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?"

Siblings and Friends

The giggles of my daughter are heard, coming from my son's room. I consider the laughter a good sign, only eerie silence occurs during times of trouble making. The giggling increases in volume, as another voice joins the first. I hear my daughter say, "I'm going to tickle you!". I decide to go investigate, if Mowgli doesn't want to be touched, this could end with his sister getting pinched.

I walk into the bedroom. Both my children, Mowgli and Baby Girl (B.G.) are sitting close on his bed. Both children are smiling, they lock eyes as B.G. leans in to give her brother another tickle. They are three years apart in age. B.G. is a month shy of her 3rd birthday. With the way she interacts with he big brother-the patience, the love, you'd think she was 2 years old, going on 30. Only her little body gives away her age.

I stand quietly in the door way watching them, hoping my presence doesn't disrupt their play. B.G. tickles Mowgli again. He laughs and leans in, wrapping his arms around her shoulders, they hug. Mowgli presses his lips firmly against B.G.'s cheek, and holds them there for several seconds, he's giving her a kiss. Most children in B.G. 's position would pull away, but not her. She is accustomed to her brother's abrupt (and sometimes forceful) displays of affection. Mowgli unlocks his embrace, and the tickling from B.G. continues.

I continue to watch them, a smile on my face, a feeling of contentment enveloping me. Any parent will agree, that the sight of their children happy together, is one of the greatest gifts. What I observe next, pushes me to tears of joy.

Arms outstretched, fingers wiggling, Mowgli tentatively leans towards his sister. He is attempting to tickle her. He seems so unsure, his eyes darting from B.G.'s face, to her tummy (the target of his tickling). B.G. recognizes his attempt and giggles, as his fingers lightly touch her. I gasp, and immediately praise Mowgli. I know I have just witnessed a momentous event. Mowgli is actively socializing with his sister. Not only did he respond to her, he reciprocated!

The inability to socialize or the impairment of social skills, is the hallmark trait of a person with autism. Long after the the struggles with speaking, coordination, and physical sensitivities (over or under) are overcome (or effectively managed), the difficulties in socializing persists. Many adults with autism, have developed formulas to help them interact appropriately with others. Many dissect their past encounters with scientific precision to come up with these formulas. If at any point a formula fails to get the desired result, they are thrown off balance. The book, Understanding Autism for Dummies, written by Stephen Shore, Linda Rastelli, and Temple Grandin, gives some great examples of the person with autism's struggles with relationships (both Shore and Grandin have autism).

As I watched Mowgli tickle his sister, I could see him testing his new social skills. I could almost hear him thinking 'Will she pull away? Will she cry? Don't tickle too hard. Avoid poking her eyes!' He had learned from past experience what can happen if he tickles the wrong way. The skills that came as an infant to his sister (for example, reading facial expressions), have to be taught to Mowgli.

I once met a woman who was the younger sister to a brother with cerebral palsy. She looked at B.G. and said "She's a special child, because she has a brother like Mowgli. She will always love and care for him. She will always see the world with different eyes, because of him."

I believe B.G., would have been special regardless of her brother's autism. Her personality is vibrant. He nature is gentle and inquisitive. She radiates happiness. I cannot argue the fact that her brother's existence has enhanced those qualities, as her existence has positively impacted his life. She is his best friend and greatest teacher.

The children scramble off the bed, B.G. chasing Mowgli out of the bedroom. As B.G. passes me, I stop her, and give her a kiss. "You're a good sister", I tell her. "Thank you mommy!" she replies, then yells to her brother "I'm gonna get you!". He giggles and runs down the hall, a game of tag has begun. Yes, special indeed!

