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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Kids as Self-Improvement Motivation

Kids as Self-Improvement Motivation

Monday, I talked about not using children as your main goal for self-improvement. Instead of working towards being a better parent, figure out why you struggle with the aspects you want to improve and work on that instead. Improved parenting becomes a secondary benefit when you feel better about yourself. So when I say, kids as self-improvement motivation, it feels like I am taking a step backward from Monday’s post.

But I’m not.

Because children are a part of our daily lives, they can also be a part of our motivation. Seeing your children born and grow may motivate you to become healthier to live longer. Or they reflect behaviors that you do but know needs to change. Their appearance in your life may be enough for you to say “I need to make some changes!”

With that in mind,  kids can work as self-improvement motivation.

A Clarification: Parental Responsibility

Before I go any further I need to make some clarifications and disclaimers to contextualize the rest of this post.

Your children are not responsible for motivating you. They do not create or affect your happiness or ability to succeed. Only you are responsible for yourself and your behaviors. Things in your past may influence your current behaviors, but you are responsible for your own actions. Therefore, your children are not responsible for your ability to make and achieve your goals.

What I do suggest is to use their natural behaviors and inclinations to achieve your goals. If you have a toddler it’s near impossible to keep them still, so if you want to exercise, try to take advantage of their energy.

Jai loves to exercise and run around the house. One of my short-term goals this year is to do more yoga. Why not combine his need to burn energy and my need to practice? Using his natural need to expend energy as a means to motivate me to exercise is using him as a motivator. I am placing no expectations on him, no responsibility, he doesn’t even know that he is helping me out.

Likewise, if you are looking to de-stress and improve how you react to your children under stressful circumstances, do not expect them to behave any differently. Look at how they react to you when you react to them. Sometimes seeing a look, that look, that they give can be motivating enough to work harder to avoid getting it next time.

You are placing no expectations on the children, no responsibility on them to help you through your journey. The only responsibility your children have in this journey is being their own, individual person, enjoying their childhood, and reaping the benefits of the work you do for yourself.

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Toddler Life Lessons

This post was originally published August 2018.


Toddlers are too young to understand deep, philosophical lessons. They are too young to understand moral quandaries. They are too young to really grasp right from wrong.

As parents, we know that just because they can’t understand it, doesn’t mean it shouldn’t be taught. I feel like this is a “no, duh” moment many parents are saying to themselves right now.

Yet an issue I run into as I parent Jai with Ash is knowing what lessons to teach and how best to teach them. Questions I ask myself on a daily basis: is this something worth correcting Jai on? How do I correct him, with a warning or straight to time out? Should I follow the mainstream recommendation or go with my instinct?

A mentor once told me years ago, well before I met Ash, that you are never truly prepared to have a child. So if you want to have one, you have to just jump in and learn as you go. It won’t be easy, but the payoff will be worth it in the end when you have a functioning, well-adjusted adult that wants to have a relationship with you after they’ve moved out of the house.

But in order to achieve this, I have to begin training Jai to be polite, thoughtful, a good listener, able to share, and comfortable with adults as a toddler. The list is a bit longer than that, but those are the main concerns I have on a daily basis with a toddler.

As I am training Jai, I have to be mindful of several things: I’m an adult, what battles to pick and being humble throughout the whole experience.

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Fall Festival Fun

Depending on where you live, festivals are happening throughout the year. Living in the South, we tend to only have major festivals in the spring and fall when the weather is optimal. Because fall in the South is vastly different from what I grew up with, I’ve come to rely on the fall festivals to be a vehicle to “feeling” the fall season.

A lot of that stems from childhood activities during the fall and the mother of all fall festivals.

My Love for Fall Festivals

Growing up in New England, every year around this time is a massive fall festival that highlights all the New England states. Centrally located, going to this festival was a highlight of my childhood. For many children, myself included, it meant skipping a day of school in favor of going because the weekends were always too crowded.

This festival takes place on massive fairgrounds with several exhibition halls filled to the brim with vendors, displays, competitions, food, and informational exhibits. A crowd favorite? A butter sculpture that changes from year-to-year. They also have different buildings that highlighted everything each New England State produces or grows.

It was at this festival I learned about a new thing called “the information superhighway,” or the “World Wide Web.” They had an exhibit explaining what this new-fangled, recently released to the public in a more open capacity (it was limited until that point). I was more interested in the coloring book and stickers I got after going through the exhibit than what it had to tell me about “the internet.” Oh, if only I knew.

They also had a sizable midway and barns filled with various livestock for show and sales. In high school, I attended most years either as a volunteer for the agricultural display where we made free bows for fairgoers or as part of a competition. Never won anything significant, but it was always a fun excuse to skip school legitimately.

Unfortunately, there is nothing comparable in the South, at least nothing I’ve found. I do have plans to bring Jai up when he’s older so he can experience the same excitement I had for this festival as a kid.

Fun & Cheap (even Free!)

Another reason why I love fall festivals is their price. A favorite one we attend every year is only $10 for the public to attend, but free for members. Once inside, goers are able to view various points-of-interest, participate in fun activities for children, watch dancers showing off, listen to music and walk through both food and trinket vendors.

Other festivals near where we live are free to attend, which can also include free demonstrations and live music that always appeal to fascinated toddlers. There is never a requirement to spend money at these festivals, which both Ash and I love, though we try to support local artisans when the price is reasonable.

