MyBlog , , , , , , ,

It's a Classic (Start Again)

We met with Bodhi’s inpatient doctor and social worker today and his diagnosis is…

 

Autism.

 

Specifically, what the doctor said is, “I see nothing beyond classic autism.”

 

I wasn’t actually looking for the “s word” (schizophrenia). I myself don’t see clear evidence of that. I keep looking at Bodhi and looking back at Jani’s past and trying to identify if there are similarities. I am trying very hard to not be denial like I was the last time. When I look back to 2008-2009, I remember the “imaginary friends” and the clear articulation of a world I could not see. Bodhi has no such ability yet. If he is seeing things that aren’t really there, he is not able to articulate that yet. Jani could tell the doctors in great detail about Calalini, 24 Hours, 400 the cat, the anthropomorphic numbers, etc. Bodhi barely talks at all other than to articulate what he wants in the immediate moment.

 

Which is the problem. Bodhi can articulate what he wants. Yet, when in that state, getting it does not calm him down. He goes through a list of things, as if he is frantically hoping one of those things will soothe whatever is causing his agony.

 

Because that is what it looks like: agony.

 

For the doctor, there is no sign of mood disorder. No sign of psychosis.

 

When I ask why Bodhi is the only autistic child I have ever known who has no problem with the lights and noise of Chuck-E-Cheese, I get no straight answer. When I ask why Bodhi happily socializes with other kids, perhaps not directly engaging with them in play appropriate to his age level but certainly aware of them and able to interact with them, I get no answer.

 

“Classic autism?” Maybe “new wave autism.” Does such a thing exist?

 

The upshot is that Bodhi is in a void.

 

That’s okay. I wasn’t expecting a diagnosis. Even though his teacher and his behaviorists do not see “classic autism,” he defaults to that waiting room because the doctors have nothing else to go on right now. I get that.

 

He’s been fine in the hospital. He’s cried for us a few times. He’s wanted to leave with us (and soon he will). But when I agreed to admit him, my greatest fear was that he would not be able to function in the hospital. He has, quite well.

 

And that is a problem that cannot be resolved. Physicians can only go by what they can see. I get that. Yes, they saw the videos. They saw him in the ER. That’s why they admitted him. But since then he has been relatively calm.

 

Symptoms always back off in the hospital and Dr. DeAntonio has acknowledged this. The hospital is a highly structured environment where there are always other kids and always activities going on. Bodhi does well in school for the same reason.

 

One of the misconceptions about psychosis is that it stays the same through all environments. It doesn’t. Like an animal, it will respond to its environment. The more engaged a person suffering from psychosis is, the less influence the psychosis has.

 

Makes me wonder where the “Idle hands are the tools of the Devil” saying came from. If psychosis is a “devil,” it definitely gets stronger when there is little to no activity.

 

Admittedly, I don’t know much about autism. I had assumed that autism remained fairly consistent across all environments while psychosis does not. Perhaps I am wrong about this.

 

Not that it really matters. What matters is that the environment that Bodhi needs is similar to the environment Jani needs: one of constant human activity. Susan and can’t possibly do that on our own. We are only two people.

 

But we don’t have a choice. There are no other options. The UCLA day program no longer accepts children under the age of 8 (a change from Jani’s time). We already have every service that is currently available.

 

On a side note, I really don’t understand why psychiatric wards still employ social workers. They are nice people, don’t get me wrong. I just don’t see their purpose. Their purpose is to find resources (the very definition of “social work”). I could understand their existence 20-30 years ago when services existed. But the services they used to refer departing patients to no longer exist. They are like clowns long after the circus has left town. The context for their existence is gone. I am sure they try but I imagine their rolodex has got to be pretty damn small by now. There is nobody left to call.

 

I wasn’t expecting a diagnosis. Were you? That’s not how it works. Treating mental illness has become the equivalent of treating a viral infection. They don’t know quite what it is and they don’t know how to treat it, so they send you home to rest and drink plenty of fluids. Your ear may hurt and your throat may be crimson but have no fever and your white blood cell count is normal. Probably viral. Go home and rest.

 

That’s fine. I am prepared. I got complacent. Bodhi needs 1:1 attention at all times, just like Jani. Once again for Susan and myself, it will be one parent, one child. It will have to be me with Bodhi because only I am still strong enough to physically hold on to him in one of his “tantrums.” Susan can’t. Bodhi is strong. From now on, I won’t take him out without back-up. I can’t risk reaching for my wallet to pay something and he runs off. I have to make sure I always protect his head. I have to tune out whatever looks may come from the general public and focus on his safety.

 

That means I will need my sleep. That means this may be the last blog for awhile. I can’t risk being tired because I was up writing. Or grading student papers. Or running the Jani Foundation.

 

Thankfully, the mission statement sent to the IRS is pretty broad. This is good because we will have to re-focus on what Susan and I and the other parents on the board with autistic/mentally ill kids can feasibly do while ensuring the safety of our children. Because it’s not like anyone is going to.

 

So we will have to figure out what the Jani Foundation can do for mentally ill kids without most of its board ever being able to leave their respective homes. Big plans are out the window. IEP support, we can do. Presentations on childhood mental illness while the kids are in school, we can do. Financial support because it’s hard to work when your child needs to be watched constantly, we can do (although not us individually-none of the JF board members can, even though we are always on the financial brink ourselves). That will be interesting. The poor fighting for the poor. Educational programs for SMI kids during school holidays we can probably do because Susan and I can take Jani and Bodhi with us.

