Archives for the month of: May, 2014

Thirteen years ago, my mother-hero’s journey began. My almost-three-year old’s teacher stopped me at the classroom door. “We’d like to have someone from special ed come in and observe Ellana. She’s not like the other children.” My heart raced. My world whirled. Hours passed and I began to extract meaning from the teacher’s words, concluding that she thought something was wrong with Ellana. I wept. I raged. I decided that Mrs. Francis was wrong. I refused the Call to Adventure. I rejected the labels the teacher and observer wanted to associate with my beautiful, brilliant daughter.

Twelve years ago, I acknowledged that my child was very different from the other preschoolers and accepted the challenge to be the kind of parent (I thought) she needed. I decided to overcome the autism spectrumy thing. I donned my battle gear. I read, researched, and planned. I drove my daughter to therapy appointments and sampled treatments of many flavors. I had a goal: I would help Ellana to modulate odd behaviors and acclimate to the ordinary world. I would fix the glitches in her system. I would make my child normal.

Eleven years ago, when my second child was two, he was evaluated and given an autism diagnosis. While Ellana’s way of being defied labeling, Daniel had never spoken a word. He pressed the buttons on his toys repeatedly. He gleefully stemmed, flicking his hands in front of his face. He was happy, affectionate, intelligent, and obviously autistic.

Nine years ago, my first grader was in her fifth school in five years, when we were asked to withdraw midyear. I plunged into the abyss. Amidst deep, dark despair, I experienced a moment of insight: I would teach my daughter at home.

After five years of homeschooling, after much yelling, crying, and foot stomping from mother and child, revelation dawned: I did not need to fix my daughter or her brothers. They were not, and never had been, broken. None of them resembled the children I had envisioned, but they were perfectly themselves, and I loved them, no changing required.

Four years ago, my three children went to school. For the first time in eleven years, I was home alone during the day, so I decided to write a book. I interviewed mothers of autistic children and wrote about the transformative power of our parenting journeys. I was healed and enlightened. I recognized my children’s inherent awesomeness. Life was easy and good. And we lived happily ever after.

~ The End ~

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Cue the laugh track. While the above is an accurate, though drastically abbreviated, telling of my parenting experience (the whole is told in Swan Mothers: Discovering Our True Selves by Parenting Uniquely Children), and though I did feel as if my mother-hero’s journey had come to a natural conclusion, I relaxed on my (virtual) lounge chair on the beach, margarita in hand, rather briefly. The end was not The End, but a curve in the spiral of life, circling into another loop of The Journey. I had arrived . . . somewhere, yet felt more unmoored than ever.

Mother,
      a small BIG word, 
       gave my life purpose and meaning.

It was I,
         who knew what my children required.
It was I,
         who fed and healed.
It was I,
         who soothed and strengthened.

I was
     needed,
     heeded,
     indispensable.

Until I was not,
             not needed to fix, for they were not broken,
             not heeded, for they invoked their own wisdom,
             not indispensable, for they were competent and complete.

Mother,
      a BIG small role,
      forged the woman I am today.

It is I,
       who practice non-interference.
It is I,
       who aim to advise less and listen more.
It is I,
       who teach and support.

I was
     heated,
      hammered,
        beaten into shape.

Until I became,
               cool and unrestricted, flowing like water,
               expansive and pliable, open to constant change,
               sovereign and free.

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Since I first heard the word autism, 13 years ago, my Awareness has expanded exponentially. My worldview widened, and continues to grow. I evolved, and continue to evolve. Before autism (and my children) expanded my Awareness, I was very certain of what I should do, how people should act, and how the world should be. Because my children didn’t match my image of how children were supposed to be, because I loved them, and because I wanted to be the mother they needed, I softened. I realized the value of being like bamboo, flexible and bending with changing conditions. I recognized the importance of acknowledging when I was wrong. I learned to be different from the mother I’d been expecting to be. Without the gift of autism, I would be shallower, more narrow-minded, and more rigid.

