The Mindstorm

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.

*************************************

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.
---------------------------------
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.

Six Freaking Months

2012-01-05T13:24:00.000-06:00

Tim had a bad day yesterday, and I fear we're seeing the start of the usual Winter cycle. Apparently he asked for his PRN in the morning because his voices were "loud," but by 3:30 in the afternoon, they'd worn off. He got in to it with a new staff member at his group home, so aggressively that the guy called 911 for help because he couldn't get backup from another group home on the grounds fast enough. By the time the police got there Tim was calmer, and had another PRN.

Today, his caseworker called me to recap the incident for me, and to discuss Tim seeing a psychiatrist for a possible med change we've been discussing for a few weeks. After last night's incident, he should be seen by a doctor to review his records from last Winter when his psychosis was heightened to see if we need to tweak meds to help him through this Winter. BUT - the staff psychiatrist at his RTC retired three months ago, and they haven't found a replacement for her yet. His caseworker said they are contracting with Children's Hospital to fill the gap, but he talked to them today and the first available appointment they have is in March. MARCH. That will make six months since Tim, in a Residential Program for kids with mental health issues, has seen a psychiatrist.

His caseworker asked if Tim's psychiatrist from before RTC would see him, and I said I could call him, but I can pretty much guarantee he won't tweak any meds if Tim can't be around to be monitored. And then I told the caseworker to have an administrator from the RTC call me, because this is bullshit.

So, what do we do now? While I wait for the administrator to call me, I debate calling our SASS worker to start looking for another RTC for Tim. I mean, seriously - how can they go SIX FREAKING MONTHS without a staff psychiatrist? This is my least favorite part of Tim in residential - the feeling that I don't have any control.

Wordless Wednesday - DSM

2012-01-04T15:33:00.000-06:00

Tim: 315.31 / 318.0 / 295.70

Me: 300.01 / 309.81 / 315.1

Beginnings - Yours and Mine. Ours.

2012-01-03T10:51:00.000-06:00

As part of my plan to be more involved, more active, and more mindful, I signed up for NaBloPoMo for January, and the theme for January is "beginnings". So many ways to go with that theme, huh? So, since today marks the beginning of the work year 2012, and the first day of 2012 I've been able to breathe out of both nostrils, I thought I would start "beginnings" off reminiscing about the beginning of this blog.

I created my Blogspot account in 2009. At the time, Tim was beyond unstable. He was a raging, mean, unpredictable whirling dervish of negative energy and psychosis pretty much 24/7, and had been that way for a pretty long time. I was working for a small start up at the time that was based in Upstate New York, so I was traveling not only for meetings with clients, but back and forth between Chicago and Buffalo to the office, and the stress of worrying about Tim, Wonderboy, and The Girl, and whether Tom would be able to hold on while I was gone, coupled with me being on duty whenever I was home to give Tom a break made my Generalized Anxiety Disorder (a genetic "gift" from my mom's side of the family) go into hyper drive. I was having massive panic attacks in airports, sitting in meetings, and at home. After missing a flight because I couldn't drive to the airport during a panic attack, I found a psychiatrist of my own and started seeing her. I went back on Ativan, an anti-anxiety drug I hadn't had to be on daily for years, and started talking out the issues I was dealing with at home with my doctor. She suggested I start a journal, to get the jillions of things floating around in my head down on paper where I could look back on them and see where there were patterns, and objectively see what could be done to address the things that triggered my anxiety attacks.

I guess I'm a true Gen Xer because my handwriting sucks, but I can type 95 words a minute (thank you, Mavis Beacon). I've worked on the Internet (eCommerce mostly) since the Dot Com boom of 1999, so I decided I'd keep my journal online. Blogspot was kinda cool and super easy to use, so I set up my blog and started just cataloging Tim's childhood. Eventually I got to myself. I never thought anyone would really read what I was writing. Blogging was hot, and my blog wasn't all that interesting, to me. I spent a lot of time whining to myself.

Then, I got a comment. An anonymous comment from someone calling herself "debbiem" encouraged me to keep posting. I was freaked out and excited at the same time. But I didn't have any blogging discipline. This was still my journal, so I blogged when I felt like it. That first six months, I blogged pretty intermittently.

At the end of 2009, I read back over a bunch of previous posts and realized my blog was just one big self-pity party. I realized I had readers because they left comments, suprisingly, since all I did was whine. I realized I needed a new attitude, and if other parents in the same situation I was in were coming to read my posts and share their stories, it didn't help to come and read about some loser bitching about her situation.

