My Son Aidan’s Schizophrenia

13Mar/1022

My Son Aidan’s Schizophrenia

Yesterday was Aidan's 17th birthday. He's my middle child, and he has an older brother and younger sister who are both well-adjusted, happy kids. He's got his pal from camp, Seamus, here. Seamus has his own issues, whatever they are in particular. His other friends are largely borrowed pals of his older brother, who's off at college at Marquette, in Milwaukee, my hometown.

Today's the party, and we've had cake and gone up to Church Street in Burlington, and made dinner, and now they're all watching Watchmen, one of Aidan's new favorite movies. He got sick when he was 9 and we were fortunate to have gotten involved with the NIH in less than a year, where he finally received a formal diagnosis of Childhood Onset Schizophrenia. It's very rare, so rare that the folks at the Brattleboro Retreat, many of whom have had long careers in clinical psychiatry, had never seen a case and therefore could not diagnose.

ABC is doing a series on the disease. Oddly, in the episode that I saw, all of the schizophrenic children that they covered were girls, although the condition is considerably more common in boys. The Dr. Rappaport that's in the segment is the one responsible for the day to day operation of the ward at NIH, where Aidan was patient 49, I believe, in the sixth or seventh year of the study, so rare is the condition.

We are among those who treat the apparitions, when they come, as figments. Still, if one bothers to view the comments at ABC, one finds that there are all sorts of people who wish to blame the parents, for one reason or another. If you look at CT-scans of the brains of schizophrenic children as compared with those of normal children (in my case, of their siblings) you will recognize instantly that there are fewer convolutions in the brain. In short, these people don't have any idea what they're talking about.

To live with madness is no easy task. It is painful beyond telling to hear your child say that you're not his real parents, but some kind of fake substitute, that you've killed him, and that he's a ghost. Others are critical for saying that you've taken the easy way out by putting your child on medication, even though doctors (and brain scans) indicate quite clearly that the longer the schizophrenic goes between delusional crackups, the more normative their thoughts become.

I'll be headed with Aidan down to NIH in June for another study about transcranial electromagnetic impulses (low voltage) which seems to have a significant short-to-middle term benefit for some patients. What can I tell you? Like everyone else, I'm just muddling through and doing the best that I can do.

Dan Collins

Dan Collins is a dude who blogs. He used to blog elsewhere. Now he blogs here.

Website - More Posts

Filed under: Too Lazy to Categorize Leave a comment

Comments (22) Trackbacks (1) ( subscribe to comments on this post )

Sara (Pal2Pal)
March 13th, 2010 - 21:31

Oh Dan, my heart goes out to you, your wife, Aidan and his siblings. Schizophrenia is a family affair.

My roommate after college at my first apt. called last year to tell me that her 4th child and 2nd son, a young man who was Valedictorian of his h.s. class and then went into the Air Force, had eaten his gun at the age of 21. He left letters to each of his parents, his 3 siblings, and his living Grandparents telling them that he did not want to end up burdening them with his recently diagnosed illness. He died alone in a crummy hotel room so that, according to his letter, there would be no chance that one of his family members would be the one to find him first. It was particularly hard on my friend, his mother, as her own mother had also committed suicide after years of treatments for mental illness.

Aidan, at least,knows the support he has, but my friend and her family never even had a chance to tell their son/brother that they would be there for him as he was diagnosed by AF doctors and never told them. He said in his letter that after the diagnosis, he researched what his life would be like in the years to come and could not bring that home to his family.

I cannot even imagine the pain that has to come from knowing that ignorant people would blame you as parents. How cruel some people are. Schizophrenia is a terrible disease and one that can bring heartache and hardship. One that needs all the support the sufferer can get and even more support for the family who must deal with it.

I had no idea that schizophrenia could strike children. I always thought it came on in the early twenties or later. How frightening for you and your wife and how very frightened it must make a child, when they can’t comprehend why their mind is betraying them so.

My prayers will include Aidan and the researchers trying to find a way to give those afflicted some sort of normalcy.

Like or Dislike: 1 0
( REPLY )
dicentra
March 13th, 2010 - 21:46

there are all sorts of people who wish to blame the parents

Holy smack. People still think that? Of all the mental illnesses, schizophrenia is the most obviously organic, unlike a mood disorder (somewhat organic) or personality disorder (totally inorganic).

I hate people. I really, really hate people.

