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Why I Speak Up Against Stigma

Chrisa Hickey2 comments

I spend a lot of time on social media sites, Facebook and Twitter mainly.  Today I read two posts that show you why I continue to speak out about childhood onset mental illness, and why it’s important that, if you can, you speak out too.

First, on the Facebook page for a great blog called Raising Crazy, was this:

If you read parent blogs on mental illness, you may have run into this woman.  She also goes by the handle, “Warrior Mom,” and loves to tell us how evil we are for allowing our kids to take meds to manage their psychosis.

Later, on a closed Facebook group for parents of kids with special needs was this:

I think that says it all.

I shared my family’s story in two places this month.  First, HealthyPlace.com has started a new campaign called Stand Up for Mental Health, calling for an end to the stigma of mental health diagnoses and increased awareness and treatment.  I’m proud to be part of the roll out with HealthyPlace.

Second, SZ Magazine this month has an interview with me about my family and our struggle to get Tim diagnosed, treated, stabilized, and now, transitioned back home.  If you subscribe to SZ Magazine, it’s in the Winter Issue, in the mail now.

Finally, I will be on the Ricki Lake Show on February 6th, talking with Ricki and fellow moms of kids with severe mental illness Jennifer Wohlenberg, Adrienne Jones, and Kirsten, Pickle’s mom.  Please check your local listings for the time in your area.

If you want to share YOUR story, click here and share it with the Parents Like Us Club.

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transition

Coming Home – Eventually

Chrisa Hickey3 comments

“When is my next home visit?”

That’s the first thing Tim asks when we talk on the phone nightly.  Even the night of the afternoon Tom dropped him back at RTC after his holiday home visit, the first question was about when he could come home again.  And we’re working on the plan to start much more frequent home visits, more than the once a month he’s home now, as the transition to him coming home permanently.

I have to admit, I’m both excited and nervous about the prospect of finally bringing Tim home to stay.  Checking him into residential treatment, three and a half years ago, was one of the hardest things I’ve ever had to do.  It’s a complex web of sorrow over my child being away from me, guilt that I couldn’t figure out how to get him stable at home, and relief that there may be a solution to the nightmare that was all our lives the previous years.  I want him home, though. We want him home.  He wants to be home.  I’m just afraid of the lingering things we still need to work on, the things he’s picked up in residential, and a back-of-the-mind fear that he could lose his stability and we’d be back in the hell of 2009.

Tim’s never been able to handle family therapy.  He was admitted to the hospital once from a family therapy session because he melts down into a violent, depressed, whirling cyclone when we talk about him in front of him.  He can barely hang on during IEP meetings.  I’d like to start family  therapy as part of the transition, I’m just not sure if it will do more harm than good.

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Keeping Focus

Chrisa Hickey1 comment

When the Newtown tragedy happened, there was immediately a lot of Internet rhetoric around two topics: mental health care and gun control.  Being a proponent of both, I jumped into conversations about both and tried to steer the conversations to addressing both.  It took me about two days to realize – after the media started shouting about guns and Senator Feinstein vowed to re-introduce the assault weapons ban in the new Congress, and readers told me I diluted the message in this post – that the general public can’t focus on two topics at once.  That’s unfortunate, because this tragedy wasn’t caused by a single issue. There were several breakdowns that led to what happened at Sandy Hook Elementary School that terrible morning.  But now, in the wake of two weeks of guns, guns, and more guns in the news, with only a smattering of coverage on the woeful state of mental health care in this country, I am resigned to realizing that I have to make a choice and be a single issue advocate.

So no more talk here about guns.  We’re back to all mental health care, all the time.

And to that end, I wanted to let you know about a new blog I’ve started with some friends who are also bloggers and moms raising children diagnosed with mental illnesses.  It was inspired by a phrase I use here a lot, and suggested by friend and fellow blogger at RaisingCrazy – The Parents Like Us Club.  Because, after all, many of us found camaraderie and support on the Internet by finding other parents like us to share ideas, information, sorrows, and joys with.  The idea is that it is a collaborative blog – anyone who wants to post their story can do so.  If we are to affect real change, we must stand together as a block and let our legislators know that we have a voice and we’re not afraid to use it.

I’ve been talking to the legislative action people at AACAP – they have called on President Obama to hold a Children’s Mental Health Summit, and they are encouraged to read our stories at The Parents Like Us Club. I’d like to share them with senators and congresspersons during their legislative action day in May.  But I need your story to show how big the problem is.