Parents just don't understand

When you have a child with autism, a school day doesn't go by without thinking that you'll get a call or a note home about some new behavioral issue. Granted, Mowgli has been in a special needs preschool for the last year and a half, so the number of calls have been minimal given the aptitude of the teachers and staff at dealing with it. Regardless, there is one behavioral issue that no one - not the therapists, not the psychologists, not the teachers, and, quite frankly, not even the parents - are prepared to deal with. It is a behavior that truly separates neurotypical children from autistic children. Whereas parents will frequently try to make us feel better by saying things like "Well Bobby only wears sweatpants too", or "Sally hates loud noises and new places", the proverbial buck tends to stop at self-injurious behavior. I rarely bring it up to other parents, particularly parents who don't have special needs children, because first, it is very unsettling, and second, it is one of those super awkward social situations where you leave the other person with no possible way of backing out. Though it has come up, it certainly isn't the kind of conversation that you want to dive into on a regular basis.

Mowgli luckily (and I say luckily, because the stories of autistic children putting themselves in the hospital via self-injury are far from rare) has just one dangerous SIB - he punches himself in the head when he is overstimulated. This behavior (coupled with less intensive pinching and scratching) has evolved over time. When he was younger he would punch himself in the thighs, either once with intense force, or repetitively with slightly less force. Over time, that behavior evolved into head punching, and the more dangerous (though rare) head smashing - which involves striking his head against extremely hard surfaces.

As I said before, a parent of a child with autism ALWAYS expects a call from the school. In fact, you spend most parts of everyday expecting a call from someone. It is one of those lingering stresses of the circumstance - it rarely consumes you, but it never goes away. Again, I've heard from other parents that everyone feels this way. Perhaps, but do all parents worry that the very next call they get at work will be "You have to come and pick up Mowgli, he's broken a number of blood vessels on his head" or "Mowgli lost consciousness briefly during a tantrum"? I know that most people just want me to feel normal, so they try, with good intentions, to explain to me how my son is just like their children. In the end though, my kid isn't like their kid, and he isn't like their kid in very profound and difficult ways. I'm the type of person that doesn't engage in conversations about Mowgli with other parents, not because I'm ashamed, but because I don't think it is fair to engage parents of neurotypical children in conversations that provide them with zero opportunities for anything other than sympathy or pity. It isn't productive, and quite frankly, it isn't fair to the other person, who more times than not is simply trying to be nice.

The last time Mowgli injured himself at school I drove from work to pick him up. I spent the whole trip thinking about just how badly he had injured himself. A week before that, he had nearly knocked himself out on the concrete steps of the Uptown Theater because he couldn't stop obsessing over the Slush Puppy machine, or wanting to walk out onto Genesee Street alone. Everyone there seemed uneasy at the sight of it, and though that normally doesn't phase me, the place was full of special needs parents (it was a sensory-sensitive showing of Cars 2). It is difficult for anyone to witness. When I did finally arrive at school, his teachers looked visibly shaken. There was an eerie silence, and a sense that no one quite knew what to do. What I've realized is that no one does know what to do.

We've developed a behavioral plan and strategy for minimizing SIB, but in the end, Mowgli will be the one that decides. Some autistic children never break the habit (which causes long-term, lasting damage), but most do break it, and many of them find less destructive ways of expressing themselves. Nevertheless, research has shown no consistent positive results in any one strategy for combating SIB. Like everything associated with autism, the behavioral plan is just one more ill-fitting tool in the toolbox that you have to work with. Dealing with autism is always about trying to re-wire a light fixture with a hammer or do rough carpentry with a wrench. In the end you can get the job done, but it never quite feels like you're using the right tool.

I don't want people to stop being interested in Mowgli, or to stop wanting to be compassionate - I just want them to stop trying to make us feel as though we're just like every other parent. We aren't, and trying to convince us that we are just reaffirms how far off we actually are - you shouldn't have to convince someone that they're the status quo. Mowgli's SIB, as well as a few other choice behaviors, have inevitably changed the trajectory of his development (and our development as parents) to the point where it is hard to imagine a circumstance where we could sit with other neurotypical parents and laugh about "kids just being kids". We're okay with that, we just wish that everyone else was okay with that to.

