In the past 6 months, there have been two Day’s of Joy. LA and NYC. I share what I’ve seen, and experienced.

#Adayofjoy

#Adayofjoy

Why is JOY important to health? I recently asked my client (a Mother of a 12 year old autistic girl) What is joy to her? She replied, making sure my child is fed, and I have a roof over my head. ALARMS went off in my head. Is this joy? I define this as survival. What does joy mean to you? Is it a party? A vacation? Do you have to spend money to be joyful? Can joy be something you create on your own?

The kind of joy that brings health to the body is the kind of joy that you FEEL in your body, travels up your throat and comes out in a burst of energy. Bursts of energy look different to different people. For me I feel my freedom, and I talk fast, or jump, or ideas come to me fast and furious of how to do more of what I love.

How I got to know what my JOY looks like, ha ha ha, well I had and have to walk through the bog to get there. The bog is the swampy waters that are filled with anger, blame, shame, guilt and worry. My joy expands whenever I get to release, or realize how much of the bog I walk through or possibly even get stuck in.

A Day of Joy is a day meant to feel. In fact I open the space inviting guests to ponder; maybe they won’t feel joyful at all! Maybe they will have feelings of being pissed off, sad, angry or even confronted! I witnessed many women taking part in very new and experimental ways of expressing themselves. Some found it very easy, some were extremely challenged. I only know self-criticism and judgement to be the reason. Why is this so common? Why do we women allow judgment to take us down. Why are some so stuck in our bodies. Afraid or challenged to make big movements with our bodies, or to explore a new way of moving. Why are some of our voices afraid to get loud? It was interesting to witness.

I work a lot with women and Mothers finding their voices. Are you comfortable being loud, are you comfortable using a strong voice, when you are asking for help? Are you comfortable with an audible sigh?  Try it and see.

My goal for A Day of Joy, is for women to expand beyond what is their “norm.” Everyone’s “norm” is completely different. I am extremely aware of how it’s “easy” to stay in a comfort zone. Doing the same thing every day, having the same complaints, the same schedule and literally having no hope for dreams to come true. I see women who give up on their physical selves. On a deep level of self-care, these things matter. I see only doing the minimal self-care, shower, brushing teeth, and dressing in clean clothes as survival mode.  A Day of Joy, is a day to break out of survival, to go beyond any limitations that have been set by belief systems or what someone else said was true.

A Day of Joy is a challenge for all women that show up. The type of “joy” that I introduce can show up in two weeks, a month later, or maybe immediately.

Overall I saw women in LA adapt much quicker to the workshops than the women in Brooklyn.  Why?  Why were the women of the west coast more open to new experiences and using their voices, and breathing past what is “right” and “wrong?”  I wonder.

I WELCOME comments on this!  Let’s keep it friendly and loving, and please only speak for yourself….

Cheers!

Shane B. Kulman, www.yourbeautifulchild.com

To sign up to the Your Beautiful Child Newsletter, click here:http://eepurl.com/TOEMn

I embarked on this journey the day my wife and I decided to change roles and become parents. It has been quite a journey due to the unique challenges and joys I’ve experienced making me think what is really important in life.

special needs dada ASI can certainly say that in the beginning things did not turn out as expected, shockingly we were introduced to a new world.
Parenthood in general changes people’s lives, raising a child with special needs turned out to be more demanding and challenging. Our son, like many others came from Planet Spectrum and on this planet social rules and behaviors are not set by the majority rather than the individual. Verbal communication is difficult and the 5 common senses are perceived and felt different by Spectrumites, health is somewhat a vague word compromising internal physiology in various aspects from individual to individual.

I have been on this journey battering with medical, educational and social systems at times the task seems overwhelming almost impossible to achieve, however as a father I go on. I will admit there are times I feel irritated, angry and depressed, what has and continues to help me are support groups most of which I’ve created myself for the lack of them.

