The National Alliance on Mental Illness (NAMI) has released a report on the state of the mental health system in the United States. They used specific criteria to produce grades for each state.
How does your state rate??
http://www.nami.org/gtstemplate.cfm?section=grading_the_states&lstid=701
Unfortunately I live in a state that received an "F". It was no surprise to me. Thankfully we have an excellent team in place for Paige, but this was no easy task. There is a shortage of docs and basically no programs in place to help the kids if they are not hospitalized. There is not even something as simple as a social skills playgroup for kids.
I wonder what it's going to take to raise awareness and find solutions.
Why is it so uncomfortable for people to discuss mental health issues?
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My mother, as I've told you before, is a bipolar psychzophrenic. We are very active with NAMI in the state she lives in. We too have found that my mother gets next to NO help when she's not hopsitalized. Due to her illness she is disabled and received MediCare. They put a cap on the amount of times she can be hopsitalized. After her shock treatments in 1994 they told us they wouldn't pay for it again. She spent 5 months in the hospital and 19 months away from our family (half way homes) due to MediCare's unwillingness to do the best for her.
There is a stigma applied to the mentally ill. The reason? One you and most preemie parents know well - they don't look disabled. People figure they can just 'snap' out of whatever 'funk' they are in and go on like 'normal people' (whatever that is). You and I know this is not possible and not enough is done to spread this word to the general public (much like the harsh reality of prematurity's long term impact).
I wish I knew what the answer is - but our society has a very basic root - survival of the fittest and most people don't care to pay that much attention to those that need help.
My mother is unable to work or take care of some of the more basic needs (car maintenance, finances, bills etc.) and I know that if my father passes before she does she will end up living with me or be in a 'home'. That latter being the worst option for her mental well being, but possibly the best for mine and my family's.
Gee, this sounds alot like what parents of children with disabilities (meaning they will probably never leave home) go through, huh?
As a parent of a preemie and daughter of bipolar psychzophrenic this parallel scares me.
We have a genetic component - everyone in my mothers immediate family has some type of mental illness and my brother has ADHD - I have been spared and I feel incredibly lucky.
Is there a possible genetic component in your family too? My daughter is a 3rd generation preemie also...
Great post, Jennifer. There is mental illness among my immediate family as well. My sister is a classic paranoid schizophrenic. Interestingly, I do not believe it is genetic, however. My mother said that when my sister was born she was dx with hydrocephalus within a week of birth. The hydrocephalus spontaneously resolved and my sister appeared to develop normally. Birth trauma? I've heard that people with schizophrenia tend to have enlarged ventricles - since so many of our tiny preemies have brain bleeds (in the ventricles) is it any wonder that mental illness is so pervasive?
My mother said that my sister was quite labile as a child although managed to make it through school. My sister crashed in her mid-late 20's, was hospitalized for a bit, has been on meds since and seems to be doing pretty well, although not employed. She does live independently. My mother being of the "old school" just did not understand what was happening - the voices, hallucinations was more than she could handle . .she would tell my sister to "snap out of it." This was 30 years ago. She still does not get it - she tells people that my sister is very smart. Trying to explain that mental illness has nothing to do with intelligence falls on deaf ears.
What's changed? Well, not a whole lot. When my preemie daughter was FINALLY dx with NLD and Aspergers at age 16, the school poo pooed us. The so-called professionals said things like "if she would only try harder" . ."she is so smart, she could overcome this". .the guidance counselor - a real piece of work was an ASS toward her and toward me following dx. I'm sure that Munchausen crossed her mind. .when my daughter graduated from HS (barely) she sent her a card that said something like - you are going to be such a success in life, college is going to be such fun. .you are so far beyond most of the kids here, and you'll find your friendships once you hit college. Obviously clueless that NLD tends to worsen with age and responsibility, and Aspergers' and the it's classic social disorder just doesn't go away because one goes to college.
Yes, mental illness is a challenge. . .and especially when the person suffering from it has normal or above normal cognition.
In order to call attention to the issues around mental illnesses and the failures in addressing these issues, there needs to be
a) a Michael Moore film;
b) a celebrity with a mental illness or a celebrity advocate for a particular mental illness;
c) a wildly popular film with a wildly popular film star that exposes the issues.
You would think that depression and addiction would have opened a door, opened the mind of the general public about mental illnesses that have a life of their own--such that you cannot just snap out of it by sheer force of will. Not so.
Mental illness has never been the illness-de-jour, as diabetes or restless leg syndrome has been. The drug companies advertising for these issues helps bring them to the attention of the public. With public attention comes understanding, followed by tolerance and compassion. It may take a while for this cascade to happen.
In healthcare, even the mental health professionals--doctors, therapists and nurses--get paid less. The facilities are absent or neglected. It is actually thought to be a "dangerous" occupation to be in. There are "state institutions" for the mentally ill with gosh-awful reputations. Look at the armed forces scandals at Michael Reed, in the news just in the last few weeks.
The laws around "commitment" are scary. Families cannot help their family members get treatment, as jennifer and terri have said.