Would it matter if I told you....

We took Mowgli and his sister to the zoo last week. Like every trip we take, it was the worst of times and the best of times.

The first 20 minutes were spent trying to convince Mowgli to interact with the animals (for instance the sea lions performing tricks) instead of trying to interact with the zoo's most dangerous (and hidden to most children) mechanical components. Mowgli's obsession, for instance, with the high powered diesel engine that runs the sea lion pool pump, his equally uncontrollable interest in the busted out AC unit sitting behind the food hut, or, my favorite - his love of the stagnant water filled, west nile virus breeding ground that is the zoo's "wishing fountain" (where I imagine the most frequent wish is something to the effect of "I wish that the CDC finds a cure for whatever it is I'm infected with now").

In his usual fashion though, once Mowgli realized that I wasn't going to let him mutilate himself or swim in disease-infested water, and once I had purchased everything at the food hut that was blue (Slush puppie, cotton candy, popsicle) we had a really nice time.

[Side Note: A special thanks to the new Executive Director of the Utica Zoo, who has made some modest, but important changes since she took over. Things are noticeably cleaner, stuff that was broken is either fixed or closed, and they've relocated (or lost through attrition) some of the less healthy animals to better facilities.]

He loves watching the sea lions swim, he likes talking about and watching the monkeys, and he loves the fact that he can just roam free and explore - that he doesn't have to worry about following a particular schedule or program.

That said, I can't help but notice the reaction that his behavior elicits from other parents and children. I suppose that I just expect certain things from him at this point, so I don't even flinch when he makes weird noises, or when he gets excited and starts the jumping windmill jazzercise move he's perfected (jump up with both feet, windmill your arms as many times as possible before landing, and then flap hands while standing back up from a crouching position). But I do notice that other people see it, and I suppose that it is natural for them to have a strange reaction, after all, it is a little weird.

What I struggle with everyday is whether or not I should explain his behavior to people, or if I should just let it go. I'm confident that his condition is no one else's business, so it isn't an issue of whether or not other people are happy/comfortable with his behavior. What bothers me is whether or not I am doing him a disservice by telling people or if I'm doing him a disservice by not telling people. In other words - would his life be easier if people knew ahead of time? I've also thought about buying these specialized business cards that explain what's going on, or purchasing 30 or so t-shirts for him to wear like the shirt to the right, which actually captures my thought process in these situations.

In the end though, my concerns that I'm introducing him to people as a condition rather than as a person overwhelms my urgency to try and make the world an easier place for him. There is no guarantee that telling people will make them any less ignorant in these situations. Additionally, there's no reason to believe that things would be any easier for him if everyone knew ahead of time what to expect. In fact, I knew exactly what to expect from him when we got to the zoo, and yet I spent the first 20 minutes astonished at just how bad the day was starting, and equally as surprised that the day turned out to be such a success after it had started so poorly.

Mowgli's condition exists regardless of people's knowledge of it, and likewise, people's knowledge of it will not change or improve his condition. With that in mind, I'd rather let people figure things out for themselves and judge (or not judge) as they choose fit. Though he needs to learn to be an active participant in society, and though we are working everyday to make that a reality, I want him to do so on his own terms, and I want that participation to be colored not by the world's varied and oft-confused understandings of Autism, but by Mowgli's infectious personality, gorgeous smile, and insatiable interest in exploration and discovery.

What a difference a year makes

We get so bogged down with the day to day, that we fail to recognize how much progress Mowgli has made. I sometimes feel like his development is going in slow motion. It is natural for children like Mowgli to experience several periods of regression prior to achieving a milestone, which makes it difficult for us to maintain perspective. Until I sat down and reflected on what life was like for Mowgli, only a year ago, I didn't realize how much my little boy has accomplished!