Like or Dislike: 0 0
( REPLY )
- thor's mom
  March 14th, 2010 - 03:51
  
  Giving birth to thor made me hate people.
  
  Like or Dislike: 0 0
  ( REPLY )
Johanna
March 13th, 2010 - 23:39

My heart goes out to you as well. I’ve never had to deal with a situation like this one, so I can’t say I know what you are going through, but you have my prayers and my thoughts, even though that’s not much…

Like or Dislike: 0 0
( REPLY )
in yo face, live and direct, it's thor
March 14th, 2010 - 04:07

Congrats, Dan. Enjoyed the read. Nicely done. See there, once you separate yourself from the lumpen crowd of snarling unwashed r-wingered hate-spasmatics, you have within you stories of compassion and hope.

A couple of months ago my ex-brother-in-law died of a heart attack. He was too young, 35, he’d just turned 36 actually, but he had had heart problems for awhile. I’ll always remember as the kid who followed me around like a waddling duck back in my HS years. He wasn’t cool, sort’a a four-eyed outcast, but hey, I wanted in his sister’s pants, or was in his sister’s pants, depending on the timeline, and so I let him hang around, in other words gave him more attention than he deserved per the teenaged order of coolness. Eventually “can Michael come” turned into “check and see if Michael wants to go” when me and his sister were going for pizza of a movie. I liked the four-eyed skinny kid, and I he took a shining to me, hahaha.

By age 19 Michael was diagnosed with full-blown schizophrenia. Prior to the diagnosis he’d shot himself in the head once (he survived) and later leveled a shotgun at his other sister and spent a few rounds in her direction. Never a dull moment!

Micheal helped me re-sod my entire backyard (1/2 acre), re-painted almost the entire interior of my McMansion and, together, we won many a water hose war against invading wasps. Once you have schizophrenia your world becomes pretty small, a few old friends still call occasionally, a few people you meet in group therapy, doctors, and family. Since Michael shot at his sister and since his brother was a retard, they weren’t active in his life. So my ex-wife and her Mom and Dad were pretty much it for his family.

Michael knew all too well he was schizophrenic. Eventually when he felt himself losing touch he’d drive himself to the hospital emergency room. I remember the phone calls, where is Michael, he’s missing, and then the relief that he’d checked himself in, then his father making sure it was the right hospital, had to be county, with the right doctors. Michael had long ago fully soaked his Dad’s insurance plan’s mental health cap and so he had to go to county. He could break the bank otherwise.

And this is where I lay it out and let you know, and I knew it even before Dan wrote “I’m not against the goals on health care reform” that Dan knows the end game for our health care sytem is treatment for all our citizens who are in need and not merely for profit and a insurance co.s’ bottom line. You can’t not know, Dan.

Nobody wants to be terminally ill. Nobody wants to be schizophrenic. We are our brothers’ keeper. And all our brothers are our brothers, black, white, Commie, Baptist, etc…

The thing about Michael is he always gave you two-times in return. He wanted camaraderie. He desperately wanted to be useful. My house never needed painting. His dad’s farm never needed the back entrance road that he cut with a backhoe. I’ll miss that guy. He was a very cool dude. A true giver. As much as he could, he gave. He never deserved the financial knife fight he and his family went through for him to get treatment.

I stand with Archbishop Oscar Romero, and so go ahead and call me names and cringe when I prove to be the better name-caller. It’s not about soc-proggs, the NYTs, ACORN, Obama’s political party, dressing up and holding up a ridiculous placard in a fit of street theater or anything of that sort. It’s about maintaining a level of decency, not delusions of enemy elements within our society.

I desire for the bar of decency to be raised in America. Health care reform, now.

Death panels! Political hucksterism! Eat me, and then eat the trans-gendered gerbils that scurry up Eno’s fat ass. All poli-wingereds are douchebags, and always will be.

Like or Dislike: 0 1
( REPLY )
- thor's mom
  March 14th, 2010 - 04:41
  
  Fat, drunk, and stuck in the closet is no way to go through life, son.
  
  Like or Dislike: 0 0
  ( REPLY )
- Bob Reed
  March 14th, 2010 - 08:39
  
  You had a noce story going there thor, until you had to insert all of the usual Obamist talking points, and misunderstood biblical quotes. And, as to being one’s brothers keeper? What’s up with your boy O!, and his struggling relatives in Kenya? I mean, if he sent them a couple of hundred, the whole lot of them could live like movie stars for an entire year instead of in near privation. Why is it so easy for some, like Obama and Biden, to be charitable with other people’s money but not their own? Kind of makes you wonder, doesn’t it..?
  