Thirteen years into the journey, I am trying to not try to figure out a new purpose for being, striving to adjust to the flow of life’s currents, and learning to thrive in this uncertain space. I do not remember what I know every day. I relearn lessons I previously mastered. I slip, stumble, and fall. I notice twists, hills, and valleys on own journey honor the journeys of those around me.

The spectrum of people on the planet today is an invitation to see the essence of one another. It is an invitation to look with new eyes and listen with new ears, and to perceive with our hearts or our senses. It is an invitation to expand our perceptions and evolve. It is an opportunity to embrace uniqueness and individuality while recognizing our oneness.

Natalia Erehnah lived her first 29 years in beautiful and secure ordinariness, enjoying a pleasant childhood, school and job success, easy friendships, and a happy marriage. Motherhood landed her in a new land, for each of her children arrived with a clear mission and unique way of being. One was diagnosed with autism. None developed in accordance with timelines or charts. Life as she knew and envisioned it, was over, and the journey of a lifetime had begun. Natalia loves connecting with mothers on-line. 

www.swanmothers.com
Twitter @SwanMothers
Facebook: Request to join the Swan Mothers group
G+ Natalia Erehnah

My husband has just kissed me goodnight, “Don’t stay up late,” he says. I tiptoed across the hallway to peek into my son’s room; he slept heavily with his mouth wide open.   It was 11pm and an array of fabrics, zippers, needles, pin-cushions, yarn and crochet needles flooded our living room table. I had nowhere to rest my cup of tea so I held it tightly and slowly sipped the sweet midnight fuel that sparked the creative engine that allowed me to work on my latest project. I was designing a new purse for my on-line retail shop on Etsy called “MadebyLuella.” Hours later, I pulled the sateen covers over my head and hoped for a restful four-hour sleep, yet deeply aware of the many roles I will play the moment I arise.

Motherhood has been the most important role I’ve undertaken since the birth of my son, Samuel, who is almost eight years-old. Just like other parents, we celebrated his accomplishments. My husband and I reveled when Samuel took his first steps at 2 ¾ years old; we rejoiced when he babbled his first word at age 3 and celebrated when he read his first word at age 4, hit his first tennis ball at age 5, and wrote his full name at age 6.   However, we have also faced unique challenges. Samuel has Down syndrome. When he was 5 months old, he underwent open-heart surgery and since birth has been under the management of numerous medical, special educational and therapeutic services. As the years progressed, I worried incessantly about his health, his academic performance, his social life, and especially his future until one day I had to worry about me.

I was already then in the middle of what I now know was a progressive ailment that affected my balance, energy and mood. Ironically, the day in which I came to a peaceful realization that I had to start listening to my body coalesced at an event called, A Day of Joy in Oct 23, 2011. Special Education therapist and parent empowerment coach, Shane Kulman facilitated this unique day devoted to mothers with special needs children. I had immersed myself completely into Samuel’s life, even neglecting the basic elements of good health such as eating well and exercising. Events from that day, which included movement, musical, dramatic, and art-making activities propelled me to cry out, “Listen to me, there is something amiss!”

Mothers perform their jobs so thoroughly that we neglect our plight and well-being as individuals. A Day of Joy had unleased moments of truth that allowed me to understand that I needed to address my physical, mental and emotional well-being.  It was a long and arduous process, but a year later, November 2012, at the age of 43, I was diagnosed with Parkinson’s disease.

Parkinson’s disease is a neurodegenerative disease that affects movement signified by the lack of dopamine production in the brain. Dopamine is a neurotransmitter that controls motor function. Though there is medication to manage its symptoms, there is no cure. I grieved over this diagnosis in the same way that I grieved over first discovering that Samuel had Down syndrome. The things I worried about for Samuel were things I now worried for myself! I mourned the loss of my idealized future self. How was life going to be with Parkinson’s disease?

I learned early in the diagnosis to find the right doctor and experiment with different kinds of medicine to treat the symptoms associated with the disease such as rigidity of the muscles, lack of balance and the inability to walk properly. In addition, I learned to cultivate a practice of strengthening my body, mind and spirit.   A subset of that work focused on creativity, which involved finding a joyful activity that allowed me to carry peace everywhere I went.

