The wonderful world of dating…

Yes, dating… and talk of marriage… has someone written a book yet about people with Down syndrome dating and getting…. married???  I attend conferences and read anything about Down syndrome… I have been a parent advocate, worked in the disability field and still feel lost.

My daughter, you know as Becky, who is almost 23 now, has “found her cowboy”… he is 26, an Eagle Scout, loves country music and Batman… they really are a perfect match.  The influence they have on each other is one of encouraging each other to more independence.  The maturity I have seen in them since they started dating is amazing.  They really are good for each other.

Jeremy, or “My boyfriend” lives 3 hours away so we dont see them as much as they would like to.  It is a good thing both families have Verizon so that we dont get charged for all the minutes on the phone they rack up!

Motivation… this is the key… Jeremy is motivated to read better, and to become a self-advocate like Becky.   Becky is motivated to get up early like Jeremy… and do the outside chores like Jeremy.  She has learned to use the calendar function on her computer so she can get alerts about her next trip to see Jeremy!

They met at a Hobby Lobby about 7 months ago.  Since that time, Becky has moved out into a trailer on our property and worked on her independent skills.  She takes pride in her work at her Art Studio and still loves to speak to groups.  Jeremy has participated in her Art events and beams with pride – “she’s MY girlfriend”. It was about 6 months before they took the plunge to kiss on the lips! Luckily, like everything else about our kids… they do things slowly. I have heard from parents of married kids that they are not sure what goes on in the bedroom… thier relationship is just different from our own.  I know that we have not felt the need to be worried about them like we would other teenagers.

I am not sure if it was a mistake or not, but a couple years ago, we bought the movie Mr. Blue Sky which is about a young woman with DS who gets married (highly recommend it).  We recently watched the movie Monica and David about a couple with DS who get married.  I let them watch it together and look out… I hear lots of phone discussions about marriage.  When we left thier house, she told me that he planned to have a Man to Man conversation about marriage with his dad… oh boy.

Luckily, our families are pretty compatible.  His mom recently asked me if Becky was as serious as he was – well ya… I’m pretty sure.  Problem is… both of our families are pretty controlling of our kids… neither of us would want to let our kids go.  Time will tell.

I have heard of engagements that last for years.  I am not sure if that is fair to the kids.  Thier lives can be shorter than ours, they tend to get Alzeimers earlier, and I would hate to hold them back in the best years of thier lives.  On that note… I am in no hurry to take the next step… a long engagement means status quo.  It is wonderful to watch them together loving each other.  Change is always scary and hard – for the parents at least.

So, anyone else have any experience in this realm??  Is there a book I dont know about?

New Art Studio

Becky and I have been very busy since we arrived in Texas!  We have finally completed her DARS (Department of Assistive Rehabilitation) grant for a small business!  Becky is opening her own art studio called “Livin My Dreams” Art Studio and Co-op.  Her business “Livin My Dreams” actually encompasses her speaking, art and health.

Livin’ My Dreams  Flyer about her business.

Congratulations Becky!

TX Health and Human Services Commission has invited Rebecca Page of Alpine, TX to participate in the Consumer Direction Workgroup for a three-year term.  The workgroup is composed of consumers, advocates, providers of services and representatives from HHSC, the Department of Aging and Disability Services, The Department of State Health Services, the Department of Assistive and Rehabilitative Serives, and the Texas Workforce Commission.

This workgroup was established to: (1) advise HHSC concerning the delivery of services through consumer direction in all programs offering long-term services and supports; and (2) assist HHSC in developing and implementing consumer direction models and expanding the delivery of services through consumer direction.

Rebecca and I (her mom) will be headed to Austin for her Orientation and her first meeting tomorrow.  We are very excited to be a part of the decision making process for the state of Texas regarding Consumer Direction (Self Direction).

Rebecca is currently working on opening her own art studio called “Livin My Dream” here in Alpine at 105 N 7th st (behind BAM automotive).

Couch Potatoes

TV power is under lock and key!

Mr. Bob TV Timer

Anyone having trouble with the TV?  We all know how much our kids with Down syndrome love the TV!

At the NDSC conference, I went to a parent session for those of us with “independent” adults with DS.  There were some success stories, but there was one repeated story that concerned me… issues with the TV.  It seems that many “independent” adults still have no concept of going to bed on time and watching TV at night only makes the problem worse.  There were many adults with regular jobs who were falling asleep at their jobs because they stayed up too late watching TV!

