HOPEStrong – All of you are HOPELights♥ and YOU WON the American Express Big Break Facebook Makeover!

Posted on July 25, 2011 by Hopelight

HOPELights Magazine Autism Special Needs Children wins American Express Big Break

The Scoop:

Out of 11,000 submissions to American Express for small business and on-line concepts, HOPELights entered late one night after a long hard day of IEP meetings for my daughter with special needs.  I had thought twice about it – the energy to write it all up (this vision of a HOPE-HUB, our mission, the “wish list program,” plus photos and essay, etc.) …..but hope whispered in my ear, give it one more try.  When it came time to press the “submit” button, several of the required photos kept showing boxes with a red “x.”  I was so frustrated.  After another half-hour of trying to repair the submission, I just gave it up and tried to be grateful for the opportunity to refine my thoughts of the future in writing, it helped me focus after a painful day in the world of all things special needs.

A couple of months later, I received a call from AMEX’s ad agency.  I thought it was a telemarketing call at first and found myself simmering at the thought that someone was going to try to sell me something.  That was not it at all!

The agency informed me that HOPELights had been selected as one of the top 1,000 out of the pool of over 11,000.  Lots of paperwork had to be immediately reviewed and submitted…background checks, releases, this, that and stacks of printed documents needed to be signed and shipped overnight to the headquarter offices.  I was informed that there would be a panel of some pretty tough, smart, and perceptive judges, which would then narrow the 1,000 down to 10 and that the announcement should come in after Memorial Day weekend.

They informed me that if we indeed made it to the top 10 after the thorough review, AMEX would come down to Texas and create a video, then this video and nine other beautiful businesses would be presented to the world via American Express in the “Big Break” contest on Facebook.  Only the top five could win.

I was stumped.  How could this be?  As you all know, those with family that have special needs or people with special needs themselves are definitely a minority.  While statistics state one in 19 have disabilities from age 18-64, and one in 9 households have children classified as “special needs” in the public school systems, it was mind-boggling to me that our little support page of hope and program materials for children could have made it to the top ten.  I think this shows a great deal of heart and inclusion from American Express and all of judges.

We were so grateful for the inclusion.  However, mathematically I knew the odds.  The topic of special needs and disabilities are just a bit “scary” for the public.  Go to a concert, a store, a restaurant.  Think about these statistics – one in 19 – where is everyone?  They are typically at home in a biodome of their family.  It is so difficult to haul around wheelchairs, not to mention the lack of ramps and easy access to things, or just the challenge of working with a child in large public settings.  So how, mathematically  were we supposed to overcome the stigma/taboo topic of special needs and compete against companies 500% our size, who had many cards in their back pocket – social media representation, PR specialists, ample employees who could solicit family and friends, funding for it all.

So I had settled into gratitude mode.  The video alone from American Express could help tell the story of the hope that I had found in ways I could not even begin to imagine.

http://www.youtube.com/watch?v=cpCkA9RtZuQ

Determined, I set my mind on reaching out to people along the way and logged 18 hours a day for the duration of the contest.  My daughter with special needs was at summer holiday at her father’s house, except for the weekends, so I was able to commit myself fully in non-work hours to spreading the word.  It was excruciating for me because I felt that I was “spamming” everyone with a request – I know now that I could never be a politician,

running around asking for votes!  I have a new respect for politics now; it takes a great deal of tolerance, rejection, and moxi.  So many things went wrong, from the installation of applications to incorrect links – it was tough to not let the wrong things cloud my persistence.

The results came in.  We made it to the top five!

What a lesson I have learned!  While mathematically the win could not calculate in my hard-wired brain, the heart knew otherwise.  At the final moments of the contest last week, I found myself at 11:59EST on my little page of HOPE and ended a post, where I first started years ago.

“Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.”

- Lyn Yutang

So who ever heard of a special needs outreach / small biz making it to the top five in America?  Things are changing, so have HOPE that all things are possible.

The prize for HOPELights?  A visit to Facebook HDQ in Palo, Alto CA for several days, working with their on-line strategists on how to build our HOPEHub, Wish List Program and improve services to our members.  On top of it all?  A grant of $20K in funds to help build this umbrella of hope and spread the word on Facebook.

