We’ll call him Billy

The stop sign just up the street from our house does more than control vehicle traffic. It controls a little piece of my kids’ lives. A stop sign should add an element of predictability to the cars passing by. It should slow them down. It should make drivers more aware of pedestrians and the kids who swarm the neighborhood.

It doesn’t.

If anything it makes traffic less predictable. If we lived on a straight stretch of neighborhood road, with no impediment to travel at all, you could count on fewer variables. In fact, it would be quite simple. Cars would either be traveling fast or slow. With experience, you could judge relative speed and ETA – not that you’d ever want to take the ETA for granted.

The stop sign makes things a little too interesting. It means some cars MIGHT stop. It means some MIGHT slow down a little. It means some MIGHT do the impatient, yet afraid of a ticket, “roll-through.” It means some MIGHT shoot through the intersection like a stray bullet in a shootout.

Now imagine you had an autistic child – even high functioning like Beth. With her attention issues, how would you feel about her stepping from the relative safety of our driveway into the zone of mortal unpredictability that is a neighborhood intersection? The stop sign, combined with her Aspergers, keeps Beth on our side of the street by decree. Violations are dealt with swiftly and severely.

Fair or not, this paranoia rubbed off on Adam.

Our intelligent six year old boy is deprived the opportunity to explore his habitat. Kids come to find him, not the other way around. When kids get bored of our yard they move on, but Adam doesn’t.

We are terrible parents.

There’s one kid who came around a lot. He’s a kid Adam likes quite a bit. He’s older than Adam, but you couldn’t tell from his behavior or apparent education level. Billy is autistic and doesn’t function as well as Beth.

Billy lives with both parents but they both don’t seem to be around much, or so we hear. He’s watched mostly by a baby sitter – a neighbor who’s been willing to help the family. I’ve talked to his mom on the phone several times, and Cheryl and I have spoken with the babysitter in person. Many of the kids in the neighborhood met them too, and their opinion includes words I can’t or won’t repeat here. I won’t dignify their comments with any further details, other than to say some are really bad. You need to know this much to understand my feelings about Billy and the neighborhood.

I only know Billy’s parents by the sound of their voice. They’re rarely around when we are, working long hours. I wouldn’t be surprised if it was to pay for Billy’s care. I know first hand a child with special needs can be a challenge – under the best of circumstances. I also know how cruel kids (and adults) can be to someone who’s different. I may not have much first hand knowledge of Billy’s home environment, but I see how the neighborhood treats him, and poorly is putting it kindly. My untrained eye sees a good kid at heart, in the process of having that goodness beaten out of him (if not literally then figuratively).

I tried to show the patience and kindness he may not get from the rest of the neighborhood, while showing him respect by speaking to him as I would an adult. I tried to make our house a safe haven, a place where he could come without fear of judgement, based on a label purchased in bulk and carried like a yoke. I believe I succeeded at both.

Like I said, Billy seems like a good kid, so it’s not hard. His mother says Billy doesn’t play with other kids, he plays in the vicinity of other kids. For some reason he does play and interact with Adam. In fact, unless something comes up requiring problem solving, written language, or interacting with anyone but Adam, Billy seems almost like any other kid.

I’d been letting Adam play out in the front yard with Billy, giving him more freedom to explore the neighborhood on this side of the stop sign.

I haven’t met a kid who likes rules, and Billy is not an exception. He was constantly asking if Adam could come across the street with him to his friend’s house. I’m a mean, terrible parent, so I always said no.

Billy and Adam were playing on the front porch when some neighborhood kids rolled past. Adam and Billy knew most of them. Adam was friends with most of them. Adam makes friends pretty easily. Billy does not.

Before I knew it, Adam followed Billy and his other friends across the street, and the trouble was just starting.

Despite deposing all involved (except Billy, who wasn’t available), I still don’t know exactly what happened. There were some rather fantastic, inconsistent stories, but Adam and his friends tell one consistent story:

Billy tripped over a toy laying on the sidewalk, blamed the other kids, and blew up. He swore at the other kids. He lashed out physically at a couple. He told Adam he was going to call the police on him.

Like I said, I don’t know what happened first hand, but Adam came home hysterical, worried the police we’re coming for him. All of the other kids said Adam wasn’t even around when Billy fell.

I want to be understanding, but I’m disappointed in Billy. It’s not just the fight I’m worried about (Billy never touched Adam), but both he and Adam knew I didn’t want them crossing the street. I know it won’t be the last time Adam faces pressure from his friends to do something he shouldn’t (like walking off without permission), but Billy is four years older than Adam, and I wonder if it creates more pressure.

Since then Adam and Billy reconciled. They weren’t allowed to play out front anymore though. However, they played together like nothing happened… for a while.

Then Billy stole something.

At first we weren’t sure and I wanted to give him every benefit of doubt. A six year old and an autistic kid do not make the best eye-witnesses. However, it became apparent Billy probably did steal it, and it was pretty expensive – something we couldn’t ignore. We haven’t seen or heard from Billy in a few months now. Cheryl told him he could come back when he returned the item, told us what he did with it, or give us some idea where it might be.

He hasn’t come back.

I feel terrible. What if he didn’t take it? We can’t be certain. We didn’t see him take it. He didn’t admit to taking it. Adam says he took it, but he’s six. He usually accuses someone of stealing any time anything goes missing. Beth said Billy was playing a hiding game with Adam – and Adam was not a willing participant.

I feel like we’re just as bad as the rest of the neighborhood.

There’s a balance to be met, and I’m not sure where it is. We have a responsibility to our families as well as our community. Billy is part of our community, but without that sense of balance I’m lost. I’m haunted by the thought of our community discarding a lost child.

