The Mindstorm

Internet Meme of Me - Working Mom of Special Needs Kids

2012-05-23T16:49:00.001-05:00

Join Me at Noon Central with the International Bipolar Foundation

2012-05-20T09:56:00.000-05:00

I'm hosting a webinar about childhood mental illness from the parent's perspective with the International Bipolar Foundation today, Sunday, May 21, at noon CDT. Join us at the link below:

https://www3.gotomeeting.com/register/244842766

Is It June Yet?

2012-05-17T09:14:00.000-05:00

I am so ready for this month to be over.

It's been quite a May so far for the family. It started out with a happy change - I switched jobs. I left a major retailer and went to work for a smaller company with better culture, better career opportunities, and better benefits, albeit with a longer commute. But I was happy to switch, and I've been settling in with my new job and new co-workers and responsibilities.

We've been agonizing over what do to about Tim when he turns 18 this summer, as he will age out of his current residential placement. We talked about bringing him home, but after much talk as a family, we all decided - Tim most of all, interestingly - that another placement closer to home, where we can work on transitioning him home with more home visits, was a better idea. Tom and I toured several and then took Tim to see one just 20 miles from home. And he loved it. Great location, nice campus, similar group home to where he is now, and a great vocational program. So Memorial Day weekend we check him out of ODTC, he stays home for the weekend, and then he checks in to the transitional unit at Allendale. He's excited to go, but will miss the staff and kids in his group home. Many of the boys he's been there with for the past few years are also aging out and moving on, so I think that is making the transition a little bit easier. At least, I hope so.

Then, this past Sunday - Mother's Day - The Girl and I were doing some yardwork. It was a beautiful day, clear, sunny, and we pulled weeds, planted some plants, and hung out with the dogs in the sun. I wanted to get the log holders that Tom built for us to hold firewood close to the house during the winter out back behind the shed for the summer. They are long, built out of 2X4s, and awkward, but not particularly heavy. The Girl picked up one side, I picked up the other, and we started slowly carrying them across the yard to the shed. She looked tired, so I told her we could put them down as many times as she wanted, moving just a few feet at a time, until we got them there. About halfway across the yard she put down her end, put her head back, and said, "I'm dizzy." Her eyes rolled back in her head and she swayed. I told her she needed to not hold her breath as we moved the log holder, and she said she needed to go inside to use the bathroom. I waited outside for her - 10 minutes - and she came back out, a little pale, but better. I asked if she had thrown up. She said no, and we picked up the log holder and began moving it again. We got it to the shed and she swooned and said, "I think I need some lunch."

We went in the house and I sat her on the couch, thinking she'd gotten a little overheated. She had eaten breakfast, but it was about 2 PM so we made a bowl of chili and got her a glass of water. After 10 minutes of holding a spoon at half mast, she put it back in the bowl and keeled over on the couch, her eyes closed. I figured she was trying to get out of yard work, but she complained, "I'm so tired." Her eyes were just half open. I started to panic. She'd never behaved this way before. I started thinking, maybe she's having a stroke. I asked her to get up and walk across the room to me, and she meandered, weaving her way towards me, eyes mostly closed. I asked her the alphabet, and she slurred her way halfway through. I called Tom - on his way home from a track meet in Madison - and said, "something's not right." I was thinking we might need to go to the hospital, and he agreed. So I scooped her up, plopped her in the car, and headed the 1/3 mile from our home to the local ER.

Fast forward six hours. The Girl was in an ambulance from our local hospital to Children's ICU, about 22 miles away, unable to stay conscious. Unable to speak. Unable to open her eyes. Unable to sit up. Blood work and a CT ruled out stroke and toxins, but since she was recently in a psychiatric outpatient program, an overdose could not be ruled out, even though Tom got home, tossed her room, and checked our locked up rescue meds for Tim. All accounted for, nothing unusual.

The Girl, sick of the hospital.

Fast forward three days. Three EKGs, an MRI of her head, Ultrasound of her neck (to check blood flow to her brain), and an EEG later, and we have a diagnosis. Frontal Lobe Seizure Disorder. Myotonic seizures, which are seizures without the limb movements of what people classically know as Epilepsy. The strange part is she was having them while in the hospital, before we all realized what they were, when she sat up too long. Her face would contort, just on one side, and it would be hard for her to speak. After a day of anti-seizure meds, she could walk and sit up without an episode, and they discharged her last night. We are keeping her home for a few days, watching her like a hawk, irritating the living hell out of her.

Tom sat on the patio last night, very pensive. He said, in hindsight, perhaps some of the behaviors we've seen over the past year or so were actually seizures. She would space out. Even her teachers commented on it. Frontal lobe seizures are known to change behavior. Hmmm. It would explain a lot, huh?

This Saturday we walk as we do every year for NAMIWalks Milwaukee. The Girl is coming with us - not walking, just observing - but she wants to see everyone, and Tim wants to see her. He's been nervous knowing she's in the hospital. I'm looking forward to it as I do every year. Ryan Grant is the honorary chair again this year, and he now recognizes Tim on sight, which is a huge thrill for Tim and, frankly, for me.

Next week we start the big move for Tim. I'm hoping for something totally uneventful, with no more excitement than disgust at the condition of his wardrobe. :-) Cross your fingers for us!

