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.
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.
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 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.
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.
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.
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