Therefore, you won this.  Not me.  YOU.  For all of those who have thought that the world forgot about you.  They have not.  They just do not know what to do.  I hope that we can begin to change all of that and follow the trailblazers who have done so much already, carving out a path for people like us.  For all those who felt that nothing was possible, I am here to tell you it is.

This contest was about serving our children with special needs, providing improved support for the parents and those that love them and embracing adults with ABILITIES so that the quality of our lives can be improved and sustained.

Our goal?  To transform perspectives from despair to hope, frustration to patience, sadness to moments of joy and spreading love, light and possibility.  So congratulations to all HOPELights♥ members.  You did a great job and cheers to you for keeping the light of hope in your heart and taking the road less travelled.

Thank you members, friends, colleagues, partners, American Express and most of all…. Thank you Facebook.com.  We also want to congratulate the other 4 companies that won, we are in such good company!  For the five who did not make it, it was an honor to be included on a list that showcased your brilliant ideas and contribution to entrepreneurship.

May hope find you wherever you are today!

Dawn Grosvenor
Founder
HOPELights♥

 

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HOPELights♥ the way for American Express OPEN Big Break Contest – All Things Special Needs!

Posted on July 9, 2011 by Hopelight

Our HOPELights♥ video is out now!

Our participation in the American Express OPEN Big Break for a FACEBOOK Makeover and $20,000 grant for our outreach program to parents is well underway.  The contest is transforming my world, one social share media button at a time.

A few surprises along the journey…. Perfect strangers showing support — becoming enthusiastic with contagious HOPE and spreading the word, a relative of my sister’s husband that was signed up for HOPELights FB Daily Inspirational messages who didn’t even know that it was our group and now we have connected, the kindness of several adults living with Aspergers, Autism, Spina Bifida or other disABILITIES that have generously spread the news with their high-iq of networking savvy and much more!

Bravo to the video team!  The brand manager and editors at American Express along with their creative agencies of record did a fabulous job!

A very long time ago when I was trying to come up with the name of our organization and non-profit support work I saw this quote.

“Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.”
-Lyn Yutang

Our road of hope has been winding and full of ups and downs, but I am reminded that it is not about the destination, it’s the climb… (according to my daughter who loves that Miley Cyrus song)

So please enjoy this inspiring video – and if you feel our work has merit, after watching – the vote for us today details are under the “show more tab” or just go straight to: http://www.facebook.com/Open?sk=app_140670829343013

Much love and all things HOPE.  -Dawn Grosvenor @ HOPELights♥

 

 

 

Posted in American Express Big Break Contest - Facebook - HOPELights Magazine Special Needs Kids, caregiver, Hopelights, philanthropy, special needs children | Tagged , , , , , , , , , , , , , , | Leave a comment

“What Next”? – Special Needs Mom Learning to be OK with the Skin I am in. A pre-post for an amazing video journey.

Posted on July 4, 2011 by Hopelight

Recently something happened that turned my world upside down (or right-side up). The HOPELights Facebook page and our company was selected by a Fortune 100 Organization out of thousands of submissions for editorial consideration in a spotlight program.

The footage airs in less than 24 hours and I was not able to see the one-minute video they had made of the HOPELights Facebook page, our products, mission, vision, etc. until just before the holiday weekend.

My reactions to the video spanned the spectrum of emotions – from being absolutely horrified at the way age has crept up on my skin…… to shock and awe as my daughter’s beautiful smile danced across the screen beaming a positive, bright perspective on behalf of all children with special needs.

As a single mother of a child with special needs, entrepreneur and servant of all things marketing/business development for clients that I hold near and dear to my heart…it has meant the sacrifice of a great many things to build this boat of hope.

Things like – spa days, facials, manicures, dating, going out on the town and many more too numerous to list here.   I have had plenty of tv time from my days at the Science Museum – but I was always marketing another brand, a NASA Astronaut, Rudolph Giuliani or some other brilliant exhibit… never myself.

