Chicago’s ‘An Evening with the Stars’ Raises Over $150,000

On Oscar Night, Sunday, February 26, 2012, Autism Speaks hosted An Evening with the Stars, a red carpet spectacular with the glamorous backdrop of the 84th Annual Academy Awards® broadcast, at the Hyatt Regency O’Hare, 9300 Bryn Mawr Avenue in Rosemont, Illinois.

An Evening with the Starsbrought the glitz and glamour of Hollywood to the Windy City, featuring red carpet arrivals, pre-show interviews broadcast live on the big screens and live and silent auctions with prizes ranging from dinner-theater packages to all-expense paid trips to Hollywood and New York City.

Guests were treated to a very special multi-media segment featuring milestones and accomplishments of individuals on the autism spectrum, with musical accompaniment provided by Chicago recording artist Andrew Salgado and Grammy Award winner, Jim Peterik.  Salgado and Peterik, who is best known for his work with the band, Survivor, and Ides of March, have been long-time supporters of Autism Speaks.

Steven Insoft, Autism Speaks’ Chicagoland Chapter board member and chief financial officer of Aviv REiT, served as Executive Producer of this year’s event. Insoft dedicates his involvement to his son, “For me, this is a very personal cause. My involvement is for my son and for my family, as well as for the tens of thousands of other Chicago area adults, children, families and caregivers who struggle with autism.”  Through the generous support of Aviv REIT, the Insoft Family, the Schlaack Family, FirstMerit Bank, Cathedral Rock, Bulley & Andrews, Maplewood Senior Living, the Village of Rosemont and others, the event welcomed more than 300 guests, raising over $150,000 to support Autism Speaks.

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In Their Own Words – Finding Autism Island

March 1, 2012 18 comments
Christine Passey is a wife, mother of two, social worker, and writer. She has been very involved in the autism community since her daughter was diagnosed in 2010. She is currently deeply involved in working to end autism insurance discrimination in Utah. She started her blogwww.thinkingovercoffee.com to work through her thoughts on mothering, autism and advocacy.

Photograph by Heather Sander Photography.

Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might “save you.”  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.
This is how I felt before Skylynn was diagnosed with autism.  I had no idea what was going on, how to help her, and why she was the way she was.  I made desperate attempts time and time again to help her be “normal”.  Maybe this play idea or that strategy might help Skylynn catch up to her peers.  They never worked and I never knew why.  I figured I must be a failure of a mom.  Some days I would give up all together and sit Skylynn in front of Sesame Street and not try at all.  I was so lost, confused and depressed.
Now let us go back to our boat.  One day you see land in the distance.  You think you might be imagining things since you’ve been lost at sea for so long.  But you might as well try and get there, might as well see if it is land.  What do you have to loose right?  Then surprisingly it is land.  It is not the land you imagined.  In fact it looks almost nothing like what you expected.  But, in its own different way it is absolutely beautiful.  It is a difficult land.  Much more difficult then you ever thought it would be.  But it is still land.  You can set up camp and work at making a life for yourself.  A different life then you planned.  One that requires a lot more work then you ever thought possible.  But, it is a good land and you can create a good life on it.
This is how I felt when Skylynn was diagnosed with autism.  I had finally found land.  I had a place to stand, a place to start a life.  I finally understood what was going on.  I was relieved to find out that I was not the horrible broken mom I thought I was.  There were reasons all my desperate attempts to help my daughter become “normal” always failed.  They failed because my daughter wasn’t meant to be normal.  She was meant to be Skylynn; sweet, silly, beautiful, mischievous, unique, Skylynn.
It has been a long time since I was lost at sea.  I have had time to explore the devastating pit falls in this land, and I have felt the loneliness, despair, pain, and rejection that lie in them.  But I have also climbed to the amazing mountaintops of this land.  These highs are indescribably.  The joy, love, excitement, triumph, pride and bliss of these peaks can never truly be explained to someone who has not climbed them.  It is true that my land is very different from most of my friends’ lands.  But I would not change it for the world.  My land has taught me to love every small beautiful moment and to be patient through every difficult one.  It has taught me what true love is and who true friends are.  It has taught me I am stronger than I ever thought possible.  But most of all it has taught me that Skylynn was never lost.  Only I was.  It is a beautiful thing to live on the island of autism with her.  I love you my beautiful daughter.  Thank you for this place and giving me the chance to live on it with you.

*Interesting note.  I wrote over half of this within a few months of Skylynn’s diagnosis.  I couldn’t finish it because I was just beginning to explore “Autism Island”.  It has been really interested to go back and finish it now.  It is my true perspective at two very different times during this process.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – 03.01.12

SPOTLIGHT: Teachers of autistic students use iPads (Glen Gllyn, Ill.)
Teachers of students with autism say it’s the year of the iPad. It provides motivation. It helps with therapy and handwriting practice. It even models appropriate ways to share toys or take turns. Read more.

Autism, clean stream projects win fair (Muskogee Phoenix)
Winning exhibits at the Muskogee Regional Science & Engineering Fair could help people with autism communicate and help clean area streams. Read more. 

