Showing posts with label advocate. Show all posts
Showing posts with label advocate. Show all posts

Thursday, October 11, 2012

31 for 21 Day 11 Down Syndrome Society of West Florida: We're Having Our 1st Event!


 

Down Syndrome Society of West Florida

Fall Picnic and Membership Drive

 
 
 
 
 
 
 
 
 
 
 
Saturday
October 27, 2012
10:00 a.m. –12:00 p.m.
 
Bayview Park
2001 E. Lloyd Street Pensacola, FL
 
 
 
Down Syndrome Society of West FL
Serving Escambia, Santa Rosa, Okaloosa and Walton Counties of Northwest FL (850) 292-4796 
 

 

Join us as we celebrate

Down Syndrome Awareness Month

with a Family Picnic!

 
Hot dogs, chips and drinks will be provided, and we ask that each family bring a side dish to share! 
Membership applications for the DSSWF will be available at the picnic!
Please RSVP to (850) 292-4796 to reserve your spot at the picnic!   
 
 
                                                                                  

Wednesday, March 21, 2012

"WORDLESS" WORLD DOWN SYNDROME DAY!

our impromptu world down syndrome day picnic with big brother ethan!

tom's hotdogs and sonic drinks.... yummy!
yogurt is a finger food, right?

brothers playing hide and seek!

" this salt pot from the civil war is so cool... "
 "i really want to get in it!   help a brother out!!"
and of course, he did....who could resist?


pure joy!!!!

a beautiful day!

Happy World Down Syndrome Day!

today is world down syndrome day!   we will be taking freshly baked muffins to share with wyatt's family service coordinator and the team who will be part of wyatt's first TRANSITION TEAM MEETING!!!   to say that this is a stressful time is an understatement!   this is the first step in transitioning out of the early intervention program into the public school system.  we have been so very blessed by the early intervention program, i do not look forward to transitioning!!!  but it is time to start the process, so here we go!  we covet your prayers as this process begins! 

three years ago we had never even heard of world down syndrome day, and today we actually celebrate it!   we certainly had no idea how much that little extra chromosome would change our lives!  we know that God has great plans for our little man, and that wyatt's Down syndrome was NOT a surprise to our Mighty God!  


"For you created my inmost being;
you knit me together in my mother's womb.   
I praise you because I am fearfully
and wonderfully made;
your works are wonderful,
I know that full well. "   
Psalm 139:13-14 


"For I know the plans I have for Wyatt,"
declares the Lord,
"plans to prosper him and not to harm him,
plans to give him a HOPE and a FUTURE!!!"
Jeremiah 29:11

click here for a really awesome video that my friend made for world down syndrome day!  you just might see wyatt a *few* times.....as well as some of his friends!    blessings.....


Thursday, March 1, 2012

Happy Birthday Byron!!!

today's post features guest bloggers; laura, sharon and charlotte.....the smith girls; their blog is "a sister thing...."   they are the older sisters of byron, an adult who has Down syndrome here in our community.  this is the story of his birth 39 years ago today!   byron was named the florida special olympics athlete of the year in 2010, and was our local buddy walk ambassador for this past fall!  byron is a busy fellow with a family who loves him very much!   enjoy!




Happy Birthday Byron!  
Have a Wonderful Day Celebrating You!!!






Heeey…
“He’s just different”…these are some of the words these three sisters recall hearing as our dad gathered us together to share the details of the newest arrival to our family. Byron was born on March 1, 1973 and was the ninth child in our family. For us, making room for another brother or sister was not unusual, in fact it was a pretty usual event. Our parents always knew they wanted a large family and they accomplished their goal! But, this delivery was different—and because our mom was still in the hospital, it fell to our dad to explain this special delivery.

Daddy gathered his children together to share how the birth of this new brother was “different” than the ones before him. This brother was born with something called Down Syndrome. We’d never really heard of something like this before. Daddy continued…he explained that this brother was going to look different. This brother was probably going to have physical characteristics different from the rest of us. Byron would have stubby-webbed fingers, a short neck, and a flat bridge to his nose. We quickly decided this appearance thing wasn’t a problem at all. No one outside our family would ever have to know he was “different”—we would just dress him in sunglasses, turtlenecks and gloves and no one would be the wiser! The bubble soon burst when Daddy reminded us that we lived in Florida and the heat would make this “disguise” impossible!

He went on to share that he and mom weren’t sure what Byron would be capable of—the doctors weren’t very encouraging. The doctors had warned there was no promise Byron would ever be able to walk or talk, they weren’t sure if he would ever have the mental capacity to have opinions or make decisions They weren’t sure how a baby like Byron would fit in with eight “normal” brothers and sisters. The doctors recommended it would probably be best for their “normal” children if this new baby not go home. They suggested several “very good” institutions with resources to handle a baby like Byron…the doctors further explained, “he’s just different.”

To that point, Daddy told us he and mom had a plan. Good—we needed a plan. They decided they were going to raise Byron just as they had raised us. Our job was to treat this brother just as we treated our other siblings. Perfect—we knew just what to do!

Byron and our mom soon came home from the hospital and we all discovered Byron was different, but different in only positive ways. This baby was a bit slower to learn, but he did learn. He walked, he talked, he made decisions and he had opinions! Not many people could get away with telling Daddy no—Byron had the honor of being one of the few. When Byron held his ground and told Daddy “no-sir”—Daddy would chuckle and say, “I love it—that’s my son, the son who would never have an opinion!”

