What to do if you think your little one may be on the spectrum
6 | h ow Music affects k ids
The many benefits music has on your child
8 | u nderstanding limb d ifference
One aunt shares what she’s learned since her nephew was born with a common congenital anomaly
10 | s pecial child g lossary
Part of navigating a special needs or disability diagnosis is knowing the words used to describe it. Check out our helpful glossary
12 | s pecial n eeds listings
Helpful resources for the special need parent
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Is Your Child AutIstIc?
Steps to take if you think your child may be on the spectrum
By Dr. Emily lE vy
Many parents have that ‘a-ha’ moment when they realize their child may have a more profound challenge than they previously thought. Unlike your friend’s kid at the same age, your child has trouble maintaining friendships, struggles to communicate, or demonstrates repetitive body movements. Perhaps they have difficulty relating to the world around them and seems inflexible with their thoughts and behaviors. If you notice these characteristics, you shouldn’t ignore them. While your child could be delayed, it may be wise to seek a professional opinion and check if your child may be on the autism spectrum.
Learn the milestones
Many children with autism show developmental delays early on and don’t meet typical milestones. For instance, by 6-9 months, most babies can sit up without support, babble sounds, and respond to their name. By 9-12 months, babies typically grab objects and toys, crawl, and stand independently. Most children can walk independently between ages 1-3, climb stairs, jump, stack objects, speak in short sentences, and follow basic directions. Between ages 3-5, children can typically toss a ball overhand, get dressed independently, and draw a full person with all features. Children ages 6-12 generally have developed strong friendships with peers and are usually independent in completing their school work. If you notice delays or regression in any of these milestones and your instincts tell you something is off, your child may be at risk for autism.
Identifying autism
If you think your child nay have autism, take action. The sooner you identify and address autism, the better it will be for your family. Speak to your child’s doctor; they may inquire as to whether all developmental milestones have been met and may recommend an autism screening. A screening
typically consists of a series of yes or no questions regarding symptoms. If your doctor suspects that your child may have autism, your child may need to have a full diagnostic evaluation by an Autism Spectrum Disorder (ASD) specialist. Typically, the evaluator will observe your child, ask you as the parent a series of questions, fill out questionnaires, and administer a series of tests to your child. These factors will allow the evaluator to identify whether or not your child may have autism so you can take appropriate action for a concrete diagnosis.
What to do after diagnosis
If your child is diagnosed with austism, don’t panic. There are many resources and a great deal of support available for children with autism, and your child is certainly not alone! However, the earlier you intervene and seek services for your child, the more gains you will see. Once you receive the diagnosis, read the full report thoroughly and review the evaluator or doctor’s recommendations. Reach out to your child’s school to let them know about the diagnosis and inquire about creating an Individualized Education Program (IEP) to map out the services your child will receive based on his needs. These services may include special education classroom placement, speech therapy, occupational therapy, behavioral
therapy, physical therapy, or social skills groups. Creating a set structure and routine for your child and rewarding good behavior are just some of the actions you can take to support your child at home. The more you can work as a team with your child’s doctors, educators, and therapists will help provide consistent support to your child.
Many children with autism are kind, loving, high-achieving individuals who have countless gifts. With the right support, your child can succeed academically and thrive in life.
Dr. Emily Levy is the founder of EBL Coaching (eblcoaching.com), a tutoring program that specializes in one-on-one home and on-site instruction for students in grades preK-12 in NYC, NJ, and Westchester. She is also the author of Strategies for Study Success, a study skills workbooks series emphasizing test taking, note taking, reading comprehension, writing, and executive functioning strategies, and the Flags and Stars Orton Gillingham student workbook series. These books are currently used at schools nationwide. Dr. Levy studied at Brown University and later received her Masters Degree in Special Education and her Doctorate Degree in Education. She has spoken nationwide on research-based methods for teaching students with and without learning disabilities. Dr. Levy is currently the Director of EBL Coaching’s learning centers.
The Positive Effect of Music on Kids
by Danielle Ramos
Have you ever entered a doctor’s waiting room to hear cartoons blasting, loud chatter, phones beeping, and handheld games playing? Ever feel overwhelmed in those moments? Even the most sophisticated adults can feel overstimulated in noisy and chaotic environments, so consider how young children feel.
