written by Janet Favorite
Winter is the best time for me to write. I can think of so many other things to do when it’s warm and inviting outside. The garden needs watering or weeding, my dog needs walking, wouldn’t a swim feel great, or it’s a good day to ride a bike or horse. I have many interests, as I’m sure many of you do. Our hobbies or passions can be a sanctuary when life becomes difficult.
Caregivers of Special Needs children need a sanctuary, a place they can just be. So many of the comments I read on social media are asking for help or advice. We are afraid a lot of the time. As a parent of an adult male with Prader-Willi Syndrome, I have experienced fear. It can consume all of your identity. You become focused on fixing the problems. You use business, or substances’ as a way to keep yourself from feeling.
It’s ironic that this syndrome that mimics addiction, will cause codependency in parents’. This is not a judgement on my part, the last thing any of us need, is someone saying you need to do more or do it better.
At the recent Prader-Willi Syndrome National Convention, Greg Cherpes, MD, spoke about mental health for parents. I admit I attended his talk because I had misread the description and thought it was about mental health for people that had the syndrome. I’m sure many of you are scanners, like me. It can get you to place you didn’t think you would go to.
Dr. Cherpes stated the two most common mental illnesses for parents of special needs children are depression and anxiety. You may think to yourself, of course I am depressed and anxious I have a special needs child. For many years I struggled with untreated depression. Many of us still think of depression as just being sad, but it is so much more. It can lead to withdrawal, self-criticism, indecision, memory trouble, and thoughts of suicide.
As caregivers we also experience what Dr. Cherpes referred to as Traumatic stress. We all think of that in relation to war or a violent incident, but those rageful meltdowns, picking behaviors, constant vigilance of food consumption, and sibling conflict can also trigger traumatic stress.
The good news, help is available. Many mental health issues are now handled by a family doctor, the first step, an appointment. Medication can be lifesaving and help us cope. Meditation, Biofeedback, deep relaxing breaths, yoga, daily exercise, affectionate relationships, can all increase mental health.
The “too busy” excuse may sound like you are an angel of mercy to your demanding family. “Too busy” to take the same care of yourself that you take of others? Don’t your loved ones deserve someone who can be fully present, engaged, and enjoying the one life they have been given?
Our son has lived in a group home for ten years now. It still seems like I am on vacation. I no longer handle “meltdowns,” the staff at the group home manage those. A whole team now strategizes how to minimize them. I am just a Mom. I still have concerns and am involved in making sure my vulnerable adult gets good care.
I have been a fulltime caregiver, and I can state with great certainty that looking after myself, taking time off, seeking help for mental health, saved my life. It certainly saved my family from enduring an exhausted, angry, passive aggressive, overwhelmed, parent. Give yourself permission take good care of yourself.
written by Amanda Grant
We always see things more clearly when we look back on them...right? My son recently turned 4. I can see now how raw and depleted I was for the first two years or so after he was born. I wish I could go back in time and wrap my arms around myself. Whisper in that new mother’s ear that it is ok, and that it’s going to be ok. I wish I could tell her to give herself a break. To be gentler with herself. To rest more. To take better care of herself.
The reasons why I might have felt the way I did don’t feel important now, but honouring those experiences and looking at them from a new, more compassionate perspective, does.
My son and I spent the first 10 days in the NICU. My baby had a bit of a traumatic entry into the world and needed to rest. He needed to be fed through a g-tube to gain enough strength to learn to nurse. My husband was allowed to be with us for the first few days, but then we were transferred to a unit that had no spaces for fathers overnight. I was on a strict schedule of nurse, pump, clean and prep the pump for the next feed, then sleep - every 3 hours. And then there was trying to eat and actually care for my sweet baby boy. I was told to continue with this 3 hour schedule, 24/7, when we were able to bring him home. And I did - faithfully. Until I Just. Couldn’t. Do. It. Anymore.
My son slept in a bassinet beside the bed, often waking and needing to be nursed, held, rocked, or have skin-to-skin contact to fall back asleep. And he wanted nothing to do with my husband during his wake-ups. I had never been so exhausted in my life.
We were lucky to receive early intervention services to check on his development because he was on the small side when he was born. I said “yes” to everyone and everything offered because I couldn’t bear my anxious thoughts of possibly missing out on something my baby needed. This meant there was an almost never-ending stream of professionals in and out of our home. I so desperately wanted to be the best mother I could be. To give my child everything. And these women were wonderful and well-intentioned and gave me some much needed adult company during the day. But one of the problems was that I ended up essentially outsourcing my parenting instincts to these professionals. The longer it went on, the more I found myself looking for their direction and reassurance.
Then my son was diagnosed with neutropenia. This meant we had “fever rules” that told us when we had to take him to the ER at the children’s hospital, 45 min away. They had to determine if the source of the fever was a bacterial infection, because if it was, his body didn’t have the capacity to fight it. At the hospital, our baby would need to be poked for blood work and an IV for possible antibiotics. I was asked to help hold him still and comfort him the best I could as he wailed. I had never known the feeling before of wanting to put myself into someone else’s shoes to literally take their pain away. Even now, as I write this, I can see and hear him crying. Tears well up and I can feel it in my body.
I’ve always been a little prone to anxiety. I was exhausted. Now there was a medical reason for me to be on high alert. And, indeed, on high alert I was. I was wound up so tightly and checking my son’s temperature for a possible fever far more often than was necessary. I started to have trouble regulating my emotions. Feelings of anger sometimes rose up in me that I didn’t understand or know what to do with. And I felt like I couldn’t take any time “off”, even though my husband often encouraged me to.
I couldn’t see clearly how worn out and unsure of myself I was. But I was also blissfully happy to be with this beautiful creature whom I had waited so long for. I had never felt such intense love, nor had I even imagined it was possible. Putting these feelings into words now, it almost seems like a strange combination -being so anxious and worn out, yet so full of love. Yet I am willing to bet it’s a combination that many other mothers have experienced.
