation,” says Mike Sobbell, founder and owner of Autism on the Seas. We’re excited and hope that this gift will help them to raise funds for their organization.”
The unique partnership with Skyeward Bound Ranch has made it possible to offer the Autism community a chance to win a special needs vacation or receive a grant that will enable them to take a real vacation with Autism on the Seas and other like families, in an environment that is comfortable, accommodating, accepting and fun!”
“I Need a Special Vacation” Essay Contest Kicks Off in Alabama, Georgia and Mississippi
Over the next year, AotS will run in-market contests with participating local autism advocacy groups, as well as local chapters of national organizations, such as Autism Speaks and the National Autism Association. Families interested in entering the contest will be asked to write a 250-word essay on why they need a special vacation.
The winner will receive a paid cruise or land resort vacation with AotS. Additionally, the non-profit autism advocacy organization named on the entry form by the winner will also receive a cruise. The organization may use the cruise to raise funds or however they wish. Runner-up prizes will also be included.
Contest rules and submission deadlines will be listed on the AotS website, www.AutismontheSeas.com. As the promotion is rolled out in each market, AotS will make announcements and post updates to their website. AotS is accepting entries from Alabama, Georgia and Mississippi contestants starting on July 26th. The submission deadline is August 22nd; winning family and organization will be selected and notified by August 31st, 2012.
Esteemed Panel of Contest Judges
This Tuesday, noon Eastern, on the VoiceAmerica Health and Wellness Channel www.health.voiceamerica.com
AutismOne: A Conversation of Hope
Extreme Sports Camp, with Sally Bernard
Autism enrichment pioneer, Sally Bernard, is joined by her staff at Extreme Sports Camp for this on location interview by Betsy Hicks, whose son is attending the camp in Aspen, Colorado. The camp focuses on teaching both children and adults with autism, outdoor sports where they are actively engaged so that the attendees learn skills rather then passively participating. This year kicks off their new adult program which additionally teaches employment skills making sure to challenge participants appropriately.
An Independent Me (AIM), a full-time residence and summer camp for adults (18 and older) with Autism Spectrum Disorder (ASD) in Round Rock celebrates its grand opening on Saturday, June 30th from 4-8 p.m. Interested parents and the local community are encouraged to attend to learn about day camp opportunities and full-time residence at AIM.
AIM kicked off its first session on June 11, 2012 and with seven campers and one resident in attendance, the first two weeks have been a major success. Adults at AIM have learned how to build a picnic table from wood planks, care for livestock on the ranch-style property, sew, and plant the seeds for an on-site vegetable garden. The grand opening is open to the public and will include bar-b-que, horseback riding, a petting zoo, games, and a silent auction featuring camper-created art and picnic tables.
AIM exceeds standard expectations of group homes for individuals with development disabilities, providing:
Last week, one animal-loving camper shadowed a veterinary technician for two days at nearby Block House Creek Animal Hospital. Angela Day, AIM founder and mother to son with autism beams with pride, "In developing An Independent Me, my heart is full as I spend time with the smiling faces of these innocent souls, teaching them to become as independent as possible, and providing rewarding and individually challenging activities for them on a daily basis."
By Jennifer Flinton
My 10-year-old autistic son was dis-enrolled from the adaptive summer day camp at our local recreation center today. This was a camp specifically designed for special needs children; there were actually several kids my son knew from school in the very same camp. I’m starting to detect an emerging trend here. “Special needs” doesn’t necessarily apply to my son, who is totally non-verbal and is on the more severe end of the autism spectrum.
This has happened before. I enroll my son in what seems, on paper, to be an ideal program for him – small staff-to-child ratio, lots of activities to keep him occupied, and most importantly, staff trained to understand and work with special kiddos like mine. Then, when my son and I go for our first day, we quickly realize that they really didn’t mean kids like him, with often severe outbursts of behavior, self-injurious behavior, and aggression. They want compliant kids; those kids with special needs who might just be a little physically slower or cognitively slightly impaired. Those are the kids who look good on the brochure, not my kid who’s red-faced and whose nose is running snot because he’s been screaming for the past hour.
The first experience like this was with a TOPS Soccer group in our hometown of Olympia, WA. The “cute,” compliant special needs children loved the indoor gym and were eager to participate in the group warm-up activities. My son covered his ears due to the echoes of the gym, and wanted nothing more than to leave – he kept crying and tugging at me to go. We gave up after 4 or 5 practices.
The next experience was with a social skills group for ASD children. The first year we were here in the Austin, TX area, my son did well with this group, so I was the first to sign him up the following year. I found out a week before the group was scheduled to start (and once it was too late to find another summer activity for him because they were all long since full) that the agency had decided to have a higher functioning social skills group, where they could take community field trips and such, so my lower-functioning son could not participate. Sorry.
A few weeks after that, my son’s speech therapist gave us an ultimatum…either my son’s aggressive outbursts had to drastically improve within two weeks, or he could no longer receive speech services from her. Considering we’d been doing almost nothing but trying to stop his behavioral outbursts for years, this was not a likely possibility. I was a bit surprised because the head of that speech clinic was a BCBA herself. Surely, if anyone should be able to work with behaviorally involved ASD children, it was her and her staff. So, we didn’t bother to wait the two weeks – we stopped going on the spot.
We decided to try Miracle League baseball – a baseball team specifically designed for special needs children. They assigned a one-on-one volunteer to every child, which in theory sounded perfect for my son. Well, it turned out that these volunteers were middle and high school students who really didn’t know how to handle more severe behaviors like my son has. Also, it was disappointing to them not to get the emotional feedback from my son and other children like him – if they were going to volunteer, they wanted to feel like they were having a positive impact on the children. Several families with more severely affected children were asked not to participate any longer.
I am sending you these boots to symbolize the fact that my son Colin will never be a third generation NYC Firefighter, Colin like 1.5 million other American children and young adults has Autism. Our children are getting older and the Autism debate is endless, I just left my sons school and had to step around a student having a “difficult” time sprawled out on the floor, we parents are heartbroken and angry that our beautiful kids are so tormented, they have no future, and we anguish over what will become of them when we are no longer around to care for them.
We need a cure, and we need your help, it won’t cost you a dime, just a few passionate words. We need you to be brave like my son and bold like President Kennedy when in dramatic and unforgettable fashion he challenged the scientific community of the day to put a man on the moon, his words were powerful and inspired our nation to one of the greatest achievements in human history. Our Autistic sons and daughters need you to push the scientific community of today the same way, inspire and challenge them to find a cure for Autism by the end of this decade. We need a champion and from where I’m standing saving 1.5 million lives plus future generations is a far greater achievement than putting a man on the moon.
Ask the X Prize foundation to set up a $10 million prize for our cure, if they are not interested we can raise the money ourselves through Autism Speaks the “A” prize, (Managing Editor's Note: Tim and I had a good laugh over that suggestion but maybe if the President asks, they'll "listen" so to speak) there are so many of us it will only be a few bucks a head. Attached is a check for the first $100.00 for the fund, and I will mortgage my house and liquidate every asset we have if needed.
The reason we need to go this route is simple, nothing has changed in the last 10 years, millions have been wasted on the same gene studies, and we are no closer to a cure. The CDC has stood by and watched the numbers of new cases grow with horrifying callousness. We need to get government and big pharma out of the way and put a bounty on Autism's head. I often think about the guys who came up with the HIV protocol they were denied grants and worked out of a garage in Jersey, these are the kind of people who will find our cure.
