March was National Developmental Disabilities Awareness Month. It got me wondering about families navigating the twists and turns of raising children with disabilities. I wanted to get a parent’s point of view. Typical kids have so much to navigate with learning, angst, confusion, questions, etc. as it is. How do they handle a physical, learning, or developmental disability? Are the schools able to help? Do their programs work? What help can they get around our communities? In a major city? Or when they travel on public transportation?
While living in NYC a decade ago, I was healthy enough to navigate mass transit while pregnant and then with my baby in a carrier. However, that all changed once I needed to push a stroller. Trying to find an elevator was often difficult if there even was one. Trying to find a clean one? Well, that was another challenge altogether. Where do families get support and resources?
Then, I started thinking about neurodiversity and what this term means. Where would I even begin? After speaking with a friend involved in many local non-profits, I learned that I didn’t even know how to phrase a question on this topic without possibly being insensitive. Terminology in this field is extremely important. Additionally, it’s sometimes out of date and not fully agreed upon, even among experts in the field.
This then led me to speak with a fellow book club member, Danielle Ward, who is a non-legal parent advocate. She helps families advocate for their parental rights in education and find resources for their neurodivergent children through her business, Encompass Parent Solutions. I realized that it’s a world of new acronyms in a field that is completely out of my expertise. I put off my research and possible article on this topic for fear of doing it wrong.
Fast forward to a summer social event for moms. By chance, I got seated with three parents of neurodivergent kids. Grateful for my earlier research, I could understand most of what they discussed. But, I was surprised to hear that they felt that they were tackling this topic all alone. Two of them had felt this way for a decade! And although they live in towns with well-funded school systems, they continue to have challenges getting help and resources. I asked if there were any local support groups and was shocked that these parents said there were none to their knowledge.
This is surprising, since according to the CDC’s "Children’s Mental Health: Data & Statistics” article, “1 in 6 U.S. children aged 2–8 years (17.4%) had a diagnosed mental, behavioral, or developmental disorder” as of 2016. Pew Research Center found that “7.3 million disabled students in the U.S. made up 15% of national public school enrollment during the 2021-22 school year.”
I suggested they connect with an informed parent advocate, like Danielle. This made me realize, I could at least share some basics that might help parents just getting started on this journey, parents seeking a new IEP or 504 Plan, or new families in the area seeking helpful resources. This is perfect timing, since October is Learning Disabilities, ADHD, and Dyslexia Awareness Month. What follows is information that Danielle shared with me, as well as a Q&A with her, the organizations she recommends, resources, and local businesses/organizations that support the cause. Hopefully, this information is helpful to some of you. We will add more resources, as we find them.
Also, while I may be using the term neurodiversity, the term disability is often used interchangeably and may be a provocative term for some individuals. According to the Child Mind Institute on “What is Neurodiversity”: “‘Neurodiversity’ is a popular term that’s used to describe differences in the way people’s brains work. The idea is that there’s no ‘correct’ way for the brain to work. Instead, there is a wide range of ways that people perceive and respond to the world, and these differences are to be embraced and encouraged. Neurodiversity was coined in the 1990s to fight stigma against people with autism, as well as ADHD and learning disorders like dyslexia.”
To not get stuck on this debate, please feel free to contact or connect with the resources that help you feel comfortable with your preferred terminology and identity-first language. While I might not know the best term to use at any given time, this shouldn’t stop us from sharing and seeking help.
Encompass Parent Solutions
Danielle’s mission, Encompass Parent Solutions, is to help families with neurodivergent children, such as autism, mental health conditions like ADHD and anxiety, learning disabilities like dyslexia, developmental delays, speech/language impairments, and more. She helps parents learn to advocate for themselves and their students, so that they may feel confident speaking with the necessary school groups, expert resources, and agencies that may provide them with help for their children. She helps parents communicate with confidence to allow their children to thrive both at home and at school.
If your child is struggling in school or with developmental delays, it can be a drawn-out process to obtain an IEP or 504 Plan with the schools and get the necessary help. There is the formal request process, including the need to handwrite letters, obtain doctor evaluations, and attend meetings. Too often, parents are overwhelmed with these steps and may be denied access to services made possible by our federal education laws, Individuals with Disabilities Education Act (IDEA), and Section 504 of The Rehabilitation Act of 1973 (504 Plans). She helps in this process and considers herself a stepping stone to connect families to other resources, such as lawyers, therapists, speech therapists, psychologists, occupational therapists, and doctors. For example, with doctors, she advises parents to speak with their pediatricians more often about their children’s learning issues or developmental delays.
