Autism Dance Program in Haddonfield

LOCAL NON-PROFIT NEURABILITIES DANCE PROGRAM FEATURED IN THE HADDONFIELD SUN NEWSPAPER!

Reprinted courtesy of The Haddonfield Sun, author Jack Tomczuk, Original Article Link>>>

 

Ballroom dancing provides physical, mental and social benefits for participants, organizers say…

 

Sean Keane looks forward to coming to Grace Church in Haddonfield every Tuesday for his dance class.

The 20-year-old from Marlton is one of about nine young adults with autism who attend free weekly ballroom dancing lessons as part of a new program sponsored by the nonprofit Dance Haddonfield.

Sean’s mother, Amanda Keane, likes the program because it is geared toward young adults. Most of the activities for people with intellectual disabilities are for children, she said.

“He doesn’t feel like he’s a small child when he comes here,” Amanda Keane said.

“Every week he’s excited and looking forward to his dance class,” she added. “So that’s a success to us.”

Joe Murphy, of Dance Haddonfield, helped organize the program. He said he read about the benefits of ballroom dancing for people with autism and wanted to set up a program in the borough.

The classes have been successful and popular through nine weeks, Murphy said. Initially, there were six young people registered for the lessons. That number soon grew to nine, and Dance Haddonfield recently decided to extend the program from 10 weeks to 12 weeks, he said.

Murphy said ballroom dancing is a physical and mental exercise for people with or without disabilities. For people with autism, who often struggle to communicate, there is also a social aspect, he said.

“They’ve been able to interact with each other,” Murphy said. “They get the opportunity to do this together, to enjoy it together.”

Young adults with autism participate in a dance class Tuesday, July 31, at Grace Church in Haddonfield.
Will McAnurn, 18, of Haddonfield, has participated in a couple of the sessions and said it has been an enjoyable experience.

“It’s fun,” he said. “It’s nice to be here. I’m glad to make new friends.”

Participants in the program have been learning several varieties of dance, including the fox trot, tango, meringue and hustle.

“Sometimes, it still takes me a bit, but I’m getting the hang of it,” McAnurn said.

Murphy said many of the students in the class are affiliated with NeurAbilities, a Voorhees-based nonprofit that supports people with intellectual disabilities through art and culture.

Grace Church donated the space, and M&T Bank provided a $1,000 grant to help pay for professional dance instructor Gene LaPierre.

LaPierre, who is contributing his salary to his own dance-related charity, said the 45-minute sessions help the young adults with autism in a variety of ways.

“I believe it works on their balance and their gait,” he said. “It’s also working on camaraderie and social skills.”

Teaching the group at Grace Church is not that much different than leading a class for beginners without disabilities, LaPierre said.

“It’s hard for everyone,” he explained. “Everybody’s ability when they begin is the same because you’re doing something brand new that you’ve never done before.”

“They’re in time with that music,” LaPierre added after a recent class. “Whether it’s the tango or the fox trot, they’re all doing it.”

A group of students and volunteers pose for a picture Tuesday, July 31, after a dance class for young adults for autism.
Murphy said Dance Haddonfield is interested in continuing the classes after the 12-week program concludes later this month.

Amanda Keane said her son Sean would come back for more classes.

“We’re hoping that it continues, and he can continue coming to this in the fall,” she said.

Kean would like to see more activities developed in South Jersey for adults with intellectual disabilities.

“These kids grow up, and they need things to do,” she said.

For more information about the dance classes, contact Joe Murphy at jemurphy5730@gmail.com.

Autism and Genetic Testing: Contributing to Improved Patient Outcomes

In this WEBINAR VIDEO RECORDING, Dr. Richard G. Boles will emphasize how genetic testing can contribute to improved patient outcomes. Specifically, he will explore the connection between autism and mitochondria, the benefits of a “mitochondrial cocktail”, the use of folate/folinate, B12, and other “methylation” factors in autism, genetics and nutrition.

Dr. Boles is the now developing an innovative NeuroGenomics programs here at CNNH. This program provides peer-to-peer genetic consultation services for the primary care providers of patients as well as advanced genomic counseling for our patients. Learn more about the CNNH NeuroGenomics program.

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Autism and Understanding Genetic Testing

In this Webinar recording, Dr. Richard Boles, international expert in genetics and mitochondrial medicine, provides an overview of genetic testing, with a focus on autism. Specifically, Dr. Boles reviews the causes of autism, what genetic testing is available, what genetic testing will reveal about a patient and who can translate the testing results.

