Announcer: This is “Special Needs Long Island,” a radio broadcast dedicated to the special needs community right here, on Long Island.
Bringing you the latest news affecting special needs families, along with information from organizations and professionals practicing in the field of special needs. Now here are your hosts, Jeff Silverman, and Ellen Victor.
Jeff Silverman: Good morning, and welcome to this week’s special needs Long Island radio program, focused on the special needs community. Where we come to you from every Sunday morning from 9:00 to 9:30 on WLIE 540 AM, and on the Internet at wlie540am.com.
Jeff Silverman joined by Ellen Victor. We’re pleased to have a special guest this morning. We’re going to be speaking with Kim Mack Rosenberg, the president of the National Autism Association, the New York Metro Chapter.
Kim, welcome to the show. Tell us a little bit about what it is that you do for the National Autism Association.
Kim Mack Rosenberg: Hi, thank you so much for having me this week. I’m happy to be here. The NAA New York Metro chapter is a local chapter of a national organization called the National Autism Association.
What we do is try to bring a variety of programming, events, and information to families who have individuals with autism in their families as well as to professionals, care givers, teachers, doctors, other therapists who work with children with autism. We provide monthly educational events, usually in Manhattan, sometimes elsewhere, that are free and open to the public.
We have a support group. We actually have a new support group starting in Manhattan hopefully very soon. We have one in Queens right now.
They are professionally run support groups by psychologists who are familiar with children with autism, families on the autism spectrum, and those are to help parents and caregivers deal with issues in a safe place where they can get professional advice and also support from other parents in those groups.
The information for those support groups is on our website. We also have special events for children with autism. This Saturday we have, in Central Park, Eric Chessen, who runs an organization called Autism Fitness, is going to be running an Autism Fitness event for a Saturday afternoon, from 1:00-2:30 in Central Park.
It’s a great chance for kids with autism to learn some of the basic fundamentals of fitness that they may not have developed elsewhere. Those can be building blocks to engage in more complex fitness activities and team sports for those kids.
We also do training with the NYPD to help them and other first responders become aware of issues relating to autism in their line of work. We run a summer program for children on the autism spectrum the last two weeks of August.
It’s completely professionally run and NAA funds that program, keeping it at a very low cost for families of children with autism. It helps fill that gap between the end of extended school year and the beginning of the traditional school year.
Jeff: I see the local chapter, the New York chapter, was formed back in 2008. Have you been involved since then? What was your motivation to get involved in this?
Kim: Yes. I was one of the founding members. I was contacted by another mother that I knew and a grandmother of a child with autism who were interested in forming a local chapter of the national organization. I have a son who is 15 now, and on the autism spectrum.
He was eight years old at the time the chapter was formed. It’s easy to remember how old he is. He was born in 2000. I never have to do the math. He’s done really, really well. We’ve done a great deal of traditional, and some non-traditional, interventions with him that, in combination, have allowed him really tremendous progress from the time he was a toddler, and his developmental issues were identified.
He like many kids on the autism spectrum, is a medically complex child as well. We really used the NAA. I wanted to give back because he was doing well, and share with other families, information that I had learned over the years, things that worked for my family, maybe not for my family, and to bring a wide variety of information to families.
Because there are so many options out there, and that it can be difficult for families to determine what may or may not work for them, what may or may not be appropriate, what they feel comfortable with because what most families feel comfortable with isn’t necessarily what another one does, but most families also don’t even know about how many options are out there, both traditional and alternative, for their children.
Jeff: Do families generally come to you? They find out about you, or are you out there promoting the services. How does a family get involved?
Kim: We do both. We have a lot of people who contact us, both families and we also have a lot of professionals contact us. We often hear from social workers who are looking for help for families with whom they work, both with children and adults with autism.
We’re finding that the adult population and transitioning to adulthood is, as this wave of children with autism continues to age, adult services and adult educational opportunities, adult living, is going to become a much bigger issue. We’re actually doing a series of lectures this winter. We started in September. We’ll continue through at least February, on transitioning to adulthood. That’s our focus for the winter.
Jeff: Yeah. I think that’s just such a key area, because as long as the children are in school, they are getting good services. Everything is taken care of for them, but it’s that big drop off, generally after age 21, when the schools aren’t providing services.
Now, we have so many children becoming young adults on the spectrum, that there’s just such a lack of information on what next. With different cutbacks with government funding at certain things, it’s really something that…Ellen, I see with our practice it’s a big concern of families, what’s going to happen to their children as they become young adults.
Ellen Victor: It is absolutely a huge concern, and given diversely in the autism population and also challenging to work through, and see what’s appropriate and available for your child versus other children.
Everything can range from people who they have services and who may be able to attend college and everything in between, and different levels of support needed for all those various options, as well as financial planning, legal planning, guardianship issue. It’s a very complex issue.
