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: firstname.lastname@example.org. 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 email@example.com.
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.
Written by Jessica Patay, Founder/Executive Director, We Are Brave Together
Do you see us?
We are the parents who have always parented in an altered universe, and now we are being asked to live in yet another altered universe with no end in sight.
Do you see us?
We are the parents whose children highly depend on structure and routine to feel secure and safe and less anxious.
We are the ones who need a multitude of people to support our child’s ability to learn, to play, to speak, to toilet, to eat, to walk, and to participate in the school day.
We are the ones who have NOT been trained in special education, occupational therapy, physical therapy, feeding therapy, sensory therapy, equine therapy, speech therapy, art therapy, and music therapy. Nor do we have degrees in behavior modification or applied behavior analysis.
Do you see us?
We are the parents who rely on others to help keep our children stable, secure and safe; not running away, or harming themselves or others.
We are the ones who rely on specialists to teach our children how to talk, behave, how to be in community with others, how to take turns and play appropriately.
Do you see us?
We are the ones whose children have been made to feel as if they are not a priority in our school systems, state systems, and in our culture and society.
We are the parents who are not worried about threats to our child’s education because we want them to get into college. This may never be an option. We simply want them to be happy, learning, growing, and around patient and compassionate peers.
We are the parents who watch the neurotypical children in the family suffer because of the overwhelming needs of their siblings with disabilities, as 24/7 life at home is suffocating and exhausting.
Do you see us?
We are the ones who make 100 decisions every day. Because our children cannot.
We are the ones whose children will not grow up and move away and live fully independent lives. Ever.
We are the ones who are desperate for breaks from caregiving. Desperate.
Do you see us?
written by Susanna Peace Lovell
It’s funny how the universe works. You think you’ve finally mastered the spiritual practice of knowing (like, really knowing) that you are worthy and enough, exactly as you are. You’ve invested in myriad forms of healing and self-care: meditation, yoga, reiki, crystal work, body and breath sequences, sound bowls, mirror work, daily morning prayer rituals, intensive spiritual counseling, traditional therapy and more. You spend hours journaling about your feelings and insights. You participate in workshops and retreats on how to become your best self. The amount of self-help and spiritual wellness books on your shelf are enviable. You’ve subscribed to the Oprah magazine since its first season. YOU’VE GOT THIS.
And then. Then you become a mother! You’re prepared for this day, as it’s the biggest dream you’ve had for yourself since you were a little girl. You have lots of siblings and tons of practice. Kids have always naturally gravitated to your nurturing energy and you have a lovely babysitting side hustle as a teen. You know you’ll be the best mom with the most amazingly well-behaved little mini me – in fact, you’ll have a version of your very best self on your very best day! You can’t wait to feel the impact of your amazing parenthood as your child shines while you nod your head proudly in her direction. You can’t wait to pat yourself on the back for creating this angel. YOU’VE GOT THIS.
Well. Adjusting to new motherhood is a little more challenging than you thought. Baby Arizona cries. And cries. All day, every day, her piercing cries filled every lonely moment. A nagging feeling starts to creep in as the months crawl by. “Maybe it isn’t just colic?” you think out loud to yourself. Surely things will change soon. The pediatrician says so.
Sleepless nights become more prevalent for you, even as Arizona learns how to sleep through the night. You’re puzzled by heightened anxiety that won’t allow your mind to settle. “What’s wrong with me?” you think. “Isn’t this what I’ve always wanted?”
What you come to realize in these early days is that, YES, motherhood is absolutely what you always wanted, but you also recognize your desire is for it to look and feel a very specific way. Your vision is shattered by this unexpected child. Your days became consumed with specialists that can help unlock the mysteries surrounding gastrointestinal issues, severe food allergies, asthmatic episodes and intense skin reactions. Most importantly, you find yourself spiraling into the debilitating abyss of post-partum depression hell. You are drowning, but don’t mind the thought of being swept away into the deep, dark sea – far away from this unkind motherhood.
Yet and still, you somehow keep moving forward. Arizona’s medical issues remain, but slowly, ever so slowly, you come to understand that you have a different kind of child. She just needs attention in a way that you didn’t plan for.
“It will be okay,” you tell yourself, “I can handle allergies and asthma.”
Due to all of the aforementioned health crises, experts note that your child’s inability to connect with the outside world (a new and growing concern) is absolutely due to her specific medical issues. “Don’t worry,” they all say, “Your child is developing normally, and just needs to catch up.”
Except the experts aren’t right. And just as the fog begins to lift on how to manage everything else, you get a call from your sister. “Something’s different about Arizona,” she says. You feel an immediate punch to your gut. You know she is right.
The next year brings out your warrior side. You focus on fixing this child, by any means necessary. You cart her from developmental pediatrician and neuro-psychologist visits to assessments of all kinds. A flurry of therapists become your second family. Sometimes you hear words of hope, but what sticks with you most are the words and descriptors about what your child will / can never do, and who she will / can never become.
