Relationships and Unwanted Guests

Chrisa Hickey6 comments

Both Sides

I have two relationships with my son. One is the “normal,” mother and son relationship. That’s the one where we discuss what happened at school, whether 10 cups of popcorn is an appropriate after school snack, and what he wants for his birthday. That’s the relationship where he hugs me goodnight and we giggle after singing karaoke in the family room. That’s the relationship where I cheer on his basketball team and congratulate him on his latest fishing achievements. That’s the relationship where I have hope for his future. Then there is the other relationship; the one with his illness. That’s the one where I try and reason my way through his paranoia. That’s the one where I fear for his safety and, sometimes, mine. That’s the one where there is no future because the jury is out on whether we can even make it through today.

I had just gotten into my car at the airport after returning from a two day business trip to Buffalo when Tom called. “Tim’s in an ambulance on his way to the hospital,” he said. I stopped breathing and my brain automatically calculated the amount of time Tim has been out of residential care; just shy of 10 months. When I resumed drawing breath I posed a question I knew intellectually was stupid but emotionally I needed to ask. “Why?” Details were limited, but Tom relayed the ones shared by his teacher at school. Tim wouldn’t get in his car to come home. He expressed he did not feel he could be safe and needed to go to the hospital. An ambulance had come to retrieve him from school and his teacher was following behind in her car. Tom was on his way as well, across the county to meet Tim at the ER.

What followed was the clumsy dance of having him seen in the ER, explaining to a stranger that Tim has schizophrenia, getting his psychiatrist on the phone with the ER doctor, and getting him transferred by ambulance and admitted to the psychiatric hospital where his doctor has privileges. It’s an exhausting spectacle in three acts that could have been much, much worse had it not been for the miracles of a psychiatrist that answered his page in 10 minutes flat and did the pre-admission work to get Tim a bed at the psychiatric hospital, and a psychiatric hospital that actually had a bed available when Tim needed it.

I met Tom and Tim at the psychiatric hospital and when I saw my son, I didn’t see him; I saw the illness. He was riding the psychiatric symptom jackpot of mania, disorganized speech, delusions, paranoia, and aural hallucinations. “I couldn’t go home, Mom. My sister is bugging the crap out of me – I don’t know why she has it out for me. I’m not sure why all the cars are yellow. I’ve just got so much stuff going on. She’s being a total brat. Shut up! What is all this stuff flying around? I couldn’t be safe, Mom. I told my teacher.” He kept spitting out these words at a pace that could only be measured in double-digit miles per hour. I congratulated him on being aware enough to know he needed help. “Yeah,” he said, accented with an extended hand, a gesture akin to what one might expect to see from Jay-Z on stage as he punctuates a rap lyric. I asked Tim if his voices were telling him anything and he didn’t respond; he looked upwards, eyes darting to and fro. I know that look. That is the look of the hallucinations, commanding him not to give up their secrets. My heart sank. At that moment I knew he would not be coming home that night. The illness had him, again.

Tim has spent 7,134 days on this planet. Nearly 1,600 of those days have been in inpatient or residential treatment, including the last three. I am angry that I have had to relinquish more than 20% of his life to doctors and therapists and caseworkers. I hate that 1 day out of every five of his life he has spent away from us because of this disease. This bifurcated relationship isn’t fair. I wish we knew how to splice off the relationship with the illness. Conventional wisdom might suggest we need to learn how to integrate the two relationships into a single shared experience. But I’m not willing to do that. To integrate the two is to accept that the illness is an integral part of our relationship. I know that’s not true. Our relationship is shared silliness and singing to P!nk in the car. Our relationship is making pasta from scratch and swimming in Kangaroo Lake. Our relationship is goodnight hugs and eggs over easy on Saturday mornings. I refuse to surrender our relationship to the beast of schizophrenia. It will always be an unwelcome house guest we put up with when necessary, and then turn out into the street once again when we find our center.

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Gus Deeds, 60 Minutes, and the Why of It All

Chrisa Hickey2 comments

Did you see Senator Creigh Deeds on 60 Minutes last night? If you didn’t, stop reading and watch it, below, before you read on.

Such a tragic story, and such a damning and pointed message at society: Gus was a great kid. He was a perfect son. It’s clear the system failed. It’s clear that it failed Gus. It killed Gus.

It fails so many of our children: lack of doctors, lack of beds, lack of treatment, lack of visibility, lack of compassion, lack of understanding – they are all killers.

Why, in Chicago, Illinois, does it take six to eight weeks to get a first appointment with a psychiatrist? Yes – that’s the average wait. That’s how long we had to wait to get an appointment with an adult psychiatrist when Tim transitioned from residential to home care.