You Big Bully

2012-05-10T08:06:00.001-05:00

By now, I’m sure you’ve seen this picture of Alex Wilson, a young boy from Georgia with Cerebral Palsy who was left out of a multi-school choir performance. His teacher, seen conducting the school choir in this photo taken by Alex’s mother, couldn’t have missed him. According to her report, this isn’t the first time Alex has been marginalized by the choir director either. Alex is just the latest story in a line of heartbreaking stories about children with special needs being left out, ignored, or downright bullied by teachers and students alike.

A report presented at the Pediatric Academic Societies annual meeting this week reports that symptoms of anxiety and depression are strong in both disabled children and their parents when the disabled child is ostracized or bullied at school. The report studied over 100 children with physical disabilities and autism. The report shows that ostracism and bullying leads to mental illness, but what about kids who are already struggling with mental health conditions? What is the impact on a child whose primary diagnosis IS depression? Researchers at Arizona State University looked into this earlier this year. The premise for the study was that adolescents who are bullied have higher rates of depression, but they found that, while kids at risk for or diagnosed with depression are bullied more, children without depression as a diagnosis aren’t more likely to develop depression in their teen years simply because they are bullied.

Read the rest at The Balanced Mind Foundation.

Turn And Face The Strain

2012-05-06T19:31:00.003-05:00

There are plenty of quizzes on the interwebs that illustrate the stress that change can cause. Even the most well-adjusted person can be jarred by enough upheaval. Even happy events cause stress. I changed jobs recently. And while I’m thrilled to be with a company where I have more opportunity and a better culture, I’ve spent the last week coming home exhausted from the stress of learning a new company and a new set of teammates. Since I often deal with stress though sleep (my husband calls me a stress narcoleptic), it’s made for some early bed times.

Read the rest at Support For Special Needs.

Wordless Wednesday - Serenity

2012-05-03T08:00:00.000-05:00

What a Riot

2012-04-29T20:10:00.000-05:00

I remember April 29, 1992.

I was newly married, new mom, sitting at home from work with a 103 degree fever when the verdicts came in around 3 PM on Wednesday, April 29. I sat on my couch in Southern LA County drinking ginger ale and popping tylenol like M&Ms when the news broke in to say the verdicts were coming. When they were read, acquitted on all counts, I was shocked. I'd seen the video. Everyone had.

But I wasn't afraid. Yes, it was unfair, in my mind. It was unjust. And I knew there would be commentary and comment about the unequal measure of justice handed out to Black victims for days and weeks to come. I never fathomed what I'd see, live on the news, just 25 miles from my home, a few hours later.

Over the next several days, Los Angeles was a war zone. I couldn't return to work in Carson. By Friday, the rioting and fires had spread from LA to Compton and Long Beach, and my office was right between the two. My home went from being 25 miles from the violence to less than 5. I packed my car with photographs and a few sentimental items. The entire county was under curfew from sundown to sunrise.

Long Beach, April 30, 1992 Photo by James Drew/AP

My parents, another 30 miles south of my home, pleaded for me to bring Wonderboy, just 18 months old, and come to San Diego with them for the weekend, to get away from the smoke and ash and tension. I was still running a fever, but I loaded up the car, pleaded with my husband to leave work in North Long Beach, close to the rioting, and come with, but he decided to stay, defend his place of employment if needed, and look after our home.

When Wonderboy and I returned home three days later, order was beginning to be restored, but I was still frightened. I'd never felt unsafe in Long Beach or Los Angeles for that matter. But everything changed for me that day. LA was no longer a sunny mecca of opportunity. It was dangerous, impersonal, unfeeling, and unwelcoming. We left Long Beach in 1997 with a bad taste in our mouths. We hated LA. I can't say the riots were the catalyst for that disdain, but I know that I never felt positive about LA again after that terrifying week. I'd like to know that things have changed; that the racial tension that led to the riots has subsided. But I'm not confident they have. Rodney King, the victim at the center of it all, implored us all to get along. One day, I hope we can honor his words.

Time Is (Not) On My Side

2012-04-18T04:53:00.000-05:00

96 days.

That‘s how many days I have left until Tim turns 18. That’s how many days in a row I’ll be freaking out as we try and get things set up for the arbitrary change over from him being considered a child to being considered and adult. I didn’t freak out like this when my oldest, "Wonderboy", turned 18. For a neurotypical kid, what’s the big deal? At 18 they can work full time. They can move out and live on their own if they choose (he hasn’t, not yet). Wonderboy’s life was exactly the same the day after he turned 18 as it was the day before he turned. (Long story about the nickname, by the way; too long for this post).

Read the rest at The Balanced Mind Foundation.

Advocating for Personal Space

2012-03-27T15:04:00.000-05:00

It’s defined as, “the variable and subjective distance at which one person feels comfortable talking to another.” When it comes to a child with a mental illness, getting others – particularly grown ups – to understand the importance of personal space is often a cause of great anxiety. For my son, it is frequently a hypocritical conundrum. Tim is very vocal about his need for greater than average personal space from his classmates, teachers, and family, but invades the personal space of others without any thought. Out in public, his anxiety levels can cause his symptoms to flare, particularly in a crowd or standing in a line. So other than being a hermit, or living in a constant state of panic, or causing others to be uncomfortable, how do I teach my son how to advocate for his need for space, tolerate crowds, and respect other’s boundaries?

