Results 1 to 4 of 4

Thread: Have a listen

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default Have a listen

    Here's an interview I did for the radio this morning - listen if you have time. Let me know if you are experiencing the same problems with supports where you live. We have a crisis here.
    http://www.cbc.ca/ottawamorning/2014...donna-thomson/
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Thumbs up

    ((((((Donna)))))) ~

    Thank you for sharing your interview with us, and CONGRATULATIONS again to you on the release of your updated edition of The Four Walls of My Freedom.

    Your voice is so soothing, calm, relaxing. I recognize your training and background in your articulation. It is so lovely to listen to you, where in today's world too many folks rush through their thoughts and words. The fast paced world of tweets and texts.

    You covered quite a bit in 11 minutes, but I know you could fill hours with your knowledge and experience.

    Jim and I were nodding along with you, and adding our 2 cents to your insight, as we listened. When you mentioned how stable and content Nick is now, Jim and I looked at each other and smiled. What wonderful words ~ "stable" "content" "happy."

    Wishing you all the best of everything on your book tour, Donna. And keep sharing your interviews and press with us, please.

    And once again: THANK YOU for all that you are doing to assist persons with disabilities and our elder population through your tireless advocacy. You are the voice for those who have no voice. You are a blessing to us all.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    Thank you, my dear friend. You are my inspiration. I can't believe how you have to advocate every day with no let up and you ALWAYS WIN!!!! xoxox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,043
    Blog Entries
    1

    Smile

    ((((((Donna)))))) ~

    The Mutual Admiration Society!

    I don't always win. I lost Michael's Fair Hearing against the school district for failing to plan his transition out of public ed into the community. Five issues, and I prevailed on two. It was bogus and political.

    I had FIVE (one for each issue) very thick volumes of documentation, well organized with tabs for each subject within the issue, and references. It was like my Masters thesis times five. Everyone attending the hearing received a copy of each of the five volumes. (That was quite expensive for me to reproduce!) My witnesses were the Ex. Dir. of our Area Board and our regional case worker, who went on to become the Ex. Dir. of the Regional Center.

    Because I had visited every Adult Day Program within the 15 mile radius of our home and reported in explicit detail on their inadequacies and mistreatment of consumers, I lost. I crossed the line, exposing the County's despicable warehouses for adults with DD.

    All of the staff at Michael's school turned their backs on me, and I had to take Michael out of his public ed program (and he was deprived of his graduation ceremony as more punishment), because I feared they would neglect him. I had volunteered at Michael's school for years; went on every outing, to every picnic, every school function. These teachers, aides, the principal ~ they were my friends. Until I challenged them on not preparing the way for Michael as an adult. Something they are required to do by LAW.

    This was an agonizing and time-consuming effort for me, which lasted nearly 2 years. Jim and I had just begun our relationship, and I was grateful for his support and helping care for our boys, so that I could work on the hearing documents.

    The day of the hearing, the administrative judge ruled. I was shocked, expecting a ruling after she'd reviewed my FIVE thick volumes of documentation. Maybe a week or two, and then a ruling. Nope. She ruled then and there against me.

    I remember standing up, after her lame excuse for ruling for the district on three issues. I was trembling with exhaustion and furor. I laughed nervously and said, "You're kidding. Right? I mean, you're not seriously denying my documentation on those three issues. The district is in violation of state and federal laws, your Honor. Please review my testimony."

    She looked at me sternly and stated, "I have ruled. We are adjourned."

    When it was all over, the Area Board Ex. Dir said, "They didn't want to set a precedent for the County, inviting other hearings on the same issue. They know they're wrong, and if the press published an article about your victory, they'd be swamped. They shot you down."

    Upon arriving home, I found Jim working on our new fence in the backyard. He could tell from a distance that it didn't go well, and by the time I reached him, I collapsed into his arms, sobbing, "We lost."

    All of that work. For nothing. Of course, I wanted to set a precedent! That was one of my purposes! I wanted to shut down these horrible "day programs," force the county to examine the conditions in these places and the qualifications of their staff. I wanted the best options for my son and his peers. No one else was speaking up for these folks, and I had to do it.

    I warned Jim at the beginning of our relationship that this was going to be a major issue with a lot of stress. I asked him, "Are you up for it?" And when he assured me that he was, I said, "Then fasten your seat belt, cause you're in for a rough road."

    Ha! Here we are 22 years later. It's been a very rough road. We had no idea then how rough it would become.

    I could have pursued this problem with the county after losing the Fair Hearing, but I had no more steam. I knew I was facing a brick wall. And then, I had to turn my attention on the IHSS program, which was in jeopardy from a major nursing home taking over through privatization. Bigger fish to fry.

    And the most important thing is that I lost time with my children, fighting for their rights and needs. I can never ever get back that time. And for that, I hate the System.

    I don't always win. But victory isn't always about winning. It's about trying. It's about effort in making changes for the better. It's about speaking up in support of others, who can not speak up for themselves.

    If I had simply let it ride and not confronted the county's failure to provide appropriate and safe environments for persons with DD, then I would have failed Michael and his friends and their families. I went in there fighting for those poor folks jammed into these awful places, with no windows, and nothing meaningful to do with their time there, not to mention disgusting food and filthy conditions. And I did that with an incredibly well presented argument. That was a victory.

    Eventually, it became evident that Jon and Michael were best served by me and Jim, and we gave them as many great experiences as we could until Michael's health declined. They weren't cooped up. We got out and about; we traveled for 2 weeks on vacation. The community could never have competed with the adult day (and night) program we gave to our boys. But sadly, others, who didn't have these options, were still and probably continue to be stuck in these warehouses.

    Well, it appears that I'm writing my memoirs here as my senior years continue to add up! Sorry for the long winded story! I think I have a point in there somewhere. I hope you can find it!

    Bless you, Donna, in your continuing efforts to change the System for our most vulnerable individuals.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Similar Threads

  1. THE HAIKU AND POEM CAFE: Sit down and listen to us...
    By tic chick in forum Poet's Corner
    Replies: 6
    Last Post: 07-29-2015, 11:27 AM
  2. OT: Come and listen to Bek the liver transplant kiddo singing :)
    By Paul from Australia in forum Child Neurology
    Replies: 1
    Last Post: 04-18-2012, 08:46 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.