My kids did not grow up watching alot of TV, but now that Becky is an adult, with some independence and her own apt (in my house)… she does like to watch TV and she does not respect the 10:00 PM time to turn it off and go to bed.  Imagine that!  There are days I want to go to bed at 9, but I have to make sure she shuts it off or else…

After the session at NDSC, I realized that this may be a losing battle!  I had heard of a product called Mr. Bob TV Timer, so I bought one.  The battle is won!!  Mr. Bob shuts the power off to the TV set from 10 pm – 10 am (or whenever you program it) and it will only allow 4 hours during the day of TV, which has to include Wii or an exercise video.  I really like Mr. Bob!!  Becky learned very quickly to budget her TV watching time.   She is not so inclined to turn it on when she is bored, but finds other productive activities!  A great investment at $69.95!

Here is the link for Family Safe Media:  www.familysafemedia.com They have lots of other great items for safe TV watching as well!  The link is also on the side if you need it!

iDream

It’s almost here!  This is the iDream program that I have been working on for students with intellectual disabilities.  Please pass the word so that this first session will be a success!

Thanks, Joyce

iDREAM

Nampa Campus (*NAM)

Intellectual ~ Disabilities ~ Reaching ~ Educating ~ Achieving More

Welcome to iDream

Community Education has designed classes for intellectually challenged individuals who would like to experience education and learning at CWI.  Support workers are not available and assistance must be provided during time on campus. Please participate in any or all classes and thanks for joining us!

(Class Enrollment Limited to 20 students)

Reading for Fun and Learning

Explore plot, setting, characters, and themes by using familiar and not so familiar stories along with many fun activities with teacher, Lesley McCandless.

T. & Th. 6/1-6/24 2:00p-2:50p $59

Countries Around the World

Learn world history from teacher, Lesley McCandless, by discussing and viewing movie clips from different countries.

T. & Th. 6/1-6/24 3:00p-3:50p $59

Beginning Spanish for You

Join Spanish teacher Lesley McCandless as she offers basic vocabulary and word phrases in an interactive and easy pace using engaging activities and songs.

T. & Th. 6/1-6/24 4:00p-4:50p $59

Awesome American Sign Language (ASL)

Michael Ames teaches the beautiful visual language of signing by using fingers to spell and to make numerals and symbols.

M. & W. 6/7-6/30 2:00p-2:50p $59

Art Art and More Art You will love your class with Kurt Scheffler. Don’t miss this interactive creative, fun, learning experience.                                                                                          M. & W. 6/7-6/30 3:00p-3:50p $59


Cool Drama Participate in imaginative acting focusing on natural creative play with teacher Jef Petersen.  Wear comfortable clothing.                                                                                   M. & W. 6/2-6/30 4:00p-4:50p $59

The WRAP will be sent out in the Idaho Press Tribune on the 16th and registration is scheduled to begin on the 17th.  Stop in at any CWI location.

For more information, contact IDthinkcollege@gmail.com

Firsts

One Beautiful Girl!

So, here I sit eating a salad at home alone, while Becky is off to Red Robin and the prom.  Amazingly, this is not only the first prom for our family, but the first date in which I have been left at home to wait.  My older kids did

Prom pics before dinner...

not date until they were at college.  More amazing is that Becky is on her first date!!  Without me!

I am so proud of her.  She has come farther this year than I could ever dreamed.  She has done more than I could ever imagine on her road to independence.

Last year, we went to the National Down Syndrome Congress Conference and it changed our whole perspective of Down syndrome.  I am so glad we went.  If you have a child with DS, I HIGHLY recommend it – I wish I would have gone sooner.

At the conference, we saw young adults with Down syndrome who were doing all the things that young adults do, some more independently than others.  We learned about Self Direction from people around the country.  It was truly life-changing.  We are going back this July, and I look forward to another revolutionary experience.

I am just rambling now… so I better find something to do before I am tempted to go pick her up early so that I can sneak in and watch.  I have to give her a little time alone…

A Buddy with Down syndrome

Becky teaching a group of girls about Down syndrome

Becky teaching a group of girls about Down syndrome

  Recently, I signed up for Yahoo! Answers and began looking at questions about Down syndrome.  I am absolutely amazed at the ignorance of people about Down syndrome!  I guess I would have to say that 20 years ago, I was probably just as ignorant, but I would think that there would be more awareness now.  Apparently not.

