This post was originally published in March 2018. I’ve updated it to include a follow up since the original publication.
While MS can make parenting difficult, and I have to be okay with my limitations, there are ways to be the parent I want to be. Remembering that I am enough for my son, and he won’t necessarily recognize my limitations helps. I learn to plan workarounds in our daily lives to minimize MS’s impact. As he transitions to a different developmental stage, my adaptations will evolve with him. My ability to be more interactive will increase as he grows older.
This isn’t advice, 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.
I’ve 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 a toddler, and mental fog means that I can’t recall information quickly. Learning opportunities feel like they slip away because I can’t remember information quickly or accurately.
Below are some ways I actively adapted my parenting due to the MS. I am sure there are other things I do without thinking that are adaptations, but I can’t identify them right now.
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.
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 safely. When I need to intervene, I do. Still, for the most part, I will enable him to entertain himself when I am feeling unusually fatigued.
This is good for him in several different ways. It grants Jai a safe form of independence that will help boost his confidence. Jai can critically think through a problem, like detangling two toys. It also allows him to discover his abilities or limitations. When he is around other children, I found that taking a hands-off approach improves his socialization.
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 warn him if I find my energy is flagging. This is to avoid a sudden stop in playing from me. I will then redirect the play into something less high-intensity, like reading a book or playing with a stuffed animal.
I have found that “alerts” have helped minimize any sort of upset feelings: “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 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 Jai 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, 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, 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.
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 helps keep me focused and on track with things that might previously be an issue.
As Jai gets older and I need to answer questions, I will plan 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. We will 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.
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. Still, 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 me, we will acknowledge it. Still, 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.
Revisiting two naps a day was a little sad. I am lucky if Jai will nap once. I do find that I struggle to rest even during Jai’s quiet time, only because he’s so rambunctious, and I am worried he’ll get hurt. Jai is still a champ at independent play, which is helpful for my low-energy moments. I can sit and supervise him while he plays or not chase him around the playground as much.
As he’s gotten older, I am struggling to find the balance between doing my work, interacting with Jai, and getting enough rest. I find that most days when I have the energy, I try to do my housework and let Jai play by himself. I rely on Ash to do the more active play, while I answer questions, and interact with Jai on a more verbal level. If I don’t take the time to do the housework, it won’t get done. But it leaves me little time to do the active play Jai enjoys.
That means my feelings of inadequacy exacerbated as he’s grown older. I thought as his attention span increased, I could do more sit-down activities with him, and maybe that’s going to happen in a few more years. But I still can’t do the active play he wants for as long as he wants, and it makes me sad when I have to say, “no” to him.
It’s one of the reasons why we put him in a weekly program. It gives me a break from parenting for a few hours, and him the interactive learning experience he needs. He gets to socialize with kids his age, has teachers who guide him through playful learning, and his energy expended from all the activity. I’ve already seen his confidence boost after a few months, and he’s more comfortable with social play while on the playground.
In the summer months, when he’s not in his program, I would take him to the park at least once a week to let him run around. I stand off to the side and only jump in when he needs me to intervene. As we get into colder months, I try to find crafting activities I can sit and do with him while inside.
I’ve increased my reading, so there are days where I will sit with him, and we’ll read our books “together.” I do enjoy those moments, mainly because it’s quiet play, but I think it sets an excellent example to see me read.
And reading has helped my memory fog, which is to be expected, so I am struggling less with my recall. It’s still not perfect, but it’s a lot better than the beginning of the year.
Overall, I don’t think Jai’s noticed the difference in my parenting style, beyond Mommy is less active than Daddy. I’ve found that next to some of the parents in his program, I am more interactive. It’s not about comparing myself to them, but it’s about seeing from the outside that I am more involved than I give myself credit.
As Jai begins to transition to a new developmental stage, my parenting style will adapt again. And hopefully, I’ll give myself credit for making an attempt to find ways to keep up.
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Featured Photo Credit: Michelle Melton