Hamster Brain Disorder

This post is more about my own disorder than it is about autism.  I have a disorder that is not clinically recognized, but I know it exists.  The diagnosis: Hamster Brain Disorder.  It is the feeling like the activity of your brain resembles that of a hamster on its wheel, reviewing the same conversation or incident  again, and again and again for days... months... Years!  I had this conversation with my aunt, Jeanie years ago, just after Naomi was diagnosed.   We were discussing another family member, Keith.   Keith has autism and at the time of this discussion, he was about 7 years old.  Shelia is Keith’s mother.

Jeanie: Shelia says Keith’s doing okay academically, but he’s having trouble otherwise.

Me: Yeah I heard he was sent home from school for having a meltdown.  That makes no sense.

Jeanie: Why doesn’t it make any sense?

Me: What did they send him home for?  To punish him?  He wouldn’t understand that as a punishment and it will not be any kind of deterrent to keep it from happening again.

Jeanie: They’d have sent home any other kid that had a meltdown.

Me: Well meltdowns are part of autism.  The chances of him having a meltdown if he didn’t have autism are zero.  It is like punishing a kid with narcolepsy for falling asleep in class or punishing some one with Tourette’s for swearing.  It is something that you really can’t expect the person to have control over.  Since no one was hurt and no one was in any danger, I just can’t see what they hoped to accomplish by sending him home.

Jeanie: I think it was just to give the teacher a break.

Me: The teacher a break?   That’s her job.  She gets summers, evenings, weekends, holidays.   Yes, the job can be tough, but a lot of jobs can be tough.  When I worked at the nursing home, I couldn’t call the residents’ children and say ‘Hi, Mrs. Smith?  Yes, your father just belted me and called me a whore. I think you’d better come pick him up.’

Jeanie: Well, I was a teacher and I know from experience that you just want to go in and teach and you don’t want to deal with these difficult behaviors. 

Me: He has an aide!  If the teacher was so distraught she could have sent Keith off with his aide while she had her break.

Jeanie: “Does he?”  [With a tone that said “are you sure about that?”]

Me: Yes, he does.

Jeanie: Well, I guess they could have done that if there were another room for him to go to.

Me: So you’re going to punish the parents for having an autistic kid, by sending the kid home because the teacher was annoyed by his autistic behavior and there isn’t another room to go to?  

Jeanie:  Hmmm… It’s a good thing Shelia wasn’t working that day.

It was clear that Jeanie didn’t want to debate this any longer.  We went on to another one and talk about Naomi’s schooling.

I expressed how happy and grateful I was that there was an autism scholarship and how annoyed I was by the labor movement and the teacher’s union for opposing it.

 Me: The unions  can’t say ‘the staff is trained, effective programs are in place and the parents are satisfied’ when it comes to special needs kids because they know none of that is true, yet they don’t want to give up the money to someone who can actually do the job.  So they say “Those people are using it for religious purposes.”

Jeanie: Some of them are using it for religious purposes. – [Using a  tone that says ‘This is a valid argument and I would oppose the autism scholarship too.’ ]

Arugh!

Forget the fact that she lives in a different country and couldn’t possibly have any data or experience on whether anyone was using the scholarship for religious purposes or not.  Forget the fact that I have explained that the school system is not meeting out needs and the autism scholarship is truly a Godsend (a secular Godsend, you understand.)  Forget the fact that many of the kids that would be using this scholarship, including Naomi and Keith, could not possibly be taught religious concepts because they have a tough enough time understanding concepts like “maybe” and “if”, “I don’t know”.   Forget that she knows that I am fanatically secular and there are thousands of others like me wouldn’t use it for religious reasons, even if that were an option.

She had just finished saying that as a teacher, she didn’t want to deal with behaviors common in people with autism.  Then she says that opposing the autism scholarship is fine because some (of these people that she imagines exist) are using it for religious purposes.  Did she address the fact that since many teachers just ‘don’t want to deal with these difficult behaviors,’ disabled kids are left without qualified instruction?   Is that alone not a good enough reason for the autism scholarship to exist?  Does the possibility of religion getting involved somewhere trump the right of a child with a neurological condition to get an education?

