So how about some fun questions:
About Us! I'm Karen!
Also known as Mom at Just Joshin' Ya on Facebook
So how about some fun questions:
The two old guys.....they get to say things that most of us are thinking. They don't care to be "politically correct"! There are many days, I'd just like to blurt out something I'm thinking without thinking about consequences!!!! I actually have enough problems having a lack of filtering at times......but I'd love to be able to get away with the things these guys do. I bet by the time I'm their age, I will have an awful time controlling my mouth and I probably won't have too many friends either. Yes, LOL!
Reflecting On Another Year
Originally posted March 20, 2014 by Karen Gregoire of Just Joshin' Ya
I'm sure you all know by now that Josh's favorite singing group is Celtic Thunder, right?!?!? Well, if you didn't, you do now. :)
One year ago tomorrow THIS happened:
Josh's Mom (Karen),
Your Tweet got a reply!
@GDonaldsonCT @RyanKellyMusic @neilbyrne_CT @laursadurrant
It's World Down Syndrome Day ~ A RT for Josh, your biggest fan?
George Donaldson @GDonaldsonCT
Hey Josh Hello from Glasgow, hope ur having a good day
02:55 PM - 21 Mar 13
When I showed Josh this Tweet from George, he and I were jumping around with excitement!! "George sent you a message" I kept exclaiming OVER and OVER, like a crazy woman! You have to know that none of the guys, that I have ever seen, have directly Tweeted to a fan (maybe they have and I just want to believe we meant something extra special to George). They will retweet, but I've never seen any of them REPLY to a Tweet! What a GREAT day it was on 3/21/2013! Josh and I both felt very, very special by George's gesture!
THIS YEAR, on March 13th, 2014, George passed away suddenly and unexpectedly at the age of 46 (leaving behind his wife Carrie and his 13 year old daughter, Sarah) ~ the light of his life, as he would describe them!
George's untimely death also left Josh (and mom) very saddened at the thought of never again getting to meet him in person, as we had so many times before. George was a class act with a heart and soul made of gold, always willing to spend that extra time needed to make Josh feel appreciated. The thought of never being in his presence again, never getting to experience his talent live and to never again be able to see and hear him on any new Celtic Thunder DVDs or CDs has been quite overwhelming to both of us! ~ (As you all know, if you follow Josh's stories, Celtic Thunder DVDs and CDs are like GOLD to Josh!!)
What a difference a year can make! :( George brought us so much happiness and joy. I'm not at all convinced that their shows will ever be the same without The Big G there to wave at, wink at and high-five Josh, but we'll keep an open mind! We do know, for sure, that he is entertaining everyone in heaven with that huge George Donaldson smile, lovely voice and his guitar!
Josh is Driving
Originally posted March 8, 2014 by Karen Gregoire of Just Joshin' Ya
I don't have any one story that pops into my mind that I can share with you about Josh. Specifically, because I share daily stories about his life on his Facebook page, Just Joshin' Ya, so it would seem that I'm all storied-out, OR NOT!
As of late, I've begun to realize that Josh has started to take over the driving responsibilities "on his own road"; whereas, once upon a time, dad and I were driving and it was our road. Josh is currently most definitely taking the wheel from us, slow but sure. The transition HAS begun, whether I like it or not, and I hadn't even realized it until this last month when Josh was sick with a bug after a bug after another bug.
During the month of February right into March, so many amazing things happened in the face of him being sick. February 7th, Josh, dad and myself headed on over to Josh's school to meet with the rest of the team to develop his IEP for the coming year. He voiced lots of opinions, more than in any other year. When we left the 2 hour meeting, we stopped to get a quick lunch and headed home to eat. Within 30 minutes, he was vomiting and other things followed shortly after that. No need to be descriptive, you get the picture.
THIS IS WHEN JOSH STARTED TO TAKE THE WHEEL FROM ME AND DAD, LEAVING OUR ROAD AND DRIVING OFF ONTO A NEW ROAD THAT HE HAD JUST DISCOVERED FOR HIMSELF!!!
Work is a requirement
Karen posted this originally at the end of May, as the Workshop discussion was picking up steam. To catch up on Josh's experiences thus far, check out his Facebook page Just Joshin' Ya.
Work - in this house -
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.
*This post was orginally run on 1/4/14 by Karen of Just Joshin Ya
Where to begin?
Josh was born in May of 1995, feels like five minutes ago in some respects and a lifetime ago in others. How does this happen?