Why, at the University of New Mexico hospital, are there, right now, children waiting days in the ER for a bed on the psychiatric ward? Yes – that is happening, today.

Why is the Federal Center for Medicare Services trying to restrict access to anti-psychotic medication for persons on Medicare Part D? Yes – it is under review, now. Write to your Senator to urge him or her to contact CMS.

Why is Congressman Tim Murphy’s Helping Families in Mental Health Crisis Act still sitting, waiting for a committee hearing? Yes – it is an important bill to help increase the number of beds available,  bring services to rural areas, and help clarify HIPAA law so that parents of children over age 18 can still be involved in our childrens’ care.

Why is the standard for discharge from a mental health hospital that the patient is no longer in  imminent danger, instead of stability? Yes – this is the national standard, and it usually leads to a person being discharged long before they are stable.

If you have another few minutes, watch the follow up piece 60 minutes did about the stigma of raising a  child with a mental illness. They laugh about casseroles. Because all that’s left is for us to laugh.

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Chrisa Hickey5 comments

Kelly has been described by the defense team with several labels. Homeless. Schizophrenic. Vagrant. Nuisance. Not once did they call him a man. Never did they refer to him as a human being. 

The verdict came back so quickly. I thought of the OJ Simpson trial but pushed the thought out of my head. A swift deliberation didn’t mean it would be acquittal, I told myself. I was sitting on the train on my way home when I heard the verdicts read live on the radio. Not guilty. Not guilty. Not guilty. Not guilty. It felt like four punches to the gut. As I was sitting among commuters over a thousand miles away from the courtroom, I held my tears in. I held my breath in. And when I finally got to my car an hour later, I wept alone in the darkness, the echo of Kelly screaming for his father playing over and over in my head. 

Pay particular attention to the first 15 minutes, where Kelly completely complies with Officer Ramos. Kelly doesn’t stand up until after he is struck, in an effort to defend himself.

I have gotten to know Kelly’s sister Tina over the past two years, and the thought of her anguish and the chilling sorrow her parents Ron and Cathy must have been feeling in the courtroom at that moment cut me through my soul. This verdict does not and will not ever make sense to me. 

I am blessed that our encounters with police during several of Tim’s episodes were positive, and that I live near a large city that invests in CIT training for its police officers. What happened to Kelly and the Thomas family is a major reason why Tom and I participate in consumer panels during Chicago Police CIT Training classes. I think the best way we can honor the memory of Kelly Thomas is to continue to press for funding for CIT training for all police departments. Write to your county board of supervisors or your alderman and demand CIT training be funded for your local police. Attend a town council meeting and ask why 100% of your police force isn’t CIT trained.  If not for Kelly’s memory, do it for our children, so that we may never have to watch a video of our child being beaten to death while calling out to us and to God for help.

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The Final Word on the Subject

Chrisa Hickey5 comments
The Girl has always wanted a sister. With two older brothers and paralyzing shyness, she had never been able to make many close friends that understood what it is like to grow up girl. So when the bonus kid came into our lives and our home, she was happy to have a sister figure in her life. That all changed last week when I finally realized and The Girl finally understood that she wasn’t being treated as a sister. She was a shill for the emotional manipulation of an intensely self-centered teenage girl with more brains than empathy and a highly overdeveloped sense of denial. Tim, ever the protective big brother, finally realized what was happening was wrong and we needed to know. Don’t let the below average IQ and the psychosis fool you – he has better insight into people than almost anyone else I know, and there isn’t a manipulative bone in his body.

I once told the bonus kid (last time I will refer to her as such, by the way) that she had glommed on to The Girl because she was the quietest and least threatening person in the house. I meant at the time that she had picked The Girl to hang out with because she didn’t have to be emotional around her. I didn’t realize at the time it was a strategic alliance. Not realizing it sooner is the only remaining vestige of guilt I feel in this failed relationship. Once you mess with my kid, it’s over. I don’t care if your 17 or 70.  I know I need to figure out how to separate the behavior from the kid. I know that I am failing at this. I don’t feel good about it.

Tom and I have learned a few lessons in all this. We’ve learned the hard way the definitions of factitious disorders, Borderline Personality Disorder, and precociousness. We’ve learned that all children need to be treated like children, even if they have the ability to talk like adults. We’ve learned that a childlike exterior sometimes hides a damaged, self-centered core hellbent to take the entire ship down with it. We’ve also learned that we’re done collecting strays. Our parents raised us to give more than we take, and we can continue to do that without having to be so personally involved. There’s too much to risk. Finally, and most importantly, we have come to realize that we have the three most amazing kids on the planet, and they deserve all of our time and attention.