Jeff: Do you have regular meetings for families and for people that are interested?
Kim: We don’t have a regular NAA meeting. What we do are these educational events that are generally held once a month. Sometimes we have special events and we have more. Other times, we may not events end of summer. We often don’t have meetings in July and August, only have something smaller.
We generally have some sort of educational event once a month. We have special events very regularly, like the Fitness event that I spoke about earlier. We sometimes do workshops for families that are longer events. Half a day they workshop on a variety of topics. Then, our support groups meet once a month.
Ellen: That’s in Queens and in Manhattan?
Kim: Yes. We’ve had a management support group for many, many years run by a wonderful psychologist called Coby Quente. She’s moved her practice to Queens, and she is very graciously picked up that support group in Queens.
They are going to start meeting there, and we are hoping to restart the Manhattan support group with a new psychologist beginning in the next month or two. Those are free of charge. We try to keep costs to families at a minimum so that anyone can afford to participate in our events and the costs shouldn’t be a barrier.
Ellen: You need to expand to Long Island.
Kim: We’ve done a couple of things in connection with people out on Long Island. We would love to expand further. It’s always challenging, because we’re an all-volunteer organization, and we rely on donations from the public to run our organization. We’re always looking for volunteers to help us, as well. We would love to expand our reach, absolutely.
Jeff: It’s nice that shows broadcast throughout the New York metro area, so we have pretty far reach. Hopefully, a lot of your families are going to be able to tune in and listen to some of the information that you’re providing.
You’re mentioning that you’re parent-run and you’re self-funded, which probably has certain challenges. What are the major ways that you’re able to raise funds? Is it individual fundraisers or donations that people make?
Kim: It’s a little bit of both. We do generally one or two fundraisers a year. We’ve done different things with them both. We’ve done cocktail parties. We also do individual fundraising they’re giving the first Tuesday today and December, which a lot of organization use to try to raise funds.
We encourage people as a passive means of our raising money. You can support us through Amazon Smile program, which is smile.amazon.com. If you choose the New York Metro Chapter of the National Autism Association that you’re funding, Choice and Amazon donates a percentage of the eligible purchases through that portal to NAA New York Metro. We do rely substantially on individual donations.
Jeff: I know you’re a very busy person, because you have other things that you do. One of the things was that you recently authored a book. You want to speak about that, because I find the information you’re making available is just phenomenal. Tell us a little about the book, and how you’re getting the word out with that?
Kim: I wrote a book that was released this spring, it’s called The Parent’s Autism Sourcebook — a Comprehensive Guide to Screening Treatment Services and Organizations.” What it provides parents is really a couple of things.
There’s a section at the beginning that walks parents through the signs of autism to look for, the diagnosis process and then begins to discuss various treatments and educational options available to families, generally. It’s not targeting any one geographic area.
We wanted to be able to take some of the fear and demystify a little bit the process of identifying potential signs of concern in a toddler, baby a child, how the diagnosis process works, what parents should expect from their pediatrician in screening their children for autism or other possible delays?
Because whether are many, many terrific pediatricians out there. There are some pediatricians who may not be doing the early screening that should be done or possible identifying signs.
If parents are empowered with the knowledge of what to expect, they can take a more active role in making sure that their child is getting an appropriate screening at an early age. Each one of the things that we have found over time is that, early intervention can really be a powerful tool for children with autism.
I like to tell parents that it’s never too late. It doesn’t matter if your child is not a child anymore and if it’s an adult, they can still benefit from various therapies, medical intervention, services that are available.
The younger you start the more plastic your brain is, the easier it is to potentially make changes. We also identify in this book for parents a lot of medical conditions that are seen in many children with autism to get your intestinal issues, immune system dysfunction, and mitochondrial issues.
The parents can also be on the lookout for sometimes of that, and think about testing for some of those things that the scenario of concern for their child is obviously not applicable to every child.
One of the things that make autism so challenging is that everything of autism is different, and every child has different strengths and weaknesses, and may or may not have different medical condition associated with their autism.
Ellen: I don’t think that parents think about medical conditions when you think about autism, that’s great knowledge.
Kim: There have been some studies and a lot of them have total evidence showing that many children with autism, for example, has gastrointestinal issues and then, fortunately, this is the example I still hear often that it breaks my heart every time because in this teenage in New York when I first favored hearing it a decade ago, it was bad.
A decade later, I’m still hearing it from parents is that their children with autism have really severe gastrointestinal issues. They may not be eating well. They may have severe bowel issues. They may have reflux issue and they get written off. If you took a typical child with these issues to the pediatrician, the pediatrician will say, “Oh you know! Yes just definitely it’s not happening with your child. Lots of you were referred to a gastroenterologist.”
