Category Archives: Bipolar

When It’s Not Okay

I call my son’s name about five times to try to get his attention. He is clambering on top of a 5,900-foot high volcanic plug in southern Oregon called Pilot Rock. Everyone in our group has reached the summit and is walking around on the larger, more easily accessible area, but Nigel has opted to climb over to the more difficult portion, separated from everyone else, and has happily been there for quite some time. I continue to try to get his attention to let him know we are ready to start our descent, but he does not respond, even though I know he is well within hearing range. He is in his own world, verbally stimming. He is 18 now, and autism is alive and well.

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I haven’t posted for a while, and there are several reasons for that. I could delineate each of them, but there’s one that stands out.  It’s huge and it’s overwhelming. And it’s not talked about enough in the autism community.  It’s usually hidden, brushed under the rug, and denied, when really it’s the bear in the room no one wants to poke. Some of us with older children – young adults, even – are reluctant to talk about it outside of our immediate families because we don’t want it to affect our children’s (possibly soon) future plans and dreams (yes, I’m referring to myself). But maybe that’s part of the denial. If I don’t talk about it, maybe it will go away.

In the past year my sweet, gentle son has become aggressive. And I will not go into detail except to say that it has sadly gotten to the point where I have had to look at supported living options for him, in the event that he can no longer live with me. I hate writing this. But I feel that I must because I know there are other parents experiencing this, not knowing what to do. Feeling blindsided. Feeling alone. Asking why me?

The first thing to do, if you have not done so already, is to contact your local Developmental Disability services office. This is usually handled by the county, but it may be different in other areas. There may be an evaluation process to determine eligibility, so get started as soon as possible. Once your child is found eligible, you will be assigned a case manager who will work with you to discuss housing options and tell you what services are available, including a behavioral consultation that may help determine the underlying causes of the aggression and what to do in the short term to manage it. I also contacted our local police department to tell them about my son and to determine ahead of time what the procedure would be if he were having an aggressive episode and I needed to call 911.

The second, and equally important, thing is to try to figure out what might be causing the aggression. In Nigel’s case, it started about a year ago when we increased his anticonvulsant medication (because he was still having seizures). Each time we needed to increase the dose, he had an aggressive episode, and they continued to get worse. I didn’t make the connection at first, but after six months, I finally did. I did some online research – not just chat boards (although those were very helpful) – but also medical trial reports and studies. It appears that my theory was correct. However, I noticed that he had a couple of aggressive episodes not during a dosage increase, and I also noticed several other symptoms that I recognized as indicative of bipolar (since I have it). So I finally got his neurologist to start him on a new anticonvulsant, but it’s not yet at a therapeutic level for us to decrease the “bad” one. And I finally got Nigel in to see the county’s adolescent psychiatrist just last week. She said that autism and bipolar are often comorbid disorders. And after a thorough evaluation, he received a diagnosis of bipolar and was prescribed a mood stabilizer. Bipolar is often treated with anticonvulsants, but the doctor felt that Nigel’s case is severe enough to warrant additional medication. Furthermore, due to some anxiety and OCD symptoms, Nigel had previously been prescribed an antidepressant, which was no doubt causing manic episodes and aggression.

At the time of this writing, we are still very much in med-change mode, and we have not yet been able to decrease the first anticonvulsant, so there’s no change to report. But I do have one positive note to end on – that we obtained this additional diagnosis while he is still with me, so that I can get him the medication he needs, and above all, that he can feel better. Because to say that he has not been himself is a huge understatement. I know how awful bipolar has been for me, and the thought that his is worse than mine pains me greatly.

I realize that I may be criticized for writing this post, for exposing my son’s problem behavior. But I did not write this post for attention or sympathy, I wrote it for the same reason that I started writing and blogging about autism five years ago: to connect with other parents and help those in the same boat. Our children’s aggression is scary, bewildering, and very hard to talk about. But it’s often part of what we face as parents of children with autism, and we have to talk about it. We owe it to ourselves, and we owe it to our children.

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Eventually, Nigel noticed that I was summoning him, and he got down off the rock. But all the way back down the mountain and to the car, he strode on ahead of the group at least a tenth of a mile. He was argumentative in the car. And that night he had one of his worst aggressive episodes ever. I may never fully determine what causes his aggression; most likely there are multiple causes (sounds familiar, I know). But I will do everything in my power to figure it out and help my son. Autism has been our bedmate for quite some time. It’s still alive and well – but, with a few adjustments along the way, so are we.

Tired But Wired

Stress over $16,000 bill from USDA? Check. Erratic sleep schedule? Check. More-than-moderate alcohol consumption? Check. Hypomanic episode? Done.

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I got back from the concert feeling pretty ramped up. Earth, Wind & Fire were awesome! We had a great time! I felt so full of life and energy, and at 11:30PM I texted my boyfriend, “I’m not even that tired!” A half an hour later I tried to go to bed, reminding myself that I had work in the morning, and as I lay in my bed, head on the pillow with my eyes closed, it hit me. I felt a familiar but unwelcome whirring in my brain, and I knew: I was hypomanic. Uh-oh.

For those not as well-versed in bipolar terminology, hypomanic literally means “below manic,” meaning mild- to moderately manic. It’s how I usually experience the mania part of bipolar, which determines my diagnosis of Bipolar II, instead of Bipolar I, which includes full manic episodes that can cause major life disruption and can result in hospitalization. So that night I had the luxury of knowing that I wouldn’t get out of control along with the dread of knowing I would not sleep that night and probably the next, no matter how tired I was, no matter how thoroughly I cleared my mind, and no matter what medication I took, short of something a hospital might administer.