The beginning of a turning point for me came one day as I sat talking with an amazing counselor. She told me I had to lower my expectations. I had heard the term “good enough mother” several times before. And it made the perfectionist in me cringe every time. My inner voice said defiantly, “My baby deserves the best! Not just ‘good enough’!” Which of course translated into, “I need to be the perfect mother.” Which of course was, and is, impossible. And it left me feeling like I was failing him and myself.
Then, during another session, my counselor said something I may never forget. She said, “If you treated your son the way you treat yourself, I would have him taken away from you.”
Her words made everything in me come to a stop. There was no clearer way she could have shown me that how I was behaving toward myself was completely unacceptable.
I won’t pretend I had an overnight transformation into always being kind and compassionate with myself. But her words have come back to me time and time again. I would NEVER treat my child this way - or anyone for that matter. So what on earth was I doing treating myself this way?
I have learned a lot about self-compassion since then. I think it may always be a work in progress, as can be the way with anything truly worthwhile. I have learned that I feel better when I am kinder to myself. When I take better care of myself. When I speak up about how I feel, or what I need, instead of pushing it down because it might be inconvenient for someone else.
And science fully supports this. There seems to exist a societal notion that having self-compassion means we are letting ourselves off the hook or that it will make us lazy. We somehow feel that berating ourselves will motivate us to do better, to be better. But that couldn’t be further from the truth. Stress, guilt, and shame actually shut down the learning centers of the brain. They turn off our ability to see a situation clearly, to think creatively, to problem solve, and to learn from our missteps.
Here’s another wise tidbit from my wonderful counselor - she told me it was actually selfish to allow myself to spin around in a cycle of shame and self-critical thoughts whenever I felt I had been less-than-perfect. Why? Because being in that state robbed me of the ability to actually be present in the next moment to meet the needs of my child. And she was right. Nothing good ever came from allowing myself to spin a whirlwind of self-judgement. But if I’m being honest, stopping that whirlwind was not an easy feat. Patterns of thinking and behaviour that are long standing are etched into our brains; it takes time and repeated practice to carve new pathways.
We can’t change what we aren’t aware of. The first step to transforming anything that is unhealthy or undesirable is to notice it. Then we need to accept it. This can be challenging because people don’t want to accept something they don’t like. But we need to accept, with kindness, what actually is, here and now. Maybe you would like to deny that you speak harshly to yourself, but that’s going to make changing it impossible.
Kindness and curiosity activate the learning centres of the brain. And that doesn’t mean there aren’t circumstances when we could have done better or that we are letting ourselves off the hook. It means we offer kindness and compassion to ourselves and gently remind ourselves to make a plan to do better next time. This route is actually the way our brain is most receptive to learning and changing our behaviour in the future.
Is harsh and judgmental self-talk the predominant language of your inner voice? Self-critical thoughts are perceived by the brain as a threat and our fight-or-flight system is then activated. There is enough stress in our world - surely we don’t want to add to that for ourselves? Conversely, when we are kind to ourselves, we can positively affect both our minds and bodies.
I am not a problem to be “fixed” - and neither are you. We are whole and worthy of love, based solely on being human and being alive. We need to be gentle with ourselves. What would change for you if you could offer yourself some care and compassion instead of criticism or judgement? Try giving yourself a warm hug - mentally or physically - and see how that warmth can spread.
written by Carrie Hunsucker
A mother of any child will tell you that raising children, managing a household, and being a good partner/spouse is difficult in any situation. If you add in the extra responsibilities and stress of raising an exceptional child, it gets even harder. You may get a chuckle out of the concept of pursuing your passions while navigating the special-needs journey.
It may be hard to visualize a life where you have the time, energy, and resources to follow your passions or pursue your dreams. However, regardless of your situation, I do believe that following your passions is possible. And I want to do everything I can to help mothers of exceptional children who desire to seek personal pursuits.
I believe that mothers of all shapes and sizes can structure their lives to allow for a rich personal life. It takes some work and forethought, but passions can be pursued through these steps:
The first step in any plan is defining the end goal.
If you haven’t had time to reflect on your dreams, I’d suggest you block out an hour to do so. I’ve been using the strategy found in The Passion Test book for many years, and this method of identifying your true passions has served me very well. (This book is on my list of books that have significantly impacted my life!)
Twice a year (typically New Year’s Day and July 1), I sit down and delineate “My Ideal Life”. I brainstorm with the following prompt:
“In my ideal life, I…
I then fill out the three categories with all the things that come to mind. No judgments, just freewriting all the things I want to do, be, or have in my ideal life.
Next, I combine all the bullets from these lists and rank them. I like using the Prioritization Grid created in the What Color Is Your Parachute? book. I find this tool very useful for ordering any list.
Once I have my list prioritized, I copy the top five items into a journal or blank document. I spend some time reflecting on each goal. I turn each bullet point into a SMART goal, which means that it is Specific, Measurable, Achievable, Relevant, and Timebound. You can read more about SMART Goals here.
It may help to journal about these five dreams or create a vision board. Whatever works for your personality and motivation. I’ve been using this method since 2010 and look forward to the creation of new or continued goals every six months. I find that six months is a reasonable timeframe for me to refocus, as I tend to get bored if I only “dreamline” once a year.
I often find that I only am pursuing 2-3 of the “passions” I’ve created for myself by the end of every six months. I think it’s only really feasible to focus on 2-3 goals at a time. The most important ones over the six months capture my focus and attention, and the rest become less of a priority.
After you’ve defined your goals, the next step is to eliminate anything that isn’t necessary towards keeping yourself and your household running.
Remove anything extra that isn’t helping you towards your ambitions. Since this is different for every person, only you can decide what is essential to keep on your agenda or to-do list.
I like to run every task and relationship through this litmus test: Is this task necessary to you and your family's health and well-being? Keep it. Does a project help you focus on those passions you prioritized? If it doesn’t, and it’s not necessary, remove it if possible. If you can’t remove it, can it be outsourced?