Read the rest at Special-Ism.

Four Years To Screw Her Up...

2012-03-14T10:30:00.000-05:00

She said I could post her picture.

I write a lot about my son Tim and his mental illness. 99.9% of my blog posts focus on him because one, he knows about my blog and thinks it’s “cool,” two, he’s fine with me using his name and picture, and three, his condition, childhood onset schizophrenia, is pretty rare. I don’t often write about my two other children, the oldest because, well, other than a raging case of sarcasm and a video game habit bordering on clinical addiction he’s fine, and the youngest because she would prefer I not use her name. But the last several months we’ve been consumed by the mental health issues of The Girl (her pseudonym).

Read the rest at Support For Special Needs.

A Tale of Grace...In a Cape

2012-02-18T20:22:00.001-06:00

She opened the door to her aunt's home, head down, eyes upturned, peering at me over the dark rims of her glasses. She eeked out a small smile - more of a grimace, really - as she looked at me, both friend and stranger, allowed me to awkwardly hug her, and asked me in to the place she'd been calling home for the past several days. Her aunt, welcoming yet understandably cautious of a 40-something year old woman who had traveled 900 miles to visit a sixteen-year-old she'd never met, graciously asked me to sit and made me coffee, although she never drinks the stuff. We sat there for a while, me explaining myself to a protective aunt who felt a little less cautious, and she regurgitating the events of the days she'd just spent, sitting along side her mother's hospital bed, waiting for her mom to die.

Her small frame was enveloped in a long, hooded, black, fleece cape with a bright red lining. The cape belonged to her aunt, before this began, but she wore it as if it was her shield, pulled tight around her, grazing the tops of her boots. She talked about school and the friends she missed. She lamented the pets that would now need to find new homes, as she couldn't take them back to college with her. She wrinkled her forehead at the caller ID on the phone, identifying that the caller was someone she didn't wish to speak to. She reassured me, without being asked, that her psychiatrist had been in touch with her daily, his voice, she said, "like human prozac," smoothing over some of the rougher edges of an experience I can't even begin to imagine. Just weeks before, her young life was heading skyward. She had begun college, a few hours from home. She was feeling hopeful and happy. She'd made new friends and was learning new things. Then her aunt showed up at her dorm room door to deliver the news that shattered the idyllic existence she'd created for herself.

She attended the wake for her mother later in the day with what she expressed as a nervousness of the anticipated crowd. But she arrived, still shrouded in her fleece shield, and accepted the hugs and sorrowful looks from people who knew her when she was small, but for whom she had no recollection. After a time, her friends, children no older than she, gathered around her to cocoon her from what was becoming increasingly uncomfortable. They shuttled her outside into the crisp evening air, pulling her cape around her, ever vigilant, ever protective. They broke rank for me, however, as I left the funeral home after meeting adult friends and relatives, and she hugged me, a real hug, and told me that my coming meant the world to her. I could barely speak as I responded that she meant the world to me, and I held my breath as I walked to my car, capping the tears welling up inside my head until I was out of her sight.

This morning I sat in the last pew of the chapel where she and her family and her mother's friends came to pay their last respects. With a heavy heart, I smiled my own grimacing smile towards her as she entered, her eyes searching the crowd before locking on mine. After the readings and prayers said to ask God to escort her mother to heaven, I walked by her, slowly, and we locked index fingers, for just a moment, but that moment was all that was needed for me to feel her expression of both sorrow and resolve. We shuffled in to cars and drove in procession to the place where her mother's ashes were to be buried, and I watched from a distance as she placed a single white rose upon the grave, with only a moment's hesitation before releasing the stem from her fingers. Then she stood, vulnerable, yet resolute, cape / shield still firmly affixed, and watched the others gathered there do the same. I departed as she headed off to a reception to spend time with friends her own age, driving in silence back to the base camp I'd made for myself to digest the morning and stand vigil, awaiting a call that she needed me, should she feel the need to make it.

The call came at 5 PM. I had resigned myself to the fact that it would be Sunday before she decided to engage the outside world again, but there it was, a note via Facebook. I had some trepidation about her request - to go home, to gather some things, visit her pets, and...marinate. The night before she had expressed both the desire and the fear to return there, understandably. But we went. She searched under every chair and behind every door of the duplex for her beloved cats as her aunt and uncle cleaned their bowls and refilled them. Cape still fluttering with her every step, she cooed to them and caressed them one and all, introducing each one to me by name, commenting on their quirks and how they came to be part of her family. I tried not to stare at the nebulizer and prescription inhaler on the coffee table, mere inches away from where her mother was said to have collapsed while trying to reach them. Once the cats were fed, she moved swiftly through the house collecting a random selection of possessions both utilitarian and sentimental - her Nook, the ashes of a deceased pet, a Playbill autographed by Billy Joe Armstrong, her first edition, autographed copy of the Complete Works of Robert Frost, an iPod. Once collected and boxed, we retreated back out to the driveway where she hugged me, another real hug, letting one heavy sigh escape before forcing herself back into composure. "It wasn't as hard as I thought it would be," she said softly, "but it was still hard." I reminded her that she has the right to express how she feels, and she made a mental note that she had to remember that. A second affectionate hug I received from her aunt sent us all on our separate ways, and I drove back to the solace of my hotel room to ponder what the coming weeks and months will hold for this stunning, complicated young woman.