Dr. Boles is the now developing an innovative NeuroGenomics programs here at CNNH. This program provides peer-to-peer genetic consultation services for the primary care providers of patients as well as advanced genomic counseling for our patients. Learn more about the CNNH NeuroGenomics program.

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Identifying Autism in Early Childhood

WEBINAR VIDEO RECORDING

This presentation will educate viewers on early red flags of ASD, the importance of early detection, screening tools, and what to expect from an initial evaluation.

Presented by: Elizabeth McHugh, PhD, Neuropsychology Postdoctoral Fellow at CNNH

“Wisdom from Wall” is a Webinar series presented by our clinicians at the CNNH – Wall Township office in an effort to showcase the wonderful staff we have working at that location.

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Autism Doesn’t Stop High School Swimmer

We at CNNH are always happy and proud to hear about our patients making a “splash” out in the community!

Article Excerpts Courtesy of Glory Days Magazine – READ FULL ARTICLE HERE

By DAVE O’SULLIVAN- sully@acglorydays.com; on Twitter @GDsullsays

Staff Writer, OCEAN CITY —

…Despite all that, Absegami stole the show. Well, one swimmer in particular did.

Braves senior Stanley Adams has autism and had never gotten the chance to compete in a high school meet before. He only began swimming about a year ago, in a special program hosted by Brigantine Aquatic Center’s Sari Carroll, and when he first started, Carroll said he needed six flotation devices just to avoid sinking to the bottom of the pool.

But a year later, Stanley, 17, got the star treatment, even after he inadvertently false-started. He competed in the 50 freestyle event, and finished nearly 40 seconds behind DiMartino, who won the race in 26.47 seconds. But both benches cheered as loud as they could the entire time he was in the water, and as he emerged, he was mobbed by his Absegami teammates. Even Ocean City assistant coach Abby LaTorre said after the meet that she was brought to tears while watching the race unfold.

“We all almost started crying, and I’m pretty sure Sari did. He’s so hard working and never gives up. He always shows up to practice. Even when he false-started, he didn’t give up. He’s so sweet. This is the first time he’s gotten a chance to race in a meet. If he was nervous, he didn’t show it. He was so enthusiastic,” said Absegami senior Angela Zhang, who helps Stanley get on and off the bus when the Braves travel to away meets. “I’m so happy that he got the opportunity to do something like this. Not a lot of kids would do what he did and step up, and open a path for a lot of other kids. I really admire him. He’s really brave.”

“He’s been swimming with me for a year now. The first day he came in was really challenging, but working with him and his mom has been spectacular. We’ve been trying and trying, and Jim gave him a chance,” Carroll said. “We have an autistic program at Brigantine Aquatics and 16 kids have gone through it with us. He was in six floatation devices a year ago at this time, so it was really exciting to see him out there today. We weren’t sure if he was going to put his feet down or not. He can do his arms and his legs, but he’s really just starting to put it all together. But he’s exceeded my expectations.”

Carroll helped Stanley onto the blocks for the 50 free, and normally there is a command from the official to take your mark, then a horn sounds to start the race. Occasionally, the head official has to blow a whistle to quiet the crowd so the swimmers can hear the horn. The official blew his whistle, and Stanley thought that meant the race had started, so he leaped enthusiastically into the pool. Even that little mishap didn’t deter him, as he did the same thing when the horn blew for real the second time, and churned his arms and legs until he finished in a little more than a minute.

“I wasn’t nervous at all. When I got on the block, I wasn’t nervous. I just had to keep my head above the water. This makes me feel proud of myself,” he said. “I thought about this a lot at school. It was cool. It’s cool to swim for Absegami. I’ve been practicing. I practiced for this race for 100 minutes.”

“If you’ve never done it before, I’ve seen a lot of kids, they hear that whistle and they go. I probably should have said something to the officials beforehand, but the sportsmanship of Ocean City and all the officials was exceptional today,” said Absegami coach Jim Winkler.

Winkler said early in the season he planned to get Stanley into a varsity meet as soon as he felt he was ready, and Winkler said the Ocean City coaches were, of course, on board with the decision. It’s a teaching moment for all the athletes involved.

“We all love having Stan here. He’s proud of everybody, he cheers on everybody. And we’re really proud of him, he’s been working really hard and we appreciate having him here. He has the biggest smile on his face every day, no matter what, and he brings a smile to my whole team. It’s awesome having him here,” Winkler said. “They get to see — even the best kids, they are used to their clubs teams where it’s all very serious — but high school sports is about so much more. This is what it’s all about for me.”