Too many parents of autism take their children who are in pain and in distress, and clues having not normal PI issues to the doctor, and they’re told that’s just part of autism. When I hear it in New York it’s not just in outlying areas of the country I heard in New York and other cities, where your medical care should be first grade. It is very frustrating for parents, and it’s obviously not good for the children at all.
Jeff: How could people get a copy of the book?
Kim: It’s available on bookstore, and it’s also available on major retailers like Amazon.com and Barnes & Noble.com.
The other thing that’s in the book is we try to pull together, it’s impossible to catch every organization that’s out there, but we try to get parents a state-by-state guide to some of the services that are available in those state. Some of the page language, OTTT providers, doctors and dentist, hospital, organizations that provide all different kinds of therapeutic interventions, educational interventions, legal help for families.
Identifying local resources that include some resources for readers who are in Canada as well, we strive to provide information all across the spectrum of services and activities that people might be interested in. That include housing it includes recreational activities.
We try to get everyone in each state some resources that they can reach out. We’re fortunate in many respects in New York that there is a wide range of resources, and in many states, there’s very little available and people as much of the struggles as it is for people in New York metro area and it’s still as a great struggle for many families. There are areas of the country where there are fewer resources available to those families.
Jeff: We’re going to take a quick break. We’re going to get back and speak more about the book. We are featuring Kim Mack Rosenberg. We’re going to take a short break on “Special Needs Long Island”. We’ll be right back with you.
Announcer: Special Needs Long Island is a program brought to the community by Attorney Ellen Victor and special care planner Jeff Silverman. It features individuals and organizations making a difference in the special needs for all, and brings you the latest local and national news in the field of special needs.
If you are the parent or guardian of a child or adult with special needs, and need to plan for their future and well being. Ellen and Jeff are available to speak with you as a listener of the show. Whether you have questions about legal issues such as special needs trusts, guardianship and wills or financial issues including SSI, Medicaid or funding the future Ellen and Jeff are here to help you.
They offer a no charge consultation to discuss your personal situation. Please contact Jeff Silverman at 516-682-3363 or Ellen Victor at 516-223-4800 with any questions or just schedule an appointment or by email at [email protected]. Thanks for tuning in every Sunday at 9:00 am. I’m wle540am and wlie540am.com. Now back to today show.
Jeff: We’re back on “Special Needs Long Island” where we’ve been speaking with Kim Mack Rosenberg, the president of the National Autism Association in New York Metro Chapter and also the author of a book “The Parents Autism Source Book”.
Kim, it sounds like you spent a lot of time putting this book together because it has so much information that goes across the entire country. How long did it take to put this book together?
Kim: It took several months and a lot of people working very, very hard. I did the writing for the main text section of the book. A number of people at my editor Skyhorse Publishing helped pulled together, along with myself helped pulled together the resource guide part of the book that’s not something I could have done on my own.
It probably would take in years in some really grateful to the folks at Skyhorse for working so hard, to help pulled together resources that are available nationwide.
Jeff: Any other areas, in particular, initiatives or things that you’re working on in the autism field?
Kim: One of the things that both our local chapter and our national parent, National Autism Association has some working on for the past several years is the issue of “Autism and Wandering”.
Wandering was also known for its elopement is the huge issue in the autism community as well and other community, for example, adults who has Alzheimer’s disease or other forms of dementia may be prone to wandering. They can get lost not know where they are not know how to get home.
What we see with children with autism instead about 30 percent of children with autism wander at some point or another. They can wander into various dangerous situations regardless of whether they’re in an urban area or rural area. They’re really unfortunate in a number of deaths by drowning the children with autism who have wandered.
It can happen in New York City, it can happen in Warren, Missouri. If there’s a body of water around, many children with autism are very attracted to water. We encourage parents for that reason to if all possible get your child swimming lesson so that they may have some self-preservation ability if they are attracted to, and end up in water.
A few years ago we had the tragic loss of Avonte Oquendo in Queens, who wandered away from his school and was later found having passed away as a result of his wandering. He wandered out of his school, and the school didn’t perhaps take the steps necessary to ensure that he be found as quickly as possible.
In New York, you’re challenging too, because a child can easily get on a subway or a bus, and end up somewhere very far from their home. There are devices that parents can use, and a variety of devices available to help track your children.
Everything from, there’s simply, for kids who are able to carry their own telephone and aren’t necessarily going to lose it every other day, you can Find My iPhone to know where your child is.
There are also GPS devices that can go in clothing that children are wearing, so if a child is particularly sensitive to having a wristband on, there are devices that can go in little specially-designed pockets in clothing or in shoes that will help track the child. There are wristband-type devices that can be used as well.
Some of these allow parents to track the child using an iPhone or other type of phone or apps that allow you to track if your child is wearing that particular device.
It can also be very useful to law enforcement if there is a case of wandering. It can help locate the child using tracking information on the device. The sooner that law enforcement is alerted that a child is missing, the sooner they can begin looking and the better the chance of a positive outcome.