Sam was about three and half. He very much struggled with speaking and communication. It was a truly difficult and trying time for all of us. The ASD diagnosis was still so new to us. Out hearts ached for our son, for the unknown, for what might become of him. We were terrified. Sam was frustrated with no means to connect to others, to have his wants and needs known. The world had become a strange and foreign place for him. Where all things had once been right with the world, now nothing was.
We were outside. I was messing in my flower beds, something I love to do. As Sam and I walked alongside our home, Sam paused. He bent over and plucked a wild violet, from amongst the grassy abyss. He then turned to me and said, "fower," as he handed it to me. I recall being so taken aback that I had to stop and really think about what had occurred. He had so few words at that time. The vast majority of his words had long ago disappeared. We were working feverishly to try and gain them back. He was utterly disengaged with his environment, including us, his parents. He had long ago stopped responding to even the sound of his own name. We had no way of knowing if we might possibly succeed in helping him to regain those skills now lost to autism.
I was in awe......I know my heart most certainly skipped a beat. I may have actually stopped breathing momentarily. I cannot begin to accurately describe the pure joy that overcame me. Not only did Sam engage with me by giving me a "fower" from a weed patch, but he also called it by name, "fower." It still brings tears to my eyes the same way it did that Mother's Day so many years ago. It still fills my heart to overflowing. There was hope! There IS hope!!
To this day, I don't pull wild violets out of my otherwise meticulously manicured flower beds. They shall ne'er again be simply another annoyance to me. What was once readily thought of as merely an eyesore had now become a genuine treasure. They make me smile and give me great pleasure. They fill my heart as I trust there are better days ahead.......They symbolize HOPE! ♥
I still have that beautiful violet "fower" pressed inside my grandmother's Bible. And, I still very much have hope for my son and his future. Believe.........
Sam's MAMA (Mom on A Mission for Autism)
This extraordinary setting in Cedar Park, Texas includes an ranch house on 4.5 acres of pastureland plus a horse barn – a fenced rural retreat in the middle of this booming Austin-area subdivision offering opportunities from high-touch to high-tech. Campers can interact with horses, sheep and chickens and cultivate gardens; take art and video classes on site; and participate in camper-guided tours of YouTube, Facebook, and the Web. Participants can also elect to take classes at the nearby Austin Community College (ACC) campus. AIM will work with Texas Department of Assistive and Rehabilitative Services (DARS) as well as neighborhood restaurants and other businesses to provide job opportunities for campers. Transportation to and from school and work will be provided by the camp.
Angela Day, AIM Board President, says “This is an extraordinary community. Vocational, educational, and life skills training is designed specifically for the needs of those on the entire ASD spectrum, from non-verbal autism to high-functioning Aspergers. We are excited about our exceptional staff, who will make sure each resident and family member who walks through our doors feels safe and secure, and sees a bright future.”
My best friend is obsessed with tragic mom blogs. She spends way too much time in her work-from-home day reading sad stories about moms whose kids have terminal diseases, rare genetic conditions, and a host of other maladies that are really quite heartbreaking. I’m not quite sure what pulls her to these narratives— it could be a can’t-look-away-from-flaming-wreckage voyeurism, or it could be from a sense of there-but-for-the-grace-of-god-go-I reflection on her own happy, healthy kids, or it could be something else. Even she’s not sure, but she keeps reading.
When my son—who’s only 4 days younger than her oldest son— was diagnosed with severe autism last year, she expanded her tragic-mom-blog reading to encompass autism and other delays.
Recently, she sent me a link to a heavy-heavy conversation between parents of kids with special needs. She warned me that it was “VERY heart wrenching (think Tragic Mom Blog level CUBED) and while it opens a window of perspective for me - it might flood you with emotion (good & bad)....”
And so, I went here at once:
On this page parents of kids with disabilities confess the deep, dark thoughts that literally that keep them up at night. These parents are raw, candid, and utterly grief-stricken. Since I’ve been there before and since I still get daily grief bursts for the life-my-son-could-have-had, I read on, and on, and on.
As I read two themes emerged:
1. My disabled child has ruined my life
2. I wish he/she was dead
Want to know why these comments are, as my best friend warned me, “tragic mom blog CUBED”?
Simple: moms of kids with terminal diseases are desperate to have their kids pull through, to live, and to grow old. They want life for their children.
The opposite is true of the parents with disabled kids who have written on this website. According to these parents: the best we can hope for our disabled kids is an early death.
Facebook rumors circulated that the café was “demonic,” but that didn’t stop an overflow crowd from enjoying “Give Autism A Chance” at family-friendly Spider House in the keep-it-weird city of Austin, Texas. Our teens fit right in at this funky eclectic coffee house. The goal was to demonstrate that young adults with Autism Spectrum Disorders can contribute to the workforce and give back to society. And in this laid-back campus refuge, they did. Patrons only joked with him when my son, Ben, swiped a finger through the whipped cream on somebody’s waffle cake.
How did it go? Lainey Melnick writes, “Thank you all for a delightful event. My son, Daniel Freeman, had a wonderful time and is really hoping it leads to some new opportunities.” And maybe now he’ll get them. Jennifer Kaut, Autism Employment Specialist with Texas Rehabilitative Services (DARS), was there to give Ben and other job-seeking young adults a second look. “As an ASD mom,” she said, “my goal is to revolutionize the transition to jobs statewide.”
Here’s how Leslie Phillips, Houston Chronicle blogger, ASD mom, and Canary Party supporter experienced the event: It was a brilliant weekend in Austin for the US launch of Give Autism a Chance. Two hard-working dedicated teens pulled off the event with help from some parent advocates, capable young adults with autism, and visitors from UK including Autism Trust founder Polly Tommey. Dan Burns, board chair of Autism Trust USA, was also on hand with his wife Sue, and adult son Ben. (Read more at Leslie's Chron blog.)
Here’s video of Ben clearing tables:
Here’s local video news coverage coverage of “Give Autism a Chance.” (Note the video is on FB and might not be accessible to all readers.)
The surprise for me was how much we enjoyed our kids. In a restaurant. The surprise for Ben’s mom: “I was astonished at how much he could do.”
Dan E. Burns, Ph.D., is Adult Issues Liaison for AutismOne and the author of Saving Ben: A Father's Story of Autism. Burns is developing the Autism Trust USA, modeled on The Autism Trust (U.K.) and focused on the creation of new campus communities where adults with autism can work, live and improve their skills and talents in a creative and supportive environment.
What began as a collective journey
Of stories across the globe
From Autism to recovery, and with whatever happens in between
A tight-knit group of parents were drawn to support each other
Traveling the Autism journey
While learning, identifying, laughing, crying, celebrating – experiencing a full spectrum of life and emotions
Creating a Revolution along the way
Not for the weak
Always with hope in sight
We walk together
And invite you to join us to do the same.
At almost 1,000 fans strong in less than two weeks of being on the web, a group of dedicated Moms (and token Dad) have joined the autism blogosphere.
The Thinking Moms’ Revolution is the voice of twenty-five contributors. They are feeding the cause with inspiring, interesting and entertaining blog posts and Facebook conversations.