I knew it was pointless to fight it, but I still felt compelled to run through my mind-clearing meditation and try deep breathing. And actually my mind cleared rather quickly, since I have a good deal of practice in that area. My mind, with all of its musings, plans, thoughts, and analytical ramblings, is under my control with little effort. But my brain is at the mercy of my neurotransmitters.

I used to experience insomnia when I had depression and would toss and turn in bed for hours, letting my mind wander. It took me years to learn to rein it in, to train it to let go of all conscious thought and allow myself to sleep. But during times of depression the neurotransmitters do not make the brain whir, this constant sensation of being switched on, even if you are exhausted. During hypomanic episodes, my tactics of clearing my conscious mind still work, and then I’m left with a wired brain that keeps whirring all night, even going so far as to produce random, racing thoughts that I do not recognize. Words and images flood my brain, and I don’t know where they come from. It’s almost like I’m in someone else’s head, trying to make sense of their day, their memories, when I have no idea what they’ve experienced. And no amount of mind control makes it go away. Prior to my diagnosis and being put on medication a year ago, my brain would go so far as to cause auditory hallucinations during these episodes. Not voices, but sounds that my subconscious knew would disturb me, since I was already unable to sleep. You know, adding insult to injury.

This week was actually my first hypomanic episode since starting my current medication nine months ago, and I figured (hoped) that the medication would keep it in check. I was right – I only had two nights of disturbed sleep (and the second night responded fairly well to some OTC sleeping medication, surprisingly) instead of the usual four nights or more. My brain unwired itself more quickly than before, and I am nearly back to “normal.” I’m also more determined to keep a closer eye on my triggers – stress, irregular sleep patterns, and not keeping alcohol to a minimum. Awareness, as with any difference, leads to understanding.

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I can make jokes about it, like making a hypomanic episode sound like an ad, because humor is what gets us through the day, through our often overwhelming lives, but I never lose sight of the fact that bipolar is a typically misunderstood, mystifying disorder that can cause real misery as much as perceived elation. But sometimes, if you’re lucky, the elation is real too, and life is good.

Surfacing

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In 2008, when I was a new blogger, I would find a few blogs that I liked and read them for a few months, and then the blogger would stop blogging. Their last post would be a fairly typical post for them, with no indication that they were going to stop blogging or needed to take a break from it. So I would keep checking back and wonder where they were. And after a few months I remember thinking, if they were going to stop blogging, whether for a while or permanently, why didn’t they write a post to that effect? Why leave us hanging? What gives?

Of course, since last year I did that very thing, I now know the reason. It isn’t because they wanted to leave anybody hanging. It isn’t because they were trying to encourage anticipation or garner attention. It’s simply because they didn’t expect to stop blogging. And probably because of a lot of other things they didn’t expect.

For instance, they might not have expected their site to have been hacked, as mine was shortly after my last post (I must have garnered some attention). Nobody expects that. Neither did I expect my feed to be invalidated (and as bloggers know, having your feed invalidated is a bad thing – cost me $150 to have it fixed). But the upside was getting to rebuild my site and deciding to add some new features, including a page for my Editing Services and a revised About page (less about events, more about what I believe in). It’s been time consuming to rebuild, but also therapeutic.

And boy, did I need therapy. I suppose that was something I did expect. But I didn’t expect that it wouldn’t make everything all better. (Does that make sense?) I somehow thought that with all the time (and expense) I put into psychiatric care and therapy that by now I could go on my merry, well-adjusted way. I didn’t expect that my medication would make me feel dull, uncreative, and sluggish. I didn’t expect that I wouldn’t be able to write for over six months.

I didn’t expect that when I would try to sell my house again, after owning it for nine years, that it would not only be worth less than when I bought it, but less than what I still owed on it. And so, one stress-filled short sale later, I downsized to an apartment less than half the size of my house. I had thought my year of letting go was over, but I found out that I had a lot more letting go to do! My Goodwill tax deduction is going to be pretty substantial, for one thing. But we are settled in our new place, and Nigel can still ride his bike to school, which is important for him.

Nigel. I did not expect Nigel to continue to have seizures. I also didn’t expect that increasing his medication would cause severe aggression, necessitating police involvement. I didn’t expect that my sweet, funny, gentle son would be replaced by an angry, volatile, downright mean stranger. Thank God the worst of it subsided after about a month. But it was a month of stress-filled phone calls and appointments with doctors and counselors, visits to police stations, and being on pins and needles in my own home. Now that Nigel has adjusted to his medication increase, I would like to say that since doubling it he has not had any seizures, but unfortunately he has. And I don’t know what to do. As much as I hate saying this, it feels like epilepsy has the upper hand. I didn’t expect that.

It’s not so much what we don’t expect in itself; the hard part is learning to accept it, to acknowledge that it’s now part of our identity, and ultimately deal with it. Constantly kicking our ribs to move forward, to not crawl into bed and cry (and when you’re wrestling with bipolar, that’s a tall order). But ultimately, curling up on the couch to watch a movie every night – escape – became a greater risk than turning the computer back on and doing what I believe I was put on this earth to do.

It got to a point where something in me couldn’t stay down any longer. I am surfacing. For one thing, I have a book to finish. It’s always been in the forefront of my mind, waiting for me to dive back in. And blogging, well, what can I say? I might need to take an unexpected break now and again, but for me it’s definitely a case of once a blogger, always a blogger. I’m a bit rusty, but I’m back.