  What you misinterpret, and what Romero would no doubt straighten you out on, and I’m talking about the actual Bishop Romero here, and not any Hollywood cartoon version that you may be conflating with reality, is that Christ calls us to individually give of our time, talents, and treasure to serve others; to band together by choice and free will to do so, and not through any coersive government dictates. We render unto Caesar what is Caesar’s, and unto God that which is God’s. We live under Caesar’s law’s and social compact, but individually are called to honor God’s law’s and live as Christ taught us, most notably in the Sermon on the Mount as well as in all his other acts, teachings, and way of life.
  
  And perhaps among the most important was that we came to God, through Him, via a free will choice. Many times the Apostles wondered why he didn’t smite those who oppressed him, or force people to worship God; but that was not what it’s about…
  
  And that part of why Obamacare is so far off the mark, becuase it’s about mandates, coersion, penalties, and force; supposedly in the name of compassion…
  
  And let’s not even begin to talk about the lordly arrogance of the parlaimentary connivances in the House and Senate being used to impose this on Americans against the will of the majority; by thise elitists who consider themselves “our betters”…
  
  So notwithstanding the poignance of your story, and I hope that it was real, why would you denigrate it by attaching a propagandistic finale to it?
  
  Character: it’s about doing the right thing regardless of whether anyone is watching, will notice, or if doing so is beneficial to you, and especially when doing so is difficult…
  
  Hard to understand for those who have always had it easy in life, or have lived a life of material wealth and power…
  
  Contemplate that, along with why Obama can’t seem to be bothered to be his own brothers keeper…
  
  Lack or character I’d suggest.
  
  Like or Dislike: 0 0
  ( REPLY )
Enoch_Root
March 14th, 2010 - 07:04

And what happened to your friend, Thor? What did he do once you were done marrying and casting off his sister? Didn’t keep up with him, did you?

Like a used condom, so are the days of your life.

Like or Dislike: 0 0
( REPLY )
- Emo's transgendered gerbil
  March 14th, 2010 - 07:40
  
  I don’t even live in the same state as my ex’s family. You should tone down your snarling.
  
  Like or Dislike: 0 0
  ( REPLY )
  - Enoch_Root
    March 14th, 2010 - 08:42
    
    oh – so it’s a distance thing: otherwise, I am sure, you would continue your relationship. when’s the last time you called him, me wonders…
    
    Like or Dislike: 0 0
    ( REPLY )
Joe Lynch
March 14th, 2010 - 08:49

Danny,

Very nice update! I am always amazed how mental illness is still viewed as somehow different than other physical illnesses.

You would never hear someone suggest that the parents caused their child’s cancer, diabetes, etc, yet somehow, mental problems are blamed on the parents?!? I don’t get it.

Aidan is wonderful young man and he will turn out just fine and that you can “blame” on his loving parents.

Hang in there!!

Joe

Like or Dislike: 0 0
( REPLY )
Dustin
March 15th, 2010 - 00:18

Of all the threads to not feed a troll, this is the one. Thor knows what he’s doing. He’s taking a really sweet and honest look into Dan’s life and trying to tear down that beautiful thing. Yeah, you could go on describing how that’s wrong or why Thor’s a bad person. It’s just helping him, though.

My sister has schizophrenia. My father always claims it was a problem since she was much younger, and I think there’s a real chance he’s right about that. It really is a miracle that my sister is relatively OK. I can’t accept the demonization of “big pharma” since their research saved my sister’s mind and I want them to profit enough to learn how to do even better.

She’s a happy person with a life. It’s not perfect, but it’s pretty good because she takes medication and has a caring family. Just before she was diagnosed, she was in such a bad situation that it’s surprising she’s even alive.

I wish you good fortune with your son. It takes patience. And health insurance. Sometimes, it’s really hard to handle her, but that’s what family is for.

Like or Dislike: 1 0
( REPLY )
Joe
March 15th, 2010 - 11:06

I am sorry Aidan and your family have to deal with this. It must be hard.

You are obviously a very good dad.

