Tuesday, April 27, 2010

Rosie O'Donnell on Why Her Son Just Can't Listen Up

Rosie O'Donnell at a tailgate party before Bar...Image via Wikipedia
"Parents and teachers often tell children to pay attention — to be a “good listener.” But what if your child’s brain doesn’t know how to listen?

That’s the challenge for children with auditory processing disorder, a poorly understood syndrome that interferes with the brain’s ability to recognize and interpret sounds. It’s been estimated that 2 to 5 percent of children have the disorder, said Gail D. Chermak, an expert on speech and hearing sciences at Washington State University, and it’s likely that many cases have gone undiagnosed or misdiagnosed.

The symptoms of A.P.D. — trouble paying attention and following directions, low academic performance, behavior problems and poor reading and vocabulary — are often mistaken for attention problems or even autism.

But now the disorder is getting some overdue attention, thanks in part to the talk-show host Rosie O’Donnell and her 10-year-old son, Blake, who has A.P.D.

Little-Known Disorder Can Take a Toll on Learning - Well Blog - NYTimes.com

Not everybody who doesn’t pay attention is disrespecting you. Sometimes this failing is due to an illness like Central Auditory Processing Disorder.

When I was a child, I got yelled at for not paying attention or not following instructions, that I honestly did not hear. I think people generally assumed that I was a bit day dreamy or out to lunch.  Sometimes people have said that I was lying about things that I insisted that I had never been informed when it was quite clear in their minds that they had, indeed, told me.  I’ve also had problems keeping to the beat while playing a musical instrument or dancing rhythmically to music.

These problems do not go away. As an Adult, I have problems in groups, because I can’t process what the whole group is saying. Instead, I focus on the speaker and the conversation reverts from group discussion to a one-on-one with me and one person. At best, I flit my attention from one person to the next; but, I don’t process in real time. Or, sometimes, when people are talking quickly back and forth and I want to break into a conversation, I can’t get in fast enough and the topic of conversation has moved on; or, I break in by interrupting since I can’t interject at an appropriate moment; or, I am thinking quickly and I don’t sync my thoughts to the conversation flow, so I jump in at the wrong time. Since so much work is now “team” oriented, not working well in groups in problematic. When people have given rapid, verbal instructions, I have ended up calling them back to verify what was said. People are not always accommodating to repeating what they have just said (“I JUST TOLD YOU....!!!).

I’ve tended to compensate for this by note taking, listening with my whole body (tapping my fingers when I am trying to remember a list), watching body language, or by asking people to repeat themselves. But, these tactics, by themselves, are a bit exhausting. Try to do advanced calculus in your brain for 40 hours each week and you will find that it is not always sustainable. To make a complex subject easy, Auditory Processing is done in the back of the brain; Executive Function, which includes things like organization and time management is done in the front of the brain. When the front of the brain is consciously trying to compensate for not hearing properly (done in the back of the brain), a number of executive functions get crowded out. So the purpose of my therapy has been to get the back of the brain working properly.

I am in the middle of therapy and my hearing has greatly improved: my husband is no longer hollering at me (“I TOLD YOU... .or, DIDN’T YOU HEAR ME??” for which he is very grateful), I can hear the lyrics to songs much clearer. I can’t tell you what this means to me. I started crying when I finally heard the lyrics to Billy Joel’s “In the Middle of the Night”. I can now sing on key. For years, I made up with gusto what I lacked in talent. I was doing the dishes and started to sing “I Dreamed A Dream” and then realized that I was singing on key. When I fell off key, I could get myself back on. I just stopped and literally fell to the earth and held myself as I bawled my eyes out. I have always loved singing and had just resigned myself to be someone who made hideous noises. It is such a joy to be able to make music. Now, there is a big gap between Susan Boyle and myself and I probably will never be able to perform; but I can, at least, enjoy the sound I make.

Proper Hearing has so many implications for proper social life, career, and organization. There is a eed for:
  • Better Screening - my problems were not picked up by the standard hearing tests done in school. Teachers are not trained to screen for these problems. I attended a very elite prep school where I lived with my teachers and no one understood I had a problem.
  • CAPD is often misdiagnosed with ADHD, Autism and other problems.
  • CAPD in the gifted and talented is often confused with behavioral or learning problems.
  • Access to Proper Childhood Remediation - this is all to often a function of school funding and inequities in our educational system. Before I went to prep school, I went to school in the foothills of Appalachia. I can not imagine that school system being able to furnish the type of remediation I have had access to as an adult.
  • Adult Remediation - Because CAPD is lumped in with learning disabilities, people focus on children and the interventions for adults are lacking in the workplace. You are on your own. CAPD doesn’t go away when you hit 18. Structures like IEP’s are lacking in the workplace for CAPD. I know there are IWP (Individual Work Programs) for folks with disabilities but outside of Fortune 500 companies or sheltered workplaces set up for the disabled, I can’t imagine that an average Human Resource Manager has ever heard of them, much less deployed them. There is a lack of funding for IWP or job coaching for the disabled. Job Coaching for the disabled is not cheap. It runs about $500/month privately. Don’t get me started on using the state resources such as the Office of Vocational Rehabilitation. They are truly set up for a severely disabled person who doesn’t make much money. Even though therapy to remediate this condition runs into the 10’s of thousands of dollars, you are on your own paying for this. If you aren’t severely disabled, but you still have major problems that impact your ability to work, the state is just not there for you. The only upside, is that autistic children many of whom have a lot of sensory integration problems (including auditory) are aging out of the child-oriented systems.
Finally, I wish to address the Misdiagnosis/Overdiagnosis themes that occur in the article. The posters are again trying to cast learning disability problems as character flaws. Reading between the lines, I can see:  "If only the parents were stricter, the child would be better behaved." Or, the ever popular,  "Just Suck it up and Stop running to the doctor". Just because you can’t function like everyone else, doesn’t mean that you don’t want to or aren’t moving heaven and earth to do so. Disabilities like CAPD, or other Sensory Integration Disorders are invisible disabilities. It is just as cruel to tell people to suck it up and function just like every one else as it would be to place a blind man in front of a Picasso and tell him to copy the picture.

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