More importantly, the sound and noise level in your own home helps determine the stress factor. Creating a soothing and calm environment depends a lot on the sound influence. By intentionally using music as a tool, you can set or reset the tone of your home. Here are 5 ways how:
Homework Time
Playing some soothing tunes in the background while deciphering math problems is not only soothing but aids in brain stimulation. Known as the Mozart Effect, listening to music not only increases cognitive function in general but also specifically aids in performing mathematical computations, in particular, spatial-temporal reasoning.
Clean Up
Looking to find a fun way to clean up before or after dinner? Try a musical cue. By putting on a song that the kids enjoy, you will help get little hands in the mood to pitch in. If you play the same song each day but specifically for clean-up time only, you soon won’t even need to tell the kids that it’s time to tidy up. Once they hear the first few notes of the song, they will spring into action.
Explore Topics
What older kids listen to might reflect what they are thinking, but it also might just be a song that they really enjoy because it’s popular or has a good beat. You don’t know until you ask. Talking about lyrics is an awesome way to broach subjects and even art and writing and life in general. Get to know what your kids listen to without feeling the need to censor them all the time. And don’t be afraid to introduce them to the songs you like and explain why. Some of the best times with my kids have been deciphering the lyrics of a song.
Get Moving
Who says you need to do a formal and boring exercise routine every day? Turn up the tunes
and dance. Show the kids your fun side and get them moving at the same time. It’s not only incredibly fun, it’s an activity that helps release the day’s stress and reinvigorates you and your kids for the rest of the day.
No More Television
You don’t need to come home and mindlessly turn on the television. The noise from a blaring television can quickly become grating and does not usher in tranquility. On the contrary, when you walk in the door and turn on some music, you instantly set a soothing mood.
Using Music to Build Routines
Music is a great way to help kids get into a routine without it feeling like a chore. You can use a favorite song to mark specific times of the day, like starting the morning with something upbeat to get everyone moving or playing a calming tune before bed to signal it’s time to wind down. When kids hear the same songs at the same time every day, they start to connect the music with the activity, which makes transitions a lot easier. Plus, it brings a bit of fun to daily routines and helps kids feel more comfortable and less stressed when things change.
Dr. Vincenza Mineo FOR YOUR SPECIAL CHILD Caring
As a mother of a special needs child, I understand the challenges as both a mother and a provider. Foot and ankle issues are common among the special needs community. If left untreated, foot issues can significantly impact their overall health and quality of life.
I create treatment plans that accommodate the unique physical and sensory needs of each patient, ensuring effective and compassionate care.
Dr. Mineo is Board Certified by the American Board of Podiatric Medicine. She is a member of the New York Medical Society, APMA, and Associate Member of the American College of Foot and Ankle Surgeons.
Understanding Limb Difference
Exploring ways to support kids with this common disability
By Jeannine Cintron
When my brother’s wife was around twelve weeks pregnant with their second child, they received the devastating news that their unborn child was missing half of his right arm. Their physician had not yet been able to determine the cause of the abnormality. Although the baby seemed otherwise healthy, my brother and his wife were informed of the potential for a more severe issue. They were then advised to make the painstaking choice between terminating the pregnancy or running more tests – the results of which would not be revealed for some time.
In the end, they chose to face whatever health obstacles came their way, and a few months later, my sister-in-law gave birth to a perfectly healthy and beautiful baby boy named Hudson. Although he is likely to face many challenges throughout his life, he has the support of a wonderful family and is growing up in an ever-evolving society where those who are different are not to be defined by a disability but celebrated for their ability to thrive despite it.
My nephew, now a healthy and happy toddler, was born with limb difference. Limb difference is a broad term to describe congenital or acquired conditions resulting in the absence of any part of the arms, hands, legs, or feet. It is a physical condition and does not affect a person’s cognitive abilities. My nephew’s case is congenital, which is when a baby is born with a missing or underdeveloped limb due to genetic conditions, amniotic band syndrome, or an unknown cause. Acquired limb difference is caused by accidents or medical conditions that require amputation.
