Danang Sailor
nullius in verba
More than one person has asked for details of my son Aaron’s complex of neurological problems. Some of these have been
addressed in previous posts, but there was never a comprehensive “laundry list” posted. This will give everyone
interested that list, as well as a short history of our efforts to get him (and ourselves) the help needed. Please feel free to
ignore this post if you have no interest; it is surely not going to be exciting reading!
Aaron was born late in 1979, and was in some ways a miracle baby. We had been trying for a child for over six years, with
no results. Testing indicated that we both had minor problems that, combined, could account for our failure to conceive. In
one of the ultimate ironies, we did a special test which “proved conclusively” that we would never have children;
due to the nature of the test, we know beyond question that was in fact the day that Aaron was conceived!
Because he was a footling breach delivery was by C-Section. He amazed us by being well ahead of the norm on all the
benchmarks. Things were great … until he hit the two-year mark. What started then was definitely not just a case of the
Terrible Twos; we were new parents, but it was clear this was much different. Trips to the nearby military medical centers
(including Bethesda) made things worse, as no two docs could agree on what our problems were; not one was willing to even
consider the idea that there could be a problem with the child. We were told, by various doctors, in this order:
Eventually we found a doctor at KU Medical Center that was willing to take a very detailed history; this lead (eventually) to
a diagnosis of Asperger’s Syndrome, along with a laundry list of things that tend to fall under the umbrella of this diagnosis.
We found a psychologist who was one of the few working on the cutting edge of brain-mapping and neuro-feedback (yes, a
nationally recognized psych, in Kansas – miracles do happen!) and things started getting better.
That was twenty years ago, and life has not been dull; it has been many things, but never dull! We are Aaron’s guardians,
and will be until we can no longer do that job; at that point, his younger brother will take up the yoke.
Looking back at this, there is so much that has been left out, but most of it no one else really wants to hear. For instance,
the time he spent in a residential treatment facility in Texas (two separate times totaling 18 months), which required us to
drive from Topeka to San Antonio every three weeks for family sessions. A lot more that need not be set down here.
Behaviors over the years:
Asperger’s Syndrome (an umbrella for the following)
so it will be up at Oh-Dark-Thirty in the morning. Thanks for bearing with me through this. It hasn’t all been gloom and \
doom; there have been many good times over the years but there is no denying that dealing with him as worn us down a
bit. Oh, because one person asked about this, and as long as I’ve run on this far …
Things we have done in the MR/DD arena, not directly tied to our son:
multiple PM’s – guess I’m just lazy.
addressed in previous posts, but there was never a comprehensive “laundry list” posted. This will give everyone
interested that list, as well as a short history of our efforts to get him (and ourselves) the help needed. Please feel free to
ignore this post if you have no interest; it is surely not going to be exciting reading!
Aaron was born late in 1979, and was in some ways a miracle baby. We had been trying for a child for over six years, with
no results. Testing indicated that we both had minor problems that, combined, could account for our failure to conceive. In
one of the ultimate ironies, we did a special test which “proved conclusively” that we would never have children;
due to the nature of the test, we know beyond question that was in fact the day that Aaron was conceived!
Because he was a footling breach delivery was by C-Section. He amazed us by being well ahead of the norm on all the
benchmarks. Things were great … until he hit the two-year mark. What started then was definitely not just a case of the
Terrible Twos; we were new parents, but it was clear this was much different. Trips to the nearby military medical centers
(including Bethesda) made things worse, as no two docs could agree on what our problems were; not one was willing to even
consider the idea that there could be a problem with the child. We were told, by various doctors, in this order:
We were inexperienced parents and just didn’t understand this was normal
He needed more structure
He needed less structure, more freedom
We needed to use time-out when there were problems
Time-out wasn’t effective for such a young child
Because of his intelligence we needed to use verbal discipline
Because of his age we needed to use physical discipline
Behind all this was the assumption, sometimes rather brutally delivered, that we, and especially Dragonfly Lady, were bad parents.
Fast forward: Ten years and a transfer to Kansas passed, and the general medical consensus was: we were bad parents.He needed more structure
He needed less structure, more freedom
We needed to use time-out when there were problems
Time-out wasn’t effective for such a young child
Because of his intelligence we needed to use verbal discipline
Because of his age we needed to use physical discipline
Behind all this was the assumption, sometimes rather brutally delivered, that we, and especially Dragonfly Lady, were bad parents.