So come on over to ParentsLikeUsClub.org and read.  Submit your story.  Do it anonymously if you feel you must.  But share it.  Your story may be just the thing that helps another parent feel less alone.  It may also be the story that finally gets a congressperson to realize that we need comprehensive mental health care reform and we need it now.

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Nothing Is What It Seems – Follow Up

Chrisa Hickey6 comments

Tom has been making a flurry of phone calls and doctor’s appointments over the last several weeks.  After two failed attempts to get Tim into the cardiologist for the echo cardiogram his doctor wanted, he finally went in last week and got it accomplished.  And when I say failed attempts, I mean failure of epic proportions   Tim just doesn’t refuse when he’s scared / nervous / irrational about why he doesn’t want to see a doctor.  He announces it with gusto.  Tom has tried twice since October to get him in for the echo.  The first time, Tim refused to go and paced / talked to himself / shouted and swore with arms flailing.  The second time, he picked up a microwave oven and threw it to the floor.  When he was finally calm enough – days later – to talk about why such a violent refusal, he said that the sticky pads they put on his chest for the EKG would rip his skin off, and there was no way he was going to let that pain happen.  I explained that the echo was an ultrasound – and what an ultrasound is – and there were no sticky pads involved.  Why oh why didn’t I think about this before he damaged kitchen appliances?  So he went.  No word on results yet, but it’s the holidays, so we will let it slide until next week.

Getting an EEG seems to be about as easy as getting nuclear launch codes. Tom has called several neurologists all who refuse to see him because they don’t treat mental illness.  Uh, no shit.  We’re not asking you to treat him, just give him a damn EEG and send the results to his shrink.  It turned into this circular argument akin to a Laurel and Hardy routine:

“We don’t treat mental illness.”

“I’m not asking you to treat him, just run an EEG that we can share with his psychiatrist.”

“What’s the EEG looking for?”

“Abnormalities that might explain his psychosis.”

“But we don’t treat mental illness.” 

“I’m not asking you to treat him, just run the damn EEG.” 

 You get the picture.  There’s a lab near us that will run one if the shrink writes an order.  So we’ll try that approach after the holidays.

Finally, we got the pdoc that treated him before he went to residential to agree to write up the psych eval for guardianship.  Again, you wouldn’t BELIEVE how many doctors either won’t or can’t.  The pdoc from his previous residential would but couldn’t because she’s not licensed in Illinois, just Wisconsin.  The pdoc from his current residential won’t because it’s a conflict of interest in his mind, since he’s the doctor at the residential that currently has him.  Tom had to do an end run around his old pdoc’s staff to get to him to even talk about getting his help because they wanted us to do an intake appointment with the doctor before they’d even discuss it, since Tim hasn’t seen him regularly since he was 14.  Instead, now, he’s agreed to read the paperwork between now and then and write up the form for the court.  Of all the pdocs Tim has interacted with in the past decade, Dr. D. still knows him best, so we are very happy about this development. Now to submit paperwork – and money to the court, and get this done.

I hope you all had a pleasant holiday.  Tim’s with us all week and is in very good spirits, which is a blessing.  His obsession with sock monkeys was fed by this gift from Santa – yes, those are 6 foot tall footie PJ’s!

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Women In My Corner

Chrisa Hickey2 comments

Last month I was honored with a special note of love when Adrienne, extraordinary mom and blogger at No Points For Style invited me into the Circle of Love at Kir’s Corner with this amazing blog post.

This Christmas Eve I get the opportunity to pass on the love to another amazing woman who’s touched my life. Julia, this is my Christmas gift to you, as thanks and as praise.  Thank you, Kir, for the opportunity.

Happy Holidays to you all. May you have a peaceful celebration, and may you be as blessed with extraordinary women in your corner as I am.

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Why?

Chrisa Hickey4 comments

I’ve been watching the news, joining in on discussions on social media, and reading the editorials and blog posts about the horrific events that transpired on Friday in Newtown, Connecticut.  I’ve spent three days in many different states of mind – disbelief, horror, grief, anger.  I’ve wept tears for the children and their teachers that have been lost.  I’ve sat numb, reading the statement by the shooter’s father, my heart aching for the confusion and sorrow and shame he must feel.  All this time, my mind keeps coming back to the same question.  Why?