Raising a child with a limb difference certainly comes with challenges, but it also offers extraordinary opportunities for growth, resilience, and love. By fostering a positive outlook, connecting with supportive communities, and encouraging your child to embrace their individuality, you equip them with the tools they need to live a wonderful life.
Treatment
With the right combination of medical care, therapy, and adaptive devices, children
with limb difference can live very active and fulfilling lives. Many benefit from prosthetic limbs, which can be simple models for balance or high-tech ones controlled by muscle signals. Orthotic devices like braces and adaptive tools also help improve function. As children grow, prosthetics may need regular adjustments or replacements. In some cases, surgery can improve mobility or comfort.
Physical and occupational therapy play
key roles in helping children with limb difference adapt, teaching them to use prosthetics, build strength, and develop fine motor skills. Assistive technology, like modified sports equipment and voiceactivated tools, can also be very helpful.
Advocacy and Support
Beyond physical treatment, emotional and social support are crucial for children with a limb difference. Encouraging children to
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engage in hobbies, sports, and social activities helps build confidence while educating teachers and peers fosters a more inclusive environment.
Some organizations that support individuals with limb differences
The Lucky Fin Project – A nonprofit dedicated to raising awareness and providing resources for children with limb differences. luckyfinproject.org
The Amputee Coalition – Offers peer support, education, and advocacy for those living with limb loss. amputee-coalition.org
Families in New York City and surrounding areas might consider connecting with:
NYU Langone’s Hassenfeld Children’s Hospital for specialized care and support services. nyulangone.org/locations/ hassenfeld-childrens-hospital
Adaptive Climbing Group in Brooklyn for inclusive sports opportunities. adaptiveclimbinggroup.org/new-york-city
The Challenged Athletes Foundation for grants supporting sports participation and adaptive equipment. challengedathletes.org
Representation
For a long time, people with limb differences were underrepresented in media, toys, and pop culture as a whole. However, as we move toward a more inclusive society, we are starting to see more actors, athletes, and influencers with limb differences in the spotlight, proudly debunking outdated stereotypes about disability while normalizing diverse body types of all kinds. Social media has also provided a platform for advocacy, with creators sharing their personal stories and inspiring others.
Toy Companies
Toy companies now represent limb difference in their product lines, featuring dolls with and without prosthetics. Some examples are Mattel (Barbie), LEGO, American Girl and Vermont Teddy Bear.
TV and Movies
For a child with a disability, representation in the movies and on TV is highly encouraging. Families of a child with a limb difference should add these to their watchlist:
How to Train Your Dragon – Hiccup loses a leg and uses a prosthetic, mirroring his dragon, Toothless, who also has a prosthetic tail.
Soul Surfer – Based on the true story of Bethany Hamilton, a surfer who lost her arm
We are starting to see more actors, athletes, and influencers with limb differences in the spotlight, proudly debunking outdated stereotypes about disability while normalizing diverse body types of all kinds.
in a shark attack and returned to professional surfing.
The Mandalorian – Migs Mayfeld (played by Bill Burr) has a mechanical arm in later appearances.
Finding Nemo – Nemo has a “lucky fin,” a smaller, underdeveloped fin that makes swimming harder but doesn’t hold him back.
Doc McStuffins (episode: “Emma’s Amazing Wheelchair”) – Features a doll with a prosthetic leg to teach kids about limb difference.
Public Figures
There are many highly accomplished and inspiring people with limb differences to celebrate. Some of the most noteworthy individuals include:
Jessica Long – A Paralympic swimmer born with fibular hemimelia, resulting in the amputation of both legs below the knee. She has won multiple gold medals and is one of the most decorated Paralympians in history.
Nick Newell – A mixed martial artist with a congenital limb difference in his left arm. Despite this, he has built a successful career in professional MMA.
Amy Purdy – A Paralympic snowboarder who lost both legs below the knee due to bacterial meningitis. She later competed on Dancing with the Stars and is a motivational speaker.
Jim Abbot t – A former MLB pitcher born without a right hand. He played in the major leagues for 10 seasons and even threw a nohitter in 1993.
Zion Clark – A wrestler and motivational speaker born without legs due to caudal regression syndrome. He’s also known for his documentary Zion on Netflix.
