Parenting Special Needs
Every school year brings new meetings, new decisions, and new opportunities to speak up for your child. Whether you’re navigating an IEP, coordinating medical care, or planning for the future, advocacy is a skill that grows with experience.
In this article, Erin Croyle shares practical lessons and real-life perspectives to help you build confidence, strengthen relationships, and advocate with purpose—one step at a time.
Advocacy began early for Erin Croyle, who attended conferences while caring for her infant son.
Anyone with a disability or neurodiversity knows how hard it is to live in a world not designed for them. Incidental and intentional roadblocks are everywhere.
Now more than ever, people with disabilities, their families, caregivers, friends, and allies need to understand how to advocate effectively for their needs throughout every stage of life.
What better time than our Back-to-School issue to enlist in an ADVOCACY BOOT CAMP?
THERE ARE NO SIMPLE SOLUTIONS
It is absolutely imperative to know that there is no one answer to everything. If someone claims to hold some special key to whatever you need—and particularly if they’re charging for it—it’s likely snake oil.
While there are systemic issues at play, the specifics vary with each individual and are further complicated by the unique dynamics within every community.
At the same time…
Families and self-advocates work together to create meaningful change—one relationship at a time.
So much of the disability community exists in silos: physical, intellectual, developmental, neurodiversity, autism, Down syndrome, cerebral palsy, medical complexities, deaf and hard of hearing, blind and visually impaired, traumatic brain injury, rare conditions—the list goes on and on.
While targeted support, services, and therapies can be incredibly helpful, failing to come together across these communities prevents us from creating meaningful, lasting change.
Ultimately, our struggles—and their solutions—are shared.
By working only within our own disability communities, we’re doing ourselves a disservice. The only way to create meaningful, long-term change is through a unified voice and vision.
Connecting with other families, disability organizations, and professionals to identify common goals is how we open the floodgates of accessibility across the lifespan.
Those connections are also critical because…
IT TAKES A VILLAGE
“I feel like people believe that just because you’re a special needs parent, you’re inherently a good advocate and that’s just not true for me,” Meghan Kennedy said. “I’m terrible at challenging people and raising conflict.”
Yet in the same conversation, Kennedy—an artist and mother of two teenage children with very different but equally demanding support needs in upstate New York—shared how valuable strong relationships with her son Oliver’s therapists have been in advocating for him.
Oliver has cerebral palsy, complex medical needs, and requires total care, including nursing support at school and home.
Kennedy has worked closely with an occupational therapist who understood how the school system worked. She’s also talked with other parents to learn what accommodations and services they use and whether those supports might benefit Oliver.
Kennedy is proof that being a strong advocate isn’t about having all the answers. It’s about recognizing when you need help—and knowing where to find it.
Which is a reminder to trust your instincts and…
BE UNAPOLOGETIC IN YOUR ADVOCACY
The late disability rights advocate Dave Hingsberger said that when it comes to including people with disabilities, never ask permission because doing so implies that “no” is an acceptable answer.
Of course, most caregivers know that simply signing up and showing up can range from difficult to nearly impossible.
Advocacy is essential to ensuring our children are safe and receive the support they need.
Writer and mother Elvina Scott, whose eldest child has multiple disabilities and medical complexities requiring total care, says:
“I have to remind myself a million times over that there is NO WAY to do this ‘right’ or ‘well’ in an individualistic, impossible culture and society.”
Scott stresses that parents should never apologize for what their child needs and deserves.
“Securing basic services is an ASSUMPTION, not a favor,” she says.
Scott also uses an approach she calls The Graceful Hammer.
She’s polite and kind, expressing gratitude when things go well. But when necessary, she shifts into “hammer mode,” becoming an unapologetic force demanding what her child is entitled to receive.
While Scott is tough as nails, she also recognizes that…
EMPATHY HAS POWER
It is impossible to know what those around us are experiencing on any given day.
As much as we wish others would try to understand our journey, it’s equally important to ask ourselves whether we’re extending that same understanding to them.