I do realize that unlike moms men in general are not big on supporting each other, nevertheless I haven’t given up on the Idea of a fathers Support group that is why I created the Special Dads support group, for all Fathers of special needs children’s.
We meet monthly at different venues.
The setting is very casual, it’s a great opportunity for Dads to socialize and share with other Dads their views from a man’s prospective without feeling judged.
These meetings are meant to strengthen the fathers’ role as a caregiver and to learn acceptance towards our children’s diversity by sharing our personal success and struggles for fathers who are involved in their children’s lives.
In other words it’s for “Guy Talk for Fathers of Children with Autism and Other Special Needs” it provides the necessary platform for fathers to gather information and share personal insight from other fathers in the same situations.

https://www.facebook.com/groups/NewJerseySpecialDads/

http://www.meetup.com/NewJerseyParentAdvocates/

Fathers have a lot to give to their children; some men get so depressed about dealing with the needs of a special Child that they become distant dive into their work just to escape.

I have learned that there is joy in acceptance and that although our children are different their love is unconditional and they are able to achieve greatness.

I have learned to embrace my role as a father and made it into something greater the bond I have with my son grows stronger every day, most of the activities we plan are about my son and the results are amazing, my son flourishes and continues to learn and grow in to a wonderful teenager. Over the years I’ve become a coach a mentor and a friend for my son but the most important role is being a Dad who dedicates his time for his child.

On this Journey to Planet Spectrum nothing is more precious for YOUR child than the time YOU spend together!

 

Andrea Siragusa
https://www.facebook.com/NJ.Family.Advocate

Founder of New Jersey Parent Advocates

■ I Started My Advocacy career in 2009 with a local Group there I held the position of Director of the Parent Advisory Board from Jan 2010 to Feb 2011

■ In 2010 I had the pleasure to meet another local Organization I held the position of program Coordinator including organizing meetings. Until March of 2012 I ran Monthly support meeting providing free parent support on navigating through the special education process by means of training and workshops these support meetings meant to empower parents and learn to self advocate for their children.

■ seeking to do more I decided to do something totally new. Something I could call my own.
I decided to create my own organization in the hope to foster a cooperative environment with other Advocates who are willing to help as many Parents as possible.

■ On March 18 2012 I founded New Jersey Parent Advocates

Background:

■ New Jersey parents’ Caucus, Inc. Professional Advocacy Training

■ SPAN: Span Resource Parent.

■ New Jersey Statewide Parent to Parent

Awards:

2012 Nominated by SPAN and recipient of the Parent Anonymous Parent Leadership Award

Projects I’m currently involved with:

Special Olympics New Jersey, LTP coordinator February 2014 to present

As the Local Training Program Coordinator (LTP) for Area 5 Special Olympics I run a bowling team.
“Middlesex Pin Busters”

New Jersey Special Dads2013 to present

This group is for all Fathers of special needs children’s. For fathers who are involved in their children’s lives. In other words it’s for “Guy Talk for Fathers of Children with Autism and Other Special Needs” it will provide the necessary platform for fathers to gather information and share personal insight for other fathers in the same situation.

New Jersey Parent Advocates Group March 2012 to present

Our purpose is to create strong parent advocates through training, sharing of best strategies and guidance based on successful advocacy experiences. To encourage parent advocates to build and maintaining positive, collaborative partnerships with all professionals and administrators working with and for the development of their special needs child. To guide parents in developing their NJPA voices, in positive and constructive ways, at their local school district level, their county level and our state level. To work with other organizations to make positive changes for the betterment of special needs individuals as we help them meet their personal goals as they become contributing and valued members of society. To grow this organization as a known and respected entity that works to empower parents to become successful advocates for the special needs community.

Autism Families Group 2012 to present

This support group is for special needs families to share life experience community events and experience. This is a place where you can share your child’s achievements no matter how small or how great, a place for when you need a listening ear or a shoulder to cry. In short, any information you might think it’s important and worth sharing for the greater good of all

 

 

 

Brian R. King, LCSW, was a guest on Your Beautiful Child Radio. I welcome any and all insight he has to share…. He has a book that I own, and has so much power to share from a Dad on the autism spectrum, it’s a must have. LET’S RELATE – BOOK on AMAZON

Meltdown At The Airport By: Brian R. King, LCSW

I’m going to be very vulnerable in this post for the benefit of all who read it. Let me start by saying, “I HATE FLYING.” I realize it’s a necessary evil as I receive more requests to give presentations out of state. Between the bright lights, echoing overhead announcements and people repeatedly bumping into me at the airport, there’s the rapid pressure changes and unpredictable motion of the airplane itself. You’d think that would be enough to send me into a meltdown.

