parenting-with-a-disability

Parenting with a Disability

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 parentingweek 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.

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learning-to-manage-expectations

Learning to Manage Expectations

Learn to manage your expectations.

It’s one of the first things your healthcare specialist says to you after receiving your diagnosis. While my neurologist never explicitly said it to me, it’s implied. Granted, they have high expectations for my wellness, often higher than I had for myself. But when I was in the hospital, pre-diagnosis, that was one of the first things the hospital neurologist said to me in response to my health concerns.

Whether it’s been said or not, it’s something we learn quickly with a chronic illness. We must manage our expectations because we have no choice.

For many of us, we have the following expectations in life: we’ll be healthy, achieve personally, and go far professionally. Often these expectations get scrapped in favor of coping with a chronic illness diagnosis. We might have pain to manage that prevents certain exercises. Our fatigue gets to be too much that we cannot do the same personal tasks we once did. Or our workplace can only accommodate our illness so much before we see colleagues surpassing us.

The expectations we once had slip away and we feel nothing but discouragement. But do we have to let those expectations go?

John Gary Bishop says in Unf*ck Yourself that we should “expect nothing, but accept everything.” It’s perhaps the healthier way to approach the “manage your expectations” conversation. We should scrap all the expectations we have for ourselves and accept whatever life sends our way with an open mind.

This refers to the positive and negative expectations we place upon ourselves.

Why We Set Expectations

Why do we even set expectations in the first place?

In childhood, expectations are placed upon us and for us. Parents might expect us to take on a level of responsibility around the house, or they might share their desire to see us succeed when we become adults. We extrapolate this external expectation and internalize it for what we think we’re capable of doing. Expectations drive our dreams and our desire for achievements.

But rarely are limits placed on these expectations, and as a child, why should it be limited? We imagine being firefighters, doctors, and presidents as our career goals, not wanting to pick between the three. We expected to achieve anything, especially when told we can be whatever we want when we grow up.

Illness or not, we learn quickly that there are limits to our expectations. Not all of us will get into an Ivy League school. We will have to choose between a firefighter, doctor, and president for a career, if only to pick one to focus on at a time.

Life will not work out the way we expected. And then we get our diagnosis.

The Problem with Expectations

The obvious problem with expectations, at least at first, is that we are often unprepared for the letdown. When we don’t achieve the way we expected, it can feel like a failure. For some, that can lead us to shutdown and get stuck.

When we set expectations early in life and achieve them, it’s often viewed as a good thing. Rightly so, you set a path for yourself and achieved your goal. Rich Karlgaard writes about the problematic relationship Western culture has with early bloomers in his book Late Bloomers. Western culture is so hyper-obsessed with the Mark Zuckerbergs, Elizabeth Holmes, and Malala Yousafzais, that it overlooks those who quietly grind away to achieve their success later in life (30s and beyond).

Because there’s an intense expectation for early success, often when we leave high school or college without making some “30 under 30” list, there’s a feeling of panic. This can bring our personal expectations down, or cause us to stall out for a few years.

This is one problem with societal expectations: we misplace expectations on people who may not be emotionally mature to handle the pressure (for reference: Elizabeth Holmes, Martin Shkreli). When young people are pushed to succeed early, they forget that a window does not close as soon as they turn twenty-five. That window for success stays open their entire lives.

If you are alive, you still have the chance to bloom and succeed.

The second problem referenced in Karlgaard’s book is that early bloomers do not know how to handle failure in the same way late bloomers do. When you are a late bloomer, you get used to “failure;” you get used viewing it not as a failure but as a learning experience. Late bloomers are better equipped with managing their expectations.

Learning to Manage Expectations

In life, there are two sets of expectations: “positive” and “negative” ones. This is a false binary, but I am going to use it for clarity sake. Positive expectations are the goals we set for ourselves that we want to achieve. Negative expectations are the times we don’t believe we can achieve it.

At the time we receive our diagnosis, we might drop our positive expectations: career, family, personal goals; and replace them with negative expectations: lack of mobility, exacerbations, and limitations.