Children leave their apartment buildings. They leave their homes. It’s a challenge for parents because you can’t, and it’s very hard to keep your whole home on lockdown.
You obviously can’t lock a child safely in a bedroom at night in case of fire, because then they’re locked into the room. It may sound like a safe option to parents as a way to keep their child safe and in the home. But overall it presents a case of risk if there is a fire or other emergency situation, someone needs to get out of the home quickly.
Ellen: That’s great education so that parents feel as if they have another alternative to having to do that.
Kim: Some parents will say to me, “Well I can put a lock on his door.” I say, “Yes, that keeps him in his room, but it doesn’t necessarily keep him safe in other situations.”
There are inexpensive, that you can pick up at Home Depot or Lowe’s, the ones that can be put on doors and windows, so if a window or a door is disengaged in the middle of the night you hear it. You know that something’s going on and you can move quickly. Those types of devices might be a better option for parents as well.
Jeff: I know there are also certain things, if you have a pool, they have certain alarms now that can be used. But as you were saying, the swimming lessons are a key thing to make anyone comfortable by the water.
Kim: You’re right. There are devices that I think that should be put in swimming pools that will, if no one’s supposed to be using the pool or if there’s a big splash, it sets off an alarm. If a child ends up near a pond or a fountain, there’s actually an incredible amount of water [laughs] in New York City, as I’ve learned.
Obviously, in suburban and less urban areas there are ponds, and rivers, and lakes, and streams all over the place. There’s much more water in New York City than you would think there is, too. [laughs] Not just the rivers around the city but in parks and other places. There are many areas where there’s great concern for those children who are attracted to water.
The children who are attracted to, as many kids with autism are, to trains and to transportation systems present a challenge too. As I mentioned, a child can get on, or an adult, this could happen with someone with Alzheimer’s as well. You go down into the subway or you get onto a bus, and you can end up so far from home so quickly. [laughs]
Ellen: New York can be a scary place if you don’t know your way around.
Kim: In any place, traffic obviously presents a risk too. It doesn’t matter whether you’re in a city, a town, out in the country. Children with autism do not always have the safety awareness of not walking into the street.
Jeff: It’s not just children. There was the situation a couple a weeks back at the New York Marathon. There was a young adult, I think he was 30, from Italy, who had some type of disability, I think a mental disability. He wandered after the race. For two, three days he was wandering the city.
It happens on so many different levels that it’s such a key thing to look at. Have you found, since the tragedy in the city a couple years ago that the schools have stepped up their efforts, or are they doing things how they were doing them?
Kim: I think there are real efforts under way to make changes in the schools and figure out the best way to handle the situation. It is a complex situation. But changes need to be made, especially in the public schools where they’re trying to serve such a large population of children with autism now, to understand what might work.
There has been talk about installing alarms in the schools. Then there’s some concern raised that, the alarms are sounding, that some children who have a lot of sensory sensitivities, may be upset and dysregulated by the alarm. There’s the task of balancing whether some children may be dysregulated by an alarm, versus signal potentially saving the life of a child who left the school.
All that needs to be looked at. I know that New York City is looking at it. City council has proposed legislation. I’ve testified before some divisions of New York City council on these issues. There’s definite concern. They recognize that it’s a real issue. It’s terribly unfortunate that it took a tragedy like that to bring it to light.
But you’re right, it’s not just children for whom this is an important issue. We talked about the aging part of the school age for people with autism, and it becomes a real concern for families. If you have a young adult or an adult at home with autism, and particularly if you have aging parents that may present wandering challenges as well, depending on the level of caregiver services that family’s able to have in the home.
It becomes more challenging as parents become older and maybe less physically able to chase down an adult who’s wandered, and is maybe moving at a much quicker pace than the parents can move. It’s an issue for all ages.
Jeff: That’s all good stuff. Really appreciate you coming on today and going over some of things that you’re doing, some of the great work that you’re doing. I want to reach out and give the audience your website information for more information.
Kim: It’s nationalautismny.org.
Jeff: Can you repeat that one more time?
Kim: Sure. It’s nationalautismny.org.
Jeff: Thanks so much for the information and for coming on, specially. It’s Long Island, where we’re on every Sunday morning from 9:00 to 9:30 on 540 AM WLIE. We’ll be right back to you next Sunday.
Announcer: You’ve been listening to Special Needs Long Island on 540 AM WLIE. Join us next week as we bring you more important information for the special needs community.
For questions, please contact Jeff Silverman, director of Special Needs Planning for the Center for Wealth Preservation at 516-682-3363 or Ellen Victor, Esquire, a special needs attorney, at 516-223-4800 with any questions. “Special Needs Long Island,” every Sunday at 9:00 am right here on 540 AM WLIE.