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Today is my son Ben’s 30th birthday. Whoa. How did this happen? I know every parent feels this same sense of disbelief as their children celebrate milestones; still, when your child has dealt with serious illness, that sense of wonder is enhanced by the fear you have felt in the past.
I remember asking myself: will Ben even live to be 30?
I know there are many parents who share these fears for many different reasons – even with perfectly healthy children, fear of losing your child is part of the beautiful package of love. No, Ben has not been diagnosed with cancer or heart disease. He has not been deployed to a war zone.
Ben has schizophrenia, a physical illness of the brain. Yes, it has changed our family forever. But is it life-threatening?
You bet it is.
Parenting and Mental Illness
Nine years ago, I was appointed conservator of estate and person for my son Ben. I remember the court hearing well. Ben was in the middle of his first hospitalization for schizophrenia, refusing medication, and wanted to be released. The only way to keep him in the hospital, if he did not agree to stay voluntarily (and that certainly wasn't happening), was to apply for conservatorship. The hospital would then be legally required to keep Ben there - at least until the court date.
Ever since my son's diagnosis of schizophrenia, we have had to work around his strong desire to live without his mental health medications. In the past, he has refused them, cheeked them, thrown them up after swallowing them. They've been hidden in his pockets, his closet, in the bottom of the garbage. Things are better now, but mostly because we are on to his tricks. I'd like to think he is cooperating because of some insight--but the most probable reason is that he simply can't get away with not taking his psych meds anymore.
First of all: a very Happy New Year to you! May your 2012 be filled with possibility, community, love and peace.
2011 was an amazing year for our family. Inside our walls, it brought changes that were both discouraging (Ben's reduction in services, leading to a relapse that could have been avoided - down the chute in Chutes and Ladders) wonderful (eventual return to medication, and restoration of baseline; back to good grades at school and a job!!), and challenging (family role upped to that of unofficial supervisors of Ben's official caseworkers - don't get me started). As I often remind myself, it is what it is. This is what we must do right now to keep Ben healthy and productive.
It is not, nor can it be, a forever choice to drive him to work or school every day, to personally make sure he takes his meds after eight years of having that taken care of in the group home where he is no longer allowed to live ("too functional" --- yeah) But for now, it is what we must do, and the results are more than worth it.
I come home from the drugstore with a bagful of meds - for me this time. With threatening bronchitis and a theatre show to do in two days, I must take care of this cough and cold, and nature is just not cutting it alone this time.
Ben watches me unpack my goodies - four prescriptions in all - and line them up on the counter. This is a familiar sight, one we create every morning and evening when Ben stays with us. The rule? We supervise him as he takes them, and for 15 minutes afterward. No judgment, no explanations, no trying to "convince" him that he needs the meds.(More info on psychiatric medications here) It is, simply, the rule. So far, so good. One lesson I've learned while parenting Ben from toddlerhood on, is that explanations often lead to loopholes he tries to widen and leap through.
We are getting along so well these days. Much of it has to do with Ben's self-esteem having returned to his "baseline functionality" after this summer's relapse. So, I feel comfortable enough to start the following exchange:
If there's anything I know about parenting, it is this: Parenting is the single most humbling experience you can have. You make plans for this child you have helped to "create", and life simply has other things in mind for him or her.
Oh, yes, you are a big part of the child's journey - but in full control? To paraphrase comedienne/author Julia Sweeney's excellent book: God Says, Ha!!
The best-laid plans are only that: plans. Want your kid to be President? (yikes, who would want that?!?!) He or she had better want that too - and have the gifts to go along with the desire.
A few years after Ben was diagnosed with schizophrenia, a friend sent me to a "psychic astrologist" I'll call Zena.Don't laugh. I was freshly unemployed after years of radio broadcasting, still getting used to the changes that my son's schizophrenia had brought to our family, and in the process of looking for an agent and publisher for my book about it, Ben Behind His Voices.
And, also, why not? I had gotten advice from worse places, believe me.
First of all, big congrats to my fellow Healthy Place bloggers Natasha
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Tracy (Breaking Bipolar Blog) and Kendra Sebelius (Debunking Addiction blog) - we all received Web Health Awards for Summer/Fall 2011, and I'm proud to be here on HealthyPlace with them!
Meanwhile, in nearby NYC, the buzz is about this weekend's Marathon. On the way home from dropping Ben off at school this morning, I heard a news story about one runner whose motivation is this: his brother was murdered in a Queens home invasion in September and his mother is battling cervical cancer. Runner Sal Polizzi told WCBS reporter Marla Diamond, “You really can never pick up the pieces, but you do it as best as you can.”
This is true, too, for families dealing with mental illness.
Today is my birthday, always a day of reflection and gratitude for me. This year, October 11th comes very soon after Mental Illness Awareness Week, The Jewish High Holy Days, and the publication of my book, Ben Behind His Voices. So much to think about, to share with you.
First of all, there is Ben, my son, who gave me my first birthday gift this morning (a mixture of teas he carefully selected himself, taking the time to consider my preferences). This year it is also a gift of self-esteem for him, for it marks the first time in almost a decade that he was able to pay for it himself.
Last night, Ben came home from an "Anonymous" meeting and shared with me that there had been an unexpected discussion about mental illness, and that (in his words) "about 90% of the people in the room admitted that they have one." I wanted to press for more details - you bet I did - but I've learned not to push the learning. The fact that he chose to tell me this much - without, of course, revealing names or details - seems like a good thing. Did he participate? Did he admit he has an illness, too? Did he feel supported in this group of peers? I didn't dare ask. But I did wonder.
Today is the start of the "Jewish New Year", Rosh HaShana. No matter what your community, there always seems to be a period of time set aside to reflect on what has happened in the past year, how you are going to process it, and how you hope/plan to act on what you learned in the future.
Next week the journey continues, during Mental Illness Awareness Week. Maybe those of us living with mental illness in our families can inspire awareness and thought in others, as we consider our own situations. Reflection can lead to realization, and to change. This is not merely a matter of what has happened to you and to those you love; it is more a reflection on how you eventually choose to deal with it.