Overcoming Mom Guilt as a Special Needs Mom
When I became a mother more than 35 years ago, I wasn’t prepared for how different my life instantly became.
All of a sudden I had a tiny, helpless human in my arms. Without any manual or degree in how to successfully raise a person to be an adult, this delicate little ball of coos and cries was my responsibility.
I found plenty of parenting books out there to prepare me for “What to Expect When You’re Expecting” but I could never have been truly prepared for everything that comes with parenthood.
Mamas, there are so many people telling you how you can mess everything up. No wonder “mom guilt” is a term you find all over the internet.
I was ridiculously inexperienced and, quite frankly, terrified I would mess up. The last thing I wanted to do was to make the same mistakes my own parents did. My newborn daughter offered me a blank slate to correct a potential generational curse and do things the right way. But I was young, and I found myself in a struggle to just be a new mom who was doing my best while I transitioned from few responsibilities to being completely responsible for another life.
But when you’re faced with your child having medical complications and extraordinary needs, the challenge to stay strong and focused becomes a mountain that is high and hard to climb.
I understand that because almost seventeen years ago, I gave birth to my last daughter, a beautiful baby who was born with devastating health complications.
Complications that almost took her life when she was five days old.
Despite being a pediatric registered nurse and International Board Certified Lactation Consultant at my local hospital, I could not get my baby to breastfeed. It was the sharpest dagger ever plunged into my gut in my entire life. I was the nurse who other nurses called when a mother was struggling to get her baby to latch and breastfeed. I could get any baby to breastfeed. ANY BABY. But not my own. Not my sweet Jade.
It felt like the greatest failure of my life. I was wracked with guilt. It felt like it was my fault. And nothing I did felt adequate enough to make it better.
When you set impossible standards and neglect to give yourself grace, guilt can be an all-consuming corrosive emotion, eating you from the inside out.
But that’s not true. That dark voice inside of you that says you’re to blame for everything wrong in your child’s life is a liar. I wish I had been able to find my road from brokenness to beauty far sooner.
And that is why I am here for you.
Because I don’t want you to miss out on the fullness of life your baby with special needs can have. It may seem like the weight of everything you don’t do and everything you do wrong is casting a shadow that you’ll never get out from under. But you’re missing the light from what is.
Your child is beautiful. You are beautiful. Not in spite of your brokenness - because of it.
Let me show you how to transform your brokenness into beauty and get out from under the shameful shadow of mom guilt.
Understanding Mom Guilt
You have no choice but to be intimately familiar with the guilt that comes with raising a child. You see it everywhere you turn. Social media. Within your own family. At church. Guilt and shame are screamed at mothers until we are almost choked out by them.
The emotion of guilt has a purpose, so don’t feel bad for feeling bad. When kept in check, it’s like an internal compass helping us know when to make amends.
The problem is when you feel bad about EVERYTHING. From minor mistakes to issues that are outside of your control to perfectly natural responses to difficult situations.
It can look or sound like:
I should make my children a nutritious dinner instead of getting take-out/fast food again
I shouldn’t look forward to time away from my child
I shouldn’t wish that my child’s needs were so great and accept them fully as they are
I should be contributing more financially so I can get my child more resources
I should be able to keep my child safe
I shouldn’t have yelled at my child
I shouldn’t let the house get this messy
I shouldn’t be prioritizing my child with special needs over my other children
It makes sense that you feel overwhelmed.
In fact, it would be inhuman for you not to feel pressure.
But that’s why it’s so important to understand these feelings so you can overcome them.
Mom Guilt in the Digital Age
Everyone seems to have an opinion about how to properly parent. We’re gagged with a dangerous cocktail of opinions, judgments, comparisons, and falsehoods from all directions.
From close, well-meaning friends to strangers in the grocery store who think they know better than you about stopping your child’s temper tantrum in the frozen aisle, everyone has something to say about how they would do things differently from you.
Then there’s the world of social media.
