Speeches from the Candle Lighting Ceremony for Autism Awareness Month on April 22 2009

Dara Berger: Opening Statements

The first thing I would like to do is welcome you all to NAA's very first Candle Lighting Ceremony for Autism Awareness Month. My name is Dara Berger and I am your host for this evening's event. Just to tell you a little bit about me, I am a resident of Manhattan, I chair the parent mentoring committee for the National Autism Association NY Metro Chapter which you will hear about from our first speaker. But the most important and meaningful thing you could know about me is that I am the mother of child who has Autism and his name is Dylan.

Our main goal of tonite's event is to raise awareness about the growing problem of Autism. So I would like to share with you a few ways in which Autism effect's my life. For one, I wake up every morning with a broken heart for what my son and family have to go through. He is such a bright kid, but he cannot speak. No matter how rested I am in the morning, I have to go into my bathroom and give myself a little pep talk to start another day because he needs me to be strong and he needs me to keep fighting for him. Fight for his recovery. Yes, I did say recovery, because we know some children can recover...not all do. But many make great progress everyday.

Autism is such a complicated disorder. I would need at least 20 hours up here to give you a full picture of what my family goes through on a daily basis. Unfortunately many of you hear today do have a clear understanding. For one I cannot bring my son anywhere I want. A simple trip to the grocery store can send me into tears if I happen to witness another parent and child simply having a converstation with one another-something I cannot do with my son. I have gotten pretty good at holding back the tears at least until I get into the hallway of my building. Those are some things you might not have known about Autism.

Luckily for all the very difficult experiences we go through everyday there are some equally beautiful ones. You can easily get swept up into a world with some of the most nurturing and selfless people you will ever meet. I have never met a group of parents more passionate and giving then the parents of children with special needs. It changes your whole being....you being to appreciate the really small things and you put what's really important in perspecitve. I am not and will never be the same person I was before Autism. Between you and I ...I like this person a lot better anyway.. The therapists, doctors, nutritionist and holistic practioners ...they never give up on the hope of recovery and they never give up on our kids. They are and will always be my true heroes.

For along time I was afraid for people to know about my son, unfortunately there is a very big stigma attached to Autism. I am no longer afraid. I stand before you today proud of my battle wounds proud of my families fight for my son Dylan and proud to be a member of this incredibly supportive community of people.

Now I want to let you know that we have a very special program for you tonite. Some parentes will come up hear to share their own experience each of them will be very different, since no child or family is affected in the very same. If there are any council members here that would like to say a few words than we would like to give them a chance to speak to you. And then we will light five candles to honor the differnt groups of people affected by Autism.

Kim Mack Rosenberg

As Dara said, my name is Kim Mack Rosenberg. I would like to welcome all of you here both personally and on behalf of the New York Metro Chapter of the National Autism Association. Our president Sabeeha Rehman would normally be delivering these remarks however she is out of the country. She is with us in spirit and sends her thanks to all of you for coming out to honor our children.

For those of you not familiar with us, our chapter is a non-profit, all-volunteer organization that serves New York and the surrounding counties. We have been in existence about a year and have accomplished much in that time. I just wanted to quickly tell you about some of what we do. Information about our programs and events is on our website at www.naanyc.org -- and you can link to our blog from there as well.

First and foremost, we are here to serve and support families who are affected by autism. To do so, we strive to bring families information on a wide variety of topics -- some traditional and some more cutting edge.

We hold monthly educational sessions and we have attracted wonderful local as well as national speakers on a variety of topics Ð everything from homeopathy to special needs financial planning.

We also hold monthly Parent Network Exchange Meetings, which are less formal and are more like moderated discussion groups Ð usually led by a professional on whatever that month's chosen topic is. These meetings have covered everything from nutrition to tax issues.

We have a free parent mentoring program where we strive to connect families in need with a parent who is suited best to helping them.

We will be hosting a family fun day at Muskoot Farms in Westchester on May 30. Information is on our website and this will be a great day with lots of activities planned for children with special needs as well as for their siblings.