Enough Said

2012-02-17T15:54:00.001-06:00

Courtesy of / created by my friend Marian. Amen.

Guest Post: Erika

2012-02-09T08:00:00.003-06:00

As much as it hurts, ain’t it wonderful to feel?

…

I’m not afraid.

I pushed through the pain

and I’m on fire.

I remember how to breathe again

…

Why must we fall apart

to understand how to fly?

I will find a way

even without wings.

Follow your heart till it bleeds

- End of the Dream, Evanescence

At the age of thirteen, I broke down and collapsed into a level of instability that would lead to months of indescribable pain, fear, grief and a sense of chronic hopelessness. I would be hospitalized (more than once) in a locked, inpatient psychiatric hospital where I would be put on heavy dosages of medications that ravaged my body and failed to fully — or even mostly — quell the demons that haunted my mind; I would lose my ability to function in an educational setting and, as a consequence, would have to be placed in an Intensive Outpatient Program; I would be alienated from my peers and thrown into a tormented state of social isolation during a time in which I was already awkward and insecure enough; I would become too paranoid to tolerate being alone for more than a few moments, causing me to require a level of supervision that made me feel as if I had been downgraded to the age of three and, with that, as if my dignity had been robbed; and, despite what I saw as my best efforts, I would struggle to stop myself from self-injuring, destroying property and slipping into nightmares of suicidal ideation, causing me to lose trust even in my own self. I would end up doubting — and for good reason — my ability to one day live independently, go to college, hold down a job or even make it past the age of 14. I would feel as if my life — past, present and future — had been brutalized and thrown away as if it was a piece of trash. The hopes and ambitions that I once held with such passion would be purposefully suppressed, as, in my mind, any hope of achieving them had long ago died and the reality that I thought would replace them was too painful to imagine.

That was all (a little over) two years ago.

A little over two weeks ago, I was driven an hour and a half and a state border away from home to attend the first day of New Student Orientation at the early college I would be attending for the next four years. At (barely) 16, I would meet friends who, like me, were tired of high school and yearned for a greater challenge; I would choose classes with titles such “Colonialism and Tribal Peoples” and “Life Histories”, along with more familiar names such as “Macroeconomics”; I would move into a dorm that, what it lacked in cell service, made up for with an amazing roommate; I would meet a boy — or two — who feelings would develop for; and I would adjust to the reality that I was a college student, 2 1/2 years early. In the midst of the excitement, those memories of crisis and hospitalization would seem startlingly distant.

Today, as I sit procrastinating and reflecting in my dorm room, it all seems a little bit (OK, quite a bit) surreal. Who would have thought that it was possible that I, the girl who was at one point convinced — was terrified — that she would die young of her own self-inflicted end, would get here? The girl who, for as as far back as memory exists, struggled to cope with the most minutia of everyday life? I certainly did not and, though family and friends spoke with optimism about the future, I could sense that even they too were losing hope in the possibility of me ever achieving a state of semi-normal existence. After all, despite being at an age in which I should have been asserting my independence, I was completely — humiliatingly — dependent on others to maintain something as simple to many as safety and, for quite some time, I was aware that I was only progressively deteriorating. Each day was a battle in a seemingly never-ending and exhausting war against myself in which I felt that I was bound to ultimately lose.

Then, slowly and without me noticing at first, my health began to improve. In the beginning, the steps forward were cautious and small, such as learning to tolerate being alone for not just a few moments; but a few hours at a time. Then it was ceasing to engage in the various self-injurious and destructive behaviors that I previously had. Eventually, I began to notice that the anxiety that once crippled me was no longer so disabling that I could not, for example, go to school, hang out with a friend or join an extracurricular club. For the first time in a year or so, I even noticed that I began reading — truly, truly reading — again, something I had once considered to be a treasured obsession; but had abandoned in the wake of my psychiatric storms. I was becoming myself again and, not only that, I was gaining (positive) parts of myself that I did have before The Breakdown.

It was at the end of my freshman year of high school, a year’s time after this process of regeneration began, that I first learned about the early college. I had discovered it after a night of disillusioned Google searching in which I was attempting to find an alternative to high school, a place that I found to be intellectually restraining. After a series of discussions with my mother, I sent in an application and was interviewed. I was told by my admission’s counselor that he wanted me there, that he felt I would be a good fit and that he would advocate for me. I waited, bent with anticipation. When the answer came back, I was told that I could not come in the Fall as I had submitted the application too late to get everything ready on time for the scheduled orientation; however, I was also encouraged to try again for January Admission. That time, I got everything in on time and, on a late December afternoon, I got notice that I had been accepted. While those around me acted excitedly, all I could manage was a sigh of relief; a sigh that stemmed from a relief so deep that I could feel it reverberate throughout my whole body and could feel it warm my core. After all the struggle that I had endured over the past few years, the acceptance was a validating “F**k You” to the world. I had won; it — all of it — had lost and been crushed under the stomp of my vindictive boots.