Just moments ago I listened to President Obama address the nation from the high school in Newtown. I sat silently and listened to him read the names of those who, because of this unimaginable tragedy, are no longer with us.  And I heard him say that his personal reflections since Friday have given him resolve to find answers.  I have a few questions I would like to ask that I feel he and the rest of our government need to answer, if we are to find a way to prevent another Newtown, another Aurora, another Tucson, another Columbine.

Why is it, four years after passage of the Mental Health Parity Act, there are still no rules written on how the law is to be executed and enforced?

Why do parents of children with Autism Spectrum Disorders and Mental Illness have to become legal experts in IDEA law to get their local school districts to provide the services their children need to benefit from the public education to which they are entitled?

Why do we have to wait until our mentally ill teens prove they are a danger to themselves or others before they are eligible for treatment?

Why are we closing state mental hospitals and community mental health clinics in favor of spending more on prisons?

Why are we demonizing parents who have made the agonizing decision to resort to medication for their children?

Why are we still spending billions of dollars a month in Afghanistan, instead of spending it on the National Institutes of Mental Health?

Why are there 180,000 gun shops in the United States, but only 7,000 child psychiatrists?

Why is it easier to buy a gun than it is to get healthcare?

Why aren’t we funding Community Intervention Training for all of our police nationwide?

Why does Congress see healthcare as a privilege, but tax cuts as a right?

Why are we shouting at each other over whether abortion should be legal, when so many children that are already born are abused, neglected, and impoverished?

Why does anyone need a semi-automatic, high capacity clipped anything?

Why don’t we realize that it’s cheaper to invest in our citizenry than it is to bury or incarcerate them?

I can’t answer these questions all by myself.  There are complex issues behind each and every one. But how many more six-year-olds will we have to bury before we are ready to set aside our differences, sit down at the table together, and roll up our sleeves and solve them?

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We’ve Lost Hope: Guest Post

Chrisa Hickey5 comments

I was honored to be asked by Pete Earley, best-selling author and Pulitzer Prize finalist, to write a response on his blog to a letter he received from a concerned parent about their son, who struggles with both mental illness and addiction. Here is their letter:

Dear Pete, 

We have tried to get our son professional help. I think he has bipolar disorder, although he possibly could have schizophrenia. We know he has an alcohol addiction. He has not cooperated with hardly anything, and we’ve been unable to get him to go to our local mental health center, although officials there said he is eligible for treatment.

We feel like our hands our tied. The few times that we’ve gotten him to a psychiatrist, our son denies that he is sick, won’t take his medicine, and is extremely hostile to doctors for the short time he’s being seen by them. We’ve had him in our house for several months with his erratic moods and high level of anger. Yesterday he asked to go to a homeless shelter and he is now on the streets. If we try to visit him, he runs away. His dad and I are at the point where we feel resigned that there is no hope nor help for our son. The system has worked against us at every turn … and he needs help. People have recommended “he needs to hit rock bottom” and that we need to wait for him to *want* help. 

We simply don’t know what to do. Do we wait for him to hit rock bottom on the streets where we know he is not safe? In our view, the mental health network has been ineffective at best, and is rolling the dice with people’s lives. Now we can see how barriers in the mental illness system keep people from receiving basic services. This has been hell for his dad and me, and I’m sure worse for our son. If you have any advice please let us know. 

A concerned parent.

Read my reply on Pete’s blog.

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The Gap Between Reality and Congress

Chrisa Hickey9 comments

I’d like to ask you to imagine a scenario:

You are an adult, married with kids and a mortgage, employed full-time in a high stress job that involves a significant amount of travel, and you have been struggling with Depression for a protracted period of time.  Eventually your Depression symptoms cause you to seek professional help, as both your personal and professional lives are suffering. You enter a hospital for treatment and are diagnosed with Bipolar Disorder Type II, and begin treatment including therapy and medication, away from both your family and your job.

After about 75 days inpatient you return to your home for outpatient treatment. You are still unable to return to your high stress job. After about 21 days in outpatient treatment, you and your doctors determine you should return to inpatient treatment in order to stabilize your condition. You do go back inpatient and, to date, you’ve been back there about 2 weeks with, very likely, several more to go.

Now, let’s assume your job comes with average benefits of 2 weeks vacation, average HMO-type healthcare benefits and FMLA.