TMR would like to extend the invitation to you to connect with them. You can see the blog at www.thinkingmomsrevolution.com, tweet with the group @thinkingmomsrev
and stay up-to-date with conversations on their Facebook page. https://www.facebook.com/thinkingmomsrevolution.
The Thinkers of TMR are walking a well-worn path created by others who have been their guides. They, like many other parents are on a mission for their children. Join The Thinking Moms' Revolution as they work toward a future full of hope.
Managing Editor's Note: It's encouraging to read more posts from around the country on the fears we face as our kids on the spectrum grow older. I once heard adulthood referred to as "When the school bus stops coming to the house." Here's another terrific post from Jo Ashline of OC Register in California. Read and comment on the full post HERE.
One month from today, my son Andrew will celebrate his 10th birthday.
He’ll have a bounce house, a giant cake, and plenty of friends on hand to help him blow out the candles and mark his first decade here on planet earth. And while I’m still trying to wrap my brain around the idea that my baby is turning 10 (is it really possible?) there’s an even more frightening reality that keeps gnawing at me as I make party preparations: He’s halfway to 20, and less than halfway to becoming a man; a man with autism.
Some of you may think I’m jumping the gun here. After all, he’s only in fourth grade and his cheeks feel light years away from a 5 o’clock shadow. It’s probably safe to say that you don’t have a child with autism.
Those of us that do, live in an alternate universe where the services we’ve gone to great lengths to secure for our children are constantly being threatened by budget cuts, changes to diagnostic criteria, misinformed medical professionals and birthdays.
Alex was 5’9 and every bit of 200 lbs. He was “uncontrollable” and destroying his family’s home. We arrived to find Alex’s grandmother on the front porch. Her arms were literally purple with bruises; the aftermath of one of Alex’s tantrums earlier in the month. She directed us inside where Alex’s mother was trying in vain to calm him down. We found him in the basement lying on his back. Mom was trying to hold his hands. She was crying. She was sweating. She was bleeding. Around him were toddler toys: Elmo dolls, a ring-toss game, coloring books. There were no toddlers in the house. The toys were Alex’s. Alex was 14 years old. He had Autism.
In recent months there have been many high profile incidents concerning police using force to deal with children and adults on the Spectrum:
-Police Taser Autistic Teen and Then, After Family Complains, Return and Arrest Teen
-Teen with autism shot to death by police
-Autistic Man with Toy Gun Killed by Miami Police Officers
The most gut-wrenching of these incidents involved a young man named Stephon Watts. Stephon, diagnosed with Asperger’s Syndrome, was shot and killed by police in Calumet City, Ill on February 1st, 2012 after he slashed an officer with a kitchen knife. This incident has gained national attention and stirred outrage within the ASD community. I would like to offer my perspective.
I am a 16 year-veteran police officer. I am a police K9 handler and trainer with 12 years experience in searching for wandering ASD individuals. I am also an Autism Dad.
Managing Editor's Note: This post in the OC Register caught my eye. We can relate to the feeling of shock, the grief and then rolling up the sleeves and getting to work and back to love.
By Jo Ashline
There is a mommy-to-be out there somewhere rubbing her belly and stocking up on antacids because she’s eating for two (and maybe, sometimes, when no one’s looking, for three). She spends hours researching the best car seat and stroller systems, daydreaming while doing the dishes about long walks in the park and whether she will allow strangers a sneak peak at the most gorgeous baby ever to be born.
Her husband, a good man with a big heart, dutifully goes to work each day, socking away dollars and cents and nursing his own daydreams about teaching his son to play catch. He makes a silent promise to keep his cool when bragging to his co-workers about his boy’s natural talent on the field, his impeccable hand-eye-coordination and his speed and endurance. He does his best to try and stay in the present, but every once in a while, as he crunches the numbers and updates the spreadsheets, he stares off into the distance and pictures his son, a handsome fellow that looks remarkably like him.
Thank you to Leigh Attaway Wilcox for allowing us to highlight this article. To read the full article, please click over to AutismSpot.com.
By Dan E. Burns
“We don’t just believe in miracles,” my guide told me, “we rely on them.” White-haired and in her eighties now, striding ahead of me cell phone in hand, my guide, called “Me-Maw” by some of the residents who to flock around her, prefers to remain anonymous. “I didn’t build this wonderful place,” she explained. “It’s God’s doing.”
She opened door after door as we made our way through clusters of busy citizens in the ceramic workshops, gym, natatorium, and clinic to a fine, on-campus restaurant near the gift shop and gardens of The Brookwood Community, a 495-acre residential/educational village designed to enhance the lives of adults with disabilities. Brookwood provides opportunities to learn, to grow socially, emotionally, vocationally, spiritually, and to contribute to society. That’s the vision. And for most of the 120 residents here, including those with autism, it seems to work.
And “work” is the keynote. Stained glass windows in the non-sectarian chapel portray hands decorating ceramics, potting seedlings, shaping clay. These are some of the community’s enterprises, which also include dozens of greenhouses, swards of poinsettias, bluebonnet place settings, and a hat factory. One measure of their success: Brookwood Community produces nearly $5 million a year in enterprise income through sales of merchandise created mostly by its citizens. That goes a long way – though not all the way – toward the covering the bills. Brookwood is a private pay facility, but most of the citizens are on scholarships. The community accepts no government funding. How do they manage? Like many other teachers, researchers, and parents, I’d come in search of the lessons of their success.
Brookwood came into being through the efforts of parents, volunteers and donors who recognized that there are 30 million adults with functional and intellectual disabilities in the United States. Due largely to the autism epidemic, “DD” (Developmentally Disabled) adults are among the fastest growing segments of society, a national challenge. As father of a 24-year-old son with autism and chair of the Autism Trust USA, I’m keenly aware that a tsunami of young adults with Autism Spectrum Disorder is surging through the school system. When they graduate, we’re going to need a lot of places like Brookwood in central Texas and beyond. How to replicate the model? “We’re working on that,” my guide told me. “We don’t have all the answers. One thing we know for sure: if God is your co-pilot, you’d better switch seats.” To read the entire article, please click into The Autism Spot.
Dan E. Burns, Ph.D., is the father of a 24-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism. Dr. Burns is Adult Issues Liaison for AutismOne. He chairs The Autism Trust USA, (www.theautismtrustusa.org), a 501(c)3 charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, continue to heal, and give back to society.
By Kim Stagliano
Our good friend Lin Wessels and her son Sam have barnstormed Iowa to meet and greet the GOP candidates. Below, Sam asks them what he or she will do for autism as President. We need to do something like this at every event. Ask tough questions. Demand hard answers. When people see my girls, spend a few moments with them, the disconnect of their age and beauty compared to their ability to speak and interact makes grown men weep. I kid you not. The glossing over of the real hardship of autism, even by the well meaning, has contributed to the lack of alarm Anne Dachel writes about every day. Despite the difficulty, bring your kids to meet the political candidates at every chance. Hold up a sign, holler at the top of your lungs, plunk yourself in front of a TV camera. It gets easier every time. We can make a difference. Let the children lead the way.