I have had a difficult time writing here, for instance, in this blog – because it is hard to write about myself or my own experiences – it’s much easier to be HOPELights♥ on Facebook, write a book, presentation or paint in oils/acrylics when it comes to just being “me”.

I turned the video off after watching it twice, and went outside to my patio, disgusted with my appearance and shedding some ridiculous womanly tears.  Too much powder on my face, my hair – goodness, what was it doing in my face?

My voice? I heard the familiar undertow of  “fragments” cracking under the strain of emotion and restraint of tears to certain questions.  Questions like…. Why did you leave your full-time job? How did you feel when your daughter was diagnosed with autism? Why did you create the Facebook page for parents? None of the questions were included in the video…. Only fragments of the answers. (thank goodness since I spent 10 minutes answering each one of them, I felt so sorry for the camera crew while I was churning through my brain to come up with the “Haiku” of what HOPELights is…)

My brain zoomed back to the video footage at the office – why didn’t I think to do this… to do that?  Video footage at the house…. Everyone at the kitchen table, a houseful of kids with special needs and parents – wait – is that my sister’s deep freezer in the background? Oh no, look at the bookshelf – some of the photos were at an angle instead of being straight.  Back to my face – are those really skin pores I see with the HDR cameras or is the 3 inches of makeup I tried to splash on to cover any imperfections?  What about that one shot, where my mascara is slightly smeared and it makes my entire eyeball look as if it is about to fall out of the socket?

Then the alarm on my iPhone went off, saving me.  It was time to pick up my daughter – I grabbed my purse, shoes and phone then headed out the door.  Still crying a steady river of tears – frustrated that my one big shot was marred with these imperfections.

After a long journey in Dallas traffic on a hi-way called 635 known for horrific delays, I ripped myself apart like only a women can do to themselves.

Completely forgetting everything I preach every single day about acceptance, hope and all things courage.

I arrived to see my bundle of heavenly joy.  She reached up and touched my face, gave me a tender kiss, a hug and with her 1% expressive communication said, “hey mama….what next?”.

“What Next?” My daughter with special needs….autism, PDD-NOS and other chromosomal disabilities including missing bones in her forearms… favorite thing to say is…. “What Next”? She can say this up to 300x daily…..It is my own fault, since I have always treated her as an equal, explaining in detail everything ahead of us, documenting these things through photographs, calendars, iphones –you name it, I want her to know exactly what lies ahead, she deserves to know.

So What is Next – I thought…

What is Next….What is next is that my skin pores are about to be circulated throughout the world to millions of people we don’t even know and then I stopped.

No.  That’s not what’s next….

What’s next is the vision of hope, planted deep here inside my heart to change the quality of life for parents of children with special needs is about to be spilled out with uncompromised passion.

What’s next is that my little girl, who has shown me the definition of unconditional love – is about to be shown to the entire world… her spirit, her joy, her wonder and all of her tenacity to accomplish things that doctors said she would never have the ability to do.

What’s next is that everything I am, or hope to be has been knitted together by a team of expert documentary specialists with such charm, timing and brilliance – something I could have never been able to do financially or creatively.

What’s next? A wonderful Fortune 100 Company stood up for “inclusion” and “the little guy”.

What’s next? I learned to get over my physical appearance and unnecessary self-loathing - forgiving myself for any neglect along the years to my wrinkles, or skin – because I took the road less travelled.  I fought hard and believed in a dream. I believed that the journey I have taken to discover hope can help so many others with comfort that only the light of compassion, empathy and understanding can bring.

What’s next? I will tell you what is next.  A better “me”.
A woman who can forget about the skin she is in and knows what really matters.  The heart-light that burns bright and unconditional love learned from a road less travelled.

And for the record?  Never judge a book by it’s cover – you’ll never guess at the HOPELight shining so very bright inside.

dawn grosvenor aka HOPELights♥

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Valentine’s Day Tips: Parenting Children with Special Needs by HOPELights❤

Posted on February 3, 2011 by Hopelight

Make Valentine’s Day special for your child with special needs!

