Sarina’s world was brutally rocked out of shape when the wildfires broke out on our hill.
Just like ours.
The “only” difference? Sarina lives with the Autism Spectrum Disorder.
She deals with challenges differently.
Her emotions can lock her up inside her own world. Her interaction with others is often challenged. How could she deal with a life-threatening event like this?
It was this picture, this grief she showed but couldn’t express, that kept pushing me to write about this experience. In order to help her, I needed her to open up and be able to talk about what’s hunting her. It was the enormity of this immensely difficult time that the story grew big and bigger. I divided it into three parts.
Part one is here.
If you are reading this and are caught under the impression that autistic people don’t feel emotions, let me help you understand why this is wrong. It’s my deepest hope to shine a light on the way how my daughter lives her life and how deeply she feels. I burn to learn everything I can about Sarina as much as I burn to heighten the awareness of people who cross her path on how to be with her. Any small act of kindness, or guidance and making her feel included means the world to her.
Sarina is highly sensitive, compassionate and vulnerable. Time has a different meaning to her. She processes things very slow, she cannot be rushed. Her actions get very chaotic when under pressure or when she tries to be fast. A threatening reality when faced with a burning hill behind you.
Sarina was born in Cincinnati, Ohio at 24 weeks. Weighing 1’15”, she did spend the first 6 months of her life in the NICU trying to survive. Her differences stem from this early birth. There is really not one label that fits her. Autism Spectrum next to Sensory Processing Disorder is just one part of who she is.
At our home, we frequently say:
“Think outside. No box needed.”
That’s really what it takes to understand each other. Not just the people who are different.
Sarina is part of the high functioning population who is very capable but cannot live alone. She speaks two languages fluently. She is intelligent and hungry for knowledge. Since 3 months she is enrolled in a special college track at Santa Rosa Junior College. Planning for a career in Social Justice. The college has become her sanctuary. Finally, a place where she is seen and challenged. It’s the eye level relationship that people like Sarina crave. The college does an amazing job offering just that.
But she is also very distractable and absentminded. Following directions is hard for her – for many reasons. Not processing the spoken word like we do is just one of them. Words or sentences spoken to fast get lost. Having a mind that cannot concentrate and constantly bombards you with a library worth of information doesn’t help the process of paying attention to what’s in front of you.
She has a big zest for life. She wants what we all want: She yearns to belong, have a partner, have friends and a meaningful career.
But she needs someone who helps her hold it all together. Daily life is challenging when your drum has a different beat than most people around you.
Right now and for the last eight months I have been holding that space. Supporting her growth, helping her along. Before, she lived in a supported living arrangement in Germany for a couple of years. Yet the lack of academic possibilities made us search for another solution back in the U.S. were she has lived most of her life.
When we learned about this special college program we moved to Santa Rosa, California and she moved back in with us. It was meant to be a temporary hop back into the nest. A new supported living program was also planned to open here. Sadly we just learned that it did not get licensed. We lost that opportunity.
My nest will be full for a while longer. A demanding job for me and my husband and a challenge for Sarina as well.
I believe that there is a bigger plan.
I know I’m made for this. When the challenges become all-consuming, like when dealing with the extra fear of losing our home, I remember: I will not let my crown slip. I will not break by this challenge. There is more for me to learn. There must be a bigger plan. When I am close to falling down I pick myself up again. It happens that the never-ending need my daughter has become too heavy to carry. I have to go back to my tools. When I remember to pause, remember to breathe and tap into my source I gain strength and support because I am not doing this alone.
I do this for myself. I do it for my daughter. I do it for every mother, every parent raising a special child. And in terms for everyone who deals with extraordinary challenges. My tools can be yours. We special moms are not meant to break. We are meant to hold the torch out in front of our children to lighten their path and at the same time igniting our own light. We are meant to brighten the sky with all the stars that have been denied by society to right to shine. Can you imagine how bright the sky can be if we help our children star to shine?
I can. I see it every day.
It’s my mission to gather all the tools I use to help me keep my dream alive and carry my crown high while supporting Sarina to live up to hers.
Sarina teaches me to not get stuck in assumptions: there is not one correct way to show our feelings. Emotions and how we live with them come in many shapes. It takes a willingness to be fresh, to drop our expectations and become super curious about who is in front of us. I am learning this every single day.
Sarina feels deeply. But her communication of what she feels is often either off or on. “Off” is the harder one to deal with. What to do when I can’t reach her? “On” happens when she tends to be obsessed with something. But she can be guided out of the “on” phase a bit easier.
People on the spectrum often feel more intense then we do. Often hidden from our view. Especially when Sarina withdraws behind a veil of silence for no apparent reason it’s patience and surrender that keep us afloat. It’s that place we as Neuro Typicals (NT) cannot go. When I run because we are late she might be sitting in self-talk not able to move.
