The Brain Shell Game

With all the awareness that's been raised over the past several years about autism, many people now realize that there are several forms of this organic brain disorder- gradations, if you will. Autism is a spectrum, including Pervasive Developmental Disability - Not Otherwise Specified (NOS) on one end, Asperger's Syndrome somewhere in the middle, and severe, non-verbal autism on the far end. They have symptoms in common enough to group them as autism spectrum disorders, but different enough to separate into different diagnoses.

Mental illness - another organic brain disorder - is no different. No one is simply "bipolar" or "schizophrenic". It's usual for someone with a mental illness to have their diagnosis refined over time along the spectrum as symptoms evolve or, as is often the case with children, symptoms are better defined with age. And, with children, it's not uncommon for a child to be thought to have one of several types of organic brain disorders, and have that diagnosis revised over the years.

How could this be? It's relatively easy to understand, if you understand how often the symptoms of one issue overlap with the symptoms of another. Let's do a little experiment. I'll list some symptoms, and some possible diagnoses, and let's see if we can match column A with column B:

Symptoms:

• Difficulty or inability to read social cues
• Impulsivity or inability to wait for a turn
• Easily agitated
• Angry outbursts / tantrums / rage
• Trouble staying focused
  
• Repetitive behaviors / rituals
• Language or speech delays
• Inappropriate laughter or crying
• Odd or irrational speech
  

Possible Diagnoses:

• Early Onset Bipolar Disorder
• Attention Deficit Disorder
• Early Onset Schizophrenia
• Autism
  

Ding! Time's up. Which one of the brain disorders do the symptoms suggest? The answer? All of them. All four of these illnesses can have any or all of the symptoms listed. When you wrap your head around that, you realize what an amazingly inexact science psychiatry is.

This is our history with Tim. Tim was first diagnosed with PDD-NOS, an autism spectrum disorder, at age 4. He was treated at one time for ADD (I'll blog about that sometime - what a nightmare). His diagnosis evolved to mood disorder - NOS, to bipolar disorder - NOS (NOS basically stands for "we don't know yet"), then Bipolar Disorder Type II, Then Schizoaffective Disorder. And, since he's only 15, I don't begin to think we've nailed down a diagnosis yet.

WARNING: MINI RANT BELOW

This is what aggravates me about people like Jenny McCarthy, who proclaim they have "cured" autism. I would bet her $1 million that her son has never truly had autism - that was just his primary diagnosis. People like her are dangerous - they give false hope to parents who are struggling to help their children who may have some actual brain disorder, and, I feel, damage the cause of those truly trying to find a cure for and help parents dealing with autism in their families. I feel confident that, someday in the future, Jenny would be writing me a check, if she'd take that bet.

When you boil it all down to its most base form, the diagnosis isn't really all that important. It's not like you'll wake up someday and say, "wow, my child is schizophrenic - now I know what to do!" The diagnosis doesn't change the child, his or her symptoms, or how they must be managed. But having as accurate a diagnosis as possible does serve a purpose: for us, it got us the services we needed to get appropriate care for Tim, qualified him for specialized schooling through the school district, and got our insurance company to cover some very expensive medications. None of these things would have been possible without his current diagnosis. It's been a shell game - lifting a new shell every time the symptoms seemed to evolve, to find a new doctor, a new treatment type, a new medication, and a new DSM-IV to help line up the support we've needed. Right now the ball is under the "schizoaffective" shell, but I have no illusions that it will remain there the next time we rearrange the shells.

Gimme Some Space

We get a report every week from Tim's caseworker at ODTC that tells us how his week went. For the past several weeks, Tim has been agitated by the voices (worse than usual), restless, has run off his floor /away from staff / out of class several times, and required physical restraint to keep him from hurting himself or others at least once a week. This is par for the course this time of year. Tim's cycle has always been for him to head towards full-blown psychosis by late February or early March, and it seems this year will be no different.

A lot of Tim's anxiety centers on personal space. Or his perceived lack of personal space in many situations. Tim absolutely cannot stand having anyone else touch him or get close to him unless he has given explicit permission for that touch or closeness to occur. This makes things that seem normal for us absolutely intolerable for him - like walking on a crowded sidewalk, or waiting in line at the grocery store. We took the family to Walt Disney World in January of 2008, and, thank goodness, Disney has a program where families of children like Tim can get a special pass that lets us go, for lack of a better term, in through the out door on most rides and shows (we called it the "magical fast pass" - read about it here). This meant Tim could enjoy WDW on his terms, without having to deal with the anxiety of standing in a line surrounded by strangers bumping into him. We would absolutely be unable to take our family on a trip like that without that sort of assist.

There are some activities I enjoy that Tim either has already had a bad reaction to, or I know, will never be able to enjoy. Tim must have commercial grade earplugs for any type of fireworks display, and even then, we have to be ready for the need for a hasty exit. Town festivals and parades are iffy events at best. Both Tim's little sister and big brother have been to and enjoy rock concerts. I wouldn't even begin to consider that with Tim, even though the idea of the concert intrigues him. Even certain sports are out of the question. Can you imagine confining Tim on a ski lift? If it stopped, he'd jump off, I'd fear. And the fact that it doesn't stop at the top would elicit panic of an entirely new type.

