Yes She Can

I am thrilled to announce that on November 27, 2013, Yes She Can Inc. became a non-profit corporation in the State of New York.   (In my blog post, “My New Baby”, I had talked about why I wanted to launch this venture.)

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I am also a little anxious.  As an MBA and professional marketer I have always (well, usually) created plans for launching any initiative.  I had to justify my spending, convince management and colleagues of the value, and build consensus and collaboration for execution.  Of course, at IBM, always accompanied with PowerPoints (version 1 through 17).

This time, I relied more on my marketer’s intuition and market timing.  And my own money.  Since our first business is a retail business the gift-giving season would likely represent 60 percent of sales, so I felt I needed to be up and running before Thanksgiving.  I am sure I have made some less than ideal decisions but I am learning on the job.  I am learning about retailing and about non-profits at the same time.  (I do need mentors if anyone wants to volunteer!)

So even before incorporation was certified, I put into motion the plans for Girl AGain, an American Girl resale boutique.   I searched for retail space – hoping to find a kind landlord who had empty space and would be willing to give me a short term lease for little or no money.  But that benefactor did not turn up.  I was connected by a agent to two women who were leasing from him 3000 square feet of space in a great location to open a “family spa”  called Sweet Heaven Spa.  I met the sisters for coffee and they were intrigued by my mission to employ young women with autism in an inclusion setting.  And of course they saw the alignment of American Girl with their target audience – girls, teens and their moms who want an affordable luxury.  So they agreed to rent to me a small interior room of 128 square feet to set up my Girl AGain boutique.

Sweet Heaven Spa has been under construction for several months and while the owners had hoped to open on Small Business Saturday, their permits from the town had not been issued yet.  (They are in the Harmon plaza at 157 South Central Ave. in Hartsdale, NY, across from Ethan Allan furniture.)

Meanwhile, I have been acquiring merchandise for the store through ads on Craig’s List, purchases on eBay,  purchases of new merchandise from American Girl and mostly through donation requests.  I have also purchased shelving from Ikea, plus bright pink area rugs and a pink chair selected by my daughter.

The beauty of used merchandise is that when it comes in, it needs work:  organizing the clothes by doll character and making sure all the pieces of the outfit are there; logging missing components so we can make a complete outfit later, cleaning the dolls, doing their hair, hanging up the clothes, pricing competitively, logging into an inventory system, creating content for the web and Facebook, displaying merchandise on the shelves, and more!  That means lots of jobs (micro tasks) and lots of teachable moments; and skill development that is transferable to other employers.

My mission is to have a large workforce, although it will be inefficient.  Many workers will only have stamina to work a few hours a day and will require breaks.  Others may only want to work behind the scenes while a few may be able to work in the boutique helping customers.   I will need to find a social service agency to work with to help build a training curriculum and provide job coaching.  This is critical to the non-profit mission of the business.   All revenue from the store will go back into buying more merchandise to enable more workers to work for minimum wage or higher.  Hopefully most employees will feel confident and skilled enough to then apply for positions at other specialty retailers (such as Build-A-Bear, The Gap, Legoland, or Tommy Hilfigger )

I have been trying to keep my daughter involved in all aspects:  we went to pick up some merchandise I found through my ad on Craig’s List and met the seller at another business that employs people with autism, Roses for Autism.  (They got a new customer).  She helped me at Ikea selecting furnishings for the boutique, and she has helped in identifying which doll outfits belong to which historical character.

By the way, many of my volunteers (soon to be employees) are walking encyclopedias of all things American Girl – this is very useful since many things we acquire have been retired and are not in current catalogs to compare.  We did discover a great wiki and two of our volunteers are quite adept at online research – they just want to verify what is already in their own knowledge bank.

I have also been helped by a wonderful graphic designer, Kat Nemec, who kindly volunteered to create the logos for both Yes She Can Inc.  and Girl AGain.

GirlAGain_Process_Color[2]I didn’t to this alone.  I am grateful to a lawyer friend, Dan, who volunteered to advise me on my articles of incorporation, and to my Assemblywoman Amy Paulin who gave push to NY State Division of Corporations (they don’t know what expedite means)  And especially to my former IBM colleague, Allan Friedman, and now board member of Yes She Can Inc., who has been my partner particularly investigating retailer business tools and is full of ideas; to my sister Pat who is also a board member in providing advice on non-profits; to all those people who have made donations of their beloved American Girl collections, to anyone who has helped publicize our mission; to Sweet Heaven Spa for sharing their space; to our “ladies who launch” volunteers; to our accountant Mindy; Howard at NYS Small Business Development Center. And even to Pro Bono Partnership, who turned us down to help us but said come back later when we have a more comprehensive business plan.  And to my husband Paul who has been so supportive, and even put up with the sprawl of merchandise filling our garage and kitchen.  (note to self: next time buy  a house with a basement.)

