Working When You Have A Child With A Disability

An article recently came out that shows that “Families of Children with Special Needs See $18k in Lost Income Annually”. People who commented on the article on social media seemed to disagree.  They think it’s much more.

It goes on to say that “Nearly 15% of families with children who have chronic health conditions including autism, epilepsy and cerebral palsy have scaled back their participation in the workforce. That figure jumps to more than 40% in families of children with intellectual disability.”

I have a child who has an intellectual disability and epilepsy. 

My freelancing business brings me a huge amount of passion and satisfaction, and I can’t imagine living without it. It allows me the flexibility to ride the flows of my daughter’s medical needs or emergencies that may come up.

But, if that isn’t you, you probably wouldn’t be on this website.

Many mothers of kids with special needs feel like they don’t have an option. This alone is a big motivator to me and why I do what I do. 

According to this article , parents of special-needs kids assume they’re less desirable employees. They’re wrong.  Just think of the skills that having a child with a disability or special health care needs brings to the table.  Goal setting, prioritization, ability to get more done in a shorter amount of time, persistence…

Then why do many parents drop out of the workforce?

It can be exhausting.  I’d say by far, it’s because we need flexibility. If you want to continue in the workforce, have flexibility, and bring in income, here are some steps to help you find your way.

FIND SOMETHING YOU’RE PASSIONATE ABOUT

When you have a child with a disability or special healthcare needs, it can feel like you’re needs and desires are on the back burner. Finding something that you’re passionate about is a great way to remember that you are a person living your own life and a reminder to live the best one you can.  You deserve to live a life where you are passionate about what you do on a daily basis.  That fuel will get you through difficult times.  

FIND SOMETHING FLEXIBLE

The key is to find something that allows you to work remotely and the ability for you to set your own hours. 

Doing something like freelancing or starting your own business allows you to choose your own pace and set your own hours.    If you’re not ready for that, starting a little side hustle may be the perfect solution. A side hustle doesn’t necessarily need to be “on the side” of a full-time gig.

Now, you still have to do the work, of course.  Here’s where having a backup plan and leaving space in the margins will come in.

I’ve had to stay with my daughter in the hospital numerous times.  I always bring my computer so I can keep up with action items.  I don’t get as much work done as I typically would, but I can prioritize what’s necessary and can keep in touch. 

I don’t have to “take a day off” when these things happen (although I could).

What I have found to be very important is to keep white space in the margins.  In case you’re not familiar with this term, it’s the idea of not filling up your entire calendar so much that if something like this happens, you can’t recover.  If you leave space in the margins and one week goes sideways, the idea is that you still have enough space in the following week or so to catch up.  This is critical when you have a situation where things can happen quickly.  I’ve learned this the hard way, and to be honest, it’s still something I struggle with.  

GET SUPPORT

Yes, I know. The lack of support is why many parents leave the workforce to begin with.

But, it’s out there. It can be difficult to trust someone with your child.  Think outside the box.  Can you find someone to help while you’re working from home?

Look into respite and IHSS programs in your state. Even if you do find resources to assist, it can be very difficult to find someone. This is especially true if you’re a single parent.

LET GO OF THE GUILT

You’re not a bad parent because you are invested in yourself as well and invested in living your best life.  It is the only one you’ve got.  

You can be a great parent AND have a career.

I cringe when I hear things like “I chose my family over work.” or “I want to be there for my child.”  I’ve been in all of the scenarios.  I’ve been a stay-at-home parent, worked at a full-time job when they were little, I’ve worked full time, and I’ve owned my own business.  I can tell you with 100% certainty that I am happiest doing what I do now, which is to own my own business.  That’s because I am doing something that I am passionate about while having the flexibility that I need.

The “Choose this or that” mentality is not a healthy one. Let’s not contribute to the idea that a choice must be made and that by choosing to have a career, you’ve chosen something else over your family or your child, or that you are less of a mother.

I don’t typically miss out on important things because of work. However, last month I missed out on Halloween.  

A was NOT happy when she found out.

I decided to make the best of it. I planned a neighborhood glow parade and party the night before Halloween. It was A BLAST. I got to celebrate Halloween with my family (as Cruella de Ville!), and she got to go trick-or-treating on Halloween night with a friend on her own, which she was super excited about.

It all worked out. No guilt needed.

My freelancing career is my happy place.  It’s where I can be me. Where disability doesn’t define me.

I want you to find your happy place.