Why It Can Be So Hard for Moms of Children With Disabilities to Work
Hi, are you a mom of children with disabilities? Well do I have something for you. There are days when I look at my life and wonder what kind of job I could realistically have. I don’t mean what I am capable of doing. I have worked, I have run a business for years, and I know how to learn new things, meet deadlines, manage responsibilities, deal with people, solve problems, and make money. The question is much more practical than that: what job can I reliably commit to when I am raising multiple children with disabilities who may need me at any time?
That is the part of the conversation I think gets missed. When parents like me talk about how difficult it can be to work, people are usually quick to offer solutions. Work from home. Find something flexible. Start a business. Sell digital products. Babysit. Take surveys. Become a virtual assistant. Maybe become a millionaire while you’re at it.
Most of that advice sounds reasonable until you actually look at what life can look like inside a family with children who have significant support needs.
Before I go any further, I want to make something clear because this matters: not every parent raising a child with a disability has the same experience. Disability is a huge spectrum, and two children with the same diagnosis can require completely different levels of support. Some children are fairly independent. They may attend regular after-school programs, stay with a babysitter, participate in summer camps, or eventually be able to stay home alone for short periods. Other children need much more hands-on support with communication, eating, dressing, toileting, safety, routines, behavior, medical needs, or simply understanding danger.
That difference matters when we talk about whether a parent can work. I don’t think it is helpful to say that parents of disabled children can’t work, because plenty of parents do. At the same time, it isn’t helpful to respond, “Well, my child has a disability and I work full time,” because that doesn’t tell us anything about another child’s actual needs. The diagnosis alone does not tell you what life looks like inside that home. The better question is: what level of care does this particular child require, and who is providing it?
Now add more than one child with disabilities to the family, each with their own needs, appointments, school schedules, therapies, and services. That is when the logistics can become complicated very quickly.
“Just work while the kids are in school”
I understand why people say this. On paper, school looks like a beautiful block of time. The kids leave in the morning, they come home in the afternoon, and surely Mom has all those hours available to work.
Except those hours are not always empty.
There are IEP meetings, evaluations, doctor appointments, specialists, therapy appointments, phone calls from school, forms that need to be completed, transportation issues, early dismissals, school holidays, sick days, and days when something simply goes wrong. When you have multiple children, those things don’t conveniently happen together. One child may have an appointment on Monday, another needs something Wednesday, Thursday brings a school meeting, and Friday somebody has an early dismissal. Suddenly the uninterrupted workweek everyone assumes you have isn’t very uninterrupted.
Therapy is another huge part of this. Speech therapy, occupational therapy, behavioral services, feeding therapy, physical therapy, and other services do not necessarily happen at convenient times. You don’t always get to ask for the nice 6:00 p.m. slot after everyone has finished work. Sometimes the appointment is Tuesday at 11:00 in the morning. Sometimes you have waited so long for an opening that when they finally offer you something, you take it because you have no idea when the next opening will be.
Then there are evaluations and follow-up appointments connected to those services. Sometimes you have to travel. Sometimes an appointment that should have taken an hour takes half the day. All of that time is necessary, but it is still time that is not available to an employer.
This is why “just work while they’re at school” can feel so disconnected from reality. Yes, my children are at school, but sometimes a good portion of those school hours is spent taking care of everything required to keep them supported.
Applying for help can become a job of its own
One of the parts of disability parenting that I don’t think people understand unless they have lived it is how much time it takes just to apply for services and support.
You don’t simply say, “My child has a disability and needs help,” fill out a page, and go on with your day. There are medical records, school records, IEPs, evaluations, releases, applications, assessments, letters, and forms that need signatures from doctors or other providers. Then you make the phone calls. You send the emails. You leave messages. You follow up. Someone tells you they don’t have something you know you already sent, so you send it again. Another office wants another release. Someone else needs updated documentation.
Now multiply that by multiple children.
I have had school days where a huge portion of my available time has gone toward paperwork, insurance, providers, services, appointments, and advocating for my children. Those are the very same hours people assume I could simply dedicate to a job.
Then, after spending all that time applying for something, you may wait months for an answer. Sometimes you wait six months. Sometimes longer. And after all the paperwork, phone calls, appointments, and waiting, the answer can still be no.
At that point, congratulations, you may have unlocked the next level of disability parenting: the appeal.
I joke because sometimes you have to laugh, but it really is exhausting. There are days when it feels like you spend an incredible amount of time proving to different systems that your children have the disabilities they have already been diagnosed with.