 

And I think that is pretty much it.

 

In regards to Bodhi’s time at UCLA, the only thing I am actually upset about is that they won’t do an EEG, which his outpatient psychiatrist has wanted to rule out neurological causes. Bodhi had an inpatient neuro consult and they decided that, based on the lack of symptoms of seizures, it wasn’t worth the risk of sedation. I don’t know. They are probably right. There is probably nothing physically wrong with Bodhi’s brain. I just wish they would rule it out. It seems like taking a calculated risk with my son’s life, something I am not accustomed to UCLA doing with my children. “There’s probably nothing wrong, so let’s not look” is the attitude.

 

The truth is, of course, that they know insurance will balk at paying for it as they can’t establish medical need.

 

I wonder how many people have died of cancer that could have been detected earlier because their doctor couldn’t establish medical need?

 

The truth is, medicine in America is the best in the world…. once you are actually dying. Up until then, doctors are declining to run tests because they can’t justify it to the insurance company.

 

In the end, not much has changed in the six years since Jani started down this road. I have no idea if Bodhi is going down the same road. Like her, I will travel with him where-ever he goes.

 

But I can tell you the start of the road looks exactly the same.

 

Oh, one more thing.

 

“Classic autism” will protect Bodhi from criminal charges if in ten years, during one of his “tantrums,” he smashes someone’s nose in, right? “Classic autism” will protect him from being tasered or shot by police, right?

 

I mean, in America we don’t punish those who can’t control their actions due to a brain malfunction.

 

Right?

9 comments on “It's a Classic (Start Again)

  1. I am glad Bodhi is doing okay now. I just hope that you and his doctor will find a medication that works in ameliorating Bodhi’s tantrums. As long as Jani and Bodhi are getting early intervention, which they are, they will be fine, the earlier it is treated the better the prognosis. I worry about the same thing, Michael, what will happen after I have no support from my parents due to their old age. One thing is that we cannot give up no matter what, we need to change things so that everyone can get great care. I tried to get into the UCLA OCD clinic a while back–although they were nice, they wanted too much money, and my insurance would not pay for it. I lament the fact that insurance companies do that, deny crucial services, however, we can change things if we perservere. I am so lucky I found my doctor, much like you guys did, at the MCLA center–without his expertise, I would have been incorrectly treated. I am glad Bodhi is okay and I hope things will get better. I will see you guys next week on Saturday. 🙂

  2. I have an ASD and it wasn’t till I was older and we found some who could help me express what was going on in my head, that anyone knew that I also experince basic parnioa and that what would seem normal backround noise is super loud. When I was little I could go to places like chucky cheese becuase I lived enough in my own world, it wouldn;t be till hours later that I couldn’t handle it anymore and brake down or try to run, that was my claim to fame, so to speak. I still have tratums and I’m 23 but they are better, we found klopin works the best but the its hard for psycitrist when you have more then one thing going on. Austim isn’t allways austim. Also you may want to try a helmet for Brodhi, they make some cool ones and it will keep him from hurting his head, I know quiet a few ASD kids who ware them. Best of luck, and never give up,
    God’s there with you and we have to hope he knows what He’s doing, because I sure don’t 🙂

  3. http://www.semel.ucla.edu/service/abc-partial here says the ABC Partial Hospitalization Program (I’m assuming that’s the day program you’re talking about) says it accepts kids 6 to 12. Not that it matters, I suppose, since Bodhi isn’t 6 yet either.

    I was diagnosed with autism spectrum disorder, among other things, as an adult. As a child I don’t recall any problems with noisy restaurant environments. In fact I don’t think sensory integration problems started popping up until later on. It’s different with every person.

  4. Michael, have you looked at the web sites for either Autism Speaks or the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore? Both have fantastic lists of resources, and someone at either place might be able to help you find services in CA if UCLA isn’t getting it done. My nephew was diagnosed with an ASD eight years ago, when he was about Bodhi’s age, and with early intervention and support his progress has been remarkable. This is not to say that anything about his journey has been easy. His story isn’t mine to discuss on line in a public forum, but if you want to chat or if you and Susan think that anything we have learned from his experience could help, please don’t hesitate to get in touch by email. So sorry that you are heading down this road with Bodhi. Keeping you and your family in thoughts and prayers.

  5. May I know if you know of any child that has tried to kill themselves, to escape the feeling of sheer terror that they experience constantly? Not a voice inside their head telling them to kill themselves, but a desperate attempt to get away from the unbearable, constant feeling of sheer terror? Is that mental ilness too?

    1. I’ve heard of it. It could be mental illness. It could be something physical. It could be anything. But if you are asking if it could be be mental illness, then yes. Something along the lines of extreme anxiety.

  6. Thanks.All the people I’ve ever asked (including doctors) always shake their heads,give me a blank stare,say they have never heard of it,and then tell me it’s no big deal.No one ever takes it seriously.

  7. All I can say is I’m so sorry for all that you have been through and are going through now with Bhodi. You and Susan are very strong people. I pray that he will improve in time as Jani did, and pray for strength for you two to be able to continue caring for him as well as you did Jani. You’re so remarkable… I haven’t read your book but I can see your love for your children motivates your care for them. God bless you both.. only He knows why you two have to walk this road, but I’m sure you’re a help and inspiration to others who are in similar situations.