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Managing Editor's Note: Anne writes about author Susan Senator's recent experience with a son who has "aged out" of school services and the difficulty she faces in crafting a safe, meaningful adult life for him. Susan is a good friend of mine and has been a force for her son Nat's school services and now, adult programs. Her novel DIRT: a story about gardening, mothering, and other messy business is a great read - and deftly weaves the family dynamic of husband, wife marital strife and siblings when autism is in the house. Check it out at Amazon in paperback and ebook. Anne Dachel has been screaming from the rooftops for years "The adults are coming! The adults are coming!" and few have listened. This is an area where we can all agree - our kids will need services and care - most of them for the rest of their lives.
By Anne Dachel
Washington Post: "No one has real answers. They didn't then, and they don't now"
Washington Post: Tiger Mother to an autistic son
Albuquerque Journal: Mother's Fight for Autistic Son Never Ends By Susan Senator
This story started with the Washington Post and it was picked up by the Albuquerque Journal. Susan Senator talked about her mission advocating for her son now that he's aged out of the school system. It's mammoth task and she's had to write her own job description.
It brings back so many memories. My son is 25. How he survived in school until I started to homeschool him, I'll never know. In the second grade, the school system got a psychologist to come from Minneapolis (a hundred miles away) to figure out what was the matter with this weird acting kid. She told us, "Your son has autism. I don't know if he'll ever be able to live independently or hold down a job. We don't know much about autism--it's such a rare disorder. There's probably not another child in Chippewa Falls who also has autism."
Chippewa Falls is about 13,000 people.
It was devastating. I was totally on my own-no one knew anything. I knew lots of teachers, being one myself, and they couldn't help me.
I had to develop my own curriculum.
When John was diagnosed with autism I told his speech therapist the news and she said that she didn't believe it. She told me that she had met an autistic child once and he was nothing like John.
NOW, almost 20 years later, there are two other autistic children in this neighborhood. Every school has their share of autistic students. I'd have to be a complete idiot not to believe that something terrible is happening here. Why are we pretending this is normal and acceptable?
Here's what Susan Senator wrote:
I'm tired of being called brave. But being the mom of a deeply autistic young man of 22, I can't avoid it. Because I survived. Ever since Nat's birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother - or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong - or feign strength. What to expect when you're not expecting autism? No one has real answers. They didn't then, and they don't now. It has always been up to my husband and me.
I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I'm sad because I miss the comfort and safety of the old routines.
The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he's not. He is just a complex young man. He's not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.
Helping Nat have a decent adult life is our family's greatest challenge - not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I've been working on since he was a teenager - along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino's by 19.
Now Nat is transitioning to adulthood, he is finished with public education services, and he begins navigating the far more complex adult-services system. I've done everything "they" tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can't afford a staff person myself, nor will I live forever.
I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends' children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We've all learned that adulthood can be abysmal for kids like ours. And yet without the programs we've got - troubled though they may be - we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.
It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.
I've tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can't get funding until you have a group. You can't get the group together until you have a house. You can't get the house until you have the funding.
And so, on top of all the emotional upheaval, Nat's turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I'm figuring it out as I go, only now I am no longer a young mother.
I posted this comment:
Susan Senator tells us exactly what's out there for young adults with autism. It's an abyss.
I have identical twin boys. Their world today is very different than their world was a few years ago. Pre-recovery, all they got for Christmas was books. It was all they wanted. I'll never forget their 3rd Christmas. As they came down the stairs Christmas morning, they focused on the large stacks of books. They didn't just like any books, they liked the books that were about learning to read, write, and do math. They yelled, "Books!" with excitement, and then tore through the stacks as if they were the happiest children in the world -- getting just what they wanted for Christmas.
I suppose one would be wondering, "What's so bad about that." Well, the bad news is that their world consisted of only letters and numbers. Caregivers and relatives would complain how they would not respond to their name, nor recognize them. At the store, they would point to numbers, while ignoring the toys. At home, they would sit for hours at a time, exploring books. The only attention they gave to toys, were to line them up. The only exception was electronic learning toys. They obsessed over them to such an extent that they were able to use these devices to teach themselves to read, write, and do math. They would write a sentence in perfect manuscript or incursive, such as, "I want a cookie." At first, I thought my children were just geniuses, but. . . . . even though they could write complete sentences, their speech consisted of a very small amount of words. They would approach me and say, "A cookie," or "A drink." When I asked them to say the sentence, "I want a cookie," they would cry instead. I had to admit to myself, that they, too, were part of the current autism epidemic. A local psychologist diagnosed them both with PDD, NOS.
They were 3 years and 3 months at the time recovery efforts were started. They started responding right away, but slowly. They barely made it into regular education classes. They were potty trained just a few months before it was time to start Kindergarten. After a few weeks of school, I was contacted by an Assistant Principal and informed that my children had difficulty with transitioning, and that their obsessions and meltdowns were creating doubts amongst their teachers that they would be able to continue in school. Recovery treatments were stepped up, and they were able to continue in regular education classes. Today, they are in the 2nd grade, and treated by school personnel as if they are neurotypical. Most days they do well, but there are still some meltdowns. Recovery is not absolute in my family. Those last few symptoms seem to be stubborn, fading back in from time to time. Just when you think they may be able to tolerate a reduction in recovery treatments, a symptom will flare back up. Thus, they are in managed recovery which has it's own set of stresses and uncertainties.
(Here are the boys last week in their holiday show.)
My life was touched with grace, to my surprise, twice this week. My 24-year-old preverbal son with ASD, Ben, is on the wait list to have a foreign body removed from his ear. When the surgeon’s scheduler called this morning to give us the first available date -- 5:30 PM tomorrow -- I told her I was concerned about the no-food-or-drink-after-midnight rule. “Because,” I added, “of his autism.” After a brief hold, she got back to me. “Mr. Burns, I talked to the doctor, and you are scheduled for noon.” I thanked her. “No problem,” she said. “I have an autistic nephew. I know how difficult it would be for Ben to be hungry all day.”
On errands, we parked at the superstore and Ben ran ahead, vanishing. He could have been anywhere, avalanched in the crowd. I asked a young clerk to call security, mentioning my son’s ASD. She flashed a message to the manager, who called groceries and electronics. “I have a cousin with autism,” she volunteered. “He’s five.” Within moments two staffers were walking Ben back to me. One had a youngster on the spectrum. I thanked the staffers and apologized to the manager for the inconvenience. He shrugged. “Happens all the time.”
This is a kinder, gentler world, in my experience, than the one Ben was born into. There was not a hint of the impatience, blame, panic, and miscommunication – “He’s what? Artistic?” – that would likely have characterized this little drama fifteen or twenty years ago. In fact, it was hardly a drama at all.
Nonverbal child with ASD loose in the store? It happens all the time.
Dan E. Burns, Ph.D., taught Communication courses as an adjunct professor at Southern Methodist University, the University of Texas at Arlington, and the University of Phoenix. In 1990 his third child, Benjamin, was diagnosed with autism. Burns is the author of Saving Ben: A Father’s Story of Autism. He serves as Adult Issues Liaison for AutismOne, and he chairs The Autism Trust USA, (www.theautismtrustusa.org), a 501(c)3 charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, give back to society, and continue to heal.
It’s been a while since I’ve written to you, well, at least for myself anyway. I’ve been on a letter campaign of late without much success at peaking anyone’s interest, and I’m hoping you can help. The Easter Bunny told me he was too busy with paperwork , but after many letters and filling out several forms in triplicate, he agreed to finally meet with me. He listened and nodded appropriately, pasted on a sympathetic visage to accompany his glazed over eyes and then told me there was nothing to be done about it and asked that I stop writing.