I blogged here and there throughout 2010, never really getting in to a rhythm, but I started reading other blogs written by other parents of kids with mental illness. I realized how much inspiration and strength I gained from those, and I started 2011 determined to blog more. To be a voice for not only my child, but for my peers - other parents struggling with insurance companies and social workers and school IEP teams and med choices. And, looking back, I did do better. I shared more news, and less whines. I got the opportunity to blog for other sites, which I love and cherish. I found MY voice. And, 114 blog posts in 2011 under my belt, I feel like I've finally come in to a place where I know what I want my blog to be when it grows up.

I want it to be OUR place.

A place where I can share news and information about childhood onset mental illness, and you can share feedback, additional information, and your point of view. I want YOU to write a post here, about your child, your situation, your hopes, your fears, what makes you angry. So - here's my resolution for 2012 for The Mindstorm, and what I'm asking you to do. I commit to doubling the amount of post here in 2012 to 228. And you? Leave a comment. Send me an email about something you want to blog about. Join our Facebook Page and post a link to your blog.

It's a new beginning - it's like having a clean, new journal to write in. I can't wait to have you help me write it.

Blogging About Not Blogging Today

2012-01-02T18:29:00.002-06:00

Ugh. Head cold. You don't want to hear what I have to say about that. Trust me.

No Resolutions

2012-01-01T13:36:00.000-06:00

It's January First, and while my day is consumed by football (Go Packers!), Bloody Marys, and hanging out with friends and family, I did commit to January NaBloPoMo with BlogHer.

Today's post is about resolutions. I don't make them. To me, they're sort of like giving things up for Lent. It's unrealistic to let a day of the year dictate what I will or won't do. But here are a few things that I want to focus on for 2012.

I want to spend less time on the couch, and more on the sidewalk.

I want to be more conscious of what I eat and why, and not eat out of boredom or stress.

I want to spend more time actively involved in activities that will make a real difference in ending the stigma of mental illness. More time talking, educating, and debating, and not just blogging and tweeting.

I want to hear your stories. In fact, I'd love for you to write a guest post here. Email me if you're interested.

I hope you and your families have a peaceful and prosperous 2012. Thank you for being part of my family's lives. We treasure you and your support more than you know.

Schadenfreude

2011-12-29T18:00:00.000-06:00

A mom in a support group I belong to posted recently asking for help to try and figure out why her son might be experiencing depression and listlessness after a long period of stability. She was perplexed because, after spending time in a residential program over a year ago, he'd done well in school, graduated, spent time overseas teaching children to read and write in a Third World country, and is currently working on college applications. Several group members offered ideas and asked questions; but I couldn't, because I was angry. I was jealous.

I wish those were the problems that Tim had, but there was no way I could say anything because, in the back of my throat waited a, "ha!" - the sort of sound Ally Sheedy's character made in The Breakfast Club when the kids were all talking about the problems they had at home.

And like that character, while I can sympathize with my peers, sometimes, I wish I had their problems. I wish Tim could graduate high school. Hell - I wish he could make change for bills bigger than a dollar. I wish he didn't struggle so hard to read books with chapters. I wish he could go to the grocery store on his own, let alone another country.

On the flip side, Tim knows what he wants to do when he grows up - he wants to work with shelter dogs, the ones people give away as hopeless, too much trouble, or lost causes. He knows what makes him happy, and what makes him anxious or depressed. And he knows who he can talk to when he's feeling that way. And that is a gift.

An Interview With Tim

2011-12-26T19:30:00.002-06:00

Why don't you introduce yourself?
Hi, my name's Tim. I'm 17 years old. I have voice issues in my head. Schizoaffective. I can't pronounce that word.

What do you mean, "voice issues?"
Like, voices in my head.

What do they say to you?
To beat people up. Run away.

Do they ever say anything nice?
No.

Can you hear them now?
No.

Why not?
They're gone right now.

Why do you think that is?
My meds are working.

What meds do you take?
I dunno. Clozapine.

What's not so good about your meds?
They make me tired. Blood draws suck. I have one once a month.

How many voices do you hear?
Two.

How are they different?
They say different things. I don't want to say what.

How do you like your school?
Good. We have basketball courts. I like sports.

Do you have a job?
Yes. I put stuff together. I put stuff in boxes and deliver them to different, like, places.

Do you go to school?
Yep. I study math, money, reading, some science. We're studying about Cindy Bentley.

Who's that?
She did a lot of sports a long time ago. She has the same problems I do. But she still played sports professionally. (mom's note: Tim classifies as developmentally disabled due to the IQ he's lost due to psychosis)

What do you want to be when you grow up?
I wanna help pets out. I want to take care of them. If people don't take care of them, I will help them.

