Indispensable Information for Brothers and Sisters of Adults With Disabilities
…is a new book that is now available for purchase. As the title suggests, the book is geared toward siblings of people with intellectual and developmental disabilities and offers strategies, data, and anecdotes from experts in the field and first-hand accounts from many siblings themselves.
The book may also appeal to parents of people with disabilities as well as service providers. The foreword to The Sibling Survival Guide was written by Rachel Simon, author of the famous memoir Riding the Bus with My Sister. All royalities from the sale of the book will be donated to Sibling Leadership Network. For more information about The Sibling Survival Guide, CLICK HERE.
Twice a week, people supported through programs provided by AHRC NYC’s Cyril Weinberg Day Center in Queens travel across the street from their program to Materials for the Arts, (MFTA,) to give back to thier local schools, agencies, and nonprofit organizations.
On a cold, yet bright November day, St. Clair Comas, Sharon Jackson, Malcolm Gaffney, and Batise Washington were accompanied by Community Support Professional, Lidia Mahan on a short walk to MFTA’s warehouse in Long Island City. Once inside, the group rode the elevator to the third floor, where the warehouse is located, signed their names into the visitor’s log, and started their work.
MFTA is operated by the New York City Department of Cultural Affairs. “We are a reuse center,” said Nakeshia Betsill, MFTA’s Volunteer Coordinator. “We get donations of materials from companies across the country that don’t need them, and we redistribute them for free to organizations that could make use of the stuff.”
The amount of items stored in the warehouse is truly astounding, housing everything from books, decorations, school supplies, random knick-knacks, and an array of other art materials. These items are made available at no charge to nonprofits, schools, and government agencies that can make use of them. Lidia estimated that she has been accompanying the people she supports to the warehouse for over a decade, a time-frame during which Sharon, Malcolm, and St. Clair have been regular volunteers.
The foursome’s responsibility on this day was to organize recently received shipments of materials into yellow boxes so that they could be distributed to the warehouse’s visitors. In the lead-up to the holidays, the group unpacked Christmas ornaments and decorations originally intended for sale at Macy’s. To help spice up the workplace, an employee at MFTA put on some music while the group sorted materials. The result was a fun-filled work environment set to classic tunes by Stevie Wonder, The Temptations, The Foundations, and more. Sharon, in particular, loved the music, dancing and singing along while exclaiming “MFTA is fun and happy!” before letting out a hearty laugh.
SUMMERTIME AND THE LIVING IS EASY
Summer options for children and adults with developmental disabilities
DATE and TIME: Wednesday, January 14, 2015 from 6-8 pm
LOCATION: AHRC’s Main Office, Penthouse – 83 Maiden Lane NYC 10038
PRESENTER: Gary Shulman, MS, Ed., Special Needs Consultant and Trainer
DESCRIPTION: Summer will be here before you know it! Families caring for children and adults with disabilities need to know about their options when it comes to summer programs that will provide an appropriate experience for their children. This session will cover such issues as:
- What questions do I need to ask the summer program in order to determine if it meets the goals that I want for my child during the summer
- How do I prepare my child with special needs for a summer program
- Day programs vs. sleepaway programs
- Mainstream programs vs. special needs programs
- Financial Aid to pay for camp
- Summer remedial programs
- Specific quality summer programs serving NYC children with disabilities
- How do I find those camps
- Where do I find Summer Camp Fairs so I can meet the staff
REGISTRATION: To register, CLICK HERE.
You can also register by contacting:
The following is an article written by Melanie Brazil, mother of Elijah, who for the last three years has spent a couple of weeks each summer up at Camp Anne. It was published in FACES, a newsletter focusing on stories pertaining to epilepsy and seizures sent out by the NYU Langone Medical Center.
“Macadamias, pecans, walnuts“; unlike his twin brother Gabriel who asks for cookies, chips and candy, Elijah asks for nuts when he wants a snack. Elijah cannot have sugary snacks as he is on the high fat, low-carb ketogenic diet to help control his seizures. His special diet does not prevent him from participating in varied activities, and this summer, Elijah went to camp, along with a cold box full of his keto food. A recipient of the Dr. Blanca Vazquez Summer Camp Scholarship Program, Elijah attended AHRC’s Camp Anne for 10 days. This has been his third summer at the Upstate New York camp and he had some amazing experiences. His favorite activities were splashing in the zero-entry pool and visiting the lake. He also loved the horses and chickens. Elijah has been lucky to have the same counselor for the last three summers, and as a young camper gets lots of attention from everyone.
Elijah was diagnosed with Lennox-Gastaut Syndrome before his second birthday. He was experiencing multiple generalized seizures and went through many different medications. Without lasting seizure control the dosage levels of his drugs escalated and so did the side effects. For about a year, Elijah was bloated, drowsy and unable to focus for much of the time. Then Elijah’s neurologist suggested trying the ketogenic diet – a prescribed medical diet that is very high in fat and low in carbohydrates. It is known that starvation can control seizures, and this diet mimics starvation by putting the body into a state of ketosis which forces the body to burn fat for energy instead of carbohydrates. The neurologist decides the ketogenic ratio, which defines how much fat compared to the sum of protein and carbohydrates is in every meal. Each meal is also calorie controlled, so the different parts of Elijah’s meals must be carefully weighed out to the prescribed calories.