The effects of the medication coupled with a positive attitude proved staggering for my physical, mental and creative pursuits. It was during this time that I re-discovered crocheting and painting. By February 2013, I was making scarves, by March a yoga mat holder, and by April, I crocheted fabric-lined purses. In the meantime, I was also writing my business plan for my project, Luella Adan’s artTalk. Immersed in this flow of creativity I learned to knit and embroider! By October 2013 I had also painted a series of mandalas, round images like flowers with intricate designs used for meditative purposes by monks in Tibet.

I found peace in the process of creation and received great fulfillment in the act of finishing one product. This creative journey was conceived as a means to assuage the effects my diseased self and it has impacted my life in ways I could not have ever imagined.   The hobby of making purses and painting mandalas grew into an obsession, which I turned into a constructive enterprise. In April 7, 2014, I opened my online-shop on Etsy, “MadebyLuella: Carry Peace Everywhere,” in hopes that I may find a home for each of the objects I have created.

Entrepreneur was the last word I would have used to describe myself in the past. The word connotes someone with a keen sense for business and deep knowledge of risks and profits. Recently I have come to understand the word in its original French interpretation, entreprendre – meaning “to undertake.” This definition encompasses what I believe is the key to understanding my role as both mother and entrepreneur.   It means engaging in any novel enterprise whole-heartedly, a process from which we discover and learn something new about our self and others.

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Entrepreneurship addresses the ways in which one undertakes the challenge of running a business but I will go out on a limb and say that we are all entrepreneurs undertaking the most serious business of all, running our lives. As the roles of motherhood and entrepreneurship intersect, I pose this question: How can one create an enterprise that will support, cultivate and encourage another person or entity’s needs while retaining one’s authentic-self intact?

I have always felt the positive impact that creativity has weighed in my life. Tonight, after my husband and my son are both asleep, I will reach out for that cup of tea to keep as my companion amidst the tapestry of notions displayed on my living room table. I will design and create the latest addition to my Etsy shop, and reflect upon the lasting rewards that will come from the fruits of motherhood and entrepreneurship.

This writer’s Bio

Luella Adan is an experienced classroom educator who honors various modes of learning and values meaningful integration of real world and classroom experiences. A passionate museum educator, she launched her own blog in the fall of 2013 called, Luella Adan’s artTalk, an initiative that promotes safes spaces for dialogue about art. http://luellaadan.wordpress.com/ Luella opened her online Etsy shop, “MadebyLuella: Carry Peace Everywhere” this spring 2014. http://www.etsy.com/shop/MadebyLuella?ref=search_shop_redirect   She is a staunch advocate for Down syndrome awareness, and currently co-chairs the Dance for Down Syndrome Fund Raising event which benefits programming at GiGi’s Playhouse, NYC. She resides in Brooklyn, New York with her husband, Michael, and their amazing eight-year old son, Samuel.

My husband has just kissed me goodnight, “Don’t stay up late,” he says.  I tiptoed across the hallway to peek into my son’s room; he slept heavily with his mouth wide open.   It was 11pm and an array of fabrics, zippers, needles, pin-cushions, yarn and crochet needles flooded our living room table.  I had nowhere to rest my cup of tea so I held it tightly and slowly sipped the sweet midnight fuel that sparked the creative engine that allowed me to work on my latest project.  I was designing a new purse for my on-line retail shop on Etsy called “MadebyLuella.”  Hours later, I pulled the sateen covers over my head and hoped for a restful four-hour sleep, yet deeply aware of the many roles I will play the moment I arise.

 

Motherhood has been the most important role I’ve undertaken since the birth of my son, Samuel, who is almost eight years-old.  Just like other parents, we celebrated his accomplishments.   My husband and I reveled when Samuel took his first steps at 2 ¾ years old; we rejoiced when he babbled his first word at age 3 and celebrated when he read his first word at age 4, hit his first tennis ball at age 5, and wrote his full name at age 6.   However, we have also faced unique challenges.  Samuel has Down syndrome.  When he was 5 months old, he underwent open-heart surgery and since birth has been under the management of numerous medical, special educational and therapeutic services.  As the years progressed, I worried incessantly about his health, his academic performance, his social life, and especially his future until one day I had to worry about me.

