Monday, July 25, 2011

The Floaty Feeling

There's a certain feeling I get, that I've never heard anyone else talk about. So I finally decided to describe it as best I can, even though I don't really have words for it.

I call it the 'floaty feeling'. It's an unpleasant feeling, I feel like the world's not real, like I'm not connected to it. It's a bit like being overloaded, but it's different from that. It's not painful and things don't seem more intense - instead they seem less intense. It's also different from being dissociated, because I don't feel stuck, and the flavour of the feeling is different. (Told you it's hard to put in words.)

What causes this feeling is certain kinds of writing. Virtually all poetry does it. Some prose does too. Just now I got that feeling from reading Expecting Teryk by Dawn Prince-Hughes (around a third or so of autistic writers seem to write in the style that triggers the floaty feeling). Something about reading that stuff triggers some unpleasant, strange feeling in my head.

It's hard to describe exactly what kind of writing triggers this. It's sort of filled with a lot of emotional impressions and very little description and action. (Dawn Prince-Hughes' other book, Songs of a Gorilla Nation, didn't do this to me as much, though I caught hints of the floaty feeling there too.) But it's not just a matter of focusing on emotions without description or action. For example, writing like the kind I'm doing here is focused on emotions, but isn't the floaty kind of writing. It's the way they write, like everything is a metaphor, and words are used for their feel as much as their meaning. I really don't know how to describe it.

In the summer camp for young writers I attended, there were several kids who only wrote poetry and not prose. The majority wrote both. I was the only one who wrote prose but not poetry. I can't write poetry, can't even stand to read poetry or hear it read, because it's so intricately linked with the floaty feeling (I wrote a 'song without music' when asked to write a poem in that class). I also noticed that the writers who only wrote poetry, when forced (as a class assignment) to write prose, their prose usually triggered the floaty feeling in me.

I'd love to go into an fMRI and make myself read some floaty writing, just to see what my brain is doing when I get the floaty feeling. (Then I'd want to read something else right away, because that's the best way to get rid of that feeling.) Maybe I could get a chance someday. But for now, I'm just left with my struggle at describing it, and a nonverbal knowledge of exactly how it feels.

Wednesday, July 13, 2011

The Highest Functioning 'Nonverbal' Kid I've Met

I'm working in a new volunteering program. It's very similar to the last program, except that the kids are a lot higher functioning. Most are kids with ADHD, or else with specific delays in certain areas. Several are not officially diagnosed but suspected to have a disability.

The highest functioning kids in the other program would be in the middle for this program. And the lowest functioning kid in this program, a 10 year old autistic boy, would be average for the other program.

This autistic boy was described to me as 'nonverbal'. I've seen plenty of people refer to kids as nonverbal when they actually have a few communicative words, but this kid is the most verbal 'nonverbal' kid I've ever met. His speech seems to be at a 2 year old level - plenty of communicative words and phrases, but no sentences, and poor pronunciation. He doesn't seem to have any echolalia or receptive language issues.

Every other kid I've met who was called 'low functioning autistic' either had a very small vocabulary, or used considerable echolalia such that every statement made me guess what he/she meant to say. And most it was a puzzle to figure out how much they understood of what I said, and whether they were ignoring me or just not understanding me.

Not this kid. He's actually pretty obediant for an autistic kid, and it's very clear that he understands all the commands people have given him. And when he asks to do something, like 'go to church' (we meet at a church, go out to whatever place, then return there) he listens to your explanation of why it won't happen right away. And telling him 'in a bit' doesn't trigger a meltdown like it does with many kids I've met.

But to hear the program coordinators talk, he's badly off and getting worse. They base this mainly on how he acts at the end of the program, once he's tired and overloaded. He slams doors, slaps people, and flicks the lights on and off. Which isn't so bad, really. I've worked with a kid who, at the slightest delay in the action, would scream like a peacock and hit herself repeatedly in the head. I worked with a boy who, though he was a sweet boy most of the time, would scream and sit down and refuse to move, and pull your hair if you crowded him at all. Not that I found either of those kids particularly difficult, and both had their good moments as well. One big difference between those kids and this boy - when those kids were having meltdowns, there was no reasoning with them at all. This boy readily goes to time out if told (he actually seems to like time out, because it reduces stimulation).

They also seem to have a poor opinion of his parents. His sister is also in the program, and I've worked with her twice. She's diagnosed as high functioning autistic, but the program leaders think she's not really autistic, just reacting to her brother (I'm not sure myself, but she is a quirky kid). And I've heard them talk about how badly-behaved both children are at home, where they claim there is no discipline at all. I have no idea if this is true, but judging from the track record, I'm skeptical about anything the program coordinators say about this family.

I'm worried about this kid. I'm worried they'll decide this program isn't working for him, even though he's really doing just fine. I'm worried that poor expectations will bring worse behavior from him. I'm also worried because none of the volunteers seem to like working with him, and I'm worried he'll become the 'hot potato' kid.

Tuesday, July 12, 2011

Perception and Grief

It's said in social psychology that if you want to understand a person, their perception matters more than reality.