I wonder if it’s time for another chance, or a first chance to prove we were wrong to assume the worst.

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Interpreting Beth

Many of you know Beth has high functioning autism. Some of you know Beth. A few of you are familiar with Beth’s low tolerance for discomfort of any kind, and the hypochondria that accompanies it.
More than once we’ve played the town’s folk as Beth cried wolf, only to find later the wolf was real – and caught up to her.

When she was a newborn/toddler her way too frequent complaints turned out to be urinary tract infections brought about my a birth defect requiring surgery – and removal of half a kidney.

As she got older, the constant stomach pains turned out to be something we’d later learn was a classic symptom of autism: she didn’t “go” when she needed to go. As a result, she became spectacularly backed up – surprising her doctor with her steel resolve in the face of pain.

It all played out so contradictory, I was completely lost when it came to Beth and illness.

Fast forward to this morning. No I take that back. Fast forward to this year. Beth’s been spending a fair bit of time curled up on the couch in pain. A few specialists gave us their answers, and their advice seemed to work… for a while. We’ve been keeping a closer eye on her diet and exercise. But we still occasionally have mornings like today – Beth impersonating a fetus on the couch.

Sometimes she makes a miraculous recovery and goes to school. Sometimes it doesn’t last and one of us makes the trip to her school to pick her up. Other times we go to the doctor for a quick check and a new piece of advice. Sometimes it’s behavioral advice. Sometimes it’s medical.

This morning Beth was on the couch again. We decided to take her to one of several doctors again.

Are you familiar with the phrase, “one more thing?”

Sometimes there are legitimate reasons for anxiety and depression.


Summer’s end

Beth starts school on Monday, and you know what’s crazy – besides the fact that we’re only half way through August and school’s already starting – I didn’t know.

That’s right, I’m such a lousy father I didn’t know when school started.

Well, today I’m feeling charitable. I like to think I’m just forgetful. Forgetful parents aren’t necessarily lousy, are they?

Anyhoo, I’m of a mind to see this as a great step forward for Beth. Not that her father didn’t know, but that I wasn’t worrying about it coming. Dreading is actually a better word.

You see, when most parents are rejoicing in school’s return, I’ve always dreaded it. School was a time of suffering for Beth, and I suffered with her. Asperger’s made Beth different, and school kids eat different for lunch. Of course, this was before we knew Beth had Asperger’s. For a couple years we just thought she was eccentric. We thought it came in the package with a high IQ. It took a while for us to realize how different. She was our only child, and she was cursed with shy parents (me anyway). I don’t do well with people myself, so I lacked another point of reference.

Then we went through years of therapists, doctor’s of varying specialties, and finally a psychiatrist or two.

It wasn’t until someone got us in to see the department head of psychiatry at the children’s hospital in St Pete, a year and a half ago, that we learned a form of autism was the likely candidate. It wasn’t until we lucked into a study with the local university that we saw any therapy that made a difference. It wasn’t until the psychiatrist recommended a small, private school we’d never heard of, which had success with high functioning autism kids, that Beth found respite from the bully squads of public school.

She was among her own, and she was as happy as I’ve ever seen her.

The neighborhood kids can be no better than the ones from school. Their parents seem to worry Beth’s quirks will rub off on their kids, so they don’t let her inside to play. It’s only at school that she’s among friends.

So you see, the school year isn’t just good for Beth – it’s a blessing.

So I think I get a pass for forgetting the first day of school. Now it’s just another day.


When the autism spectrum wins

After a month of hunting down posts about Beth’s childhood, my mind wandered to our other child. How has he fared through all of this?

I remember first thinking in terms of Beth’s disorder “winning” during a Skype therapy session for obsessive-compulsive disorder. The therapist sought to personalize, yet disassociate the disorder from Beth in a way. She tried to objectify it – make it seem separate and distinct, to make it into something for Beth to fight. It also served to lift some of the shame from her shoulders. “This isn’t you Beth. This is OCD, and we can make it go far away. It may come back from time to time, but it’ll get easier and easier to send it away.” In the case of OCD it kind of worked, with a LOT of effort and tears. There were exercises which helped her to overcome some of the distinguishing characteristics of OCD (in her case), while not letting it define her.

Asperger’s Syndrome, in the larger context of our family, has been another animal. One of the ways I fear it’s won is the attention we’ve shifted from our wonderful son to endless therapies, doctors, and counselors with Beth, before and after diagnosis (but mostly before). You may have noticed the daily posts leading up to Beth’s thirteenth birthday – my sort of mock countdown to the end of her childhood, with a few re-posts from the early days.

It got me to thinking.

I don’t have nearly as many posts about Adam’s early years. We’re still in them so I still have time, but still – not a whole lot of Adam in here.

It’s not that Beth isn’t wonderful, or Adam hasn’t been noteworthy, but damn it all if we haven’t fallen into a tradeoff trap.

There are a number of harmless explanations just dying to dive off the tip of my tongue. Some of the magic of raising a child may seem more routine the second time around. Beth had the stage to herself for seven years, while Adam has to share it with a veteran of the theater. There are a bunch more where those came from.

They all sound like reasons, but even to my mind they sound more like excuses. Yet somehow, deprived of his share of attention, Adam has thrived. Even though I haven’t read to him as much as I would have liked, he’s been reading on his own for almost a year now – and he doesn’t start kindergarten until this Fall. He writes notes in a little notepad, sounding out the words. How many times have I heard him say, “Wait! I just want to get this down before we go!” It’s precious and hilarious.

Maybe Aspergers hasn’t won, not entirely. Maybe it’s beaten me down a little, but my little boy is a little stronger.

It surely hasn’t bested my daughter.