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Chrisa Hickey3 comments

pre·co·cious priˈkōSHəs/ adjective 1. (of a child) having developed certain abilities or proclivities at an earlier age than usual.

fac·ti·tious fakˈtiSHəs/ adjective 1. artificially created or developed. “a largely factitious national identity” synonyms: bogus, fake, specious, false, counterfeit, fraudulent

trust trəst/ noun 1. firm belief in the reliability, truth, ability, or strength of someone or something.

Borderline Personality Disorder

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Chrisa Hickey5 comments
Fail Road
I’m failing in spectacular fashion.
Our bonus kid has been struggling with learning how to be part of a family without falling into her old pattern of alienating everyone around her before they can disappoint or hurt her.  She vacillates between needing intense, toddler-like levels of affection to openly despising every word anyone over the age of 19 utters in her presence.  When her actions result in unpleasant consequences she resorts to self-harm and self-loathing.  She has spent time inpatient and spends at least an hour a week in therapy. Her intentions in regards to interpersonal relationships are good; it’s her follow through that is still very much lacking.  The grown-ups in the house aren’t handling it well.  As any parent of a child with a severe mental illness can tell you, there comes a time when you just can no longer handle being treated with contempt every moment of every day.  We know it’s our children’s illnesses, but that doesn’t make it any easier.   Most days we can hold it together and not raise our voices or lash out.  But most days are not most days in our house right now.  

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Suck It Up, Buttercup

Chrisa Hickey6 comments

Have you met my friend Adrienne? Not only is she smart, talented, beautiful, and a great mom, she’s also an amazing writer who was honored at this year’s BlogHer as a Voice of the Year.

She’s also, very often, the voice in my head that keeps me from saying stupid shit out loud to people that really, really deserve it.  She is the Empress of talking about controversial things without making people feel she’s defensive or overbearing about it.  It’s a skill I’ll never perfect, and one I very often envy.

About two weeks ago, Adrienne wrote a great blog post about how sometimes, even the things well-meaning people say to special needs parents hurt us.  If you haven’t read it, go read it now.  I’ll wait!

Ok – thanks for reading it.  Did you by chance read any of the comments? If you didn’t, at least scroll down far enough to read a comment from Jenny, who calls special needs parents “self-centered” and says we have an “accommodate me” culture.  There were others.  Adrienne’s latest post chronicled some of them. I had to comment.  And I failed in channeling Adrienne’s calm demeanor as I did so.

Dear haters:
Yes. I’d rather you ignored me than told me my so is too old to be doing whatever it is he’s doing that you think he’s too old to do. Thanks to his mental illness and/or his medication, his IQ has deteriorated 35 points since he was in Kindergarten. Just because he’s 6 feet tall doesn’t mean he’s a grown up, emotionally or intellectually. Forgive me for not running out and having that printed on his t-shirt. 

True, lots of well meaning people say hurtful things without knowing they are hurtful. I find it ironic you want us to spare your feelings by not telling you they are hurtful, but you don’t give a rats ass about our feelings. I don’t have to ask how everyone else’s kids are doing. I get it every day. Whether it’s on Facebook, or the annual Christmas brag letter, chatting on the corner waiting for the school bus, or calls and emails reaching out to say hi, I hear my friends and family brag about their kids. And when I’m asked how my family is, 99% of the time I will say “fine,” and move along, because I don’t need to explain it for the 1,000th time / get sympathy / get unsolicited advice. 

No one is asking you to change how you speak to us. In fact, I actually prefer it when you tell me to suck it up, or God only gives us as much as we can handle, or if I only changed his diet to gluten/sugar/meat free he’d be cured, or how can I stomach putting all that medication into him. I prefer it because it’s easier to avoid people who have no qualms about being douchey than try and educate them all. So keep being douchey. I appreciate the very visual warning of who and where you are. 

THAT’S what bitter sounds like.

Adrienne, I’ll try and do better next time.  I promise.

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Self-Care and Guilt – Guest Post

Chrisa Hickey

Last Saturday I spent the afternoon making greeting cards. I’m not particularly crafty, but this is a hobby my mom got me into years ago and I enjoy the creativity of making up my own designs combined with the practicality of creating something I need anyway. I have a little spot in the basement where I have all my paper and ink and stamps and glue and I spent four glorious hours all by myself figuring out the design for this year’s family holiday card. And I felt guilty nearly the entire time.

Read the rest at

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What I Learned at Lollapalooza

Chrisa Hickey4 comments

Yesterday, I took Tim to his first concert.

