Candlelight Speech by Susan E. Raitt

Candlelight Speech 042209 Final

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Candlelight Speech by Kim Mack Rosenberg

Thank you, Dara.

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 – 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 – 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 — 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. I

t 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.

Candlelight Speech by Dara Berger

Good evening everyone.
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 tonight'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 conversation 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 perspective. 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 tonight. 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 different groups of people affected by Autism.

Candlelight Speech by Khalid Rehman

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 at the first candle lighting ceremony to celebrate the Autism Awareness Month at the steps of the city hall. As you all know, April is designated as the Autism Awareness month all over the world and April 2nd as the International Autism Awareness Day.

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 my Councilman Daniel Garodnick and his office staff for helping us organizes the First Annual Autism Awareness event at the City hall.

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 that estimate is at least 5 years old.

Autism is a major health care problem that has serious social, health related, financial and emotional impact it has on the lives of millions of such families. Yet not many people know about this.

Let me use HIV-AIDS as an example. Almost everyone has heard about HIV AIDS. Almost every day some prominent elected official, current and past United States Presidents, Senators, 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. On Monday 20th April 2009, The New York Times devoted its Editorial space to HIV AIDS and called it “A Real Problem”.

Now let me ask you! How many elected officials and celebrities that you know are talking about Autism? How many people are raising the concerns about an epidemic that affects 2.3 million people? That is 5 times as many as HIV AIDS.? Not many. That is why we are having this event. We need to increase the awareness about this epidemic that is threatening one in every 150 children and 1 in every 90 young boys in the world.

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. We must provide resources for early education and therapies and provide adequate health insurance to care for those affected.

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.

Until a cure is found, we must protect our 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 New York Metro Chapter of the National Autism Association 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.