A year ago (at age 4 and a half), he didn't make much eye contact. He would frequently speak to people with his profile to them. The language that he had was one word commands, “water! DVD! crackers!” Now, I see those big brown eyes much more frequently when talking to him. His one word commands, have developed into complete (albeit scripted) sentences, “I want water please”. A year ago, he couldn't put a shirt on, swing on a swing, pedal a bike up an incline, or start his own bath. A year ago, he couldn't use a computer mouse. A year ago, he couldn't help me clean up his toys or climb up and down stairs (without risk of falling). A year ago, he wasn't even close to being fully potty trained. Now he is nearly trained!

All of Mowgli's accomplishments were made with the skills, dedication, patience, and care of his teacher, behavioral specialist, aides, speech therapist, occupational therapist, and physical therapist. I will never be able to thank them enough for all that they have done for him. It really does take a village to raise my little boy! The next chapter of Mowgli’s education is about to begin - kindergarten!

I know he has a long way to go, but every single day he's learning more and more. He's moving forward, he's living (and loving) life. He is meeting and exceeding expectations! I am so proud of him, and looking forward to what the next year brings.

Children with Autism: A First Contact of Sorts

Some of you have asked about the nickname that we use for our son. Truth be told, as the blog is open to the public, we didn't want to use his first name since it seems to be common practice not to (for somewhat obvious reasons). That said, I wanted to come up with something that was relevant to the situation.

We often tell people that Mowgli's only problem is that he was born to an American family living in a civilized society, and that if he had just been born to a family of native hunter-gatherers in the Amazon rain forest, that most of his behavior would seem entirely commonplace. His constant want for nudity, his roaming freely through the landscape in search of nothing in

particular, and his knack for experiencing his world through taste and smell wouldn't be a developmental disability,they would all be the social norm.

For those of you that took an Anthropology class in college, you probably remember this gentlemen from the documentary "First Contact". The film recounts the discovery of a flourishing native population in New Guinea in 1930, a part of the world that was thought to be entirely uninhabited, and the initial contact of white Australian prospectors with the native population. If you have never seen it, take some time out of your day and watch it - it is extremely fascinating. If you're interested in learning about children with autism, and how to best understand them, I would tell you that you can't possibly do so without first watching this movie. I'm no clinical psychologist, or social anthropologist, but when my son does something inexplicably frustrating, either in public or in private, I try to think of the guy in the photo above. It seems ridiculous to you and I that a person would adorn themselves with a biscuit box. That said, it was the only one of its kind at the prospector camp, so clearly, to the native gentleman in the picture, it had tremendous value - a one of a kind item.

Without generalizing about children with autism (which is dangerous, since every single child is uniquely different), I find that when I'm dealing with my son, or when I encounter the boys in his classroom, that every single experience is a sort of first contact. I can't understand why they would "adorn themselves with biscuit boxes" and they can't figure out why I don't get it. They see the world through a different lens, particularly children like Mowgli with sensory issues. Things are louder, brighter, smellier, scarier - like the volume on the world is turned too high.

Realistically, though many professionals have tried to develop ways for parents to "live like an autistic child" (playing music too loudly when you're trying to focus, as an example), we, like the white Australian prospectors, can only try to understand autistic children and do our best to meet them halfway between our understanding of society and theirs. We will never be able to see the world through their lens. Likewise, we need to further understand that autistic children will always have difficulty understanding our ways - despite our best efforts at social/emotional conditioning and discrete trial training (which are very important - please don't think that I'm being dismissive - in fact, I'll probably blog about how important they are at a later date), because they can only see the world through their lens. They don't have the pleasure of turning it on and off - it is how they currently and will always view their world.

People may think that the sometimes feral nature of our son makes him a nuisance in public places, but if you imagine how you would feel stuck in the jungle surrounded by native people who had their own strange social rule book that you were constantly violating because you didn't have access to it, who knew how to find their way around the jungle, who spoke their own language built on specific physical cues that you couldn't understand, who had special hearing that only collected what was important, rather than all the scary sounds of the jungle, then maybe you would understand what it is like to be Mowgli.