Suggestions for Attending (especially in hotter climates)

Some tricks that I’ve gathered from attending festivals all these years

  • Bring a sizable and easy to carry a water bottle. Water can get expensive but is necessary to have when dealing with hot weather and walking around.
  • Limit alcohol consumption (even if it’s a wine/beer festival). If it’s a particularly hot day, drinking too much will quickly dehydrate you. If you must drink, consider matching each cup/glass with an equivalent amount of water.
  • Hats, sunscreen – the works for sun protection. Some locations may not have shade and where they do you may end up fighting others for space.
  • Bring layers, comfortable shoes, and check the weather. While in the South, wearing shorts and tee-shirts might be the standard uniform for most days, there are the occasional cooler days where having a sweatshirt for part of it might be ideal. Comfortable shoes are also a must as most of your activity will be walking up to a mile.
  • If allowed, bring in a picnic lunch to help save money and stick to a healthy eating plan. Festivals always have tempting terrible foods that are deep-fried, but if you are trying to eat healthily, it can be discouraging to see and smell the foods you want to try but know you shouldn’t. Bring the main parts of your lunch if you can and then treat yourself after you’ve eaten to a festival dish. That way you are already full and will eat less and only limiting yourself to one unhealthy item versus a meal’s worth.
  • For those with children:
    • No matter the age, an extra set of clothes (especially bathing suit & towel) and shoes. Some places have previously unknown water/pool offerings and nothing is more discouraging to a kid than saying “no” because you are unprepared.
    • Bring cash because some festivals have play areas to burn off energy that might only accept cash.
    • If bringing a lot of stuff and you have one, consider bringing a heftier stroller versus the simple umbrella stroller. Strollers are great for carrying food, extra clothing, etc. If your little one is too old for a stroller, consider a collapsible wagon. Some are highly rated and can carry up to 150 lbs (which will be useful when little ones outgrow that).
  • For those with MS or illnesses affected by the heat:
    • Bring a cooling towel of some sort that you can re-wet frequently to help keep you cool.
    • A portable chair that can function as a cane while walking around. Getting down on the ground can be difficult and more difficult to get up.
    • Check, if you can, for motorized access if you use a scooter. Most festivals have to be ADA compliant, but one of the ones near where we live has very narrow walking paths between the vendor tents which can make it frustrating for those in a scooter.

What are some of your favorite fall festivals that you attend? Do you have any fun childhood memories of fairs? Share your experiences in the comments below.


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Featured photo credit: Michelle Melton


A Culinary Education

Part of the process of raising a foodie is teaching a child how to cook and bake. If you want to appreciate what’s in front of you, you have to know how it’s made on a fundamental level.

Jai knowing how to cook and bake by the time he turns 18 is important to me. I want to know that he is able to take care of himself in the most basic ways without having to rely on others to do it for him. If despite knowing how to make meals for himself, he chooses fast food every night for months on end, I am okay with that. When he’s ready to impress a potential partner or roommate with his domestic skills, he’ll be able to do so.

To start this education, it means that I need to introduce him to the kitchen as soon as he’s ready. Right now I am letting it take a more natural route, letting him drift in and out of the kitchen, answering questions he might have and include him when I can. I don’t force the issue once he’s lost interest. I want the experience to be enjoyable, not frustrating for either of us.

Innate Helpers (and how to take Advantage)

Toddlers are innate helpers. They want to help parents around the house even when it makes more of a mess in the process. Unfortunately, there is a tendency for parents to discourage this “helping” desire because of the mess, which discourages the child’s desire to help as they grow older.

Rather than discourage this tendency, it’s recommended to encourage it as much as possible, which is what I do with Jai. I try not to take the task away from him when he makes more of a mess, but gently guide him towards the appropriate way to clean or pick up his stuff. At this point his responsibility level is minimal, but his enthusiasm is astronomical.

Right now, it makes more work for me, but I know that as he grows older he will be able to be more helpful. I am just waiting for his attention span, dexterity, and even a growth spurt or two to come in before he is able to help in a more meaningful way. Until that happens, though, I have to continue to encourage his help even when it slows me way down.

With that in mind, I work in more time to do certain tasks that I know he’ll be interested within the kitchen. Breakfast isn’t a quick ordeal because he has to help me crack the eggs, scramble them in a bowl, put the cooking spray cap on, and supervise my cooking of the eggs. What should take me 5 minutes from start to clean-up takes about 10 because we have to wash his hands after cracking the eggs in the bowl and little distractions that stop all progress for a few seconds.

There are days where he’ll hear the blender running and come rushing in to see what is happening. In those instances, I shut the blender off, show him what’s inside (though mostly pulverized), and let him push the button to get it started again.

There are other days where something I am working on bothers him for no explanation. I was trying to assemble my espresso stovetop maker the other day and he came in to check on what I was doing. He saw the utensil in my hands and got very upset. I tried to figure out what was bothering him about the maker, but he was just shaking his head, going “no, no, no” in an extremely concerned voice. I put it down and waited until he left the kitchen, 5 minutes later, before I tried to assemble and make my coffee again.

What it boils down to is respecting his wishes and independence in the kitchen, even at 23-months. I am respecting his desire to help, learn, and make (some) decisions with the end goal of him feeling comfortable helping me and learning more when he is ready.

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