So, if you want to volunteer your legal expertise, retail expertise, database expertise, fundraising expertise, job coaching expertise, financial planning expertise, or American Girl expertise – or anything else, please contact me.

And share our Facebook page: https://www.facebook.com/GirlAgainBoutique

more to come….

Meshugenah and a Mitzvah

The ups and downs of starting a non-profit business to employ women with autism

My Perserverations, a blog by Marjorie Madfis

On Monday November 18 I was so excited to submit my certificate of incorporation to New York State (they don’t offer online filing and only offered fax or mail as the way to file).  So, since I don’t have a fax machine, my husband faxed it from his office along with a form that included my credit card information and an authorization for an additional charge to cover a 24 hour turn around.  That meant I should have received my approval on Tuesday.  But Tuesday came and went and so did Wednesday.  I called Wednesday at 4:15 pm and was told by a clerk that they don’t take calls after 4:15 pm – call back tomorrow.  (Starting to sound like the Wizard of Oz).    So I call first thing Thursday morning and after several transfers learned that they rejected my filing because there was no backer.  I ask what is…

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Meshugenah and a Mitzvah

On Monday November 18 I was so excited to submit my certificate of incorporation to New York State (they don’t offer online filing and only offered fax or mail as the way to file).  So, since I don’t have a fax machine, my husband faxed it from his office along with a form that included my credit card information and an authorization for an additional charge to cover a 24 hour turn around.  That meant I should have received my approval on Tuesday.  But Tuesday came and went and so did Wednesday.  I called Wednesday at 4:15 pm and was told by a clerk that they don’t take calls after 4:15 pm – call back tomorrow.  (Starting to sound like the Wizard of Oz).    So I call first thing Thursday morning and after several transfers learned that they rejected my filing because there was no backer.  I ask what is a backer, and they can’t explain.  But they did say they sent it back to me by mail.  WHAT?  I ask.  You couldn’t call me?  “We can’t call everyone”.  Right, but I specifically was paying to have my application expedited.  Doesn’t that qualify for a phone call?

So Thursday afternoon I received in the mail a letter from the New York Department of State Division of Corporations telling me that my expedited handling request for incorporation was being returned (by snail mail) because it needed a “backer” (which I learned is a one page sheet with my name and address and the company name on it).  

Why do they need this information on a 4th piece of paper since it was at the bottom of the 3rd page?  I would think Cesar Perales, Secretary of State, does not want to impede entrepreneurs from job creation, does he?  Maybe New York State is just too bureaucratic to deal with and I should instead go to Delaware, as recommended, to incorporate?

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I feel like punishing NY State and not giving them my business…. but I know that would have no impact.  What can I say about this process but, MESHUGENAH

So now I am looking for a fax machine.

In the meantime, this morning I received an email from a woman I don’t know.  She must have seen my flyer promoting my new venture, Girl AGain, an American Girl resale boutique.

And here is what the email said:

“I was recently forwarded information about your American Girl boutique. Both my girls have since outgrown their American girl dolls (sniff sniff…), so I shared with them your request for donations, and asked if they would like to part with some of there stuff. They both agreed and then my-soon-to-be bat-mitzvahed 12 year old thought that she would like to help you for her mitzvah project (community service is part of the bat-mitzvah process). Both my husband and I are OT’s who work with children with disabilities. I have been working with children with ASD for over 30 years (started as a 13 year old volunteer at at camp for children with special needs), and I think your concept/idea/business model is such a fantastic idea, and it so important that this need be addressed.

Anyway, my daughter has always enjoyed coming to work with us and helping the students in the class/therapy gym, so I think helping you to raise awareness about creating and identifying employment opportunities for people with disabilities, as well as soliciting donations, has made a connection and is therefore meaningful to her as well.

Please let me know if you have any other ideas of how she could help. Otherwise we will just use the information from the flyers, your blog, etc.. We will try to make it to your opening day 11/29,
Thank you and good luck with your new venture! “

Thank you God for people who want to do a mitzvah.

Ladies who launch

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Today I hosted my first workshop with young women and their moms.  My mission was to introduce them to the business concept of the American Girl resale boutique, see what kinds of work they wanted to do, and keep them enthusiastic about the new business.  First we had lunch and then we discussed what the business is all about, what work needs to be done, and who will do it.

