Being a parent has been one of the most rewarding and fulfilling experiences of my life. However, as a disabled parent, I sometimes struggle to find ways to balance medical appointments, content creation, the many other activities my child takes part in, and household duties. Often, disabled parents have to overcome many challenges in order to manage family and medical issues. Today, I will talk about some of these challenges and how to overcome them.
Finding ways to adapt to day-to-day life
One thing that people with disabilities or chronic health conditions learn to do is adapt their life around their limitations. However, no matter how much of a handle someone has on day-to-day functioning before kids, it will change once tiny humans get thrown into the mix.
What works for each person will vary, but trial and error is the best way to work through this. My disability can vary in severity, so I have had to not only figure out how to do things in a way that works for me but I have also had to be flexible because something that works one day may not work another day.
Financial struggles
Being disabled can be extremely expensive. There is medicine to buy, copayments to make, and often things disabled people need most are not covered by insurance. People are often limited to whatever their spouse makes or what little they may get through social security. While many disabled people do hold some sort of job, others cannot do that.
Finding and keeping a job when a disability or chronic illness keeps you from attending work regularly can be impossible. Some people succeed in starting their own businesses to work hours that will work for them. Other people are able to budget and make their spouse’s income work for their household. Unfortunately, in the United States, people who depend on Medicaid to cover essential medical expenses are not allowed to save money or accumulate assets without risking losing the support services they need. This is something that can only be overcame with significant policy changes.
Interacting with other parents
It can be challenging for disabled parents to find friends with kids in the same age range. Between being the subject of misunderstandings or prejudices against people with disabilities and simply not having the energy to get to know other parents, making friends with parents you meet through your children can be frustrating.
I had more friends before I became a parent because I had the flexibility to spend a lot of time with people older than me who understood my health struggles. I have been blessed to find several wonderful moms with disabilities or chronic health conditions to get together with, but I still feel a bit out of place with moms I meet through activities and school functions.
Try to remember that it does not matter if someone completely understands your health conditions or limitations right away. A friendship can form if you share hobbies, favorite places, or interests. As you feel more comfortable with that person, you will naturally start to open up more about your struggles and limitations.
A lack of accessibility in child-focused spaces
So many places that attract children are not very accessible. Things like parks, indoor play spaces, and arcades often tend to be hard to navigate for people with mobility aides. Many places designed for children are also very loud and colorful, which can cause sensory overload for neurodiverse parents.
Sadly, very little can be done about spaces that are not currently accessible. If you have the energy, you can contact the person who runs the place and suggest changes for future renovations, but that won’t make much short-term difference.
You can choose to spend your time and money at places that value inclusivity. When I find a location that goes above and beyond to ensure everyone can enjoy their services, I will visit more than once and let others know about it using my YouTube Channel. I also make it a priority to donate to organizations that fund parks with handicap-accessible equipment.
Finding a social support network
As a disabled parent, it is easy to feel left out of parenting groups. Many people don’t understand disability and how it affects every part of life, including how someone parents.
It can help to find a few social network support groups for disabled parents. There are also organizations that cater to the needs of disabled individuals that have in-person gatherings. One of the best ways to find these organizations is through a search engine.
Balancing both their and their child’s needs
It is not easy for a disabled parent to balance both their and their child’s needs. We must ensure that we can take care of our children without sacrificing our health. One way parents can do this is by creating a written list of things they need to do daily. This way, parents with limited energy or physical abilities can plan how they will get everything done each day while still fitting in quality time with the kids and a little time for self-care.
Finding emergency childcare
Childcare is often expensive. In many families with one parent with a disability, only the parent without a disability can work. Parents with disabilities are often more prone to injuries and hospitalization, so finding a reliable source of emergency childcare is essential.
Some bigger cities have daycare centers that offer overnight and emergency care, but building a support system is essential if that is not an option. Making a note of what family members and friends are available and willing to help at different times can be helpful when planning for emergencies that may come up. It can be stressful to figure out who will care for a child after a hospitalization has already occurred, so having written plans can help things go a little smoother when things get rough.
Adapting to inaccessible housing
If someone becomes disabled after they moved into their current home, it’s likely not as accessible as they need it to be. This is something that I’m currently facing, and it may be the most frustrating struggle on this list. Before becoming a parent, a house with accessibility issues can be rough, but it becomes even more of an issue when a tiny human comes into the house.
As with many issues on this list, planning is essential. I suggest finding the room or area of the house that is most accessible and doing as much as possible in that space. For example, I struggle with steps, so I set up a changing space and clothing storage downstairs to minimize the number of times I’d have to carry my daughter up and down the steps each day. Now that she is older, she can walk up and down the steps independently, but I still use the clothing storage setup to minimize how many times I have to use the steps in a day.
Making and attending medical appointments
It can be challenging to make and attend medical appointments, especially when you are a parent. Keeping little ones busy while waiting with you at the doctor’s office can be hard. It can also be hard to get an appointment time that doesn’t interfere with drop off or pick up when you have school-aged children.
Having doctors whose appointment times match up with your available hours makes things so much easier. For example, if Friday is the only day you have reliable childcare, but a doctor is unavailable that day, it may be easier to find someone else. If you can’t find a new doctor or really like the one that doesn’t have a compatible schedule, bringing books, something to color, or a tablet can help make time in the waiting room easier for your little one.
Spending time away from their child
Often, parents with a disability have chronic health issues that put them in the hospital or force them to travel to get medical care from specialists. Tiffany, who co-writes the blog Saving Talents with her husband, is a homeschooling mother of four. She writes, “I’ve had Crohn’s disease for more than 12 years, and I’ve been hospitalized over 40 times during that time. The most difficult thing I face as a disabled parent is having to turn my children over to others for days at a time when I’m in the hospital.”
When asked what she does to help both herself and the kids during these hospitalizations, she answered that she has simple gifts ready for the kids in order to keep them occupied while they’re watched by someone else, video chats daily, and has a Build-A-Bear for each child with a recording of her voice so they can squeeze it and hear her tell them how much she loves them when they get sad.
There are many problems that disabled parents face. Some are physical, some are emotional, and some are social. Disabled parents often have to navigate a world that was not designed with them in mind.
I’d love to hear from you! Are you a disabled parent? If so, what is your biggest challenge? What ways have you found to work through it?
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