Byron’s easy-going temperament and zest for life has been a guiding light for all of us! His “differences” have made our family different. As a family, we are closer because of him, we are more loving because of him, we are more patient because of him, we are more understanding because of him, and we are more appreciative because of him. Our lives are enriched because of him.
Byron’s influence on our family has been profound—we strive each day to be more like him. Daddy was right—he’s just different!





Wednesday, January 18, 2012

Wordless Wednesday...... Transplant Worthy??? YOU BET!!!

just thought i'd post some pics of wyatt's friends ..... beautiful children who might be denied the ability to have a transplant (if need be) according to some medical institutions.....


one of wyatt's louisiana buds, william


wyatt and one of his (many) girlfriends, brennan
wyatt's best friend, clayton


wyatt's california buddy
river


cool dude new yorker grady
sweet georgia girl kate

another one of wyatt's louisiana buddies, remney


Friday, January 13, 2012

"No Transplant for You....If You Have a Developmental Disability...."

wyatt and big brother ethan....
i'm back and i'm mad!!!   I AM LIVID!!!!    i had NO IDEA that my child would not be allowed to be placed on a transplant waiting list if, God forbid, he should need an organ transplant.  WHY????  BECAUSE HE HAS DOWN SYNDROME!!!!!   

tonight i was reading an article on the wolfhirschhorn.org website, and my eyes were opened to this atrocity.  according to the genetics home reference website, wolf-hirschhorn syndrome is "caused by a deletion of genetic material near the end of the short (p) arm of chromosome 4..... and is a condition that affects many parts of the body. The major features of this disorder include a characteristic facial appearance, delayed growth and development, intellectual disability, and seizures."   you can read the entire story here, but basically these parents were told that their child would not be allowed to have a kidney transplant when the need arises (which is inevitable) BECAUSE SHE IS MENTALLY RETARDED......  WHAT?????    i'm talking about THIS VERY WEEK, in THE UNITED STATES OF AMERICA.....to be exact, at one of THE BEST CHILDREN'S HOSPITALS IN OUR COUNTRY.... children's hospital of philadelphia (chop).   OH.MY.WORD.  tim said, "we're not in the stone age....."    but it certainly seems like it.....  very hard to believe that this is the "norm" for our kiddos in this day and age.....
christopher "helping" mommy in the kitchen!

as this story is circulating online, i have read status updates from two of my online friends in our Down syndrome community who affirm the truth of this situation.    these two mamas have heard THE EXACT SAME THING!!!!    stephanie said "Several years ago, we were told that Christopher would never receive the transplants he potentially needed solely because of the fact that he has Down syndrome. We were told that they don't like to "waste the organs"."   oh dear LORD......why does the medical community have the ability to play god????   
big brother luke!  you can tell eli is crazy about him!!!
our friend dayna said "A month ago we learned if Luke's kidneys ever failed he would not be put on the donor list because he has Down syndrome. We were stunned to say the least. It's unbelievable that our child's life isn't as valuable as any other child. The world needs more people like Luke who love unconditionally."  i am just SICK about this.  i woke tim up from his nap (yep, here at 11 pm!) and asked him if he was aware of this.  he was not.   i just really cannot believe that in the year 2012 children who have special needs are not given the same rights and privileges that everyone else has.    this is not the last you will hear about this from me......  thinking......   what to do.....   who to talk to...... 

i neglected to include a link to this petition urging CHOP to allow amelia to have the kidney transplant that she needs!  please take the time to sign this petition now!  thanks andrea for this reminder!


Monday, October 31, 2011

31 for 21: Day 31 Wyatt Rocks!!!




so, in case you were wondering, we think WYATT ROCKS!!!

and this about sums it up!!!!!

Monday, October 17, 2011

31 for 21: Day 17 Living Life....

one way that we as parents of children who have special needs advocate for them is simply by living our lives as we would if our child didn't have a special need!   we don't "hide" our children, as parents' were encouraged to do merely 30 years ago....or so i thought.   i recently had a friend tell us that when her 10 year old daughter was born.....read that again....10 year old daughter.....just 10 years ago....she was offered the option of putting her away somewhere.   I WAS SHOCKED that as recently as 10 years ago that was still considered an appropriate reaction to a child with Down syndrome.   unbelievable!  
my friends doris and ray told me that when their son mark was born about 33 years ago they were offered that option.  this young couple, in their early 20's, who had never even heard of Down syndrome, knew nothing about it, were asked if they wanted to "put him away."   their first born child.... they told them that "no, he is not a puppy....we will be taking him home!"   and that's what they did!




i'm sure that it was hard for them back then; i'm sure they had lots of stares and comments..... we still get stares, don't we?     and as awkward and frustrating as they can be, we must still continue to "live life" with our kiddos.   folks need to see that our family is just like their family.....we do fun things together, we discipline kids when they have fits, we comfort crying children......just like they do!  






so today's pics are from a favorite pastime of ours....eating frozen yogurt!   last week we were able to have a brief  visit with ethan over in pensacola while tim had a meeting, so the boys and i enjoyed a visit to the new yogurt place...... yummy!