I prepared a 3 page check list of tasks and asked both the girls and moms to fill it out.  We went line by line discussing what each task meant such as quality assessment, competitive pricing, and messaging.    We talked about how each item that comes from a purchase or a donation needs to be looked over to see what condition it is in:  brand new, mint, excellent used, good, or fair.  We discussed that the condition was one component of pricing.  We talked about needing to know what other people who sold this merchandise were pricing their items for so that we would be fair in pricing ours – otherwise, customers might not want to buy from us.  And we discussed what messaging is all about – telling customers why they would want to shop at our boutique and what makes it different than other places where they could buy American Girl dolls and accessories.

I have never run a retail operation so I am learning on the job.  I have also never actually instructed anyone with ASD other than my daughter, so I am learning what each volunteer (and future employee) can do and how much I need to adjust my language to explain what needs to be done.  I kept checking in with the moms to see if their daughters were getting what I was saying.

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After our work session came the fun part:  playing with the historical dolls that I already collected, doing their hair, making sure they had the right outfits on, and rearranging the Bitty Babies in the crib.

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So much to do, so little time left.  But I am thrilled that I have so many people committed to making this a success.

Thanks to Molly and her mom Barbara, Becky and her mom Sheryl, Cici and her mom Shera, and Izzie.  Thanks to Izzie’s dad, Paul, for helping in the store fixture acquisition at Ikea, and for his help in putting it all together.

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The prequel: autistics in the workforce

Here is Marjorie’s primer on the status of employment for people with autism:

Autism is the fastest growing disability in the nation, with 1 in 88 children under 8 being diagnosed with this disability.  The year my daughter was diagnosed, 1998, the rate was 1 in 500.  Girls represent about 25% of those diagnosed with autism.

At the time when our family became involved with autism advocacy organizations in 1998, their missions had been about generating awareness of the disorder, providing information to families affected, or funding research to determine the cause(s) and identify effective treatments. 

Cute kids with no eye contact served as poster children for the disorder.  But those cute kids are now growing up and aging out of the school system. And they still have autism.  So now that there is a significant cohort entering adulthood, there is a new focus on employment for people with autism.

Historically, most people with developmental disabilities were sent to “day hab” programs after high school where they focused on development of activities of daily living and recreation. These adults were not part of the work force, even if they had a particular skill that was useful for a business.   At the same time, there are people with autism who have the intellectual ability to perform in jobs (often technical ones) but are significantly challenged by the social requirements of the workplace.

Amazingly, about 80% of adults with developmental disabilities are unemployed today.

Since the effective implementation of the educational law IDEA in the 1990s, many young adults are now leaving high school with more skills, and with more experience in being included with typical peers in at least a portion of their day.  High school special education programs now are developing transition programs to help those students be better prepared to enter the workforce or to go on to vocational programs.  Social service agencies and government agencies are also beginning to step up to this need since the population of people with autism who will be exiting high school in the next 10 years is growing rapidly.

I am a member of the Westchester County Autism Advisory Council, a committee of parents, professionals, and service agencies that advise the county Department of Community Mental Health on issues pertaining to the needs of those with autism.  This summer the council hosted a forum on employment for people on the autism spectrum.

Many young adults with autism and Asperger syndrome have the potential to work independently after some initial job coaching and social skill training,  But many others will need ongoing job coaching and supported employment opportunities to be successful.   There are few traditional employers who are willing to hire people with disabilities – especially until they can prove themselves to produce at the level of a “neuro-typical” employee.

One of the primary challenges for people with autism to function well in a job is the social demands of the work place:  interviewing for jobs, taking direction from managers, collaborating with peers, engaging in social banter with office mates, and so on.  Recently I have met several young adults who have the subject matter expertise to perform a job but told me they were not been able to maintain steady employment due to their lack of social skills.  They misunderstand or misinterpret communications and non-verbal cues from managers and co-workers that get them in trouble.

Given the lack of opportunities with established businesses, there is now a trend in parent-initiated social enterprises such as farms, software testing services, computer games development, cleaning services, laundry services and car washes.  These business models take the approach of playing to the strengths of a person with autism, for example, attention to detail, committed to rules, ability to focus, interest in repetition, ability to find patterns, loyalty.

Autism Speaks has recently held a few town hall events highlighting entrepreneurs and agencies that are addressing this need as well.