I tried having a couple of teeth pulled so that I could get the Tooth Fairy’s attention…no cost is too great if it will help find the answer. She said she could help, that she knew what to do. It was exactly what I had hoped and dreamed for, it was perfect…but it would cost a few more teeth. I willingly provided them, again and again and again, but to no avail and no answers.
I bumped into a little green leprechaun by the side of the road the other day and told him my dilemma, but he said I’d have to find his pot of gold at the end of the rainbow in order for him to help and, well, we all know how that turns out.
Officially, Frosty the Snowman was willing to help, but he’s lost his top hat, so he had no real power. Privately though, he confided that Jack Frost had been lobbying Mother Nature to reject my request, otherwise he wouldn’t make any snow this winter.
I didn’t even try appealing to the Wizard council, since most of them can’t be bothered to learn new spells to help others, and those that do are being cast out and stripped of their powers.
I had high hopes that Cupid would help, though. I thought his compassionate nature, search for knowledge and objectivity would be most helpful in my quest. But, as it turns out, he has a bit of a mean streak and was out on his annual witch hunt when I stopped by.
And so that brings me to you Santa, my last hope…
I’m not really asking for much. In fact I’m not even asking for me, you see, it’s for my son and all the other mother’s sons and daughters, for the brothers and sisters, nieces and nephews, friends and strangers. My wish is relatively simple when you compare it to all your other feats…hiding a castle and all its elves from those prying eyes in the sky, flying around the world delivering millions of presents in one night, not to mention the whole sliding down a few chimneys trick. My wish will only require a bit of magic, and some perseverance, but I promise you, it will be the best gift you have ever given, at least in my eyes.
All I want for Christmas, Santa, now and for every Christmas to come, is a cure for autism and all the pain it has caused.
Wishing you a Merry Christmas,
A loving and toothless Parent.
P.S. If you grant my wish, you’re job security will increase exponentially as 1 in 90 children who might not have known you existed before will wake up to the magic that is Santa.
Use your Hanukkah gelt or stocking stuffer cash for a trip that's sure to make Chicago "your kind of town." Autism One is a whirlwind of friendship, support, knowledge, partying (what, you think we're all business?) and energizes attendees to seek answers for loved ones throughout the year.
• 100+ SPEAKERS/PRESENTATIONS
• 20+ TRACKS
• 5 DAYS
• 3 KEYNOTES
• 5 FEATURED
How did you know that your child could be helped? Someone told you the truth. After a decade of AutismOne's service to you, your child, and your family, that is what the AutismOne/Generation Rescue 2012 Conference continues to do -- present you with the truth . . . the truth that leads to treatment. It's the dawn of a new decade for AutismOne. It's the dawn of a new era for your child.
This year's proceedings include Nobel Laureate in Physiology or Medicine Dr. Luc Montagnier, best-selling author David Lender, and a major announcement we hope to make later this week. The conference registration fee has again been waived. There is a minimal processing/materials fee of $25, and those registering through February 15, 2012, will receive a coupon for three free digital lecture downloads from the 2011 video selection. There will be affordable childcare spots available to conference registrants on a first come, first served basis.
AutismOne is also pleased to announce the opportunity for you to make tax-deductible, year-end donations through our new donation button starting December 26, 2011. Please help us continue to help children and families far and wide through the many educational and advocacy initiatives of AutismOne, including the conference, Autism Science Digest, AutismOne Radio, and much more. Many thanks for your kind support. www.autismone.org.
The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
My typical children cannot wait for their birthdays. They love the anticipation and excitement of counting down to their special day. I hang a Happy Birthday banner and place a special table cloth at the dining table when their day has arrived. Ronan’s birthday is no exception to the excitement that fills the house when it’s his birthday celebration time; he just doesn’t always show it. His siblings announce the countdown for his big day which is “just three more days to go, Mommy!!!!” Giddy sisters and a brother jump up and down for Ronan when they see that the banner and table cloth have finally made their appearance. The kids burst with excitement when the presents show up on the table. Ronan usually doesn’t show a great interest in joining the celebration until he realizes the cake on the table is his.
Ronan’s ninth birthday is this week. As each of my children’s birthdays approach I reflect on how long that baby of mine has been alive. I think about how quickly that little bundle grew right before my eyes. I pray that I’ve done the right thing for that child in the years we’ve already logged. I also cherish future thoughts of sharing many more years together. Obviously Ronan’s life and my reflections are drastically different than those of his typical siblings. The typical sibs are just that: typical, able, full of accomplished milestones. Ronan, on the other hand has much still to catch up. His disabilities, his struggles and his needs cause me to pause when I reflect on Ronan’s past. Those milestones he should have sailed through so many years ago stay forefront in my mind—talking, stringing words together, talking in sentences, starting conversations—several of those skills are still being worked on.
I catch myself spending more time thinking about Ronan in the few weeks before his birthday. Some days I cannot believe he is still here with me—he’s had some scary illnesses and situations that I didn’t think he’d pull through. Thankfully the kid is still here, still teaching me lessons in life. I am filled with many thoughts about Ronan that are full of wonder, sheer wonder as I think about who he is and how his life has changed me. Ronan’s made some major leaps the latter part of this year that leave me wide-eyed and jumping for joy. His last six months are full of wows that have forced me to slow down to immediately celebrate Ronan and Ronan’s abilities. I’ve been moved to tears watching him make major communication connections which have opened a new door to learning. We knew Ronan could read when I asked him over three years ago, “Hey, Ronan. Can you read this?” and he could sign his responses to me. I recently shared on AofA that Ronan can write and now look at what Ronan brought home from school one day. He does in fact understand ‘rithmatic facts!
Ronan matched numerals 1-12 correctly in his book.
Number sense can be such an abstract concept, but
Ronan has conquered yet again!
These latest connections fill me with more hope for Ronan and they give me more confidence in myself. After seeing Ronan’s math work that day I shouted whoops of joy, made several phone calls to our family to announce yet another emerging skill. After sharing Ronan’s math picture around the web to friends I cried. I cried tears of joy because that my boy is growing up. I cried tears of regret that I sometimes spend too much time worrying about his past. I also cried tears of relief because I can almost allow myself to see, feel and celebrate Ronan’s here and now. I was caught in a swirl of emotions that day. Thankfully the positive, happy, can-you-believe-it ones stayed present in my mind.
After that math moment I again renewed my commitment to believe in Ronan. I felt us both tiptoe forward, closer to more awareness and cognitive healing. I reminded myself to be surrounded with what I hope is positive and helpful. I also slowed myself down and remembered to look to Ronan to guide me with what he can handle and manage. If I can remember to let him set the pace I know we can both celebrate another moment of Ronan Can Do.
A little over a month ago I asked Ronan a big question I’ve started to ask him, “Hey, Ronan. Can you ____?” We were in my office on a Friday night. I was supposed to be getting the kids ready for bedtime, but I was aching to write a story. Ronan was antsy and wouldn’t stay with his own activity. I’ll sometimes let him youtube with me as long as he doesn’t get too close to the computer screen or try to shut the computer off (our monitor now has permanent pen marks where Ronan tried to trace letters on a word document I’d left open; and, buttons are buttons that have to be pushed). That evening Ronan kept coming back to me gently shoving my wheeled-office chair away from the desk. It was utter chaos as my husband was away for a business trip and my typical kids were doing everything but getting their jammies on.
