Milestones

photo credit-Tim Green
creative commons license

Life is full of so many milestones for your kids-the first time they roll over, crawl, and talk.  Some kids hit all of their milestones "on time", some are delayed, and some never hit certain milestones.  Others, they hit some other milestones...


like the first time they're admitted to an inpatient psych unit.


Buddy Boy is almost 13 now, and his behavior has become more problematic since this last summer. He's been not only much more argumentative, but more angry (screaming, yelling obscenities, and sometimes hitting, kicking, and throwing things).  We've figured it was the result of puberty kicking in, and old medication regimens becoming ineffective.  Besides his autism and ADHD, Buddy Boy also carries a psych diagnosis, and has occasionally had suicidal ideations since he was at least 4 (it really hurt to write that last sentence).

We've been working with Buddy Boy's psychiatrist to get him evened out, but mounting behavioral problems (with daily calls from school) finally led to a mutual agreement that led to him having "homebound" school starting in mid-September.  We still haven't had an IEP to chart a future for school.

Over the weekend Buddy Boy was perseverating over an erector set project that we've been working on.  The kit is a bit above his level, but he's been wanting to do it, so we've been helping him alot.  Saturday Buddy Boy announced that we promised him we would complete it by the end of the weekend (neither of us had promised this, but he insisted).  I worked two hours on it with him on Saturday, and another two hours on Sunday.  Today he managed to finish it, but it (a motorized forklift) didn't work right.

When Liz pulled into the garage from picking up Sweet Pea from school, Buddy Boy was standing in the garage, reeking of the smell of week killer.  He spit two batteries out of his mouth before starting a tirade against Liz, telling her how this was all her fault, and that he had drank a cup of week killer.

Liz grabbed the week killer and Buddy Boy, told Sweet Pea to stay in the house, and sped to the Emergency Department (ED).  She rightly judged that she'd get there quicker driving him than calling and waiting for an ambulance.  She called me from there, where I joined her.

In the past, Buddy Boy has threatened to do things like cut himself, but we've always been able to fairly easily and quickly talk him into putting the knife down.

When I got to the ED, Buddy Boy was sitting on a cart, with a fairly angry look on his face.  He told me couldn't wait to get out of there, so that he could really get back at us.  Evidently he had repeatedly voiced to the doctors at the ED that if he went home, he would repeat the same thing.  So they wouldn't release him.  He admitted after awhile that he hadn't swallowed any batteries (he initially claimed he had, so they had to x-ray him), but still said he drank "some" of the weed killer, though from talking to poison control he was showing no signs of it.

He remained relatively calm until we took him to the unit.  They insisted he take off his "Ben 10" wristband, and he was told that neither of us could stay with him.  He lost it, screaming, crying, saying he wanted to go home.  Liz held it together, though it had to have been one of the worst days she's had.  She's only been away from him for a total of 4 nights since he was born (two to attend the out of state funeral of her mother, and two to take a short trip to see a friend).  I've been away to at least one conference a year, but still it will be hard tonight.

I'm just hoping he can get it together enough to get out of there quickly.  We've done anything to avoid inpatient placement, as I just don't believe in a "good" inpatient setting.

Prayers and well wishes welcomed.

If They (She?) Only Had a Heart

photo-Thomas Hawk
Creative Commons license

In "The Wizard of Oz" the Tin Man joins Dorothy, the Scarecrow, and the Cowardly Lion on a journey to Emerald City to see the Wizard, in hopes of obtaining a heart.  Paul Corby probably wishes all he had to do was stand up and fight a wicked witch.  Instead, he had to submit himself to a committee of people that dole out hearts for transplant at the Hospital of the University of Pennsylvania (or HUP, as they like to be called).

Usually the committees that decide whether you are "qualified" to receive a heart are fairly secret.  People within the institution may know who they are, but they don't usually put their names out for public consumption.  Such committees that dole out scarce medical resources have a long and storied history.  The original such committee was formed in Seattle when kidney dialysis first became available in the early 1960's.  This committee, dubbed "The God Committee", made decisions on who should be lucky enough to receive dialysis based at least partially on social factors (who had the best job, good character, etc.).  In later years the public was appalled by their somewhat arbitrary means of choosing who would get dialysis (live) and who would not (and would die).  Modern committees that decide who gets scarce solid organ transplants (hearts, livers, lungs, kidneys) have drawn up criteria that make things somewhat more objective (severe heart failure, low levels of oxygen, etc.).  Also included in the criteria are some "softer" things such as the ability to undergo complex medical treatment and emotional stability.