Rather than focus on the autistic worker’s challenges in the conventional work environment, a number of entrepreneurs are looking at the unique attributes of autism that can be an advantage to certain work.  One area of strength is attention to detail including the ability to focus on small differences and ability to maintain that focus in completing repetitive tasks.  A number of IT software businesses have been created to take advantage of those strengths.
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The New York Times published a wonderful article called The Autism Advantage, which highlighted Specialisterne.
http://www.nytimes.com/2012/12/02/magazine/the-autism-advantage.html?pagewanted=all

Here are a few entrepreneurial businesses that see autism as an advantage in IT:

Specialisterne
This organization was founded in Denmark and has since established a base in Delaware.  This fall a branch opened in the Bronx, NY, under the volunteer leadership of Mark Grein.

Aspiretech
Based in Chicago, was started in 2008 by parents of a young man on the autism specturm. Brenda and Moshe Weitzberg set out to start up a business to provide adults with high-functioning autism with gainful employment opportunities that are commensurate with their skills and education. ‘Aspiritech leverages their exceptional talents and align those skills to the needs of the business community. The areas of software testing and QA services have proven to be a particularly good fit’

nonPareil Institute
Dan Selec and Gary Moore, two parents of teens with autism founded Nonpareil Institute in Plano, Texas, in 2008
nonPareil Institute is dedicated to providing technical training, employment and housing to individuals who have been diagnosed with autism spectrum disorder. We hope to one day be partially self-sustaining from the products our Crew build and market.
We envision ever-expanding programs beyond our current technology focus, and expanding our campus model around the world, which will allow a lifetime of sustainability, fulfillment and purpose for adults affected with autism spectrum disorder.

Recent NBC news feature

Ultra Testing
Founded in 2012 by Rajesh Anandan and Art Shectman, based in NYC, this business model uses the micro-tasking approach, breaking up tasks into small components to complete the assignment.  For clients who require a consistently high quality software testing service, ULTRA delivers superior results on-demand, on-spec, on-time, every time. We provide a rapidly scalable on-shore workforce of testers with deep technical expertise, paired up with seasoned project managers who work seamlessly with internal development and QA teams.
Press release about Elephant Ventures

Auticon
‘ auticon is the first company in Germany to exclusively recruit employees with autism as consultants in IT division.
auticon sees the large potential of people with autism: pattern recognition, precision, logical thinking and an affinity to search errors, rank among the outstanding skills of Asperger autistics. Our staff develops creative approaches to solve problems and thus efficiently complement our clients quality assurance.’
They recognize the need to provide job coaching to help their employees be successful.
job coaches http://auticon.de/glossary/job-coaches/

Exceptional Minds
California
Exceptional Minds is committed to creating a world in which individuals on the autism spectrum are recognized for their talents and abilities and can achieve their full potential. The mission is to provide young adults on the Autism Spectrum with customized instruction and hands on experience to earn a living in the fields of multi-media, computer animation and post production.
‘Exceptional Minds was started in 2011 by visionaries in the Hollywood and related industries to create a bridge between high school and the working world for young adults with autism. Since then, the vocational school has developed a full curriculum around the special needs of individuals living with autism spectrum disorders,and has gone on to become the first school of its kind to develop an industry accreditation program recognizing the technical proficiency of its students.’
 
More reading:

Autism Speaks town hall

Fortune

Calling all American Girls

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My daughter is a very loyal customer of American Girl.  She has 7 dolls plus their outfits, furniture and accessories.  For example, one doll has a horse and when she is ready to ride she is dressed in a red jacket, white jodhpurs, black boots and a riding helmet.  Another doll likes to go camping so she has a large platform tent.  Another one likes to go skiing, and has the entire ski outfit, plus skis, polls and boots.  After she broke her leg and got a cast put on, she got wheeled around in a wheel chair.

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It has been my daughter’s dream to work at her favorite store, American Girl.  (Actually it is her second choice since her real ambition is to sing at the Disney World Magic Kingdom performance on the stage at the castle).  So, our first business under my new non-profit will be an American Girl resale shop.  This has been something I had been thinking about for 5 years.

From a demand side, I know this brand has loyal customers (ages 3 to 12) and that since the price points of the new merchandise are relatively high, there is demand for more affordable but authentic merchandise.  From the supply side, there are 80,000 to 100,000 results on eBay on any given day for “American Girl”, let alone Craig’s List.  Then there are attics and basements all over the US where college girls who have left home have their stash.

The beauty of this business concept is in the employment opportunities.  There are so many jobs that need to be done.  “Gently used” merchandise needs to be cleaned or repaired; the doll clothes and furniture need to be tagged by doll (Samantha’s dress, Molly’s bed, Kaya’s horse); merchandise needs to be priced; outfits need to be put on hangers.  Inventory needs to be documented.  Store displays need to be created. Customer data needs to be collected and organized. And then we need enthusiastic sales people who can demonstrate (aka play) with the product.

