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My Son's Problems - Our Lives

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:
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.
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
U
tterly 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:
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,
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 vs
multiple PM’s – guess I’m just lazy.

 
DS, i knew Aaron had problems, but figured you would let us know what you wanted us to have. Thanks for the info. May the great spirit bless both you and your wife. From my experiences with an autistic neighbor I know that raising a child with such problems can be very difficult. Hang onto the joy he gives and try not to dwell on the pain.
Both you and your wife have to be very special people to do the job that you do. You have my respect.
 
As someone with neurological problems of my own I can sympathize. The brain is kind of the final frontier. I believe that much of the time that the neurologists are mostly guessing.
 
I cannot find words to tell you how much I respect you and your wife And your sons for your journey. I don't know that I'm enough of a person to have dealt the way it sounds like your family has dealt. In the interest of being open and honest, I have bi-polar type II. The only person I've ever tried to harm is myself. I'm on effective medication and therapy. It is just part of who I am. All my best to you and yours'
 
Danang,

As a friend of mine who has a son who has many health issues, and my wife who has severe migrains, no one goes through life unscathed....

Some of the people we think we know, we know nothing of....their personal lives and toils with health, family, and childern.

For some the best way to deal with it is to share it with others, and especially friends. Some how this can lift a bit of the burden of living with the personal pain of coping with the situation. Thanks for sharing this, and I hope in some small way it helps you and your wife.....

Best regards, Kirk
 
I grew up with a brother (the second of five boys) with cerebral palsy, who lived to be 65 when he passed away two years ago. Mentally, he was like a 12 month old child. Growing up with him, my brothers and me shared in the daily care of feeding him, dressing him, moving him around the house (he could not walk and was paralyzed on one side), and even changing and cleaning up adult diapers. I gained a sensitivity for the mentally challenged, and share a camaraderie with their caregivers. Everything we did as a family was done around Tommy, and planned so that he could be part of it. Vacations were non existent until our eldest brother was able to care for him, and our first vacation was when I was 15 years old.

Doctors back then were useless, and we got the same inconsistent advice from them all. Tommy's pediatrician said we should not get too attached to him, as he probably would not live past age 12. He was institutionalized for some time, but our mother took him home when she went to visit him and found him shackled to the bed because he would sit up in bed if he woke during the night.

We never questioned that he was part of the family and his care was the job of the entire family. To this day I pray for all who care for those who cannot care for themselves, and I have a low tolerance for ignorant people who use words like retard. Your life is a daily challenge, but it's also rewarding in that you are doing what very few other people would do. God has a special reward for caregivers of His special people.
 
Thank the Lord we now have a better understanding of Asperger's Syndrome. I'm sure you remember in our day, DS, that a child these issues was simply labeled a brat and given all manner of "extra discipline", often leading to a tragic outcome.

Our thoughts are with you and your family.
 
Bless your heart and your wife.. For being there and staying the course. So many folks would give up and the person in need of help would be in government care..
 
Bless your heart and your wife.. For being there and staying the course. So many folks would give up and the person in need of help would be in government care..

Thanks. It's still difficult, but we go day by day and hope for the best; occasionally, we get it.

 
Dealing with special needs kids and adults is tough job. Hard on family at times. Stay the course DS.
 
My daughter has a brain injury due to brain cancer and the radiation to treat it when she was 17. She is now 46 and functions at the 10 year old level on a good day. She has memory problems along with cognitive and organizational problems. She lives with us and goes to adult day care. She does not have nearly the problems that your son has DS, but it still is very wearing. I'm surprised that you had the time to join all the organizations and to do all that you have.
 
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The patience, dedication and love shown by the parents of special needs children goes a long way to restoring my faith in people. Thank you for being you.
 
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