 

I was already then in the middle of what I now know was a progressive ailment that affected my balance, energy and mood.  Ironically, the day in which I came to a peaceful realization that I had to start listening to my body coalesced at an event called, A Day of Joy in Oct 23, 2011.  Special Education therapist and parent empowerment coach, Shane Kulman facilitated this unique day devoted to mothers with special needs children. I had immersed myself completely into Samuel’s life, even neglecting the basic elements of good health such as eating well and exercising.  Events from that day, which included movement, musical, dramatic, and art-making activities propelled me to cry out, “Listen to me, there is something amiss!”

Mothers perform their jobs so thoroughly that we neglect our plight and well-being as individuals. A Day of Joy had unleased moments of truth that allowed me to understand that I needed to address my physical, mental and emotional well-being.   It was a long and arduous process, but a year later, November 2012, at the age of 43, I was diagnosed with Parkinson’s disease.

Parkinson’s disease is a neurodegenerative disease that affects movement signified by the lack of dopamine production in the brain.  Dopamine is a neurotransmitter that controls motor function.  Though there is medication to manage its symptoms, there is no cure.  I grieved over this diagnosis in the same way that I grieved over first discovering that Samuel had Down syndrome. The things I worried about for Samuel were things I now worried for myself!  I mourned the loss of my idealized future self.  How was life going to be with Parkinson’s disease?

I learned early in the diagnosis to find the right doctor and experiment with different kinds of medicine to treat the symptoms associated with the disease such as rigidity of the muscles, lack of balance and the inability to walk properly.  In addition, I learned to cultivate a practice of strengthening my body, mind and spirit.   A subset of that work focused on creativity, which involved finding a joyful activity that allowed me to carry peace everywhere I went.

The effects of the medication coupled with a positive attitude proved staggering for my physical, mental and creative pursuits. It was during this time that I re-discovered crocheting and painting.  By February 2013, I was making scarves, by March a yoga mat holder, and by April, I crocheted fabric-lined purses.   In the meantime, I was also writing my business plan for my project, Luella Adan’s artTalk.  Immersed in this flow of creativity I learned to knit and embroider!  By October 2013 I had also painted a series of mandalas, round images like flowers with intricate designs used for meditative purposes by monks in Tibet.

I found peace in the process of creation and received great fulfillment in the act of finishing one product.  This creative journey was conceived as a means to assuage the effects my diseased self and it has impacted my life in ways I could not have ever imagined.   The hobby of making purses and painting mandalas grew into an obsession, which I turned into a constructive enterprise.  In April 7, 2014, I opened my online-shop on Etsy, “MadebyLuella: Carry Peace Everywhere,” in hopes that I may find a home for each of the objects I have created.

Entrepreneur was the last word I would have used to describe myself in the past. The word connotes someone with a keen sense for business and deep knowledge of risks and profits.  Recently I have come to understand the word in its original French interpretation, entreprendre – meaning “to undertake.”  This definition encompasses what I believe is the key to understanding my role as both mother and entrepreneur.   It means engaging in any novel enterprise whole-heartedly, a process from which we discover and learn something new about our self and others.

Entrepreneurship addresses the ways in which one undertakes the challenge of running a business but I will go out on a limb and say that we are all entrepreneurs undertaking the most serious business of all, running our lives.  As the roles of motherhood and entrepreneurship intersect, I pose this question: How can one create an enterprise that will support, cultivate and encourage another person or entity’s needs while retaining one’s authentic-self intact?

I have always felt the positive impact that creativity has weighed in my life.  Tonight, after my husband and my son are both asleep, I will reach out for that cup of tea to keep as my companion amidst the tapestry of notions displayed on my living room table.  I will design and create the latest addition to my Etsy shop, and reflect upon the lasting rewards that will come from the fruits of motherhood and entrepreneurship.