Hugh Herr – A double amputee and renowned scientist specializing in bionic prosthetics at MIT. His work in biomechanics has revolutionized prosthetic limb technology.
Viktoria Modesta – A singer, model, and performer with a below-the-knee amputation who embraces her prosthetic as part of her artistic identity.
Josh Sundquist – A Paralympic skier, motivational speaker, and comedian who lost his leg to cancer at age nine. He’s also
known for his creative Halloween costumes incorporating his prosthetic leg.
Books
Reading is essential for all children, regardless of their abilities. Below are some must-reads for kids with limb difference.
Picture Books (Ages 3-7)
Different is Awesome by Ryan Haack – A boy with one hand teaches his classmates that being different is something to celebrate.
Luka’s Prosthetic Leg by Jessica Smith – Follows Luka, a young boy who gets a prosthetic leg and learns to navigate the world with it.
What Happened to You? by James Catchpole – Written by an author with a limb difference, this story follows Joe, a boy with one leg, as he navigates curious (and sometimes exhausting) questions from other kids.
Hugo and the Impossible Thing by Renée Felice Smith & Chris Gabriel – Inspired by a real dog with a limb difference, this story teaches perseverance and determination.
Early Readers & Chapter Books (Ages 7-12)
Insignificant Events in the Life of a Cactus by Dusti Bowling – Follows Aven Green, a girl born without arms, as she moves to a new town and solves a mystery.
Aven Green, Sleuthing Machine by Dusti Bowling – A younger chapter book series featuring Aven as a spunky young detective.
Emmanuel’s Dream: The True Story of Emmanuel Ofosu Yeboah by Laurie Ann Thompson – A beautifully illustrated nonfiction book about a Ghanaian athlete and activist with one leg.
Teen & YA Books (Ages 12+)
A Time to Dance by Padma Venkatraman – A novel-in-verse about an Indian dancer who loses a leg and rediscovers her passion for dance.
One-Handed Catch by MJ Auch – Based on a true story, this novel follows an aspiring baseball player who loses his hand in an accident and learns to adapt.
The Running Dream by Wendelin Van Draanen – A powerful novel about a teenage runner who loses her leg in an accident and learns to run again with a prosthetic.
Sp E cial
N EEDS Glossary
Keywords that every special needs family should know
By Mia Sala S
Part of navigating a special needs diagnosis is knowing the words used to describe it. But it can be intimidating to ask what everything means, especially when doctors or websites seem to be speaking another language with acronyms like “ERSS” and “OT”. We’ve all been in that confusing place before and, as parents, it’s not a fun feeling. That’s why, we’ve created a glossary for keywords that you may want to know as a parent of kids with special needs. This guide includes common special needs words, phrases, and acronyms so that you can feel more confident in your parenting journey!
Special Needs Diagnosis
Developmental disability: Physical, learning, language, or behavioral impairments that will delay your child’s development. ADHD, Autism, learning disabilities, etc. are all examples of developmental disabilities.
ADHD– Attention Deficit/Hyperactivity Disorder: A developmental disability that makes it difficult for your child to pay attention or stay focused. Look out for squirming and fidgeting, talking a lot, not being able to wait for their turn, or trouble concentrating.
ASD– Autism Spectrum Disorder: A developmental disability that may delay your child’s speech, motor, learning, and social skills. Early intervention (see below) can help improve skills.
Down Syndrome: A condition caused by an extra chromosome that affects how your child’s brain and body develop. Diagnosis typically happens before or during birth. Emotional Disturbance: Mental health disorders such as anxiety, bipolar, OCD, etc. that have no direct, identifiable cause. Be on the lookout for aggressive behavior,
withdrawal or nerves related to social environments, and vocal outbursts in public places.
Learning Disability: Difficulty learning and grasping new concepts. Learning disabilities include dyslexia (reading), dysgraphia (writing), and dyscalculia (math). See Special Education for more. Stutter: A speech disorder that makes it challenging for your child to say what they want to say. You may hear them repeat a sound a lot, hold one sound for a long time, or stop speaking mid-sentence.
Special Needs Resources
OPWDD– Office of People with Developmental Disabilities: A New York organization that can help connect your family to nonprofit services, based on what kind of treatment/therapy they need, and provide funding.