After initial skepticism was put to rest by the weight of the scientific evidence, and perhaps harder, after coming to terms with the commitment needed to manage the diet, we decided to give it a go. Initially, nothing changed, but after a few weeks of tweaking, Elijah’s seizures just melted away. We enjoyed a few blissful months seizure free and Elijah’s teachers and therapists were amazed at his improved development. Eventually, some seizure activity returned, but nothing like before the diet.
Even with some seizure control, Elijah still has global developmental delays and at 7 years old, his speech is just emerging. He needs constant attention as he has no concept of danger. It was hard to imagine that he would ever be able to go to a sleep-away summer camp. But three years ago at the RCSN Summer Camp Special Needs Fair, I stopped at the AHRC desk to inquire about day respite care for then 4-year old Elijah and they asked if I had thought about sleep-away camp. In fact the day respite they offered was for older children with a student to counselor ratio of about 3:1 but AHRC’s residential Camp Anne takes kids as young as 5 and can provide a 1:1 student to counselor ratio.
Sleep-away was not something that I had really considered for my special needs son and my initial reaction was that it was crazy! At that same fair I spoke to another parent who’s special needs son had been going to camp for many years now. She said that her son spends half the year looking forward to camp and the other half reminiscing about all things-camp. Her only regret was that she did not know about Camp Anne sooner and that her son only started attending as a teenager. So the seed was planted.
After some reflection, I talked to staff at Camp Anne about Elijah’s suitability and after the discussion and interview, they said they thought he was! The next hurdle was trusting the staff at Camp Anne to prepare Elijah’s keto meals. Every component of a keto meal must be weighed so that each meal has the prescribed amount of fat, protein and carbohydrate, and every meal must be eaten in full. The easy answer was at first I didn’t really trust them! For Elijah’s first camp experience I sent down all his food with everything pre-weighed and assembled. But I soon relaxed as Michael Rose and his staff at Camp Anne are experts at looking after special needs children. They even have a chef who focuses on special diets. Since then, I have become more laid back and given instructions for the chef to provide and weigh some parts of the meals. Elijah was even allowed extra calories for special occasions at Camp, such as celebrating his birthday with a special keto-cake, and the last-night banquet. While Elijah was at camp, the rest of the family took the opportunity to take a regular beach vacation, and importantly Elijah’s brother Gabriel, got a chance to get all the attention for a change and do fun activities too.
Living life day to day with a precious special kid has its joyful moments, but it is also all-encompassing, so respite is hugely important. The wonderful thing about sleep-away camp is that it allows for family respite while giving a great experience to your kid. Even if your child is young, think about giving them this fantastic experience and give yourself a break at the same time. For now I can say that the last three years at AHRC’s Camp Anne have been an amazing experience and I would recommend it to any family in this situation.
On Wednesday December 3, 2014, AHRC New York City’s Staten Island Employment and Business Services, (EBS,) received a grant in the amount of $35,000 from the Richmond County Savings Foundation (RCSF). In a ceremony attended by AHRC New York City leadership, staff, people supported by programs at AHRC New York City, members of the community, and representatives from RCSF, Laura J. Kennedy, President of AHRC New York City and President of NYSARC, and Steve Towler, Assistant Executive Director, graciously accepted the grant from Cesar J. Claro, Executive Director of RCSF. The funds will be used to purchase a new Smart Board, 15 new computers, and iPads for the Staten Island EBS office, to assist the people we support in learning the skills and strategies necessary to gain and maintain employment in today’s job market.
Mr. Towler noted that since AHRC New York City’s EBS programs began over 25 years ago the agency has helped thousands of people with intellectual and developmental disabilities and at-risk youth get jobs in a wide variety of fields. “But over the years things have changed and the tools that you need to be a part of the workforce have evolved,” he said.
“Today’s world requires that in order for you to be prepared for today’s workforce demands it’s necessary to understand & utilize technology.” Steve stated that EBS has become an integral part of the Staten Island community, highlighted by the fact that people who help clean both sides of the Staten Island Ferry stations were trained by programs operated by AHRC New York City. Naira Aslanyan, Regional Director, led Staten Island EBS’ efforts to receive the funding.
“We love to fund programs like AHRC due to parental involvement, service to the community, particularly for young people, and most importantly finding work for young people in our community,” Mr. Claro said. He stated that the Foundation has provided over $50 million to nonprofits across New York City, Long Island and New Jersey since it was founded in 1998.
He also stressed that RCSF’s relationship with AHRC New York City is just beginning and encouraged future connections and relationships.
AHRC New York City’s Employment and Business Services constitute the largest employment constitute the largest employment program for people with intellectual and developmental disabilities an at-risk youth in New York State. Staten Island EBS has a number of ways to connect young people with and without disabilities to jobs of their choice, including the Young Adult Internship Program and Staten Island HIRE.
Using the funding from RCSF, Staten Island EBS will strive to continue to positively impact the lives of young Staten Island residents and the community at large by providing secure employment and much needed services.