Thanks Thanks:  0
Likes Likes:  0
Results 1 to 10 of 10

Thread: Respite/SSAH

  1. #1

    Default Respite/SSAH

    I live in Ontario and my ds (almost 7) Has TS +++ (how many plusses can I give him???)

    Anyway, I am just wondering if there are other parents who have kids with TS and/or TS plus other diagnosis that have been able to qualify for Respite or Special services at home. My dh and I are waiting to have ds seen by Dr. Duncan McKinley in London but our local children's centre has done NOTHING for us (that's a story for another day). We love our son dearly and think he is awesome but we are tired and stressed - ds tics are in a huge waxing phase and consist of screaching and his usual stutter/repeat words but now it is all at the loudest volume possible.

    I am just so frustrated that ds has all these difficulties but I keep getting told by professionals in our community that his issues are Mental Health and thus we do not qualify for any supports.

    Can anyone share a success story? Or are there others out there just as frustrated as we are?

  2. #2

    Default government programs/support

    So should I take the fact that there are no responses to mean that there are no parents out there that have children who qualify for and/or receive some sort of Respite, special services at home, ACSD etc etc to assist with their child?

    If this truly is the case, this is sad. I'm not saying that kids with TS necessarily need extra assistance but for my ds with all his comorbids put together we are really struggling and so is he. I find myself wanting to bang my head off the wall in frustration because everyday I assist families who have children with "developmental" rather than "mental health" issues apply and receive funding for 1:1 support and I can't even get my foot in the door.

    With what we know about early intervention, prevention and where so many kids with long term mental health issues end up, why isn't more being done when they are young???????

  3. #3
    Join Date
    Jan 2004
    Posts
    557

    Default Respite/SSAH

    Hi Mom2spiritedboy:

    I have heard (grapevine only) of some children with TS whose parents have received some sort of respite support, however, I am not sure what issues they were dealing with. I have sent some queries out to people who might have some more information and to the National office to see if we can find you some more information.
    Cathy
    Forum Moderator
    TSFC Homepage

  4. #4
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Respite/SSAH

    The closes thing we have received in support is a shadow at school.
    With multiple disorders and the frustration of a short attention span and melt downs it has been helpful.

    I do not know however, what my son will be provided when he returns home (Ontario) this fall.

    A shadow takes a big piece out of the school budget and I am not sure if they can afford this option here in Ontario. IF it is possible you never know, by experience if the shadow will be available the next year.

    I hope you have some responses to your concerns...
    PJK

  5. #5

    Default Assitance/Respite

    Hi PJK

    We are very fortunate as our ds has Educational Assistants (EA) at school full time. In today's day and age this is a rare thing so we know to be thankful, however, the school really did not have a choice as this is one of the times that our ds propensity toward doing everything in a "big and boisterous" way has paid off for him

    However,my questions and concerns at this point are more on the home front. we are just finding ourselves getting worn out. Particularly when ds tics are in a huge waxing stage (which we know means he is stressed to the max) and he is like a "live wire". Of course, ds has much more going on than "just" TS which we are trying to get to the bottom of. I just find it amazing, and not in a good way, that because someone in the Ontario government has decided that families with children with "developmental" and physical delays qualify for supports to have 1:1 workers in home but children who are pegged as having "mental health" disorders are not.

    Not to start a huge debate or to minimize what other families may be going through but it just does not make sense to me. i invite these beurocrats to come spend a weekend in my house. Our ds is dearly loved but that doesn't mean I have friends or family lining up to care for him so we can have a break.

    Also, ds has not been succesful at a ny community/group events so far. He really needs 1:1 support (at times, as opposed to the entire time). Yesterday we went for a walk and we met up with friends. without even realizing what was happening ds got carried away and followed these friends on his scooter, including crossing a road without me. He has never done this and knows the rules but it wasn't until he got to the library that he suddenly realized what he had done. And just envision it. There's this heavy set woman pushing a stroller frantically screeching her ds name and trying to catch up.

    Anyway, those are just some of the issues and not even necessarily the most concerning. I had just wondered if anyone else with a TS+ kid might have found a way to access supports in Ontario.

    Thanks everyone

  6. #6
    Join Date
    Jan 2004
    Posts
    557

    Default Respite/SSAH

    I got some info back from National. Sorry for the delay in posting it -- it has been hectically busy the last few days.

    Ingrid (at National) recommends you look at www.respiteservices.com. Right now this is just for Toronto, but they are expanding to all of Ontario.

    Apparently some people have received information or help through Community Living and Extend-a-Family.

    Hope that helps.
    Cathy
    Forum Moderator
    TSFC Homepage

  7. #7

    Default Respite/SSAH

    I think it is an outrage that they are putting TS under 'mental health' issues. Don't they know it is a neurological disorder, and has nothing to do with anybody's mental health? That is no better than being pegged at being demon possessed (yes, a couple of people in my own family have said that they think that my problem is at least partially caused by demons ).

    I hope you will be able to get some help!
    German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

  8. #8
    Join Date
    Sep 2005
    Location
    Georgia Chapter of the TSFC
    Posts
    272

    Default Respite/SSAH

    In the United States (united how?) we have actually caught schools putting TS+ kids (including some with ADHD/OCD but no tics) into BD (behavior disorder) classrooms. Well guess what? Their behavior got WORSE! BD kids set up the neurology in TS+ kids. And TS+ kids give the BD kids something to react to, to be BD about. Oh, man, what a joke with no funny in it.
    Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
    http://www.facebook.com/tourettetiger

  9. #9

    Default Respite in Ontario

    Well I had a meeting at out local Children's Mental Health centre to discuss the complaint I have lodged with them and the Ministry. Looks like things may finally get under way to support my ds and our family. Part of that should be the centre assisting us in accessing some of the "limited Mental health respite dollars" recently introduced to our region. I finally felt like people were listening and for my sanity I have to believe they meant it when they said they want to learn from my family's experience to ensure this doesn't happen to other families.

    Soon as things in my own home calm down I am going to tackle the whole "mental Health" versus "developmental" distinction with the Ministry that is really creating a giant void for many families to disapear into only to resurface when their children are in the midst of adolescent crisis and the wounds are so deep they may be unreparable.

    Ahhh! My blood is boiling right now. I can't believe how many parents I am in contact with now that were initially denied any supports and then their children were later diagnosed with some form of Autism and suddenly they were eligible for Respite and Special services at home. DId their children or families change? NO - simply the category they fit into shifted.

    Okay - I will stop my rant now.

    Thanks everyone

  10. #10
    Join Date
    Sep 2005
    Location
    Georgia Chapter of the TSFC
    Posts
    272

    Default Respite/SSAH

    In Georgia we have about 185 counties. You can put a child with a Learning Disability in a car, and drive across the state, and every once in a while, suddenly POOF they are not LD any more. The counties define LD in Georgia. Huh? Did this rule come from a stork on LSD?

    And, don't forget that half the folks in the TSA and TSFC are finding a good way to refocus their ANGER at the systems that messed with them or their children. I am not talking about NO help - I am talking about hurting us or them.

    --------

    I wrote about 600 more words on the subject, but decided not only was I off topic, but it made a good article for my web site. So now here is the rest of the chitakwa:

    http://tourettetiger.home.mindspring...r1.verse1.html
    Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
    http://www.facebook.com/tourettetiger

Bookmarks

Posting Permissions

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