Wednesday, February 19, 2014

Sadness and Wonder

It’s been quite a few interesting days since my last post.


Tim was discharged from the hospital after a 6 day stay with an increase in his Latuda. He was a bit withdrawn but seemed to be ok until a week later, when he had a violent outburst centered on my and Tom’s trying to get him to take his medication. He said the increase had made his stomach hurt and refused. When we tried to discuss it with him (and tried to get him to chew less gum and try some Pepcid AC) he became violently threatening. That subsided fairly quickly, but the following day he went back inpatient after “loping” (Tim speak for “eloping”) from his school. It took the Skokie PD to get him to the ER, where we were told there was just one bed available in all of Chicagoland, and not at our usual psychiatric hospital.

Out of options, Tim was admitted there this past Friday. Sadness hit me especially hard with this because, first, it means the system again failed my kid, in that he was discharged not when stable, but when he wasn’t actively violent or suicidal. Second, I feared our monumental efforts over the past six months to get him off the Clozaril would be reversed as Latuda was proven to be ineffective. Luckily, we got a good doctor at Highland Park on a young adult ward who finally listened to us and, more importantly, to Tim about his anxiety and how it manifests in his stomach. She didn't change the Latuda, but did add an anti-anxiety med which seems to be helping. Tim was discharged Monday, back in the ER on Tuesday. We decided to keep him home a few days to see if the anxiety meds will help. Too much stimulus is just intolerable for him right now. I fear we may never get through an entire year without Tim being inpatient.


The past week I’ve been helping out a Parent Like Us reading comments and messages sent to her son via a Facebook page she set up for his birthday. Colin will be eleven in March and here’s his story:


As you may know, the story went viral, and more than 2 million people have “liked” Colin’s birthday page. There have been hundreds of thousands of comments and hundreds of thousands of messages sent to the page as well. Being that Colin is a kid, his mom reached out to friends to help screen them all before the big day to ensure the messages were appropriate for Colin. It’s been a big job – there are about 10 of us working every day, several hours a day, weeding through the messages that at one point were coming 15 a minute.

When I started helping I did so to aid another mom of a special kid who needed help. What I’ve discovered, a week in, is an incredible level of wonder at the collective goodness and kindness of the world and all of the people in it. I’ve read and responded to messages from kids, teens, and adults from every continent save Antarctica. There are messages of love from Palestine and Israel; from Iraq and Iran. They come in Portuguese, Arabic, Farsi, French, Flemish, German, Spanish, Hungarian, and Russian. They come from children and grandparents; men and women. They come from adults who were bullied or had issues to overcome as children; they come from other moms and dads who feel the love being showered on Colin as a love for all special children in the world, including theirs. They express their love in single sentences and long letters; in hand-drawn art and in emoticons.

It is far and away one of the most positive and uplifting experiences of my life. Just read a few hundred comments and see if you don’t get lifted out of the winter doldrums. It’s impossible not to smile reading them. The world truly is full of love. It just took this little child – Colin – and his mom to lead us to a place where we all share it.

Monday, February 3, 2014

Relationships and Unwanted Guests

Photo by James Jordan

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 that he 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 worse had it not been for a psychiatrist that answered a 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 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 as necessary, and then turn out into the street once again when we find our center.

Monday, January 27, 2014

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

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.