These words resonate with your own childhood feelings of inadequacy, unworthiness, and imperfection. You were a girl who tried so hard to be loved by everyone, but continued to be met with rejection. You changed your behavior and outward appearance, away from your true self, to feel accepted and included. You swore to yourself that you would one day fit in and be admired by all. And you also made a promise to yourself that you would raise your children to also: fit in, exercise exquisite manners, present as perfect little humans to everyone around them. You had a specific mission and failure wasn’t an option.
Year Three – Year 5
The “A” diagnoses start piling in. On top of the ever present and dominating allergies, you learn that you also have a child inflicted with Asthma, Auditory processing disorder, Atypical development disorder, Autism spectrum disorder, Attention deficit hyperactivity disorder, and last but not least, Anxiety disorder.
The access to joy in your life? Gone for a long time now. Perhaps gone forever. “Sacrifice” becomes your daily mantra. What’s best for Arizona will just have to be good enough for you. Trudging forward, in the most epic storm of your life, you surrender to the notion that your dreams no longer count.
Year 6 and beyond
And then, a diamond in the rough presents itself. Fate intervenes as you stumble upon one of the biggest miracles of your life: a small and cozy therapeutic school that heals the child by treating the entire family. You are finally able to unleash your pent up sadness as tears gush freely down your face, fiercely and daily. You began to learn a new way to be with your child. Simply, to just be with your child. You learn an emotional language to help support your child, but soon realize, you are on a parallel learning journey with her. The words you learn to lean into communication with your daughter are words you also learn to use on yourself.
You begin to understand what spiritual teachers and wisdom leaders mean when they say, “Everything will be okay, because everything is okay.” It finally starts to click, that all of the years of trying to fix your child are not going to make things okay. No, things are finally okay when you realize that your child is okay. Exactly as she is, a perfectly intact soul, brought into this beautiful world to share her full unique expression and truth. All of the facades you create about yourself, to present yourself a certain way to the world, are fading away because of your child. Unfiltered and raw, truth serum flowing 24/7 – this is the child that chose you, to be her mother. This is the child who becomes your biggest teacher.
You’re here now, with a teenager in the midst of a pandemic. Life has turned upside down within the past 6 months. There are glimpses of normalcy, but life as you know it is over. Perhaps it’s a temporary situation, but you don’t want to sit around aimlessly, waiting for “life” to start back up again.
In the hardest moments, you find gratitude for all of the learnings Arizona has bestowed upon you. In your weakest hour, your child reminds you that she is a beacon of light, exactly as she is. You acknowledge yourself for creating a safety bubble of love and understanding around a child who has the tools and permission to express herself without an ounce of editing.
It is when you finally lean into the understanding that your child is not broken (and therefore doesn’t need to be fixed), that you find this truth for yourself, also. You have a child who is WHOLE, COMPLETE and PERFECT. She is worthy simply because she was born. She came into this world exactly as she was meant to. You are entrusted to be this child’s caregiver and guide in this one life. You learn to fall in love with your child, exactly as she is.
An awakening, beyond crystals and rituals and magic, has found its way into your being. You’ve had access to this healing your entire life yet it is only activated through your journey of accepting and loving your child, unconditionally. You make a choice to start the deeper and on-going work of also loving yourself, equally and enthusiastically, without conditions. You realize that you are also WHOLE, COMPLETE and PERFECT.
You are grateful for this and so much more. You vow to lean into continue loving yourself more deeply and thoroughly, spreading to all the nooks and crannies of your fragile and delicate spirit, soul, and body. You let love flow through the neglected crevices of your entire being. You wake up with purpose and connection.
And you finally find yourself tapping into the exquisite and never ending supply of JOY. You exhale. Everything is absolutely okay.
Susanna Peace Lovell is a life coach and advocate dedicated to the health and wellness of special needs families, specifically. She is also the mother of a teenage daughter with autism spectrum disorder, ADHD, anxiety and more. It is her life’s calling to help special needs families find joy and balance in their own lives. It is one thing for us to support and honor our children with special needs, but it is equally important for us to honor our own calling and purpose in this lifetime. When we thrive, our families thrive! Yes, even during a pandemic!
Once upon a time, there was a little baby girl who was born 17 years ago. The beauty in her pure innocence took her mom’s breath away. She was perfect. Her mom knew that coming home from the hospital (without that instruction book) would bring some fears of raising a firstborn, but, with lots of family support, she knew that it could be done. This child was an angel; she met her milestones, was a happy baby, playful and engaging.
As the little girl grew, her family began to crack open. By two and a half, her daddy was in his addiction and her mom was just trying to survive and “could not do it anymore.” Because of this, they left and her daddy went to treatment for some help. Over the next few years, Mommy and Daddy worked hard to put their marriage back together again, like Humpty Dumpty. When this little girl hit grade school, she was having some trouble. She could not concentrate, she was having a hard time making friends and the onset of anxiety had come into play.
On the day of her 12th birthday, her grandmother died of addiction. The little girl loved her grandmother and felt very close to her. Mom could never make sense of it because her relationship with her mother had been so toxic and painful and was now so severed and broken. But, the closeness was real and the little girl was devastated. After her grandmother’s death, this preteen was showered with gifts and anything that would make her happy. She was not allowed to grieve properly , because her mom didn’t know how to grieve either. And stuffed-down grief is not resolved grief. Stuffed grief will make you sick, and eventually rise to the surface sooner or later to be healed.