To start, she recommends several NJ and nonprofit parent resources and community groups to kick-start your research, including reaching out to your local support groups or Special Education Parent Advisory Group (SEPAG) in your school district. SPAN Parent Advocacy Network has a great overview on how to connect with local parent groups in New Jersey as well. Below are resources that help parents find the help they need for their kids with neurodivergent concerns or disabilities. No matter the terminology, know that there are many parents out there with similar concerns. It’s better to reach out and learn about this topic sooner than later in a child’s educational path.
Child Mind
Child Mind is an independent non-profit in the mental health field providing care, educational resources, and education in underserved communities. According to Child Mind’s article on "Understanding Special Education Laws", “Schools are required by law to provide appropriate accommodations and education plans to children who qualify, but understanding just what kind of help is included—and who qualifies—can be difficult. Making sense of the two laws that guarantee these supports is a good place to start.”
The first federal law is a civil rights law called Section 504 of The Rehabilitation Act of 1973. From the U.S. Department of Education’s article on “Protecting Students With Disabilities”: “The Section 504 regulations require a school district to provide a ‘free appropriate public education’ (FAPE) to each qualified student with a disability who is in the school district's jurisdiction, regardless of the nature or severity of the disability. Under Section 504, FAPE consists of the provision of regular or special education and related aids and services designed to meet the student's individual educational needs as adequately as the needs of non-disabled students are met.”
The second federal law is the Individuals with Disabilities Education Act (IDEA). According to the U.S. Department of Education, “The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 8 million (as of school year 2022-23) eligible infants, toddlers, children, and youth with disabilities.” This law ensures that the rights of children with disabilities and their parents are protected and that they can access and ensure they receive a free and appropriate public education. To be eligible, students have to be identified under one of 13 categories, such as autism, hearing / visual impairment, development delay, emotional regulation impairment, intellectual disability, orthopedic impairment, or other impairing health conditions (such as ADHD, communication disorder, traumatic brain injury.) Under this law, all eligible kids, whether enrolled in public or private school, have rights to special education and accommodations.
Once a child is found eligible under IDEA, the school and teachers produce an IEP (Individual Education Program). This plan gets reviewed yearly, details and delivers the education approach, specific learning instruction, accommodations, modifications and any related services best suited for a child.
SPAN Parent Advisory Network
SPAN Parent Advisory Network is New Jersey’s parent advocacy, training and information center and its mission is to empower and support families and inform and involve professionals interested in the healthy development and education of children and youth from ages 2-21. The nonprofit organization advocates for parents under federal and state mandates. They provide parent training, resources, advocacy services for families and can even provide translated documents in 20 languages and also include a sub-group called SEVA (Special Education Volunteer Advocates), which is bilingual. According to Danielle, “it’s often difficult to provide information and advocate for families not only because of the language barrier, but sometimes families may not even understand how to search for support or may not have access to online resources or consistent wifi at home.”
Understood
Danielle shared that Understood is “an amazing social impact organization raising awareness about the millions of individuals in the U.S. who learn and think differently.” She referenced Understood’s "Learning Disabilities by the Numbers" article: “1 in 5 children in the U.S. have learning and thinking differences like dyslexia and ADHD. These challenges are caused by variations in how the brain develops and processes information. But it's unrelated to intelligence. It just means kids need strategies and support to help them thrive.”
She calls it the Web MD of learning disabilities and mental health conditions like anxiety and ADHD. They help kids from early childhood to college, as well as help them with resources when they enter the workforce. They provide tools and resources for parents to learn about school communication, how to work with teachers, understand your child’s struggles with learning, and access online support groups and hundreds of experts. The site is written at the 8th-grade reading level, since many parents may also have undiagnosed learning disabilities, which are often genetic. For the kids, they have information on how to interact with peers, and homework help like how to take notes in school and organization tips. This resource is bilingual in Spanish.
Q&A with Danielle Ward
Q: Tell a little bit about how this mission came to be so important to you.
