What You Need to Know About Raising a Special Needs Child

Parenting a special needs child comes with unique challenges, and at times, it can feel overwhelming and isolating.

Whether you’re adjusting to a new diagnosis or navigating ongoing needs, you’re not alone. An estimated 18.5% of children in the U.S. under age 18 have special needs (PBWS Law), and many parents share your concerns about the future.

This guide offers clear, practical advice to help you advocate for your child’s education, understand their medical needs, and find the right support systems. With the right knowledge and resources, you can approach each step with more confidence, knowing that your child is valued, capable, and never alone.

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Why Getting the Right Diagnosis and Medical Support Matters

You know something is different about your child, but figuring out exactly what’s going on can be frustrating. A diagnosis isn’t about labeling them. It’s about getting access to the right therapies, school support, and medical care to help them thrive.

The first step for families of children with special needs is to get the right diagnosis for their little one. That’s the only way to know if they need extra support, such as early intervention services or an individualized education program.

Since developmental disabilities and delays come in many forms, it’s important to let an expert determine the cause. Could it be cerebral palsy, Down syndrome, or an autism spectrum disorder? Or maybe it’s a speech delay, ADHD, or a learning disability? Getting the right answers early on can make a big difference in the support your child receives.

Doctors and specialists like pediatricians, neurologists, and psychologists can help piece things together. If you’re not getting straight answers, keep pushing. Ask more questions, seek a second opinion, and find professionals who actually listen. No one knows your child better than you do.

Once you have a diagnosis, finding the right medical team is just as important. Therapists, doctors, and educators can guide you through treatment options and everyday strategies that actually help. If something doesn’t feel right, trust your gut. You’re the best advocate your child has.

plans change

When I met my husband 15 years ago, I was a college freshman with big plans. I would complete a master’s degree in accounting, become a Certified Public Accountant, and get a high-paying job. I wouldn’t have to worry about money as my parents had, my kids would be able to play elementary school sports, and life would be busy but typical as I worked full-time.

Then, when I was 21, I was diagnosed with Crohn’s disease. My health demanded that I scale back my goals. I then planned to work as some sort of staff accountant, not a CPA, to reduce stress. I still wanted to work full-time, rather than become a stay-at-home mom when our kids eventually arrived.

I’ve always wanted to be a mom, but I never wanted that to be my only job. Honestly, I’m not great at connecting to kids other than my own or making them my sole focus. I like using my brain for something beyond childcare. Raising children is a huge, important job… but I wanted more.

Today, I am a stay-at-home mom. It would be nearly impossible for me to work a traditional 9-5 job, let alone the extended hours my dream job would have demanded. I built up a virtual bookkeeping business, and now this blog and podcast, during naptimes and after bedtime. My work allows me to be present for my girls but also use my brain still.

and change again

In 2015, I was happily pregnant after an early miscarriage the summer before. We went in for our 20-week ultrasound on St. Patrick’s Day. That’s when everything changed.

After the radiology technician became very quiet, a doctor came in to say there were irregularities with our baby’s brain and spine. We traveled 2 hours to see a maternal-fetal medicine specialist the next day, where our daughter was diagnosed with myelomeningocele spina bifida and hydrocephalus.

Part of her spinal cord had grown outside her body, causing a build-up of fluid in her brain. Although the diagnosis wasn’t life-threatening, it was serious. We were completely unprepared for life-altering news like that but still optimistic.

It was “just” spina bifida. A wheelchair isn’t a big deal. We could handle it.

upheaval

A few weeks later, we flew from Montana to Philadelphia, where we were told our baby didn’t qualify for the fetal spinal repair surgery we sought. As we discussed our options, one doctor told us, “if you’re lucky, your baby will have a personality.”

If you’re lucky, your baby will have a personality.

We spent nearly 3 months over 2100 miles from home, waiting for our sweet girl’s birth, surgeries, and NICU stay to be over. I spent the time researching, calling spina bifida clinics in our “region,” and trying to prepare for our new lives. My husband’s employer was amazing, offering him the time off too so we were together.