For example, acknowledging how challenging teaching has become and offering to answer questions about your child’s IEP can help begin the school year with mutual understanding and a collaborative spirit.
Of course, it isn’t always that simple, which is why you should always…
PUT EVERYTHING IN WRITING
This advice is repeated over and over because it is that important.
Anything and everything regarding your child’s needs should be put in writing.
If you have a conversation, take notes and follow up with an email summarizing what was discussed so you have a written record.
This applies to early intervention, school, medical care, disability services, community programs, and beyond.
Create email folders or another organizational system that works for you.
You may never need those records.
You may need them years later.
Or you may need them tomorrow.
Either way, file everything away.
If paying for additional digital storage gives you peace of mind, it’s worth every penny.
Those emails—and maintaining an open line of communication—are also important for…
Advocacy often begins with a conversation. Building relationships with decision-makers helps create lasting change.
“Relationships create pathways to collaboration,” said Lisa Richard, Rural Outreach Specialist and Southwest Virginia Regional Coordinator with the Center for Family Involvement at VCU’s Partnership for People with Disabilities and mother of seven adult children.
“I worked hard in my community to volunteer in the school and be visible at sporting events for my children. It’s important to build trust with the professionals in the school, and showing up and listening was one way I could do that.
“I did not work outside the home, so I recognize not everyone has that kind of time. It did not always work, and there were teachers and professionals who were not receptive, so I learned a lot and made sure I attended events that taught me what my rights as a parent were.”
One disability rights advocate, professional, and parent—who asked to remain anonymous to protect their autistic child’s privacy—found it helpful to email the school counselor and main office each summer before major school transitions to request a building tour.
Not only did this help their child become familiar with the new environment, it also gave them both an opportunity to meet staff members before school began.
Jawanda Mast, Grassroots Advocacy Manager for the National Down Syndrome Congress and author of The Sassy Southern Gal, has conducted countless advocacy training sessions.
According to Mast, one of the most important things families can do is develop and maintain relationships with elected officials year-round.
Whether you voted for them or not, they represent you.
Introduce yourself, share your family’s story, get to know their staff, and stay in touch.
Even though much of our lives should remain private, sharing our everyday challenges can make a powerful difference because…
PERSONAL STORIES ARE POWERFUL
Most people simply don’t understand how difficult day-to-day life can be for people with disabilities and their families.
In fact, many of us become so accustomed to our own “normal” that we forget how different our daily lives are from those of other families.
Whenever you need to share your personal story as part of your advocacy, think about another family whose child is the same age as yours.
I often think of my brother.
His oldest child drives.
His children can stay home alone.
He and his wife can take vacations by themselves.
They don’t have to build transition time into every outing.
Our lives are dramatically different.
While I would never trade places, it’s okay to recognize that their journey is easier in many ways—and mine continues to become more complex.
I reflect on those differences when answering deeply personal questions to maintain my son’s services or when speaking with legislators about funding home and community-based supports.
It’s frustrating to repeatedly share intimate details about my son’s life.
Yet I’ve realized this:
Impactful advocacy creates a difficult dichotomy—in order for decision-makers to support our diverse needs, we’re often forced to share deeply personal details about our lives that would otherwise remain private.
Perhaps most importantly…
KNOWLEDGE IS POWER
As caregivers, it’s up to us to do the research.
Professionals know what they need to know for their jobs. Unless they have lived experience, it’s unlikely they’ll understand the full picture.
The reality is that parents often find themselves teaching teachers, doctors, therapists, care providers, and others.
Despite one in four Americans living with a disability significant enough to affect daily life, disability is still too often treated as a niche area of expertise rather than a natural part of the human experience.
Knowledge is power, but there is also so much to learn that we must give ourselves permission to pace the journey.
As Scott wisely says:
“The problems we face are so big, so long in the making, so massive to unmake. Go small and trust the impact. Do something that feels good to YOU. You deserve to not just work hard ALL the time. Your advocacy work can be something that fills you, fuels you, and restores you. There is so much need to fight, and yet important advocacy comes from joy and connection as well.”
And of course…
The love between you and your child.
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