This lack of ability to deal with anyone in his personal space or touching him without explicit permission is, as I look back on it, something Tim has had his entire life. As a baby, Tim LOVED his "saucer" - the sort of second generation walker where he could stand up in it all day, but it didn't go anywhere. This thing. He wanted to be in it all the time, observing everyone, without having to interact with anyone. As he got older and more mobile, he came to us for affection when he wanted it. He didn't like to be picked up when he could walk, unless he needed cuddle time. I called him my "cuddle bum" at that age, because he'd just come up and crawl into my lap when he wanted, tucking himself tight under my arm, balled up against my hip. But if I wanted affection from him, he'd toddle away. Always on his terms, when he needed it.

Now, the other half of this coin is Tim's complete inability to respect anyone else's personal space. Irony of ironies. Tim will practically run towards someone if he wants to interact with them, coming within millimeters of their face, touching and petting them repeatedly. He will snatch items he wants from anyone's hand, child or adult, authority figure or not. He stands unnervingly close to you when he is excited by something you do or something he anticipates you may do. If you ask him politely not to stand so close or not to touch, he gets upset. If you ask for the item back that he has snatched from you, he might sheepishly turn it over, or he might start running. If you touch his arm in response to his petting yours, he will most likely shirk your hand away and sternly ask you to respect his personal space. It would be comical if it wasn't so obvious that he is completely unaware of his compulsive need to touch you.

Tim works a lot in therapy and school on personal space, both him needing to respect the space of others, and not being so touchy with his own. It is one of his most overwhelming challenges in dealing with this disability. But if Tim is ever going to be able to interact with the public - in the grocery store, on the bus, maybe at a job or group home - Tim is going to have to learn how to soothe the obsessive need to touch others, and calm the paranoia in his head about others being near him. This is our highest hurdle, behaviorally.

Superman - It's Not Easy

BringChange2Mind has been posting song videos that BC2M members have requested on Facebook this week. I thought I'd share my request. Tim has had an obsession with Superman since, well, since he could express it. He carries this affection for Superman through today.

No song has ever described what I feel it must be like to be Tim as closely as this one - Superman (It's Not Easy) by Five for Fighting.

Exhaustion

I wrote the following post as a response to a discussion about the exhaustion of caring for our kids on Michael Schofield's yahoo group of parents with mentally ill children:

All I can offer is the picture of a teenager who has been dealing with the voices and hallucinations since childhood. We didn't realize he had them until he was about 9, keep that in mind as you read.

Tim had, what we called, a very active imagination as a child. He had imaginary friends (we thought) and we accepted that as fine. When he talked about other "people" he talked to, we accepted that idea, thinking it was an active imagination.

We dealt with the rages and comatose behavior as symptoms separate from the idea of his "imaginary friends". When we finally became aware of what was really going on, we still didn't really correlate other psychotic behavior with the voices. We didn't know what we know now. But Tim's "friends", while still there, he spoke less about as he got a bit older.

When we finally put all the pieces together, at about age 11, we worked hard to instill the idea in Tim that his voices weren't good or bad, but, in answer to his questions to us, we did tell him that we couldn't hear them, but we believed that he did. Around 11 or 12 he began volunteering information about them - there are three, that we are aware of, with distinct "personalities". Only one of his voices - "The Screamer" he calls it - scares him. As "The Screamer" became more prevalent, this is the voice that told Tim he was bad, suggested he kill himself, demanded he hurt others, or run away. He began to learn that, if he would ask us or his therapist for help when "The Screamer" was overtaking his thoughts, it would help. This was before meds, and way before clozaril. His other two voices he has described as one, scared / paranoid of everything and one, helpful and friendly. We suspect, from things he has said, that they have names, but he has never shared the names with us.

Tim was, by this time, very aware that his voices are in his head only, and he went through a period where he was very angry that he had them. He figured out all on his own that this wasn't "normal" and started to refer to himself as "bad," particularly when he gave in to doing what they prodded him to do. We tried - and continue to try - to let him know that the voices don't DEFINE who he is. It hasn't been always easy to keep our cool, particularly during periods of deep psychosis, but we constantly work - as do his therapists - to reinforce to Tim that he is NOT his voices.

Tim has never identified the voices as part of some other world - he relates to them sort of like shadows - not always visible, but always there, behind him, around him. The clozaril has helped, to an extent, tamp down their intrusion into his life, but he still has them around most days, and will periodically lapse into complete psychosis - mostly rage, followed by a prolongued (hours or days) of catatonia, when he is all in his head, and getting him out is difficult.

