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.