The Battle of the Century

I was reading one of my daily feeds the other day and I saw a review of a science book that involves the question of whether or not animals (and particularly chimpanzees) have theory of mind. You can read the review here. My immediate reaction was to say to Amy "seriously, if I find out that chimpanzees have theory of mind and Mowgli doesn't, I am going to be pissed." For those of you that read this blog, or have researched the topic, theory of mind is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires and intentions that are different from one's own. It is something that children with autism struggle with, and it is one of the great impediments to social/emotional development. Apparently it isn't out of the realm of possibility that chimpanzees have it in some rudimentary form. Really science? I need to be told that a chimpanzee has a step up on my son? So I got to thinking - in a head to head competition between Mowgli and chimpanzees, a best of seven battle royal, who would come out victorious?

[For those of you who personally struggle with theory of mind, or have absolutely no sense of humor, this post is intended to be a joke - it kills me that I have to write that, but there are a number of people out there who I know would take this seriously if I I didn't]

I. Theory of Mind: As stated above, apparently the chimp has it, and Mowgli doesn't. Chimp 1 - Mowgli 0

II. The Potty: Mowgli, though slow with his potty training, has made some progress over the past year, though regressions (like this week) are always right around the corner. For the most part, he goes number one on the potty. As for number two, he has figured out that he has to run into the bathroom and close the door, though he still utilizes the diaper for the actual event. Apparently, according to my research, one of the reasons that chimps make lousy house pets (thank you internet for a number of articles on this subject) is that they can't be potty trained. Additionally, they like to play with and sometimes eat their poo (they're looking for nutrient rich seeds inside). Though Mowgli has been known on occasion to schmeer - he has yet, to our knowledge, eaten it (a lot). As we can hope that eventually Mowgli will be trained, I'm going with him on this one. Chimp 1 - Mowgli 1

III. Violence: You remember that lady who had a chimp as a pet and got attacked? You don't? Feast your eyes on this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Has Mowgli had his moments? Sure (read more about it here). Has he taken our faces off and danced a jig on our skull innards? Not yet. Win goes to Mowgli. Chimp 1 - Mowgli 2

IV. Sounds and Vocalizations: Chimps are among the noisiest of all wild animals and use a complicated system of sounds to communicate with each other. A loud "wraaa" call, which can be heard more than a mile away, warns of something unusual or disturbing. They "hoo-hoo-hoo," scream, grunt and drum on hollow trees with the flat of their hands, sometimes for hours. So does Mowgli.... It's a push. Chimp 1 - Mowgli 2

V. Socializing: Chimps touch each other a great deal and kiss when they meet. They also hold hands and groom each other. A chimp often has a special "friend" or companion with which it spends a lot of time. So does Mowgli (his name is Kevin by the way). Again, it's a push. Chimp 1 - Mowgli 2.

VI. Tools: Chimpanzees use large sticks and branches as clubs or throw them at enemies like leopards and humans. They also use grass stems or twigs as tools, poking them into termite or ant nests and eating the insects that cling to them. They are able to wedge nuts between the roots of a tree and break the shells open with a stone. Mowgli goes to occupational therapy three times a week - and he's doing the best he can damn it! Cut the guy some slack! The win goes to the chimp...for now. Chimp 2 - Mowgli 2.

VII. Intangibles: Though chimps hug, no one hugs like Mowgli. Though chimps have been known to express complex emotions, they don't have a smile that melts your heart. He's a one of a kind kid, and I wouldn't trade him for any chimp in the world. That said, I'm sure this post will be widely circulated when I'm having my face surgically reconstructed, as "Dad's famous last words".

Mowgli wins 3-2.