 
Often children with Down syndrome, autism, cognitive delays or other challenges get left out of the Valentine’s Day activities, because of the integrated parties and social hoop-lah.  We believe Valentine’s Day is for everyone!  As a parent of special needs I have found a sure-fire way to make the holiday special with just a bit of planning in advance. 

 It all depends on how you approach the holidays with your special needs child.  Most holidays come with a variety of events that could stimulate their senses. A creative holiday craft idea could essentially act like a sensory toy for your child with Down syndrome, autism or other cognitive delays.

Making Valentine’s Day cards can transform the annual holiday into a learning event.  Children with special needs have proven to be great visual learners*, so we have a delightful project that would help with learning names of friends and teachers at the school. 

Valentine’s Day Cards from Children with Down syndrome, Autism, or other Cognitive Delays:

  1. Get a listing of all the students, teachers, therapists, and school officials that integrate with your child on a weekly or monthly basis. 
  2. Get permission for you to visit the school the week before and take photos with your either camera or cell phone of each person.
  3. Download them to the computer and then print out all the photos in 2” x 2” squares on white standard copy paper (or glossy if you are feeling artsy).
  4. In advance, purchase Valentine’s Day cards that have an envelope that accommodates the cards, or just purchase simple note cards from your local grocery, office, or drug store.
  5. For each Valentine ’s Day card, help your child write the name of each person as they are viewing the 2 x 2 square on the actual store-bought valentine’s day standard cards.
  6. Have your glue stick ready, and insert the valentine’s day card into the envelope, then paste the 2×2 photo on the outside of the envelope.  It is up to you if your child has enough patience to write the name a second time on the outside of the card.
  7. Imagine the delight of accomplishment on your child’s face as you send them proudly to school with a stack of customized Valentine’s Day cards for the role models and friends at school.  This activity is a two-fold blessing, as teachers and therapists will probably hang on to those cards years after their beautiful students with special needs have moved on to other grade levels and activities!

The entire activity allows you, as the parent, to also get to know the people that your child spends more time with a little better and appreciate Teachers for all the hard work they do each and every day!

*from research and methodology represented in Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH).

Posted in autism, cerebral palsy, Down syndrome, Holiday, Holiday, Holiday, Holiday, Hopelights, special needs children | Tagged , | 1 Comment

Respite…What is that? For me?? Why?

Posted on December 16, 2010 by Hopelight

When I first learned of the word “Respite”, I was a single mother of a 7 year daughter with autism.  The term came to me from a new friend who had a daughter about the same age, but with Down syndrome.  She told me that I needed respite and invited me to “go out” with several other mothers who had children with special needs -while a local church opened their doors with volunteers to watch over about 18 kiddos, all different ages. 

At the time, I crinkled my nose at the thought of leaving my daughter with perfect strangers, and even more so, “going out” with mothers whom I thought would spend the entire time complaining about everything.  I had a lot to learn about life.  

The experience changed both my daughter’s life and me in remarkable ways.  I learned to trust (with sufficient scrutiny and research of course) and I learned to relax and enjoy kindred spirits for one night a month.  I did not realize how much stress was cumulating on my shoulders and it was evident for the world to see, I thought I was a super-mom, invincible and I wore my hard work like a badge of honor on my shoulder.

Since then we’ve made light-years of progress…. I’ve been hiking to the top of Wheeler Peak, the largest mountain in New Mexico, I have gone on river rafting trips through the Grand Canyon, been kissed by the morning dew of rainforest trails in Washington and forged new paths through virgin snow in some of the most beautiful alps you have ever seen.   All of this done without my sweet daughter with special needs, one or two times a year.  I would prefer that she was with me, all 135lbs snuggled in my backpack, but right now it is impossible due to her physical limitations. 

Each time I return from a respite trip I am stronger, more patient and overall my perspective is improved by one thousand percent.  Six years ago if I heard someone saying this very thing, I would have told you secretly that I thought that mother was selfish for spending time away from her child, who desperately needed her love, guidance and comfort.  I have learned to think differently now. 