A: Working with parents one-on-one is a passion of mine and after 15+ years of working in public relations, I wanted to get back to my roots of parent advocacy for families of kids with learning disabilities. I have two kids with learning differences and have advocated for their needs in both public and private schools. Over the years, I’ve worked with countless experts, disability advocates, media, influencers, and non-profit and government leaders in special education. I became a parent advocate in 2022 and started my business, Encompass Parent Solutions, to pay it forward and put this expertise to work for other parents so their kids can thrive.
Q: What part do your children play in your mission?
A: My two kids were diagnosed with various learning disabilities, ADHD, speech-language and OT issues in early elementary school and I had to learn quickly how to get the support and resources they needed. It was lonely advocacy work in the beginning but then I started a local support group at my kids school and have been advocating with parents ever since. Both my kids are in college now, but advocacy doesn’t stop when they attend higher education or the workforce. By teaching our kids how to start to advocate for themselves at a young age, I promise it will pay dividends as they grow more independent. These conditions are life-long issues and once your kids build their coping skills and support network, they will take off and fly. My mission is to help parents get the knowledge and build their confidence to help their kids progress.
Q: What lessons/values are you learning through this mission?
A: I am a firm believer that every child deserves the chance to feel supported and confident in who they are both at school and at home and neurodiverse learners are no exception. Their unique gifts and learning styles shouldn’t have to bend to meet the criteria of our strict education models in the classroom that work for typical learners, but rather we should help schools and families meet them where they are and allow them the freedom to thrive. I value listening to my clients and don’t take for granted the stress and emotional strain they are under with their child’s struggles.
Q: Anything else you would like Macaroni Kid Summit Short Hills SOMA to know/share?
A: The first thing I tell parents is to trust their instincts. Parents are usually spot on, but they need reassurance. If they have a child that is struggling in school, and/or dealing with a mental health issue like anxiety, depression or ADHD, it’s time to get organized, build your knowledge and take action! Reach out to your teacher if you notice any signs at home or with homework, social-emotional issues with peers, etc., as they can help build some interventions and support options to help your student. Next, reach out to your pediatrician and share the concerns you’re seeing and ask for suggestions on how best to request school support. And finally, find your community including your local SEPAG, and build your advocacy tool kit. Most parent advocates provide a free initial consult, so search for a reputable non-legal parent advocate close to your community. I recommend visiting COPAA.org to search their database of parent advocates and attorneys in your area.
Resources
- Encompass Parent Solutions
- Child Mind
- SPAN Parent Advisory Network
- SEVA (Special Education Volunteer Advocates)
- Understood
- COPAA, Council of Parent Attorneys & Advocates
- NCLD, National Center for Learning Disabilities
- Disabilities Rights New Jersey
- U.S. Department of Education’s Office of Civil Rights (OCR)
- “Protecting Students With Disabilities” - FAQ on Section 504 and the Education of Children With Disabilities
- NJ Department of Education
- NJ PRISE, NJ Parental Rights in Special Education
- NJ Department of Children and Families
- American School Counselor Association's Awareness Calendar June 2024 – July 2025
Schools
- The Alliance of Special Education Schools in NJ - excellent resource to search for schools in NJ that support neurodiverse kids.
A sampling of regional private schools for neurodivergent students include:
- Barnstable Academy - Oakland
- Cambridge School - Pennington
- Cornerstone Day School - Cranford
- Fusion Academy - Montclair (also in Morristown, Princeton)
- Newmark School - Scotch Plains
- The Calais School - Whippany
- The Community School - Teaneck
- The Craig School - Mountain Lakes and Montville
- The Winston School of Short Hills
- Winston Prep - Whippany (also in NYC, CT)
Supportive Businesses
- Beloved Bath - Maplewood - Pamela Kattouf - Autism & Special Needs Coaching & Employment
- CNP Treasures - West Orange - As the retail division of CNP Community Services, their program provides retail training to young adults with Autism Spectrum Disorder
- Linda’s Creative Gifts - New Providence - Has specially curated baskets from artists and business owners with disabilities.
- Sorriso Kitchen - Chatham - On Mondays, the restaurant is closed. It becomes a “teaching classroom” that helps students with special needs become employed. They do this by offering real-life job training skills starting in 2019. They also started The Reasons to Smile Foundation
- Sweet Nothings - Summit - Supports local schools & organizations that support those affected by autism
- [Words] Bookstore - Maplewood - Hires young people with autism as part of their vocational training program