It would come as no surprise to anyone who has had to deal with the stares and snide remarks when you go out in public with an autistic person that the committee to dole out hearts at HUP declined Paul Corby as a suitable candidate.  Because, well, Paul's autistic.  Which means he probably appears to those who first meet him as a bit odd.  Maybe even scary.  Because he's different.  Liable to talk louder.  Or perseverate a bit.  Dr. Susan Brozena, a cardiologist at HUP, sent Paul's mother a letter that said

"I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior."

There was no indication that the group of people (if indeed, it was a group that decided.  There is some indication that Dr. Brozena consulted with only one other doctor) who decided this did not consult with anyone who actually treats autistic patients to determine his suitability to undergo treatment.  Dr. Brozena evidently feels that it's much easier, when a scarce organ is involved, to go for either money or fame, rather than to try and give out organs equitably.  In a scandal at Los Angeles' UCLA Medical Center, four members of the Japanese Yakuza received organ transplants, allegedly jumping ahead of others on the waiting list. Two of those Yakuza later donated $100,000 each to the medical center.  I'm sure HUP realizes that Paul Corby doesn't have that kind of scratch laying around ready to donate to them.  Which is perhaps why they wish he'd JUST GO AWAY.  Again, from the letter

...if you want to pursue transplant consideration for him, you of course have the option of a second opinion at another center.

 Autism is not a death sentence.  Unless, of course, it's combined with a failing heart, in which case it's enough to get you disqualified for a chance at a cure.

Other stories on this subject can be found in The Washington Post, New York Daily News, Strollerderby blog, and Wesley Smith's blog.

A change.org petition on this is located here.

HUP accepts comments here.

If you'd like to contact Dr. Brozena and let her know your opinion, her published email address is:

brozenas@uphs.upenn.edu

Her other published contact info is as follows:

University of Pennsylvania Health System
Heart Failure/Transplant Program
6 Penn Tower
3400 Spruce Street
Philadelphia, PA 19104

Office: (215) 615-0812
Fax: (215) 615-0828

I think that Dr. Brozena needs to know that it's OK to change her mind.

Say it Ain't So, Joe

Arrrrrggggh ...

After hearing of the horrendous shootings in a Colorado movie theater, I mentioned to my wife Liz that "At least no one has mentioned the 'A word'".  "What?" she said.  "You know, said that the shooter was autistic".

The next day, I hear that news commentator Joe Scarborough said,

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected."

 While I've come to expect such drivel from uniformed people that lump all seemingly similar things together, do I really want to get the same stuff from someone who is the father of someone on the autism scale spectrum?  No.

Well, old Joe felt the heat after his comments, and has backpedaled.

But that's not what bothers me. 

What bothers me is that Joe Scarborough has outed himself as one wholly disconnected father.  I mean, come on.  Who that has someone autistic in their family refers to them as being on the autism scale?  I mean, what responsible parent hasn't been to enough IEP meetings, read enough literature, talked enough to know that it's the autism spectrum?  And who, who has a son that struggles to be understood and to fit in, would even think of associating autism with what happened in Colorado?  I mean, how exactly will such comments lead to greater understanding and acceptance of those who are autistic?

Joe's phoning it in.  It appears he's the dad that mothers all complain about.  The one that disengages, backs off, and lets mom handle it.  The ugly, stereotypical disconnected dad. 

I'm sorry for Joe, and more sorry for Mrs. Scarborough and their son.

One small step for man ...

Many times, it's not the big things in life that make it worth it, but the seemingly smaller, more ordinary ones.  Such is the case this week.

Buddy Boy is now 12.5 years old.  We have tried to teach him to tie his shoes in past years, but never really had success.  Even though we really didn't push all that hard, it has been "one of those things" that has led to a lot of consternation and frustration all around.  Buddy Boy seemed to get to a point where he decided that he would NEVER be able to tie his own shoes.  But like riding a bicycle, I felt that that was not so, as he had plenty of dexterity, both to play video games as well as build all sorts of cool things with LEGO kits.  He can follow instructions for the LEGO kits pretty well, too.