There are may job skills that can be taught, along with workplace social skills, and these can be transferable to other retail settings.  One day, after beginning her career at our resale shop, our employees could move on to work at The Gap, Claire’s or Build-A-Bear (or any other retailer).

Given that my employees won’t be the most efficient workers, our resale business will have even tighter margins.  That means I need to find space with really low overhead.  Retail lease space in Westchester County is going for something like $40 a square foot.  So for for a very small shop of 500 square feet that means a rent of $20,000!    After talking to lots of real estate brokers, I got a great tip.  One broker had just leased 3000 square feet for a spa for girls (yes, every 9 year old needs a good facial and mani-pedi).  He suggested I talk with the owner of the new business and see if she had any suggestions. 

The owners of Sweet Heaven Spa loved my concept and had a tiny 125 square foot room they would rent to me.  They saw the synergy between our businesses and appreciated the mission of our venture.  They want to open the day after Thanksgiving!

Today I started working on my certificate of incorporation as a not-for-profit corporation.  I don’t speak legal but I thought I could fill out the form and file it myself, saving $350.  (I need to be very efficient on how I spend money, since I don’t have any.)  But then I got to the last question about seeking tax exempt status.  Call in the lawyers (still looking for pro bono).

It will get done, but if you wish to donate gently used American Girl dolls, clothes, furniture, accessories, books, and original boxes, you can still do that and I will send you a receipt for your tax filings once I get the corporation ID,  I will also pay the cost of shipping if you make an in-kind donation. 

Download this donation form from Google Drive:  Donation form  

and let me know if you want to donate – I will arrange to cover your shipment!

 

My new baby

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For the past 15 years I have been an active member in the autism community, ever since my daughter was diagnosed with PDD-NOS.   From the beginning, I have been a connector for many,  a provider of information,  a supporter, cheerleader and advocate,  a founder of the White Plains School District Committee on Special Needs, a member of the Pleasantville SEPTA,  a founding member of  the Westchester County Advisory Council on Autism, a passionate promoter for inclusion, a fundraiser for autism research, and a friend.

In July, after 17 years in digital marketing at IBM (yes, I was there at the beginning of digital marketing), and 15 years as a professional marketer before that, I was “retired”.   Like hundreds of other IBMers (Xers), I have been seeking another corporate position where I would apply my expertise in digital and social marketing (see me on LinkedIn)

But I am drawn to what I have been interested in doing now for the past 5 years – something to benefit our transitioning teens and young adults as their cohort enters the potential workforce.  I had been inspired by several other parents who have started businesses:  Debbie Hillibrand’s annual forum at UJA had featured several including Aspiritech, Roses for Autism, and Words bookstore.  This summer I was contacted by Mark Grein who is volunteering his time to get Specialisterne up and running in The Bronx, and then I attended the Autism Speaks town hall where I heard several entrepreneurs talk about their ventures:  Rising Tide car wash, and Extraordinary Ventures  I also met Stella there who started Spectrum Designs.

So, I thought, this is my time to start a non profit venture specifically focused on employment for females with autism and other developmental disabilities.  The first initiative will be a specialty retail store in a category that is near and dear to my daughter’s heart as well as other girls like her.  She is my inspiration.  I had been thinking about this for five years!

The non-profit organization mission is:

  • to create employment for teen girls in transition (from school to work) and women with autism and other developmental disorders

  • to engage employees in a product or service category in which they are knowledgeable and passionate about, and to use their positive traits to run a successful business

  • to teach skills to enable employees to move to other jobs in retail, with or without supports

  • to create a model of a business that can be replicated for other locations, by other individuals or organizations

  • to fund job coaching, job training, and job social skills development

I have never started a business, other than my own consulting business which I had for 5 years prior to joining IBM.  So I am reaching out to my network for help, advice, and support.

I will be blogging about this experience, sharing what I learn, and letting you know when and how you might be able to lend your expertise to help realize this mission…. because you too may want to -or need to- do this too, one day.

The Happiest Place on Earth – is that for everyone?

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As a mother of a 17 year old girl with Autism and a loyal customer of Disney, I have been reading many of the blogs and comments about the recently announced changes to the Disney theme parks policy regarding “special” access for people with disabilities.