There are countless studies that prove caretakers of anyone with specialized issues, whether it is a child or grown adult, suffer from day-in-day out symptoms of stress or depression comparable to combat soldiers in war.  The particular study in mind, is one from the Journal of Autism and Developmental Disorders*, in which the team found that a hormone associated with stress was extremely low and consistent with people experiencing chronic stress such as soldiers in combat.  This body of work alone gives parents that weekend pass “validation” to take a step back and breathe.

Fatigue, exhaustion, and narrowed perspectives are all by-products of the loving sacrifices we make.  It is so important to replenish your battery by taking time for yourself through “respite”.  You may not choose to cling to mountainside rocks up to a summit like my crazy ideas of respite, but it is important to do something.  For parents that are single it is especially hard, so consider shorter trips.  For those on a tight budget, we have found programs that could possibly help you, and we have included them here. 

  

TAKE TIME…
It does not matter if it is a simple spa day, a walk in the park or a journey through a rainforest – taking care of you has to be the number one essential in our survival kit of parenting special needs children. 

Think of it this way… when travelling by plane the flight attendants tell  you one very important thing – if the oxygen mask comes down, put one on yourself first, so that you are then able to put one on your child. 

Respite is oxygen. 

I hope you find some room to breathe.

Dawn Grosvenor
HOPELights
Inspire | Believe | Dream | Hope

 ________________________________________________

Following are resources we have found to provide you with tips and ideas on respite, wherever you might be:

  1. National Respite Networker Locator: This site is a resource for you to locate babysitters, caregivers and other professionals nationwide to help you care for your autism spectrum child. http://archrespite.org/respitelocator
  2. Care.com: This site helps you find reviewed and mom supported caregivers and babysitters for your child. http://www.care.com/
  3. Explore our Country:  http://www.nps.gov/index.htm

*Journal of Autism and Developmental Disorders:
The Journal of Autism and Developmental Disorders publishes 10 issues per year and is a scholarly journal focusing on all aspects of autism spectrum disorders and related developmental disabilities. The journal started in 1971 under the name Journal of Autism and Childhood Schizophrenia.

Current Editor:

Past Editors:

Posted in autism, caregiver, cerebral palsy, Down syndrome, hiking, Hopelights, mountain, respite, special needs children, spina bifida | Tagged , , , , , , | 10 Comments

HOPELights♥: 5 Important Holiday Tips: Shopping for Children with Special Needs

Posted on December 2, 2010 by Hopelight

With the holiday’s right around the corner the intensity of the holiday shopping season will be bestowed upon us very shortly (like right this minute). Finding that perfect toy or computer program for a child with special needs can often times be a challenging hunt.

Depending on what type diagnosis a child has, is not nearly as important as communication with parents and understanding the scope of interests for that child.  If you are a parent reading this and find it beneficial, copy and past, forward or send by carrier pidgeon to reach your family to help this holiday season be the best ever.

Most toys for children with special needs toys are designed to educate along with entertain, but it is also important to look at the child separate from the goal of education, so that the holidays are not just loaded with gifts to help that child learn and progress through their challenges, but gifts that make them smile, just because. These kiddos have intense therapy all year round and sometimes a gift that focuses on smiles can far outpace expensive electronic learning aids in quality, value and results.

Understand Their Special Need Is A Must

It doesn’t require a great deal of research to understand what the best toy is for that child with a special need. A little bit of reading and some online web surfing can yield a multitude of results that can help you understand exactly how that child interacts with their toys or computer programs. It could be the difference between that child using and benefiting from that toy or simply leaving it alone and not using it. For example a child with autism would much rather play with a simple basic toy rather than a flashy noisy toy. Basic wooden or plastic toys work best for children with autism spectrum disorders and without knowing that a person might purchase the wrong type of gift, as hectic as the holidays can get you don’t want to find yourself running around returning gifts prior to the actual holiday or be faced with contributing to a tearful meltdown at the most wonderful time of the year.

