Parenting

Teaching Children About MS

Ash and I haven’t had many conversations about how we would explain my MS to Jai, mainly because it hasn’t come up. The time is coming where one of us will need to sit down and explain why Mommy isn’t like other Mommy’s despite all that I try to do.

Because I haven’t had a conversation with Jai, I did some research and compiled in one place how to effectively speak about a parent with a disability/chronic medical condition. Unfortunately, the internet is surprisingly sparse about how to have a conversation with a child about a parental disability.

If you’ve already had the conversation with your child and want to share how it went, please comment with your story and suggestions below.

Continue reading “Teaching Children About MS”

Parenting

Adaptive Parenting

While MS can make parenting a little bit harder and I have to be okay with my limitations, there are ways of working around it and still be able to be the parent I want Jai to have in me.

Remembering that I am enough for my son and he won’t necessarily recognize my limitations helps as I plan workarounds in our daily lives to minimize MS’s impact. As he transitions to a different developmental stage, my adaptations will evolve and I may be able to do more for him as he gains his own independence.

This isn’t meant to be taken as advice or “what should be done,” but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can and that’s the most important thing.

Finding Alternatives

On Monday I related some of my personal frustrations regarding my MS: fatigue and mental fog. Fatigue prevents me from being able to have the energy I need to chase Jai around like I want to and mental fog/memory loss means that I can’t recall information as quickly as I would like to answer questions or teach concepts.

Below are some ways I actively adapted my parenting due to the MS. I am certain there are other things I do without thinking that are adaptations, but I don’t know what thos would be.

Fatigue

This is a rather simple solution for me: take rest breaks when I can. But with a toddler that’s easier said than done. Additionally, when I take rest breaks, I feel guilty because I am not spending active time with him. Below are some ways I’ve adapted my parenting despite the fatigue.

Playtime

How I’ve worked around it: encourage more independent play for Jai. While he’s going to be 18-months soon, he does a lot of independent play for his age. This means I will sit in the room with him while he plays with his toys or when we go to the park, I will sit and allow him to explore in a safe manner. When I need to intervene, I do, but for the most part, I allow him to entertain himself when I am feeling particularly fatigued.

This is good for him in several different ways: it grants him a safe form of independence that will help boost his confidence; allows him to critically think through a problem, like detangling two toys; and discovering his abilities or limitations. When we are out of the house and around other children, I have found that taking a hands-off approach has helped improve his socialization with others in ways that my teaching cannot.

I gauge his emotional mood and if I feel he needs more one-on-one interaction with me, I will get down with him and play for as long as I am able. I make sure to warn him if I find my energy is flagging so it is a sudden stop in playing from me or I redirect the play into something less high-intensity, like reading a book or playing with a stuffed animal.

I have found that “warnings” have helped minimize any sort of upset feelings. Warnings have a negative connotation but they are me saying: “Mommy has 5 more minutes that she can play like this with you,” or “you can go down the slide 3 more times before Mommy needs a break.”

There is a liberal use of timers in our household. I will use the timer as an objective third-party that can arbitrate the length of my play. I do this to be fair to him and to begin teaching the concept of time. When the timer goes off, Mommy needs to take a little breather, therefore take that time to play independently again.

Naps or Rest Breaks

Jai would take two naps a day, averaging two hours at a time; and I used these periods to get things done or take a nap myself. He’s hit a developmental stage where, in his opinion, naps are mere suggestions and no longer necessary. It’s a toss-up if he’s going to take his morning or his afternoon nap so the only way we know is if I put him in his crib.

While he may not need those periods to sleep, I need them to rest so I can keep going throughout the rest of the day.

That’s why I continue to keep him on a nap schedule, but they are rest breaks for the both of us. For about an hour (or longer depending on my need), he will be in his crib with quiet music playing, pleasant lighting, some of his favorite toys and books, and allowed to play until I can collect him.

By putting him in a calm and low-sensory stimulation environment, I am giving him a chance to calm down and process all the activity during the day up to that point.

When he gets older and I am more confident in allowing him to be out of his crib unsupervised for a duration of time, it will transition to quiet time which is similar to his independent play. He will already be used to that quiet time, it will only be a location and activity change.

