Enough… is enough!

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

ADHD

OCD

If you made it this far I will leave you with my favorite dialogue between Miss Anna and the Zor.

“Miss Anna”

“Yes”

“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!”

It’s good to be the Zor!

Until this post I have been stating the negative or trying aspects of the Zor’s PDD.  There are many benefits, though on any given day they may not necessarily balance out against the energy expenditure; though as she gets older we hit the equilibrium a lot more often!

The Zor lacks social awareness so therefore, is not afraid in public to be friendly or interact. This in essence means she struts around like she owns the joint.  This is not lost on those of us that have our social awareness in check.  Due to this Zor is great at initial meetings or parties, the public pool, things of this sort.  Nearly zero trepidation.  As she is likely to ask a random adult at the pool why they are there… as she does not understand that they could be there for the same reasons she is.  This begins conversation and to the untrained eye, the Zor just seems outgoing.  This helps with some of her more obvious spoken honesty’s like “you are old”, “oooooo…you are red (sun burnt)”, “Daddy what happened to him” as the ground work is already broken.  Most people take these comments well as the Zor is cute and young enough it does not have much weight.  This also makes the Zor the center of attention as she will hug and ask all the other adults all kinds of questions. The Zor has always been at ease with those much older than herself.  Prior to her diagnosis we used to joke “that she is 7 going on 21″.  All her difficulties in the age appropriate interactions are forgotten when she’s amongst adults.

In addition this lack of trepidation carries over into other topics like learning to swim, or water ski, or ride a bike.  The Zor lacks sensible fear… which in a lot of ways is a good thing.  She learned to ride a bike in 5 min.  If I throw her in the pool she can almost do a full twisting 1 and a half which is difficult to do off a 1 meter diving board,  cause she lacks fear she “just does it”.  The one minor problem to this is the consequence when something bad happens.  Like riding her bike down the biggest hill next to our home with all the neighbor kids, the 4th time she was on the bike… She crashed and that was it she was done riding… for a while.  Her danger sense or lack there of is intertwined or the same as the sense that she cannot predict or discern a punishable outcome.  I will discuss this many times throughout future posts.  This lack enables the Zor to experience many things that you and I have to talk ourselves into.  We celebrated the Zor’s 4th birthday at Disneyland.  We went on all the rides… What do you think was the Zor’s favorite?… Big Thunder Mountain. She like Space Mountain and the Matterhorn too, though technically she was too short for any of them according to the sign! We went on Big Thunder Mountain like 2 dozen times in a row… and she wanted to be in the last car! Grandma pleaded… lets go see the princess, or lets ride the Nemo ride… “Grandma your riding with me… right?” to which grandma would say “can’t daddy?” “No grandma it’s my birthday, and you said you would ride with me.”  The Zor loves coasters!

The Zor is happy most of the time even when driving you crazy! She is generally a happy kid!

While her condition makes her rearing a challenge, it simultaneously makes her more endearing!

 

Early Home Life!

The Zor’s early home life was infinitely more complex. Her interactions with family members was very love/hate! Run to them for a hug run away from them cause they said something negative… like Zor stop… you hugged me 10 times already… you are not a baby anymore… then she would hold a grudge… sometimes for days. Very willful in her intent.

The baby resentment in some ways is still present.  If the Zor could will it she would be an infant indefinitely.  She seldom is exited about the prospect of growing up.  From the age of 1-4 she would ask “do I have to grow up?” “When I grow up can I live with you?” Some kids may ask similar questions but you could tell the Zor’s questions had an urgency to them… for three years.  She will continue to talk in baby talk if she is under stress or super excited, it sends my wife through the roof as she is almost 8! We are working on that one!