It also helps to put your relationships through this test. Do your friends help inspire you to reach for your goals? If not, perhaps you should spend less time on those relationships. You’ve probably heard that you are the average of the five people you spend the most time with, so stop and consider to whom you’re giving your time.
Those that know me well know I’m a big fan of everything the author Tim Ferriss puts out. In The Four Hour Work Week, a book about time management and lifestyle design, he presents the following flow chart created by one of his fans:
I took the liberty of recreating this flowchart to fit the possible priorities of a mother of an exceptional child:
As you review your habits and your routines, think about what isn’t necessary for you to do anymore. What can you eliminate? What can you batch together to reduce wasted time (we all know now that multitasking isn’t productive!). For example, do you run to the grocery store four times a week because you don't have a meal plan? Could you make crockpot dinners to save time or meal prep on Sundays?
Think about what you can outsource. My retired mother-in-law is a great help because she helps me research equipment, treatments, therapies, etc. She wants to help us with Hazel's care but lives seven hours away. Her efforts are one way she can help me with the tasks involved with having a child with special needs. (And she's very good at it, and I'm very grateful!)
When you free up your time by eliminating, batching, and outsourcing, you will be able to carve out a free hour once a week or day to work toward your personal goals. Finally, following your passions while raising a child with special needs takes the right mindset.
You must prioritize your wants and needs as highly as you prioritize your child's or your partner's.
I know this is very hard for many mothers because we are trained to believe we should be martyrs to our families.
But do you want your child raised with the message that a mother is less important than all members of the family? Do you want your daughter to sacrifice her personal life because she chose to have children?
Putting your wants and needs as an equal priority as your family’s is vital for your health and longevity. As I've said before, we are in this for the long haul, and we need to keep ourselves healthy and strong so that we can be the best moms for our exceptional and typical kids. If we don't prioritize our fulfillment and health, we may suffer mentally, emotionally, and physically!
Prioritizing yourself means putting your personal goals and pursuits on the weekly calendar. It means sitting down on Sundays and placing an hour on Friday that you get all to yourself, where you can work on your passion projects because you've defined what they are and how you're going to achieve them already!
It means communicating with your spouse about your need for time to devote to your fulfillment. It means keeping that commitment to yourself and not scheduling something during that placeholder (unless it is not moveable or is urgent).
It means asking for help to get the time and energy to focus on those goals. It's finding a babysitter, respite services, or another form of caregiving for that particular block of time each week. It's OK to ask for help and take that time to serve your own needs!
I hope my path to following my passions is helpful to other moms who struggle with placing a priority on their inner lives. It takes a commitment and some focus. But moms of kids with special needs can and do have rich personal ambitions. For me, it took creating a process of defining my dreams, eliminating unimportant tasks, outsourcing the outsourceable ones, and re-training my mindset to place a priority on myself and my well-being.
What about you? Does this process resonate with you? Or have you created a different method for working towards your dreams, both small and large?
written by Rory Hunter
This month marks the one year anniversary of the COVID 19 pandemic. A year of collective grief for the world. We grieve those who have lost their lives. We grieve for those who are struggling to make ends meet during economic crisis and job loss. We grieve for our normal lives and the disruption in routine. We grieve for our children, their education and mental health in isolation. We grieve for our community and friendships, the loss of personal contact. We grieve for our brokenness as a nation, racial injustice and tensions. How our hearts ache with this tremendous grief!
The weight of this year has been heavy on my heart. My mantra of “Don’t get sick!” has been deafening. The anxiety I carry to stay healthy as a widow/single parent raising three children never truly lightens. I wonder what the effect of this COVID year has had on the ongoing stress of single parenting, raising a child with special needs, and grieving all of the loss of the past. Can my body withstand a continually breaking heart?
I had to have my heart checked. This thought hounded me. My paternal grandfather died around the same age from heart failure and my father suffered from a heart attack and underwent double bypass surgery about eighteen years ago. I had convinced myself that I would follow the same fate. A month ago I received an email from a local hospital with the subject heading “The latest in heart health news”. Now I don't believe in coincidences, so I knew I needed to inquire about the heart screenings they mentioned in the email.
After three hours of tests, questions, EKGs and ultrasounds, I am happy to report that my heart is pumping and working like a champ. All valves and arteries are squeaky clean. Nothing to worry about on the heart front. There are still countless other concerns I can focus on and keep my “Don’t get sick!” mantra alive, but I will set those aside for a moment.
The heartache we feel in grief is real. The ache I felt all year was reminiscent of the other times in my life that I suffered from loss. If my heart is able to continue to beat strong in spite of the ache, and the grief I feel is not going to kill me, if it is not a warning signal, then what is the point of it?
My initial reaction to the ache is to withdraw, hide and hope that it subsides quickly. Yet, what if the ache is not a warning signal but an invitation? What if it is not something that we should hide from, ignore, drown out, or numb ourselves from? What if it is a sacred moment that we must step into? Glennon Doyle explains the purpose of this ache in her book “Untamed” when she writes, “The Ache is not a flaw. The Ache is our meeting place. It’s the clubhouse of the brave...It is where you go to meet the world. The Ache is love.” It gives me peace to think of the commonality of humanity. To grieve is to be human. Perhaps we were never more human than we were this year. Perhaps we were never more aware of each other as we were this year. Perhaps this year was an opportunity to love one another in our collective grief.
I pray that COVID will soon be a distant memory, but I know from my own life experience that no one is immune to grief. We all will feel the pain of heartache at some point. Don’t be afraid of the ache. Think of it as the world welcoming you into the clubhouse of the brave, and this card carrying member will be there waiting for you.
written by Laura Lee
When something goes awry, or not as planned or feels like a bump in the road, it doesn’t cancel out the good that has already happened.
Anyone? Anyone hit a hard place and fall into thinking “it’s all gone to sh*t, etc.” It was never any good. What was I thinking?