Where did the time go? How
did we get here? A blink of an eye! Every good story has to provide a little background information!
This is where our story, what we like to call the rollercoaster of Down
I was 28 years old, married for eight years with a five-year-old, typical son, Tim, when Josh was born. During the course of my pregnancy, we consented for some prenatal testing. Through a blood draw, the lab performed an Alpha-Fetoprotein test (AFP), which I had declined while carrying my first son because of its inaccuracy rate but, for some reason, while carrying Josh, we decided to have the test. It came back negative for any abnormalities. YAY! I called everyone I could think of to tell them that the baby we would have on or around June 15, 1995, was going to be healthy!
However, on the Friday of Memorial Weekend in May 1995,
very much to our surprise, Joshua Michael arrived THREE FULL WEEKS EARLY, weighing in at 8 pounds, 1 ounce, with a cleft lip, Donald Trump sweep-over hairdo and Down syndrome!! I knew he had Down syndrome the minute they placed him on my chest.
listen to me!
Originally Posted by Karen of Just Joshin' Ya on 2/27/14
In the past few weeks, maybe a month (time goes by so fast and is so hard to keep track of), Josh has been expecting more from those around him. He has 'all of a sudden' developed an expectation that he be given more respect.
He's actually been DEMANDNG people pay more attention to him when he is speaking. GOOD FOR HIM!!!!! This is in no way a bad thing and a
great stride towards self-advocacy! This new expectation he has, this demand from him is something pretty new, but today I question if this maybe has been something building up inside of him for many, many years and today was the day he figured out how to let the rest of us know that HE WILL BE HEARD! Recently, he blurted out to dad "you're
always ignoring me, you're always on your phone." Dad is self-employed and is on his phone a lot for his business, but NEVER ignores Josh (he just multitasks)! To me, Josh has demanded, "mom, look at me!!!!"
AN ABUNDANCE OF LOVE
Originally posted 2/4/14 by Karen Gregoire. Visit her and her family at Just Joshin' Ya
"SOCIAL" ~ What does that word mean to me? I guess the first thing that pops into my head when I think of the word social is "relationships." Josh has had so many over the course of 18 years, it's really difficult to decide where to start.
From Josh's perspective, I think of family, friends, neighbors, school, work and social activities. From my perspective, I think about relationships that I have developed because my son has Down syndrome. If it weren't for Josh AND Down syndrome, I never would have had the opportunity to meet so many amazing people! The thought of that just makes me sad so I'm thankful our path has lead us here! This is exactly where we're meant to be!
I tend to breakdown our life with Josh's by categories, so I'll do it again here. I think it's easier for my brain to process where we've been if I break things into segments. The one thing that remains CONSTANT, no matter what "category" we're living in, everyone seems to fall in love with Josh!
What my sibling taught me
Originally posted by Just Joshin' Ya on 1/10/14 Follow Josh and his family here and on Facebook.
In 2011, Josh's older brother, Tim (my oldest son) and his long-time girlfriend, Steph, wanted to adopt/rescue a third dog from a shelter in Arkansas. Not just any ol' dog, but a deaf dog. The owner of the shelter denied their request stating they were young, already had two dogs and probably wouldn't be the best placement for a dog with special needs. Tim wrote the owner of the shelter the following letter:
I want to start by saying I respectfully understand your reasoning on why you do not want us to adopt Frisbee and trust your professional opinion, but I am VERY determined to change your mind. As you may know my brother has special needs and because of that my family is very drawn towards other people and animals who have special needs. I look at my brother as a teacher. He has taught me SO many good things I can't even count on both hands and feet the ways he has improved my life.
Originally posted 01/04/14 by Just Joshin' Ya's Mom - Karen Gregoire
Do you have a child with an intellectual disability or developmental delay? Have you thought long and hard about whether or not to apply for guardianship of your son or daughter once they turn 18? So did we! Here is the process we worked our way through with Josh.
There's a few very important things to remember while you're reading this blog ~
1) All states have different rules.
2) Every family has to make their own decisions about what is best for them and their child.
3) I am not a lawyer nor do I profess to be one. I am also NOT someone you should take advice from without consulting the "real" professionals before making decisions that involve your loved one.
***For information regarding the laws in the state or country in which you live, you should contact your local agencies and/or an attorney.
Life on "the road" of caregiving for adults who have Down syndrome.
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