  The most prominent attitude I have found is one of fear based in ignorance.  Many expectant mothers fearing a baby with Down syndrome.  Do they fear Cerebral Palsy, and deafness?  Do they fear their child growing up and being rebellious?  I can think of many other things to worry about than “will my baby have Down syndrome??”  Sometimes, their fear comes from some distant relative that had Down syndrome years ago.   Their perception of Down syndrome is not up to date, and their knowledge of the cause or lack there of is non-existent.  Didn’t we do this in Biology?  Unfortunately, because they are ignorant of the facts, their fears run wild.

  The most alarming questions are the ones from parents who have been pre-natally given a “soft” diagnosis of Down syndrome.  They want advise about abortion – should I keep this baby??  The answers would also surprise you – opinions based in opinion, no facts.  I know that the abortion rate among these women with this diagnosis is 90% and I can see why.  If this group of people is any example of the general public, we are in trouble.

  So, what does this tell us??  We need to educate our communities about Down syndrome!  They need to see our kids in action!  The best way to do this is to join a Down syndrome support group, or start one if there is not one in your area.  Get together with other parents and find some ways to get the word out.  

  I am so grateful to the founders and volunteers of our parent support group here in the Treasure Valley. (http://www.idahodownsyndrome.org )  It has been serving the Down syndrome community for almost 30 years!  7 years ago, our group began to participate in the Buddy Walk which is sponsored by the National Down Syndrome Society. (http://www.ndss.org/ )  This has raised awareness substantially in our community.  Due to the growth and awareness we have experienced through the Buddy Walk, we are growing and working towards other ways to educate our community.

  Those of us who know and love the people with Down syndrome need to stand up and speak out.  To know them is to love them is the general consensus.  I feel sorry for those who will never experience a buddy with Down syndrome.

The best worker I ever had…

  As a new blogger, I don’t know if this is legal, but I have to share this…  it’s one of those email forwards that we all dread.  Most people do not send them to me because I don’t pay much attention to them or forward them to 10 people – whatever… but my aunt sent me this one and it made me teary…

   A Truckers Story
If this doesn’t light your fire..your wood’s wet! 
I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy.  But I had never had a mentally handicapped employee and wasn’t sure I wanted one.  I wasn’t sure how my customers would react to Stevie.
 
He was short, a little dumpy with the smooth facial features and thick-tongued speech of Downs Syndrome.  I wasn’t worried about most of my trucker customers because truckers don’t generally care who buses tables as long as the meatloaf platter is good and the pies are homemade.
 
The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded ‘truck stop germ’ the pairs of white-shirted business men on expense accounts who think every truck stop waitress wants to be flirted with.  I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.

 

I shouldn’t have worried.  After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot.

After that, I really didn’t care what the rest of the customers thought of him.  He was like a 21-year-old in blue jeans and Nikes, eager to laugh and eager to please, but fierce in his attention to his duties.  Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table.  Our only problem was persuading him to wait to clean a table until after the customers were finished.  He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty.  Then he would scurry to the empty table and carefully bus dishes and glasses  onto his cart and meticulously wipe the table up with a practiced flourish of his rag.
 
If he thought a customer was watching, his brow would pucker with added concentration.  He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.   
 
Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer.  They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks.  Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home.  That’s why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed work.
 
He was at the Mayo Clinic in Rochester getting a new valve or something put in his heart.  His social worker said that people with Downs Syndrome often have heart problems at an early age so this wasn’t unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine. 
 
Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news.

Belle Ringer, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table. 
 
Frannie blushed, smoothed her apron and shot Belle Ringer a withering look.
 
He grinned.  ’OK, Frannie, what was that all about?’ he asked.
‘We just got word that Stevie is out of surgery and going to be okay.’
‘I was wondering where he was.  I had a new joke to tell him.  What was the surgery about?’
Frannie quickly told Belle Ringer and the other two drivers sitting at his booth about Stevie’s surgery, then sighed:  ’Yeah, I’m glad he is going to be OK,’ she said.  ’But I don’t know how he and his Mom are going to handle all the bills.  From what I hear, they’re barely getting by as it is.’  Belle Ringer nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables.  Since I hadn’t had time to round up a busboy to replace Stevie and really didn’t want to replace him, the girls were busing their own tables that day until we decided what to do.

After the morning rush, Frannie walked into my office.  She had a couple of paper napkins in her hand and a funny look on her face.
 
‘What’s up?’ I asked.
 