Much of the conversation is around what “typical” (ie non-disabled) people think or feel.  It is unfortunate that so many non-disabled people feel that they are being put out or even cheated because of a policy that really does not have any negative impact on them.  Just think about it: if all people with disabilities who had been receiving special assistance were to join the main line only one of two things would happen:  the wait line would get longer for all, and it would get less comfortable for all (as a developmentally disabled person may actually have a meltdown right next to you!)

Part 1:  The impact on Disney’s non-disabled customers:
We took our daughter Rose* to Disney World for the first time when she was 6.  We made it just a day trip from Tampa.  I had heard about a special needs access pass but wasn’t sure how to obtain one.  And besides, I was still at the phase of thinking ‘one more speech therapy session and she will be all better’ so who needs a special pass? (Admit it, some of you also had that silly thinking too).  We paid full price for our tickets and were able to go on a few rides – we took lots of breaks for sensory overload recovery.  It wasn’t all that crowded when we went but we still had a few lines.  While waiting I was thinking, ‘Wow, this is amazing, look at how well she is doing’.  Amazingly,  I was actually feeling joy in the happiest place on earth. For a few minutes.  Then the mom next to us asked her daughter to stand still in line.  The girl responded, “but that girl isn’t standing still”  and the mom glared at me and said “there is always one in every crowd”.   Ouch.  (Eleven years later and I still feel the punch in my gut).  At 6 years old, my daughter, with little speech, could not have even responded to me the way her daughter did to her mother.  I wish I had said to her:  actually there are 1 in 500 kids her age …. (that was the stat when Rose was diagnosed with Autism in 1998).

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I missed the opportunity that year to educate other parents at DisneyWorld.  The following year we went back, this time for 2 days, and were able to obtain the special needs access pass by bringing a signed note from Rose’s doctor describing her disability.   This time I saw the marketing opportunity and so had printed cards to hand out that said:  Why is this child behaving this way? with an explanation of autism, and a suggestion that they help with a donation to National Alliance for Autism Research (now Autism Speaks) including phone number and website.  With the special access pass we were able to avoid long waits by entering at the Fast Pass entrance along with other people who had Fast Passes.   I also made a behavior chart and awarded Rose stickers for 15 minute time blocks, and she could then “redeem” the stickers for Disney merchandise in the hundreds of gift shops at the park.  Of course there were still challenging moments but overall it was a wonderful experience.

We continued to go to DisneyWorld almost every April with a 2-3 night stay, and the rest of our vacation week was on the Florida gulf at a family home.  We requested and used the special access pass for all our visits.  This did not mean there were not behavior challenges  (it is not a pretty scene when your 12 year old child has a violent meltdown, especially in public.)  But for a few days, we were able to enjoy an experience as close to what a “typical” family was having.   Yet, I don’t think any typical family would want to trade places with us for those 2 days.  And I know they would never trade experiences for the other 363 days of the year.

I don’t understand why people who have advantages begrudge those who need extra support to access what typical people can do on their own.  When I am in the supermarket checkout line and another customer pulls out food stamps to pay, I don’t say “lucky them, I wish I had food stamps so the government can help me buy food”.  Rather, I think, thank goodness I have the skills, education, and good fortune to be able to have a job and afford to pay for my food, and I am lucky to live in a country where we can accommodate those who do not.

The Disney parks special access pass has nothing to do with people who are not disabled.  We families who live with disabilities do not owe an explanation or need to apologize or defend the need for the pass.

Part 2:  Disney as a business and their commitment to their value proposition:  The Happiest Place on Earth.
Is that value proposition only for a select group of people?  Are Disney parks only targeting people who are able-bodied and neuro-typical?  or do they mean to make their parks the happiest place on earth for everybody?  As an experienced marketer myself, I am sure Disney, who is one of the best marketers in the world, knows that the largest minority group in the world are people with disabilities  (even the UN has acknowledged this). And I am sure Disney does not want to miss out on that market segment.

Many children with developmental disabilities are very brand loyal to Disney.  And they grow up to be loyal adults.  My guess is that people with disabilities who are Disney customers actually spend more per capita with Disney both in their youth and through adulthood compared to the non-disabled market segment.  Disney marketers should be calculating the life-time value of their customers.

So I decided to look at our own lifetime expenditure.  The Disney properties in our collection cover the entire Disney empire:  Mickey and the classics, all princesses, TV shows (Phineas and Ferb, Hannah Montana, etc), Disney Movies (High School Musical, Camp Rock, etc), Disney Radio, Disney TV,  Disney theme park merchandise, Broadway, books, magazines, etc.