Our families hosted fundraisers to help pay for our increased expenses and decreased income. We were able to save enough to cover medical co-pays for the first few years too. Don’t even get me started on the financial side of health care and insurance in this country; my experiences have pointed out so many shortcomings in the current system.

We decided I would quit the job I didn’t love, so I could become our daughter’s caregiver. There were literally no qualified daycares for a child with her needs. No centers would even consider accepting such a medically complex child… another travesty in our system. Parents of children with disabilities are still entitled to outside occupations and respite time.

Our daughter’s first surgery happened when she was just 20 hours old, with a follow-up a week later. We couldn’t hold her for the first 48 hours, which was so much better than the 3-4 days we were told to expect.

It was terrifying to hold that tiny baby, less than 5 pounds while working around all the tubes and cords attached to her.

Getting the Right Support at School

Once you have a diagnosis, the next step is making sure your child gets the right help at school. The process can feel overwhelming, but knowing what’s available makes a big difference.

For a younger kid, you’ll be able to find a statewide early intervention program that offers therapy and other support services before school starts.

Once they reach school age, your school district can evaluate them for special education services under the Disabilities Education Act. This might include speech therapy, occupational therapy, or other educational services tailored to their unique needs.

Every child learns differently, so it’s important to speak up if something isn’t working. Your child’s teacher should be involved in making sure they get the right additional services in the least restrictive environment possible. If the school isn’t following through, push for changes.

mother pointing at a book with her child while lying on the bed

parenting a child with disabilities

Over the next year, we adjusted to being new parents, but also

Physical therapy
Occupational therapy
Speech therapy
Catheterizing a 3 month old
EEGs to monitor seizures
Infantile spasms, a form of epilepsy
3 life flights out of state, complete with my husband driving through the night to be with us
A shunt revision (brain surgery)
Failing more than one epilepsy medication

During one hospitalization for uncontrolled seizures, the on-call neurologist looked at our 11-month-old who was literally either seizing or sleeping for a week, and said “this could be her life.”

That day was the only time I’ve ever feared we’d lose our girl. Even if she survived hours and hours of seizures, what would her life be like? Would she ever walk, talk, or ride a bike?

So far, the answer to all of those questions is no. And that’s OK. She doesn’t have to speak verbally to convey sarcasm and humor.

Before he met my daughter, my sister’s boyfriend didn’t believe her stories about how my daughter could non-verbally crush an adult’s spirit. Once he met her, he understood. She refused to eat a single bite he offered her on our road trip, even though she was obviously hungry and he kindly offered to feed both the girls. Instead of accepting the food, she would open her mouth, turn her head away, and smirk.

She is sassy, sarcastic, and so smart. I would call her an expert at finding innovative ways to avoid the work she doesn’t want to do. Her life is never going to be easy or typical; she’s going to have to fight and persevere. I would do anything to make her path easier

today

Today, we also have a two-year-old daughter. She loves her big sister more than anyone and happily helps with her care where she can. This summer, she’s learning to hold doors open for her sister’s wheelchair and how to push the handicap accessible buttons on automatic doors.

Today, I am still feeding my six-year-old. She can’t feed herself. I am still pushing her in a wheelchair, picking her up to move her, and bathing her in a special chair.

Today, I’m still catheterizing her multiple times a day, coordinating speech, physical, and occupational therapy appointments as well as ABA therapies for her autism diagnosis. She sees over 20 medical professionals.

I am still fighting our health insurance company to ensure my girl has what she needs, working with her school to make sure she’s safe and cared for, and monitoring her medications, sleep, and seizures. We still travel out of state at least once a year for specialist care, an 800-mile round trip.

parenting a child with disabilities changes you

Having a child with complex medical needs or disabilities is hard. It’s exhausting, never-ending, and scary. We’re planning for our daughter to live with us for the rest of our lives. Our whole family fights for every bit of independence she gains.

My daughter has made me hard, laser-focused, stubborn as hell. My job now is to care for her, but also to advocate for her. I have to make sure she gets the services and treatments she needs… in a way we can afford.

