The Zor went undiagnosed for 7.5 years; if your read any books on autism, aspergers, PDD, and/or turrets this is not uncommon, especially in high functioning aspects of these disorders. Some children are diagnosed early and some never get diagnosed!
To0 complicate matters further as parents we may be too close to the problem, as we observe family daily. If someone were to lose 20 pounds over 4 months the transition is not drastic. Now if this same person were to have seen an acquaintance 4 months ago and ran into them today the transition would be drastic. In much the same way, as our children develop we may miss certain significant changes as they evolve.
While the Zor obviously was not “normal” compared to other kids, she functioned well enough that we thought it was something she would just grow out of. Too compound matters my wife and brother in law both are diagnosed ADHD. So we assumed the Zor just had a more severe case of ADHD. My wife not being a big fan of medications (which will be covered in another post) did not want to put her on Meds until it was necessary, like in a school environment.
Having done well in Kindergarten the Zor went on to the first grade with all the teachers being forewarned on how to deal with her and her eccentricities. There were a couple of compounding factors that further muddied her eventual diagnosis. First the kindergarten she attended in a different state had a different standard and curriculum for moving on to the first grade (not going into the no child left behind crap). As such the Zor floundered for the first half of her 1st grade semester. She then was put into a Kindergarten/1st grade combo class. While this on face value would seem to be a good “Catch up” class for children like the Zor; it ended up being a “Catch all” for children with all kinds of issues aside from 1st grade deficits. This concentrated pool of ADHD, Social Problem, and the Zor was anything but a good thing. The Zor began to feed off the negative energies, chaos, and lack of consistency and acted out very badly. These actions carried over into her daycare environment as well . Little did the on sight daycare realize that these kids were accustomed to a certain social interaction level prior to getting to day care.
My wife and I had enough… it was time to see about having the Zor diagnosed with ADHD and getting her medication, as we were confident that was all that it she had. I consider what happened next to be a mistake, but a necessary one as I don’t think we would have gotten further testing had it not happened. My wife got the Zor into see a pediatrician who asked the Zor some questions, asked my wife some questions, and boom ADHD diagnosis and Meds.
So begins the horror!!!!
Per suggestion we bought apple sauce cups to put the crushed Meds in as children at the age of 6 aren’t great at swallowing pills. First day at school, great reports, she did well, was focused, and overall acted more like a normal kid. Then the Meds started to wear off. She was really agitated, emotional, and would sit in place and do repetitive behaviors. Bed time already being difficult, the Zor was even more distraught about rituals and very argumentative. Eventually she went…
Day 2 same as day 1… UNTIL the Meds wore off all the negative consequences of of day 1 times Ten!!! The Zor had one of her worst tantrums ever only superseded by day 3 Meds wear off. I put her down at her 9pm bed time which is like law, and the Zor went into full meltdown, screaming, flailing, full exorcist style. This was kept up until mom got home at 11:30pm and it escalated again… I think I have mentioned the Zor’s ability to have exponential abilities in this department. Yelling and screaming ensued between the Zor, my wife and I! WE thought for sure the police were going to be called. It sounded like we were killing her as she screamed you guys hate me, you don’t want me, you hurt me all the time, you hurt my feelings, I am a bad kid, I can’t be good, WHY, WHY, WHY, No….NO….NO….. I don’t want to go to sleep!!!!!
The next day the Zor was fine like nothing happened. We asked her and she said nonchalantly “I don’t know, I did not want to go to bed”. Throughout her life some aspects of her disorder are cyclic. Tantrums are one of them, my wife and I assumed this was just one of those cycles. We had a long cycle of tantrums when we first moved to another state a few years earlier, so we thought this might be similar. We did not think Meds… Applesauce & pill off to school! Day three on Meds at school! We were told what ever we were doing the Zor was doing great!
Until… the Meds started to wear off! My wife observed the Zor sitting on her toilet with the lid down, writing the alphabet over and over on sheets of printing paper. She was getting angrier and angrier as the letters curved on the paper because she did not lift her arm while writing, and there were no lines. The Meds were increasing her attention to the point that her obsessive compulsive aspects which are anxiety driven were off the chart in everything she did. At this point we were thinking the Meds might not be right for the Zor… 5 hours later we WERE SURE! Day 3’s tantrum was twice as bad as Day 2’s. Again an escalation in emotional outburst and physical flailing. The Zor’s tantrums know no bounds! This night ended with my wife and I crying holding each other from the emotional outburst and energy expended trying to limit the Zor’s tantrum.