I still cannot believe that I am actually here…living it, breathing it and experiencing it. It is astounding to me how well things have turned out and, I am sure, it is for my family, friends and healthcare providers, as well. Furthermore, while I don’t know what the next four years will hold, I am beginning to allow myself to be optimistic, to hope and to dream; I am allowing myself to believe that I truly can find a sense of success and happiness one day, whatever that may mean to me at that point in time; I am, in essence, beginning to trust that, not only can good things happen to me; but that they can happen and not be maliciously torn away as soon as I dare I let my guard down. It is a good feeling.

For those still fighting in the trenches of the frontlines of this war, either in defense of their own sanity or that of one they love deeply for, I would challenge you to not to give up hope. Though your life may never be as it would have been had the demon that calls itself mental illness not touched and invaded it, that does not mean it cannot be a life in which you are able to find your own unique, adapted version of health, happiness and a successful, thriving future. It does not mean things cannot get better. You can have that life and things can better — you just have to be willing to hold on through the storms that rage on in-between. And, though you may not know me, I want to say that I believe — no, I know — that you can.

With Love, Hope and Sanity,
Erika The Strange

Do what you what you want, if you have a dream for better

Do what you what you want till you don’t want it anymore

…

Stand and face the unknown

…

Somewhere beyond the pain there must be a way to believe we can break through

Do what you what you want, you don’t have to lay your life down

…

Do what you what you want till you find what you’re looking for

…

Somewhere beyond the pain there must be a way to believe

…

Somewhere beyond the pain there must be a way to learn forgiveness.”

- What You Want, Evanescence

-----------------------------------------------------------------------------------------------------------
I "met" Erika when she sent me a letter that, with her permission, I turned into the most read blog post ever on The Mindstorm. Erika is anything but strange. She's thoughtful, caring, creative, intelligent, and beautiful. I feel blessed every day to have her in my life, and to call her my friend.

The Wheels On The Bus...Are Coming Off

2012-02-08T13:47:00.000-06:00

Tom and I just got home from six hours at the psychiatric hospital. Not with our son, Tim, who I often write about in this blog, but with our daughter.

We adopted two of our three children – Tim and our daughter ('The Girl', I call her on my blog, as she prefers I not use her real name). Tim’s mental health issues were a surprise, as we brought him home from the hospital 10 hours after birth, and we weren’t savvy enough to include mental health family history in the questions we asked of his birth parents. The Girl is another story. She came to us at age four from foster care, after being born severely premature, drug addicted, and cycling through approximately nine foster homes before ours, with a diagnosis of Reactive Attachment Disorder (RAD). We knew there would be issues. She’s come a long way, thanks to therapy and a more stable environment, but the years that Tim was home and seriously unstable took their toll, and two years ago her therapist said she was showing signs of PTSD, as we all were.

Fast forward to three months ago when she suddenly stopped eating.

Read the rest at The Balanced Mind Foundation.

It's An Honor Being Nominated for a Liebster!

2012-02-06T18:57:00.000-06:00

I've been running around like a loon for the past week with The Girl going into a day program, trying to get a new psych eval on Tim to send to potential 18 and over facilities and my oldest, Wonderboy, who has been in Europe on an internship, losing his work visa extension and being ejected from the country. Never a dull moment around the Hickey house, that's for damn sure!

I'm a little bummed I haven't had a chance to post before now about the cool award I was nominated for last week by fellow mental health blogger and mom raising a kid with a diagnosis, Julie's Mom! Liebster is a German word meaning "beloved," and I love this award because it circulates across the interwebs, given to bloggers by bloggers that like their stuff. So cool! You can read the rules off of Julie's blog.

And - if you haven't read Julie's stuff, GO NOW. She's a great writer, a computer geek like me, and she's British, so when I read her blog I hear a cool accent in my head, which for me, an Anglophile from way back, is a total bonus.

I get to nominate FIVE other blogs, so here it goes! Yeay!

More Than Words: Jennifer is a beautiful soul with three beautiful daughters, two of which are diagnosed with mental health conditions. I "met" Jennifer in a strange way - we had a Facebook friend in common that led me to her blog and after I saw her family's story on 20/20, I commented on her blog, and she commented back. Her blog is a diary of dates, appointments, and issues as much as it is beautiful prose about the highs and lows of her daughters and her life as she navigates the frustrating waters of doctors, RTCs, schools, and trying to keep things "normal" for her neurotypical daughter.

No Points For Style: Yo Adrienne! (I've always wanted to say that). A sistah-from-another-mothah in this journey of childhood onset mental illness, her blog is raw emotion as often as it is sarcasm and wit about the trials and tribulations of not only a blended family, but one with mental illness in the fold. Plus, her son has awesome taste in footwear.

Kidneys and Eyes: Julia Roberts - no, not that one - blogs about her life raising Quinnlin and Gage, and the dual challenge of them both requiring kidney transplants, and Gage's add-on mental health diagnosis. She's (almost) always uplilfting and handles her challenges with grace, wonder, and humor. Plus she takes awesome pictures.

Adopting Special Needs: GB's mom is a super-regular blogger, sharing the story of raising her adopted daughters Hope and GB, both adopted in 2010 and struggling with Reactive Attachment Disorder and, in GB's case, Bipolar as well. Some days, her supportive comments are all that keep me from repeatedly slamming my head in a car door until the whining stops.

