Wednesday, November 3, 2010

Living with Down's...real life story

Deb heard about this blog and what we were trying to do to connect, inform, and encourage parents in the area of options available to people with multiple/severe disabilities.  Deb sat down with me to share what many would call a “success story” about the life of her 36-year-old daughter, Jenny, who has grown up with down’s syndrome.

Deb advocated, “There is so much more available now for these kinds of kids than there was 36 years ago.  As a parent, it’s up to you to find those things out.  What kind of life do you want for your child?” Deb shared about what it was like to have your first child be diagnosed with Down’s Syndrome; the anxiety, disappointment, joys, fears, and determination one must have to overcome each obstacle.  She and a group of mom’s with children that had special needs got together and began writing letters to the state asking for them to begin programs, schools, and services for their kids. 

For this family, it took them a while to learn that “Jenny wants to do the same things we want to do”.  Jenny attends camps in the summer where she horseback rides, swims, and meets new people (all favorite hobbies for Jenny).  It may be time to change our definition of “independence”.  So, what does that look like at home?

Growing Up

When Jenny reached her 30’s and attended her brother’s wedding, something inside of her changed.  All of the sudden the woman inside her bubbled up, and the desire to “grow up” emerged.  Now, Jenny hopes to be married someday.  To prepare her for her future, her parents have transformed their walk out basement to a master suite.  It has Jenny’s very own bedroom and bathroom, living room, TV and movies, laundry, but no kitchen.  Every afternoon when Jenny comes home from working at Gateway (an employment agency for people with special needs), she vacuums and cleans her apartment, watches some TV, and when her mom gets home from work she will come upstairs to have a cup of tea and visit before dinner.  When Dad comes home, all three get to work in the kitchen for a collaborated effort in making a meal!  The only problem with this set up, is when Mom and Dad are ready to go out on a date.  They will order Jenny dinner and a movie… but she will sneak upstairs and eat food out of the refrigerator!

To help curb this habit of binging, Deb got right to work… She called the local YMCA and the local Curves for Women programs and asked for some kind of discounted membership.  She was delighted to discover that there were scholarship programs that she could apply for.  Now, Jenny and three of her friends get to go to the YMCA to swim, and to Curves to work out two times a week!!!! 






“Does Deb do all this running around??” You ask.  NO. Through the state of Michigan, there are people that work through the Community Mental Health branch in every county that provide a service called “Community Living Skills” (CLS).  This service has been truly a gift to the family as Jenny has been growing older and is no longer satisfied by the childish things that pleased her for so much of her life.  Now, Jenny has a worker that comes to take her and friends to swim, work out, and go to work. 

Jenny works!? 


Deb shared with me a really sweet story about Jenny’s journey with job’s in the past few years.  Deb had a friend who was a manager at a local grocery store who offered to try hiring Jenny, with the agreement that Jenny would shadow a worker there unpaid for one year as a training period.  During this year, the employees would take pictures of jobs that Jenny would accomplish such as “empty the trash can by the water fountain”.  They then attached these pictures to Jenny’s time card.  So, when Jenny would get to work, she would be able to follow this type of visual schedule.  And it worked!!!  Jenny is no longer working at the grocery store for reasons not shared by her mother.  She does continue to work however, two days a week at Gateway. 

If you are interested in learning more about what Gateway is please check them out here


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