There was no luck involved.....

[timer lady]

I've read comments to the effect that we were "lucky" to get the services we receive in this home & for wm at group home.

There was no luck involved...my children are disabled, hover between 3 & 5 years emotionally; are extremely vulnerable in the community - at high risk for re-victimization.

kt & wm's GAF scores fluctuate between 20 & 40 on any given day/doctor's appointment. That's not real high functioning.

kt goes dissociative on a semi regular basis & as many of you know the crisis team is here at least once a week; wm is volatile on his best days.

I've worked my behind off to get a team of professionals who can & do work with each other. Who have our entire family's interest at heart. A team that is willing to work with both kt & wm to achieve their highest level of functionality. And with all this help & all these interventions it's still a real crap shoot.

It's not a walk in the park to have in home help day in & day out. There is little to no privacy yet it's what needs to be done. This being a family of different addresses is just a need to reframe in my mind a very ugly situation.

Let's just say, I'm not feeling terribly lucky.

 

[crazymama30]

The services you have are very needed, I cannot even begin to imagine what you go thru. It must be very difficult to have all those people in your home. I am very protective of my privacy, and would have a hard time. You are not lucky, though you are amazing. The Tweedles are very lucky to have you.

 

[klmno]

It sounds like you need ((HHUGGSS) in a big way and some relief. Can you take any sort of break to relax? I'm having trouble doing that too right now, so I just talk to myself!!

 

[flutterbee]

I hear you, Linda.

I think we are all fortunate to live in a time and in a society in which the mentally ill are not just hidden away and that such services are available to those that need them. However, that is little consolation given the history of your children and the extent of their daily struggles.

by the way, what are GAF scores? I'm not familiar with that term.

 

[timer lady]

I apologize, ladies. I truly do. I've read the comment "lucky" far too many times over the years - kinda snapped when I read it again last night (sorry Stella).

Heather, GAF (global assessment of funtioning), is THE indicator in my state of what services are available to the non institutionalized disabled individual. The diagnosis means little here - it's based on the GAF.

I love the tweedles - I truly do. There are days I don't feel very lucky; see very little improvement even with all the interventions & therapies in place. I get blue.

klmno, appreciate the hugs - sorely needed today.

I'm generally a practical, reasonable & fairly reality based woman. I deal with what is ever sent my way. And I feel in over my head - or at least did last night.

Again, I apologize for the tone of this thread.

 

[busywend]

No problem, Linda. Things gets to all of us now and then.

I sure recall many times you not getting what you needed and people standing in the way of treatment for your tweedles. No, it certainly is not luck. It has been a long, hard battle to obtain the services you have today. I recall this board sitting on your shoulder many, many times.

HUGS!

 

[On_Call]

I'm adding a {{hug}} this morning, too, Linda.

I know what you mean - I wish that none of us were in the situation we're in where we (even for a moment) consider ourselves lucky for some of the services and staff we encounter. I have caught myself saying that we were lucky we met Dr. So-and-so - and then I think "yeah, lucky". Wish I never had the need to meet Dr. So-and-so, etc. Or, that we're lucky that the psychiatric hospital is only 45 minutes away, so that when difficult child is inpatient, it is easier for us to visit than some of the parents we meet who have to travel 10+ hours to get there.

In our county, services are sparse, so I guess in our situation, we were fortunate to even be considered for the services to begin with - although not lucky that we are deemed appropriate for the program - that's for sure.

I totally understand what you're saying.

 

[nlg319]

No need to apologize. I too, respect and expect my privacy. Those 2 little Tweedles are LUCKY to have you and husband!

 

[SearchingForRainbows]

Linda,

in my humble opinion, there is absolutely no need to apologize. Honestly, you are in a very difficult situation. I think you are very loving, strong, wise, and practical. I always learn so much from reading your posts.

I know I wouldn't be able to handle people in and out of my home all of the time. I know I would resent it. I'm a very private person. I resent the invasion of privacy I have now and it's nothing compared to what you live through each and every day.