For example: before my diagnosis, I intended to become a University professor. After my diagnosis, I dragged my feet because I assumed I wouldn’t be able to handle the rigorous testing due to memory issues. I replaced a positive expectation, “career goals,” with a negative one, “my memory prevents me from achieving.”

If you are like me, a late-bloomer, hopefully you know how to handle disappointment and also view perceived failures as learning experiences. Transfer that awareness to how you view your illness: manage your expectations away from the negative reasoning of “I can’t do this,” to positive “why not try it anyway?”

Often after a diagnosis, we work our way through grieving for our health. It’s a healthy and necessary process, but sometimes we decide to get stuck on the negative thinking. It’s easy to look at all we think we can’t do, rather than focus on what we can do.

But you might surprise yourself if you take a moment to release the expectations you place on yourself. Yes, you may be struggling to walk or get out of bed today because you physically cannot do so, but does that mean you should indulge in the negative expectations of what you can’t do?

No.

There was a time after my diagnosis where I didn’t think I could run or do anything active due to numbness and fatigue. I was in a negative expectation mindset. I actively decided to remove all expectations on myself and said, I can do something. It won’t look the same as a person without an autoimmune diagnosis, but it will be something.

The moment I removed all my expectations (negative and positive), I found I was able to achieve.

I actually found I went farther than before my diagnosis because I removed all expectations I placed upon myself and my abilities. Even when I was “healthy” I had numerous expectations that prevented me from achieving.

This is because when we manage our expectations by removing them, we remove the mental obstacles that prevent us from attempting in the first place. We go out and attempt to achieve without thinking about the limitations we might have. We may still stumble, but it isn’t a failure as much as it’s a learning experience.

If you were an early bloomer, this is your opportunity to bloom once again. Or, as it is in my case, my chance to bloom later in life.


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Featured photo credit: Canva


dealing-with-ms-fatigue

When MS Fatigue Strikes

I never realized it, but I was dealing with MS fatigue for a long time prior to my diagnosis. I always thought the fatigue had to do with my depression, which may have been MS related, but I had no reason to look into the fatigue. Once I resolved or managed my depression, the fatigue would go away. I wasn’t sure how I would manage my depression, but it was in the back of my mind “to do.”

The last time I felt energetic, truly energetic and what I imagine it feels like for everyone else, was when I was a teenager.

Every day can be a struggle for me to get things done. It’s something I’ve talked about a lot on the blog, especially the feelings of frustration I get from not being able to get everything done. I have learned to adapt around the fatigue, but the unpredictability surrounding it and what affects it is still a learning curve.

I think I will constantly be working through the frustration the fatigue causes.

What is MS Fatigue?

MS fatigue, or lassitude, is something that happens every day for the majority of people with MS. This fatigue can vary day-to-day and person to person. At this point in time, researchers do not know what causes fatigue, just that it is something that happens more with people with MS (up to 80%).

My completely uneducated, unqualified guess is that it probably has something to do with how the lesions affect our body or the fact that our immune system is constantly in overdrive and attacking itself. Like how we feel when dealing with a cold, the fatigue is our body’s response to the attack.

Fatigue can so negatively impact a person with MS that it may be used as a reason for why a person leaves the workforce early. I know that it made going to a physical job more difficult, one day I had to lie down on my office floor for a nap because I was so exhausted from teaching. I was able to work, but by the end of the day, I was completely worn out because I couldn’t get any naps or periods of rest during the day.

For me, I have my most amount of energy in the morning (with or without a good night’s sleep) and slowly lose energy as the day progresses. By mid-afternoon, I am desperate for a nap and will have a minor surge in energy afterward for an hour or two, but there is no guarantee of that second wind.

Fatigue as a Background Feeling

I have found that the fatigue surrounds me so much that it has become a background feeling for me. There is a level of itchy-comfort that surrounds me every day. I know this is an oxy-moron, but what it means is that I have that weird cozy feeling all day that you get when you are just tired enough. It’s that warm feeling you get where you are just drowsy.