Reframe this stat.
That bump might turn you around to a greater path.
That unexpected turn might be the thing to set it all ablaze in a good way!
That awry upside down moment that felt like a gut punch might be exactly what you needed to learn you are enough no matter what after a lifetime of believing a lie that said otherwise.
That turbulence might be there for you to see yourself walk through it and come out the other side stronger and wiser.
You are the same person you were before that turbulence came. It did not cancel out the good that came before it.
The good cannot be cancelled.
It just IS.
It is YOU.
I wrote this Instagram post last week.
As I sat down to write a blog post to share with you. I thought to myself, YOU, yes you, mom out there with a child or children who have needs way beyond what you thought were possible, you know better than anyone what turbulence feels like don’t you?
Perhaps 2020 even rolled in with a bang and it triggered a similar feeling of when the unexpected happened when you became a mother of a special needs child.
When there were days, weeks, years where you couldn’t see an end to the struggle or the exhaustion or the fear of “what will happen now?”
I see you.
Perhaps you more than anyone, have come to know turbulence in your life, as familiar as the sun rising in the morning.
I see you.
And perhaps you have had days, weeks, and years where you were angry, grieving and full of questions that had no answers.
But perhaps you also know and have moments of pure awakening, throw it all to the wind joy and broken open raw surrender that led to an aliveness you didn’t know was possible.
Perhaps you have experienced both in your world. I hope so. Because sadness and grief are not your home, even though you may be asked to visit them more often than you expected. Or more often than most.
What I have experienced is a broken dream is sometimes just a broken expectation. And when I can see clearly my expectation, I can let it go. And when I let it go, I have a whole new canvas to paint on.
I get to paint a picture that includes all of the emotions, the colors, the sounds, the textures and the feelings that pour through me, as I experience life. So does my child.
I no longer have to paint within the lines or keep my gaze on one part of the painting. My brush is free to roam and let it show me the majesty and the beauty waiting to be unleashed!
I think the struggle is when I try so hard to stay within the lines and try to make my child do the same. Those lines may look or sound like, going to a certain school, or acting a certain way, or having a certain number of friends, or being at grade level in school or you get the idea……..These are constructs we’ve been given that we sometimes unknowingly measure our ok’ness, our enoughness, our level of belonging. But when we step back and look at our lives and our child and the whole of what is possible, we can see, there are no lines, only the ones we believe are there.
Yes, you and I have the choice to paint the picture that is begging to be unleashed. And perhaps you and I are the wayshowers. We’ve tried to stay in the lines in our life, and we have a child who shows us daily, that won’t work here. hat is not an option.
So dear Mom, will you join me in releasing the lines, the expectations, the rules and let your brush flow across the canvas? There will still be sadness and grief there. Life will still have bumps and hard moments and days of pure exhaustion, but oh how it will also have so much more freedom and beauty and joy!
Scream out loud when you need to or scream in your pillow! Dance with abandon! Laugh so hard you cry and let your child see and feel this from you! You can have these moments and sit down in IEP meetings, change feeding tubes, advocate for therapy. There is no mold you need to be fitting into.
And remember…hard moments, tough situations, unbearable loss does not cancel out the good that has already happened. The GOOD that happens daily in your life. Although it may be harder to see on a tough day, it’s there.
The good cannot be cancelled.
It just IS.
It is YOU. It is your precious child. It is that small moment, that tiny breakthrough, that kiss, that smile, that color, that fresh canvas, that story you are allowing to come through your brush as you paint outside the lines.
Mindset Shifts & Practices to support you:
All my love to you mama!
If you need further support or just want to connect with me, I would love to hear from you! You can find me here:
www.lauraleelife.com or on IG @lifewithlauralee
Laura is a mom, wife, daughter, sister, friend and certified master level transformational life coach. She stands for all women everywhere ditching “should’s” and shame, and choosing instead to tap into the call of their heart and unearth the passions that make them truly shine.
She shares her intuitive wisdom and light with women as a transformational life coach, through her writing, speaking, and leading group programs and retreats for women. She holds a safe and sacred space for healing and leads women into the depths of their desires. Her greatest joy and purpose is to help women uncover and reclaim the divine soul assignment that they are being called to.
Laura recently moved to Franklin, TN from Los Angeles and live with her husband and 3 boys.
written by Susanna Peace Lovell
Self-care has been at the forefront of my journey as a special needs parent but it has taken many years of practice and training for me to get to the place where self-care is actually a non-negotiable part of my life.
Studying for years under my spiritual coach, Suzi Lula (www.suzilula.com) I learned how to redefine self-care. It’s not necessarily just about eating well and exercising. It’s about listening to and honoring what is currently going to serve my highest good in moving forward and staying connected to honoring the needs of my truest self.
Deepak Chopra gives a guided meditation around “Making self-care a priority” and shares this definition: “Self-care means directing our thoughts and feelings toward actions that support ever present awareness.”
Self-care is a dynamic practice and can take different form each day. I wake up in the mornings asking myself, “What does self-care look like for me today?”
I love the deeper work around redefining self-care. Most humans on earth agree that health and wellness are paramount to living longer and fulfilling lives. Yet, when it comes to us as a parent taking focus away from our child (in any capacity), the guilt creeps in. We live in a culture where sacrifice and suffering is revered. We praise new parents who don’t have any help. It’s a stamp of good parenting, in fact. I’m not saying that everyone who proudly states they are “doing it themselves” is not authentically and joyfully engaged in parenting bliss. All I’m pointing out is that it is much more likely to hear accolades for those who don’t have help than for those who do. This is where the judgment comes in and where the guilt finds us for leaning into help when we need it. Obviously, this narrative needs to shift.
A few years ago, I was inspired to put together a handbook on everything I’ve learned about self-care and “7 TOP TIPS for Self-Care as a Special Needs Parent” was born. I shared these teachings during a session at WABT’s first annual virtual retreat in September and now I am happy to share them in our blog!