Mental Fog

This is the tricker adaptation for me. Figuring out what I know and what I don’t know and being okay with both answers.

Currently, I use my phone and my smart speaker to help me with reminders and timers. While this isn’t much help as far as advice is concerned, utilizing the tools there help keep me focused and on track with things that might previously be an issue.

As Jai gets older and I need to answer questions, my plan will be to use my phone as a teaching tool.

If I cannot give him an answer off the top of my head, I will turn it into a teaching moment: “Mommy does not know the full answer to that question, let’s work together to figure out how to research that.” I will then walk him step-by-step through the process of figuring out the right question to ask a search engine; how to analyze sources for trustworthiness; and discuss how he feels about the answers to the question, or where to continue our research.

We live in an age where having personal computers at our fingertips is normal, so introducing him to their research abilities early on will be a good thing, provided I limit the screen time appropriate for his age.

Acknowledgment?

I put a question mark at the end of this header because I don’t know the answer to the question: do you acknowledge that you’ve made parenting adaptations to your child?

I will be discussing teaching your children about MS next week, but I wonder if not calling attention to the changes I’ve made helps normalize my parenting. As Jai gets older and able to recognize the difference in parenting styles from Ash and myself, we will acknowledge it but until then I want to maintain as much of a normal childhood as possible for him.

For those with MS or other conditions that limit your parenting abilities, what have you done to make adaptations to your parenting? Have your children noticed and what do they think about it? Leave your suggestions and comments below.

 


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

The Check-In

Checking In: MS Symptoms

What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better, but on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a cold like this they may feel wiped out but are able to go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep this afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key cause of flare-ups so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick, but I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but since having Jai it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted, but doing what is best for my overall health is more important. My brain fog and memory issues haven’t gone away or lessened it, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days means that I have more energy throughout the day and days I do yoga there might be a greater dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no appreciable changes to my MS symptoms.

Continue reading “Checking In: MS Symptoms”

The Check-In

A Different Type of Love

A few months before I met Ash, I had an acquaintance confide in me that they didn’t love their partner as much as they loved their newborn.

The love, they said, for their partner was replaced with a deeper love for the baby.

They felt guilty by this shift in the relationship, but knew that this was necessary to being a good parent.

I wasn’t sure how to respond because I wasn’t a parent and I wasn’t in a relationship, so I did what any awkward single person would do: I nodded and affirmed that they had nothing to feel guilty about. It made perfect sense to me: love for a partner could easily be replaced with love for a child. Biologically, we are geared towards wanting to care for our offspring more in order to ensure its survival into adulthood.

They were talking about simple biology and I had no reason to disagree. I asked if they told their partner about this shift in relationship dynamics. They hadn’t at the time, but that was a very difficult conversation, so I didn’t blame them.

Now that I am nearly a year-and-a-half into parenthood, I remembered our conversation: the aquaintance wasn’t wrong about the shifting love. The love I have for Jai is deeper than the love I have for Ash, but it is a different type of love.

I still love Ash deeply, more so every day because of all that he does for his family, but the love I have for Ash is completely different from the love I have for Jai.

Different Types of Love

Psychologically speaking, there are 7 different types of love. For Ash, my love is more nuanced and a combination of erosludusand pragma. Whereas my love for Jai is storge and therefore completely platonic in nature.

So it isn’t that I love Ash or Jai more/equally I just cannot compare or measure the love for either because the love is so different.

The fact that my acquaintance was concerned about this conundrum is not unusual: there are plenty of forum posts and articles out there where mothers admit to loving their children more than their partners.

Unfortunately, what does not seem to be addressed is that the love between partners and the love between parent/child has to be different. I feel like this is obvious, but there shouldn’t be the same sort of sexual feelings for the child that would happen with a partner.

Continue reading “A Different Type of Love”

Parenting

You Are Enough

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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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 judgement.


In this final post of my “parenting observation series” I want to leave this as the major takeaway: we, as parents, are enough for our children. If we provide food, shelter, clothing, comfort, and education, no matter how imperfect it may be, we are enough for our children.

There is a lot of outside pressure on parents to be perfect and have it all: have the perfect house, job, relationships, food, clothing, education – the list goes on and on.  No parent can ever win the external societal judgement game. The standards for good parenting as dictated by outsiders is so high that it can drive us bonkers.