Adventures in Expressive Language

Simply put, expressive language is the ability to express wants and needs. Though Mowgli possesses some expressive vocabulary (particularly as it pertains to popsicles - "I want purple popsicle, please!") as well as some of the language forms and concepts, like many children with ASD, he struggles with language processing, and the finer points of pragmatic and social language. When coupled with his difficulty self-regulating and his cognitive rigidity, language arguments, or in other words, conflict that begins with or is driven by language, cause him the most stress and disruption. And without the expressive language necessary to work through the issue, Mowgli seems compelled lately to resolve all issues the same way - with relative levels of physical aggression and/or self-injury. Most of these events can be broken out by level of severity for greater simplicity in explanation.

1. The Displeasure Punch: This involves a minor displeasure such as "No, Mowgli, you've already played enough computer for today" followed by full eye contact, a grunt, and what appears to be Mowgli combing his own hair with his knuckles. This is purely a self-injury shot across the bow, and is actually sort of funny to watch - he's preparing us for something worse, his version of "I better get my way or else" - a standard tantrum behavior for children. We usually laugh these off and refuse to give in because it isn't healthy for him to think that he can manipulate us with such a, quite frankly, lame ass effort.

2. The Hug and Scratch: This is extremely devious. It usually occurs in the morning when he doesn't want to get ready for school. He'll lean in to Amy as if to hug her, and then once he has her locked up, he scratches her neck or back. Again, we try not to react to this behavior because it's bullying, and there is really no mystery why he's doing it - he doesn't want to go school. Message received.

3. The Alligator Punch: This is usually the next stage of anger after the Hug and Scratch. If he doesn't feel like he satisfactorily made his point with the scratch, he makes two punching fists, but then comes at you with both fists clapping together in front of him, like an angry sideways Pac Man. We usually just dodge this and ignore it - again, there's no great mystery why it is happening.

4. The Shake and Bake: This is where it starts to get a bit more serious. These are the instances where he can't get his point across, we're struggling to understand him, and he's simultaneously being told to do something that is not preferred (pretty much anything that doesn't involve playing on a tablet). These are the instances where his front brain (where anger resides) takes over and you might as well be trying to convince a cat to take a bath. And since we don't have the ability to freeze and reverse time (yet) there's no going back at this point, and there isn't any way to diffuse it, except walk away and let him left/right, left/right, left/right the beejesus out of his head until he decides that he's made his point. Redirection and calm is only attainable if he decides that it is, there's nothing we can do to change the course of events, so distancing ourselves becomes the best option. Which brings me to...

5. Defcon 5 - Total Annihilation: This is what happens when a pig-headed gentlemen such as myself decides that he is going to directly confront Mowgli during a Shake and Bake situation, and compel him to act "appropriately". It took a number of these events for me to learn my lesson, but realize that I'm 25% Trunfio - my grandmother's uncle once found himself stuck in a cage with an angry, hungry bear (he was a zookeeper) and rather than flee the cage, decided to fight it. That said, the last time this happened, which I realize now will be the very last time I ever confront Mowgli and try to calm him down from a Shake and Bake, it ended this way:

That's a full length mirror. He used his head to break it. Before everyone starts gushing about the "poor child", recall that this is SELF injury - I didn't throw him into a mirror - he walked down the hall, grabbed it with two hands, lined it up, and drove his head through it. Our immediate instinct was to make sure he was okay (which he was) and remove the glass from the area.

After thinking about it for quite some time, I realized that smashing the mirror was his only way to express total frustration and anger. He can't yell at me, or tell me why I'm being unfair, or how he wishes I would just leave him alone. He can't do any of that. So he does what he can to get the point across. I got it now buddy, I hear you loud and clear.

As time goes by

For those of you that read this blog regularly, you already know that Mowgli is what I have coined a "regression model" autistic child. On the macro level, he was hitting many of his developmental goals early on, only to lose them all suddenly (read here for more). On the micro level, he regresses every time there is a moderate break in his regular schedule. What that means to us and our family is that after a week vacation from school, the following week (or recently, more than that) becomes an unholy adventure in anxiety and distress.