Abysmal on many fronts . . .
Solutions anyone?
Longshot, possible in my home town.
There is a squad of television journalists at a local TV station, who look for stories that are compelling. You'd have to be willing to go public, and have your loved one filmed. You'd have to be willing to be interviewed. The TV execs would have to deem the story newsworthy. In my area, that newsteam recently reported on puppy mills, calling attention to the abuses and lack of ethical treatment of puppies. If I was going to them to ask for coverage on child mental health issues, I would hark back to their coverage of puppy mills, and request that they do at least as much for humans as they attempted to to for the puppies . . . that would be my angle . . .
Chris and Vic
Jennifer wrote: "Is there a possible genetic component in your family too? My daughter is a 3rd generation preemie also..."
There isn't a genetic component with Paige, not that I'm aware of. We don't have anyone in our family with OCD or severe anxiety disorders. I do believe, especially after hearing from so many preemie parents, that it is directly related to prematurity, moreso the over use of steroids.
No other preemies in our family either. Well, not blood relatives anyway. My stepfather has a nephew that was born at 28 weeks, 23 years ago.
Terri wrote: "My mother being of the "old school" just did not understand what was happening - the voices, hallucinations was more than she could handle . .she would tell my sister to "snap out of it." This was 30 years ago. She still does not get it - she tells people that my sister is very smart. Trying to explain that mental illness has nothing to do with intelligence falls on deaf ears."
Old school is still the norm!
I can't even begin to count how many times we have been told that Paige is too smart to have BP or OCD! Even ADHD... "oh Paige can't possibly have ADHD-she reads at too high of a level. She is just bored and that's why she is acting that way!"
And, we have had docs tell us that she would just grow out of it!! Let me tell you... the older she gets, the worse it gets.
Ugh!
Chris wrote: "In order to call attention to the issues around mental illnesses and the failures in addressing these issues, there needs to be
a) a Michael Moore film;
b) a celebrity with a mental illness or a celebrity advocate for a particular mental illness;
c) a wildly popular film with a wildly popular film star that exposes the issues."
Oh so true Chris. I remember when Brooke Shields started speaking about her experience with postpartum depression. Although I never experienced it, I sure knew plenty who have. I was thrilled that she was using her fame to get the word out. Even when Tom Cruise spouted off against her issue on the Today Show, I was glad because it meant more attention. Now we don't hear anything. Tom apologized and all was forgotten.
I think one of the problems (along the lines of what you mentioned) is that the media doesn't give it much coverage. But, to be honest. I am not sure I could expose Paige, on national television, to raise awareness. I would be too afraid of what that would do to her and how people would treat her.
I sure don't have the answers but feel that something needs to be done.
Chris & Vic said:
"In healthcare, even the mental health professionals--doctors, therapists and nurses--get paid less. The facilities are absent or neglected. It is actually thought to be a "dangerous" occupation to be in. There are "state institutions" for the mentally ill with gosh-awful reputations."
The hospital my mother was in when she had her shock treatments looked like something out of post holocost Poland. Just last summer she was in another institution and it was I who had to be her advocate this time. Just the 'family room' where I met with the doctors made me cringe. I really didn't want to sit on the furniture it was so gross.
There are many 'mental hospitals' in the state she lives in and they are all the same... disgusting.
Bi-polar disorder is profoundly genetic and it is one of the only 'disorders' that have that connection. My mother has cycled through all the different labels and so far Manic depression (Bi-polar) has stuck the longest and when she is treated as such she gets better... until the fall/christmas.
Although mental illness and preterm birth are not in my particular genome, autism/schizophrenia is in my family -- I have a half brother with these problems.
Bad as things are now, they were even worse when my brother was growing up. The psychiatric profession was then in the grips of psychoanalytic error -- which led to stupid and destructive treatments -- such as blaming "refrigerator" mothers for everything.
My mother (who at the time --late 1950s-- had been recently widowed and remarried)and had brought up three healthy normal children previously, but that didn't matter. The psychiatric profession was predisposed to see her as the villian. It didn't matter that that my step-father's brother had the very same symptoms as were being seen in my brother (from the moment he was born.)
Clearly this was a genetic biological problem.
Luckily, my parents were bright, strong people who quickly and humorously dismissed the psychiatric idiocy. I remember them howling with laughter over bits of idiotic "psychobabble" after visits to the child psychiatrist. (The visits soon stopped, but my parents felt they had to go through the motions of seeking help.)
Usually whenever something went wrong with anyone in our family, radiation exposure was suspected. All three of my parents (mother, father, step-father) worked for the Manhattan Project and they were a bit nervous about the possible consequences.
At any rate, it is interesting to see that my home state of South Carolina ranked higher in mental health services than does my current state -- California.
I wonder sometimes how much fear and ignorance has to play with the lack and difficulty of discussing mental health issues. The media and movies historicaly have portrayed those with mental illness as dangerous, evil ect..
When the truth is that the person with the mental illness is more likely to be on the recieving end of harm than initating it. I wonder too if people are uncomfortable discussing mental health issues because of the stigma attached to them and the fear of being excluded from social cirles if they come out and discuss their issues.
