Forums
New posts
Search forums
What's new
New posts
New profile posts
Latest activity
Internet Search
Members
Current visitors
New profile posts
Search profile posts
Log in
Register
What's new
Search
Search
Search titles only
By:
New posts
Search forums
Menu
Log in
Register
Install the app
Install
Forums
Parent Support Forums
General Parenting
There was no luck involved.....
JavaScript is disabled. For a better experience, please enable JavaScript in your browser before proceeding.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an
alternative browser
.
Reply to thread
Message
<blockquote data-quote="dreamer" data-source="post: 50882" data-attributes="member: 1697"><p>I just have to reply. </p><p>In many geographical areas, there are no services to be had, no matter HOW disabled or needy a person might be. </p><p>When I first began this journey dealing with mental illness, there was precious little help to be found, very few medications, even a diagnosis was hard to get, no matter HOW symptomatic a child was. (heck even in adults it was no walk in the park)</p><p>While deep in the trenches, dealing with my husband being very ill, and trying to raise 3 kids, 2 of whom were disabled, and working double shifts at work, I also advocated, lobbied, testified. </p><p>Many of us with older kids argued and fought tooth and nail and participated in research studies and clinical trials. </p><p>It was thru our hard work and efforts that there are programs that are supposed to help the children and the families of mentally ill children. </p><p>I worked thru NAMI and thru our county mental health board and also with CABF as we went to county board meetings, - to the state capital and to Wash Difficult Child to bring help to people. </p><p></p><p>There is also a shortage of specialists who work with mentally ill children, with very long waiting lists in so many geographical areas. Even after a very abnormal MRI my son sat on a waiting list in Chicago for a neurologists appointment. (almost a full year) 2 of my children and my husband were on waiting lists</p><p>almost TWO years for neuropsychologist evaluations, even after being referred countless times by tdocs, psychiatrists, schools, peds and the ER. ANd even then we had to travel. </p><p>Our county mental health provider, which for years was the only place at all in our entire county to get mental health help for children went without a psychiatrist at all for well over a year.</p><p>Sadly, going out of the county to try and seek help was often met with "you are out of our service area" </p><p>Even after qualifying to recieve respite and homemaker services here, it is not uncommon to sit on a waiting list to GET staff for a year or more. </p><p></p><p>My husband has not had a GAF over 30 in 18 years. Often his GAF has been 10-20. My oldest difficult child has never had a GAF score over 30, hers has often been below 30. Yes, the VA system considers a GAF below 50 to be disabled. I believe soc sec considers a GAF below 55 to be disableing.....but people cannot get services that do not exist in their area. People cannot get careproviders where there are none working. And for those people whose income is just enough so they cannot get help- often they cannot AFFORD the cost of help even if there IS help there to be had. </p><p></p><p>So, yes, there is some degree of luck to it all. ANd there is some of us who worked hard to get services in place for people. Some of us who did sit on boards and travel and lobby and stick our poor kids in trials and studies to try to make drugs available and diagnostic tools and such. SOme of us did do those things so others could benefit. </p><p></p><p>I still have to sit here and wonder how in the world I managed to get to the Pres Com for Mental Health - IIRC in 2002? I was scooterbound, and took the train, had no advance notice that I had been accepted to testify, had no help, but somehow got my scooter to train station, got on a midnite train to city, not even knowing if the stops I needed were handicapped accessible....LOL- got in a cab downtown, and made it barely in time to testify at 8 am. Trusting my respite worker made it to my house to take care of my kids.........(our respite worker was VERY unreliable)</p><p></p><p>I remember sitting so many times in county board meetings, on little sleep due to a rageing difficult child and in between shifts at work arguing that families with difficult children NEEDED respite, we HAD to have respite. We needed alternate school situations, we needed 1-1s for kids who could attend regular school. </p><p></p><p>And sadly, even still, many of us do still have to travel great distances to get our kids the docs they need....many of us do have to sacrifice for the financial costs......a few even still have to fight for a diagnosis. </p><p></p><p>Yes, there is some luck to it all. Even with the huge amounts of effort energy and financial resources we toss out, it still also takes some degree of luck.</p><p></p><p>And there are some days I wish I had NOT lobbied and advocated....some days I wish I had NOT permitted my child to participate in research studies and clinical trials etc. Ah but, that is all another story for another day.</p></blockquote><p></p>