Unfortunately, this has not been analyzed much in grief literature. You don't need to have experienced an objective loss to feel grief. All you need is to perceive yourself to have lost something. A good example would be the parent of a child with Down Syndrome, diagnosed at birth. Most such parents feel grief, even though objectively, they have not lost anything - right from conception, their child had Down Syndrome! But they expected and hoped for a non-disabled child, and are reacting to the loss of their dreams for this child. This will also be more or less devastating depending on their view of Down Syndrome and their personal values. For example, an academically oriented parent who places a high value on intelligence will be more upset about having a cognitively disabled child.

A clear example of this is in the book Mother Father Deaf, a qualitative study of hearing people raised by Deaf parents. They quote a Deaf woman describing how she realized her new baby could hear, and how she was horrified and grief-stricken by that realization. Most people would think deafness, not hearing, would be something to grieve in a child. But she perceived Deaf culture as very important to her values, and believed that a Deaf of Deaf child would fit into Deaf culture while a hearing child would be caught between two worlds.

Another example is when a child comes out as gay. Some people are accepting of gays, some are not. And if you read vignettes by parents of gays, a clear difference emerges in grief reactions.

"When I first learned of my son’s involvement in homosexuality, I cringed in disbelief, fear, guilt and shame. Stunned, I retreated from the world in deep confusion and great sorrow. Who could I tell? Who could possibly understand? My son, my only living child! Who understood the overwhelming and excruciating pain caused by my terror for his life?  There were days and weeks when the world went on without me being aware of everyday events. Once in a while, I would become half-aware of conversations and circumstances around me. I wanted to scream, “Who cares? Can’t you see how trivial this is to me? Can’t you feel my pain? Help me–or get out of my sight!”"
A Different Kind of Death, posted on the Exodus International website

"It has been eighteen years since I found out about my son’s homosexuality. Sometimes when I share this with other parents who have just discovered their child’s same-sex struggle, I see the look of panic in their eyes. Some have even expressed, “I can’t make it that long!” I testify that yes, you can make it with the help of the Lord. I didn’t start out on this journey emotionally healthy and certainly not very dependent on Him. Within two years of his “coming out,” I went from initially telling my son that he would not be in this lifestyle and live with us to going to gay bars with him and his partners, supporting his lifestyle. Then I went from trying to ‘fix’ him on to laying him down at the feet of Jesus and that I have had to do more than once. When I stopped trying to dull the pain with alcohol, I began to feel every emotion that accompanies this trial. The Lord has never abandoned me there."

Depths of Despair to a Posture of Praise, posted on the Exodus International website

"At first there was a typical response. I squalled about AIDS and not having grandbabies. I cried those crocodile tears that he had cried in the mall when he looked up at me discovering there was no Santa. Thirty minutes later, before we got home, we hugged, and until this day I can't imagine Benjamin not being gay."
"I have something to tell you.", posted on the PFLAG website

"I started going to PFLAG, not because I had any issues or needed to deal with anything, but in the hopes that I can convince other parents that just because their child is gay does not make them any different than they were before they knew they were gay. Your child will always be your child and you need to remember that you are a parent no matter what. A parent should always have unconditional love for their child and should always be there for them."
"Your child will always be your child." posted on the PFLAG website

The difference is clear. Members of PFLAG, who share a belief that gay people should be accepted as part of human diversity, range from transient grief reactions to no grief at all about their child coming out. Members of Exodus International, who believe that homosexuality is something to be cured, have enduring, overwhelming grief. And though their grief lessens with time, there is a note of sadness to them even years later.

When reading the Exodus International parent stories, I was struck by how much they sound like parents of disabled kids. And I think the same basic process is going on. Parents find out that their child is not the kind of child they hoped for, but instead has some characteristics that their value system does not find acceptable. The tone is different, of course - I have yet to meet anyone who thinks being disabled is a sin - but the sadness is the same.

"Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. "Yup, it's Autism, and it's never going to go away." I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist's office. It's one thing to harbour nagging suspicions; it's quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong."
My Son, posted on the Canadian Hyperlexia Association website

Researchers talk about a phenomenon known as 'chronic sorrow'. Basically, instead of a gradual resolution of grief leading to acceptance, some people experience a cyclical form of grief, which resurges at various trigger points or when the person is under stress. It's felt to be a common reaction to having a disabled child. And they theorize that it is due to the grief-causing event being an ongoing thing rather than a one-time loss - rather than just grieving your child and moving on, you deal with the disability every day.

I think that's only one piece of it. The contrast between PFLAG parents and Exodus International parents looks to me like a contrast between resolved grief/no grief and chronic sorrow. I suspect that chronic sorrow also depends on an unchanging belief system that views the situation as worthy of grief. Even if the situation continues, a change in beliefs (this study found a trend for homophobic attitudes to decrease over time in parents of gay people) can lead to a resolution of grief.

And this provides a more hopeful outlook, I think. Chronic sorrow isn't inevitable if you have a disabled child. If you learn a different way of looking at disability, you may find you have nothing to grieve for anymore.