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.