Sunday, March 27, 2011

A Rough Day

Actually, it started off as a pleasant day.  We snuggled up under a blanket this morning and watched Curious George, we read stories, played with blocks and dinosaurs, and changed the sheets together on our beds (which Ben thinks is a big game).  We giggled and had a fun, lazy Sunday together.

Then, while I was drying my hair, I looked up from the hair dryer to see Ben's hands covered in something that definitely should have gone in the toilet.  I grabbed him and scrubbed his hands, took off his shirt to scrub the rest of him, and asked him what had happened.  "I pooped, " he replied.  "Where?" I asked him, afraid of the answer.  "The living room," he said, "The dining room.  The kitchen."  So I headed into the front of the house to see just how bad it was.

An hour of scrubbing later, I am still not exactly sure what happened or where it started.  I think he was trying to clean it up with a kitchen towel and got it all over himself, so he tried to wipe the uncomfortable texture off of his hands.  On things and furniture not intended for that purpose.  I'm sure you can imagine.

I was angry.  I was frustrated.  I was sad, because I had thought we were finally making progress with pottying after three years of training.  I yelled "No, no!" at him and said I was going to spank him.

I have never spanked him.  Never.  I personally believe it does more harm than good for any child, and I think it would devastate mine.  Ben's dad and I agreed when he was small, even before his diagnosis, that this was not the way we would discipline him.  But when I said those words, Ben's eyes grew big and he began to cry.  As far as I know, he has never been spanked.  We know he knows what it is, because he has talked about it before, but he has said he has not been spanked.  Daycare and school don't spank, and my parents have respected my wishes concerning it; however, he has been around enough other kids to have surely heard about spanking.

Regardless of what his knowledge of spanking might be, his little face crumpled in terror, so I took a deep breath, and picked him up and hugged him instead.  I repeated my mantra about what to do when he needed to potty and reminded him of his social story and picture poster for pottying, and then put him in his room and made him stay there while I cleaned up the mess.  That upset him enough, as he screamed and cried and asked for his daddy for the first ten minutes or so.

I scrubbed and cried.  I am glad I didn't spank him.  It wouldn't have helped.  His pottying issues are beyond his control to an extent.  He is making progress, but we do have set backs, although today's set back was pretty awful.  And when I was finished and went into his room to get him, he immediately told me he was sorry and he loved me.  I, of course, told him I loved him more than all the stars in the sky.  We read his pottying social story together, and I think the trauma is behind him, though I just heard him tell one of his little astronauts not to poop in the space ship.

I don't know that I am over it, though.  I'm over the mess.  It was bad but not completely unprecedented; I'll just borrow my mom's carpet cleaner again.  I am worried about my initial reaction.  I am worried that I am not strong enough to calmly handle bad incidents.  He deserves a mom who can keep it together and be there for him no matter what.  I am trying, but I don't know if it's enough.

Friday, March 18, 2011

The Night the Lights Went Out in the Bathtub

Ben has always enjoyed a warm bath and tub toys as part of his bedtime routine, and because I have found it helps him unwind and go to sleep more easily, I try to let him have some extra tub time.  This is usually one of the easier parts of our day; however, one day last week this was not the case.  Not at all.

At about 8 something pm, Ben was in the tub happily playing with ducks and boats, and I was sitting on the bathmat with my back against the wall trying not to fall asleep when it happened: the lights went out.  Ben immediately began shrieking hysterically, "It's dark!  It's dark!  Fix it! Fix it!" so I scrambled to get up (smacking my forehead on the bathroom door in the process) and grabbed him out of the tub.  It was indeed dark, pitch-black.  All of my lights were out, and my neighbor's many porch and side lights were out while his boxers barked their heads off and my son screamed like a banshee while flailing his arms and legs.  He was wet and weighs 42 pounds, and I was terrified I was going to drop him or fall with him and break a bone and then where would we be?  Both of us screaming on the floor in the dark and not a thing to do about it. 

So I gripped him as well as one can grip a sopping wet, flailing about 5-year-old and inched out of the bathroom, through my little twist of a hallway, and across the dining room, being as careful as I possibly could not to smack his head on anything, when I hit my toe on the door facing.  I yelped, then sucked it up and kept the string of obscenities inside my head so my son wouldn't repeat them, and then we continued inching our way into the kitchen while he continued his screaming and twisting.  We finally found the rechargeable flashlight in the kitchen, and I managed to hold it, Ben (who would not let me put him down), and my cell phone and called the electric company using the magnet on the fridge.  The outage had already been reported, and when I looked outside I knew why: there was no light.  Not anywhere.  Not on the Interstate that runs past my house, not as far as I could see.

I tried not to panic or show Ben that I was a little freaked out myself, lit candles, and then took the flashlight to the bathtub to finish bathing him, and then gave him the flashlight to try to quiet the shrieking and calm the panicking.  I resolved to buy more flashlights while helping him dress in his jammies as Ben aimed the only light directly into my eyes the entire time, and we headed to the living room to call his dad to tell him goodnight and read our bedtime stories by flashlight.

Ben stopped screaming and crying, but he would not go to sleep.  He would not.  He continually talked about how the lights were out and the electric company needed to come fix it.  Ben is not much of a question asker, but he repeatedly asked when and who would come fix the electricity.  When?  Who?  When?  Who?  He was very anxious about it, and nothing I tried calmed him.  Not stories, not the weighted blanket folded in half, not back rubs, not snuggling in my bed, not singing.  It didn't help that the house was completely silent.  He was very distraught by the whole event.  I was trying very hard to remain calm and patient but the whole time I was imagining a truck flying off the Interstate in the dark and landing in my living room, so it was very possible he could sense my anxiety.  I swear he has antennae for that.