In the last few weeks, Mowgli has regressed to the point where tantrums and self injury have once again become a large part of our day (they had all but disappeared in the last few months). He has left bruises on his body and has emotionally unnerved a number of new victims (apologies to the bus matron and his teacher - but there really isn't a good way to prepare someone for witnessing a small child punching himself in the head).

We met with the school psychologist and Mowgli's therapists this week and we talked a lot about why we felt this was happening. I did some research (as I always do when I don't know what else to do) and discovered that the two parts of the brain that are commonly believed to control temporal perception (the cerebellum and the basal ganglia) are also known to be areas of the brain that are effected by ASD.

As one researcher put it:

In typical people, the cerebellum is a primary site for the integration and modulation of sensory and motor activity. It receives significant amounts of ascending sensory input from the tactile (touch), vestibular (movement - with which it has a direct connection), and proprioceptive (body awareness) systems. The cerebellum also receives signals that are being sent down to the muscles from the motor cortex and helps to modulate that information for postural control before it travels down into the brainstem. It fine tunes motor responses, and helps to control the smoothness with which we move. The cerebellum in some children with autism has been found to have an excess of axons within it but their distribution is abnormal. In addition, the links that should be made from the cerebellum to other structures appear to be decreased. There are also fewer Purkinje cells in the cerebellum. One of the functions of these cells is to arouse the reticular nuclei, which stimulates the arousal of muscle tone and helps a person to change the focus of their attention.

[and again, the same author later states]:

Another area of the brain found to have some abnormalities in its structure, is an area called the basal ganglia. This structure which lies deep within the cerebral hemispheres, serves to connect the cerebellum with the cerebrum in order to regulate automatic movement. The basal ganglia contain a structure called the caudate nucleus. The caudate nucleus in children with autism is enlarged. Increased size of the caudate nucleus in the basal ganglia has been associated with compulsive behaviors, difficulty with changes in routine, and stereotypical motor movements.

Well that covers it, eh? In many ways, I suppose that as a rational thinker, and as someone who has always believed in scientific research above all else, that I should be satisfied that with just an hour of research I was able to find a scientific explanation for Mowgli's behavior. Yet I can't help but feel gypped.

Knowing why Mowgli behaves the way that he does, though helpful in maintaining a modicum of sanity at times like these, and for thinking clearly about his condition over the long haul, nevertheless doesn't solve the problem of how we are going to keep him from smashing himself in the head with his own hands, or get him on a bus in the morning that he doesn't want to take, or quite frankly help us very much at all. For that we are left to our own instincts and abilities.

Yet, try as we might to get him back on his schedule, it has been a tough road to hoe. Tricks and strategies that work 95% of the time, seem to fail all the time. His responses become more irrational and his tantrums last longer. As a parent, you are constantly walking the line between limited patience and anger (which, once that happens, you might as well just forget all of the work you've put in, because his reaction to our anger is far angrier and more irrational than we could ever muster). In the end, when all else fails, the only thing keeping us going is love.

Now before everyone gushes about how wonderful it is that the love between a parent and child wins out over all else, please understand that I don't want anyone to think that what I am talking about here is rainbows and unicorns. The love that gets you through these times is more like the love that Chris Rock describes in his standup:

If you haven't contemplated murder, you ain't been in love. If you haven't seriously thought about killing a motherf*&^er, you ain't been in love. If you haven't had a can of rat poison in your hand and looked at it for forty-five minutes straight, you ain't been in love. If you haven't bought a shovel and a bag and a rug to roll their ass up in, you ain't been in love. If you haven't practiced your alibi in front of the mirror, you ain't been in love.