I know, and this isn't even on the same level as what you go through, that I resent when people tell me how cute difficult child 2 is. He might be cute if he were 3 - 4 years old, BUT, he is 15 years old!!! His behavior IS NOT CUTE!!! :grrr:

No, you are not LUCKY!!! You have worked extremely hard to get the help that you have. However, I do agree with the others who feel that kt and wm are LUCKY to have you!!! WFEN

 

[Alisonlg]

Passing along some :::: I think we could all use more hugs.

 

[dreamer]

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.

 

[guest3]

<<<<<<<<<<HUGS>>>>>>>>>

 

[Just keep swimming]

Linda,

I know you don't like being thought of as doing amazing things for your tweedles, but darn it girl you ARE! I, too, learn so much from reading your posts, positive and negative ones equally. You are the wise, patient, warrior mom to the max type of person I dream to be one day!

But, I also get the "lucky" part. I hate when people say how "lucky" Aly is to have us, "where would she be without us" etc. Call it "luck", (or maybe just plain dumb luck, lol), kharma, coincidence, what have you, we are now a family and trying our hardest to stay that way.

We all do our best to be the best advocates for our difficult children and wear that warrior mom/dad armor to the point of being pains in the buttootie. So, luck has a little bit to do with it all, but mostly it is just plain old hard work to get the help our kidlets need.

Many, many ((((((HUGS))))))!!!
Vickie

 

[totoro]

Oh we know you are not lucky in regards to what you are dealing with... I often boil as well when I hear that comment about myself!!!
I am lucky in some regards, but not when It comes to what my children are going through.
I am sure one day when my girls have services hopefully after many years we will finally have it all toether as far as help?!?! When I hear from someone just starting out, "you are so lucky to have all of those services in place" I will most likely feel the same way you do Linda...

There is no luck involved when you spend day upon day hour upon hour on the phone, talking to people interviewing, restraining, fighting, in hosptials, doctors offices all of this that is required of us.
It is our job, it is our duty...
Linda you are someone to Admire!!!
Sending hugs


I cried when I read K's GAF 35... it has dropped since then.

 

[judi]

Linda - I want you to know that I too am sending hugs. No one is lucky when they feel that the internet is their support system - lol!.

I thought for awhile before replying. I have to say that we did everything we could in the way of help for our son when he was young. However, these kids all grow up (physically at least-lol) and the adult world is not so kind to them. My son is now 22, he has no job, no income, is into drugs, etc., and believe me if he doesn't want help, there is no one that's going to force it. In the adult world, few people care. Its only the "nice" mentally ill folks that get assistance in the adult world. My son isn't nice: he doesn't bathe much, he is very thin and probably malnourished, he doesn't work, he swears a lot and he's not very polite either.

However, he is still very much loved by his father and mother. It is not a fun life that he leads. And...there is no amount of money that will make him get help either.

 

[meowbunny]

In this county, the attitude was pretty much that once an adoption was final, good luck on getting any services unless it is a physical disability or a child has well below-average intelligence. If there were services available and if there was a way to have your child qualified, you weren't told about them. You'd have to get lucky to find out what was out there. I certainly never did although I tried.

The reality is that our county just can't afford mental health services except for extreme cases and even then only for those in the lower-income brackets. The middle class had to find a way to fund the services for their children.

Pre-adoption is different. For the 18 months she was a foster child in my home, she had access to a tremendous amount of services. To give me time to transition, I was given an additional 3 months of services after the adoption was finalized. At that point, all services were dropped.

I was fortunate. A very close friend is a psychologist specializing in adoption issues. We bartered for each other's services. My daughter did qualify for MediCal but that was a complete and total joke. There were no therapists available that were willing to take MediCal and you cannot subsidize the payments made by MediCal. When it came time for an Residential Treatment Center (RTC) for my daughter, it was entirely out of my own pocket. My insurance as a self-employed individual is very limited for mental health issues.

School wasn't much better. It took 4 years of battles to get her qualified for an IEP.

I will admit that I would have had problems with someone coming into my home on a daily basis because I do value my privacy. But I would have given a lot to have just some of the services my daughter had as a foster child. So, as much as you hate to hear it, you are lucky that you are getting so much help.