The kids took full advantage of me being exhausted while I tried to sneak away from their bedtime routine. I kept trying to shoo Ronan away too, but he kept coming back signing “computer.” After 3 or 4 more interruptions, instead of the two of us butting heads I gave in and said, “Ronan, do you want to watch a movie?” I love how Ronan assures me he’s listening. I also love how he’s able to tell me that I’m doing a good job communicating with him. He smiled his goofy smile and signed yes. I moved the keyboard in front of Ronan and said, “If you want to watch a movie, you need to type your words. Ronan, can you type?” Before he could sign anything I opened up a new word document, increased the font size, turned the caps lock on and watched Ronan spell what he wanted to watch. How floored was I to discover that Ronan can type on a keyboard! He successfully typed CAT. His next word was HAT. I immediately switched to youtube and found a favorite “Cat in the Hat” clip. While the movie was playing I raced downstairs to where my other children were and squealed, “Ronan just typed a word! He typed CAT!!!!!” I bounded back to the office computer before the movie clip was over.
Pulling up the word document I asked Ronan, “Hey, can you type something else?” It took a few slow tries in the beginning but Ronan was able to hunt and peck for the right keys. He hit the caps lock key off which slowed down recognition of the letters as they appeared on the screen. Still, Ronan had good accuracy and as always, showed great determination. Ronan looked toward me, signed “b” and “baby” and then went back to the keyboard. I said, “Do you want to watch Baby Einstein? Spell baby.” He typed out:
Hoping to draw more words out I asked Ronan, “You still want to watch it?”
I played a short clip and then reopened the word document again. Ronan had pointed to a green puppet in the youtube sidebar. He signed “yes” when I asked if he wanted to see that video next. As I sounded out green for Ronan to type, he produced this:
My eyes were a bit wet as I tucked my children in that night. If I hadn’t taken a break from what I wanted to do and if I hadn’t asked Ronan if he could type what he wanted would he ever have been willing to show this skill? Plus, would I have ever allowed him to use my computer when in the past he’s shut it down, locked me out of it and scribbled all over the screen? Because I’ve seen my son overcome more struggles than other children will ever have to face, I am thankful that I keep taking chances on Ronan and his abilities.
Since that Friday night Ronan and I have shared more typing and writing moments. He can now type simple, full sentences. He signs, I articulate and sound out his words and he types. This was one of Ronan’s latest typing episodes:
PLAY MOVIE YES
NEW MOVIE YES
I WANT MOVIE
I caught video of Ronan showing me with signs what he wanted while he made vocal attempts and signed his request:
With these recent breakthroughs I have had more reasons lately to look forward with Ronan than to look back. On these good days, I stay truly hopeful and find peace in many of the decisions I have to make for Ronan. Upcoming birthdays like Ronan’s ninth one this week have the potential to be one of those really tough days to get through. Bittersweet, not what I expected, resentful and why bother could easily be words or phrases of how I might have reacted to past birthday. I can’t say I won’t feel those emotions again on Wednesday. Ronan isn’t going to be nine in the truest sense of the word. He still lags so very far behind. He can’t take care of himself and I am surrounded by constant can’t, won’t and doesn’t. Dealing with both kinds of days, good and bad, and with the many emotions that flood each type of day is truly overwhelming. Since I’m a true believer in finding something hopeful I pray that I will truly be able to celebrate Ronan and where he is his life right now.
One of the last sentences Ronan typed earlier this week was “I WANT BABY” for one of those Baby Einstein videos he still likes to watch. Seeing that sentence hover on a clean white word document reminded me of how sad I can still get when I think of Ronan as that perfect little baby he was. I too want baby, my baby, that baby I carried and then lost to delays, silence and autism. I crave time that went by too fast and time I can never get back. Ronan’s baby days were filled with no thoughts of regression or wandering and being non-verbal. I yearn for how young and carefree I felt as a new mommy never thinking twice about Ronan’s future except that it was going to be happy, easy and wonderful. As much as I’d like to jump into a time machine to change some of what happened to my child, I would want to use that time machine to whisk myself away to Ronan’s future. I can’t wait to see what else this little boy can and will do in life. I’d love to get a sneak peek at myself too to see how I handled everything. I’m sure the two of us will have worked hard to overcome and to celebrate many more moments together.
Knowing that I have to live and relish each moment I face now brings me out of those time machine thoughts. I had that baby of mine nine years ago this week. That baby is a growing boy constantly teaching me that what happened in the past is part of the past. The past does affect the future, but I can be in charge of gently pushing Ronan to keep him going forward. I’ll always be ready to shape and encourage his abilities through one successful and believable moment at a time.
Cathy Jameson is a Contributing Editor for Age of Autism.
Managing Editor's Note: Thanks to Lin Wessels for sending us a post in keeping with the holiday season of peace and love.
By Lin Wessels
I want to tell all of you about my husband today, the man I married. He is the man in our lives who gives us stability and as much certainty as is possible once autism has claimed your only son; for me, my only child. He’s the kind of man who stands tall and proud, very often a head above the fray. He is a man who deserves, by far, more respect and admiration than he all too often finds. He is also a man very much in touch with his own feelings. A man who sobbed at the foot of his young son’s bed as he lay sleeping, the night he had learned his only heir had autism. I have yet to see him cry about his son’s autism since that daunting night, although I am guessing he must.
My husband was a very accomplished athlete in his younger days. To this day, athletics; his love for competition, are still an important part of his life. I cannot even begin to know how it must feel to him knowing his son most likely will never not only share this passion with him, but most likely will never be able to participate in sports nor even attend a sporting event with any sense of belonging.
He also loved cars, especially fast cars, as young man. I think about how it must feel to him wondering if his own son will eventually have the wherewithal to be able to drive. The time is yet to dawn upon us, but if I were forced to make a wager today, I’d bet he will not. I hope and pray that I am wrong.
While autism has taken much from my man and his son, from his family as a whole, it has also given him much. He is man who has evolved far higher than most ever will. He is a man who recognizes a mom, a complete stranger, with a young child who has autism. He sees the uncertainty in her gaze, the fear in her eyes and the pain in her face. He approaches her and offers her not only words of encouragement, but a place to turn for support and help, a safe place void of people who do not understand or seem to care.
Thank you to AofA reader Joanna McGowan for giving us a copy of her beautiful children's book called You Are My Star for one lucky reader. You can personalize the first page to tell YOUR child he/she is your star. Each page features children's artwork.
Pleave a comment to enter. Buy a copy of You Are My Star HERE.
Managing Editor's Note: Last week I had a chance to email a terrific Dad named Cody Jordan whom I've met at Autism One. His response was so encouraging I asked him if I could share his wonderful news about his son's progress. He agreed and so, for our "dreams" category, we bring you Cody Jordan and his son Harrison. I dare you not to grin from ear to ear. Improvement, recovery is possible - don't let anyone tell you otherwise. KS
His name is Harrison Jordan, and he's doing great. For the past year, his g.i care has been under Dr. Krigsman, and I'm soooooo glad we took him down to Texas (the few times we have) to have him seen by Dr. Krigsman. I don't think I've ever met a more compassionate doctor anywhere else (except for maybe Dr. Usman, who I also take my son to). His chronic diarrhea and abdominal pain (shown through posturing and verbal complaints of pain) are gone, and he's starting to put on weight at a normalized rate. This was one of the last big hurdles (it's actually felt more like a steeplechase). We just had the viral crud pass through our house, and he was the only one who didn't get it. His immune system is that much stronger.