Autism Associates Comes to the Area (Perkiomen Valley)
Debbie Greenwald, Autism Specialist, Board Certified associate Behavior Analyst, Relationship Development Intervention (RDI) Certified Consultant, is the founder of Autism Associates – a program that provides services for families affected by autism and other neurological disorders. Read more.

Autism Speaks prepares for walk, 5K Sunday in West Palm Beach (Palm Beach Daily News)
Being connected has its benefits. When their then-2-year-old grandson Christian was diagnosed with autism in 2004, Bob and Suzanne Wright of Palm Beach and New York let their fingers do the walking. The developmental disease took their grandson’s ability to talk. Read more.

Autism coverage bill clears House (The Salt Lake Tribune)
A bill that would qualify hundreds of young children with autism for Medicaid coverage during a two-year pilot program passed easily through the House Wednesday on its way to the Senate. Read more. 

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

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When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling.  At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs.  We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation.  But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing.  He became less talkative, developed verbal tics, and made eye contact less often.  He would obsess about movie videos, ceiling fans, and where we placed his food on the plate.  We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children.  He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive.  He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground.  We were always being told that people with Down syndrome were so lovable and good-natured.  Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability.  During one medical visit, we were told “so what if he had autism, what difference would it make?”  One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility.  We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally.  After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best.  The medicines he took and the way his medical providers approached his care significantly changed.  With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges.  In fact, as he has grown older, those challenges have only increased.  But the diagnosis has provided relief to our family because we now understand him better.  We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them.  And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

Autism in the News – 02.29.12

February 29, 2012 Leave a comment

Teacher allegedly ordered boy with autism into cardboard box (Wildomar, Calif.)
A Riverside county teacher has been removed from her classroom after a mother complained to the school district about her child being ordered to go into a cardboard box. Read more.

Gluten-free, casein-free diet may help some children with autism (Medical Xpress)
A gluten-free, casein-free diet may lead to improvements in behavior and physiological symptoms in some children diagnosed with an autism spectrum disorder (ASD), according to researchers at Penn State. The research is the first to use survey data from parents to document the effectiveness of a gluten-free, casein-free diet on children with ASD. Read more. 

Autism support group to reactivate in southern Ocean County (Little Egg Harbor, N.J.)
Families for Autistic Children Education & Support, a nonprofit organization dedicated to education and support of children with autism and their families, will reactivate Sunday in a new location in southern Ocean County. Read more. 

Autism’s angel (The Quinnipiac Chronicle)
When Shannon Fitzmaurice left to study abroad in Rome, she tearfully said goodbye to her parents, and younger brother and sister, Brendan and Meghan. After excitedly counting down the days during winter break of her sophomore year at Quinnipiac, Fitzmaurice realized she would be without her siblings, also two of her best friends, for several months. Read more. 

Special-ed changes upset Riverside parent (The Now)
One Port Coquitlam mom is looking for answers about why her daughter has had nine different special education assistants (SEAs) this school year. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

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‘The Doctors Are In’ Live Chat

February 29, 2012 1 comment

Please join us Thursday at 3 pm ET/noon PT for this month’s “The Doctors Are In” live webchat. Our featured guest will be pediatric dentist José Polido, D.D.S., head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network centers.

Dr. Polido was instrumental in developing the newly released ATN tool kit for dental professionals. He welcomes your questions about dental issues including dental hygiene and visits to the dentist.

The live webchat will be hosted by Autism Speaks Head of Medical Research Joe Horrigan, M.D.

We hope you’ll join us!

What: “The Doctors Are In” webchat, with Drs. Horrigan and Polido
When: March 1 at 3 pm Eastern; 2 pm Central; 1 pm Mountain; noon Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page

Autism in the News – 02.28.12

February 28, 2012 1 comment

Autism detected later in minority children: Study (CBS News)
Autism should be diagnosed as early as possible, but minority children tend to be diagnosed later than white children. New research is beginning to try to uncover why – and to raise awareness of the warning signs so more parents know they can seek help even for a toddler. Read more. 

Responding to Autism in an Emergency (Tolland Patch)
Family Autism Center program consultant and EMT Jason Dorval addressed a crucial emergency need at Tolland High School on Monday night: how first responders can most safely and effectively help citizens who have an autism spectrum disorder. Read more.

Teacher placed on leave in flap over autistic boy’s treatment (Los Angeles Times)
When Kim Rollins’ son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project. Read more.

Training Parents is Good Medicine for Children With Autism Behavior Problems (South Africa)
Children with autism spectrum disorders who also have serious behavioral problems responded better to medication combined with training for their parents than to treatment with medication alone, Yale researchers and their colleagues report in the February issue of Journal of the American Academy of Child & Adolescent Psychiatry. Read more. 

Parent: Worcester teacher training on autistic kids falls short (Ocean City, Md.)
The Meyers family recently put their house in Berlin on the market and are readying for a move to the Baltimore area. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

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