About two hours or so after the electricity went out, it came back on.  I had enough fore thought to turn off everything except the porch light I leave on anyway, and only missed one lamp in the living room.  But as soon as the porch light came on, he sat straight up in the middle of my bed (having still not been to sleep yet) and anxiously said, "They fixed it!  The lights are back on.  When will they go back off?" and he said it over and over.  He didn't shriek, but he seemed almost as distressed as when the electricity went off in the first place, which confused me.

I'm not sure if this was so upsetting because of his sensory issues or because of the abrupt change in routine or both, but that child did not go to sleep until after 2 in the morning.  And when the electricity went off again two nights later at 2 something a.m., I woke to him shrieking and he did not go back to sleep that night, even when it was fixed an hour later.  Again, he was distraught and no amount of reassuring and snuggling could soothe him, even after it was all fixed.  Zombie Mommy returns.

We are now the proud owners of  a variety of flashlights stationed all over the house just in case, but my main concern is how frightened he was and how stressed out he became over it.  He gets obsessive sometimes, but even after the problem was solved he was still just as distressed as when the lights went out.  And now, a full week later, he talks about it regularly, especially at bath time, and he is now afraid of the dark. 

I don't know what the answer is to this one, and I didn't see this kind of problem coming at all.  I think it could upset any kid, but he is having an awfully hard time getting over it and is still afraid of it.  Nothing bad happened (not to him--just Mommy) and I did my best to calm and comfort him.  It might just take some time, and I do think that he will make peace with it eventually, but I sincerely hope we don't have to deal with it again for a long, long time.  Like never.  Never would be good.

Sunday, March 6, 2011


There is a show on NBC on Tuesday nights called "Parenthood".  I have only seen about 1&1/2 episodes of this show, and most of the drama in it is uninteresting to me.  However, there is an 8-year-old character on the show, Max, who has Asperger's Syndrome, and that interests me a great deal.

In the episode that aired February 22, all I saw was Max being told that his social skills trainer would no longer be able to work with him.  It was an abrupt transition that he was not prepared for in advance.  His reaction was one of alarm and anger, and I thought that seemed about right for a kid on the spectrum who has to deal with a sudden change in routine and was losing a familiar person.  We have gone through this many times when, for example, a daycare teacher quits or the paraprofessional at school changes that Ben has bonded with; Ms. Ashlie, Mrs. Watson, Mrs. Finney, and Mr. Phillips are all still fondly remembered and come up in conversation and the running monologue that Ben has.

Last Tuesday's episode hit home a lot harder.  After a scene where Max insistently refused to leave the house without a particular pair of shoes, his father desperately wanted to have fun, uncomplicated father/son time, so he let Max play hooky (which Max argued about repetitively before giving in to the routine change).  It seemed to be going well.  They went to an amusement park, and Max talked obsessively about a certain roller coaster, including all of the engineering and speed specifics.  His dad promised him they could ride as many times as he wanted, they got buckled in, and then it happened. 

An announcement was made that the coaster needed repair and would not run for the rest of the day.  Max melted down.  He screamed, cried, and was genuinely distressed, not just disappointed.  He screamed that it was unfair and that his dad had said they could ride it.  He could not comprehend that it wouldn't work when it was supposed to.  He ran off and when his dad caught him, he was sobbing and shaking.  Everyone stared, the dad tried to calm him and comfort him to no avail, and in it all I saw my son.

That break down is almost exactly what happens with Benjamin.  It is not a tantrum.  It is an inability to function and accept the current situation.  It is not about being a brat.  It is about the fact that Ben is unable to process, accept, and deal with abrupt changes, transitions, and unexpected occurrences.

I expected Max to have issues with the noise and the crowd, as sensory issues are a hallmark of Autism, but I didn't catch any.  That melt down was spot-on, though.  It was terrifying and overwhelming to the parent character, who portrayed the same kind of helplessness and frustration I often feel while scrambling to calm my son down and help him cope.

Something else from that episode that struck a chord was the parents' attempt at discussing Asperger's Syndrome with Max.  He walked in on a conversation between the father and his brother (I guess) where the father blurted that Max has Asperger's.  Max appeared in the doorway, demanding to know, "What's Asperger's?"  The first time the parents tried to explain it, the mother cried the entire time, and the father was vague in answering Max's questions.  The second time they broached the subject with him, they talked about the specific issues Max has that are related to AS (not making eye contact, not being able to read social cues, needing extra help with those issues) and also his strengths that are a part of the syndrome, like his good memory, extensive knowledge about subjects of interest, and his intelligence.

I have often worried about how we will broach the subject when it is appropriate for Ben, and I think the second way was a fairly good model.  Right now, he doesn't know about it.  He doesn't know that his speech therapy, occupational therapy, and PPCD class are anything out of the ordinary, and he doesn't know that the way he does some things is viewed as peculiar by others.  I wish it could stay that way, but I know it won't. 

I know there will be a time when we have to have those hard conversations.  My main concern is that I don't want Ben to feel inferior or as if something is wrong with him.  I want him to feel valued, and loved, and capable of anything.

In the meantime, I think the show is doing a decent job of portraying a child with Asperger's, and I am glad they are doing so.  I am especially glad the character has strengths and is seen by his parents as remarkable and special, because that is exactly how I see my Ben Bear. I just hope I can help him see that in himself.