Like last year, this October we will again co-host a 2 day autism conference with an exciting line up of nationally-renowned speakers.

I am very proud to be a part of this organization and honored to work closely with the parents, grandparents and professionals who are involved. It is a labor of love for each of us. I do this for my son Henry who, while he still has many struggles ahead, has made great progress. We work hard every day to ensure that Henry is getting the appropriate interventions.

Just this Sunday in the New York Times, there was an article about a family struggling to find an appropriate educational placement for their daughter and struggling with the tremendous cost of the appropriate placement they found. The final sentence of that article struck home with me and I would like to share it with you all -- I am guessing it will resonate with each of you as well. Ruby's mom said: "When you have a child like Ruby, you realize how much of a role you have to play in that outcome, how involved you have to be to affect that outcome Ñ especially early on, when the stakes are so very high."

We are here tonight because we recognize that we must each be our child's staunchest advocate to ensure that they have the brightest futures possible. We all look for appropriate educational interventions, therapies, social skills groups, activities, medical care, and, for many, biomedical or alternative treatments. We look for teachers, doctors and therapists who recognize the tremendous potential within each of our children. One of the challenges we face as parents of children on the spectrum is that each child on the spectrum is unique in both their gifts and their challenges. This puts new burdens on us as parents as well as on the professionals who teach and treat our children, but there are many many people out there truly dedicated to helping our children. It is our job as parents -- though it is not always an easy one -- to find and fight for those programs and people who are the right fit for each child's unique needs.

Even though our paths may be different, each of us has the best interests of our children at heart and, at bottom, that is the most important thing. If we look hard, I am sure we will see that there is more common ground among us than not and I urge us all -- starting today -- to stand together on that common ground, for the sake of our children. Thank you.

Susan E. Raitt

Our stories have many similarities. A lot of them start out as follows: We are ecstatic about a new addition to our family. Our baby is happy and is progressing normally. We imagine a future marked by the signposts we're accustomed to: school, first love, perhaps marriage, maybe grandchildren. In these moments of joy, the future seems predictably bright.

But at about 18 to 20 months, something goes off course. Our child begins to. . . regress. . . lose words. . . and stop pointing. She no longer. . . looks at us. And she goes off into her own little world. Suddenly, we don't have any idea what the future holds.

This is what happened with our family - with our dark-eyed, beautiful Ana.

While many of our stories have similarities, each has its own wrinkle. For us, the wrinkle was September 11, 2001. On that day, I had been pregnant with Ana for just over eight months. At 8:30 that morning, I got on the subway in Long Island City to go to my 9 o'clock doctor's appointment, right outside of World Trade Center. Luckily for us, I got on the wrong train. One that took me just far enough away from the horror surrounding World Trade Center.

But when the details began coming in, my water broke. And as I rode in a cab going back to Queens, I went into shock as I saw one tower remaining in the swirling smoke. Ana was born a few days after that initial shock. . . and, despite (or perhaps because of) the tumultuous times, there was elation over her arrival. But that ultimately gave way to . . . puzzlement, followed by grave concern. . . and the shocks just kept coming.

We all have horror stories about trying everything to get a diagnosis . . . and then, after getting the diagnosis, trying everything to find the cause. . . and then, after determining it could be one of many things, or a combination of things, trying to find a cure. The diagnosis: Autism Spectrum Disorder. The cause: well, for us, there was the initial psychological stress of going through the 9-11 experience. But there is also an environmental component: Ana has high levels of heavy metals in her system. And the cure: well, thankfully now there are many treatments that can help our children on a variety of levels.

Is any one of them alone enough? Rarely. While some of our kids are recovering (thank God!), to save the futures of our other precious children, we are constantly seeking - reading, researching, investigating, and TRYING. With our hopes and fears going up and down like a rollercoaster ride, it wears on our patience, our finances, our families, our lives. None of this should be happening. It's simply not fair. It is not fair that our children are going through all of this. It is not fair that the families - parents, siblings, grand parents - are suffering in so many ways.