Learning To Fly and Other Adventures: TwisterB is wicked smart and writes about whatever is on her mind or stuck in her craw. She has psychiatric demons of her own, but doesn't blog just about that. Sometimes you might get amazing poetry, other times a treatise on why she shaved her head last year. It's always a fabulous read.

And there they are! Five fabulous blogs that will brighten your day. I know they brighten mine!

Your Diploma Wasn't Issued By God

2012-02-03T14:23:00.000-06:00

I am gonna shoot me a psychiatrist one of these days, I swear...

So The Girl started the adolescent day hospital program today, after her assessment Tuesday when it was discovered she'd started cutting. Mind you, she started on Monday. She'd never, ever cut before that.

At intake Tuesday, the pdoc that heard info about The Girl OVER THE PHONE from a social worker who did the intake recommended she be enrolled in the self-injury day hospital program. I said no, because that is not her primary issue. Her primary issue is that she as a severe attachment disorder, possibly depression, and she thrives on negative attention. So the social worker enrolled her in the adolescent day program which covers depression, anxiety, and other issues. This is the same pdoc who, again, OVER THE PHONE, determined last November that The Girl should be in an eating disorder day program because she expressed that she was trying to become anorexic. Again, I said no, but took her to see a pdoc that specializes in eating disorders for 10 weeks who, low and behold, last week said, "you're right, she doesn't have an eating disorder or other body image issue."

I just got a call from a grad student working in the program and was told the pdoc - the one who'd only heard about The Girl OVER THE PHONE for 10 minutes, had met with my daughter for 10 minutes today and was transferring her to the self injury program. I said, "no, you're not transferring her." The grad student said, "but the doctor said that's your daughter's primary issue." I said, "no, it's not. She will not be attending the self-injury program, just like she didn't attend the eating disorder program last Fall." I explained her attachment disorder, her craving of negative attention, and her possible depression. And then I told the grad student that while the pdoc had spent a whopping 15 minutes with my daughter, I'd spend 13 years, so I think I know her a tad better. He put me on hold and called the pdoc.

5 minutes later he said the pdoc "doesn't agree with your assessment." I said, "then we're even." But he said the pdoc said she didn't have a problem with The Girl staying in the adolescent program, but she'd need to be assigned a new pdoc because she only does self injury and eating disorders. I haven't heard news that good in a long time. I requested Tim's pdoc because with him, we know what we're getting, and it's partnership and cooperation, unlike with this egotistical b**ch that didn't even have the guts to talk to me on the phone.

What To Do Now?

2012-02-02T08:41:00.001-06:00

Pain. It hurts. At this point you are probably thinking “duh”, but hear me out. I had to admit my son to an inpatient psychiatric hospital last Friday. There was no choice, really, he was a danger to himself and others. He was experiencing suicidal ideation, and he was kicking the crap out of me and his dad multiple times per day. Now, this isn’t the first time. That is what makes this so scary. Because I know. Or more accurately, I don’t know. He could be gone anywhere from two weeks to several months. All I can do is wait, and see how long it takes for them to stabilize him.

So, what will I miss in the next (insert amount of time here)? He will grow. He will come back taller then he left, this is a given. He will form attachments and develop relationships with various staff and other patients. Relationships that I won’t be there to watch, and laugh at the incredibly insightful and witty things that he says. He will mature. He will learn coping skills, and academic skills, and I won’t be there to clap and tell him how proud I am. All I have are daily phone calls and weekly visits.

Sometimes the emotional pain of what you have to go through to get your child healthy hurts worse than the physical pain he was inflicting before you sent him away, to others, for his own good. The pain of knowing others can help your baby better than you can will never fade.

Damn. This sucks.

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Jenny is the amazing mother of three, including K, 10 years old. Jenny blogs at You're Freakin' Kidding Me, Right? and is the creator of a Facebook - based online support group for parents of children with special needs, and she keeps me sane when my life goes off the rails.

Deja Vu All Over Again

2012-01-31T15:43:00.000-06:00

I swear I've had a post with this title before.

Spent the day back at the psychiatric hospital with The Girl, again. She's not trying to become anorexic anymore. No, someone noticed her arm today when her sleeve was pulled up, and up and down her left arm are cuts. She admitted to the school counselor that she has been cutting for a few days. He called Tom, I left work, and we headed down to the hospital for an intake evaluation.

Back in November she was evaluated because she wouldn't eat, and said she was trying to become anorexic. After that assessment, and 10 weeks of weekly therapy, the doctors came to the determination we did on day one. She's not anorexic. She hasn't gained or lost a single pound in a year. She does seem to have depression, however. So now, this latest issue is another sign of it.

Again, we decided on a day program, but this time not an eating disorder program or a self-injury program, but for depression and anxiety. She will start later this week, and they estimate will be there, every day, 8:30-2:30, for about three weeks. The depression, coupled with RAD, means she's harder to treat because she doesn't trust anyone and prefers not to share. I hope this helps get her / us on the right track. Time will tell.

Meanwhile, I am starting to wonder if the hospital is going to name a wing after us. It's not the sort of place I enjoy being recognized on sight.

