My Autistic Boy And Other Adventures In Fatherhood

As many of you know, I spent the past week battling a pretty nasty cold.  I can’t decide if it was just a nasty cold, or the fact that it is 90 degrees and 90% humidity outside…. which just made it feel nasty.

I was further bummed because my big, favorite race of all my road races, the Alpharetta Old Soldier’s Race, was this past Saturday.  I pretty much aim my training so I can peak during it for my best 10K time of the year.  With not sleeping well and the cold, I had mentally prepared myself for not the best time of the year…. but 5K into it, I just couldn’t get my breathing right and my stomach felt weird and I started feeling that twinging before a calf cramp comes on…but I was going to power through and finish….

Until I was passed 3 miles into the race by the leader of the 10K race (they changed the route, I’m not a fan of the new route, but they didn’t ask me….)…  I realized I was in my head and not watching my times.  My time was crap.  It was a 35 minute 5K at that point…way off my averages.  At this point, due to these facts, I just did the 5K half and called it a day, no reason (A) – getting sicker or getting hurt and (B) – struggling beyond either of those to just be stubborn (some days you just don’t have it).  A real bummer.

I kind of moped around on Saturday; I wasn’t in a bad mood – nor was I in a good mood. I wasn’t going to let anyone else pay for my bad race or cold.  Lets see – two of my four 10Ks I ran this summer I’ve been sick for…so my summer training schedule really didn’t work as planned. Mopey Jerry…

Then, on Saturday night, after we went out to dinner, the family is watching Disney channel and Demetrius just comes over to the chair I’m in, and gives me a kiss on the cheek and a hug and snuggled in next to me.  I lapped that up guys.

Demetrius, for an autistic kid, is very touchy feely.  But he is mostly that way with Kim (in a lovey dovey kind of way).  She’s like a secondary ‘woobie’ for him, and like all kids, needs that Mom’s touch to feel comfortable at times.  I’ve often felt he needs that from her on many levels, and when he comes to me, he needs a bit more of the wrestling, rolling around sensory integration touch. It has always worked well, this somewhat seperation of church and state, so to speak – but I have not gotten a lot of hugs and kisses from this boy over time.

So when I do, I just light up.  The weird thing is that while I was being mopey, I was kind of trying to hide it. Maya and Kim didn’t really pick up on it, but clearly, it seems, Demetrius did.  I swear – this kid has a sixth sense some days, and Saturday he seemed to just sense giving me a hug and kiss, and then sitting in the chair with me, was the right thing.  

My cold was gone when I got up on Sunday morning.

So a bad Saturday became a good one with a little peck on the cheek.  So he got extra wrestles and throws in the pool on Sunday, that’s for sure.  So my mopey weekend kind of really ended up being a great one, on a couple of levels, no?

A nice moment watching TV between Maya and Demetrius

I had a race yesterday morning, afterwards I met Kim and the kids at IHOP for breakfast.

Demetrius had not had his medicine, so the clinking, clanking and white noise of the world’s busiest breakfast spot made getting through his pancakes more than a bit tough.

Of course, as always with the boy, a few bites in and he needed to head to the boys room. I took him and he hit a stall and began singing his song as he took care of business.

At the urinals was a boy with a cane hanging from the counter.  A couple of years older than Demetrius.  He had cerebral palsy, but he was going to the bathroom all by himself.  He had to drop his drawers down below his knees to keep his balance.  And when he was finished, he took a good minute plus just to pull his drawers back to the appropriate position.  He wobbled as he tried to keep his balance, and when finished, he grabbed the top of his cane and pulled himself over to the sinks.

He was focused, Demetrius was singing, and I was closely watching this boy.  He leaned on his cane and took one big step left.  He had a bit of a hard time turning the faucet on….he did, and then he went for the soap.  Now imagine having minimal control over your hands, which of course, are almost balled up - but he managed to get his palm of his right hand still - and with the other push the buttom to get soap.  I took a few long seconds - but he was successfu.