‘I didn’t get that table where Belle Ringer and his friends were sitting cleared off after they left, and Pony Pete and Tony Tipper were sitting there when I got back to clean it off,’ she said. ‘This was folded and tucked under a coffee cup.’   
She handed the napkin to me, and three $20 bills fell onto my desk when I opened it.  On the outside, in big, bold letters, was printed ‘Something For Stevie’.   
‘Pony Pete asked me what that was all about,’ she said, ‘so I told him about Stevie and his Mom and everything, and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this’ She handed me another paper napkin that had ‘Something For Stevie’ scrawled on its outside. Two  $50 bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply: ‘truckers.’   
That was three months ago.  Today is Thanksgiving, the first day Stevie is supposed to be back to work.
His placement worker said he’s been counting the days until the doctor said he could work, and it didn’t matter at all that it was a holiday.  He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy.  I arranged to have his mother bring him to work.  I then met them in the parking lot and invited them both to celebrate his day back.
Stevie was thinner and paler, but couldn’t stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.   
‘Hold up there, Stevie, not so fast,’ I said.  I took him and his mother by their arms.  ’Work can wait for a minute. To celebrate you coming back, breakfast for you and your mother is on me!’ I led them toward a large corner booth at the rear of the room.
 
I could feel and hear the rest of the staff following behind as we marched through the dining room.  Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table  Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper napkins.  ’First thing you have to do, Stevie, is clean up this mess,’ I said.  I tried to sound stern.

Stevie looked at me, and then at his mother, then pulled out one of the napkins.  It had ‘Something for Stevie’ printed on the outside.  As he picked it up, two $10 bills fell onto the table.
Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it.  I turned to his mother.  ’There’s more than $10,000 in cash and checks on that table, all from truckers and trucking companies that heard about your problems.  ’Happy Thanksgiving,’.
Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well.
But you know what’s funny?  While everybody else was busy shaking hands and hugging each other, Stevie, with a big, big smile on his face, was busy clearing all the cups and dishes from the table.
Best worker I ever hired.
 
Plant a seed and watch it grow.

This just in: “I hate to be the bearer of bad news but this story is a work of fiction. It was originally written by Dan Anderson and published in “rpm Magazine for Truckers” in November 1998 and reprised in the 2000 book “Stories for a Faithful Heart.” It’s a nice story but I’m afraid it’s just that.”

Thanks for the update.  Great story!

 

TVDSA is Up about Down!

Our support group, Treasure Valley Down Syndrome Association is growing up!  We have several new board members including myself and Becky, which adds to the excitement.  Our Buddy Walk did so well this year that it is forcing us to get organized and get busy. 

  On the agenda to change, are our meeting purpose, adding an adult group, and increasing our community outreach.  Last night, we met for the first time in our new office building, generously provided to us by Troy McClain of the McClain Companies.  It was exciting to be in “The Board Room” brainstorming for the future of TVDSA.  We now have an actual office in which to keep our stuff, to meet with volunteers or supporters and to get our work done.  Thank you Troy!

  We are refocusing our meetings back to being a support group that meets the needs of all ages of Down syndrome.  We hope to bring back some of the older folks who have not attended since they were children, and thier parents.  Networking between the “experienced” parents and the “inexperienced” parents is one of our goals.  The experienced parents have so much to offer our group.  Networking among same age groups is another goal.  Sharing our ups and downs is what this group was meant to be.  We will still offer speakers on various topics, but hopefully, we can make our focus supporting our members, and not just providing the speakers.

  Our kickoff for the Adult group is tonight at a Christmas Party.  Becky is fired up to be speaking to the group about what we have in store.  We will have food, karaoke and dancing – 3 of the most favorite things for adults with Down syndrome.  Our first regular meeting of the adults will be January 12, 2010 where we hope to develop some self-advocate leaders who will take the lead in the group.  It should be a great time!

 Reaching the community with the message that people with Down syndrome are more alike than different is one of our biggest goals.  The Buddy Walk has been a complete success and has started to make the community aware of our group.  Now, we hope to develop speakers - self-advocates with Down syndrome, and other Down syndrome advocates, to bring the message to schools, organizations, or anyone who will listen.  Wirestone Marketing Solutions Company has recently donated thier time to help us develop a beautiful new parent packet that we intend to distribute to all babies born with Down syndrome in the Treasure Valley.   Reconnecting with all the hospitals, and the medical community is one of our biggest projects and maybe the most vital.  With the abortion rate of babies pre-natally diagnoised with Down syndrome at 92%, we must get the word out that this group of people are a wonderful asset to our community.   

  There is alot of work to be done.  Thanks to the board of TVDSA and thier commitment, I think we can do it.  If you are “up about Down” and would like to be a part of this growing group, go to www.idahodownsyndrome.org and let us know.