So many people only share the positives of parenting. It can seem like everyone broadcasting their lives online has it more together than you.
But just like I don’t post photos of myself two seconds after I roll out of bed in the morning, the parents who seem to always have it together are only posting mirages of what their family life is actually like.
As parents, we’re proud of our children and their accomplishments. We love to share that. And that’s great! I LOVE bragging about my Jadey Bug. I gush about her any chance I get.
But I don’t deny the darker side of our story. I don’t deny the hopelessness I felt when I first learned her diagnosis.
People talk about something called “toxic positivity”… an obsession with positive thinking.
I challenge you to reconsider your way of thinking about something that society deems as “toxic positivity.”
I don’t expect you to find yourself happy that your plans to parent have changed in the beginning. I don’t even expect you to embrace the magnificent different, the brokenness, or the beauty of your journey right away.
That will take time. And tears. And prayer. And if I’m being honest, a lot of screaming into your pillow in the middle of the night. (And for me, a lot of cuss words during the screaming.)
But the same society that says it’s not ok to find the positive side of tragedies is the same society that sees your child as different. The same society that defines what “normal” is and then taunts you with all you could or should have been given.
Run the other direction from anyone who puts emphasis on anything but the beauty of your child and of your journey.
They have nothing to offer you.
I will always encourage you to rejoice in the miracle of your child’s life and help you see all the beautiful things you’ll experience while raising them.
But I will also never tell you it is easy or that you’re a bad mother because you wish it was. We can find hope in all things and still be honest about our struggles.
We need genuine support to cope with what we face as parents of children with special needs.
If we pretend the challenges aren’t hard and bottle up the negative emotions we experience, we can never actually resolve them. Letting those feelings fester secretly will only make them worse.
That toll will wear on you mentally and physically.
Oh Lawd, It’s Hard
Following a diagnosis, there’s a whole cascade of feelings and responsibilities that will overwhelm you.
No one ever plans for this. That’s why I call it the Unchosen Journey.
Sometimes, we try to be prepared in the aftermath.
Some parents go into hyperdrive, asking the doctors, therapists, researchers, and Google all of their questions.
But don’t burn yourself out early spending every free second trying to control the future.
Another common response is almost the opposite.
These parents remain in a state of despair, disbelief, and even paralysis. They struggle to process the information thrown at them. They may deny the situation or spend their time thinking about “what if” scenarios as if somehow this diagnosis could’ve been avoided or what their child would be like without these extraordinary needs.
Often the response is a combination of both.
It can be extremely difficult when parents of a child with special needs respond differently. This can cause extreme tension between couples.
Surveys show that the rate of divorce in families with a child with disabilities may be as high as 87%.
Jade’s dad and I were unable to cross such a wide chasm together, and we eventually divorced when Jade was 5 years old. The ways that her disabilities impacted our relationship were crippling. And we didn’t know how to get through it together.
It’s no surprise that the percentage is so high. In addition to getting just a diagnosis, parents of a child with a disability have extra responsibilities.
Finding ways to fairly divide those responsibilities is a lot more stressful than determining who should do the dishes.
Ensuring your child has proper support is a stressful, full-time job. There’s calling, refilling, and checking on medications or medical apparatuses, driving to and from pharmacies or appointments, behavioral or physical therapy appointments, countless hospital visits, and then there’s the expense of it all.
You are bombarded with hundreds of worries, thoughts, scares, and questions:
“Do I quit my job to become a full-time caregiver or do I spend the extra money and hire someone to be a nurse or other form of caretaker?”
“What sort of programs are going to enhance my child’s social and educational circles?”
“Are there any support groups in my town or am I going to have to make one?”
“Do I need to become the loudest voice in the room to get my child the help they need?”
As a mother and caregiver, you will naturally become the advocate for your child who may not have a voice of their own in school, in the doctor's office, or in public.
It’s no wonder you might feel like you’re drowning.
You aren’t just dealing with Mom Guilt, you’re also grieving.
