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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Passing Compassion Along

This is the second 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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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.

This post was originally published February 2018.


Incorporating compassion towards yourself and your little one will naturally lead to raising a compassionate child, but there are other ways to work compassion into the daily routine. There are a lot of great suggestions out there from various parenting websites. I’ve pulled a list together of my favorite suggestions that I want to incorporate with Jai as he grows up and as reminders of what I can do on a daily basis for myself.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so while it may not speak to your experience directly, it may apply to someone else you know.

Compassion is Nurture not Nature

For some children, compassion appears to be inherent, but for most of us, it is something that needs to be taught either by adult example or via life lessons. To best ensure a child becomes a compassionate adult, it is important to teach compassion as part of the growing process. Age of the child (or adult) does not matter, it is something that can be trained at any point in life.

Compassion is not fundamental to being human, but the greater compassion (and self-compassion) a person has, the greater their personal success both personally and professionally.  More than self-esteem, teaching compassion will increase a child’s ability to successfully navigate the world. Increased self-esteem is secondary to compassion in most cases, though it follows closely behind.

Therefore, teaching compassion will be helpful in making the world a better place on a macro-level, but on the individual level for your loved one. The world becomes less harsh, not because of rose-colored glasses, but because your little one does not take adversity personally and takes it in stride. When bad things happen, they are viewed as lessons for growth and not personal insults to their being.

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I Wish I Knew: Toddlers

This is the final part in my series  “I Wish I Knew.” Read about what I wish I knew relating to pregnancy, birth, and babies in parts onetwo, and threeThis post contains affiliate links. Please read my disclosure policy for more information.

Culturally speaking, toddlerhood is equal to teenage years when it comes to least favorite times to be a parent. Toddlers throw tantrums without regard to location or convenience, refuse to move, refuse to eat, and are all around terrors. Add a hundred more pounds and you’ve got a teenager.

The narrative is this: when someone asks how old your little one is and you answer somewhere between 1.5 and 3 years old, you get that look of “may God have mercy on your soul,” and the question of “so how bad are they? they must be going through their terrible twos?”

I had a neighbor make a comment about Jai’s age yesterday when he was mad I wouldn’t let him put all his sidewalk chalk in water. He whined a little, but soon got distracted by the neighborhood cat who came to visit.

What I Wish I Knew

I am at the very beginning of the “terrible twos” stage so I still have a lot of naiveté when it comes to how Jai is handling the whole situation. But something I wish someone had told me?

It’s really not that bad. It’s not easy, definitely not saying that it is easy, but it isn’t as bad as I’ve been lead to believe.

My mother told me that parenting is only as hard as you make it out to be, so if you don’t take the necessary steps to help foster certain behaviors you want and help them manage the behaviors you don’t, then there’s a chance you will end up with an unmanageable child. There are other factors at play in this scenario: means, temperament, and patience.

Lots and lots of patience.

There were things I wish my parents did or did not do when I was growing up, so I am making adjustments to my parenting to reflect what I think might have made a positive difference in my life and therefore in Jai’s life. I am hoping to remain flexible enough that when I see something isn’t working I can adjust it.

Because I am currently involved with this developmental stage, I wanted to offer my thoughts on the questions I asked other mothers as well.

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I Wish I Knew: Newborns & Babies

This is the third part of my parenting series “I Wish I Knew.” Read about what I wish I knew relating to pregnancy and birth in parts one and two.

We’ve all heard it before: I wish children came with manuals.

There are plenty of books out there with information on how to raise a newborn, websites with troubleshooting tips, and professionals on the daily morning news cycles citing the latest studies on raising children. Each helps in their own way, but sometimes the noise can be a bit much for new parents, particularly sleep-deprived parents.

For myself, I appreciate looking to friends and family for their experience and advice. I kept my ears open when I was pregnant and filed the information away when I spent time with other mothers about what I would do once I became a mother.

What I Wish I Knew

I am not an expert at parenting, and I will never consider myself one, but I actually felt comfortable with how I would parent Jai in the first year. Beyond the newborn/baby stage? It would be one baby step at a time.

My main goal was to keep Jai fed, clothed, diapered, and entertained throughout the first year. I wanted to approach it with a relatively casual attitude, something I picked up from several other mothers, and just go with the flow.

There were a couple of approaches that I wanted to start almost immediately but scaled to Jai’s ability or development level:

  • Frequent bathtime
  • A bedtime routine
  • Taking time to explain something or giving him a quiet moment when he needed a break. That way it would be a habit for me when I needed to discipline him as a toddler

My thought process was that if he was used to each of these concepts when it came time to actually enforce them he would also go with the flow and minimize everyone’s stress level.

Something I didn’t know about was shift-sleeping. I mentioned this in a previous post, but when I commented to an acquaintance about the emotional and physical strain from lack of sleep I was feeling, they pointed me in the direction of working out a sleep schedule with Ash.

The idea is this: each partner takes a 6-hour shift at night to watch the baby while the other one sleeps during that block of time. When the time comes, the partners switch so each partner gets 6-hours of uninterrupted sleep each night. This gives each partner a chance to catch up on the sleep deficit and handle caring for a newborn better.

When Ash and I adopted this method of sleeping, it forced me to place a lot of trust in Ash’s ability to handle Jai without me for 6 hours at a time. I believe it helped Ash and Jai bond faster because while Ash wasn’t Mommy, he was another capable caretaker like Mommy.

