parenting-with-a-disability

Parenting with a Disability

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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 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 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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Setting a Positive Example

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I haven’t had a parenting post in a while, so it’s time for one. If you are like me, and a parent with a chronic illness, thoughts of “how can I be a better parent” come up in moments of self-reflection. A constant concern I have is, am I setting a positive example for Jai? Am I being a good mother, especially in the moments my illness seems to take over?

I feel like there’s a lot of expectations placed on mothers, especially on how we project ourselves in public and private. When we have moments where we are vulnerable, we get frustrated. Coupled with a chronic illness, especially invisible ones where society forgets we are ill, it’s easy to feel overwhelmed.

For myself, in the moments I feel overwhelmed, I feel like I struggle to set a positive example. With my MS, I feel obligated to set an example about the importance of handling things out of our control in a positive way.

When we have a Little Clone

It isn’t always the case, but have you noticed being closely aligned with a parent in personality? More like your mother or your father? Or a nice blend of both? If you are a parent, you may notice your child favors you or your partner more in personality.

This may be frustrating because two strong personalities in the same home is a recipe for conflict. But it can be a wonderful bonding experience if approached properly. The parent whom the child favors is able to identify personality quirks and be sensitive to particular needs. Rather than being an adversary, the parent can be a valuable alley within the home.

When a child is similar to us, it’s a wonderful opportunity to see our own behaviors in their purest form. Children can provide a deeper insight to ourselves.

I find that Jai teaches me how to behave better. Observing his interactions on the playground, he does not get upset when another child steals his toy. Rather than getting upset, he’ll move on to another toy. It’s an opportunity for me to learn from his wisdom: focus not on the loss of the toy, but the opportunity to do something else.

I recognize his behavior is age/developmentally based. In a few months, he may not behave so passively in a similar situation.

In those moments of adaptability, I encourage his behavior. Likewise, I want to make sure he doesn’t pick up my bad habits. Rather than swooping in and letting Jai know that something negative happened, I try to be as non-reactive to keep the situation calm and under control. My instinct is a bad habit developed over the years: take the toy back while reprimanding the offending child for not knowing how to share. This teaches Jai to be aggressive in a negative way and I don’t want to encourage that.

If Jai is upset over losing something, it is better I show him how to ask for a toy back in a nice manner, rather than fight bullying with bullying.

Setting a Positive Example to Children

Children, even in their worst moments, provide us with valuable insight to our own behaviors. They observe our every moment, behavior, and style of speech. A few weeks ago, when I braked the car suddenly, I heard from the backseat, “what are you doing?” directed at the driver causing me to brake.

I knew in that moment I needed to be more aware of the language I used while driving around the city.

Consider this: next time your child behaves in a manner you find problematic, step back and see where that behavior was modeled for them. Was it from you? A co-parent? A secondary caregiver? School? If you find that it is a reflection or response to your own behaviors, consider finding a way to change it so you model the behavior you want your child to have.

This might be particularly difficult to achieve with a chronic illness, but it is still possible. Use your illness as a teaching moment: sometimes we cannot control our own behaviors because of an exacerbation, but we are doing the best we can with what we have.

When you mess up, rather than ignoring it, sit down with a child and explain what happened. Do not excuse it. Provide a reason to your thinking and behavior, or admit you don’t know why. Walk a child through how you plan to approach the situation in the future and acknowledge that you may not remember/achieve it the next time. Admit to your imperfection, and reassure the child that it’s okay to be human but not okay to hurt others. Finally, make sure you apologize to your child if necessary.

Treat your child, no matter their age, like the human they are with all the respect that goes with it. You’ll find that the example you set, no matter when you start, will eventually payoff with some patience and compassion on your part.

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Featured photo credit: Michelle Melton

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How to Self-Reflect as a Parent

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This year, as we move towards self-improvement, not every goal is managing our chronic illness. I know that some of my secondary, unwritten goals are to be a better parent to Jai. Self-reflection is still essential, but how do you self-reflect as a parent? What are some of the crucial steps or changes you should make? Are there any changes that need to be made?

Parenting is one of those areas where there is no right answer.

Each person has their own style and belief, and because there’s this instinct built into the process of parenting, it’s hard to move beyond the hardwiring. But as with everything in our life, we should take a moment to reflect on how we parent.

Who am I as a Parent?

This is the number one question to start asking yourself: who am I as a parent? Am I gentle, unstructured, helicopter, snowplow, fighter jet? How does this style of parenting impact my child? Do I walk away from each interaction feeling positive about how I handled the situation or do I feel like I lost control?

Take a moment and be honest. Self-reflection isn’t easy and the answers to those questions may be difficult. But remember, it’s never too late to make changes to your parenting style.

If you have a partner, ask them how they see you as a parent. You’ll want them to be honest, so while you might get defensive by what they say, try to be open. The truth can be hard to hear, but it is the only way to reflect on the changes that you want to make.

Take the time to write down all that you come up with about your parenting style and abilities. Separate the positive aspects to your parenting with the negative aspects.

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Kids as Self-Improvement Motivation

Kids as Self-Improvement Motivation

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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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Self-Improvement and being a parent

Self-Improvement and Being a Parent

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Type “parenting & self-improvement” in a search engine of choice and you’ll come up with thousands of blogs, articles, and studies on ways to improve your parenting. But what about a separation of the two concepts? Self-Improvement AND being a parent? That’s something I want to examine in today’s post.

For some, it’s because of our kids that we decide to take the time to become a better person. I know that’s what I did. I want to examine the importance of taking the time to focus on ourselves with the end-goal of becoming better parents. Any self-improvement we do for ourselves will help improve our abilities to be a parent for our children.

As I discussed last Monday about happiness, if you want to improve your parenting, consider making the end-goal not about your parenting but about yourself.

Make the Journey About Yourself

Type in “ways to improve parenting” and many of the sites to pop up are ways to be a more active listener, be patient, and take time to get to know your kids. All of these are fantastic suggestions, but hard to sustain if the work behind a lack of listening, patience, or communication isn’t addressed internally.

In this year of wellness, if you are a parent, make the journey about yourself first and not about improving your parenting.

If one of your goals (discussed in last week’s newsletter) this year is to improve parenting, this isn’t me saying you need to reconsider your goals. Rather, I am suggesting that you consider the reasons and alter your perspective before going any further.

If you focus too much on something that will deepen your frustration, if you find that you aren’t meeting your benchmarks, you will get frustrated. Frustration leads to discouragement and possibly giving up before achieving your goals.

Therefore, make this journey first about yourself and about your children second. If you’ve done air travel or seen it in a movie/TV – remember what the flight attendants always say: take care of your oxygen mask first before helping anyone else, specifically your children.

If you aren’t able to help yourself, it’s going to be very hard to help your kids. 

So if a goal is to be a more attentive parent, ask yourself what might be at the root of that? Make the answer to that question your goal for the year. Quick to snap at a child? Focus on your anger or negatively associated feelings with yourself instead of saying “raise my voice less towards my children.”

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