Yesterday I woke up at 4:30am to get to the airport to fly to New York for a presentation that night from 6:30-9:30pm. The landing into New York had significant turbulence and in addition to praying to God I gripped the seat in front of me so tight that I had a hard time letting go and my hands were stiff and sore.

The rest of the day went smoothly and I did an awesome presentation, met some amazing, generous people and received some of the best feedback I’ve ever gotten. I was back to my hotel and resting by 10:30pm. That’s a 15 hour day with about 1 hour of downtime in the middle.

I awoke the next morning feeling pretty worn down and very eager to get home to my family. The flight out was fine and I had a layover in Philadelphia before heading home to Chicago. I didn’t realize how overloaded and fragile I’d become from my intense schedule until the following happened.

After sitting in the airport for over two hours, 20 minutes before my flight was supposed to board, they announced the flight had been canceled because of problems with the plane and they didn’t have another plane to replace it. I quickly took out my itinerary and called Expedia whom my client had used to book the flight. The woman who answered was cold, monotone and clearly following a script. She gave me some crap about what she couldn’t do because of how the flight was booked and BLAH BLAH BLAH. She told me I had to go to the customer service desk for the airline.

By the time I located customer service the line was at least 100 people deep and not moving. It was then that someone announced that there were no available flights to Chicago and that we’d have to make overnight accommodations after booking another flight. I began shaking, my eyes began to tear up and all of the sounds in the airport became louder and the lights became brighter as I contemplated having to stand in this 100 person line for an undetermined amount of time in the hope of getting home. I was beginning to shut down which was making it hard to think and hard to speak, I couldn’t think of what to do.

So I did what I encourage every other spectrumite to do in a situation like that. I called for help. Who did I call? My wife Cathy. I explained in my very shaky voice what was happening and how much difficulty I was having even thinking. My darling wife Cathy who is a greater gift from God each day that I’m with her, remained very calm and guided me step by step in what to do.

She told me to look for one of the people that transports those with special needs around the airport. I saw one and slowly walked over because I was so shaky I felt my legs were going to give out. Cathy coached me on what to say because I was having difficult getting my thoughts together. I think I said something like, “I have Autism and they canceled my flight and said they don’t have anymore flights and I need to get home.”

The woman I asked for help is named Shawn and she gently took my bags and told me to sit down in her tramcar because she could hear the tremble in my voice and could see how badly I was shaking. She took my itinerary, asked me a few questions and said she knew someone that could help.

I sat bent forward, doing some stimming as Shawn navigated her tramcar through a sea of people as Cathy continued to talk to me and keep me calm. When we stopped Shawn asked if I needed anything and I said, No. She said she was going to talk to someone about helping me and she’d be right back. It seemed like an eternity and Cathy kept talking to me. Shawn came back with a gentleman right behind her who handed her a boarding pass with my name on it for a flight that would be leaving an hour and a half later than my original flight was supposed to.

When there were no flights to be had until tomorrow, Shawn knew I needed a solution. Shawn asked her supervisor Dale for help. He got me a seat on what I later learned was an overbooked flight. When we were seated I was surprised to discover that my seat was in the fourth row so I would be one of the first people off the plane.

I am now home sitting on my own coach as I write this to you in order to convey one simple truth to my fellow Spectrumites that you must never, ever forget. There is absolutely no value in going through your life stubbornly refusing to ask others for help. I was seconds away from a full blown meltdown at the airport so I called my wife Cathy who helped me find Shawn. Shawn led me to Dale who helped Shawn help me.

I am sitting here so grateful and humbled to my core by how generously and tenderly I was taken care of today by my soul mate and two complete strangers. Thank you doesn’t even describe it but I’ll say it. Thank You Shawn and Dale at the Philadelphia Airport, you did your employer U.S. Airways a tremendous honor by how you conducted yourselves today.

To my wife Cathy, I will continue to treat you like the gift you are until my last breath. To my fellow Spectrumites, as often as I use my own life as an example of who we can be at our strongest – I also want to use my life to demonstrate how absolutely necessary it is to have others in your life who are prepared to help you in your most vulerable moments. Needing these people isn’t a sign of weakness so get that pile of crap from between your ears right now. It is never a sign of weakness, it never was and it never will be. It is, and always will be the precious gift of service that human beings give to each other.