Winkler said he nearly missed out on the impact of the moment, as he was trying feverishly to capture the race on video with his phone.

“It was really great. I told so many people about it. I was actually trying to video it for myself, and luckily at the end I looked around a little bit — I didn’t realize, because I was so focused on him — just how many people in this building were into it,” Winkler said. “There had to be 150 people standing and cheering for him, and I was so zoned in on him, I didn’t realize it until the race was over. It was really cool.”

What made the day even more special was that Stanley’s younger brother and his mother were on hand, as were some of his teachers, and former teachers.

“That’s what it’s all about. Kids with special needs are going to act like everybody else and follow what everyone else does. They don’t even realize what’s happening, but for his brother and mother to be here, and a lot of his teachers came, teachers from his past came to see him — so it’s a special moment for everybody who works with kids like him. It’s always a team effort when it comes to teaching kids with special needs,” Winkler said.

In the grand scheme of the season, Wednesday afternoon’s meet won’t mean much as far as records or playoff seedings, or power points, or anything like that. But to those involved, it’s a moment they won’t soon forget.

“I’ve been doing this for 25 years, and today was such a special day. It’s really nice. I’ll tell you something, the Absegami kids have been so accepting of him. They’ve been amazing. They are a small group of kids, but they have gigantic hearts, and it was nice to see. It makes it all worth it,” Carroll said. “We work with Faces4Autism (a support group in Egg Harbor Township), and they have a water safety program. We’ve had 16 kids go through it, but Stan is special to me because he wasn’t safe in the water (when he started). I still can’t believe this happened. It’s been a great day. I’ve been doing this a long time and have done a lot of different things with swimming, and today was special.”

Understanding Autism – A Historical Perspective

This article was published in the Indian Journal of Pediatrics…

CLICK HERE TO READ THE FULL ARTICLE >>>

Abstract:
The study of the evolution in the diagnosis and treatment of autism is a lesson in the dangers of medical beliefs or doctrines that are not grounded in medical science. The early descriptions of autism suggested that it was the result of childhood psychoses or psychodynamic disturbances of parent-child relationships. This flawed conceptualization of autism spectrum disorders (ASD) gave way to advances in medical science, which have established ASD as a neurobiological disorder of early brain development. There are many genetic, epigenetic, metabolic, hormonal, immunological, neuroanatomical and neurophysiological etiologies of ASD, as well as an array of gastrointestinal and other systemic co- morbid disorders. Thus, ASD are a biologically heterogeneous population with extensive neurodiversity. Early identification and understanding of ASD is crucial; interventions at younger ages are associated with improved outcomes. The advent of understanding the biological sub-phenotypes of ASD, along with targeted medical therapies, coupled with a multimodal therapeutic approach that encompasses behavioral, educational, social, speech, occupational, creative arts, and other forms of therapies has created a new and exciting era for individuals with ASD and their families: personalized and precision medical care based upon underlying biological sub-phenotypes and clinical profiles. For many individuals and their families dealing with the scourge of autism, their long and frustrating diagnostic journey is beginning to come to an end, with a hope for improved outcomes and quality of life.

By Mark Mintz

CRCNJ Takes Part in New Enzyme Treatment for Autism

Courtesy of NJ.COM…
njarticleauthor

Could a dose of an enzyme, administered through food by the use of “sprinkles,” help reduce the symptoms of autism?

That possibility is being investigated in a clinical trial at two New Jersey locations. Both are looking for children ages 3 to 8 to be study participants.

The drug, called blüm, is based on research that showed children with autism often have a shortage of certain enzymes that result in the inability to digest protein.

That in turn affects the availability of amino acids, which are essential for brain function.

“There’s a growing body of research on the links between the gut and the brain, so there seems to be some connections there,” said Mark Mintz, the pediatrician running the study site at the Clinical Research Center of New Jersey, in Voorhees.

A second study site is in Toms River, at Children’s Specialized Hospital research center.

The goal of the treatment is to reduce irritability, agitation, and hyperactivity among the children who participate. A secondary effect might be to produce some improvement in social interaction, Mintz said.

The substance under study is a biologic, an enzyme instead of a drug. That means it’s comparable to Lactaid, the commercial product containing the lactase enzyme that people with lactose intolerance are lacking.

The study is a Phase III Food and Drug Administration clinical trial, which means the medicine has already proved to be safe.