The kind of love that gets you through these times is the kind of love that can survive pain, sadness, emotional distress, anxiety, depression, and more pain. It is the kind of love that doesn't come with flowers and chocolates, and can't be expressed in a Hallmark card. It is the kind of love we see in the movies, but distilled down to its absolute core, stripped of all of its pretense and bullshit. The love I'm talking about, the love that gets you through these times, is the last thing that you are left with when you have nothing else, when there aren't any immediate answers to your problems, when you don't have any other options except quitting. But the best part of this kind of love is that it won't let you quit. No matter how low you've sunk, no matter how little hope you have at the time, the kind of love I'm talking about, this immutable love, that son of a bitch, it just won't let you quit. It gets you up every morning and forces you to face the day. It guides you through tantrums and self injurious behavior and screaming and scratching and unbearable discord, and at the other end, when you come out the other side (and we always do when it comes to Mowgli) that love is waiting for you with a pat on the back for a job well done. In the end, that love will reward you with all the riches in the world - a hug, a kiss, a smile, and a chance that you and your child will live to fight this condition another day.

Praise of Speech Therapists

A few weeks back, Fred and I attended a teacher's conference for Mowgli. We requested that his therapists be present at this meeting. It surprised me to learn that this request was considered special. At Mowgli's preschool program, we had always met with his entire team. Which included his teacher, 3 therapists, and behavior specialist. Sometimes we also had meetings where the family support specialist, classroom aides, and school psychologist, were present. That's a lot of people working hard, to make sure my child succeeds!
The conference meeting was the first time we met with Mowgli's new school therapists. Mowgli has a speech therapist, occupational therapist (who works on his fine motor skills and sensory issues), and physical therapist, who works on some minor large motor skill issues, but mostly helps with teaching social skills, and providing sensory input through physical activities. Each one of these ladies plays a significant role in Mowgli's developmental education and progress.
During the meeting, the therapists updated us on Mowgli's progress, which was more positive compared with the sterile (and depressing) report card he had received. We asked that they send us email updates weekly, so that we could be aware of any progress or issues that may come up. They were more than willing to help us in any way they could.
Now I'm going to share with you this week's speech therapy progress report. I truly believe that in addition to Mowgli's family, his speech therapist (past, present, and future) is the most important person in Mowgli's life.

Fred and Amy,

Mowgli has done well in speech therapy these past two weeks. He is
consistently recognizing the concept of "under" in the pictures that I
have been using. I have started using some new pictures to see if he
can generalize the concepts to unfamiliar pictures and he has done well
so far with this. I am happy with his progress with this.

I have been able to completely fade the paper prompt I was using for him
to produce 3 word sentences using present progressive verbs. He does
point his finger in on the table three times though if the paper was
there, but he doesn't need it directly in front of him.

Mowgli continues to do well identifying objects by function and is just
beginning to say the name of the item i am describing rather that
pointing to the correct picture and repeating my description (i.e.
saying a pencil rather than point to the picture and saying write with
it).

I have begun working on simple "what" questions with Mowgli using
picture cards and some worksheets. He is doing well with this so far
and seems to enjoy the worksheet activities. I have also continued to
work on him stating "I need scissors" etc... when using these materials
- He does continue to need prompting with this, but we will continue to
work on it. He has been able to attend for the completion of the entire
worksheet this week.

I have a toy dog in my room that barks, runs, and does a flip. He has
been turning this toy on more recently and when he plays with it I have
been saying "Jump dog" and now Mowgli has been turning the dog on and
saying this too independently and without me initiating it - very cute!


When Mowgli is playing with a preferred toy or on the computer, I have
also been working on a little turn taking and using the phrase "my turn"
- He does not always like this but is allowing me to use the computer
mouse/toy for a short period of time. I say "my turn" and take the mouse
and click on something on the website he is on and then prompt him to
say "my turn" to get the mouse back - He at times does say "my turn"
without my prompting.

Mowgli is doing better at identifying his classmates as well - He is
able to identify 7-8 with a phonemic prompt (I give him the first sound
of a peers name and he is able to then state the peers name himself.
This is a nice improvement as well.

Hope you have a great weekend and I will see you tomorrow at his
meeting!


Seriously, this woman busts her butt, every day for my child! She is helping him learn to communicate with the rest of the world. I couldn't be happier with her, or with the progress my little man is making. This is what I call a Merry Christmas!