Grief and Guilt
You may be surprised to find the word “grief” here being used to describe what we’re feeling as mothers when our child is living.
But the turmoil inside of us when we first learn of their diagnosis feels a lot like immense loss.
We’re grieving for the things our children will never experience and the life they’ll never have.
We’re also grieving for the expectations we’ve set for ourselves as mothers. The life we dreamed of having with our partner and our children.
And in some cases, we’re grieving because the conditions our children have predict a shorter lifespan or a life that will never be independent.
I wouldn’t change anything about my Jade. But it took me time to get there. I mourned for the loss of a typical child but then found myself standing in a beautiful play where I wouldn’t trade one single thing about Jade. She is a perfect child of God who was made exactly how she should be.
There’s a popular idea of the stages of grief:
Denial > Anger > Bargaining > Depression > Acceptance
Parents of children with disabilities experience the first stage, Denial, very early on with the diagnosis. I can’t tell you how you will accept that the diagnosis is real and life-altering for you and your child, but in time you will not just accept it. You will embrace it.
Some use Anger as a coping mechanism. This can manifest as snapping at their partner, having a short temper, or lashing out at others in frustration. They might ask themselves and God, Why my child? Why me? Why do others not understand?
This anger can flare up easily. You remain angry at yourself, your partner, or even at God.
It’s easy to turn to resentfulness or jealousy of neighbors or strangers with “typical” children. The shield is now there to judge and snap at people who do not understand your child’s condition, or who stare at you and your family in public.
And then the guilt comes in, rolling in waves, that you should not be angry. You can’t be mad at your partner or people who simply do not know what they do not know.
But sometimes, this guilt is followed by more anger. You may direct it at yourself once you’ve exhausted all other external targets.
It’s an exhausting cycle to be stuck in.
This stage is followed by Bargaining.
Parents plead with those they just lashed out at in anger for answers, for a cure, for some ease of their pain–both for themselves and for their child.
When we learned Jade’s diagnosis I was devastated. I begged God for healing. My faith wasn’t much at the time, but I found myself pleading for Him to save me and Jade from what was happening.
I didn’t know what else to do. I just wanted a way out.
Then there’s the Depression phase.
This is where all the financial, emotional, and mental strains that have been causing minor fissures now can become compound fractures even in the strongest of relationships.
The relationships closest to you such as your spouse and your other children can suffer the most.
You can feel like you don’t get enough time with your spouse, friends, or other family members.
You can feel the guilt of giving more of your time to your child who has special needs than their siblings who don’t.
Like all phases of grief, it can be easy to self-isolate. But that’s the opposite of what you need when you’re at your lowest.
Find your tribe. Let people help you care for your child and yourself.
If you’re married, carve out time for you and your spouse regularly.
This can be as simple as touching base as you get ready for bed: “Name one good and one bad thing about your day” can be a great start to keeping this relationship and connection strong. Or pray together.
The final stage is Acceptance.
This often feels like a wake-up call.
“Enough is enough. I’m tired of living this way. It’s time to be who my child needs me to be.”
Anyone who has experienced grief will tell you these stages aren’t always linear. Sometimes, you move backwards before you move forward, but most of the time, you experience all the stages simultaneously.
Acceptance doesn’t mean you’re never angry or depressed again.
What it does mean is taking the steps necessary to get out of the dungeon that grief has put you in.
The Impact of Guilt
Some levels of guilt are normal. It’s a natural response that drives us to make amends and fix our mistakes. But when the feelings of guilt become excessive, they can truly affect all aspects of your life. Guilt can manifest itself through a variety of symptoms affecting your body and mindset.