I will share each tip and some insight behind each. Let’s take a breath together and dive in!
Tip #1: Speak Your Truth
What does this mean: to Speak Your Truth? For me, it means to know who I am, what works and what doesn’t work for me, what feels in alignment with who I am and what my purpose is. It also means that as a parent to know what may or may not work best for my child. Do I know exactly who I am at every crevice of my being? No, I am still in the process and it changes along the way. We do not need to know 100% of ourselves though in order to speak our truth, we just need to tap into who we are in this moment and how we can stay in our integrity.
What I do not mean by speaking your truth is to feel like you have to share all of your innermost secrets and private feelings. No. What I mean by speaking your truth is to speak up as advocates for ourselves and to be comfortable and give ourselves permission that whatever our truth is in this moment is OKAY. It also means to shine bright, not dim our light and not apologize if our truth is different than what someone else wants it to be.
Tip #2 – Just Say No
Just Say No is like Speak Your Truth’s cousin and involves a very similar process of being aware of your needs and speaking up. I am sure as parents we can all relate to being asked to do things, pay attention to things, help with things, participate in things, organize things, engage in things .. the list is endless!
In my experience my “go to” response when a YES or NO request is posed to me is to say YES. I rarely think before I respond and often find myself in situations where I said YES to committing to something that I would much rather say NO to. Sometimes I don’t even realize I would say NO, but if I dig deeper, I know me saying YES is out of guilt or wanting to feel loved, wanted, appreciated and / or needed. Shifting this habit encourages my energy to create the space in my life for higher vibrational activities to enter in. Saying NO to the things that do not serve my intrinsic purpose will create space for more things that are in alignment with my being and purpose.
Tip #3 – Release The Guilt
What parent isn’t familiar with the feeling of guilt? I feel like the majority of my life has been a response to guilt whether it’s working hard in school, following the rules, using good manners and behaving well. I feel like if I don’t act expected ways in every scenario, then bad things will result.
I also have a crushing personality trait in which I feel like everyone else’s needs are greater than mine. Motherhood exacerbated this already deeply ingrained character flaw. I learned that being a mother meant to be in constant sacrifice. I also know now that releasing the guilt is going to open amazing pathways to abundance and joy. It’s not an easy process but practice will build up this muscle and it will become easier. We will experience freedom and liberation when we do this.
Tip #4 – Receive Help
Tip #4 is Receive Help. This is a big challenge for me. I admire everyone who allows themselves to receive help. Receiving help from others has been one of the biggest lessons for me as a mother. I never want to be seen as a taker or as someone who can’t figure out life on their own. Learning to receive help and acknowledging that I am not being selfish or greedy when doing so is a daily practice for me.
Tip #5 – Let Go of Expectations
To Let Go of Expectations is to lean into situations where you have to release your ideas for how you want things to live and be. It’s an important spiritual practice of leaning into the flow of life and letting the universe take over. It really has nothing to do with us; things are going to happen as they do. It is up to us to decide how we are going to respond.
Tip #6 – Get Comfortable with Being Uncomfortable
The next tip is to Get Comfortable with Being Uncomfortable. This is one of the biggest challenges I’ve had to face as a parent to a different kind of child– being uncomfortable and learning to stay in this discomfort. We do everything we can to avoid discomfort. I know when it comes to raising my child, my experience has largely been one where I am intervening, avoiding situations, apologizing profusely to strangers and overcompensating for lack. Leaning into the discomfort will help us evolve and grow.
Tip #7 – Find Your Joy
There isn’t an order to practicing these seven tips, but Find Your Joy is certainly my favorite one. I almost didn’t include it because I thought it was a given as a spiritual practice. But just as self-care is considered indulgent, finding joy might not be seen as necessary or important. We bow down to sacrifice and hard work and suffering and sleepless nights. Finding your joy can be viewed by others as a hobby, when in fact, it is integral to balancing out life so that you can be more productive and creative and flowing in your life calling. I am grateful that I have found a life calling that brings me so much joy.
At the end of the day, we are seeking joyful lives, and the quickest and easiest way to tap into this portal of unlimited JOY is to be ourselves: speaking up, saying no, releasing guilt, receiving help, being comfortable with uncomfortable things and more. We are going to create space for more goodness in our lives (more than what we could have ever imagined) by just BEING OURSELVES. It is a simple concept and sounds easy but requires consistent practice. We have been wired to respond and behave differently by society and family generations before us – to be and do what is socially accepted and revered. This is sometimes but often times not always, compatible with who we really are and more importantly, how we really want to be. Our purpose needs to include the full expression of our true selves. I’m honored to be by your side in this practice!
Self-care is a life-long practice for me. I am grateful to share the tips that have helped me on this journey. For specific steps in practicing each tip, please download a PDF of my handbook (for free!), here: https://www.susannapeacelovell.com/. Or feel free to email me directly for access: email@example.com. Honored to be on this journey with you all, my dearest community!
written by Izzie Duval
When our sweet 4 pound baby girl came home from the NICU in September 2018, we broke the news to all of our friends, family and church that per our pediatrician’s recommendations, we would be entering a six month quarantine to protect our sweet Dallas’ lungs from viruses, we were generally met with a somewhat perplexed response...
Most people had no idea what we were talking about, much less any idea why we would do such a thing, but we took it in stride.
My previously social husband and I said “no” to all visitors, met grandparents at the door with hand sanitizer, and asked gracious church members not to expect a visit when dropping off meals for us. I got a big red sign that said “STOP I am a premie!” for the carseat and learned how to do a not so subtle “side step” away from the so-called Karens of the world whose hands reached for those of my precious girl’s while on walks. Mama Bear vibes strong from the get-go.
At first, quarantine was….nice! Our life had been nonstop as long as we could remember, and being home with our baby was peaceful - sleepless, but still and calm. I Facetimed friends and saw my parents when there was not a sniffle to be found. We breezed through the holidays, watching Christmas movies, doing cute little Instagram updates and generally enjoying the coziness of being a new little family.