Like or Dislike: 0 0
( REPLY )
Joe
March 15th, 2010 - 11:09

I have friends with autistic children and they go through the same thing, getting blamed by ignorant people for a condition that frankly no one is even sure what causes it. People do suck some times. Blaming a parent for their child’s condition is (like this) is the height of suckiness.

Sucky people are generally self created. I do not blame their parents, I blame them.

Like or Dislike: 0 0
( REPLY )
- dicentra
  March 15th, 2010 - 12:48
  
  There’s some new research that suggests a tie with Celiac disease, an autoimmune condition.
  
  For whatever reason, autoimmune diseases are in some kind of an upswing. Dunno why. Maybe it is all those stray chemicals in the system. Maybe it is our excessive cleanliness.
  
  Either way, it’s definitely not the parenting. Autistic kids (and Aspergers, on the same spectrum) just have differently wired brains. No parent can cause that.
  
  Nor can a vaccine, lying Lancet-published articles to the contrary.
  
  Like or Dislike: 0 0
  ( REPLY )
  - KillTruck
    March 18th, 2010 - 11:54
    
    I’ve never heard about a tie to Celiac’s, but my autistic son is on the same gluten free diet that celiac’s use and it helps a lot.
    
    I don’t believe a vaccine caused his autism, but I’m far from convinced it didn’t contribute to it.
    
    Like or Dislike: 0 0
    ( REPLY )
  - meep
    March 18th, 2010 - 12:20
    
    Unfortunately, my son [almost 4-years-old, and autistic... seems "mild", but really he's too young to be making that judgment. I'll wait til he's an adult to see if it's "mild" or not.] has such a restricted diet due to his condition, we can’t do a completely gluten-free diet. He would starve.
    
    I recently read Temple Grandin’s autobiography “Thinking In Pictures”, which somewhat gets at the different mode of thinking and sensation that occurs in autism. It’s interesting seeing it from an autistic person’s point of view.
    
    But I agree something weird is going on. The frequency of the condition really is going up, and it’s not merely a case of diagnosis incentives. These kids are very seriously “off”.
    
    Like or Dislike: 0 0
    ( REPLY )
KillTruck
March 18th, 2010 - 11:55

Thanks for writing that, Dan. I’ve been curious about Aidan’s condition, but didn’t want to pry. You’re a great dad.

Like or Dislike: 0 0
( REPLY )
Victoria
March 21st, 2010 - 12:03

I am so happy I stumbled across this post. I also watched the episode ABC aired and I too found it funny that they were all girls. – However, I was pleased to see a report on the subject, because it is so rare. My son is now 14, and he was only officially diagnosed about a year in a half ago – even though he showed symptoms since the age of 5, when he started hallucinating… You mentioned taking your son to NIH … Is that the National Institute of Mental Health? I received an email from them sometime ago. They were interested in evaluating my son. I have thought about it, but they are so far away form me. May I ask – have you had a good experience with them? How is their program different than those in the community?
I understand how difficult it can be raising a child with schizophrenia, and I wish you all the best.

~V.

Like or Dislike: 0 0
( REPLY )
- Dan Collins
  March 21st, 2010 - 12:13
  
  Yes, that is the NIMH. On the whole, it’s been a very good experience. It’s very difficult having your child stripped of medications so that they can observe him before building him back up. You will find that while you are there, you meet others who have children with the same disease, and the information that you share with them, and the ongoing association, will make all the difference in the world. Subsequently, you’ll be in position to learn everything their is to know as new treatments become available.
  
  They will pay all the costs of your travel and your stay (and your child’s) while you are there. The Children’s Inn is very nice, and very helpful.
  
  I would think that the first difference from what’s available in a local community setting is that they’ve seen this much more often than any local physician will have. They’ll be able to adjust medications with better precision, and save you a great deal of heartache regarding his course of treatment.
  
  I, too, wish you all the best, Victoria. Stay in touch.
  
  Dan
  
  Like or Dislike: 0 0
  ( REPLY )
  - Victoria
    March 22nd, 2010 - 18:10
    
    Dan -
    
    Thank you so much for your personal insight and opinion on the NIH. I will be considering this option as my son has recently been deteriorating. I do have great support from the local mental health professionals – but perhaps it’s time to take a different route…
    Thank you again!
    
    ~V.
    
    Like or Dislike: 0 0
    ( REPLY )
Enoch_Root
March 21st, 2010 - 16:16

huh?

Like or Dislike: 0 0
( REPLY )