I tried to take inventory and found for the first 17 years of Rose’s life she has been worth nearly $20,000 to Disney!!!  My guess is that she will be worth about the same in the next 17 years and forever (assuming we continue to go to the park.)  If we don’t go to the parks anymore I would cut our value for the next 17 years to about $5000, or only 25% of what we could be worth.

Here’s the breakdown of our Disney expenditures by Rose’s family 1996-2013

disney moviesDisney videos = 21 x $12 each = $252
Disney books =  15 x $12 each = $180
Disney audio books = 6 x $15 each = $90
Disney CDs = 9 x $14 each = $126
Disney plush toys = 9 x $25 each = $225
Disney games, toys = 18 x  $20 each = $360
Disney figurines = 42 x $2 each = $84
Disney pajamas, t shirts, hats = 10 x $25 each = $250 Disney accessories  = 11 x $20 each = $220 Disney movies in theaters:  10 (?)  x 2 x $11 each  = $220
Disney Broadway: 5 x 3 x $100 ea = $1500
Disney Channel portion of our cable subscription = ?  (it is the ONLY channel she watches!)

Disney park passes = 3 people x 10 visits x 2.5 days = $6750
Disney hotels = 15 nights x $380 each = $5700
Disney food at parks, hotels, Downtown Disney:  25 visits x 3 x $30 = $2250
Disney character meals, Bibbity boppity boutique = $500
The grand total: a very conservative total of  $18,707

Frankly, for me 10 visits were enough, but when you have a child with limited skills and interests, and with a career ambition to perform at the 3 pm show at Cinderella’s castle, then our family continues to make that “investment” in Disney.  I expect Disney to make the same investment in their lifetime loyal customer, and provide her the assistance she needs so she can keep spending money with Disney.

Related blogs and articles

On Parenting, The Washington Post

Cafe Mom: The Stir

Yahoo : Disney World’s Message to the Disabled: Wait in Line

In training: A lesson learned from a train ride

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Guilt. And pride.  That is how I am feeling now.  But yesterday it was panic, fear, and guilt, fueled by a few  imaginary voices, like:  “I told you so”.

In September my daughter started to take the train from the town where she goes to school, to a town a short ride away.  I thought this was a perfect opportunity for independence and safe “travel training”.  She loved it and was committed to our transitions check-in routine:  She programed her iPhone with alarms for each call to me:  leaving the library, arriving at the train station, on the train, and arriving at the therapist office.  Things worked like clockwork every week.  Until the other day.

I got a call saying she was on the train.  “Isn’t that early?” I asked.  “I guess it came early today.”  I am not familiar with MetroNorth being early, so I don’t know why I did not leap into action (hence guilt).  She called me again on my cell but I did not pick up.  She then called the house phone and I did pick up  (yay for persistence!)

“I’m on the wrong train.  Help.  What do I do?”  She said she realized this when “a voice I heard” said this is the express train to Grand Central, next stop is ….  I instructed her to get off in at the next stop and wait for me.  (She took the initiate to call her therapist to say she would be late!! Yay again.)

But I had a mind melt – I miscalculated how much time I needed to get to the train station to meet her so I was not rushing.  Once in the car it dawned on me of my huge mistake.  I tried to get to the station as fast as possible and called her cell at a stop light..  I didn’t have my blue tooth on.  A man picked up her phone. PANIC.  “This is the conductor, I just found this phone on the seat.  I am heading to Grand Central, I can leave it there.”  Light changed.  Had to hang up.  Panicking about how to reach her with no cell phone. Police?  MetroNorth?  Should I pull over or just keep driving?

Getting to the train station is one thing, getting into the train station is another.  The traffic pattern is so confusing and I missed the entrance, had to circle around, finally got to the front but where to put the car?  I circled the taxi area and they all started to honk at me.  I opened the window and screamed HEEEELLLLLP.  No one noticed.  Finally a police car.  I said “I need help. I have an autistic daughter who I think is lost here.”   “Don’t panic, park in this no-parking spot.  She must be capable if she can take the train. What is she wearing.”

I raced into the station, started screaming her name, not response.  Finally go to the ticket waiting area in a glassed in section between the tracks.  There I heard “Mom?”  Race to embrace.  Safe.  She was hot, and said she had cried  (who wouldn’t?).

She was next to the ticketing window (yes they still have one in the larger stations, thank God!).  And the women behind the glass called me over.  She said she tried to reach me.  I missed her call as I was so busy trying to find the police phone number and misdialing while driving.

But thanks to an  “Arthur” episode, Izzie knew to stay right where she was and wait for me. And Marie had already reached the conductor about Izzie’s phone.  We made arrangements to meet the conductor on his return trip, on the platform as he passed by an hour later.