Here I listed out the different symptoms of excessive guilt:
Physical: Low energy, sleep disruptions and insomnia, weight gain or loss, increased blood pressure and/or heart rate, aches and pains, low sex drive, and headaches
Emotional: Anxiety, depression, Low self-worth/self-acceptance, short fuses/ easily frustrated or angered, numbness
Mental: Inconsistent mental well-being or poor mental fitness, inability to focus, memory lapses, time blankness
Spiritual: Sensations of wandering or hopelessness, lonely and without guidance particularly for the future
There are also habits in our daily lives that can be signs of guilt getting out of control.
Negative Coping Strategies are the things we do automatically or “like” to do to avoid difficult feelings. For example, someone may find themselves indulging excessively in food, shopping, substance abuse, or a device such as a phone.
Becoming reliant on these practices helps “numb” us by lighting our brain receptors up with reward chemicals. Except, we didn’t do anything to earn it, and we’re doing it in excess. These now become negatives in other ways through weight gain, financial strains, or more guilt for spending time on our devices instead of quality time with our loved ones around us.
Speaking of phones, spending too much time on your phone playing mindless games or scrolling on social media can be a means of distraction or escape as well. Gravitating to your device the millisecond you have a free moment allows many to become numb to the reality around them.
The problem is when your phone or other device becomes your only coping mechanism. Trying to go numb every time you have a free moment will only exacerbate all the symptoms I’ve listed above.
Another sign of excessive Mom Guilt is what I call “Trying to do it all,” meaning you believe you have to be working, cooking, cleaning, and staying fit, all while taking care of your child in order to be a good mom.
And it doesn’t stop at being a mom. You find yourself needing to be perfect at everything, not just day-to-day tasks with your children.
You have to be a perfect daughter, spouse, friend, and professional. After all, some people make it look possible (remember all that talk about the social media mirage?).
And maybe for a while, you can. But eventually, trying to be everything to everyone leads to burnout.
The Risks of Burnout
If ignored, guilt, grief, and all the other emotions can overwhelm and overtake the body.
Signs and symptoms of burnout include:
Exhaustion or bodily fatigue
Mentally checking out
Inability to relax or rest
Emotionally volatile
Frequently sick or the inability to stay well
Cognitive issues such as trouble focusing or memory issues
Depression and/or suicidal thoughts
Rarely spending time with friends or hobbies
I hear you. I see you. The temptation to lose yourself to that darkness can seem like the only option.
And the tough truth is, you’re no good to your child if you let yourself get this far gone.
I’ve been there.
I’ve been in the deepest trenches.
I was so low that I wanted to end it all.
But you have it in you to become the Warrior Mama your child needs you to be.
Don’t give up hope.
Your child needs you. Not the imaginary version of yourself who never makes a mistake.
You.
So you have to get out from under this blanket of hopelessness so you can truly be there.
It’s time.
Overcoming Special Needs Mom Guilt
The most important thing I can tell you is that you are not alone.
I’ve been there. So many others have as well.
I’ve worked with parents and their children with special needs for more than fifteen years now.
And I’ve watched so many experience a transformation
It’s a long, tough journey but it’s so worth it for the sake of yourself and your child.
Find Your Tribe
This is the advice you’re going to hear from me over and over again.
But it’s worth repeating.
Have you ever heard Aesop’s fable of The Bundle of Sticks?
A father was tired of his sons quarreling and gave them an object lesson. He tied a bundle of sticks together and asked them to try and break it. Each son took a turn, but none of them could snap the bundle. Then the father untied them and gave each son a single stick, which they snapped in half easily.
Unity makes us stronger.
Solitude makes us fragile.
Let people into your world and share in the care of your child if that’s possible.
Family members, close friends, your spouse… let people take over so you can have a break.
A friend can come over and watch your other children while you tend to the one with special needs.
It might feel like it’s all on you, but you can’t do it alone.
You may be afraid of being a burden by asking. But more likely, the people who care about you want to help but don’t know how to offer it.
And it doesn’t have to be limited to the people you already know.
Go online and find support groups in your area.
Finding your tribe is a game changer.
You’re not alone. And neither is your child.
According to the CDC, 1 in 6 children in the U.S. have one or more developmental disabilities.