This newest round of research is one in which some of the children will receive the medicine, while others will receive a placebo, or inert substance. Neither the researchers nor the parents will know which children got the drug until the study is concluded.

The biologic will be administered in the form of “sprinkles” that are put atop food. Parents will have to keep logs of a child’s behavior, and bring in a stool sample once a month.

The study lasts for 14 weeks and participation is free. Participants can also get reimbursed for travel costs as well.

Children will have an initial behavioral assessment to determine if they qualify. Mintz said in general the study is looking for children who have moderate-to-severe autism who are either non-verbal or minimally verbal, or who are already receiving services for their diagnosis.

The study, now beginning at 25 sites nationally, is being run by the biologic’s developer, Curemark, a drug research and development company.

At this time, it is limited to children ages 3 through 8.

“If you’re going to make a change in autism, it’s better to start earlier,” Mintz said.

Kathleen O’Brien may be reached at kobrien@njadvancemedia.com. Follow her on Twitter @OBrienLedger. Find NJ.com on Facebook.

Keeping It Together When Faced With an Autism Diagnosis

As seen on Autism Spectrum News Summer 2016 Edition (page 25) >

Your child has been diagnosed with Autism… now what?
Many parents feel as though they are finally able to answer some of the questions they have had regarding their child, but still feel confused, overwhelmed, and frightened about what to do next. Parents are their child’s best advocate and have the right to be fully informed of what the appropriate next steps are.

Next steps can be confusing and overwhelming when presented with a variety of approaches that have been found useful in treating individuals with an autism diagnosis. Parents may be faced with various recommendations, such as ABA therapy, speech therapy, feeding specialists, neurologists, etc. However, being unfamiliar with these areas of treatment, where they are located, and who should provide each service, can be daunting to a family with a newly diagnosed child. It is common for families to be given a list (aka “the list”) of resources that they can independently reach out to. However, scheduling the appropriate evaluations can be time consuming, intimidating, and, sometimes, defeating. In addition to seeking out and understanding treatment, medical insurance is a key factor in this equation. This is a significant consideration when attempting to get treatment services for your child or family member.

Upon receiving “the list,” how does one go about identifying appropriate service providers who are ethical, effective, and within a reasonable proximity to their home? Often times, parents share they will “Google” treatment providers, seek out feedback from other parents, or use various online “medical” resources that can be found on the internet. We advise our families and families reading this article to reach out to resources, which can provide information that is both ethically sound and legally correct. In the state of New Jersey, for example, we often utilize the following parent advocacy groups SPAN (Statewide Parent Advocacy Network – http://www.spanadvocacy.org), FACES 4 Autism (http://faces4autism.org), a support network for families with autism, Autism New Jersey, and Autism Speaks. Each of these resources have clinicians, volunteers, and team members who are well versed in the diagnosis of Autism and who can assist in the process of attaining ethical and effective treatment.

Sometimes, having a diagnosis and knowing where to seek out ethical and effective treatment can bring relief. Along with relief, diagnosis coupled with where to attain treatment can bring awareness to matters that were questionable. A diagnosis can lead parents to an appropriate treatment plan. This treatment plan may begin as young birth through the 3 months and continue on through the school age years.
The act known as IDEA (Individuals with Disabilities Education Act) was initially developed in 1975 to ensure free and appropriate education for children with disabilities and is federal law. The act was revised in 2006 to include Part B covering school-aged children through adults up to age 22 years. IDEA was revised a second time in 2011 to include Part C covering infants and toddlers through three years of age.

In short, IDEA, Part B provides parents with their rights as the parent of a child with special needs to be informed of and included in the evaluation of their child, academic placement of their child, and meetings regarding their child’s progress and development. Part B indicates parental consent is required in order for services to be offered, maintained, or stopped. IDEA, Part C states families of children with developmental disabilities are entitled to an evaluation to determine eligibility for an individualized family support plan (IFSP) as well as early intervention services that include a variety of developmental goals for their child including but not limited to communication, fine/gross motor, and self help. Additional information on IDEA may found at http://idea.ed.gov

Outside of IDEA families may require private services in the form of ABA therapy, speech therapy, physical therapy, or occupational therapy where insurance may or may not be utilized or the treatment may fall under the category of a “non-covered service”. Related services for individuals with an autism diagnosis are often conducted on a weekly basis. In turn from week to week families may be facing high co-pays, high deductibles, or costly self-pay fee schedules. Parents are often paying hundreds, even thousands of dollars, for services with providers whom they trust or to wait for appointments through their in-network provider, which may have providers that are not as experienced or have the rapport with the child. It is not uncommon for families to share with us they have experienced sleepless nights worrying about receiving appropriate and effective treatment and covering the cost of these therapies.