This writer’s Bio

Luella Adan is an experienced classroom educator who honors various modes of learning and values meaningful integration of real world and classroom experiences.  A passionate museum educator, she launched her own blog in the fall of 2013 called, Luella Adan’s artTalk, an initiative that promotes safes spaces for dialogue about art.  http://luellaadan.wordpress.com/ Luella opened her online Etsy shop, “MadebyLuella: Carry Peace Everywhere” this spring 2014.  http://www.etsy.com/shop/MadebyLuella?ref=search_shop_redirect    She is a staunch advocate for Down syndrome awareness, and currently co-chairs the Dance for Down Syndrome Fund Raising event which benefits programming at GiGi’s Playhouse, NYC.  She resides in Brooklyn, New York with her husband, Michael, and their amazing eight-year old son, Samuel.

I am a proud parent of a son who has autism. It sure is not easy. Some days are great, while others are not so much. I live with my son, (my only child), my husband and my mom. I have a good deal of support at home, even though often times it seems as if I am a single parent. It can be overwhelming and stressful to parent a child with special needs. Nevertheless, I always believe there is a light at the end of the tunnel. I always strive to be at peace, to think positive and to be full of joy. Each day I remind myself that I need to be who I want my child to be. (Thanks Shane). Parent support has become such a a valuable part of my life. We are here to help each other get to where we need and want to go.
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I belong to a parent support group called My Time Inc., which I believe is like no other parent support group out there. It’s  a group that empowers and uplifts its parents to be the very best they can be for themselves as well as for their children. We believe that in order for our children to be happy and loved, we as parents need to be happy with who we are and to love ourselves unconditionally. We have come to know this and we do put ourselves first at times because if we don’t, no one else will.
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The parents at my support group are not only parents of children with special needs, they have become my friends. They really do care about what is happening with me and my child. We call each other, we check up on each other, we go out together and we support each other, no matter what. We laugh together, we cry together, we have each other’s back. It’s good to know that I am not alone, my friends are a phone call away. I am thankful for these wonderful women and men who were given this incredible opportunity to care for these wonderful and beautiful children with special needs who depend on us for so much. I believe we were carefully chosen by Christ to do his wonderful work. We all need support and I am very fortunate to have each of these parents as my rock. It’s great to know that I am not alone on this incredible journey. I am thankful for this blessing each day…..
Because I have a child with special needs doesn’t mean that I don’t have hopes and dreams. I know many of us parents were professional women who had to leave their jobs and careers to become full time care givers and that’s okay. We made that difficult but necessary decision because it was the best thing to do at that time.When our son was first diagnosed with Autism, my husband and I decided that we would not have any more kids mainly out of fear as well as the constant worry of what will happen to our son as he becomes older.
But as the years go by and our children gets older, we parents, especially mothers, realize that something is missing from our lives, we feel incomplete. Yes we are great mothers, wives, daughters and friends. But then we start asking ourselves, where am “I” in all of this? What  do I want to do with the rest of “my” life? Our lives should not come to a screeching halt just because we have a child with a disability. We have so much more to offer.
When the opportunity presented itself for me to become an entrepreneur, I jumped at the chance. This was something I would love to do. To become a Business Owner/Partner of Traci Lynn Fashion Jewelry. This business is so much more than Jewelry. It’s about the friendships that are cultivated, the networking, the partnership of like-minded people, the incredible stories of lives changing, the inspiration. As our leaders always say , “You’re in business for yourself, but not by yourself”. I love jewelry and I know many more women do as well. This business would allow me to become financially independent and would be the tool that I can use to leave a legacy for my child. My husband and I realized early on that our son would need so much support for the rest of his life. In order for him to live a life we know he deserves then we would have to have a reliable and steady stream of income because we would not and could not depend on Medicaid and Social Security to provide for all of our son’s needs.
I also realize that I am not alone with these thoughts. Many mothers out there are thinking the same as me. I will be able to show them how they can also become business owners and how they can also provide for their child’s future by becoming my Partner in this incredible business. We all have to take that first step….we are “HERE”, where do we want to go next…..the sky’s the limit…..
If you would like to see the beautiful jewelry I am offering, I invite you to look at my website and treat yourself! It is Mother’s day you know…..

Expanding Awareness (Thank you, autism).

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