Sometimes I wonder what would happen if people without disabilities had to regularly prove they were still able-bodied. Imagine somebody calling and saying, “We understand you were capable of functioning independently last year, but we’re going to need updated documentation to make sure you’re still able-bodied.” Obviously I’m being sarcastic, but the frustration underneath that joke is real.
The paperwork is work. The phone calls are work. The appointments are work. The advocacy is work. None of it comes with a paycheck, but it can easily consume the hours people think are available for paid work.
When insurance says no, real life doesn’t change
Home health aide services are one example of how complicated this can become. When a child requires a significant amount of care, having additional support in the home could make a tremendous difference for a family. It could give a parent more ability to work, take care of other children, attend appointments, handle household responsibilities, or simply breathe.
But applying for support doesn’t mean you are going to get it.
An insurance company can review the records and decide that the requested service does not meet its criteria. A denial may say the child does not meet the required level of need, that the child’s condition has not worsened enough since a previous request, or that the type of care being requested does not qualify for that service.
The insurance company gets to make that decision based on its rules. What it cannot do is change what happens in my house after the letter arrives.
My child does not wake up the morning after a denial and say, “Good news, Mom. Insurance says I don’t need that level of help, so I’ve decided to become more independent.” I wish it worked like that.
The needs that existed before the denial are still there afterward. Someone still has to supervise. Someone still has to help with daily care. Someone still has to manage routines and safety concerns. A denial can determine what an insurance company will pay for, but it does not determine what a child actually needs at home.
And when Mom is the person filling that gap, that affects whether Mom can work.
That contradiction can be incredibly frustrating. A parent can be told that the child does not qualify for a requested level of support while simultaneously living with caregiving responsibilities significant enough to make ordinary employment extremely difficult. The paperwork may say one thing, but the care still has to happen.
Working from home doesn’t mean working whenever you want
Another suggestion parents hear constantly is, “Have you tried a remote job?”
Yes. We know the internet exists.
The problem is that a remote job is still a job. If a company hires you from 8:00 to 4:00, they generally expect you to be working from 8:00 to 4:00. You may have phone calls to answer, meetings to attend, customers waiting, productivity requirements, or a supervisor who expects you to be available. The fact that your desk is inside your house does not mean you can walk away every time someone needs you.
For many families, remote work is wonderful. Removing the commute alone can make life easier. But remote and flexible are not the same thing.
The type of flexibility some parents need isn’t, “Would you like to start at 8:00 or 9:00?” It is, “I can get this work done, but I cannot promise that nobody in my house will need me unexpectedly during these exact hours.”
That is a much harder type of job to find.
And then summer arrives
Even if you manage to build a routine during the school year, summer can completely change it.
Summer care for a child with significant support needs is not always as simple as signing up for the closest camp. You have to ask whether the program can actually support your child. Can they meet communication needs? Can they manage behavioral or safety concerns? Can they help with personal care if needed? Is your child comfortable in that environment? Is there an appropriate program nearby? Is there a waiting list? Can you afford it?
Now add multiple children and potentially different needs for each of them.
For some families, summer means the parent’s availability to work becomes very limited for several months. That can make it difficult not only to find a job, but to keep one. It is one thing to tell an employer that you have limited availability for a week. It is another thing to explain that your schedule may look completely different for an entire summer.
Please don’t tell me to babysit
I have to include this one because it still makes me laugh.
“Why don’t you babysit other people’s kids for money?”
So let me understand this correctly. I am explaining that my existing caregiving responsibilities make it difficult to hold a regular job, and the solution is to add more caregiving.
Apparently what my schedule was missing was somebody else’s toddler.
Babysitting can absolutely work for some parents, and there is nothing wrong with doing it. But this is exactly why generic “jobs for moms” lists can be so useless for families like mine. They don’t ask what is already happening inside the house.
If caregiving is the reason traditional employment is difficult, adding another child to care for is not automatically a solution.
“Just start a business”
This suggestion is a little different for me because I actually do own a business. However, I didn’t start my business because I was trying to solve the problem of working while raising children with significant support needs.
My business was already there before I understood what my family’s caregiving needs would eventually look like, and before I even had all of my children. That matters because I was not starting from zero while already overwhelmed with caregiving.
Starting a business from nothing takes an enormous amount of time and energy. You have to find customers, market yourself, handle email, bookkeeping, taxes, technology, customer service, content, sales, and all the other things that never make it into the cute social media posts about being your own boss.
Digital products are another favorite internet solution. I have digital products. I can tell you from experience that they do not crawl out of the computer while you sleep, find customers, and deposit money into your bank account.