I am so eternally grateful to those who helped me today, and I hope my sharing this has helped you. Please share this with others. 

Brian R. King, LCSWAbout Brian R. King, LCSW

Brian R. King, LCSW (ADHD & ASD Life Coach) is a #1 Best Selling Author, 25-year cancer survivor, adult with Dyslexia, ADHD, and Asperger’s. He’s also the father of three sons on the autism spectrum. He is known worldwide for his books and highly engaging presentations that teach the power of connection and collaboration. His strategies empower others to overcome their differences so they can build powerful and lasting partnerships. His motto is: We’re all in this together.

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 ~

Image

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.

Image

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.

Image

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).

On Your Beautiful Child Radio I have asked many guests “what does autism mean to you,” There were many answers. My answer is FREEDOM. Today the official Autism Awareness Day.  I realize how deeply this answer rings true.    Because of autism, I have a work schedule I create, I have traveled and connected with amazing families, I have purpose and passion in my life, I have permission to create and just be.

My first student (with autism)  was non-verbal and had many “stimming” repetitive behaviors and echolalia.  I began to see a young boy do whatever he needed and wanted to do to make himself happy. He was not offfected by the judgements  of others. He did not follow what was “appropriate.” He was also not impressed with my cool toys, my happy smile or my eagerness to work with him. He could not naturally be re-directed or manipulated to do what “typical” children were doing. He loved Thomas the train DVD boxes.  I’ve worked with many children and I observe their methods of communicating and expressing  themselves. This includes flapping their arms, spinning, continuous jumping, repeating songs, commercials, etc.  I joined them, I observed them, I’ve loved them. They showed me the importance of communication without words, and they showed me how to “be” without judgement. These children do not comment if my hair is not washed, if I have make up on, or if I’m wearing the same jeans twice in a row.  They do not pay attention unless they want to, and my verbal young friends on the spectrum do not speak unless its meaningful. They are distracted by the cool things in life, mostly sensory oriented. Why is it “normal” to ignore these things?  Typical children are taught to compare and compete with each other. They are put under pressure to take tests and be judged on the outcome.

Children on the autism spectrum are given space to grow at their own pace. There is no forcing them to do anything.  I have taken this to heart. I have learned to accept my processes, even if at some point I thought they were wrong or not good enough.  These children have healed me of judging myself, of comparing myself to other women, they have shown me the importance of silence. They have given me space to create. So many children on the autism spectrum have creative gifts, they are amazing artists, singers, and creatives. They have gifts, and they have made me shine the line on my own gifts.

 

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There are many therapies and schools of thought on “what works” to “teach” children on the autism spectrum. What works for one child does not work for all children. Why does the rest of the “typical” world believe it does. Do you like to be cared for exactly like someone else?  Do you work to try to be exactly like anyone else?  Watching women who try to be the same as celebrities is never-ending, and I see it as sad. It’s based on the feeling of not being perfect or enough, or likable.

I am so lucky to have so many individuals with autism in my life. I see them as healers, as the most real down to earth people I know. I know if everyone tuned in to their ways, the world would be a different place.  I am SO GRATEFUL for all the children in my life. I am grateful for all the Mothers who trust me with their children.

Take action this autism awareness month. We make it easy…Here is one way…

https://www.facebook.com/events/615089815246027/

Blessings,

Shane

Originally posted on The Future in Our Hands:

developing synapses in the brainby Janice Fletcher, Associate Professor Child, Family, and Consumer Studies, University of Idaho, Moscow, Idaho

The first years of life hold the most critical periods for brain development. A hundred billion brain cells develop in the nine months that a mother’s womb nurtures a developing person. When the child is born, these billions of brain cells, called neurons, begin to connect to help a child build a useful brain. These connections are called synapses. The number of synapses multiplies to make trillions of connections that form a “map” with increasingly more complex connections. The network of connections influences intellectual capacity, memory, problem solving, and language. Most of these connections are made in early childhood with the first year being remarkably busy!

There is no longer a question of “if” it is helpful to provide a stimulating environment for children. Research tells us that it is not only helpful if…

View original 1,054 more words

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