Transition planning: Creating an action plan for what your child with special needs will do after high school. This is often a part of your IEP (see below).
Service provider: An agency or organization that will help your special needs family navigate some aspect of your journey. This could be everything from speech therapy to after school programs with a focus on special needs to horseback riding as a form of physical therapy.
INCLUDEnyc: A non-profit organization that
advocates for young people in NYC to be included in their communities: classrooms, workplaces, etc. They have super informative resources for parents of kids with special needs, and they can connect you with professionals who can help you navigate your options even further.
Special Education
Inclusion: Everyone in the classroom feels welcomed by the school, teacher, and classmates. For special needs kids, inclusion is definitely a keyword to look for when choosing a school!
IEP– Individualized Education Program: A written plan for your child’s education as a special needs student. According to the NYC Department of Education (DOE), this means your child is guaranteed a free and appropriate public education in a Least Restrictive Environment (see below). Your child’s IEP will also include development and progress reports, evaluation results, specific needs, and anything else that is relevant to your child’s success.
IEP Teams: Your IEP team will be made up of you (as a parent/guardian), a school psychologist, a special education teacher (and sometimes a general education teacher), and the district representative. It may also include a school physician or other service providers who have worked with your child.
LRE– Least Restrictive Environment: Your child will be in a classroom with kids who do not have special needs.
SETSS– Special Education Teacher Support Services: Either a special education teacher will design specific activities for children with special needs or the special education teacher will collaborate with the general education teacher to modify the entire classroom to accommodate.
SEDL– Special Education Distance Learning: Modifying special needs education for virtual/online students. This became especially important during the pandemic.
SWD– Students With Disabilities: Used to refer to special needs children in the classroom.
SC– Special Class: If your child’s needs cannot be met in a general education classroom, they will have all classes taught specifically by a special education teacher. These classes are typically very small in NYC schools, with up to 12 students for elementary/middle school and up to 15 for high school.
PBIS– Positive Behavioral Interventions & Support: NYC school-wide approach that encourages positive behavior instead of punishing or pointing out the negative. One example of this is changing a poster from “No Food. No Weapons. No Drugs.” to “School Rules: Be Safe, Responsible, Respectful”. This positive environment is especially important for special needs education.
Special Needs Treatment & Evaluation
ADL– Activities of daily living: Day-to-day actions like brushing your teeth, going to the bathroom, walking up and down stairs, etc. that are used to determine your child’s diagnosis and progress.
Early intervention: Services and support for infants and young children with developmental disabilities. Early intervention can often help improve your child’s skills and progress.
OT– Occupational Therapy: Focuses on ADL’s (see above) and other everyday skills that your child will work on.
PT- Physical Therapy: Focuses on physical
developmental disabilities and helps your child with mobility and movement.
Speech pathology: Focuses on language and speech disabilities to help your child communicate their thoughts.
Regression: Your child loses skills that they previously had. If regression happens, you may want to revisit and revise your child’s IEP (see above).
AT– Assistive technology: Any device that helps your child’s special needs by improving their capabilities. AT’s include wheelchairs, text to speech, voice recognition, and more.
ABA– Applied Behavior Analysis: A positive-reinforcement program designed to understand your child’s behavior in real life situations. It is most commonly used for children with Autism, but it can also be effective for other developmental disabilities.
Developmental milestones: Key movements, expressions, speech etc. that show your child’s progress. For little ones, this may include smiling at people, crawling, copying sounds, and reaching for toys. suPPort
Our responsibility as human beings is to support ourselves and one another. eQuity
To participate in community is to have active citizenship. To be a participating citizen, one must have opportunities which are equitable; which accommodate the differences all human beings have. aCCeptance
One of the most vital components of having a quality of life is love. It's okay to tell someone you love them; more importantly, it's okay to show them. To accept another for who they are and what makes them human can be a most validating experience; it is selfempowering.