The Lesser of Two Evils

2012-01-25T08:55:00.000-06:00

After an hour reviewing the recent issues with breakthrough psychosis, the extreme anxiety around the requisite blood draws to check white blood cell count, and the real issue of this being the least stable time of year, I heard Tim’s new psychiatrist say the words that I knew were the right decision, but vex me nonetheless: "let’s leave him on the Clozaril, add 100 mg at midday, and postpone any big medication changes until his impending move to an 18 and over facility in May."

I hate Clozaril. I hate it like I hate war and The Real Housewives. It’s that level of hate. Reading the insert of the side effects and five – yes, you read that right, five – black box warnings of possible side effects, like abnormally low white blood cell count, seizures, inflamed heart, diabetes, and hypotension with respiratory arrest, makes you wonder how bad the psychosis has to be to be willing to risk all that.

Read the rest at The Balanced Mind Foundation.

Until There Is No More

2012-01-23T07:00:00.001-06:00

Raising a child with mental illness is kind of like navigating your way through Times Square, blindfolded. In some ways you don't know where you're going or where you've been. Or what obstacles lie ahead.

I have been feeling my way around this for the better part of four years. And still, I can find no way out. It is the elephant in the room, the elephant in his head - large, angry and stampeding. But I cannot see it. Like a cancer, it grows in the dark, winding its way around my boy and refusing to let go.

They tell you: It is Hard. They tell you: It is Going to Get Worse. They tell you: But It Will Get Better.

What they don't tell you is: It Will Break Your Heart.

When it is your child who has lost touch with the real, who is tormented by things you cannot see, hear or touch, who is frightened by things that lie in the dark corners of his mind - you are helpless. You put on a neutral face, hope that he KEEPS telling you what is in his world. You walk, blank-faced into the psychiatric unit and try to make it okay to leave your child there. You leave him with his pajamas, a pair of slippers, a pocket full of quarters for the phone - and all your yesterdays. There is nothing to fill the sucking hole in your chest.

They don't tell you - It is Like YOUR Child Has Died. You miss the child you had, you do not recognize the one standing before you. He comes home, the demons are dormant. But he is an Impostor wearing the skin of the child you know. It will never be the same again. And you? Don't know what to do with that reality.

They don't tell you - You Will Feel GUILT. That in your secret heart, you do NOT like this child. He is mean, he is angry, he is abusive. He drains your energy, your emotions, your well being. In your heart of hearts, sometimes you hate it. This chaos, this life, this being who will not cease. That those feelings come with immeasurable guilt. You feel bad because you cannot connect with this child. That the disease makes it impossible. That you struggle. That you? Cannot make it better. You know that as a mother, your job is to keep your children happy, healthy and safe. Mental illness robs you of that role. And sometimes it robs your entire family of all three.

Until someone else challenges your actions. Your child. Your parenting. Until someone has the audacity to ask you:

"How much more of this are you going to take?!"

And that's when it comes flooding back. Your love, your protection - the Mama Bear hiding inside your broken heart. You wrap those arms around your broken child like a shield, and let him know you will do all you can. And you tell those others around you:

"Until there is no more."

For that is the depth of a Mother's love.

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A big thank you to my first guest blogger. Double Agent Girl is the amazing mother of an 11-year-old son. Together they are navigating the waters of childhood onset mental illness. You can read more about her and her son on her blog Between The Crosshairs.

Wordless Wednesday - SOPA

2012-01-17T07:00:00.002-06:00

Turning a Stigmatizing Experience Into A Positive

2012-01-16T17:21:00.004-06:00

Did you read over the weekend about Palmer Advertising in San Francisco, and the ad they put on Craigslist? No? Apparently they are looking for a business development person in the Stockton, California area and the ad, along with job description and required experience, listed this line:

"The successful candidate will have ... Sanity. If you are a prima donna, bipolar, or require anger management, please go to a big agency where you can hide in the crowd."

When Kristina Beard, fellow blogger and mental health advocate, alerted me to it this morning, I fired off an email to Mr. Palmer, explaining how his advertisement, while stigmatizing to persons with Bipolar Disorder, is also very, very illegal.

EEOC law states:

Title I of the Americans with Disabilities Act of 1990 prohibits private employers, state and local governments, employment agencies and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions, and privileges of employment. The ADA covers employers with 15 or more employees, including state and local governments. It also applies to employment agencies and to labor organizations. The ADA’s nondiscrimination standards also apply to federal sector employees under section 501 of the Rehabilitation Act, as amended, and its implementing rules.

An individual with a disability is a person who:

Has a physical or mental impairment that substantially limits one or more major life activities;
Has a record of such an impairment; or
Is regarded as having such an impairment.

In my email to Mr. Palmer, I cc'ed a few of his clients, including the Bank of Stockton, and The San Francisco 49ers President, Jeb York.

This afternoon I received a reply from Mr. Palmer, apologizing profusely. It sounds like he's done this a few times over the past few days. He said, "I have admitted it was wrong. I am not sure what else to do. It was a regrettable and terrible mistake."

So I gave him a suggestion. Reach out to the San Francisco chapter of NAMI and offer some free marketing services. That way he can help others learn about the damaging impact of stigma around mental illness.

And he agreed. He will. So NAMI San Francisco, let me know when Mr. Drew Palmer contacts you. And thank you, Mr. Palmer, for realizing the gravity of the situation, and your willingness to do something positive to keep others from making a similar faux pas.

