Tag Archives: jobs

Marcus talks about jobs, old and next

*originally posted 5/15/14 by Grown Ups & Downs

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After graduation Marcus had a job with the family business. When that opportunity changed, we discovered the labyrinth that is vocational services. Having not yet conquered that beast – we are still looking for the best…options. Here are Marcus’ thoughts on work and jobs ->


Mom: Let’s talk about work.

Marcus: Alright.

Mom: Where was your last job?

Marcus: Wright Printing

Mom: What did you do?

Marcus: Books.

Mom: What did you do with books?

Marcus: Spiral.

Mom: Spiral Binding?

Marcus: Yes.

Mom: Did you like it?

Marcus: Yup. Print shop – Like in Newsies.

Mom: What about older jobs. Did you have a job while you were in school?

Marcus: Bergen Mercy (hospital)

Mom: What did you do there?

Marcus: Two spoons, one fork.  That was a long time ago.

Mom: Do you have a job now? 

Marcus: Not right now.

Mom: What would you like as your next job?

Marcus: Drive a horse carriage…or make fortune cookies.

Mom: Where do you want to drive a horse carriage?

Marcus: Times Square

Mom: and Fortune Cookies? That’s new. What do you want to  put on fortune cookies?  

Marcus: (puts his hands across the air like writing) “No. I’m fine.”

Mom: Alrighty. Is there anything else you could do?

Marcus: Vending machines.

Mom: Good idea. You could fill vending machines. Marcus: Yes. Fill with snacks. Pause

Or be a cowboy. In Texas. Or Broadway director. 

Mom: What about your story, Black Day, would that be a good job, selling your books?

Marcus: Yup sell. And sign.

Mom: You’ll autograph your books.

Marcus: And guess what? People will buy the books. Mom: Good thinkin’

                                                                         To be continued…

WORK IS A REQUIRMENT

         ~~~ WORK, in this house, is a REQUIREMENT ~~~

The purpose of this post is not to debate sheltered workshops, but to give those who are interested, insight into the vocational process we have experienced with Josh.  His “resume” of sorts.  

These are OUR OPINIONS & OUR EXPERIENCES, nothing more and nothing less.

I will start by saying that Josh will never be allowed to stay home on a
daily basis unless he is sick.  I have to work, dad has to work, big brother has to work, AND Josh has to work.  Plain and simple, Josh has to work just like the rest of us.  Even if he were to be home all day long WITH a list of chores to be accomplish everyday, he still would go crazy (as would I).  His mind is very active and he needs something to occupy it.  So, work, in this house, is a requirement.    

You first must understand how the process works here in our state.  Every state is different.  Any educational or vocational program we design for Josh is paid for by the city that we live in until he turns 22 years old.  Josh only turned 19 yesterday, so we continue to work with the city to develop a program for Josh.  

In very simple terms, the city we live in PAYS for whatever his program will include and there are limited options available to us.  Once he turns 22, the state will take over responsibility of his vocational program, meaning they take over paying for it and those options will be limited as well, although they are currently in the very early stages of expanding the options that will be available to Josh in three years from now.  

The first job Josh had was as a volunteer at our local humane society.  He worked in the adoption center doing laundry, sweeping and mopping floors, and walking and playing with the dogs and sometimes the cats.  There was NO PAY involved for doing this job.  In fact, Josh needed supervision during the time he spent at the shelter and we, mom and dad, had to hire a job coach and pay for her services out of our pocket.  He was ready to work, had the skill set to do the work, but still needed the supervision to remain safe.  There was no program, at the City or State level, that would pay for a job coach.  Fortunately, we had the means to do this for Josh, but coming up with “extra” money is never easy for a middle class family.  Josh eventually became bored with that job and we ran into scheduling difficulties, so that job came to an end.  

Josh’s next job was assisting two custodians at a local elementary school at the end of the summer helping to get the school ready for the fall.  Another job that he did for NO PAY.  We again had to pay for a job coach to assist/supervise him.  

His next job was for a local zoo, also a volunteer position.  Again, NO PAY.   This job was through the school department, so his job coach was paid for by them, thankfully.  

That bring us up to date.  Josh currently works at a sheltered workshop
part-time.  He attends school in the morning and work in the afternoon.  HE LOVES IT AND HE GETS A PAYCHECK.  This is his first paying job and again, he loves it.  He is happy.  He is fulfilled.  He is proud.  He is gaining skills.  He is exhausted when he gets home.  It puts money in his pocket.