Great Expectations Part II

I've discussed the issue of expectations before, and it light of recent events, I thought that it might be a good idea to revisit the issue.

The first event worth reflecting on involved a shopping trip to BJ's Wholesale. While there, a young man was working at the checkout counter who seemed, well, oddly familiar. His mannerisms, his way of speaking, his physical gesturing all reminded me of someone that I was sure I had met before. As I moved down the line I realized that he was a young adult with Autism (don't ask how I know for sure, you just start to notice these things when you're tuned into it all the time). When it was finally my turn in line, we had the following conversation:

Employee: Hello sir, how are you doing?

Me: I'm well thank you, and how are you?

Now at this point, I will save you all the next ten minutes of unilateral conversation, which involved, among other things - Call of Duty, playing Call of Duty, Call of Duty blogs, Call of Duty cheat codes, Call of Duty miscellany, etc - but more importantly, the following statement:

Employee: To be honest, I don't like to stand on my feet all day, but other than that, all the people here are really nice and fun and this job gives me the money and free time I need to play...[guess which game he likes to play in his free time - it starts with a C and ends with all of Duty].

When I got home I told Amy what a relief it was to have met this young man, because he seemed to be living a happy and fulfilling (and most importantly normative) adult life. I jokingly told her that I couldn't see any sign of Pull-Ups sticking out of his pants, so clearly he had mastered potty training at some point between 6 and 18, which is actually great news, because we always worry about that.

Joking aside, those three terms have become my mantra in terms of expectations for Mowgli's life:

Happy

Fulfilled

Normative (in the social-emotional sense of the term - i.e. not punching himself in the head when he gets angry, or introducing himself by smelling you or pinching your stomach)

This issue also came up with the school district, which sent home a neurotypical report card a few weeks ago with such hilarious zingers as "Can't complete the alphabet" and "Reading Comprehension - F". The teacher insists that the school requires it, but that no one really takes it seriously (can you imagine someone telling you not to take a something that outlines your child's absolute failure seriously?). In the meantime, his teacher continues to tell us how he's doing academically, as does most of the administrative staff (in defense of the therapists - OT/PT/Speech - they seem to be the only parties in all this that are accurately measuring what's important). At a meeting with the school psychologist last week, Amy drove home the point, and I echoed it, that academics, in the traditional sense, are quite frankly meaningless to us. In the end, we would be okay if Mowgli was totally illiterate, as long as we got to trade that for the promise that his life would be happy, fulfilling, and normative. This message has not been well-received, predominantly because the people we are talking to don't seem smart enough to understand that we aren't speaking literally, but rather we are simply trying to make a point about expectations, and the fact that we all need to be establishing appropriate and reasonable goals for Mowgli. Eventually they'll get it, because Amy and I are resilient enough to compel them to act the way we want them to, but it is obvious to me that most educators in this community are so wrapped up in their own sick, twisted, mandated standards, that they are incapable of realizing how ridiculous it is to give an Autistic kindergartner a neurotypical report card.

One of the most important aspects in understanding autism is to first establish appropriate expectations of that person. At its core, it's an easy task, because human are social creatures and we instinctively do it all the time. The hard part is establishing a different set of social and emotional rules for generating those expectations.

When someone asks "Is he potty trained yet?" and I respond "Not entirely, no." the response is usually one of concern. For most people, a 6 year old child that isn't potty trained doesn't meet the expectations they've established for neurotypical children. Yet we were ecstatic a few weeks ago when Mowgli, of his own volition, walked into the bathroom, closed the door, and pooped in his diaper. This is incredible progress, but only because our expectation is that we would like to not have to wipe his butt with a wet wipe on his way out the door to the Senior prom. Sound ridiculous? Sure, but for us it is the expectation we have established for him that we know can realistically be met.