Pdoc-Gate Update: Resolution and Research

2012-01-12T14:56:00.000-06:00

So - after that second email letter, and a phone call yesterday, and another phone call today, Tim will finally see a psychiatrist that, amazingly, not only works for the RTC but has her office on the grounds of the RTC Saturday at 1 PM. This doctor will be able to monitor him until they have a new staff pediatric pdoc. This one is not, but since Tim is nearly 18, she has agreed to see him and, more importantly, monitor him and his med regimen.

That's the good news.

The bad news is that, as of now, they do not have visibility into having a spot available for Tim in the 18+ group home. They seemed perplexed as to why we wanted to know now, six months before Tim's 18th birthday. It takes months of sending his packet to other RTC's, having them review if Tim is a candidate for their program, us and Tim visiting them to see the program, and them coordinating a move to get it accomplished. I told his current RTC today - it took us five months to get him into ODTC. There was also some semi-snide comment about there not being another RTC in Illinois or Wisconsin, to which I politely replied that there were three 18+ facilities within a 20 minute drive from our home, but thanks for the concern. So, our SASS worker - who is a godsend, by the way - is sending packets out, and we will start the process of finding a new program for Tim come the end of the school year in May.

I'm frustrated and sad by the events of the past week or so with the RTC. We have had much praise for them and their staff over the past two and a half years, save for some earlier caseworkers that were difficult to get a hold of . Tim has made progress there, and it has never been our desire to move him. But I was told before Thanksgiving that they had a new psychiatrist starting in a few weeks - and when that didn't happen (she didn't accept the position), I was never informed. Trust me - I would have had him see his old psychiatrist who has a history with him down here over Christmas if I knew that!

What further frustrates me is that the supervisors I talked to today were very terse in informing me of the solution. Not that I am concerned if their feelings were hurt by my directness in asking questions and, when receiving no reply, escalating. I'm not even concerned about the two nasty comments left on my last blog post, interestingly from readers in Oconomowoc, Wisconsin. Yes, I can tell. Did you forget what I do for a living??

And no, the comments won't be posted because, as I've said before, my blog is not a Democracy, and I don't post comments that are nothing but nasty to me. If you have an opposing view about my blog, share it in a respectful way if you want to debate. And, if you want to call me to task for escalating the fact that you haven't had a psychiatrist on staff for five months to The Illinois Collaborative, might I remind you that you should use this as a procedural learning experience. And that if you want me to recommend your facility in the future, you might not want to burn this bridge.

Latest Letter to RTC In No-Pdoc-Gate

2012-01-11T13:21:00.001-06:00

Greetings:

I understand you have made an appointment with a psychiatrist employed by your sister company for Tim this Saturday at 1 PM. I have a few questions I would like to ask:

1) is this the psychiatrist who will be regularly monitoring Tim until you hire a permanent doctor?
2) is this a child and adolescent psychiatrist?
3) what is the agenda of the appointment? If it is to discuss med changes, how will this doctor know what a med change should be after one XX minute visit?

My issue isn't that we don't have a doctor to make a one-time med adjustment. My issue is that there is NO doctor with ANY history of working with my child, and no PROSPECT of a doctor who will be able to build up the relationship with my child to know when a med tweak would be beneficial.

I understand you asked my husband if we were unhappy with the RTC. In general, no. Tim has been happy there, and has made progress. Our concern is that we were not aware you were STILL without a psychiatrist, and when my son self-advocated for a need to look at his meds, and then had a rage incident because there was no one to do that, YOUR STAFF CALLED THE POLICE. If my son had been arrested or injured, I would have held you liable and responsible. That is what has infuriated me.

My son takes dangerous, FDA regulated, powerful psychotropic medication as part of his treatment plan. And you have no one there who knows anything about it. I personally get phone calls asking if med changes might be in Tim's best interest. I am NOT a doctor.

This Saturday I was planning to pick up Tim at noon for a weekend home visit that Tony knows about, due to a dentist appointment Tim has with our dentist at home on Monday the 16th (since the dentist you use won't see Tim anymore). Since I'm coming up anyway, I will be attending the appointment with Tim, wherever it is. I would appreciate the information on where to meet you.

I would also appreciate an answer to our question about the likelihood of room for Tim in the 18+ group home come this summer.
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Sigh.

Just A Belly Rub

2012-01-09T09:47:00.000-06:00

If you’ve ever read my blog, you may know that, along with three children, I have four dogs. We didn’t plan on having four. It sort of happened by accident. They are all dogs that someone else had mistreated or didn’t want, collected over the past decade from three different states and at separate times. They are all different sizes, different breeds, different ages, and different temperaments. Rosie, our oldest, was easy to train. Lola was difficult, but once she got it, she has been very obedient. Chloe is 70 pounds of big goofball, and Sydney, the youngest and the smallest, is stubborn as nails. She reminds me a lot of Tim. She likes affection, but only on her terms, when she is ready for it. If you discipline her in a manner she feels is unfair, even if it’s not, she gets sneaky and destructive. She can spend days wanting to be near you, then just as many treating you as if you don’t exist. Strange people and places give her amazing levels of anxiety. But above all of this, she is the cutest little bundle of hair you’ve ever seen, and, what’s worse, she knows it.

Read the rest at Support for Special Needs.