Think Comprehension Level not Age Group

There are many children who have Down syndrome, Cerebral Palsy, Spina Bifida and other cognitive or communication delays which impact basic comprehension levels. For instance, ask the parents what reading level the child is in school. A child with Down syndrome may be 14 years of age, but at a 2nd grade reading comprehension level. A child with Autism may be 8 years of age, but at a pre-k reading level. This will help when you are thinking about books, puzzles or boxed games.perfect special needs holiday gift much quicker.

Understand the Area of Interest for that Special Needs Child

Some children with special needs really have their likes and dislikes clearly defined. A typical symptom of a child with Asperger’s syndrome will be that they really have one area of focus that they certainly tend to obsess over and understand inside and out. Whether it is astronomy or the ocean they will understand everything there is to know about that specific area of interest. Understanding and realizing this could help you really pin point that

Understand the Mobility and Motor Skill Development of the Child

Some children with special needs can be far behind in motor skill development. A good cue is knowing if they can tie their shoes. If a child is unable to tie shoes, they will be unable to enjoy threading little beads or sophisticated arts and crafts gifts. The question to the child’s parent about the state of their motor skill development is almost important as the gift itself. Some parents might burst into tears if you aggressively ask if their child can tie their shoes, because it is a source of sadness for them. A good way to approach this for a parent is to simply suggest the type of gift and relevant activities associated with the purchase and ask if it is appropriate or if the child would prefer something else that is soft and cuddly. Children with special needs spend most of their time struggling in school, navigating wheel chairs through complicated busy hallways or frustrated with themselves because of delays in communication. Help make the holidays fun for them and don’t worry so much about “learning toys” simply focus on what would make the child smile.

Think About Safety At All Times

This should go without saying but you should consider the safety of the child with any particular special needs toy you are planning to purchase because ultimately that is one of the most important areas of concern. If the child gets frustrated with the toy and decides to send it airborne you have to make sure it won’t hurt anybody else in the room or even themselves. In order to sometimes understand completely which type of toy to get you have to understand the frustration levels of the child and try to anticipate how they might react with that specific toy. Purchasing the right toy for a child with special needs is not like purchasing a toy for a typical needs child. Much more thought and compassion needs to go into that toy for a variety of reasons.

Don’t stress yourself out thinking about what type of gift is best for the child.

Do some research online and communicate with the parents prior to any purchase because it could be the difference between that child really enjoying their special holiday gift and not using it at all.

Dawn Grosvenor, mother of a daughter who demonstrated signs of autism after three years of age. After formally being diagnosed as PDD-NOS, recognized as an Autism Spectrum Disorder, a new search for autism treatments, materials, classes and teachers ensued. Dawn’s search for appropriate materials and activities went from frustration to passion. HOPELights special needs resource serves the purpose of developing and recommending such materials and activities for special needs children that motivate and educate through positive, holistic stimuli.
Posted in autism, cerebral palsy, Down syndrome, Holiday, Holiday, Holiday, Holiday, Hopelights, special needs children, spina bifida | Tagged , , , , , , , , | 13 Comments

Miracles of Hope on Facebook

Posted on November 7, 2010 by Hopelight

 

What started as an item on my checklist for the company….a Facebook page…has now turned into something completely HOPELights different than what I could have ever imagined. Like most companies we face the daunting task of getting our name out there, our message, our vision and our product in front of millions of people on the world wide web, competing against a constant array of fully flushed marketing budgets by companies that have billion dollar spends. I went to work on creating the page and paused….

Was this Facebook page going to be like every other company? What purpose does it serve? Just another way to litter the Facebook walls of potential customers with advertising?

No way. That was not me and that is not what HOPELights stands for.

I started thinking about my own life, my own journey and identified all the things that I need more of….

Hope. Compassion. Faith. Peace. Gratitude. Courage.

Before I knew it, I was on a mission.  A mission to communicate with my own heart and others who needed a boost in a life that can be challenging, overwhelming and sometimes a bit lonely.  The Facebook “walls” of parents that have children with special needs are littered with constant stories of bullying, negative events and reminders that science has not yet caught up with the needs of children in regards to medicine, cures or the roar of vaccine debates.  Where was hope?  Where was the balance?  If I could find a way to sprinkle a little goodness in the world, a few moments of thinking “differently” would it be of value?