Given this, it is imperative that each of us use our talents to help do everything possible to recover our children. We need each other. We derive strength from each other. And we are becoming effective because of each other.

More than 40 years ago, Robert F. Kennedy spoke the following words as he tried to mobilize us in the fight against poverty: "Each time a person stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, these ripples build a current that can sweep down the mightiest walls of oppression and resistance."

These words resonate with us, as we unite in the fight against autism. While in our case, the ripples often originate as tears, we need to send forth as many ripples as we can. The important thing is that they begin. To borrow a phrase from the Obama campaign, that's when change happens.

Let's put a bright spotlight on all of those tears that have turned into action. Let's be grateful for those family members and others who have supported us with their prayers, helped us do research, held fundraisers for us, and have formed support groups (such as those up in Westchester) and organizations (such as the NAA) to educate and support us. Let's salute doctors who have learned how to recognize the signs of Autism and who are coming up with ways to treat our kids. Let's celebrate researchers who are out in the forefront looking not just at genetic causes, but environmental triggers as well. Let's be thankful for those therapists and teachers who are attempting to reach our kids and effectively work with and educate them. Let's recognize school chancellors, mayors, and governors who are coming on board to ensure that appropriate programs are put in place for these kids - programs that are not just band-aids but initiatives that can truly help these youngsters become independently-functioning adults. Let's pray that they and insurance companies step up to the plate and pay for treatments that have been shown to help many of our children. And finally, let's give a hand to parents, lobbyists, lawyers, and congress people who are working to pass laws to ensure that all of this occurs.

All we want is the possibility of a better future for our kids - a brighter and, yes, in some ways more mundane future. We're looking forward to the day when that doesn't seem like so very much to ask.

Khalid Rehman Chair, Advocacy Committee, NAA NY Metro Chapter A practicing physician and a grandfather of boy with Autism

Thank you for joining us this evening.

I also want to thank the advocacy committee members, particularly Dara Berger, Kim Mack Rosenberg and Lisa Rudley for making this event possible.

I also want to extend appreciation and gratitude to Councilman Garodnick and his office staff for helping us organize the Ist Annual Autism Awareness event at the City hall.

Thank you.

Autism is an epidemic and the number of children affected by it is ever increasing. Some years ago, the CDC estimated that 1:150 individuals or about 2.3 million individuals are affected by Autism. We are sure that the number has now increased since those figures were put out.

Autism is a major health care problem and yet not many people in this country know the serious social, health related, financial and emotional impact this disorder has on the lives of millions of such families.

If I may, I would like to use a common disease as an example to understand how great the Autism problem is.

Almost everyone has heard about HIV AIDS. Almost every day some prominent elected official, current and past U presidents, actors and celebrities tell us about HIV AIDS and its deadly impact on our society. The CDC estimated that there were 468,000 individuals with HIV AIDS in the USA in 2007

We all know that HIV AIDs is a serious public health issue. The NY Times devoted its Editorial on Monday 4/20/09 to HIV AIDS and labeled it "A Real Problem".

How many people , elected officials and celebrities know about and talk about Autism that has affected 2.3 million people or 5 times as many as HIV AIDS.?

We are loosing a whole generation of children to the Autism disorders. That is 2.3 million children and counting. That is the REAL problem and we need to increase the awareness about that.

The society at large, our elected officials and the educators must recognize that this is a real epidemic and must act together to combat it.

We must increase funding for research.

Today is EARTH DAY. We must clean up the environment. We must remove the toxic substances from our soil, air, food, drugs and vaccines. We must eliminate discrimination towards the disabled. We must eliminate abuse in the residential facilities. We must invest in early detection and early intervention.

Until a cure is found, we must protect affected children from harm, offer them the best individualized education and behavioral therapies in order to optimize their best potential.

The Advocacy Committee in particular and the NY Metro Chapter of the NAA in general are dedicated and committed to be the voice of these children and speak on their behalf till they are able to speak for themselves.