Thanks for the link. I am in a state that got a "B" rating (OH) which doesn't actually shock me. My boys have been incredibly fortunate to have the programs and assistance availible to them. Our 4 year old 30 wkr who has sensory processing disorder, ADHD, and Asperger's (along with a genius IQ) has been in public special ed inclusion preschool for the past year and he has made leaps in his social interactions. Our 2 year old 25 wkr gets PT/OT/Spech/feeding through MRDD and without the services and support from his therapy, we would be lost.
We are also blessed to have an excellent community for austic children. There are many local support groups of parents, therapy for the children, and research being done all within 15-20 minutes of us. Carson is pretty high functioning and extremely bright but his sensory issues and impulsivity are quite hard to deal with. The stigma of the "bad parent" or the "out of control child" for his behavior constantly follows us around but all of our resources are allowing him find new ways to work through his stimulation in public situations. Every child deserves to have the best resources, therapy, and availibility regardless of their location. It is truly demeaning for all of our physically and mentally ill children not to have the best chances at success and regulation. One day our gov't will get things right and start putting the important programs and people FIRST across the board.
More evidence is out on mental health problems in preemies. It is a study of 11 year olds in Sweden who were born at less than 26 completed weeks of pregnancy.
[Farooqi et al. "Mental Health and social competencies of 10-to-12-year-old children born at 23 to 25 weeks of gestation in the 1990s: A Swedish National Prospective Follow-up Study" _Pediatrics_ 2007;120:118-133.]
30% of the children had what are termed "thought problems" meaning they "hear things [which are not there]," "see things[not there]," "can't get mind off of [various thoughts]" "repeat acts," engage in "strange behaviors," have irrational "fears" and /or engage in "self-harming" behavior.
These are symtpoms of autism and the authors note a number of studies linking autism and schizophrenia to low birth weight and/or prematurity, particularly in children with visual impairment due to ROP.
I'll type up and post these references ASAP.
Here are the references in the article from Sweden on the connection between schizophrenia and/or autism and prematurity and/or low birth weight:
Cannon M et al. Obstetric complications and schizophrenia: historical and meta-analytic review. _Am J Psychiatry_2002;159:1080-1092.
Wahlbeck et al. Association of schizophrenia with low maternal body mass index, small size at birth, and thinness during childhood. _Arch Gen Psychiatry_2001;58:48-52.
Jones et al. Schizophrenia as a long-term outcome of pregnancy, delivery, and perinatal complications: a 28-year follow-up of the 1966 North Finland General Population Birth Cohort. _ Am J Psychiatry_1998;155:355-364.
Cederlund and Gillberg. One hundred males with Asperger symdrome: a clinical study of background and associated factors. _Dev Med Child Neurol_2004;46:652-660.
Ek et al. Relation between blindness due to retinopathy of prematurity and autistic spectrum disorders: a population based study. _Dev Med Child Neurol_1998;40:297-301.
Msall et al. Educational and social competencies at 8 years in children with threshold retinopathy of prematurity in CRYO-ROP Multicenter Study. _Pediatrics_ 2004;113:790-799.
In one of my posts above I wrote that 30% of the micropreemies in the Swedish study had "thought" problems. That was 30% according to their teachers' reports, and 20% according to parental reports.
Here is the full list of abnormal behaviors above the 90th percentile cutoff values that these children were reported(by parents, then teachers, then the children themselves) to have:
by parent report child was/had:
axious/depressed 27%
withdrawn 36%
somatic complaints 13%
social probelms 25%
thought problems 20%
attention problems 30%
aaggressive behavior 13%
delinquent behavior 11%
internalizing behavior 33%
externalizing 10%
by teachers'report child was/had:
anxious/depressed 23%
withdrawn 23%
somatic complaints 21%
social problems 21%
thought problems 30%
attention problems 24%
aggressive behavior 21%
delinquent behavior 23%
internalizing 25%
externalizing 18%
The children themselves reported only a 12% rate of any such problems.
Scholastically, 15% of the children in the Swedish study were in special schools or special classes. 59% (in addition?) were having "school difficulties" which meant repetition of a grade and/or use of part-time or full-time special educational resources (presumably in a regular school).
45% had one or more chronic conditions at age 11.
You bring up a good point Helen. Both my brother and I are preemies (32 and 30 weeks respectively) and we both repeated a grade before age 10... never thought to link the two before.
Our problems in school were vastly different (mine were social his were concentration) and my brother was diagnosed with ADHD at age 20 (despite being 'tested' for it throughout school)... but again there is the genetic mental disorder portion too.
Gosh, it's a lot to keep track of and not much you can do, which is a shame.
For all the success stories you hear, I promise that the majority of these children born extremely premature are struggling. I can’t tell you how many stories I was overwhelmed with while Caden was in the NICU of success, of kids who were “perfectly fine”. Only another preemie parent can understand how isolating it is to have a child such as this.
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Mikewilliams
South Carolina Drug Treatment
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