Leaving the station we saw the policeman and thanked him.  Then called the therapist to let her know all’s well but we won’t make it.  Izzie deserved a big treat so we went to her favorite restaurant, and got ice cream and cake – before dinner, gasp!

I told her she did everything right  given the situation.  She called me.  She called the therapist,  She got off the train.  She went to the ticket counter for help.  She stayed in one place.

Back at home I called the police and asked about “registration” for her.  We all put in the local police phone number into our cell phones, and I added the MetroNorth number too.

She made a comment about not wanting to take the train again.  So, since she is taking a journalism class, I suggested she write about her experience.  To get her started I interviewed her and made an outline of each step that happened.  She needs to process this and see how amazing and resourceful she was.  She needs to get her confidence back. This was a huge lesson for both of us.  I learned how capable she is and I hope she learned that too.  As Dory said to Marlin, Nemo would not have any experiences in life if Marlin tried to protect him from life.

There will always be memories of scarey things:  I still remember at age 5 being stuck in between the two doors in a small hall entrance to an apartment building – I could not open either the door to the outside or the locked door to the lobby.  I remember at 12 leaving my purse on the local bus and my father driving me trying to chase down the bus through the city of Newton. But both were relatively safe settings.

Even though this “worked out” ,of course in my head will always be:  what if it didn’t work out?  What if someone took her?  It did happen to a friend of hers.  Can I still let her take the train?  On one hand, when people start talking to her, they will realize that ‘something is up’ with her and perhaps be more helpful, or perhaps take advantage of her.  How will I know?

Please share your learning experiences in independence.

I wanted to acknowledge the help of the Metro North staff so I tweeted last night:

marjorie_m: Big THANKS to Maria at [location] ticket and conductor John @MetroNorthTweet for helping my daughter with #autism today #hero 10:08pm, Apr 09 from HootSuite

And this morning they responded:
MetroNorthTweet: @marjorie_m Thank you for sharing – we will be sure to pass this along! 5:49am, Apr 10 from Web

Meet me on the dance floor

Just the other day I was at a meeting and I introduced myself to someone who then said “Oh, I know you, I get great information from you!”

I have always been a networker, long before the internet and email, and way before social media made it popular and easy. I like connecting people, and I like sharing information that I think will be valuable to someone else.  I don’t ask for anything in return.  (although flowers and chocolates are always appreciated).

Now I am asking you for something.    I want to meet you all in person.  I know I have never met some of you who are receive emails, follow me on Facebook or Twitter or read my blog, and who have received relevant information from me about autism, other disabilities and special needs, special education, legal and financial issues, government programs and funding, recreation, services and community.   (And I do provide an editorial service – I don’t send you everything that shows up in my email in box.)

This is the ask:  we need your help to raise funds for autism research.  and I want you to participate – in person or virtually.

One way to fund raise that is to have a lavish dinner and ask people to spend $500 per person.  Another way is to have a low cost event where most of the money goes to the cause, many people can participate, and at the same time have a social experience. This approach requires lots of participation from a large community.  Well guess what, Allison Singer, president of Autism Science Foundation, has arranged a fabulous event for our community – it is a Zumbia party.  It won’t cost you a lot to participate, you get to socialize, and best, you get to exercise more than your mouth!

YOU are part of our community.  Even if Autism is not your specific “special need” you are still part of our network.  We need you.  And I need to meet you.

So join us for Fun. Fitness. Fundraising. Zumba Mania for autism research
Saturday, April 6  12:30 pm to 3 pm
An event open to all:  any ability, shape, size, experience, age, gender.  It’s all for a good cause.

and you get a FREE water bottle or a tee shirt when you show up!

Register here for Autism Science Foundation ZUMBA-Mania:  http://asfzumbamania.eventbrite.com/#

Dance2BFit
656 Van Ranst Place
Mamaroneck, NY  (Westchester County)

Learn more about Zumba at Dance2BEFit
Easy to get to from Rt 95, the Merritt Parkway, the Hutchinson Parkway
OR  you can take the train from Grand Central!

come in comfortable clothes for dancing.

More on Facebook here:  http://www.facebook.com/events/129486370561087/

Share with your network on Facebook and Twitter: (copy and paste)

Fun, fitness, fundraising. Join #Zumba Mania on April 6 in Mamaroneck NY to support #autism research http://ow.ly/i0cNX

PS, even if you can’t come,
please make a donation
to support our cause.  Thanks!
http://asfzumbamania.eventbrite.com/#