Then January came.
Despite all of our best efforts, sweet Dallas caught RSV and we ended up back in the hospital. She was extremely sick. On day 5 of the virus, while my husband ran home to take the dogs out, Dallas’ O2 sats plummeted, codes were called and I found myself uttering the only words I could think of - “Jesus, help her!” while medical teams rushed around me reviving my tiny girl. We had already nearly lost her in the NICU, I couldn’t go through this again...but I did. And she made it, again. Having crossed the PICU off our list of *fun* vacation spots, we settled even more into the quarantine, with a gut instinct that this decision was inexplicably life-saving for our baby girl. Many thought we were nuts! Most misunderstood. But we knew it was temporary - or so we thought.
That winter I learned a lot of ways to keep my mind busy, a true act of self care for my anxiety disorder and undealt-with PTSD. I listened to every podcast I could find about the NICU and motherhood. I dove headfirst into a wild TED Total Elimination Diet to help my baby’s food intolerances. I watched every episode of Call the Midwife and relished in my evening glass of wine. Stuck in isolation, I can’t say my mental health was good, but I survived. It’s what us mamas do.
And then...Spring came! And we were free! (Or so we thought.)
We made it through the long winter and despite Dallas’ challenges with RSV, food intolerances, reflux and colic, plus seeing only a handful of humans for 6 months - we were in relatively one piece. I remember the first time I took Dallas into Target with me. Prepared with hand sanitizer, toys, snacks, and water, I carefully situated her in the cart, looked at her sweet little chubby cheeks and said “We made it, baby girl!”
Summer of 2019 was JOY to us in so many ways: friends, pool time, big family gatherings, church, eating out, coffee shops, day trips to the zoo and the aquarium.
But that Fall my girl’s health started to go downhill again....she was sick constantly and strange and scary neurological symptoms had begun to pop up. That December, Dallas was hospitalized again for a week, at first we thought with the flu, but then suddenly everything changed: my one-year-old was getting a CT and neurology was contacted for an emergency appointment...something was seriously wrong. And just like that we were thrust into the medically complex world.
We made the heart-breaking decision to return to quarantine again until Spring.
No more coffee shops, no more church, no more friends, no more Target!
(Can someone say “No more Llama llama drama!?”)
It’s just one more Winter, I said to myself. You can do this.
So we stayed home once more.
This time, though, it was anything but peaceful. We were in the midst of a rare diagnosis process for our 1-year-old, who was having daily migraines and terrifying attacks of seizures, paralysis, and bizarre neurological episodes. Tests were being ordered, specialists referred, therapies beginning and it was HARD. It felt like a pretty strange world when I found myself dressing my toddler in cute party outfits for her specialists appointments because when else would she wear these? I spent most of the second wave of our quarantine learning how to be a caretaker and an advocate, reading research articles I barely understood, joining a thousand Facebook groups and diving headfirst in the beautiful secret that is the special needs community. We kept pushing for a diagnosis. And we kept pushing for April, our light at the end of the tunnel.
Then, one day in March my husband told me to stock up on toilet paper...
And suddenly everyone knew what Quarantine was!
At first I thought it was convenient (and a little funny) that everyone would join us in our last “month” of Quarantine #2. Ohhhh my sweet, sweet little mind, how little I knew...
I’ll spare you the details of the Corona Quarantine in our house because I have a faint notion you may already know what it’s like.
So now, it’s almost 2021 and with the exception of that beautiful Spring in 2019, we have been living in quarantine for well over two years. It’s more normal to us than life outside of our little house at this point. It’s often boring, usually messy, and my husband is nearly always the only one to make it out of pajamas. But as I sit here on my couch in the same sweatpants I’ve been in all week, watching my beautiful 2-year-old next to me work on standing, I thought I would share a few things I’ve picked up along the way. Now, I’m not here to tell you to get dressed and I have no clean diet tips (I’ve drank my weight in wine in 2020 alone). But I have lived in the lonely, seemingly forgotten place of a long-term quarantine for years now, so I would like to share what has helped me stay sane.
Reframe Friendships. Relationships can grow and even begin during a quarantine.
We are so used to in-person friendships that it can feel impossible at first, but it’s a real thing.
Katie. Annie. Rosie.
These are the names of three women I met in 2020, became friends with, and talk to nearly every day now. I have never met Katie in person and Rosie and I have really only seen each other through our porch windows during Starbucks drop-offs for each other.
Find Your People. Join the Facebook group for your child’s diagnosis. Use hashtags to find people in similar situations. Reach out to the mom who you relate to. Just find humans who make you feel less alone! This has been vital to our journey.
Listen to human voices (actual voices) that resonate. Podcasts and audiobooks have been my “friends” when I had no friends to talk to. Hearing other adults talking, and even moreso, talking about things you relate to can help keep your brain busy thinking about positive, productive things (rather than the dumpster fire that is the news or the feelings-a-thon this enneagram 4 loves to bask in on a bad day.)
Get Lost in a Story. My go to is a good YA novel series on audiobook. Sometimes a good series to stream. It gives me something to look forward to and makes doing the dishes a b it less dull.
Trust That it WILL End.
We’re still quarantined now and will be until COVID is well managed in our area.
So whether you’re isolating by choice or by mandate.
Or you’re a mom of a NICU baby staying home for the winter.
Or whether you’re feeling stuck and alone for any other reason.
This too shall end.
And I can assure you, we’ll be right here.
written by Abby Khou
To say this year has been challenging is an understatement. For most of us, it’s been a wild roller coaster of one setback after another. In March, the pandemic happened. We all thought it would last only a few months, if not a few weeks. Yet here we are. There was the political turmoil, the natural disasters, I’m sure it’s still pretty fresh in our memories. I found myself fasting from the news by the time summer came. And then there was the endless zoom calls. Already exhausted special needs mothers like us felt even more that we needed to attend to our children’s needs more closely. Our children had a hard time coping and so did we. Access to services was challenging and mothers had to make the tough decision to do in-person services or telehealth. Some children thrived in the solace of being at home, but for some children, behaviors intensified. Yes, it was a rough year. Special needs parenting added another dimension to it. Yet, here we are.