For those of us with the added obstacle of a disability, seeing what parenting without a disability looks like can be even more discouraging. But our children rarely see the disability in the same way we do.

We must practice self-compassion and ignore everything the outside world has to tell us about our parenting abilities. The only people who need to be in our minds is our children and how they view us.

And surprise: our children will love us no matter what and overlook any perceived imperfections we think we might have. They are, at this point, incapable of seeing our imperfections.

Remember how you viewed your parents in early childhood: one parent was stronger than Superman and the other was the only perfect source of comfort. Sometimes both aspects manifested in one person.

Our children view us no differently. They don’t see the same flaws or recognize what we cannot do. What they see is what we are capable of doing and how that relates to them.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so while it may not speak to your experience directly, it may apply to someone else you know.

 

Being the Perfect Parent is Overrated

One of the biggest issues I have as a parent is worrying that I won’t be perfect enough for my son. I push myself to the point of overload trying to be perfect on a daily basis, so it would follow that I would want to be the perfect parent to Jai.

This is not possible.

In fact, it is strongly discouraged to be a perfect parent for a child. Making sure that everything is done for them, they get all that they desire, the house is immaculate, and they get perfect grades every single time (so you help them out) – all lead to a dysfunctional relationship and stunt a child’s abilities to manage the real world in a healthy way.

If children do not learn about the world, how to manage adversity, and how to critically think through various problems if the perfect parent is doing everything for them, they will struggle as adults on their own. Learning about disappointment and how to manage it is a valuable lifeskill that gets lost if a parent avoids exposing a child to conflict as part of their perfect parenting routine.

Attempting to be the perfect parent can also create bouts of depression in the parent striving too high. This is not surprising because the attempt to be perfect outside of parenting raises a person’s chances of being depressed (I currently suffer from perfectionist paralysis in my own life).

By attempting to be perfect for Jai, I am setting myself up to be less able to help him if I am too depressed by my need for perfection. It’s a vicious cycle.

We want to fail as parents from time-to-time. It humanizes us to our children and helps strengthen any relationship that develops once they are adults. Providing a healthy example of failing in an adult and focusing on what they can learn from us and from their own failings will help promote long-term success in their own lives.

It requires a level of self-reflection that may be hard to swallow, but in the end it helps us grow as adults too.

Saying “I am Enough”

All of this isn’t to say that we should go out and purposely fail, but to acknowledge in a gentle way that it will happen and that’s okay.

Focus not on any failings you might have such as “I could have done this differently today,” or “I could have handled that situation better,” but on what they teach you and all the positives you did throughout the day. Our brains are wired to focus only on the negative, so it is important to rewire them to allow the positive in more often.

If something happens that makes you feel like a failure, try these steps to work through it:

  1. Apologize to your child if necessary even if they are too young to understand. It’s a good habit to get into and makes it completely normal for them when they are aware of it.
    • “I am sorry I yelled at you when you took off your diaper and got poop all over the floor. I was upset over the smell and the mess I would need to clean up. I understand that you are not aware of how much I dislike poop, so I am not upset with you, just upset over the situation.”
  2. Figure out what you could have done differently and create a plan of action should the incident happen again. Spoiler: it probably will.
  3. Take a few minutes to breath and comfort yourself. If you are tense or stressed out, make a cup of tea and allow yourself a few sips before continuing about your day.
  4. Forgive yourself for that failure. Remind yourself that you are not perfect and that is okay.
  5. Find a couple of things that went right during your time with your child. Focus on them any time you start to think about something negative.
    • “We sat and read three books, one of them being my favorite. I could tell my little one really enjoyed my favorite as well.” or “We ran around the chair for 5 minutes laughing at each other over how silly we were being”
  6. Repeat to yourself: “I am a good parent/caretaker, I do the best I can, I am enough for my child.”

All of this will take some time because we have to undo years of bad habits, but starting off slow will help build confidence and self-compassion  in our abilities as parents. These examples will benefit our children in the long run. It’s really about focusing on what we are able to do – not what we can’t do.

And remember: you will always be enough.


Liked this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.