But it’s itchy and uncomfortable because it’s really hard to snap out of it, which is frustrating. My body wants to stay in bed and sleep all day, but my mind is “we have to move and get work done!”

I have learned to push the fatigue to the background for most of the day, working through it, but I know that it makes me cranky at times. That’s where self-compassion comes in, but also where goal-setting helps as well. I think my running training has helped a lot. Besides giving me some extra energy that comes naturally from exercise, it sets a blueprint for goal acheivement throughout the day.

Running creates this blueprint: I need to run to the next telephone pole and then I can walk for a few seconds. When I am so worn out from running a long race, I sometimes have to create these small goals to keep pushing myself towards my personal race goals. In my daily life, it is very similar: I say “I need to complete this task and then I can rest for a few minutes.” When I feel my fatigue winning, I remember that if I can push through it with running so can I push through it in my daily tasks.

Bad Fatigue Days

Bad fatigue days are some of the worst days and moments for me.

I may have a bunch of things on my “to do” list and I will not get more than one thing done on that list. And that feeling of unproductivity can be extremely frustrating and discouraging for someone who likes to get a lot done in the day.

If I do too much the day/night before, I can be wiped out the next day making getting out of bed near impossible. When this happens, I find that I am cranky for much of the day. Unfortunately, because of the nature of the fatigue, no amount of sleep helps revive me. I could sleep over 8 hours the night before, get 4 to 6 hours of naptime and still be able to go to bed early for another full night’s sleep with no relief from the fatigue.

On these days, I feel that my depression hits harder because I am so tired and frustrated with my body.

I get frustrated when dealing with exacerbations, but I find that I am less frustrated with an exacerbation than I am with the fatigue. An exacerbation can be managed with medication, my fatigue rarely can. I’ve tried several different medications meant to give me a boost in energy, but I find they don’t make a dent or make me more drowsy.

Fatigue’s Impact on Emotions

While I might take medication, drink copious amounts of caffeine, run a mile or two in the morning, drink a bunch of water, or just rest in order to raise my energy levels, I find that I get no real relief from my MS fatigue.

The lack of relief or lasting energy boosts is so frustrating and wearing that I think fatigue has the most negative impact on my emotions regarding my MS.

I really wish that I can get more things done during the day. I wish I could have all the energy in the world to do a bunch of things with Jai. I wish I could take a couple extra hours every day to work on my blog and do my daily tasks.

All of these desires lead to my feeling of helplessness and personal frustration towards myself and my MS. Any negative feelings I have towards myself stem from my complete lack of control over being able to get things done in the amount of time I want. I might plan to spend the whole weekend getting caught up on a project and then find both days are spent in bed because I can’t summon enough energy.

With these negative feelings, I have learned to embrace self-compassion as a way to manage them. I recognize that until they come up with a perfect drug to deal with MS fatigue, this is something completely out of my control. I cannot change something out of my control, so stressing over it will achieve nothing, therefore I have to be softer with myself.

On Friday I will be discussing more indepth how I deal with my MS Fatigue in my newsletter post. If you want to read more about my personal solutions to this common MS problem, please sign up for the newsletter here.


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Featured photo credit: Michelle Melton


self-compassion-and-chronic-illness

Self-Compassion and Chronic Illness

I’ve spoken about self-compassion on the MS Mommy Blog before and what a positive impact it’s had for me as a personal coping tool. When I first read Dr. Kristen Neff’s book, Self- Compassion, I fell in love with the concept as a life philosophy. I recognized that self-compassion and chronic illness go hand-in-hand, and should be recommended by our healthcare professionals as part of our disease management regimen. It’s easy for us to get self-critical when trying to manage our illness that we don’t remember that part of our care should be loving ourselves no matter how “broken” we might feel.

What is Self-Compassion?

Self-compassion is exactly what it sounds like: taking compassion (i.e. understanding and empathy) and turning it inward. Practicing compassion for ourselves is the first step of successfully being compassionate towards others. If we can love and care for ourselves, we are able to extend that love to others in our life.