“I have to sort out what’s happening on my own terms first”, is how Sarina explains this. “I cannot respond to you, my neurons don’t understand. It’s when I am on overload when it’s too loud, too busy, too much everything that I need to give myself a break”.
It’s not natural for her to share her feelings the way its second nature for most of us. We all know someone who “ticks” a little different. I choose to be an open book. I am gifted with a strong sense of connection and sharing with others. I am committed to speak and live by my truth. What if this is not a concept you understand?
Sarina get’s caught in her own inner-world experience. In times of crisis or challenges, this has been the biggest struggle of living with her. When she is withdrawn her ability to follow through with what needs to be done is jeopardized. Discernment is not a skill she has. She can get hooked on a task and cannot stop. She cannot handle being interrupted well. Even if she wants to be adaptable her brain is wired differently. From wanting something to putting it into action she needs to walk through a labyrinth first.
Living with Sarina requires time. Time to ask questions. To listen. To explain. It requires immense patience. And most of all big love governed by an open mind to help her put into words what she feels. Or filter out what others don’t need to know. TMI (too much information) can be our daily bread. And on the other ends sits NEI (not enough information), equality daunting.
It requires the trust and faith that I’m not doing it all alone. Life might not flow the way we have envisioned it but I now know there is divine timing that supports us. We are meant to fulfill our lives plan but we have to be able to step back, again and again, to surrender to the flow. To pause and breathe. And breathe again. The flow of the breath is our lifeline. Whenever we stop and harden our hearts we cut ourselves off that flow. I know how that feels.
My biggest spiritual lesson?
We need to step out of our storyline.
Pause and listen to the whispers of truth that already reside in our hearts. We cannot hear them when we carry an armor of resistance around with us.
For the last 27 years, I have observed my daughter. It’s a daily practice trying to understand how she feels and how life looks from her perspective. I have learned everything I know about her in the magic moments of being truly present to her. In the stillness and gentleness of the p a u s e. I feel lucky. Lucky I have learned the gift of being a listener.
I am an observer by trade. It’s the gift of practicing and teaching yoga that helps me to channel my daughter’s hidden world out into the open so she too can belong. It’s a big hurt for a parent of a special child to feel their loneliness. Not being understood. Not to belong.
I have learned, that we as the parents are not enough. We are in desperate need to create the famous “it takes a village” for her. Especially since Sarina is an only child, our blood family is on the other side of the ocean and we are new to this town. I am on my way to create this village for her and for us.
Understanding my daughter continues to challenge me to drop labels. There is no such thing for her. She guides the way on being open to everything that appears on our path.
And there is immense grace needed that I do forgive myself when I fail. My daughter holds everything for me. She is my biggest teacher and my biggest challenge. No one can trigger me like her. I am a temperamental being, by nature fast and wild. When I lose it with her it breaks my heart. It’s her who in those moments can reach out to me saying: “Mschen*, it’s o.k. I do understand.”
*Sarina created the name “Mschen” for me.
That’s magic right in front of me.
My daily yoga and mindfulness practice moves my self-reflection and self-love off the mat and into my daily life. It’s a lifesaver for me. Spending enough time in nature especially by visiting and hugging my trees fills me up. It grounds and uplifts me. I know this is my path. My body, my soul, my spirit are all in awe when I dive into the beauty around me.
The power of those trees was also present and supported me when the devastation my neighbors and my city had to endure by those fires was nacked right in front of me.
In my yoga world, it is the “I bend so I don’t break” that stands true for me. It’s not just a flexibility of the body, by far not. It is the flexibility in our minds that help us to stand up after the fall.
I am on a lifelong quest to understand how Sarina experiences the world. The question: “If you had one day in your life to be someone else, who would you like to be?”, I can answer on the spot.
“I would love to live in my daughter’s body.”
I wish every day I could feel her feelings, the hidden ones in particular. Does she feel her feet on the ground? “Of course”, she says when I ask her. But observing her on the yoga mat gives me a different answer. Standing on one foot is impossible without support, standing on both still looks like she is on shaky ground. She absolutely fits the image of “she has her head in the clouds.
We love to quote Rumi:
“Your head is the ladder; bring your head down under your feet”.
The experience of the two weeks after the fire broke out when we were evacuated and fear was bigger than life humbled me. When I wasn’t able to be the bridge for Sarina. I was on foreign terrain with myself, lost in fear and despair. Not being able to help her consumed my nights.
The hugs when we cried together without the answers to her fears helped us to build our bridge together and move through our despair to the other side.
Look here for part two coming up next!