As previously stated or eluded I am or have been the disciplinarian a majority of the Zor’s life. This has been one of the most difficult aspects of my wife and I’s marriage.  We do not fight over much but if we are having a fight it usually has revolved around the Zor.  To the parents that have been or are about to deal with this complex rearing style compromise and support one another.  If I have nearly unlimited patience, my wife has a very limited supply.  My wife would agree and tells me all the time she is lucky she found me cause she cannot do as I do.  However once my patience is used up, its gone and you will get a pretty raw quick response.  Do not deceive yourself an autism spectrum child will try you to the nth degree!  In the opposite direction I lack empathy or feeling due to action contrary to that desired.  In this respect my wife compensates for me, and the Zor and I are fortunate to have her.  The two extreme balance each other out, but it makes me the “Bad Guy” all the time and my wife the defender of the Zor.  When it comes to disciplining a autism spectrum child I will say I have tried EVERYTHING legal. Use what works as long as it works.  The Zor can be immune to pretty much anything on a whim, and if you try to get through to her the most hellish tantrum may be unleashed upon thee. You may have to swallow your pride and just let it go, cause trust me its not worth the aftermath… a few hours later.

This dynamic has led to an odd perception by the Zor, as she will interact with my wife in whatever way she chooses. Very disrespectful at times, then mom is better than sliced bread.  Me on the other hand is always respected lovingly never adored but never disrespected either.  I am the sole proprietor of this particular niche.  Grandma, Papa, Mom, teachers, sisters, etc. can correct the Zor to varying degree but to “call Dad” is serious… most of the time (see last sentence in above paragraph).  Many of the same behaviors that were exhibited in daycare carried over to the home, with quite a few others.  To try and have the Zor sit and eat was impossible, she just now is managing this well… its only been seven years.

Sleeping was/is an ongoing fight.  Driving her around used to work.  I attempted the “She’s fed, she has a clean diaper, she will cry herself to sleep”. Tantrum begins, one hour passes, the Zor turns it up a notch, “she can’t keep that up” another hours passes, the Zor turns it up a notch “Wow, she has to running out of steam, cry’s of desperation”, my wife has to leave the house cause she can’t take it. “Trust me I say, she can’t keep going”, another hour goes by the Zor turns it up a notch… We open the door to her room.  The Zor is naked her diaper removed, her clothes on the floor, the crib pushed into the middle of the room she has broken the latch that drops that side of the cradle.  Her entire body is red and she is screaming “mommy, mommy, mommy I don’t want to go to bed” at the top of her lungs”.  The Zor is almost two. This was attempted on one other occasion with similar results.  The Zor cannot be put to sleep like other kids.  For the Zor “bedtime” is the most tentative time for my wife and I as this has been the trigger for her worst tantrum episodes.  She has rituals that must be observed in a certain rotation of  ” I need to go to the bathroom, I need a drink of water, I need a hug, tuck me in, I want this light on, that light off, I didn’t feel your hug, can you read me a story, can I call grandma, can I wait until mom gets home, I need a drink, I need to go the the bathroom…” Just because she is in bed does not mean she is asleep. We have come into her room 3-4 hrs after she has gone to bed and heard “do I have to go to sleep”.  The rules for the Zor are in bed by 9pm, be quite, don’t get out of bed! We don’t try to get her to sleep.

Its not all bad and trying! The Zor is crazy fun in her own unique way, and that will be the focus of the next post!

In the Begining…

The Zor was like any other toddler at the age of one. Though she had trouble sleeping, my then girlfriend, now wife and I spent our evenings driving the Zor around in the car at 11pm to get her to go to sleep.  This was the only way to get her to go to bed.  We would discuss how she just seemed to not want to miss anything.

Skipping ahead six months at a year and a half in age the Zor started to have major temper tantrums that would last for hours there was no end if there was not some interaction.  This was an issue between my wife and I.  I would get frustrated when she would give in and give the Zor what she wanted, which did stop or decrease the tantrum.  I was raised in a strict discipline home and as such am pretty rigid myself, I have the patience and toleration to wait out a tantrum. The Zor has proven time and again that she is a nuclear powered energizer bunny when it comes to tantrums, I have never waited one out… Unbelievable a couple hours in she could dial up the tantrum, it was obvious that this was not normal behavior.   She has had tantrums that broke welds on steel frame beds… I understand how someone could believe their child was possessed.  A normal child will usually wear themselves out  after 20min. or so and nod off, not the Zor.

In addition to her tantrums she also started to display repetitive behaviors that she does to this day, especially when stressed.  She rubs her thumbnail on her upper lip. While this may seem insignificant it is a tick of a sort.  She does not move her hand bank and forth rather she moves her head as if nodding “no”.