We consider everything Josh has done up until and including now, stepping stones, resume building.  Josh’s next step, which will begin June 9th, will be working with an enclave (a small group of people with disabilities with one job coach to assist/supervise/train).  Just another step towards independence.  With every job, Josh has learned valuable skills.  

We want our kids to be accepted and included by society, but sometimes we, their family, look beyond their WANTS and make decisions for them based on what we think is right.  It just might be time to start listening to our loved ones with ID/DD about what makes them happy.  We absolutely feel Josh is capable of making decisions about where he wants to work.  HE MADE THE CHOICE TO WORK FOR GOODWILL.  He has had other experiences to give him an idea of what the possibilities are.  He loves Goodwill and I am, quite frankly, becoming disgusted with the bad press I see about sheltered workshops. 
Before you jump on the bandwagon of negative perceptions, are you informed about what this particular agency and agencies like them can do for our loved ones?  Has your loved one actually had the experience of working for one of them?  

I would caution people not to judge what they have not experienced. 

Are you aware that .82 cents on every single dollar of merchandise sold in their stores goes directly back into the workshop program Josh participates in?  Did you know that Savers (Big Brothers/Big Sisters) gives .02 cents on every dollar back to their sheltered workshop?  

Do I think improvements need to be made?  Yes, always, no matter what
subject we’re talking about, nothing is perfect and improvements can always be made.  BUT, I am telling you from experience, our experience, Josh loves his job, takes his job seriously, is gaining skills, and is truly loved by the people around him, coworkers, job coaches, and supervisors alike.  Is a sheltered workshop the vocational answer for everyone with ID/DD?  Of course not!!  Is it right for some?  Absolutely!  Should the sheltered workshop be an OPTION for families?  Yes it should!!

I am finding it increasingly difficult to not speak my mind about the
positive experiences we are having with Goodwill when all we see or hear about is how “bad” the sheltered workshop is for MY kid.  To all of you naysayers - YOU’RE WRONG!  Based on our personal experience with Josh and Goodwill, YOU ARE WRONG!

Settling….

As adults, we all end up settling in one way or another.  How many of us, with or without a disability, end up working at a job we absolutely love?  Most of us settle for something that will pay the bills.  Hopefully, we’re able to find something that lets us use our skills so we’re not bored to death, but most people LOVE the weekends.  Rarely are we able to convert our passion into a career.  

As the debate over sheltered workshops and “meaningful employment” continues, I’ve struggled with exactly what that means.  In my teens I worked at a few fast food places.  I ended up moving to a better job at a drug store.  From there I ended up paying medical claims for an insurance company.  None of those were exciting.  They were available.  I did my best and moved up in the last company, changing positions when I discovered something that I was good at.  

I’ve always envied people who have the resources to create their own employment, follow their dreams, and earn a living doing what they were meant to do.  Most of us aren’t that lucky.  What we can do however, is pay attention to what motivates us.  We can take an honest inventory of our talents and skills.  Hopefully, we’ll think of a dream job, and maybe get a chance to work towards it.  That’s what dreams are for – setting realistic goals.  Who likes to keep working towards the same dream all of their lives without getting anywhere?  

As parents, I think too often we end up settling for our kids too.  Sometimes it’s a matter of financial resources.   Parents may look for employment for their son or daughter that allows them to pursue their own careers.  They can’t afford to stay home, so the child has to go somewhere.  Sometimes we end up falling for the hype we’ve been fed since our child was born – they are limited – they won’t be happy in challenging positions so we should give them something easy to do so they can be “productive.”  Sometimes, we just don’t know where to turn or what to do.  Services and supports are out there, to varying degrees, but they can be difficult if not impossible to navigate unless you have someone who can show you the ropes. 

In the past several months I’ve gathered stories about people who have Down syndrome that have fabulous jobs.  Their parents were able to find a talent or skill and turn it into an opportunity.  Full disclosure:  I’m a little jealous.  I know not everyone operates on the same level.  Not all people, with or without Down syndrome, could to the jobs that these people have.  The thing that inspires me is that the parents were able to find solutions.  I’ve been thinking a great deal about how we can support each other to make this the norm, rather than the exception to the rule.  I’ve been thinking about WHY we settle – for ourselves and our children.  

Here are a few of the people who have turned their passions into “meaningful jobs.”  

  • As a 2004 graduate of Eldorado High School in Albuquerque, New Mexico, Tim was elected homecoming king by the highest margin of votes in school history. 
  • In the fall of 2004, Tim moved to Roswell, New Mexico to attend Eastern New Mexico University.  
  • Tim spent much of 2009 and 2010 living aboard a sailboat with his parents and traveling throughout the Bahamas. 
  • After observing the effect Tim had on Red Robin restaurant and its customers, an idea emerged regarding Tim owning his own restaurant. In May of 2010, a lease was signed for a facility in Albuquerque and a construction company was hired for tenant improvements.