When people hear Mowgli's limited speech again the response is one of concern, because again, it violates the standard expectation of a 6 year old. For the better part of the last three years I have come home at approximately the same time, and have had to essentially compel Mowgli to acknowledge my presence, which even then amounted to no more then:

Me: Hi Mowgli!

Mowgli: Hi Mowgli!

Me: How are you?

Mowgli: How are you?

This type of echoing is standard practice for autistic children and is Mowgli's normal response to conversations that he is incapable of maintaining. Then, a few nights ago, having completely eliminated any expectation of acknowledgement, I turned the corner and saw Mowgli, who made immediate eye contact and said:

Hello, Daddy.

Two words and three seconds of eye contact. All of it unprompted. It was the proudest moment I've ever had as a parent. I was overwhelmed with pride. I felt the same way I did when I completed my first 1/2 marathon, because I knew that it took just as much effort and training and guts for Mowgli to do what he had just done, as it did for me to run that silly race.

He did it again when I picked him up from Saturday Clubhouse, and I was bragging to everyone at UCP like I was Neil Armstrong's dad "We landed on the moon!". He hasn't done it since, but I don't feel bad about that. I know it's in there, somewhere deep inside, and I know that when he's able to put it all together, we won't have to worry anymore, because he'll have met our expectations.

Happy. Fulfilled. Normative.

New Beginnings

Mowgli turned 6 years old yesterday! In celebration of his birthday, I figured I'd better post an update. It has been a few weeks since I have written...we have a lot of birthdays, and different events going on during this time of year.

Let's see...at the beginning of September, Mowgli started kindergarten. It was a tense time for us. We were unable to sell our house, and the thought of starting Mowgli in a school district, that has a less than stellar reputation, was hard to bear. Many times since Mowgli was born, we had been warned about the quality of the Utica School District. After Mowgli was diagnosed, the warnings became more intense. It had been stressed to us that, if a neuro-typical child could become neglected by the school system, one could only imagine what would happen to a child with special needs. Our minds had been marinating in all the warnings, and I spent the days leading up to the 1st school day feeling helpless and disappointed. Once again, I felt that I had let him down.

The week before school started, we had a meeting with Mowgli's new teacher. We knew that Mowgli was going to have a heck of an easier time transitioning if he knew where he was going to school, and was able to see a familiar face. The meeting went fairly well. Mowgli was able to explore every nook and cranny of the classroom. His teacher allowed him to sit at her desk, and he went into the little bathroom several times to turn on the water, and flush the toilet. He smelled (and tried to taste) the toys, he opened drawers. Had he not been able to do all these things ahead of time, the desire to familiarize himself with the classroom, would have consumed his thoughts during those first few days. My first impressions of his teacher were that she was kind, and open. She exhibited some nervousness at Mowgli's energy level, and joked about needing to buy some running shoes. She explained to me that she had worked as a teacher, then administrator, then teacher again throughout the last 30 years. Her most recent experience was with special needs students in a junior high setting. Although she had not worked specifically with autistic children, she assured me that she had just completed some training on working with children that were on the spectrum. Her lack of ASD experience made me nervous, but her honesty made a positive impression on me. Her willingness to meet with us and answer all of our questions (and let Mowgli ransack her classroom!), were also good signs. While we talked, I would catch Mowgli glance at her, smile, and slowly flick his fingers in front of his face. Clearly, this new teacher interested him too.

When the bus pulled up on the first day, I was thrilled to see a familiar driver and bus matron. Over the next week, Mowgli came home from school happy. The teacher's notes home were very brief, but positive and encouraging. All my fears about the new school had been lifted, and I thanked God.