By junior high, the signs started to show: the signs of mental illness. The binging, picking, isolation, suicidal ideation, increased anxiety and bouts of depression. As she finished the end of ninth grade, she had been to treatment twice and was hopefully headed down a different road...a road of healing and recovery. By this point, her mom had recognized that her own unresolved childhood trauma had put her life in just as much jeopardy as her daughter’s. She had been living in chaos since the day that she was born, enmeshed with her daughter and could not find peace within herself. A childhood of appeasing others to stay safe caused her to constantly look to others for validation and purpose. The time had come to find herself and begin her own healing journey alongside her daughter.
Last summer, the 16-year-old young woman advocated for herself and asked to go to boarding school. The public school system just wasn’t a fit and the private school was not what she needed either. So, her mom called an educational consultant and they set out to visit four schools up north. Having lived in the South, they knew this would be quite the transition! She picked the last school on her mom’s list. But, her mom trusted her daughter and wanted her to take ownership in her decision. The school year went great! She made friends, experienced joy, struggled and matured. On March 9th, she came home for what was thought to be a two-week spring break. It could not have been predicted that spring break would continue on until she completed her junior year online. Unknown is never easy.
Her senior year was still up in the air until just a few days ago. Her family had been back and forth of what the right decision is to ensure their daughter’s safety (physically and emotionally). The anxiety of making this decision had affected the entire family.
There is still so much uncertainty in the world right now and the feeling of wanting to be in control seems to be so far out of reach. At the end of the day, all we can believe is that the trust is there and that “whatever happens is what is supposed to happen” and that they will be prepared.
OUR journey is far from over and we do not know what the future holds for any of us. As I wrote this life story about my daughter, I realize that she did not ask to be diagnosed with mental illness. She did not choose this life, but it is hers. I did not ask for mine either, but it is mine. We both have experienced some immense pain and neither of us have asked for that either. Her behaviors were telling signs that something was wrong, that she was in pain and that she needed help, but didn’t know how to ask for it. She was never a “bad kid”; she was just a kid who was hurting and I didn’t know how to read the signs.
What do I know to be true? This 17-year-old daughter of mine makes me laugh every day. She can simultaneously warm my heart and drive me crazy with teenager sass! But now I know that she gets to be who she is meant to be. And I am working on who I am meant to be in my own authentic way.
As we continue to work on this, it definitely feels a little messy right now, messier than usual. We are all navigating unfamiliar territory right now and it is extremely difficult. We are doing the best we can to advocate for our kids. Some of us don’t have the choices to make, and, for some, the choices are being made for us. My daughter’s anxiety is on the rise with all of the restrictions and altered class schedules that are being put in place at her school due to COVID. My daughter (as most of our kids do) needs structure and socialization with peers. Every time we think the decision has been made, the schools create another shift. She struggles with change. It is hard for her. As her mom, I have learned to sit with her, validate her feelings and then help her with the tools to bring that anxiety down. The most healing part for me is to be able to sit with my own discomfort and anxiety. Because if I cannot sit with my own, I cannot sit with hers.
Whether your “messiness” comes from your own childhood or being a parent right now or a combination of both (like me), it is so important that we find someone to hold us in our messiness. There is hope for all of us. We have to dig deep and find the courage to reach out for support when we need it.
If you are a mom of a special needs child or a child that suffers from mental illness, search for that “someone.” That someone is there, available to you. It’s not easy, I know. It’s extremely hard to show some vulnerability and share our stories. But sharing our stories is where the healing and connection begins. And, we all deserve that new beginning.
Joye Madden is a parent coach and consultant dedicated to guiding others on a journey of personal and family growth, insight and healing profound happiness. This dedication stems from her own personal healing story—Joye had to dig into the darkness of her childhood plagued with her parent’s mental health and addiction. These issues followed her into her marriage and family. She courageously embraced the need for therapy, rehab and therapeutic boarding schools as part of her family story. Watching her loved ones and children struggle with mental health disorders only strengthened Joye’s desire to fight against the stigma of mental illness.
Joye’s long and arduous journey led to the discovery of her own light and she is now devoted to walking with clients alone a similar path of healing. Her practice in the field of recovery began at Bradford Health Services, an addiction recovery program. She assisted in their family program, by welcoming the family members and sharing her story. She was the first face they saw, as they entered the doors to become educated on addiction and mental illness. She was always there to greet them with a huge southern smile and a big hug. She then moved on to The Bridge to Recovery, a trauma treatment center, where she sat as an active board member. Before that, she assisted in their family program and their Adult Professional Program. After countless coach trainings, conducting research and learning from mentors, Joye went out on her own to become a true advocate for families struggling with mental illness and addiction. She is now a certified Conscious Parenting Coach (by Dr. Tsbary Shefali), specializing in working with parents or caregivers who have children suffering from mental health challenges.
Joye lives in Birmingham, Alabama. When she is not working with families, you can find her knitting, baking, playing with her pups, and enjoying time with her family!