I happily report that the answer is “Yes”.  It is of value. 

The Facebook project is now reaching parents who have lost a child to illness and in mourning.  It is reaching grandparents and adults who were born with special needs and have overcome tremendous obstacles in their lives. 

It has reached a mother who felt all alone. 

It has reached a Father who felt like the messages could melt a heart of stone.  It has woven through lonely rooms in the middle of the night and provided kindred friendship to a sister who felt helpless on how to help her nephew.  Most of these people will never be a customer of ours, nor does it matter. 

We discovered miracles of inspiration.   We found that suddenly those who felt hopeless were now comforting others.  We found words of encouragement from surprising places.  We found humanity thriving. 

We discovered miracles of hope.   I have received a thousand blessings of joy in knowing that despite all the wrong in the world, despite the obstacles, despite the churn of business we have found a small space in which we can give back to humanity and make this a brighter world for you and for me.

Posted in Hopelights, special needs children | Tagged , | 9 Comments

Patience with the World not made for Special Needs

Posted on October 12, 2010 by Hopelight

Being Patient with the World

I used to carry a large sack on my shoulders. I put it down one day. Sometimes, when I am not paying attention, I realize I’ve picked it back up and have walked up another steep hill. I get better all the time, but I am still working on it.

The burden

What made me put down the sack? A life-changing conversation with Dr. Jane Goodall. I used to work for a science museum and I was graciously invited to sit with a hand-picked group of teachers that served at-risk students in a very poor part of town. I sat just to the right of Dr. Jane Goodall. She asked each one of us, starting on her left, what was the most important thing to them to accomplish professionally in their lives.

At the time, my daughter was freshly diagnosed with PDD-NOS Autism Spectrum Disorder. I had not accepted this diagnosis and was in the middle of my rage stage. I took it out on innocent donors at the museum, driving up contributions to single-handedly save the world by creating new programs that reach students who would otherwise never be exposed to learning opportunities. The fire in my belly came from my own childhood as well as my daughter’s predicament.

As each person spoke around the table, each teacher spoke of their compassion for children and Dr. Jane Goodall lovingly responded with gracious words of wisdom and insight to each person. I was the only non-teacher sitting in the group. At last it was my turn. My food in front of me sat untouched and now cold. I was building up for “my turn” to speak my heart to her and the table.

As her beautiful gaze shifted to stare me down, eye to eye, a rolling, tumbling geyser of passion sprung forth. I spent 5 minutes lecturing the table of the insensitivity of the world to those who have less, those who are different, and those who did not fit within the small box of social structure. My eyes welled with tears, as I still feel this way. This is the sack I sometimes carry.

After I finished there was 30 seconds of silence, which felt like 5 minutes to me. She took her tiny petite hand and gently laid it on top of my Viking clenched fist that was firmly on the table, I had not even realized I was clutched up like that. She simply said, “Dawn” (wow I thought, she remembered my name) did you know that most of what I do now is educate the very wealthiest in the world? My travels now include the upper echelon and the most powerful. I would rather be in the jungle making a difference. But I have learned something very special. I need to educate the world around me in order to make the kind of lasting differences for all children, for all animals, for the progress humanity deserves.

Let go of your anger, Dawn, and transform that passion into helping others understand. If it means the lady at the counter in the grocery store who doesn’t approve of something, a trust-fund girl who is lost in her own world or a senator far removed from the challenges you fight every day.

Educate. Only by speaking with softness and hope can your heart reach another. Lay down your sword you have carried all these years. Open your heart and believe that humanity has the capacity to learn.

I laid my sack down, of all the frustration and anger at the society, and had a new perspective. This was 8 years ago.
Just last week, my schedule, the bills, the business, the list of things to do, my daughter’s special needs teachers got to me and I tumbled over a few rocks and boulders with my large sack that I realized I had picked up again and had been carrying for a few miles.

I laid my sack down again. Then I forgave myself for picking up that sack, when I know good and well that I should be over it by now and never pick up.