Self-compassion is about forgiving ourselves even when we don’t need to: sometimes we take on responsibilities when it’s not warranted. I know I’ve mentally beat myself up over perceived missteps and learned to “forgive” myself so I could move forward mentally and emotionally.

As humans, we suffer. It might as well be the third absolute truth of life: death, taxes, and suffering.

So when we engage in compassion, we are recognizing the suffering and do what we can to help mitigate it for others. Sometimes helping others who are suffering dampens our own suffering, but the caretaker tends to be the one in most need of care.

Treat Ourselves as We’d Treat Others

There’s the golden rule we’re taught as children: treat others as you would want them to treat us. I think we forget that if we don’t’ treat ourselves well, how can we expect others to treat us well?

I know that if I don’t think very highly of myself, I  prone to let others take advantage and bully me. I feel like I deserve it, even if it makes me angry and I lash out in response. Once I began to say to myself: “no, I don’t deserve this treatment,” I found that the negative relationships went away.

And I felt better about myself for it.

Meaningful life changes come when we acknowledge our own importance in the world, something that is hard to do if we’re conditioned to feel unimportant. When we treat ourselves well,  we’ll be able to treat others well.

Tell yourself that you are worthy of your love and see how that alters your perspective.

Self-Compassion and Chronic Illness

So what does self-compassion have to do with chronic illness?

As I’ve previously mentioned in the blog, it’s easy to beat ourselves up and feel massive amounts of disappointment over something we cannot control: our health. Refocusing our anger and frustration to loving and caring for ourselves when we cannot control the situation is a better use of our emotional energy.

If your chronic illness is like mine, undue emotional stress, especially when controllable, leads to attacks. Rather than engaging in the behaviors that put me at risk for an attack, I reject the desire to blame myself and choose to love myself is a means of managing my disease.

An Invaluable Tool for Life

If you don’t have a chronic illness impacting your day-to-day life, engaging in self-compassion is a wonderful way to healthfully handle all that life throws at you. I have found that it’s a tool I wish I used more prior to my diagnosis. My overall satisfaction level with my life is up, which is something I could not say seven years ago.

Looking forward this month, the blog will discuss more in-depth the importance of self-compassion, ways to remember to use it, and reviewing the book Dr. Kristen Neff’s book that started me on this journey.

If you haven’t already, please sign up for the weekly newsletter so you don’t miss Friday’s posts and free materials to help you along your wellness journey this year.


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Featured photo credit: Priscilla Du Preez on Unsplash


Setting Attainable Personal Goals

Setting Attainable Personal Goals

A few months back I was looking for an effective way to create a one-year and a five-year plan for myself as a means to set attainable personal goals.

I was tired of coming up with the idea of doing something with no actionable plan to achieve it. I would say to myself, “I want to achieve x,y, z,” but had no plan of action. Many meaningful life goals require more thought and attention to details than simply naming them.

It was at this point I did some research and found a system that helped me better organize my thoughts, create a plan of action and feel like I could attain my personal goals.

Setting SMART Goals

Want to feel smart? Try setting S.M.A.R.T. goals.

S.M.A.R.T. is a mnemonic device for “Specific, Measurable, Achievable, Relevant, and Timely.” Created back in the early-80’s by George Doran, Arthur Miller, and James Cunningham, S.M.A.R.T.  goal creation started off as a business tool that worked its way into personal usage over the years.

Each word acts as a writing prompt, a means to get you thinking about each aspect of the overall goal. When it comes time to figure out these five elements to your overall goal, you answer the question each word presents. The question might look something like this:

  • Specific: can you be clear & exact about your goal?
  • Measurable: how can you quantifiably assess your progress within your goal?
  • Achievable: how realistic is this goal and is it attainable?
  • Relevant: do you have other goals and how does this goal relate to them? How well does this goal relate to your current needs/desires?
  • Timely: what timeline do you see yourself achieving this goal?

For a really clear explanation for each word, Mind Tools has a fantastic page breaking each word down with clear examples to get you started.

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