Day 4! Med Free! The Zor did not do so well in school. BUT, she was less compulsive and angry when she got home. She did fight the bed time a little more aggressive than was normal prior to Meds, but it was tolerable. The Zor also said that she did not like the Meds cause it made her “feel funny… like far away in my own body”.
My wife and I describe the Meds as capping a volcano for 8 hours, then jerking the cap off!
All of this led to a need to know more precisely how to help the Zor. My wife happening to work at Duke University at the time found the Child Development and Behavioral Health dept. (Special thanks to all practitioners, Especially Miss Anna). An apt. was given for some 4 months later, my wife and I concerned with the Zor’s academic performance knew we could not wait that long. My wife called and spoke with one of the practitioners, and explained all the Zor’s behaviors. We were sent a fill in the bubble evaluation and dropped it off. The Zors apt. was moved up to the following week as it was obvious that we weren’t just concerned parents, the Zor had a very real problem. We met with a senior Doctor and two residents. The primary evaluation form this meeting was to set up behavioral therapy which led us to Miss Anna! 3 long weeks later we had our first meeting with Miss Anna; she was thorough and asked question and met with the Zor privately. Miss Anna after the first sessions said that the Zor was very… complicated, and would need further evaluation but should continue to see her once a week.
A few weeks later we are sent evaluations to give her teachers, my wife and I also fill out the same questionnaires (in her diagnosis they graphed our responses which was cool to see how similar she scored given 4 different perspectives, aside from the practitioners). After these forms were evaluated we were told that the Zor needed an IQ, ADHA, OCD, Turrets, and Autism test battery which would take 6 hours in a single day, that would be done in a few weeks. Two Doctors performed this battery of testing while I read a novel in the waiting room, it took 4 hours. The results took 6 weeks and were not conclusive. My wife and I in the meantime really observed the Zor and read about behavioral disorders that met all her behaviors. Aspergers more than any other was the closest. Having all the other testing already done, and since Duke happens to have one of the foremost authorities in Aspergers working at Duke Child Development and Behavioral Health (http://pediatrics.duke.edu/divisions/chld-development-and-behavioral-health) we requested that she be tested for aspergers. A few weeks later the Zor was tested for 2 hours and the results were not conclusive, but she scored very high is all the aspergers columns save one, which was a similar outcome to the autism result testing high in all categories but one.
All of these doctors got together over the next 2 months (7 months since initial apt.) and discussed the Zor’s diagnosis. The significance of the categories are as follows: Aspergers and Autism both have 3 categories, a child must score a high percentage in each of the three to be diagnosed with either disorder. One column is shared between the two. As the Zor was 2/3’s aspergers and 2/3’s autism she fits the Pervasive Development Disorder (PDD) category. Her testing also yielded a huge discrepancy in the Zor’s ability to learn due to ADHD, as a result her IQ score was low average, but the doctors feel this is not accurate as they do not believe she could focus on answering the questions long enough to give a proper answer. Furthermore her toy interaction testing suggests that the Zor has mild OCD tendencies driven by high levels of anxiety. The anxiety is also a significant driver of her ADHD. Every doctor at Duke Child Development and Behavioral Health commented on how complex her diagnosis and behaviors are, and that most of them in their 20 years practicing have only seen 2 or 3 kids as complex as the Zor. So count yourselves lucky we got the GEM!
56 page diagnosis, in simple terms, in order of severity of impact on the Zor, her diagnosis is as follows:
PDD/ Greater Aspergers side of the autism spectrum.
Anxiety/ Driver for lesser diagnosis and almost as significant as the PDD
If you made it this far I will leave you with my favorite dialogue between Miss Anna and the Zor.
“How many kids do you see every week?”
“Quit a few, Why?”
“Since you see all those other kids I was wondering why you waste your time with me, I can’t be fixed!”