My son the inadvertent comedian

There are many behaviors that go hand in hand with autism that are harmless (hand flapping comes to mind, as do most benign facial ticks, or what we affectionately call "animal sounds" - dolphin squeaks, rhino grunts, etc). Some are dangerous to both the individual (SIB - Self-Injurious Behavior - which I will touch on in another post) as well as to others. And some, well, are just plain weird. Not in the "alienate a person from society" weird, but a Monty Python-esque nonsensical, silly walk weird. The kind that your brain can't comprehend until a few hours later, at which point you can do nothing else but laugh. Many of Mowgli's funniest moments have come from school, though they probably wouldn't be as funny had we not seen them at home first.

A more recent example was a call that Amy received from the school a few weeks ago. "Mowgli is walking funny - we're concerned that he may have a urinary tract infection." Amy said that she would monitor it. She realized later that, Mowgli WILL NOT, under any circumstances go number two at school. As such, he has engineered and developed a very specific way of walking that enables him to hold on for extended periods of time. It is a cross-legged walk, which if you've never tried such a feat, feel free to try it now. It is extremely difficult and very odd to the average onlooker. Periodically, he'll stop and pretend to stretch his thighs on a random object (presumably reinforcing the tightness of the leg-crossing).

We also get notes home from school everyday describing how his day went. Usually it ranges from "didn't eat his lunch, had trouble in circle time" to "struggled with transitions today, frequent tantrums." But every once in awhile we get one that I'm sure seemed reasonable when it was written, but makes us laugh hysterically (mostly because, sometimes, all you can do is laugh). For those of you who are having a hard time reading it, it says:

Sticking things up his nose now [notice that even specialists use qualifiers sometimes - "now" - as in "you won't believe what he's doing now"] he got a m&m up there (we got it out) [which, if nothing else, made our evening that much easier] Trying to stick food + objects up there [we spent the next few days monitoring him for both food AND objects - both individually and simultaneously - being a child of consistency, he stuck predominantly with m&ms]

Sometimes he does things that are so esoteric you feel like you're at some kind of hipster comedy show - constantly asking yourself "Wait, is this funny or lame? Shoot, I'm not cool enough to know." What was the purpose of the behavior pictured at right? You tell me. It was pretty funny to watch in stereo sound because he was making some pretty cool animal sounds (one of his buddies at school taught him the dolphin squeak). I watched this for ten minutes, at which point he quietly got up and moved on to something else.

One time, prior to diagnosis (though it is something that he still does because of the inability of people with autism to understand non-literal language), involved "U can't touch this" by MC Hammer. At the point, where the song goes "I'm dope on the floor and I'm magic on the mike" I inserted Mowgli for "I'm", to which he responded, exasperated "No, I don't no wanna be'a magic on the miiiiiike". I imagine that for someone who can't comprehend allusions or metaphor that such a claim, namely that the person is LITERALLY "magic on the mike", would be quite a disconcerting accusation.

For the most part, as a parent of a child with autism, all you can do is laugh, because most times it doesn't benefit anyone to do anything but laugh. I worried when he received his diagnosis that I would never again be able to joke or laugh about the things that he did for fear of hurting his feelings or acting innappropriately. I worried that I would have to treat him like a fragile glass sculpture. In the end, he's one part Lyons and one part Arcuri, which makes him 100% ball breaker. He laughs (and his laugh is infectious by the way) as much as any other kid his age. He thinks farts are awesome, and, like his father before him, loves to tease his mommy and get a reaction out of her. He has a warm happy heart underneath a sometimes frustrated and angry shell, and he has the most wonderful ways of showing it. After a few hard weeks of tantrums and SIB at school, we got the following note home, a note which summarizes everything that makes this condition so incomprehensible, makes Mowgli so lovable, and a note that proves just how much you have to love what you do to teach special needs kids:

He looked at me and said "I love you. I'm a good boy" today- made me cry :)

....Little bastard ;)....