This method was one that required my milk to come in and have enough stored for Ash or use formula to supplement, but I wish we had known about shift-sleeping from the beginning. It would have saved Ash and myself several weeks of tension and frustration. Some of the negative feelings came from my postpartum hormones, but I found that once I started getting a solid night’s sleep I was able to manage my emotions better.

Shift-sleeping fits in perfectly with my desire to go with the flow and because it forced me to trust Ash’s abilities, we were able to co-parent from the beginning. Once Jai started sleeping in his crib, we used a bassinet in our bedroom for the first month, we were able to resume sleeping on the same schedule in the same room. I know not every parent has a partner or even a supportive partner, so I acknowledge that this advice won’t help everyone.

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You Are Enough

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 personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided 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.


In this final post of my “parenting observation series” I want to leave this as the major takeaway: we, as parents, are enough for our children. If we provide food, shelter, clothing, comfort, and education, no matter how imperfect it may be, we are enough for our children.

There is a lot of outside pressure on parents to be perfect and have it all: have the perfect house, job, relationships, food, clothing, education – the list goes on and on.  No parent can ever win the external societal judgment game. The standards for good parenting as dictated by outsiders is so high that it can drive us bonkers.

For those of us with the added obstacle of a disability, seeing what parenting without a disability looks like can be even more discouraging. But our children rarely see the disability in the same way we do.

We must practice self-compassion and ignore everything the outside world has to tell us about our parenting abilities. The only people who need to be in our minds is our children and how they view us.

And surprise: our children will love us no matter what and overlook any perceived imperfections we think we might have. They are, at this point, incapable of seeing our imperfections.

Remember how you viewed your parents in early childhood: one parent was stronger than Superman and the other was the only perfect source of comfort. Sometimes both aspects manifested in one person.

Our children view us no differently. They don’t see the same flaws or recognize what we cannot do. What they see is what we are capable of doing and how that relates to them.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so while it may not speak to your experience directly, it may apply to someone else you know.

Being the Perfect Parent is Overrated

One of the biggest issues I have as a parent is worrying that I won’t be perfect enough for my son. I push myself to the point of overload trying to be perfect on a daily basis so it would follow that I would want to be the perfect parent to Jai.

This is not possible.

In fact, it is strongly discouraged to be a perfect parent for a child. Making sure that everything is done for them, they get all that they desire, the house is immaculate, and they get perfect grades every single time (so you help them out) – all lead to a dysfunctional relationship and stunt a child’s abilities to manage the real world in a healthy way.

If children do not learn about the world, how to manage adversity, and how to critically think through various problems if the perfect parent is doing everything for them, they will struggle as adults on their own. Learning about disappointment and how to manage it is a valuable life skill that gets lost if a parent avoids exposing a child to conflict as part of their perfect parenting routine.

Attempting to be the perfect parent can also create bouts of depression in the parent striving too high. This is not surprising because the attempt to be perfect outside of parenting raises a person’s chances of being depressed (I currently suffer from perfectionist paralysis in my own life).

By attempting to be perfect for Jai, I am setting myself up to be less able to help him if I am too depressed by my need for perfection. It’s a vicious cycle.

We want to fail as parents from time-to-time. It humanizes us to our children and helps strengthen any relationship that develops once they are adults. Providing a healthy example of failing in an adult and focusing on what they can learn from us and from their own failings will help promote long-term success in their own lives.

It requires a level of self-reflection that may be hard to swallow, but in the end, it helps us grow as adults too.

Saying “I am Enough”

All of this isn’t to say that we should go out and purposely fail, but to acknowledge in a gentle way that it will happen and that’s okay.

Focus not on any failings you might have such as “I could have done this differently today,” or “I could have handled that situation better,” but on what they teach you and all the positives you did throughout the day. Our brains are wired to focus only on the negative, so it is important to rewire them to allow the positive in more often.

If something happens that makes you feel like a failure, try these steps to work through it:

  1. Apologize to your child if necessary even if they are too young to understand. It’s a good habit to get into and makes it completely normal for them when they are aware of it.
    • “I am sorry I yelled at you when you took off your diaper and got poop all over the floor. I was upset over the smell and the mess I would need to clean up. I understand that you are not aware of how much I dislike poop, so I am not upset with you, just upset over the situation.”
  2. Figure out what you could have done differently and created a plan of action should the incident happen again. Spoiler: it probably will.
  3. Take a few minutes to breathe and comfort yourself. If you are tense or stressed out, make a cup of tea and allow yourself a few sips before continuing about your day.
  4. Forgive yourself for that failure. Remind yourself that you are not perfect and that is okay.
  5. Find a couple of things that went right during your time with your child. Focus on them any time you start to think about something negative.
    • “We sat and read three books, one of them being my favorite. I could tell my little one really enjoyed my favorite as well.” or “We ran around the chair for 5 minutes laughing at each other over how silly we were being”
  6. Repeat to yourself: “I am a good parent/caretaker, I do the best I can, I am enough for my child.”

All of this will take some time because we have to undo years of bad habits, but starting off slow will help build confidence and self-compassion in our abilities as parents. These examples will benefit our children in the long run. It’s really about focusing on what we are able to do – not what we can’t do.

And remember: you will always be enough.


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