Families should contact their health insurance companies and speak with a representative knowledgeable about their particular plan, as well as the services the insurance offers for the specific diagnosis. Families are also encouraged to reach out to the billing department in the organization where their child is receiving treatment, as these individuals may have contacts within the designated insurance company who can efficiently assist with the process. Families can also independently contact board certified clinicians at the BACB (Behavior Analysis Certification Board) via the board ] website www.BACB.com. The site lists credentialed clinicians, their contact information, and their location. Families can search by clinician name, zip code, state, or country and inquire as to what costs for ABA therapy are, as well as, if they are covered by insurance.

Once a provider is located, families are encouraged to ask the clinician/team about his/her experience, as not all individuals credentialed in ABA or other related services have the same experience or specialties. Parents are encouraged to convey concerns to the therapist and be an active member of the child’s treatment team.

The writers of this article are Board Certified Behavior Analysts and would like to dedicate this section to helping parents know what to look for in order to create a successful ABA therapy environment. Parents please be sure the following are including in your child’s ABA therapy program:
• A positive rapport between your child, you, and their therapist.
• Time for “work” and time for “play.” Discrete trials should not make up the entire child’s programming. Children with autism require so much more, such as development of appropriate leisure skills, appropriately playing and interacting with family members, and successfully completing community outings.
• Observation of your child’s sessions with the therapist. This is an opportunity to see how your child interacts with the therapist and an opportunity for you to observe the therapist in order to generalize these skills across settings.
• Organized program goals, data collection to document goals, plans, behavior information, etc.
• Regular meetings (monthly, bi-monthly) with the therapist to review analyzed data and gain an understanding of what that data means for treatment and program implementation.

When a family is given a diagnosis of autism or other developmental delay, the individual(s) with the diagnosis often requires an abundance of care and attention.
This can leave little time to spend with other family members such as other children or significant others. Parents often wonder where they will find the time and patience for others. The ability to be flexible is a valuable skill. This means one parent must be prepared to leave an event while the other stays with the rest of the family, setting aside specific days and times to spend with other children in the family, setting aside time for yourself, designating time for you and your significant other, and being proactive to prevent maladaptive behavior from occurring.

Parents also shared having family and friends close by can be a great resource. One parent expressed, “If you’re lucky enough to have family close by, ask for help.” Having a family member come over might allow you to get your household in order, run errands, or even socialize with your spouse or friends. If other family members do not reside locally, ask a friend or neighbor. Accepting the help and not making additional work for yourself is also important. For instance, do not clean up your house just because you asked a neighbor to watch the children while you run to the food store; run to the food store because the house will still be standing when you return home.

Parents also expressed significant concern for their children with special needs for when their children become adults there is no longer a guardian to care for them. Some of the parents we spoke with in preparing for this article are parents of non-verbal children or parents of children with limited cognitive abilities. Parents expressed fears of their child being taken advantage of, getting hurt, or simply not having their day-to-day needs met properly in way that maintains their integrity. Preparation for the future was emphasized. Parents shared while it is “unsettling” and “scary” to think about, preparations such as guardianship and wills should be prepared even when the child is young. This is one way to assist in ensuring your child’s needs can be met to the best of your ability when you as the parent are no longer here to meet them.

This article has discussed quite a bit about therapies and services for individuals with Autism or other developmental disabilities. However, we also want to emphasize the importance of allowing time for yourself and your family outside of therapies. It is easy to get caught up in and focus solely on your child receiving as many therapeutic services as possible. Receiving appropriate and good quality services regularly is important. That said, it is important to maintain balance and understand quality of life for all family members is equally as important.

References
Celiberti, D., Buchanan, S., Bleecker, F., Kreiss, D., & Rosenfeld, D.(2004). The Road less traveled: Charting a Clear Course for Autism Treatment. Autism Basic Information. COSAC, New Jersey.

Fry William, B. & Lee Williams, R. (2011). Effective Programs for Treating Autism Spectrum Disorder: Applied Behavior Analysis Models. Routledge, NY.

Maurice, C., Green, G., & Fox, R.M. (2001). Making a Difference. Behavioral Intervention for Autism. Pro-Ed, Austin, Texas.