Most days, I feel like I’m winging it. I follow a basic routine of medications and medical interventions, but I’m just making up the rest of my parenting. I’m lost when it comes to my two-year-old. I don’t really know how to potty train her or discipline her, even though I have an older child. It’s unsettling to be both a new mom and an experienced one.

That’s why the team of therapists and doctors who support my older daughter are also helping me raise my younger daughter. They’re the ones I turn to when I have a question about typical development or what to expect.

I know so much about parenting a child with disabilities, about medical complexities and genetic mutations, and durable medical equipment. I know much, much less about parenting a typically developing child and no longer have the time or will to read parenting books.

You Don’t Have to Handle the Financial and Legal Side Alone

You already have a lot on your plate, and the financial side of raising a child with special needs can feel overwhelming. The good news is that there are programs that can help. Supplemental Security Income (SSI) provides financial support for children with disabilities in low-income households, and some states offer additional assistance through Medicaid waivers and other federal programs.

You might also need to think about long-term planning. A special needs trust allows you to set aside money for your child’s future without affecting government benefits like Medicaid or SSI. Another option is an ABLE account, which lets you save tax-free for disability-related expenses, though there are contribution limits and eligibility rules.

You also have legal protections on your side. The Individuals with Disabilities Education Act (IDEA) guarantees special education services through an Individualized Education Program (IEP) for eligible students, while Section 504 of the Rehabilitation Act ensures that students with disabilities receive necessary accommodations in federally funded schools.

If all of this sounds complicated, your school district, local social services, or a disability advocate can walk you through the application process and help you figure out what your child qualifies for.

Take Care of Yourself as a Parent Too

You give so much to your child’s special needs, but your well-being matters too. The stress of navigating therapies, school meetings, and medical care can wear you down if you don’t take time for yourself.

Support groups, both in person and through social media, can connect you with other parents who understand what you’re going through. Finding good friends who support you makes a huge difference. If you’re feeling overwhelmed, counseling or parent training programs might help you manage stress and advocate more effectively for your child.

You don’t have to do everything alone. Lean on family, friends, and support services when you need a break. Taking care of yourself helps you be the best parent you can be.

Connect With the Right Community and Support

You don’t have to figure everything out alone. Connecting with other parents, advocacy groups, and local resources can make a huge difference in navigating life with a child who has special needs.

Look into local and national organizations that offer guidance, legal advice, and financial assistance. Many communities have parent-led groups where you can share experiences and get real-world advice. Online forums and social media groups can also be helpful, but make sure you’re getting information from trustworthy sources.

Schools, therapists, and your child care provider can often point you toward helpful programs. The right support system can make all the difference in making sure your child’s needs are properly met.

Know Your Child’s Legal Rights

Laws protect children with special needs in school, healthcare, and daily life. Understanding these rights helps you advocate for the right support.

Public schools must provide appropriate learning plans, like an IEP or 504 Plan, and offer support in the least restrictive environment.

Legal protections also cover healthcare access and disability benefits. If you face challenges, disability advocacy groups or legal experts can help.

Plan for the Future

You want your child to have the best life possible, not just now but in the years ahead. That means thinking about long-term care, financial planning, and legal protections.

A will and a legal guardian plan can ensure your child is cared for if something happens to you. Some families set up a special trust to manage finances without affecting eligibility for government benefits. Looking into programs that offer long-term support can also help you prepare for adulthood transitions, like job training and independent living options.

It’s never too early to start thinking about the future. The right planning gives you peace of mind and helps secure the best opportunities for your child.

Trust Yourself as a Parent

No one knows your child better than you. Doctors, teachers, and therapists have valuable insights, but your instincts matter too. If something doesn’t feel right, whether it’s a diagnosis, a school plan, or a therapy approach, speak up and ask questions.

Advocating for your child can be exhausting, but your persistence makes a difference. Keep learning, connect with others who understand, and remember that you are doing an incredible job improving your little one’s quality of life.