This post was originally featured on 3/20/14 in honor of WDSD by our guest Susan Holcombe - mother of Rion.
When Rion Told Me He Had Down syndrome
For three years, we hosted a “tweens” bible study group in our home every other Friday. My daughter was in middle school and Rion was 15 at the time. The group of kids that convened at our home included my daughter’s friend, Josh, who has a form of dwarfism that has resulted in him being only 25 inches tall. At school Josh would use a wheelchair to get around, but in our home he would either be carried by his younger sister or he would scoot and roll. Walking was too painful for him. Because of his size, my son Rion, assumed he was a toddler.
These questions sound absurd and they would never be asked by strangers, yet parents of adult children who have intellectual or developmental disabilities (ID/DD) get asked similar questions all the time. I can’t tell you how many times someone has asked me “Is your son high functioning?” The question is, to me, irrational. First of all what IS high functioning? There is no clinical definition. As a social construct, most people use it to indicate a higher IQ than what is typical for a certain population. If we accept the premise of high functioning then think about what that says about the rest of the population in contrast.
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.
Originally posted 1/31/14 - Updated 7/24/14 by Stephanie Holland
*Our first radio show was a 2 hour conversation about "Guardianship."
I know not everyone can listen to two hours of interview - so if you want to hear just the intro's for the team - here they are!
Intro to the Show, Community, Josh, and me...
Originally posted 3/6/14. Updated 7/16/14 by Stephanie Holland
At this stage in our lives, most of us don't have room or time left to get excited about things like that. We're too busy focusing on the here and now - and we love our "kids" for the adults that they've grown in to.
Until recently - I passed over all the Facebook statuses, Tweets, and news articles that talked about research because I didn't think they had anything to do with me, my son, or our community.
Originally posted in Feb 2014, part of The Road's social theme.
Monica and David, winner of several documentary film awards including Best Documentary at the Tribeca Film Festival. Have you heard of it?
The film follows Monica and David, both of whom have Down syndrome, from just before their wedding to just after their one year anniversary. The documentary includes real time video of their day to day lives as well as interviews with Monica, David, and people from their families.
Life on "the road" of caregiving for adults who have Down syndrome.
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