Like a shelter?
Yeah.

What else?
I want to have dogs. I wanna have many pets. Four.

We have four now. :-)
Yeah.

You want four of your own?
Yeah.

What kind?
I don't know. It doesn't matter.

Do you feel different than other kids?
Yeah. I have a friend who has a car. I don't drive. He can drive. Another flies planes. He's really lucky.

What else do you want people to know about you?
I'm good at sports. My voices make me different, but not dangerous. I'll have to take meds forever. I don't like taking meds, but they help me.

Anything else you want to say?
No. Merry Christmas, everybody. If you have any questions, send them to my mom and I will try and answer them.

Hero

2011-12-14T23:37:00.002-06:00

I'm floored, honored and proud!

Tim was selected by ABC News as one of their Eleven Heroes of 2011 for his fundraising work for NAMI.

I am proud of how far he's come and his committment to help other teens with mental illnesses. And a big thanks to ABC News for helping raise awareness and fight stigma!

Here's a link to all the heroes on ABC News: http://abcnews.go.com/US/slideshow/11-heroes-2011-15151772

Pitiful?

2011-12-13T09:14:00.000-06:00

I’ve heard and read a lot of accounts lately from parents and caregivers about other adults either giving unsolicited parenting advice or making crass comments about special needs kids when they are having a difficult time in public. I’ve got to be honest – this is one of the biggest reasons I built a 'moat' around my family when we first started this journey, and it makes me downright angry when I hear a story from another parent having to put up with this on top of trying to stop an active meltdown in the frozen food aisle.
I want to share some of the stories with you. I swear I am not exaggerating:

A father of a non-verbal, autistic three-year-old, at the grocery store, was told by a stranger to, “shut your brat up and give him the damn crackers already,” when the father was working to get his son to use the sign he knows for crackers, and the child let a near silent tear of frustration roll down his cheek.
A mother of a toddler with Down syndrome was told loudly to, “keep her brat quiet,” when he was excited at seeing a toy he liked in a grocery store.
A mother of an elementary school-aged child was admonished by passersby in a department store for “letting her brat get away with murder,” when her child had a meltdown – after she’d managed to get the child into a dressing room to isolate him to let him calm down.

Read the rest at The Balanced Mind Foundation.

Growing In To It

2011-12-12T08:59:00.000-06:00

Two years, three months, and 11 days ago, we sent our son away.

We didn’t want to, and we did. It had been 11 years since Tim’s first diagnosis. Over those years there were 12 hospitalizations, 27 different med combinations, seven therapeutic day schools, one suicide attempt, six broken doors, nine different doctors, and a partridge in a pear tree. We couldn’t get Tim stable at home, and the mental health of everyone else in the house was deteriorating. We couldn’t take anymore, but I didn’t know how I’d live without him. The glimpses of Stable Tim were priceless treasures of goofy humor, deep affection, and boundless compassion. But those glimpses had become so few and far between that I feared that if we didn’t take this drastic step, I might never see them again. He had just turned 15 years old.

Read the rest at Support for Special Needs.

Moving In To The Village

2011-12-02T08:00:00.000-06:00

In August 1996, then First Lady Hillary Clinton addressed the Democratic National Convention in Chicago. It was the now famous, “It Takes a Village” speech. In it, she details how, while parents are a child’s first and primary teachers and role models, it takes everyone in the community to raise a healthy, happy child. I was a young mother at the time, with a five-year-old about to start kindergarten, and Tim, just turned two (in hindsight, starting to show symptoms, but still a pudgy, curly-headed bundle of whimsy and energy). I saw the speech on television and, after digesting it, I disregarded it. A village? Pfft. We didn’t need a village.

Tom and I were two college educated, capable adults, perfectly equipped to raise our family on our own with occasional input from our parents. I wasn’t the single mother, working two shifts, that Mrs. Clinton referenced. Tom wasn’t a young man raised without a father. We lived in a good neighborhood with good schools. I was convinced Mrs. Clinton was wrong; about us, anyway. We didn’t need a village. Fifteen years later, I have a completely different perspective.

Read the rest at The Balanced Mind Foundation.

Thanksgiving and a Teen Gift Guide

2011-11-28T15:58:00.000-06:00

By Besimo - click for original on Flickr

All I want for Christmas is the same kind of uneventful day we had for Thanksgiving.

It's been a few years since we've had an uneventful Thanksgiving, and I gotta admit, it was nice. We stayed in our PJ's all day, cooked our turkey, sweet potatoes, mashed potatoes, dressing, gravy, and pumpkin cheesecake from scratch, as a team effort. We watched our beloved Green Bay Packers win their eleventh straight game this season.