Donna and Jenna

We are the best of friends. We enjoy making cards and want to sell the beautiful cards we create.  With the support of our parents Just For You CardArt was launched.

Christian Royal

Makes and Sells Pottery

Christian Royal is a young man with Down syndrome who struggles with single words and has yet to grasp basic addition or time.  However, since his teen years, Christian has shown an interest in, and aptitude for, working with clay. Christian was unable to “do” school as other students did and began making pottery as part of his homeschooling program.  
“Sarah and I started cooking together because she was going through a tough time in middle school,” she told me. “She hated school. Hated having Down syndrome. Hated being different. She shut down and hid in the basement and cut herself off from everyone. So in seventh grade, I removed her from all special ed courses and only put her in inclusion classes and homeschooled her half days. I used cooking to help teach her. She really liked it. One day I thought, Why not let others see the benefits of cooking and how you can incorporate therapy, communication and friendship?   

Oliver Hellowel is a Photographer

Oliver now (2012/2013) attends a mainstream college in Taunton Somerset England and hopes to be able to further his photography to a point where it can be his form of income.

He wants to be ‘a professional’


Creative Thinking and Not Settling

When I spoke to Helen Royal, she told me that neither her nor her husband knew anything about pottery.  The tried it as a way to bring art into his homeschooling curriculum.  His parents had taken him out of school because teachers wanted to put him on a “trainable” path… Sarah’s mom used cooking as a way to connect with her daughter who was having trouble in school.  Tim worked in public restaurants and found he enjoyed greeting people.  His parents were able to by a store for him and now his hugs are famous!  Donna and Jenna are best friends who turned a hobby into a business.  Oliver and his step-father started taking pictures together and discovered a hidden talent that could end up being very profitable.  All of these are examples of using passion and talent in a entrepreneurial venture.  They are extraordinary stories, not because the adults in them have Down syndrome, but because they and their families didn’t settle.   

 I would like to have a brainstorming session on how we can help each other discover the hidden talent and passion in each of us and our children.  We all have something to contribute….  Anyone interested?

May is Jobs Month on The Road We’ve Shared

Add Your Voice to Our Survey

A few weeks ago, there was a “landmark” decision about sheltered workshops that may end up signalling the end to all work opportunities that are deemed exclusive.  
Rhode Island Sheltered Workshop Decision on The Road We've Shared

“Rhode Island to become model for desegregating sheltered workshops”

I wrote about my initial thoughts in a previous post:

Legal actions forced de-institutionalization and inclusion in schools.  This IS a good thing – but not appropriate for everyone.  Now, states and private companies are afraid of lawsuits and that is hindering their ability to provide services for those who really need them.  

Since then, we’ve had a discussion online in an IDSC group, and gotten more input from other parents.   I’ve also created an online survey for anyone who is the parent/guardian of an adult with Down syndrome to share their thoughts.  

We’ve gotten 15 responses so far and the results are mixed.  The survey asks about personal experience and thoughts about whether “sheltered” environments are exploiting our loved ones and should be eliminated.   So far, 4 people think yes, they are bad in every sense and better alternatives should be created.   However, 7 respondents aren’t so sure that this is the way to go.   


You can help!

Tweet: Share your thoughts! Survey on jobs & sheltered workshops for adults with #Downsyndrome http://bit.ly/DsJobs #DsRoad

” Share your thoughts! Survey on jobs & sheltered workshops for adults with #Downsyndrome  ”

Share the link to our survey on Facebook, Twitter, your blog, and anywhere else.  ( http://bit.ly/DsJobs )

The truth is, unless we make our voices heard, we won’t have any say in the matter.   Other states are already following suit.  We’ve seen how one court decision can set a precedent and cause other states to react, sometimes without thinking it through all the way. (i.e. de-institutionalization and inclusion in schools)

As we spend some time this month talking about jobs, I hope you’ll take a few minutes to complete our survey, share your own experience on our Facebook page, or send us a picture of your son/daughter/loved one at work for our Pinterest Board.   If you’ve got a story to share, let us know and we’ll get it posted to our Guest Blog page.   

There’s LOTS to talk about this month so stay tuned and join the discussion.   Let YOUR voice be heard!  

Adults with Down syndrome work on The Road We've Shared

Also, if you find any good stories already posted online, please share them with us.  I found this great story on “Adventures with Beth.”  Congratulations Beth on your one year anniversary at Little Caesar’s!