He's talking almost like any other kid his age, and the last few times we've taken him somewhere that there are many kids his age, he's actually tried to make friends. Yes, he actually went up to another boy his age and asked, "Will you be my friend?" and then asked, "Will you go down the slide with me?" I just about broke down in tears. Well, maybe I did shed a few tears, but who the hell cares about "man points" when it has to do with my son's recovery?!?!?
He's also aced most of his spelling tests in first grade, and he's being pulled out less and less for the resource room. People still say (after finding out he has autism) things like, "I'm so sorry. It must be so hard." It's getting easier and easier, and I'd say that my family has a pretty normal life. It's taken extraordinary amounts of time and money. I mean, sure I could have nicer cars and a bigger house, but it wouldn't mean jack squat to me if my son still sat in the corner of the room, alone and spinning the wheel on a toy truck. Oh, I have since thrown that truck away.
So, to sum it up, he's doing great. His recovery is going great, and he's even starting to extort money from his three-year old little brother. He will actually go up to him, snatch a toy out of his hands, and demand money (usually from ten to twenty-five cents) to give the toy back. So if my three-year old comes up to me asking for loose change, I know something's up!!! Things are great; they just keep getting better, and I wouldn't trade any of it for the world.
Sorry about getting so wordy in this reply. When it comes to my son's recovery, I just love to brag!!!
Small town, rural living has its drawbacks. The nearest pediatric dentist is 36 miles away. OT, PT, Speech, or any therapy outside of the school setting for that matter is that same 40 minute trek. The nearest LabCorp takes us 4 to 4 ½ hours in good weather, on a good day. The nearest movie theater is 24 miles.
It has its perks, too. When we refer to travel, miles and minutes are typically interchangeable. Driving 24 miles will take us 25 minutes. An industrial sized combine or a tractor pulling wagons is more like to delay traffic, than actual traffic. You know your neighbors and your neighbors know you. This, though, can be either a plus or minus, as you can imagine.
I am both cursed and blessed to work in the public school where our nine year old son attends a mainstream 4th grade class with a full-time aide. We are very fortunate with his placement. It works. His teachers, the aides, the staff, his classmates, all know us. We’ve made it a priority to educate them about autism, about our son, about Sam and his differences. I’ve been told by parents on the outside looking in how fortunate the parents of students with autism to follow will be having our tracks laid out before theirs. Autism was relatively unheard of before Sam entered our school. As you can well imagine, that is no longer the case, sad to say.
Although his classmates readily accept Sam, friendships still come hard. Aside from another boy with autism from another rural school, I can count on one hand the number of birthday parties my son has been invited to attend. Four, he has been invited to four “typical” children’s birthday parties. When he does make a friend, the relationship is invariably very one sided and short lived. We work very hard at nurturing the friendship, keeping it alive. We invite the child over and welcome him every opportunity available to us. We have the best birthday parties and outings. We go all out! Sam, on the other hand, has never spent a day or even an afternoon at a friend’s home, nor has he had a day out with another child. He has never been invited to. Fortunately for him, Sam does not take notice. His mother and father on the other hand, very much do. Our hearts ache to find that one true friendship for our son. Even just one….
There is a child in Sam’s class who has been especially kind to him, giving him his used Pokémon cards and books, something Sam cherishes. We asked him on an outing in attempt to thank him. This past Friday, he came home with us from school. The boys played Wii. I love the Wii. It has been the universal language of making friends in nearly all of Sam’s play dates. I thoroughly enjoyed seeing and hearing them play together. They had light saber wars and boss battles. Nothing was forced. It was so nearly “normal”. I was overjoyed for my son.
Managing Editor's note: What a great story of success. Congrats to Nate and his family. Photo credit goes to his Mom. KS
Nate Christensen seems like a typical almost-18-year-old boy. Now in his senior year at Bingham High School in South Jordan, he plays the trumpet in the marching band. He took a longtime friend to the school’s homecoming dance. He loves popular music artists from Justin Bieber to Owl City. He enjoys playing “Just Dance” on his family’s Nintendo Wii and writes a blog in his free time. He admits that his favorite class at school is his sports class.
But two things set him apart. One is that he’s earned 132 merit badges — every possible Boy Scout merit badge he could earn. The other is that Nate is autistic.
Nate's mother, Sandy Christensen, said that Nate tests somewhere in the middle of the autism spectrum. One wouldn’t easily guess that when talking to him.
Autism is known for causing marked impairment in social interaction and troubles with communication. But once you get Nate talking about anything that has to do with the Boy Scouts of America, the conversation flows with ease.
“Did you want to see two badges that I liked most?”
“Don’t you notice the badges that are gold framed?”
Nate’s 6-foot-3 frame might be intimidating at first, but he’s anything but. He sits on the sofa in his living room, holding his hands together in his lap, proudly wearing his Scout uniform and sash. He points to a grape soda pin, a tribute to Disney/Pixar’s “Up,” talking about how that’s actually his personal favorite even though it’s not an official badge.
Read the full story at Deseret News.
By Heather McLennand-LaMont
Every parent of a child with autism has that ‘box’ in their head. You know the box I mean, the one that you put all your dreams, hopes and expectations after your child was diagnosed with autism. This weekend thanks to the Theater Development Foundation (TDF), I was able to dust off my box, and pull one back out to share with my 7 year old son Liam: a Broadway show. Now, to some this probably sounds silly and possibly trite; but to me, a girl who grew up on the stage and went to school in New York for theater -it was one of the hardest ones to give up. So, when I heard that the TDF was pairing up with “The Lion King” to do the first ever “Autism Friendly” Broadway show, I jumped online and got tickets.
As we had to trek down from Beantown, we had to give drive time and traffic consideration and arrived at the Minskoff Theater almost 2 hours early. I have to say I was worried; Liam was already asking for his earplugs. Luckily there is a Disney Store almost across the street from the Theater, and as long as Liam is on Dad’s shoulders….he can shine on.
We lined up at the theater as early as we could, and camped out while Liam ate lunch. Within five minutes a volunteer stopped by to give us an idea of when the house would open, handed us earplugs and a visual schedule for Liam. She also gave us a visual story of the characters from the Lion King movie paired with the actors from the stage production. All of the volunteers were easily recognizable due to the bright yellow Lion King shirts they wore, and they were able to direct you to anywhere you needed to go in the theater. Once inside there was a ‘”Greeting table” that had more visual schedules as well as a social story for the show. We were also directed to where the sensory break areas were – which we promptly headed to so Liam could do some crashing into beanbags.
On top of the beanbags there was a poster visual aide for how to deal with feeling anxious about the show, as well as little cards entitled “Hakuna Matata” with strategies on how to deal with feeling anxious. A table was set up with coloring sheets, crayons, books with photos from the show, and Simba dolls to play with. There were even small weighted blankets for the child to put over their lap.