In a few days, 2020 will be ending. Many will heave a sigh of relief. But for many others, there are still many uncertainties for 2021. We cross our fingers and hope that things will be better. We pray that 2021 is the year that we can finally put COVID-19 behind us and start living again. Go to the movies again. Eat nachos while watching a baseball game. Have our kids go back to school. Go out without the fear that we might be compromising our health. Feel safe again in our environment, that it will not make us or our loved ones sick. Travel again to see loved ones. For some, we just want any small sense of our old normal to be back. We have learned to live in the new normal, but part of us still longs for what we had.
As I look at the many Facebook and Instagram posts of families celebrating Christmas with smiles that were born out of emerging from a year of hardship, I realize there are still many reasons to celebrate this holiday season. Our Christmas gatherings are smaller, but they are more meaningful. In our neighborhood, more houses are lit up with decorations, sending a silent message of hope to those who walk the streets. The warmth of our homes gives refuge from the cold winter. Zoom calls with family members who are miles away give joy. Quarantine has taught us to slow down and think about the things that really matter.
One good thing that we can take out of this is that we have emerged stronger than before. We are thankful for the things that we can do and that we do have. We made it! And we will make it through 2021.
I hope that everyone has a Merry Christmas and a Happy New Year!
written by Carrie Hunsucker
It’s been over five years since we received our diagnosis. We had sought answers for the first 20 months of our daughter’s life. Why did all the genetic tests come back normal, and yet she had increasing developmental delays? Why did she require a g-tube for feedings? After almost two years of seeking answers, we received the results via whole-exome sequencing. Our daughter has an ultra-rare genetic syndrome called Bohring-Opitz Syndrome.
The day we received our diagnosis is a blur. The genetic counselor handed us some printouts of the literature on this ultra-rare disorder, and she mentioned that there were roughly 42 people in the world who’d been diagnosed with this syndrome. She also printed out the website dedicated to support and information about the syndrome and encouraged us to join a Facebook group dedicated to the syndrome.
I remember asking about our daughter’s prognosis, and the geneticist stating that not much was really known. She said that she did know our daughter would always live with us. “Sounds great!”, I thought. I’m not sure if they were purposely vague about her diagnosis to give us time to process, or if I just remember it that way. But reflecting on the days and months after her diagnosis, there are things I wish I’d heard at the time and hope to share these thoughts with other parents who are reconciling with a new diagnosis.
What I Would Tell My Younger Self
If I could take a time machine back to 2015, there are things I would tell my younger self. Lessons that would make the next several years easier, if I took my older self seriously. Thoughts that would help me better manage my expectations, ways to take care of myself for the long road ahead, and ways to seek help during the isolation most special-needs families feel.
I would teach myself the mantra, “It’s a marathon, not a sprint.” I wanted so badly to “fix” my daughter’s challenges that I took off running. We did every therapy we could fit into our schedule. We sought out every alternative treatment available. But in most cases of developmental delays, I assume there is not a quick fix. Slow and steady wins the race.
Part of the “slow” in that equation is taking time to enjoy infancy and early childhood. Take a moment each day to simply be with your child. First and foremost, be a mother. Enjoy cuddling, reading books, and going for walks. Sit outdoors and just breathe for a few moments. Feel connected to your child and to your body. Imagine the energy and the environment you are projecting and creating for your child. The strength and love you are emanating are more vital than your expected outcome of an activity, therapy session, or family outing.
The “steady” part of the race is realizing that there will most likely be years of therapy. It’s OK to take a day off to enjoy a special event with your child or miss a week of therapies to take a family vacation. Therapy will always be there, but your child will grow too quickly!
I don’t think my younger self had heard of “self-care,” as it wasn’t a buzz word at the time. And while many parents may roll their eyes at the perception of self-care as getting pedicures or taking bubble baths, there’s so much more to it than that. Self-care literally means taking care of yourself. If you don’t maintain your physical and mental health the way you’d care for others in your family, you can’t finish this marathon. So, I’d tell my younger self to focus on myself a lot more.
For me, taking care of myself means scheduling time for myself each day. And I mean actually writing breaks on the calendar or scheduling one morning a week to do something that I’m interested in, like going to the art museum or reading a good book. Personal time and your health need to take a priority as much as your child’s doctor’s appointments and therapies. Taking care of yourself also means carving out at least 15-30 minutes of that precious babysitting time to do what fills you up. It means caring for your physical needs first so that you can begin to focus on your emotional, mental, and spiritual needs. Put your own oxygen mask on before assisting others. Sleep, eat regular healthy meals, meditate, pray, journal, or do what brings you joy. If your brain short circuits whenever you get 15 minutes to yourself, check out the Self-Care Wheel or Self-Care Assessment here for ideas.
Finally, I’d tell my younger self to ask for help more often, and earlier, than I did. For me, asking for help meant finally finding a good therapist. I struggle with anxiety and depression, and I eventually found a great therapist who has given me tools that help me with this battle. Finding help might mean seeking out a good support group. I’d suggest finding one active, positive Facebook group and sticking to that. Avoid joining every Facebook group imaginable. Spend equal time talking to other parents with kids of varying diagnoses, rather than sticking to your exclusive diagnosis. I’ve found a lot of support in my local special needs groups, where we address our common challenges and share information about regional resources. I also feel that finding a local support group that offers live conversations is much better than spending time on social media. I’d suggest limiting time on social media as much as possible! I find it lends itself too much to comparison, mom guilt, and isn’t a healthy way to feed your soul. If you need help finding live support groups in your area, check out We Are Brave Together or ask your pediatrician, social worker, specialists, or other resource providers.