You’ve been off work for 15 weeks.  Your FMLA benefits kicked in week two, which required you to exhaust your vacation for those first two weeks, so you haven’t gotten a paycheck in 13 weeks. You still have to pay your healthcare premiums, though, so you’re out of pocket somewhere in the neighborhood of $1,500 for the employee portion of those 12 weeks, plus deductibles for medication, hospitalization, and outpatient treatment. Now that the 12 weeks your job is guaranteed by FMLA have passed, your employer has just informed you that you have lost your job, and now your medical insurance is COBRA, and you owe $2,800 a month for your insurance premium from here on out.

You can’t afford the COBRA without a job, and you can’t qualify for Medicaid because you still have your house – for now. So the medical bills for your second inpatient stay are piling up, and you will be behind on your mortgage in a month or two. Your doctors feel that it will take very likely the rest of the year to get your condition stabilized to the point where you can return to work, but he strongly suggests you take a much lower stress job.

By the time you are discharged, you are three months behind on your mortgage, you have over $20,000 in medical bills piled up, and you’re unemployed.  It’s Christmas, but you can’t afford anything for your children. Your spouse has had to cut back  hours on his/her job because someone has had to be there for the children while you have been inpatient for over 5 months this year. You’re facing homelessness and  bankruptcy in the new year. At least you’ll soon qualify for Medicaid, but since the doctor who has been treating you doesn’t accept Medicaid, you’ll have to start over with a new psychiatrist.

Now imagine you have great health insurance with no premium that covers the best doctors and hospitals in America. You not only still have your job, but you have been told you will keep it for at least another 2 years. You’ve been paid 100% of your salary for the 15 weeks you haven’t worked.

If you are Congressman Jesse Jackson, Jr, this is no hypothetical.  It’s your reality. And this is the great mental health care divide in this country.  

I hope, when Congressman Jackson finally returns to Congress, he fights for the rest of us that live the first scenario.

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Nothing Is What It Seems – Part Two

Chrisa Hickey8 comments

If you didn’t read part one, click here.

In 55 minutes, the reality we’ve been living in was questioned.  The prognosis we’d been operating under was debated. The fate of Tim’s future quality of life was mulled over.  This was all the result of one question posed by the doctor.

If Tim’s cognitive issues are organic – from birth – is it possible that the psychosis and behavioral issues are a result of seizures, and NOT Schizophrenia?

We discussed several studies (and here) that show persons with cognitive issues and psychosis often have seizure related disorders as well.  The doctor told me several things he’d learned over his 40 years in psychiatry:

  • Persons with Schizophrenia / Schizoaffective don’t typically have cognitive issues
  • Persons with psychosis where the hallucinations and paranoia are mostly around self-preservation – they report the voices tell them to run away or hit others or injure others that mean them harm
  • Persons with Schizophrenia / Schizoaffective don’t usually care about pleasing other people
  • It is not uncommon for persons with TBI or “organic” cognitive disabilities to have hallucinations and delusions, but most are rooted in seizure disorders
If you take those issues and compare them to Tim, Tim doesn’t fit the “typical” person with Schizophrenia.  He does have cognitive issues. His latest IQ testing pegs him at 62. His hallucinations and paranoia are mostly centered around self-preservation. He has an overwhelming desire to please.  He’s never had an EEG.  And, considering what we’ve discovered about our daughter over the past few months since she’s been treated for a frontal lobe seizure disorder, I understand how seizures can cause behavioral issues because I’ve seen her improvement in the few months since she began treatment (you can read my blog post on her transition from RAD to Seizure Disorder later this month here).
Now, the doctor didn’t have all of Tim’s history, and some things about Tim that I shared with him made him want to do more research.  Like the fact that Tim’s IQ has dropped from 92 to 76 to 62 over a decade, or the fact that Tim’s delusions do, from time to time, seem to be more “classic,” like paranoia about war breaking out, his fear of water being poisonous  or thinking that the CIA is following him.  I do have to concede that, more often than not, when he reports what the voices say, it’s “they told me to run away,” or “I have to hit (name of classmate here).”  When he’s struggling he reports that they tell him he is bad and they have told him to harm himself, which is more “classic” Schizophrenia, but those are less common than the simple self-preservation commands he reports.  
This doctor also expressed his belief that Childhood Onset Schizophrenia is very, very, very (his emphasis) rare, if it exists at all.  He actually caught himself saying it doesn’t exist and modified, I’m sure, for my benefit. I agree it’s rare, but he said this multiple times, and I tend to write off doctors that say something that I’ve seen in other children with  my own eyes is next to impossible.  That is a strike against him.  But he does firmly believe in Childhood Onset Bipolar Disorder, and I find it fascinating he thinks one is possible but not the other.  But I digress.
He left me with two thoughts.  One, in the time he’s been a practicing psychiatrist, the advancement of what his field understands about mood, thought, and intellectual disorders has progressed by about – his words – a half inch.  There is so much that we still don’t know.  So second, because of that, it’s worth exploring other options that may make Tim’s prognosis for a happy and productive live improve.  He recommended we find a neurologist and get an EEG, to rule in or out any type of seizures.  And we’re in the process of doing just that.  Tom started to get his hopes up a bit over the weekend that Tim could have some sort of miraculous reversal of symptoms and have a better life.  I am playing the skeptic.  We’ve tried everything else we have been able to try, based on everything we know.  I don’t see why we shouldn’t explore this.
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Nothing Is What It Seems – Part One