The Community School provides a personalized education for students with learning differences within a traditional academic framework. Through small group instruction, innovative teaching, and a multi-sensory approach, they support diverse abilities and interests. With related services, extracurriculars, and sports, The Community School help students build confidence and develop the skills needed for academic and lifelong success with a commitment to empower every student to reach their full potential in a supportive and enriching environment.
lifetime changes b ehavior services
683 Henderson Ave. 929-256-0231
lifetimechangesbehavior@ gmail.com lcbehavior.com
Lifetime Changes Behavior Services is a New York Citybased early intervention agency that helps children with disabilities. All services and transportation are free for residents. The agency also offers a private-pay sleepaway summer camp that focuses on social skills development, emotional regulation activities, team building, crafts, hiking, swimming, and more.
d r. Mineo
Board Certified by the American Board of Podiatric Medicine
1887 Richmond Avenue: 718-880-7000
1478 Victory Blvd:
718-273-0123
As a mother of a special needs child, Dr. Mineo understands the challenges as both a mother and a provider. Foot and ankle issues are common among the special needs community. If left untreated, foot issues can significantly impact their overall health and quality of life. Treatment plans are created that accommodate the unique physical and sensory needs of each patient, ensuring effective and compassionate care.
Marvin’s c amp for children with s pecial n eeds
HKC Campgrounds 1131 Manor Rd. 718-475-5231. camp.sijcc.org/marvins-camp. html
GWechsler@SIJCC.com
Marvin’s Camp provides
an inclusive, supportive, and enriching summer experience for campers with special needs, ages 6 to 21. Marvin’s Camp programs are designed to meet the unique needs of kids with special needs in a safe, social, and creative environment. With low camper-to-staff ratios and highly experienced staff in special education, social work, and school psychology, campers receive individualized attention. Interviews are required for all new Marvin’s campers.
Metro community h ealth center
Staten Island
2324 Forest Avenue, Staten Island, NY 10303 718-447-0200
mchcny.org
Metro Community Health Center (MCHC) provides high-quality, wellcoordinated primary and
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specialty care, with a strong commitment to individuals with intellectual and developmental disabilities. Their skilled physicians, therapists, nurses, and staff deliver compassionate, evidence-based, and culturally competent care, regardless of a patient’s ability to pay. Services include primary care, dental, neurology, GYN, podiatry, behavioral health and psychiatry, all in a comfortable and supportive environment. MCHC ensures accessible healthcare for all, prioritizing dignity and comprehensive wellness.
Monster Mini g olf
775 US 1, Edison, NJ 732-248-4400
edison@monsterminigolf.com monsterminigolf.com/edison Monster Mini Golf is an indoor, fun, affordable, upbeat experience for
special needs humans of all ages. Their 18 holes of monster-themed mini golf, glow-in-the-dark experience is wheelchair accessible, climate controlled, with interactive team members. Music volume levels are adjustable upon request. Monster Mini Golf has monstrous-themed activities for special needs monsters of all ages. For more excitement, they have an on-course DJ, arcade games, bowling, sensory-friendly prizes, and private party rooms!
o n your Mark 645 Forest Ave. #2A, 718-720-9233
info@onyourmark.org onyourmark.org
On Your Mark operates businesses that employ individuals with intellectual and/or developmental disabilities, providing
them with meaningful job opportunities and handson training. Every purchase directly supports the maintenance and expansion of these vital programs. Their businesses include the On Your Mark Café and On Your Mark Chocolatiers at 639 Forest Avenue, as well as The Café at Carmel Richmond Nursing Home at 88 Old Town Road. Additionally, they offer catering services, further promoting inclusivity and independence.
o ur Journey n P Psychiatric services
1036 Victory Blvd. 845-669-7060
info@ourjourneysi.com ourjourneysi.com
Our Journey NP Psychiatric Services is a private practice providing comprehensive psychiatric care for individuals ages 4 through adulthood. They offer
psychiatric evaluations, medication management, ADHD testing and treatment, addiction management, psychotherapy, and psychosocial evaluations. Additionally, they conduct evaluations for housing and other support services.
Person centered c are services 150 Granite Avenue info@pccsny.org pccsny.org
Person Centered Care Services is a not-for-profit organization dedicated to creating social change by supporting people with disabilities in their pursuit of identity and acceptance. Our services include Community Support, Residential Supports, Employment Supports, Day Supports, Family Education & Training, and Self-Directed Supports.