There is a forum, community, or group out there for your children and you. Find support there with individuals who are struggling just like you. You may even be able to help take care of one another or set up conferences to benefit even more parents of children with disabilities.
The possibilities are endless but you have to take the first step to find and embrace them.
Practice Self-Care
In the middle of my storm with Jade, I found myself trying to keep the ship from sinking… not making sure my own needs were met. Where was I possibly going to find time for any sort of “self-care?”
Work your way up to taking a bubble bath. Or going for a walk. Or taking a friend to lunch and shopping.
When you feel yourself feeling guilt or anger over something related to being a mother or your child’s special needs, just take a breath and be patient with yourself first.
Acknowledge that emotion, feel where it rests in your body, and let it go on your out-breath. Then on the next breath, find the gracious response to what you’re feelingYou don’t have to deny the feelings. Acknowledge them and train yourself to change the narrative.
Some examples include:
You’re a terrible mother. → I am doing the best I can in my circumstances.
You should care more. → I do care. I am here, in the present.
Changing the way you think may sound impossible. Our reactions are automatic so they feel outside of our control.
But developing self-compassion is the same as building muscle. Over time, challenging your negative self-talk will become easier.
And with enough practice, you’ll be able to keep the bully in your brain from being the loudest voice.
Of course, I fully endorse other forms of self-care too.
Talk on the phone to a friend.
Have someone watch your child so you can go sit and read a book in a coffee shop for an hour.
Take a long shower.
Find those little moments of peace and restoration.
Remember that you can’t pour from an empty cup. Caring for yourself is necessary if you care for others.
Challenge Societal Expectations and Norms
Every day we’re bombarded with pictures, videos, reels, posts, and news feeds that talk about how to do and be better.
Every advertisement tells you what you’re missing, how you can improve, and even how you’re failing at something you didn’t even know you were supposed to be doing.
It gives you whiplash. It makes you jealous. It can make you depressed.
So challenge it.
Why are those standards the ones you have to measure up to?
Why do society’s markers for success have to be yours?
There’s such a stereotypical way we talk about motherhood and raising children that makes those of us parenting children with special needs feel invisible.
Society tends not to know what to do with people with disabilities. Sometimes, frankly, our culture is uncomfortable with people who are physically or mentally different and struggle to make space for them.
Every day you’re figuring out how to navigate a world that isn’t built for your child.
You should not feel guilty making space.
So challenge the standard the world is giving you.
Make your space. Define your successes.
Every day you have the opportunity to discover authentic joy with your child.
Celebrate the Victories
Once you determine what success looks like, make sure to celebrate it.
It’s easy to let the bad days win. It’s easy to allow the meltdowns, pinching, machines beeping, 200th diaper change, or 11th seizure, and all the other negatives to completely overwhelm and consume your day.
Remember to celebrate the victories no matter how small they seem.
It can be anything from your child making a friend to them finding a new safe food to you remembering to pack everything they need for school.
You’ll have to find the routine and the rhythm that works for you and your child.
It is so easy to nitpick and analyze everything we could have done better or everything that goes wrong.
Build your child’s confidence and your own by taking the time to really enjoy the highlights.
Embrace the Unique Journey Of Special Needs Parenting
From the intense heat of the diagnosis, the doctor’s visits, the hospitalizations, the therapy appointments, and the massive pressure of caring for a child with extraordinary medical needs, the ground beneath our feet meant to be stable has been disrupted when we least expected it.
But you will learn to transform. To grow. To appreciate. To love your journey.
Just like the gemstone Jade is formed under intense heat, massive pressure, and tectonic plate movement, Jade and I also were transformed into something beautiful.
I challenge you to embrace the truth that you and your child are transformed… transformed into beauty under pressure.
Remember that your child is a gift. Your child is beautiful, unique, and so much more than their disability. Look for the moments when they smile, clap, or do something they didn’t do the day before.
Embrace this magnificently different road we did not choose but bravely and willingly travel.
