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.Read More