Tim still carries the thought that having the voices is not normal and means there is something wrong with him. This is good and bad - good, because he takes his meds religiously because he knows if he has a disease, medication helps keep him well, and bad because he has this concept that there is something wrong and different about him. It's also bad because if he is trying hard to "be good" (read: stay present and out of psychosis), he will deny his voices are still around to try and appear "normal". This is what we're working on now - continuing to reinforce that the existence of the voices isn't "good" or "bad" - but there are helpful and not so helpful ways to deal with them. His "paranoid" voice has issues with personal space and noise, and seems to be the voice he hears most when he has anxiety. "The Screamer" seems to be most prominent seasonally, and seems to be the trigger of most psychotic behavior. The "friend" seems to be most prominent right before / at the beginning of periods of mania - not sleeping, constant giggling, nonsensical speech, etc. He has expressed that he can "shut them off" - or out - but usually this requires some other activity that takes all his concentration, still. Like a movie (the more action the better - more to concentrate on), music, preferably in headphones, sports. He will not read - too much in his head. It takes all his energy to work on something at school at his desk - too much in his own head. If he is struggling to stay out of psychosis, he will self-isolate by sleeping if there is nothing to keep his brain engaged.

Tim draws and paints almost daily - the only activity that is "in his head" (where he has to think to himself) that he enjoys.

Tim has lost, it's been estimated, somewhere around 20 IQ points since the age of 6. This has been attributed to the psychosis, but no one can say for sure. He scores high in patterns, sequencing, and memory, but low in language (both expressive and receptive). I've been told it's "unusual" to have as disparate of scores in these areas as he does, leading us to believe that the psychosis may not actually be lowering his IQ, just his ability to create and process language with the "outside world".

Blessings - Even If They're In Disguise

I read back over my last few posts a few days ago and realized something....I'm a whiner! Man I can sure whine and bitch when I want to, can't I? Pathetic! Especially in light of some of the real tragedies and hardships out in the world. The death and chaos in Haiti after the recent earthquake. The poverty and violence in Darfur. The millions of unemployed and uninsured Americans. The Packers losing in the first round of the playoffs (just seeing if you're paying attention....ha ha).

When I'm stuck in the middle of Tim struggling with his voices and rages, and my daughter being, well, 14, and both me and Tom buckling under a string of days that seem to be out to get us, it's sometimes hard to remember that we have a pretty good life. We are blessed, really. We have a nice home in a good neighborhood and an excellent school district. We have friends and neighbors we care for and that care for us. We have a large family that, for the most part, is supportive and loving. We have three children that, even with their separate challenges, are amazing, unique individuals. We have enough money to supply us with all that we need and most of what we want. Really, in this life, what more can you ask for?

My New Year's resolution is to focus on the blessings life has bestowed on me, and try not to be too whiny when there is a string of days that seem to give me more than I can handle. My hope for you is that the blessings of your life are enough to sustain you and buoy you up above the water when you feel you are drowning as well. My life is showered in blessings, even if they sometimes come in disguise.

Help!

My daughter, who has always displayed some signs of Reactive Attachment Disorder since we adopted her 10 years ago, has now decided she'd rather starve than be around me or Tom. Since December 29, she stayed in her room all day, every day, no food, no drink, no interaction with anyone unless Tom and I both leave the house. Then she interacts briefly with our oldest, eats, and runs back to her room before we walk in the door.

When I confronted her about it, she said it was because she wanted "quiet," and that Tom and I are always mad at her. When I asked her what she meant by that, she said that we always get mad because she doesn't clean her room, doesn't feed the dogs (two of her three chores), and we want her to ask for help ad we get upset when she doesn't ask.

Then she proceeded to tell me she wants to run away from home because I won't take her to the salon for hair extensions.

For the past decade, we've discussed with her, over and over, that she only gets in trouble for two things:

• Lying
• Refusing to ask for help when she needs it

One big bone of contention between us the past year has been her hair. As a black child in a mostly white town, she hates her curly hair. She wants it straight, or she wants it braided with extensions. I've taken her to black salons, and I've learned how to cornrow, how to blow her hair straight, etc. But...she doesn't want my help. And I've stopped taking her to the salon because, once her hair is done, she refuses to ask for help taking care of it - yet hasn't learned how to care for it because she refuses help in learning how - and I won't pay that kind of money for a 14 year old to get a hairstyle that will be toast in a day and a half because it's not taken care of.

She won't ask for help, from anyone. Even at school we have issues with the teachers tying to get her to ask for help. It's pathological.

So - we've found a therapist for her. She's going once a week. She had a year of cognitive behavioral therapy when she was 8, and after a year of weekly sessions, the therapist told us - no joke - that she was a "lost cause" and there was nothing she could do for us. Can you believe that?

But...we're going to try it again. I'm sure some family therapy will be involved as well. Something has got to work. Since we've had the time to focus on her - which she, of course, hates - we're realizing just how bad her refusal to ask for help is. She was content when we were focused on Tim at home - we couldn't get on her for being a recluse. I just hope it's not too late.

The Hidden Cost of Me

Very interesting guest article in the Harvard Business Review on the cost of Mental Illness to businesses - especially in regards to parents of children with mental illness.

http://blogs.hbr.org/friedman/2009/12/the-hidden-business-cost-of-me.html