Find ways to get involved in advocacy for people with disabilities in your community.
Get involved in support groups and help other parents who are figuring out how to give their children the best lives possible.
Know When to Seek Help
Sometimes, positive affirmations or an evening out with friends are just not enough to recover.
Sometimes, even when we put our best efforts into avoiding burnout, it happens anyway.
When you find you’re losing yourself and your mental and physical health start slipping, remember there is no shame in getting additional outside help.
1. Find your tribe (your support network):
Parents of special needs children often feel isolated. But it’s time to call in reinforcements.
As I said earlier, it’s important to find your tribe.
Find a support group, online or in your local community. This could mean a local church, an after-school program, or a Facebook group.
Find people who understand what you’re going through and offer advice and maybe even have local meetups, activities for kids (that cater to special needs), and can offer you support as a parent.
Even the most well-intentioned loved ones can miss the mark with their support. Sometimes it takes talking to someone who has been in the trenches too to help you out.
If you can afford it, hire a caretaker.
Find out if there are programs in your city or state that provide aid to families like yours.
You’re not a bad parent because you need help.
2. Seek a Mental Health Professional:
If you find yourself in a hole you truly can’t get out of and the guilt is too much to bear even with the support of friends and family, it may be time to find someone more qualified to help you.
There’s no shame in it. It’s easy to ignore your own needs when your attention is on the needs of your child, but you can’t help others if you don’t take care of yourself.
Finding a therapist or counselor can be a daunting task. From finding one that fits you to finding one that you can afford, there are a lot of obstacles that can hold you back.
Luckily there are so many options when it comes to therapy.
Websites like Psychology Today offer a directory of mental health professionals. You can use this to help find therapists in your area who specialize in the areas where you need the most help.
Many therapists offer a sliding scale based on income.
Support groups in your area can also direct you to resources like government-funded aid or local organizations that offer mental health services specifically for people with disabilities and their families.
3. Spiritual Counseling:
Jesus and I weren’t exactly on the best of terms when Jade was born.
I didn’t pray much before her diagnosis. Then after, well, my prayers were mostly begging and blaming.
I felt as though Jesus had abandoned us.
When I was at my lowest and loneliest, I was sure that Jade and I had been forgotten.
It took a Christian biker gang praying over Jade to change something fundamental in me.
I found comfort in the least likely of places with a group of people I had almost nothing in common with.
I looked at Jade with clear eyes and finally saw the miracle and the divine gift that she is, just as she is. I may not have chosen this journey, but I was chosen to be her mother.
If you’re a spiritual person, find comfort in your faith community.
Many churches offer counseling services.
Don’t allow guilt to weigh heavy on your soul.
If you’re a Christian, remember that forgiveness and grace are fundamental to our beliefs.
If you can believe you’ve been forgiven of your sins by God, you can forgive yourself for not being the perfect mother. Nobody on this earth is perfect.
Take Care and Don’t Give Up
When I became a mother, it changed everything.
When I became a mother of a child with special needs, it changed everything again.
And while I didn’t choose this journey, I wouldn’t trade it, or Jade, for anything.
Every bad day, every dark moment, and every way I have been beat up and beat down has made me stronger, more empathetic, and better able to care for my Jade and help other parents like me.
I’m so grateful to get to spend my time with the Warrior Mamas and Daddies of the world and their magnificent different children.
When you care for a child with extraordinary needs, it can be easy to get caught up in the differences.
But it also gives you new avenues to gratitude.
You may have to search every square inch of your life every day to find the miracle that kept your child alive that day, but I promise you this: it is there.
And you will find it.
Don’t get caught in comparing yourself to other parents that you think you should be like.
Your mental and emotional well-being aren’t things that you must sacrifice in order to be the perfect mother.
They are the foundation that will make your road from brokenness to beauty possible.
If you ever feel that the grief, guilt, and shame is too much, seek help.
But don’t you ever give up.
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