The Zor’s daycare issues also escalated in addition to her tantrums which were usually triggered by “nap time”.  She began to be mean to other kids for not liking her, she would hit, kick, or bite other kids.  The daycare provider managed to dislocate the Zor’s left elbow during one of her nap time tantrums trying to subdue her…  Shortly after this incident the Zor was moved to another daycare facility.  Having gone the route of home daycare facility with poor result we thought lets try an institutional style daycare.  Maybe more teachers and kids would help her… Boy were we wrong!  We expressed our concerns, the Zor’s poor behaviors and the daycare facility assured us that they would aid us in trying to curb some of these issues.  Many significant things were learned from this experience.

First and foremost the Zor can and will manipulate adults! As her current principal told us  “…she could move mountains if she willed it”.  Although the Zor lacks the ability to recognize social ques, body language, and voice inflection.  She does possess the ability to recognize “genuiness” in people.  If you are fake, your are weak willed and she will own you! Do not underestimate the powers of the darkside.   Many a daycare provider has fallen victim to the Zor.  The Zor is a beautiful girl and that is trick number one.  Trick number two is because of them “liking” her for her beauty she allows them to get close and they intern allow leniency, once this happens your are toast.  There is no Recovery! Step number three have a tantrum and see how it plays out… If they give in quick they are doubly doomed.  This is how it went with teacher number one at daycare two.  Shortly after this the teacher realizes she is helpless and requests the Zor be moved to another class, just so she can get some relief.  This is what I refer to as people washing their hands of my daughter, this pisses me off!  Not just because they no longer have the energy to deal with my daughter, but that I warned them it would happen! This process happened with each subsequent teacher, 8 in total at this daycare; to the point the Zor was spending daycare with the facility principal.

Observation number two… The Zor does not nap, EVER! To this day I don’t believe she has taken a nap. We drove from California to North Carolina and she did not nod off in the vehicle once.  Getting her to go to bed in a hotel room was just as bad.  The Zor’s sleeping issues will be discussed at length later.  Tantrums escalated at the daycare during nap times as all the teachers had given into the will of the Zor.  The Zor was successful in keeping all the other children up as well.  My wife and I by this time had had many parent teacher conferences with everyone at the daycare.  We were asked by the Principal if one of us could come and get the Zor at nap times. I modified my work and lunch schedule as my wife could not and for the next few months I got the Zor from daycare and we spent her nap time at home playing.  This actually reduced her tantrums for a period of time.

Observation number three… The Zor does not play or interact with kids in an age appropriate manner and she is starting to speak with a vocabulary and sentence structure greater than her age, in addition she memorizes songs and phone number after only hearing them one time.  She is concerned that she is disliked and does not have any friends but she does not know how to be friendly.  Zor “why did you hit, bite, push, hit with object, so and so?” to which Zor replies “I don’t know, my brain tells me to do things, I cannot control it all day… My brain exhausts me” She is almost 3 years old.

After 6 months we get the call from the Principal requesting that we find another daycare provider.  I spoke with the principal and frankly stated that for all the promises and with all information we provided and my sacrificing my lunch breaks and weeks ends to volunteer to repair the facility grounds, that I am extremely disappointed.  The Zor burned through 8 former teachers turned daycare providers in six months.  Not one of the mentioned that she may have a developmental disorder.

We searched and asked around and we found a home daycare that specialized in “difficult” children.  My daughter still requests to stop by and visit when ever we pass the street that she lives down.  She remembers the street and house to this day.  Ruth was a god send.  She was genuine, she listened and heeded my advise, the Zor could not manipulate her, did not have to take naps, and had fewer interactions to handle.  Sarah remained at this day care until we had to move. Unfortunately to another facility type as we had no options.  That lasted a few months, with the same result as the former daycare facility.  With one exception the owner of the day care whose home was right next door to the facility took the Zor when it was nap time… She does not take naps!

This has been repeated to varying degree until the Zor started school the only two successful daycare’s to whom we owe much thanks are Ruth and Mrs. Amanda.

The home front is another experience all together! As my wife says “The Zor is best experienced briefly”.

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