The following week, we enthusiastically went to the school's "open house". Immediately, his teacher alerted us (and the other parents there), to the issue of our children's inability to sit and do their school work. In a classroom with 9 autistic children and 2 children with MR, ranging from age 5 to 9, my immediate, internal response was "yeah duh!". The teacher went on to explain that the kids were "all over the place", and that she was having a hard time controlling the classroom. When I looked around, I noticed the lack of tools for sensory input. Mowgli's problem with inattention is directly related to his sensory issues. Mowgli is mostly a "sensory seeker". Mowgli's proprioceptive (which, senses body position) and vestibular (which, senses balance and movement) senses, are under-responsive. To put it simply, Mowgli can spin for an hour without getting dizzy. He is what we call a "crash and burn" kid. He jumps, he bumps, he touches things (usually with a lot of pressure), he breaks his crayons, he chews everything. All these things he does in an attempt to be connected with his body, and his surroundings. Anyone who has ever been dizzy from an ear or sinus infection can understand how it feels to have a vestibular issue. Anyone who has ever had a foot fall asleep, and tried to walk on it, can get an idea of what it's like to have an under-responsive proprioceptive sense.

I began to explain to Mowgli's teacher, that he would have a harder time attending, if his sensory needs were not being met. I asked her about his occupational therapist (who was in charge of his "sensory diet"), and found out that the therapists (speech, occupational, and physical), had not started working with the children. The room went silent. A mother of a little boy in Mowgli's class, explained that her son only communicated with sign language. "Did she (the teacher) sign? Did one of the 3 aides?", she asked. The teacher could not sign, and didn't know when the therapies were to start. She had anticipated our concerns, and was feeling overwhelmed herself. My confidence in Mowgli's new school was plummeting. No wonder Mowgli was not sitting to do his work, he was sensory seeking the entire time he was at school! To make matters worse, the teacher informed me that she had been keeping Mowgli inside during recess, to help him clam down...she thought that would help him. What?! That was the only time he was able to get some sensory input, from jumping and swinging, and he was being denied that time! It was too much, I looked at Fred, who was talking quietly to a mother who was crying. It was time to go.

That night my husband wrote an email to the superintendent, district head of special ed., principal, and teacher, expressing our concerns. The next day, my husband called the principal. Mowgli went on recess that day (and every day since), the therapies started the following week (as per the amended IEP, that none of the parents had received). The teacher called a few days later to update me on Mowgli's progress at school. Things were going so much better!

Throughout the "first week drama", my only comfort was that, Mowgli woke up every morning happy to go to school, and came home happy too. Clearly, his teacher was trying her best to keep him content. I know her heart was in the right place, she was just beginning to understand the individualized, and complex issues that come along with a child diagnosed with ASD. She wasn't working with 13 and 14 year old kids anymore. She was working with children, at the age when the delays and sensory issues are at their most severe. It is not a job for the impatient, or inflexible. If she was up for the challenge of teaching these students, I was going to help her any way I could.

Recently, Mowgli was sent home, for what his teacher (and school nurse) thought was an earache. I was perplexed, since he had not had a cold, and had been happy when I placed him on the bus that morning. I took him to the doctor's and his ears were healthy. That afternoon, his teacher called to check in on him. I explained to her that he was doing well, and we began to investigate the cause of his ear covering, and screaming. I suspected that he was reacting negatively to some sort of noise, or sound (sensory issue?). "Was there a child crying at the time? Was there music playing?", I asked. "All of the above!", his teacher chuckled. She decided that she would need to turn the volume down on the cd player, and suggested keeping the lights off (during that time) too. Those ideas sounded great to me. A few days later, I received a note from the teacher, that the ear covering and screaming (from several of the kids), had stopped. It felt great to have helped the teacher find a solution to the issue.

Although we had a bumpy start with Mowgli's new school, things have since been going along smoothly. The staff isn't as ASD educated as they were at Mowgli's old school, the therapy toys aren't as plentiful or sophisticated, but the teacher is genuine and Mowgli's adapting beautifully.

Mowgli's speech and language issues are slowly, and steadily improving. He hasn't been having tantrums, or punching himself. He's following directions better, his fine motor skills are improving. He actually opened his birthday gifts, sat near his birthday cupcake (without impulsively touching the candle flame), and blew out his candle last night! These were skills he didn't have a year ago! He is making friends with his classmates, and is becoming a class clown. He thinks farts, burps, and yucky things are funny. Occasionally, he and another student like to be "silly" and disrupt the class. Well, he might have ASD, but he's still an Arcuri!