So if you should frustrated, mad or angry with the world around you that doesn’t respect your differences, your suffering, your profound pain and anxiety in regards to caring for a loved one with special needs…. Remember this is a heavy sack you carry. Maybe you should try putting it down now and again. If you keep trying, maybe you might lose it someday so it can never be found.

Here is to having patience with the world. Thank you Dr. Jane Goodall. Who ever thought that a woman who worked with chimpanzees in Africa would teach me how to patient with the world?

Keep your heart open.  HOPELights♥

Posted in Hopelights | Tagged | 11 Comments

Child 1st, Diagnosis 2nd – Thanks Oklahoma.

Posted on October 6, 2010 by Hopelight

It is not a label; there is a child in there!

A woman in Oklahoma wrote to me last night and asked me to take a look at one of our ads that we have running out there in Cyberspace.  Unfortunately, I had used “blah blah blah for the Down syndrome child.”  Now me, of all people, know that this basic 101 mom-speak error for children with special needs.  I myself have a daughter with autism and her best friend in the world is a little girl that has Down syndrome.  For any of them, especially my baby girl (she is 13 now but still my baby) I valiantly defend with my mighty sword of words and written pen to the universe.   It is hard for me to believe that such an error occurred.

Sweet Child with Down SyndromeThis got me thinking about social networking, the speed of communication and the brackets society wants us all to fit into so nicely.  Deep thoughts.  Due to the restrictions that google or other advertising mediums place upon the character limit in ads, you are restricted to 25 characters or less in some places, 70 characters in others, so on and so forth.  I am not very good at that and neither is any member on my team.

How could you fit into 70 characters or less the challenges a child faces everyday and what you hope to help on such plights?  How could you fit into 25 characters or less that yes, you understand the pain of raising any child who has special needs and Love for the child no labels for down syndrome pleaseonce more that they are not a label in some category placed upon a shelf with other similar objects?  We are people.  We love our children.  There is no magic bullet to solve any of our issues, from the child who has cerebral palsy and cannot walk to the child who’s life expectancy may be shorter than our own…. To the child with autism that when they grow up and God calls you home, cannot defend themselves against this world we live in?

Therefore, thank you for reminding me what I already know and forgot because of the frustration electronic mediums impose when trying to be creative and run advertising.  It is a child first, diagnosis 2nd. 
Thank you Oklahoma!

Posted in Down's Syndrome, Hopelights, special needs children | Tagged , , , , | 11 Comments

When I whine I make Lemonade!

Posted on September 24, 2010 by Hopelight

With autism I take lemons and make lemonade.I found this today…. It is so very true!
We get so caught up in our lives. The deadlines, the traffic, the demands of communication faster than a speeding bullet. Sometimes life will give you lemons. Today I made lemonade after reading this.

_________________________________________________________________________________________
When I Whine

Today upon a bus, I saw a lovely maid with golden hair;
I envied her – she seemed so gay – And oh, I wished I were so fair.

When suddenly she rose to leave, I saw her hobble down the aisle,
She had one foot and wore a crutch, But as she passed, a smile.

Oh, God, forgive me when I whine;
I have two feet – the world is mine.

And when I stopped to buy some sweets, The lad who served me had such charm;
He seemed to radiate good cheer, His manner was so kind and warm. I said, “It’s nice to deal with you,
Such courtesy I seldom find. ” He turned and said, “Oh, thank you, sir!” And I saw that he was blind.

Oh, God, forgive me when I whine;
I have two eyes – the world is mine.

Then, when walking down the street, I saw a child with eyes of blue.
He stood and watched the others play; It seemed he knew not what to do,
I stopped a moment, then I said: “Why don’t you join the others, dear?”
He looked ahead without a word, And then I knew; He could not hear.

Oh, God, forgive me when I whine;
I have two ears – the world is mine.
With feet to take me where I’d go,
With eyes to see the sunset’s glow,
With ears to hear what I should know:
I am blessed indeed, the world is mine!

 

Headed olemon autism make lemonade out of itut to make some lemonade
out of autism lemons.
.


Dawn

Posted in autism, Hopelights, special needs children | Tagged , | 2 Comments