One of these years, I'll have a bulldog. So cute!

Everyone helped cook, nobody had a meltdown. It was such a sane and peaceful day I almost feel guilty telling you about it. Seriously. I can't remember a holiday this normal. Of course, what goes along with that is that we were shut up in the house, just the four of us (since Wonderboy is still living overseas for his internship), no visitors and no plans. For the first time in a long time we decided that we weren't going to have people over (as we have the last two Thanksgivings in a row), we weren't going anywhere, and there was no agenda. A completely low-key, unstructured day, save the noon football game on TV.

On Friday I took the kids out to do a little Black Friday shopping. Before you panic and wonder why in the world I would do that, you have to know we were in Door County, Wisconsin, where the population of the entire island is probably less than you'd see at a single Wal-Mart. We bought a few new ornaments for our tree, had lunch out, perused a few small businesses, and it was, by and large, uneventful. Saturday we drove down to the biggest city on the island and watched The Muppets. I thought it was cute and Tim was mostly there for the popcorn, so it was a win all around. On Sunday we made the long drive back from Door County to Tim's RTC and, while the drive was fine, Tim was in catatonia mode, which always creeps me out. I don't know why, but that is seriously my least favorite of his symptoms. I know I've said this before, but I'm pretty sure I'd tolerate the incessant mumbling, under-his-breath discussion with the voices in his head WAY more than the staring-in-to-space-locked-in-my-head-with-them stare into nothingness. Gah.

I swear, it TOTALLY looks just like this

Now, many blogs and websites are putting together a list of gifts that are good choices for kids with special needs or mental illness. I thought I'd share a couple ideas for the teenager in your life with Bipolar Disorder or Schizophrenia, based on Tim's wants and needs. If you have other great gift ideas, please share them in the comments!

Idea #1: Headphones

Yep - headphones let Tim have his own space no matter where he is. He even wears them sometimes just to tamp down the noise in a room, even if they aren't plugged in to anything, because they are a "socially acceptable" ear plugs. Smart, huh? Skull Candy has a great assortment of ear buds and over-the-ear earphones at good prices. To top it off, they're cool looking, which is a plus for teens.
Idea #2: Hoodies

They are a blessing and a curse. I don't know a teen with a mental health condition that doesn't live in one, sometimes to their mother's chagrin. A hoodie provides that extra protection to hide from the world when anxious or overwhelmed, and for that they are a great gift idea. The trick is to get to see their faces once in a while. This one in particular is a favorite of Tim's, because it adds the extra tactile sensation of faux fur lining, and the softness of it is another comforting factor. This one is from Amazon.

Idea #3: Water Bottles with Straws

Meds can dehydrate or give dry mouth. Some meds can cause a hand tremor. A water bottle with a built in straw lets you hydrate while not worrying about pouring water all over yourself when you tip it back. This one from NATHAN also has a clip so you can clip it to your backpack or book bag at school.

Ekphrasis - Free Writing Based on an Image NBPHM / NaBloPoMo Day 22

2011-11-22T13:35:00.001-06:00

Photo by ashleydoar

I've seen this installation at the Art Institute of Chicago. It's meant to represent the artist's partner who died of AIDS; 175 pounds of candy, representing the partner's body weight when he was healthy. Visitors are encouraged to take a piece of candy, representing how the disease ate away at him, and when it gets down to a certain level, it is to be replenished, giving him a sort of eternal life.

In some ways, I feel like Tim is this pile of candy, but in reverse. I imagine us at Tim's lowest, 11 years old, locked on the ward of a psychiatric hospital for the first time, crouched in the corner a dark room, trying to outrun the demons in his head, while I sat alone at home, rocking back in forth in my own darkness, trying to wrap my brain around how my son could be so broken. Tim was a single, shiny, cellophane wrapped candy then, seemingly insignificant to the average passer by, but achingly absent to me. He was un-whole and I was left wanting.

We've spent the better part of a decade adding candies to the pile. Sometimes we get to add just one candy at a time. Other times hand fulls are thrown away, leaving us distraught, as if all the candies we'd added until then were for nothing. We've been blessed this past year to constantly add candies, throwing them at the pile so often it's as if they were there all along. Those we've had to remove this year were mercifully one at a time; noticed at the time of discard but not tarnishing the overall magnitude of the pile. And while I am happy that the pile is at a healthy, sizable level, I stand vigilant beside it, waiting for the day when hand fulls are again thrown out at a more rapid pace than we can replace them. Logically I know that this fear keeps me from enjoying the candy we have today, but I cannot let down my guard. I love the broad, bright, shiny pile of candy we have before us now. I plan on hoarding it.

