This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.
This is the final week in a 3-week series on parenting observations. Week one is based on gentle parenting, week two is about parenting with compassion, and week three is about parenting with a disability.
These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my own research and conclusions as possible suggestions for others out there; therefore, these posts will be as objective as possible. When it comes to parenting: if the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgment.
For many people, parenthood is fraught with challenges: getting enough sleep, the terrible twos, and the need for independence as children grow older. For a select few, there is the added challenge of balancing parenting and a disability of some sort.
Parenting without a disability is difficult, and parenting with one presents its own unique challenges. With some adaptations, parenting with a disability is no harder than parenting without one. Remember: it’s comparing apples and oranges; each type is challenging and straightforward in their own ways.
The key is to know what the limits are, having a support system of some sort to help manage those limitations, and keeping everything in a proper perspective.
In the final week of my parenting series, this week will be based more on observations from my own experience coupled with resources found online. If you are a parent with a disability, you may see some similarities in your situation. Hopefully, this will provide some validation to your experience.
Nota bene: This post will be using the universal “you/second person” pronouns throughout, so it may not speak to your experience directly.
Visible versus Invisible
There are two different types of disabilities out there: the ones you can see and the ones you cannot. For people with invisible disabilities, this can lead to a lot of issues, mainly if a person looks “normal” but uses a handicap parking space. A person does not need to be in a wheelchair, despite the universal logo, to be disabled.
Multiple Sclerosis can be both: for those with PPMS and SPMS (and at times, RRMS), it’s a more visible disability. The person can use a cane, walker, or scooter. It can be abnormal speech patterns, cognitive difficulties, or physical weakness. The outside observer can see the disability.
But many with RRMS don’t display outward symptoms of their diagnosis. Yet, the disability can still be there: fatigue, mental fog, or pain. Flare-ups can cause limb weakness or numbness, which several limits mobility for a short time.
When it is hard to see the disability, it is hard for outsiders to understand the extent of the disability. This can lead to feelings of frustration, inadequacy, and self-doubt by the person with the diagnosis.
Parenting with an invisible disability adds an additional layer of complications: sometimes, it’s hard to make playdate plans because you don’t know how you might feel that day. You may not remember simple details about your child’s life, and therefore seem disengaged with the parenting process from the outside. None of these reasons make you less of a parent, it just alters how you parent.
Ultimately, for those with an invisible disability, they can spend part of their day mentally preparing for outside judgment because people might not know or understand the situation. Outside judgment isn’t a daily occurrence, but when it happens, it stings because you are left feeling inadequate.
Know your Limitations (and be OK with them)
Every parent, disabled or not, has limitations.
For some, it’s listening to a child scream non-stop for 20 minutes until saying, “no more.” For others, it may be the simple act of getting children out of bed and dressed in a reasonable amount of time.
With a disability, the limits can range from physical, emotional, and mental. It’s different for everyone depending on the extent of their situation.
For me, I can’t go an entire day watching Jai without having at least 30 minutes lying in bed during his naptime. I don’t necessarily have to sleep, but I need to lie down and not move or think about anything. This can be very frustrating because there’s so much I know I could do in that free time that would be more productive.
Remembering that everyone has limitations (disabled or not) helps normalize an otherwise abnormal situation. It isn’t about what you can’t do; it’s about recognizing the extent of what you can do.
The serenity prayer comes to mind:
…grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.
Knowing what you cannot change, the disability and its manifestations; and, knowing what you can change, how you deal with it, helps lessen the parental guilt. It allows the mind to be receptive to adaptive alternatives and being okay that parenting might not look like everyone else’s.
While I am frustrated at my need to take a 30-minute rest and not be productive during that period, I am actually being the most productive in that time. I am giving myself a chance to recharge so I can give my son more when he wakes up from his nap.
If I spent that time cleaning, writing, or something else, I wouldn’t be able to take care of him at the levels I know I am capable of handling. I might get more frustrated with him or myself and exacerbate a situation that could easily be handled otherwise.
Asking for help goes a long way to bridge the gap between limitations and abilities.
One of the first things a person is told after getting a diagnosis is to develop a support system. It can be parents, partners, close friends, or other loved ones. Parenting classes say similar things to all new parents: develop your support system as it will help alleviate the stress of a newborn.