Liam took some time dive bombing into the bags, and then we headed into the theater. This isn’t my first time at the Minskoff, but I have to say nothing will ever top this experience. It was probably the most concentrated area of “autism” I had ever encountered, and as I looked out across the theater I realized just how amazing this was. It was a ‘moment of normal’ that as parents of children with autism we so desperately crave. Stimming, twirling, vocalizing, tantrums and screams garnered a smile or a nod of “yah, we know the deal”. We were in the middle of Manhattan, at the “Great White Way” and there was no judgment or explanations needed: our tribe had arrived.
As it got closer to curtain, Liam was having a harder and harder time waiting. He was scared of how loud the production may be. I spent the last 20 minutes giving deep tissue massage, as my husband David ran around looking for things to distract Liam. The old stand by of the iPod did not fly; he was afraid to remove his earplugs for fear the show would start and it would be super loud. Some families ended up watching a live feed with their child in the lobby by the concession stand as just the theater itself with all that open space, people, and noise caused complete and total meltdowns.
Managing Editor's Note: A couple of weeks ago I got an email from this young woman, sister of a boy with developmental issues. She was asking my advice on how to assist him in school. I responded with a few ideas right away, all the while thinking to myself, "The siblings will change the paradigm." She kindly agreed to write up her experience. Enjoy and welcome Amber to AofA.
By Amber Burris
While my little brother may not have an autism diagnosis, he has dealt with many of the challenges kids with autism face because of his developmental delay. When Brandon was born, he had the umbilical cord around his neck and was oxygen deprived. The doctor actually lost Brandon's heartbeat at one point and immediately had to get Brandon out.
For the first few years of his life, Brandon had almost constant ear infections and that caused a speech delay (he was 3 years old and couldn't say 25 words). Today, Brandon is in a special education math and reading classes as well as a study skills class (study skills helps Brandon stay organized so studying is easier for him). Because of this, middle school has been a little slice of heaven compared to his elementary school years.
During elementary school, my mom had to fight non-stop for Brandon to get the education he deserves. He had an individualized education plan (or IEP), and he still does. Due to having so many students, teachers either wouldn't follow his IEP or just found loop-holes. We were stuck in a vicious circle of being referred to a special education advocate from the state by our super intendent and to our super intendent by the special ed. advocate. Some people just told us to give up since Brandon didn't have a diagnosis.
We tried getting Brandon into Cincinnati Children's Hospital for testing (and hopefully some answers) but the waiting list was well over 8 months long. At this point, the school was making matters worse. Brandon was being pulled out of core classes like math or English for speech therapy or Voyager reading (special ed. reading). He, then, would be assigned homework on a topic he completely missed and, therefore, didn't understand. We, unlike most families, couldn't wait for Brandon to get to middle school. We had heard our school district's middle school was AMAZING with special needs students.
By Allen Tate
I remember the first time I saw the phrase, “affected by autism” used to describe a child on the spectrum. I couldn’t help but think, aren’t we all? A few minutes later, I heard my mom call down the stairs for what must have been the tenth time that day, “Does anyone smell poop?” The answer became certain. For better or worse, everyone is affected.
Recently, I have spent time considering exactly how I have been affected, as well as what that effect has been. This has often led me to feel conflicted. Growing up with two siblings with autism has shaped my life in countless ways. It is a part of part of my identity. I would undoubtedly be a lesser version of myself were it not for Kenny and Olivia. But that is not say it was easy. In fact, the more I think about growing up, the more I realize that some of it was pretty bad. And other parts, were worse. There were the major events, such as my brother’s grand mal seizure while I was away at a basketball tournament, or when my sister, who used to spend whole days playing outside, refused to leave our house, and many days even her room, for nearly a year. There were certain facts of life that could be difficult as well. For example, something I had to learn early on was that my siblings were infallible. It was one thing to accept that when my brother hit me, it was simply because he couldn’t express being upset. Occasions when he broke into my room, however, tearing up my books, pictures, and baseball cards were harder to reconcile. As a 12 year old, it often felt impossible. I had been wronged. My things had been ruined for no reason. I had even taken the precaution of locking them away. What was I supposed to do, just clean up and hide the key better next time? Well, yes. I had to accept that no matter how it looked to me, Kenny and Olivia were trying their best.
I can most clearly see the effects of my childhood in my interactions with other people. In my family, patience is a survival skill. As a result, I often find it strange when it is referred to as a commendable trait, like saluting a person’s ability to breathe. Thanks to Kenny and Olivia, for they who deserve it, I have patience in endless supply. For the same reason, however, for those who lack an excuse, my tolerance is nonexistent. It is what has allowed my family to be so happy despite its hardships. My siblings have taught me a great deal through example. I can think of no greater test of patience than what they do on a daily basis, facing a world that they do not understand in a condition that they neither chose nor can change.
I wonder sometimes what my life would be like without autism. I certainly wouldn’t have such a keen nose for poop. And I doubt that my knowledge of Barney videos would be quite so extensive. But what I really wonder is if my life would be as good. Would I be such a patient person? Would I appreciate my parents the same way? Would they appreciate each other so much? Would my brother and sister still be my best friends? I will never know the answer.
Managing Editor's Note: Happy one day late birthday, Chuck.
By Chuck Hancock
Another birthday today. Catching up to my friend "dirt," slowly but surely. My present however came yesterday, sitting in, of all places, Chick Filet. Charlie, my almost 6 year old son, wanted to go there to play in the play area, lots of climbing. Of course, french fries were also involved. See, 3 years ago, if he said 2 words in a row that was a big deal. For those who don't know, he has an autism spectrum disorder. 3 years ago, he would have been, if he was in the play area at all, not even looking at the other kids playing, or trying to play with them, or talk with them. But, yesterday, he was playing with them, actively communicating with them, laughing with them. Wow. Just wow. He has been working his little butt off for 3 years, hardly a day goes by without some sort of therapy, class, something. He has a long way to go, but boy has he come a long way. Off to kindergarten next Monday. I call him my little science project. Every day he surprises, and brings joy to, his Mom Susan and me. Ok, maybe a little agony. Many think autism cannot be cured. I'm not among the many. No doubt about it, his autism will be cured. Rest assured, as long as I have birthdays, together with Susan, we WILL do virtually everything possible to rid Charlie of this awful disorder.
Congrats to winner Maria Milik!
A proud Mom sent me an email telling me her son had published a children's book, he's 9 with autism. Was I interested in reading it? Indeed! Leave a comment to win Jack Paschall's The Day They Sold the Moon. About the book:
It is certainly news when a 9 year old boy writes a book and gets it published. However, when a 9 year old boy who suffers from autism writes and publishes a book then the world sits up and takes notice. This is very much the case with Jack Paschall. Jack was diagnosed with autism at the age of 2 but now, only seven years later he has published a book called The Day They Sold The Moon.
The book is a delightful tale that has it main character, also called Jack, intrigued if not a little obsessed with travelling to the moon to see if it really is made of cheese, as he has read it is. With the help of an alien being called Musher Jack does indeed make it to the moon and also discovers that it actually is made of cheese. In fact, he sets up a cheese business using the moon cheese with the help of Musher the alien. However as his cheese empire grows the moon gets smaller as it is literally consumed.
Without revealing what happens in the story, Jack Paschall’s wonderful story tells the tale of how the boy discovers that natural resources should not be wasted and certainly not for money nor what money can buy.
For information on the book as well as the ability to buy it straight off the page please visit www.daytheysoldthemoon.com today.