I chose Day Three of Lollapalooza for a few reasons:

  1. It’s outdoors
  2. It has lots of different things to do other than watch bands, and lots of space to do them in
  3. The headliner was a band we both wanted to see
I was fearful, I admit it, and super-mega-hyper vigilant in my planning of the event.  Tim has an aversion to loud noises and big crowds, and I was purposefully taking him into a situation that had both.  It didn’t sound super logical.  But we did a lot of prep.  We made a plan to see only six acts in the 11 hours of the festival.  That gave us a lot of downtime to sit in the shade and explore other things.  We brought earplugs in case the noise was too much.  We talked a lot in the weeks before hand about the noise level and how many people would be there, so Tim wasn’t going in cold.  We created three rules that Tim memorized before we got there:
  1. Tim must stay with Mom at all times
  2. We aren’t in a hurry, so no need to get frantic. We take our time from place to place
  3. If Tim says he needs to leave, we leave, no questions asked
We took the train down to the city rather than have to deal with driving in.  On the way, I got a surprise text from Officer Julie, the most amazing CIT officer in the City of Chicago as well as the greatest friend a gal can have.  She picked Tim and me up at the train station and gave us an escort right to the front gates of Lollapalooza.

Tim felt like royalty.

We explored the grounds and had something to eat before we camped out at our first venue for the day.  Guards was the band, and after an initial shock at exactly HOW loud it would be, Tim bounced and bopped and danced along with the crowd when he felt like it, and sat down when he felt like it.

We watched two bands, then took another stroll, had some ice cream, and strolled back to the main stage (the one behind us in the picture above), and camped out on the lawn-covered hill on the right to see Tegan & Sara.   Officer Julie checked in by text a few times to be sure we didn’t need an escort back to the train, but Tim had been doing fine. Then, from our venue, Tim could see the masses stream in.  Yeah, it looked like this:

Lollapalooza 2013
He turned to me and said, “That’s….a lot of people.  I gotta go.”  So we did.  We walked other parts of the park.  We had some dinner.  And he wanted to go up to the alternate main stage to wait for Vampire Weekend to play.  I was a bit panicked because he wanted to go fairly close to the stage, and I knew the crowds would rush when the band started.  And they did.  From where we were, it looked like this:
2013 Crowd
And I was concerned he would freak out and we wouldn’t be able to get out.  Hell – I was freaking out. Drunk 20-somethings kept stepping on my feet.  I asked one drunk idiot to please not stomp on my feet again and I got a 3 minute swear-a-thon from him.  But Tim was in heaven.  He jumped up and down, clapped, sang along, and danced.  It was if the crowd didn’t exist.  After Vampire Weekend, we walked the entire length of the park to the headliner stage to see one of my all-time favorite bands, The Cure.  We found a spot not nearly as crowded, and again, he danced and sang the entire two hours.  At the end of the night, he and I walked hand-in-hand back to the train station so as not to get separated.  We stood in a massive jam at the train station waiting for the train, and again, he was fine.  He even shared gum with a young lady who asked if he had any to share.

As I lie in bed last night, exhausted, I realized I’d learned something about our new normal with Tim, since he’s been home from residential, and since he’s been stable.  First, Tim is no longer a child.  He really is a young man who acts like a  young man and can have some responsibilities like any young man should be able to have.  Second, Tim is able to process and manage experiences when he knows what to expect, and he wants to try them badly enough.  Third, Tim is super cool to hang out with.  I highly suggest taking Tim to a festival.  He’s kind, courteous, affectionate, and concerned for your well-being.  Plus, he’s kinda cute.

I will always be vigilant when it comes to Tim’s stability.  I guess I can do away with the hyper vigilant, however.  I need to let him grow up.  I’ll try.

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Dear NBC Nightly News and Brian Williams

Chrisa Hickey7 comments

Dear Producers and Brian Williams:

 I am shocked and saddened that last night, Brian Williams said Ariel Castro is “the face of mental illness.” 

No, he most certainly isn’t.

Not only did a psychiatrist testify that he IS NOT mentally ill, but the horrific things he did are NOT a byproduct of any mental illness.

This is the face of mental illness.

This is my 19 year old son, Tim. Tim has Schizoaffective Disorder, which means he struggles with both Bipolar Disorder and Schizophrenia. Tim is like 94% of persons with severe mental illness. He follows his care regimen of medication and therapy. He’s trying to learn a job skill in an extended high school program. He participates in trainings of Chicago police officers and Child Protective Service workers to show what childhood onset mental illness looks like. 

And it very definitely DOES NOT look like Ariel Castro.


Chrisa Hickey

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