Asking for help also means seeking respite. For many families, it’s hard to find. I hope you have a good support network near you. If you do, and help is offered, take it! Remember, this is a marathon. Ask your spouse or partner for a break. If a neighbor offers to help out, say yes! Ask your pediatrician, insurance caseworker, or social worker if respite or personal care services are available. Seek out respite services from local churches or nonprofits. If you’re still struggling to find help, ask other local moms how they are getting a break. Don’t give up on seeking assistance -- it’s a necessary part of this race.
Finally, seeking help also means trusting your intuition. Learn to trust your gut. When something doesn’t sit right, speak up. I was raised to be very polite and respect authority figures, but I’ve learned to be a better squeaky wheel when our family needs the grease. When we didn’t like one specialist, we found another. When we didn’t like the side effects of a new medication, we called the neurologist on the weekend. When we feel like we’re burning out, we take a day off from therapies. Listen to your gut, and listen to your body. Check in with yourself from time to time. You know yourself and your child better than anyone, especially a doctor who has spent less than 15 minutes with your child. Journaling is especially good for listening to your intuition!
Every parent is as unique as their child, and everyone’s story is different. This advice comes from my personal journey, and the lessons I would offer my younger self may or may not resonate with your experience. But I strongly feel that most parents who are new to a diagnosis need to hear these messages over and over again:
It’s a marathon, not a sprint. Marathons are hard and require stamina. You’ve got to see things for the long-term haul that they are, and plan accordingly. There are no quick fixes, and you’ve got to conserve your strength, energy, and endurance.
Take care of yourself. You need to be healthy, rested and mentally fortified to go the long distance.
Ask for help. Make sure your spouse, family, and support network know when you need help. It’s OK to ask for help. Life is hard, and you don’t have to do this all on your own. It’s not all up to you!
If you’re struggling, remember you are not alone. There are many other mothers around the world who are sitting in their living rooms, or standing in their kitchens, running this same race. Reach out. We are here for you, and we understand the struggle!
Carrie Hunsucker is a librarian, a pilot’s wife, and mother to an amazing little girl. She lives near Orlando and facilitates the WABT Support Group for Florida. She also blogs and creates lesson plans for exceptional kids at www.ourexceptionaltribe.com. Carrie can be reached at firstname.lastname@example.org.
written by Sarah Swindell
Has someone ever asked you a question that stops you in your tracks? Well, that happened last year at a book signing for my new memoir, Rounding Home, that had just been published. It was during a Q & A at a bookstore, and let me tell you that simple question hit me dead square in my heart.
While this question would not even come close to affecting most parents as it did me, and would quickly be answered without thinking twice about it, it brought me to tears. Full-blown tears in front of a group of strangers all staring at me with a look of confusion, and maybe a bit of awkwardness as to why I suddenly had silent tears rolling down my face.
A friendly, gentle-looking man with a Santa-like beard in the audience had stood up and asked that simple question that rocked me.
“We have heard and read about how Dawson has impacted you and your family negatively. What is something wonderful about him, or maybe your favorite thing about him that brings you joy?"
I looked into the kind eyes of this total stranger standing out there in the audience and felt a massive lump well up in my throat trying to shove down the audible sob that was trying to fight its way out. I also felt the sudden surge of so many feelings at once. I felt shame, gratitude, joy, and sadness as I glanced over at my husband sitting next to me on stage as I tried to think of how to respond.
The man was right. I spent so much time talking about how difficult life had become after the autism diagnosis and the pain it caused us, it sounded like all that Dawson had brought to our lives was misery. How would one of my typical children feel if they heard me talking about how much pain and suffering they had unwillingly created in our life?
Enter pure and utter shame stage right.
That shame suddenly turned into an overwhelming feeling of gratitude and joy that this man wanted to know something good about Dawson. All I could manage to say through the tears and the gigantic lump was, "Thank you so much for asking that."
I took a deep breath and went on to list all the beautiful things about Dawson and soon realized there were a lot of them. The list forming in my head kept getting longer and longer with each thing I said.
How patient he has made us all. How Dawson made his sisters into the most loving, caring human beings on the planet that will no doubt fight over who gets to care for him after we are gone. How just seeing him smile can make a bad day feel good again. How despite never being able to say a single word, he shows love in only a way that we understand. The list went on and on until I landed on the last one.
It was the people who are in our lives because of him. Some of the most incredible people on the planet we never would have met otherwise. People that dreamed big for our son and that wanted him to succeed even in the smallest ways. People that put our family in their thoughts and prayers when they went to sleep. People that never gave up on helping him be the best he can be and cheered him on through the darkest days. People that let me cry on their shoulders... sometimes uncontrollably.
I have always known Dawson has made everyone in our family better people, but he also brings so much joy into so many other people’s lives as well. That question forced me to realize it in an instant.
There is no doubt that raising a severely autistic child is probably the hardest thing my husband and I will ever have to do in our lifetime, and I would not wish that situation on any family. I can say that without feeling guilty because it is 100% true.
Watching your child struggle with so many things day after day can be gut-wrenching at times. Knowing that he will need life long care and the burden that might cause for our daughters after we are gone. Fear for his safety and wellbeing or being mistreated by a caregiver.
Not having a voice to express his thoughts and feelings is the cruelest thing of all and by far the most painful part. Knowing he will forever be trapped in the world of autism and at nineteen-years-old, hope for a miracle of complete recovery has long since passed.
But Dawson is more, so much more, than a sad story of what having a child with autism is like.
That simple question changed everything about how my future discussions went on from that day forward. He did not ask to have autism and would never intentionally hurt anyone or want to be the cause of anyone's unhappiness, least of all to his family that loves him. We love him more than he loves french fries.
I think it is easy for all of us to dwell on a bad situation or life event. Maybe on that one nasty comment or judgment from other parents. But if you start to think about the beautiful things that are all around you hiding in plain sight, you will quickly notice how long that list suddenly becomes. A long list that comes from one simple question we all need to be asked more often.