[QUOTE="dreamer, post: 50882, member: 1697"] I just have to reply. In many geographical areas, there are no services to be had, no matter HOW disabled or needy a person might be. When I first began this journey dealing with mental illness, there was precious little help to be found, very few medications, even a diagnosis was hard to get, no matter HOW symptomatic a child was. (heck even in adults it was no walk in the park) While deep in the trenches, dealing with my husband being very ill, and trying to raise 3 kids, 2 of whom were disabled, and working double shifts at work, I also advocated, lobbied, testified. Many of us with older kids argued and fought tooth and nail and participated in research studies and clinical trials. It was thru our hard work and efforts that there are programs that are supposed to help the children and the families of mentally ill children. I worked thru NAMI and thru our county mental health board and also with CABF as we went to county board meetings, - to the state capital and to Wash Difficult Child to bring help to people. There is also a shortage of specialists who work with mentally ill children, with very long waiting lists in so many geographical areas. Even after a very abnormal MRI my son sat on a waiting list in Chicago for a neurologists appointment. (almost a full year) 2 of my children and my husband were on waiting lists almost TWO years for neuropsychologist evaluations, even after being referred countless times by tdocs, psychiatrists, schools, peds and the ER. ANd even then we had to travel. Our county mental health provider, which for years was the only place at all in our entire county to get mental health help for children went without a psychiatrist at all for well over a year. Sadly, going out of the county to try and seek help was often met with "you are out of our service area" Even after qualifying to recieve respite and homemaker services here, it is not uncommon to sit on a waiting list to GET staff for a year or more. My husband has not had a GAF over 30 in 18 years. Often his GAF has been 10-20. My oldest difficult child has never had a GAF score over 30, hers has often been below 30. Yes, the VA system considers a GAF below 50 to be disabled. I believe soc sec considers a GAF below 55 to be disableing.....but people cannot get services that do not exist in their area. People cannot get careproviders where there are none working. And for those people whose income is just enough so they cannot get help- often they cannot AFFORD the cost of help even if there IS help there to be had. So, yes, there is some degree of luck to it all. ANd there is some of us who worked hard to get services in place for people. Some of us who did sit on boards and travel and lobby and stick our poor kids in trials and studies to try to make drugs available and diagnostic tools and such. SOme of us did do those things so others could benefit. I still have to sit here and wonder how in the world I managed to get to the Pres Com for Mental Health - IIRC in 2002? I was scooterbound, and took the train, had no advance notice that I had been accepted to testify, had no help, but somehow got my scooter to train station, got on a midnite train to city, not even knowing if the stops I needed were handicapped accessible....LOL- got in a cab downtown, and made it barely in time to testify at 8 am. Trusting my respite worker made it to my house to take care of my kids.........(our respite worker was VERY unreliable) I remember sitting so many times in county board meetings, on little sleep due to a rageing difficult child and in between shifts at work arguing that families with difficult children NEEDED respite, we HAD to have respite. We needed alternate school situations, we needed 1-1s for kids who could attend regular school. And sadly, even still, many of us do still have to travel great distances to get our kids the docs they need....many of us do have to sacrifice for the financial costs......a few even still have to fight for a diagnosis. Yes, there is some luck to it all. Even with the huge amounts of effort energy and financial resources we toss out, it still also takes some degree of luck. And there are some days I wish I had NOT lobbied and advocated....some days I wish I had NOT permitted my child to participate in research studies and clinical trials etc. Ah but, that is all another story for another day. [/QUOTE]
Insert quotes…
Verification
Post reply
Forums
Parent Support Forums
General Parenting
There was no luck involved.....
Top