Just A Friday Update, No Big Whoop - NBPHM / NaBloPoMo Day 18

2011-11-18T15:32:00.004-06:00

Even with the holiday coming, it's been a pretty good week for Tim. One rough morning earlier this week when he called Tom and said, "I'm hyper, I'm bouncing, I need you to talk me down," Tom did.

The staffing call - a quarterly round of BS that we have to endure to keep Tim's grant - was uneventful. The RTC gets their new staff psychiatrist next week and I am debating whether to discuss a med change with him/her from Clozaril / Haldol to Saphris. If you have experience with Saphris, I would LOVE to hear about it - please email me or leave me a comment!

I'm a little blue with Tom gone for a week hunting. He really needs and deserves his male bonding time with his friends, though. He takes such good care of us all year he really deserves it. Besides, the entire family loves venison and our freezer is pretty empty from last year's single deer. I miss Tom when he's gone, especially with Wonderboy overseas. Wonderboy Skyped me yesterday to say he has a sore throat, he doesn't feel good, and he misses his mommy and his dog. I nearly lost it right at my desk. He will be 21 next week. Where in the blessed hell does the time go?

I got a letter from our town's public high school today, asking if Tim would be walking in graduation in June. I called the office there and reminded him that he wouldn't be graduating. I was sorta pissy about it. The call went something like:

Them: "Hi - just wanted to know if Tim would be joining us for the graduation celebration."
Me: "He's not graduating, suckers. I got you to put it in writing - you signed the IEP that says he's gonna be a super senior. I'm looking at it right here. So suck it, high school, you're stuck with him another four years."
Them: "Uh...ok...."

I may be paraphrasing.

Deja Vu All Over Again

2011-11-16T11:34:00.000-06:00

...My son Tim, who has a diagnosis of Schizoaffective Disorder, turns 18 in eight months, and he will age out of his current RTC placement. He won’t be graduating high school (read here about the Super Senior program), but we will have to decide whether he should come home or we should find another residential placement for him....

Read the rest at The Balanced Mind Foundation.

It's Not Easy - NHBPM / NaBloPoMo Day 15

2011-11-15T14:31:00.001-06:00

I've posted this song before, so if you've been brave enough to have been reading my blog for the past three plus years, you've seen it posted before. But there is no song that better describes my little boy than this one. He is my Superman.

My First Support For Special Needs Blog Post

2011-11-14T08:33:00.000-06:00

....I know that I couldn’t be the advocate I need to be for my children without the non-judgmental support of these parents. I’ve even gotten to know some of the people I first met online in person. Having these men and women and these groups is the most valuable tool in my fight to keep my personal sanity on this wild ride. Without them I’d spend a lot more time in the fetal position, and I wouldn’t have the strength to pull myself up by my bootstraps the morning after my pity party and be the mom they need me to be....

Read the entire post at Support For Special Needs.

It's Monday Again - NABPM / NaBloPoMo Day 14

2011-11-14T05:00:00.000-06:00

So...another week begins.

We spent time Thursday and Friday last week talking as a family about what's going on with The Girl* and talking to her about what an evaluation is. We'd had a cocktail party scheduled for Saturday night for weeks and, while debating if we should cancel, we all decided not to. She was looking forward to seeing my friend Carla and Carla's dog who were coming to stay the weekend, as well as some of the neighbors. And since her therapist agrees she's not in crisis (meaning, not a risk to herself and not underweight), and she was looking forward to an evening of movies and doggie-love, and, frankly, Tom and I needed a few hours to enjoy our friends and neighbors and not think about mental illness, the party went on as planned. She watched Moulin Rouge and Mama Mia, clumped in a pile of puppies, and we talked about the coming winter and the homeowner's association over a couple of martinis and pot luck appetizers.

Thanks to my loving and ever-supportive husband, a few close friends, and a slew of online friends who really know what this life is like - and who allowed me to vent my anger at the universe for inflicting additional pain on my children - I was able to get my head screwed back on straight by Sunday afternoon and get my daughter to her first evaluation at the behavioral health hospital that, until now, we'd only visited with Tim. And the good news is, while The Girl* does need to see a specialist that deals with body image issues and depression, we will be doing that outpatient, in the doctor's office, for now. I'm still pissed at the universe. I'm not sure if I ever won't be. And that's what I work on in my therapy sessions.

*"The Girl" is a pseudonym I use for my daughter. She picked it because, while Tim knows I blog and wants me to use his real name, she knows and would prefer I didn't. That's also why I never post pictures of her face here.