We last took Buddy Boy shopping for shoes near the end of the school year.  It was obvious that there were extremely limited styles available in Velcro strapped shoes in his size (like 3 pairs over 6 stores).  We bought the style he liked the best of the lot, and resolved that THIS would be the year that we made a push to get him tying his own shoes, as we knew he would be much happier with the wider selection of really cool shoes out there.

We decided to wait until after our vacation, to give Buddy Boy time to relax after the stress of the school year.  Well, after a bit of resistance/bribing/coaching/reinforcement over the last two weeks, VOILA'!

Buddy Boy is now officially able to tie shoes!   He is to the point where if he doesn't get it the first time, he is able to start over, self correct, and get it right the next time.  This is a HUGE accomplishment.

Life is good (even if it's more than a bit HOT lately).

A Hero in New Jersey

I've seen a lot of stories that have almost made me come out of blogging hibernation.  But this one just speaks to me, on many different levels, that I had to put my 2 cents in.

Stu Chaifetz is a divorced 44 year old dad that lives in New Jersey.  His 10 year old son, Aiken, lives mostly with him.  I don't know what he does, but he strikes me as a "regular guy" that finally got fed up with being run around by the system, and found an effective way to get to the bottom of what was bothering his son, and correct it.  I highly encourage you to watch this video if you haven't seen it yet.



A couple of things strike me about his story, and how he responded to the school system and the teachers.  First of all, he saw behavior that was atypical for his kid.  Aiken never lashed out, but all of a sudden was reported to be hitting teachers.  I think most school systems are similar across the country.  No matter how "good" the school system is, the individual child is assumed to be the cause of the child's behavior, and the thought that it could possibly be from something happening in the school environment external to the child is never entertained (We're Professionals, We Can Do NO Wrong).  Stu tried to work with the system (he, like the rest of us, was left little choice).  He went to meetings, revisited the IEP, tried to institute revisions of the behavioral plan after a specialist observed his son.  But things still didn't feel right to Stu, so he dropped a small audio recorder in Aiken's pocket, and sent him to school.

Now, if a kid was randomly being harassed by someone at the school, it might take weeks to catch that person in the act.  But Stu caught this in one day.  ONE DAY.  Which tells me such things were happening MOST DAYS.  Rather than being in a nurturing environment, Aiken is told to "shut his mouth" and called a bastard.  His teachers (by this, I include whoever it was-teacher or aides-that are caught on tape) display no sense of proper decorum, and instead exploit Aiken's anxiety regarding going to his mother's for the weekend by taunting him.

I have long advocated for audio visual recording in all public areas in a school, tapes of which would be available for review to parents and outside neutral parties whenever an "incident report" was filed on a child.  Audio and video recordings are great "neutral" observers.  Just ask Rodney King, as well as the truck driver that was senselessly pulled from his truck and beaten after that incident 20 years ago.  Incidents like what happened to Aiken surely take place every day across this country.  I am sure that most teachers are good, hardworking and dedicated to the welfare of their students.  And I suppose that although most of them might initially feel uncomfortable knowing that their actions were subject to review, most would also realize that such tapes could also be used to exonerate them if they were falsely accused.

My son Buddy Boy was almost expelled from Kindergarten 6 years ago, mostly because the principal of the school had it in for him.  It took nearly a year, a lawyer, and lots of money to straighten that out, but after being transferred to another school, he did fine.

Stu Chaifetz has repeatedly said that he's not at war with the school district.  He's even said that he doesn't want to sue the district.  He only wants what each of us would want for our child-justice.  He wants an apology, and he wants those involved to find other employment.  Unfortunately, the teacher from the classroom has been reassigned to the high school.  Stu, unsurprisingly, is steamed, and has started lobbying the state legislature to pass a law to try to prevent such a thing from happening again.  Meanwhile, Aiken's former teacher has hired a lawyer and threatened to sue Stu.  Stu has basically said "Bring. It. On."

I wouldn't bet against Stu in that matchup.