Eventually we found a doctor at KU Medical Center that was willing to take a very detailed history; this lead (eventually) to
a diagnosis of Asperger’s Syndrome, along with a laundry list of things that tend to fall under the umbrella of this diagnosis.
We found a psychologist who was one of the few working on the cutting edge of brain-mapping and neuro-feedback (yes, a
nationally recognized psych, in Kansas – miracles do happen!) and things started getting better.
That was twenty years ago, and life has not been dull; it has been many things, but never dull! We are Aaron’s guardians,
and will be until we can no longer do that job; at that point, his younger brother will take up the yoke.
Looking back at this, there is so much that has been left out, but most of it no one else really wants to hear. For instance,
the time he spent in a residential treatment facility in Texas (two separate times totaling 18 months), which required us to
drive from Topeka to San Antonio every three weeks for family sessions. A lot more that need not be set down here.
Behaviors over the years:
Broke Mom’s nose six times
Tried to kill younger brother, twice (this is real, not hyperbole)
Physically assaulted all family members, including grandmother and aunt, frequently
Stole from all family members frequently
Lied to anyone and everyone, about anything and everything (pathological behavior)
Refused to accept discipline in any form
Soiled himself daily, often multiple times, and would try to deny that he was the one who did
Utterly refused to do anything except what he wanted at the moment
Cut himself as well as furniture, doors, and walls whenever he could get his hands on a knife or razor
Played with fire, in one instance nearly setting fire to the house
Diagnoses:Tried to kill younger brother, twice (this is real, not hyperbole)
Physically assaulted all family members, including grandmother and aunt, frequently
Stole from all family members frequently
Lied to anyone and everyone, about anything and everything (pathological behavior)
Refused to accept discipline in any form
Soiled himself daily, often multiple times, and would try to deny that he was the one who did
Utterly refused to do anything except what he wanted at the moment
Cut himself as well as furniture, doors, and walls whenever he could get his hands on a knife or razor
Played with fire, in one instance nearly setting fire to the house
Asperger’s Syndrome (an umbrella for the following)
Tourette’s Syndrome
Developmental Delay – he is 32 years old by the calendar, but emotionally not more than 14 – on a good day
Oppositional/Defiant Disorder
Bi-polar Type II
Psychosis – quite mild and (generally) controlled by medication
Attention Deficit Disorder with Hyperactivity
Partial Complex Frontal Lobe Seizure Disorder
Vasovagal Syncope
I probably missed something in that list; it’s been a long day and tomorrow we do more doctor appointments, out of town,Developmental Delay – he is 32 years old by the calendar, but emotionally not more than 14 – on a good day
Oppositional/Defiant Disorder
Bi-polar Type II
Psychosis – quite mild and (generally) controlled by medication
Attention Deficit Disorder with Hyperactivity
Partial Complex Frontal Lobe Seizure Disorder
Vasovagal Syncope
so it will be up at Oh-Dark-Thirty in the morning. Thanks for bearing with me through this. It hasn’t all been gloom and \
doom; there have been many good times over the years but there is no denying that dealing with him as worn us down a
bit. Oh, because one person asked about this, and as long as I’ve run on this far …
Things we have done in the MR/DD arena, not directly tied to our son:
Ran a support group for parents with developmentally delayed children
Practicum instructors for Washburn University’s Respite Care Provider training program
Member of the Washburn University Continuing Education Advisory Board
Member of the Children’s and Adolescent’s Subcommittee of the Kansas Governor’s Mental Health Reform Task Force
Member of the Governor’s Committee on Community Mental Health Center Licensing Standards
Editor and staff writer for the Kansas Respite Care Training Manual
Participants in a training video for family support workers
Invited participants in the first National MR/DD Respite Care Conference
If this has been a total bore to read, I’m sorry. Enough people have asked for this info that I decided to do a single post vsPracticum instructors for Washburn University’s Respite Care Provider training program
Member of the Washburn University Continuing Education Advisory Board
Member of the Children’s and Adolescent’s Subcommittee of the Kansas Governor’s Mental Health Reform Task Force
Member of the Governor’s Committee on Community Mental Health Center Licensing Standards
Editor and staff writer for the Kansas Respite Care Training Manual
Participants in a training video for family support workers
Invited participants in the first National MR/DD Respite Care Conference
multiple PM’s – guess I’m just lazy.