I have had this conversation in my head every day since this occurred.  I can’t get it out.  I think my points here are valid, but thinking about this every day is not valid. Of course, more offensive things have been said. Why am I picking on Jeanie so much?

I think it is because I have always thought of my aunt as one of the most accepting, tolerant and compassionate people I know.   If I thought Naomi needed a sex change operation, I think she would express nothing but support and encouragement to get the services we needed and to get insurance and/or the state to pay for it.  I have seen her listen to arguments in favor of having porn freely available at the library so that the homeless could access it, and not flinch. (I, on the other hand was vacillating between of rolling my eyes wildly and laughing at the absurdity.)   Yet, in this case the message is clear. “If your kid can’t fit inside the box built by the education system, we send him/her home.  The preferences of the teacher outweighs the needs of the child.  You lose because you have a bad kid.”   It scares me that someone as compassionate as she could think this way.  I wonder how I can convince others of the importance of getting our kids the help they need if even she doesn’t get it.   My aunt doesn’t have ill intentions.  Jeanie just doesn't get autism. When I talk to my aunt Jeanie about my parenting experience she says things like “Even if she didn't have autism it would be hard,” “Have you gone back to work yet?” and “Yes, I know what it’s like.”  I want to say “YOU HAVE NO F*&%ING IDEA WHAT IT’S LIKE!  WHEN YOUR KID WAS SIX, YOU TOOK HER TO SHAKESPEARE PLAYS, YOU FREQUENTLY HAD HER STAY AT FRIEND’S HOMES FOR SLEEPOVERS,  YOU HAD ME, AT 14, TAKE HER ON CROWDED SUBWAY CARS WITHOUT A DOUBT IN THE WORLD THAT WE WOULD ARRIVE AT OUR DESTINATION SAFELY AND TOTALLY FREE OF STRESSFUL ISSUES! DON’T TELL ME YOU KNOW SQUAT!!! YOU DON’T UNDERSTAND SQUAT!!”

Of course, she doesn’t understand squat.  This is a common struggle.   Many of the friends and family we have known to be understanding and supportive of us all our lives suddenly just don’t get it.  And if you have Hamster Brain Disorder, the fact that they don’t get it can drive you crazy!  I’ve got to get this conversation out of my head and realize the truth.   I will not be able to force anyone to understand.  Reviewing this conversation in my head hurts no one but me.   I need to focus on the fact that autism awareness is having an effect.  It will probably never make a difference to Jeanie, or thousands of others in her generation, but for millions of others, it’s making an impact.   More and more people really are getting it. In spite of the opposition, the autism scholarship does exist.  Insurance mandates are growing across the country and public schools are getting better at working with our kids.

My grandmother had severe Hamster Brain Disorder; my mother would likely admit she has a mild case of Hamster Brain Disorder and I undoubtedly have Hamster Brain Disorder.  (Unlike autism, I believe this is 100% genetic.) But there still is hope.  From now on every time I think of the above conversation with Jeanie, I’m going to remind myself of this story.  It comes from a Buddhist background, but can teach a lesson to even the most secular among us.

Two traveling monks reached a river where they met a young woman. Wary of the current, she asked if they could carry her across. One of the monks hesitated, but the other quickly picked her up onto his shoulders, transported her across the water, and put her down on the other bank. She thanked him and departed.
As the monks continued on their way, the one was brooding and preoccupied. Unable to hold his silence, he spoke out. "Brother, our spiritual training teaches us to avoid any contact with women, but you picked that one up on your shoulders and carried her!"
"Brother," the second monk replied, "I set her down on the other side, while you are still carrying her."

I’m sure Jeanie, forgot about this conversation seconds after she hung up the phone, I, on the other hand, am still carrying it.  It’s time to let go….