Shower Memories

When I went to Ethan's group home yesterday to pick him up, he was just getting out of the shower. They had to dry him off and get him dressed before we could go. My first thought was how glad I am that I no longer have to do that every night. Then my thoughts drifted to some of Ethan's more memorable shower incidents.

When he was nine, after I had finished scrubbing him down I let him stay and enjoy that water for a while. One evening he came strolling into the kitchen, naked and sopping wet, dripping water all over the floor. He went to the paper towel rack, pulled off a couple of paper towels, and started drying himself.

Intrigued, I went to the bathroom to see if I could figure out why he was doing it this way. When I got there I saw that the clean towels were still on top of the washer. I had forgotten to hang them. I was impressed at his creativity.

There was another incident around that time that was memorable but not fun. I was in the living room when I heard a loud thud coming from the bathroom. I ran in to see what was going on, and Ethan was lying on his back in the bathtub. When I tried to get him up he didn't move. For a brief moment I considered the absolutely terrifying thought of Ethan as quadriplegic. Then I saw that his whole body was shaking; he was having a seizure. I've never been so relieved by a seizure in my life.

Later that same year I came in to find that he had dumped half a bottle of shampoo out on the floor and was 'skating' back and forth on the linoleum. It was fascinating to watch but it took a long time to clean up.

And then came the most terrifying bathroom memory of all. My house has a very small bathroom. One day Ethan had a seizure and managed to fall into the tight space between the tub and the toilet. His seizure was strong enough that he had pulled the toilet out of the floor. In the process the water line came off, and there was water on the floor that he was laying face down on. I was profoundly relieved that it happened when it did. I was just about to go mow the back long and wouldn't have been able to hear it. God only knows how that would have turned out.

 

Grass Obsession

I let Ethan play in the back yard for a while before we went to church this weekend.  When I went to tell him it was time to go, he had two huge handfuls of grass.  Taking grass and shredding it to tiny pieces, then watching them flutter to the ground is perhaps his very favorite pass time.

When new people start working with Ethan the one thing I always warn them about is grass.  Do not try to take grass away from him.  That has prompted several of the very few aggressive behaviors in Ethan over the last 15 years.

Typically if he is out on the back yard playing with grass, I lead him toward the sliding glass door, and he will throw whatever grass he has over the fence into the neighbor's yard and then be ready to go.  We were running a little late so I decided to skip that part and we just went out the side gate.

That turned out to be a mistake.  Without lingering for a few minutes, Ethan wasn't ready to throw the grass over the fence.  He slowly shredded it as we walked.  When we got to church he still had a lot of   grass.  So we waited outside the church entrance and missed the first 5-8 minutes of Mass so he could finish shredding.

But I stuck to the rule and didn't try to take it from him.  He and I have got each other fairly well trained.  He mostly does what I tell him to do.  And I mostly don't tell him to do things he doesn't want to do.

Obession

I had Ethan at my house this weekend.  He did his usual obsessive behaviors.  He opened the kitchen cabinets touch all the glasses, making tiny adjustments to get them in just the right place.  He did the same thing in the bathroom.  It got me thinking about how long he's been doing some variant of this. 

I remember it going all the way back to toddler-hood.  When he was maybe 18 months old, before we (tried) putting him down to sleep, he would take a bottle while watching a Sesame Street video.  The very last thing he did before going into his room was take the bottle and put it in the kitchen sink.

And God help us all if it rolled to far under the tv shelf for him to reach.  That reliably produced a major meltdown. He couldn't calm down until we got the bottle, gave it to him, and let him put it in the sink.  It didn't count if his mom or I did it.  It had to be him.

He still has that obsessive need.  But 23 years later he doesn't have meltdowns about it any more.  Which I will count as progress.

Grasping at Dust

Ethan was very happy at church today, lots of smiles and giggles, which always makes me feel good.  He made a motion I didn't recognize over and over.  He'd reach out with his left hand and make a grabbing gesture with it, then bring it close and open his palm and look at it like he expected to find something.  There was bright sunshine coming into the row of pews ahead of us. I think he was looking at the motes of dust of visible in that ray of light and trying to grab one.

Taking Ethan to the Doctor

Something that happens occasionally when I take Ethan to appointments with the education, social service or medical systems is that they are really impressed by something I do that I don't think is all that impressive.  When I knew that valium was a benzodiazepine, one of his neurologists asked me if I was a medical professional.  I remember talking the on-call neuro resident at Children's Hospital who was really impressed when rattled of the names and dosages of Ethan meds and twice told her, no, Ethan doesn't that one anymore.  My reaction is always, well of course I know what his meds are.

Another neurologist said "wow, he's really compliant with you."  Again, my reaction was well of course he does what I tell him to do.  What else would he do?

Or the social worker with DVR (Division of Vocational Rehabilitation) who seemed almost shocked that I arrived at the appointment with all of the paperwork filled out.  I was a little shocked at the idea that everyone doesn't arrive with the paperwork filled out.

Or the school district sign language teacher being thrilled that I showed up for Ethan's sign language lesson's so that I could learn what he was learned.  That one didn't surprise me so much.  I know that I have an unusually flexible job. Lots of people can't leave work mid-morning for an hour every Wednesday like I did.

I am profoundly thankful that I was able to do all these things for my son.  I am also profoundly grateful that non-profit that runs Ethan's group home now does a lot of this and it doesn't all rest on my shoulders anymore.

Proud of the Man My Son Has Become

I was telling a friend recently about my son Ethan's annual assessment with DDD.  There was a representative from his group home who took part.  He described how mellow and easy going Ethan is, how he will eat whatever food is on his plate, how they love having him there.

I remember writing on my blog many years ago about the profound losses I felt after Ethan was diagnosed with autism.  Ethan is 25 and does not speak.  He is not fully toilet trained and needs help with most activities of daily life.  He'll never live on his own; he will always require supervision, especially with his seizure disorder.

One of the things that I said I had lost was getting to watch him grow up into the kind of man that I would be proud to have raised.  As I was talking with my friend, I remembered writing about that loss.  And discovered that Ethan has in fact grown up to be a man that I am proud to have raised.  I am proud that Ethan gets along well with his caregivers, that they enjoy having him around.  I think that Ethan enjoys being with them also.

There were a lot of things that I expected to get from moving Ethan into his group home.  The ability to go out for the evening if I wanted to.  Freedom from having to manage all his medical needs--the group home has a medical coordinator who makes all of Ethan's health care appointments, transports him to the appoint, takes care of all his medication refills, and after every appointment sends us a detailed summary of the visit.  Freedom from have to wipe his butt every day, and brush his teeth, and clip his fingernails, and on and on and on.  

I did not expect to that I would get to feel pride in who Ethan has grown to be.  But I did, and that is a precious gift.