You still need people to see them. You need traffic. You need marketing. You need customers who actually want what you’re selling. Creating a product and making meaningful income from that product are two very different things.
Sometimes I think the internet’s answer to every overwhelmed mother is that she should become an entrepreneur and build an empire. Maybe she doesn’t want an empire. Maybe she doesn’t want another business. Maybe she already has enough responsibility and simply wants a way to earn money without sacrificing her ability to care for her family.
That should be a reasonable thing to want.
Surveys aren’t the answer either
Then there are surveys, research studies, and website testing. Yes, you can make a little money from some of these things. No, I don’t think we should pretend they are a solution to a family’s need for meaningful income.
If I’m trying to figure out how to contribute financially to my household, a few dollars for answering questions about cereal isn’t exactly the economic breakthrough I was hoping for.
There is nothing wrong with doing these things for extra spending money. What bothers me is when they are included on lists of “great jobs for special-needs moms” as though they solve the larger problem.
They don’t.
Childcare isn’t always a simple answer
Another obvious question is, “Why don’t you just hire someone?”
For some children, finding a caregiver isn’t simply about finding a responsible teenager in the neighborhood. The person may need to understand communication differences, behavioral needs, personal care, feeding, routines, safety concerns, or other individual needs.
If you have multiple children, one caregiver may be managing several different sets of needs at once.
Then there are the practical questions. Is this person available when I need them? Can I trust them? Are my children comfortable with them? Can they safely manage everyone? And how much does it cost?
That last question matters because eventually you have to do the math. How much does the job pay, and how much are you paying for the care that allows you to work? For some families, the numbers make sense. For others, they don’t.
That is why there is no one easy answer.
I don’t have all the answers, either
I wish I could end this article with a perfect list of jobs that work for every mom raising children with disabilities. I can’t, and I don’t want to insult anyone by pretending I can.
The truth is that I am still figuring things out too.
I have applied for help and been denied. I have dealt with paperwork, insurance, schools, appointments, services, and all the other things that come with making sure my children have what they need. I don’t always know what the next step is when something goes wrong.
What has made a huge difference for me over the years has been guidance from other moms who had already walked through some of these situations.
Sometimes another mom knew what question I needed to ask. Sometimes she knew about a service I had never heard of. Sometimes she helped me understand a process that made absolutely no sense the first time I looked at it. And sometimes I simply needed someone who understood why I was frustrated and could help me think about what to do next.
That support has helped me continue working while also making sure my children have the right schools and services for their needs. It hasn’t made everything easy, and it certainly hasn’t meant I never hear the word “no.” I still get denied. I still get frustrated. I still have days when I wonder how I’m going to get everything done.
Then I get up and keep going.
That experience is part of why helping other moms matters so much to me now.
I am not interested in pretending I have every answer, because I don’t. I also don’t think parents need another person telling them what they should have done differently. Sometimes what helps most is having someone listen, help you organize everything that is happening, talk through the options in front of you, and help you figure out what your next step might be.
That is also an important distinction between coaching and therapy. They can both be valuable, but they serve different purposes. If you’re wondering what that difference looks like, we explain it more in Coaching vs. Therapy: Understanding the Difference.
At Embrace Ur Journey Coaching, we want to understand what parents and caregivers are actually struggling with before we assume we know what they need. We are still building our services around real people and real experiences, which is why your voice matters to us.
If you are a mom, caregiver, or adult who feels like you are trying to hold everything together while figuring out what comes next, I would love for you to take our survey. Tell us what you’re dealing with, what kind of support would actually be useful, and what you wish someone understood about your situation.
There is no perfect answer for every family. Your child’s level of disability matters. Your family’s support system matters. Your access to appropriate childcare matters. Therapies matter. Appointments matter. School schedules matter. Your other children’s needs matter. Summer matters. All of those things affect what is realistically possible.
I think sometimes we spend too much time asking mothers, “Why don’t you just find a way to work?” and not enough time asking why there are so few meaningful employment options for people whose caregiving responsibilities don’t fit neatly into a traditional work schedule.
And when families seek help, the systems around them don’t always fill that gap either. Insurance can deny services. Programs can have long application processes, long waits, and their own eligibility rules. Employers can require predictable availability.
None of that makes a child stop needing care.
For moms living this reality, I don’t think the answer is another stranger telling us what we should be doing. Sometimes the better place to start is with someone who actually understands that life can be messy, listens to what is really happening, and helps you sort through what is realistic for your family.
There may not be one perfect answer. I certainly don’t have all of them.
But I do know how much it has meant to me when someone who understood reached back and helped me keep going.
I want to be able to do the same for someone else.