Chrisa Hickey3 comments
Image by Detlef C

Tim moved to a new residential program in June, as he would be aging out of his previous program when he turned 18 in July.  We were happy to find one we liked with a program similar to the one he was used to, much, much closer to home.  As with most residential programs, after he’d been there 30 days they had a cross-functional staffing.  This is basically a meeting with all the different types of professionals that interact with Tim to talk about his diagnosis, plan, and progress.  These typically happen again every quarter and, in our case, are required to be done and reported to the State to ensure that he still meets the criteria to qualify for his ICG grant.

The most recent quarterly staffing was this past Tuesday. Typically I interact with doctors and social workers and Tom handles school and IEPs, but I couldn’t get time off to attend the staffing this week, so Tom went.  When he got home he handed me a draft copy of the report they were to submit to the State and said, “this doesn’t look right, but I want you to review it.”  I got two paragraphs in when the top of my head blew off.

As part of the intake process and initial staffing, Tim was evaluated by the RTC’s staff psychiatrist. The second paragraph of the staffing report had the doctor’s diagnoses based on his initial psychological evaluation.  It wasn’t Schizoaffective Disorder.  It was Mood Disorder Secondary to Cerebral Dysfunction.  I had to look it up. Basically it means his behaviors and issues are due to some either organic or traumatic brain disorder or injury.  Tim does have an additional diagnosis of Mild Cognitive Disability, as his last IQ test at age 14 put his IQ at 62.

After I read about it, I had two burning concerns.  First, would this diagnosis mean he was no longer qualified for the grant that helps pay for his residential treatment? And second, how would a doctor that has seen Tim maybe 60 minutes over the past several months have the gumption to change the diagnosis that the two psychiatrists that have been treating him since he was 12 gave him?

Read the rest after the jump.


After Tom peeled me off the ceiling, and my compadres in the Parents Like Us club shared my irritation on our Facebook support group, I called and set up an appointment to talk to the psychiatrist in person this morning.  If you’ve read any of my posts before you know I have zero patience, so imagine what it was like to live with me yesterday.  But I held it together, gathered the last four years of psych evals, and set out this morning to my appointment with the pdoc.  Tom reminded me not to go in there with – his words – “guns blazing” if I want to hear the doctor’s reasoning.  That’s not my nature. I’m typically a hot-head right off the bat when I’ve been / feel I’ve been wronged and I calm down later. But this time I put on my big girl pants and decided to go in and tell him I had two objectives of the meeting:

  • Ensure he was aware that Tim is NOT a DCFS kid, and the diagnosis on the psych eval could make him ineligible for his grant
  • Hear the doctor’s rationale for the new diagnosis
I had a 30 minute appointment with the doctor, and ended up talking with him for an hour. And it was really quite interesting.  Right off the bat he admitted that the additional diagnosis he made of Psychosis NOS was omitted from the report in error.  He also admitted he didn’t realize Tim was an ICG (and not a DCFS) kid until I – The Mom – called.  He planned on correcting the omission from the report before it is submitted to the State. So – first issue handled inside of five minutes. The conversation we had over the next 55 minutes is what I am chewing over in my mind. 
I will post that tomorrow.
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