It isn’t always possible to have an extensive network of support, if one at all, but it is essential to find ways to adapt and fill in the necessary gaps. There are plenty of resources available from the local government to parent groups that can help develop a support system.
I have a hard time asking for help because I am afraid people will think I am taking advantage of them. This may not be the case, but my ego gets in the way and prevents me from asking for help frequently.
If you have a supportive partner, work with them on developing a schedule and distributing the workload more evenly. It may not work out correctly, but if your fatigue levels are low in the evenings, arrange for your partner to take the little ones while you take a breather if only for an hour.
Part of the issue might be that when dealing with a disability, there is a distinct lack of personal control. You have no control over your mind, body, or emotions at times. When working with external tasks, there’s a chance to regain control, which may be hard to re-relinquish to a partner or friend when needed.
It boils down to being okay with the help and doing what is best for the child. That may take different forms, but having a support system to adapt your parenting will lighten any physical or mental burdens.
The most important thing for any parent, disabled or not, is to maintain a positive perspective. This isn’t possible all the time, so allow yourself to have bad days guilt-free, but when you can, the power of positivity can boost your overall health.
It is also important not to allow yourself to be defined by others’ expectations and judgments. What works for you may not work for someone else, and that is okay. Every person is different in their own way, so why would parenting be the same across the board?
Comparing your abilities as a parent to someone else, able or not, is a recipe for mental and emotional disaster. There will be good days and bad days, and remember, most people are only going to show you their good days (or fake them if they are actually bad days). Trying to compare yourself to another person’s projection of their “best life” will not help improve your situation.
Your disability does not define you.
I continuously tell myself that I am a woman who happens to have MS, not a woman with MS. There may not be much of a distinction, but as a person who gets hung up on semantics, it’s big enough to keep me going. I am not my MS, and my MS is not me.
Most importantly, do not be hard on yourself when you don’t measure up to your expectations. Be gentle and understanding to yourself and practice self-compassion as much as possible. Say what you wish people would say to you or you would say to a friend in an identical situation.
Keep this in mind and hold onto it every day.
When I originally wrote this post, I was a parent for about a year-and-a-half. Now that I am three years into parenthood, no longer dealing with a baby but a toddler, my perspective hasn’t changed in how I approach parenting with MS. I think I reinforced some of the ideas I discussed in this post, back in 2018.
I think I am more focused on taking time for myself than I was before, but that has to do with Jai’s level of independence. He doesn’t rely on me in the same way he did back in February 2018, so I am not hovering as much as I did. I’ve relaxed because I am more comfortable with the little human’s abilities.
Ash and I co-parent, but we parent mostly in shifts now. I get Jai during the day while Ash is at work, and in the mornings/evenings when Ash is home, he takes over. The weekends are mostly Ash’s time, as well. I felt terrible with this arrangement at first, but I realized that these were Ash’s chances to have the same one-on-one interactions I get during the week.
This arrangement works best because of the quality time the two get, but it gives me a chance to rest and recover if needed. If Ash needs me to hop in, I do so immediately. We try to do family activities on the weekend and play together when my energy-levels allow for it.
While I am managing my MS better than I was nearly two years ago, it’s still invisible and frustrating. Jai’s in school a few days a week to give me a break, and so he can socialize, but it now puts me in direct contact with other parents. Seeing the level of involvement and energy of these other parents always makes me feel somewhat inadequate.
Jai’s school requires a level of involvement to maintain involvement, so I found ways to work with my MS rather than overextend myself. I have skills with website work, so I offered to help revamp their website. I am great at organizing, so I helped organize a section of their yearly fundraising event. But when Lytton started having his health problems, I had to be honest with his school and myself and pull back while I engaged in self-care.
Fortunately, Jai’s school was utterly understanding, which helped reinforce the importance of asking for what I need. I initially had the fear that they would reject my need to pull back, but they told me to take as much time as I needed. The old adage rang true once again: the worst they could say is “no,” but it never hurts just to ask.
I still try to keep my MS from defining me or how I parent. While I do have days where I struggle to get out of bed, I try to figure out how to manage around my MS. On Wednesday, I will be re-visiting a post I did on this very thing: adaptive parenting.
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Featured Photo Credit: Michelle Melton