PACDD Parents of Adult Children with Developmental Disabilites

10/27/2021

Today was such a chilly day. This message is for all those that cares for another human whom can’t take care of themselves. Pls show some love ❤️ and keep them warm and safe. God Bless

08/23/2021

https://expo.caringcommunities.org/

Welcome to the Expo! The World of Possibilities Disabilities, Healthy Aging and Independent Living Expos are designed to bring people with disabilities, their families, caregivers, service providers and supporting agencies all together in one venue. Our Expos provide an opportunity for you to enhanc...

07/03/2021

https://youtu.be/t8hjrmA_FFw
This past year COVID-19 kept Unique from getting out and getting exercise. She hasn’t been walking well on fop of her past surgery. Getting her out of the house now and giving her something exciting to do I believe motivates her to push a little harder.She really is trying.

God is working it out

06/29/2021

So today we were being interviewed the topic was disparities in the health care system for people of color with IDD(intellectual Developmental Disabilities)

06/29/2021

I’m alway asked how do I know what Unique wants we’ll look at that face how can you not know. She enjoyed her birthday 🥳 31 yrs June 23

06/13/2021

I’ve created this private group page for parents of Adult Children with Developmental Disabilities to have a safe place to share their journey, connect, and share resources.
You are not alone someone you don’t know is dealing with your same situation.
Tag a friend who may need this outlet so I can send an invite.
This page is different from the public page you are now viewing

06/13/2021

PARENTS Your Fears are Real
As a parent of a child with disabilities we have real fears that a parent of a non disabled child wouldn’t have. I say this because eventually your child will grow up and be able to fend for themselves. I’m not talking about when your quote unquote normal child is still needing your support.
The thing I want to discuss today is the fear of how staff will treat your child when no one is looking, when you are no longer here to advocate for them, when they are at the mercy of caregivers. It’s easy to close your eyes and hope for the best because you have so much on your plate that your already full up, so to add another thing that you don’t have an answer to is fearfully deep routed in the pit of your soul.
So I’m going to pose a question if this was your child/adult with intellectual developmental disabilities (IDD) If they couldn’t advocate for themselves would you send them to the hospital by themselves in an ambulance for the Doc’s to have to figure out what is wrong with them? This wasn’t a devastating emergency whereas they needed to be snatched up as a do or die situation.
Share with me after watching our video how would you determine what is wrong even if a note was sent with them stating that they wouldn’t stand up and appear to be in pain
Unique doesn’t talk. She doesn’t walk much, she doesn’t understand questions or commands. She is here at the Hospital from 7:00pm-3:30am
She wears a diaper which means she does not go to the bathroom without asst. She was asked for a urine sample.
She also needed to have an X-ray actually several X-rays in which I am the one to asst the attendant to keep her positioned in order to have the procedure don’t. She does not prepare her own food. She is here with no food (8Hrs) How would the emergency room staff know that she was hungry and how to feed her when she can’t eat everything. Whatever goes in her mouth she will try to swallow bones, wrapping paper in case you thought she knows how to remove these things she doesn’t. Why would an organization that she resides in allow her to be in this position. The Hospital said that under the circumstances that staff can accompany her but they didn’t. They did not ride with her to the Hospital which means they were not in the emergency room with her when I arrived. I had to wait 30 mins before I was able go back to be with her. Leaving her at the mercy of the EMT who does not know her to figure out her needs.
Your thoughts please am I over reacting.
What needs to be changed so this does not happen to someone else’s loved one,who is not here to advocate for them?

(Caregivers) What do you do when no one is watching you

06/13/2021

Unique and I are back together again
Shopping grabbing a bite to eat is some of the things we enjoy together.
This pandemic was a tough time as so many were not able to see their loved ones Unique and I included.
I missed our bonding time and pampering Unique while doing her hair.
Just because she doesn’t talk doesn’t mean she doesn’t enjoy the joy of pampering and looking and feeling great.