It makes me smile, to see that he is doing "normal" kid stuff. It is a pleasure to see him learning, developing and happy.

Great Expectations

When Amy first became pregnant with Mowgli we discussed, as any couple does, whether or not we wanted a boy or a girl. At the time, Amy really wanted a boy, and I for a number of reasons, wanted a girl. In my mind, I wasn't ready to be a father to a boy, which comes with a whole set of rules that differ significantly from being a father to a girl. When we finally found out that Mowgli was a boy (despite my disagreement with the sonogram technician), I had to adjust my expectations. Granted, no more than any parent who expected a girl and got a boy. You see, I always assumed that one of the harder parts of being a parent was having to adjust your expectations, and having to do so for as long as you decided to hang around this earthly realm.

That said, since Mowgli's diagnosis, I have learned that adjusting your expectations is not only the hardest part of parenting, but it is the hardest part of being a parent of a special needs child as well, but in a very different way. By way of example, when Mowgli was born, I instinctively wanted him to love baseball, mostly because I love baseball and I wanted to share that with him. As he developed, and we found that he had difficulty playing catch, I adjusted my expectations that he would one day play baseball well. After his diagnosis, I again adjusted my expectations, when I realized that he didn't have the theory of mind necessary to play baseball, and decided that I would be happy if he just liked to watch baseball on TV. Since then I've realized that he doesn't have any interest in watching baseball, for the same reason he is incapable of playing it. At this point, I have adjusted my expectations to the point that I just hope he one day can participate in activities with other children that aren't solitary activities (like bouncing on his exercise ball or swinging). In fact, it is one of his individualized education goals - to participate in physical activity that requires social reciprocity. In other words, having a catch has taken on a whole new meaning and significance then if Mowgli had been neurotypical.

Another example is potty training. Of course "all kids are different" (which I really hate, mostly because it has no empirical limits and provides nothing in the way of useful advice, it's just a vapid statement about the unique nature of children). That said, having the expectation that your child will potty train at approximately the right time (between the ages of 2-4) is something that every parent has. We've not only abandoned that concept, but we had to adjust our expectations to the point that earlier this week we were discussing how nice it was that Mowgli had moved away from "exploring" his waste and playing games with his urine (think slip and slide indoors on hard wood floors, but without an available water source - "speaking of nobody's looking").

Effective communication (more than a few word utterances), moderately healthy social behavior, physical and emotional self-sufficiency - these are the things that we use to judge ourselves as special needs parents. All of the advice in the "What to expect..." series of books might as well be "expect your child to win the Nobel Prize at age 8 - this is standard" or "your child may intuitively know complex surgical procedures - help them by fostering their interest in advanced human anatomy", because that's how useful those books are for special needs parents. Benchmarks, developmental time lines, and, for your own sanity, expectations, are replaced by glimpses of hope, double takes, and talking to yourself in the basement with tears in your eyes something to the effect of "sweet beautiful baby Jesus, if you're out there, please show me that this is all worth it."

Tomorrow is a new day, and not only have I given up on the possibility that one day he'll wake up and tell us that he was just screwing with us to get as many popsicles as he could, I've also given up on having any expectations whatsoever. I don't try to predict what will happen, I don't plan anything past tomorrow. It's not fair to him to have expectations, and it isn't healthy for us to hold on to them. This way, everything he does that is the slightest step forward is its very own miracle - worthy of satisfying my need for a daily (or during tougher times - a weekly) confirmation that things aren't static. That, though sometimes glacial, they are nevertheless moving forward.

On really good days, on the days that he does something so beautifully unexpected that you barely believe that it even happened, those are the times that he and I are sharing something, those are the times that he's asking me "Hey Dad, you wanna have a catch?"