But my guess - it took a good three minutes to wash his hands.  Because he had such poor motor skills, it just took everything he had to wash the hands and between and around each finger.  He did it.  Then he had just as many problems with getting a paper towel.

I would say an exercise you and I take advantage of, and pay no attention to, each time we do it, took this poor boy about five minutes.  By then Demetrius had come out of the stall and washed his hands and we were heading back to the table.

I wondered, how many practice sessions had this boy had where he had wet himself trying to pee on his own, or cut his fingers trying to get soap out of the dispensers, or just for some reason or another, failed at peeing and washing his hands?  How frustrating was it for him, how depressing trying to just learn how to do this one simple exercise….but he was doing it at a restaurant by himself - and his parents were out there in the throng of tables with bacon, eggs and toast, trusting he could do it himself now.

I was inspired.  His body is as hard to work, I think, as Demetrius’ mind is for him at times.  Yet he’s mastered this enough to say he can do it himself.  Hardly pretty, but functional, and he should be proud of himself for doing it.

While I’m typing away here, Demetrius is in my office watching Happy Feet, repeating as he watches it, some former episode of Spider Man.  However, I am thinking that in two years, maybe he’ll be doing things on his own that I can’t imagine now, no matter how hard, he’ll be doing them, and I won’t be standing over his shoulder, worrying ceaselessly.

It wasn’t the good time at my race, or anything else that had me smiling (endorphins included). It was this boy, in the mens’ room of IHOP.

Go figure.

Monday I had my first 10K of the summer.  Soccer is over for the kids (for the summer) and now I can focus on running races and long runs with the running club on weekends. My battery is charged, as they say, and I am feeling very good about this season.

One thing about runners at a race, I would say almost uniformally they are morning people…like me!  So you get folks that are excited about a race, and chatty, beforehand as everyone congregates and stretches out, etc…like the dude who parked next to me.  He won the masters event category in the race and was a 1984 Olympic marathoner. You would have never known it because he was just a nice guy that was talking about how he forgot to bring a cup of coffee on the way and he was dying for a small cup of coffee (clearly wasn’t affecting his ability to burn rubber once the race began).

Another dude and I (I think he is actually going to start running with the running club on Saturdays) chatted about Autism.  I run races, exclusively, in my Autism Walk tee shirt from 2007 (we all have our reasons to run, I have mine, and this is it).  His son is non-verbal, and making strides.  We spoke about the costs of therapy, where are the lines with what we are willing to pay (I’ve blogged endlessly about this subject) and he has two other little ones at home (not on the spectrum).  Once it got close to race time, we separated and headed off toward the line. 

One of the ladies in the running group had a boy in her pre-school class that’s on the spectrum, and the parents wanted him mainstreamed, while the school district pushed back and wanted him in a special needs class.  We traded emails, and we discussed that the boy was mainstreamed, to be pulled out for ‘specials’ at the start of the year. I’m glad for them.  At least they’ll get to see where the lines are….

She actually had a friend she didn’t know was running and went to chat with her quickly before the start of the race, so I was in the crowd waiting to begin…and felt a tap on my shoulder. Just a woman waiting to race.  She said she just happened to overhear the two conversations about autism I had, she also teaches pre school in a different suburb. 

“Do you think autism is at a pandemic level?” (One of the discussion points I had that morning…yes, heady stuff for 6:50am before a race).

Jerry: Yes, that’s my personal feeling when you take the girls out of the equation and the numbers drop to 1:75-ish instead of 1:150 with the girls in the mix.

“Do you feel desperate?”

This just shook me.  But it was a bit of a delayed reaction.  My initial answer I gave her was, “No. My son is making his way through mainstream classes, and it is a day-to-day, year-to-year thing with Demetrius, but I don’t feel desperate.”
But while running with the headphones on…

I would change that answer, I think.  First, it is a word I’ve never associated with my feelings or thoughts on autism with Super D.  ‘Desperate’.  I think of this word in some sort of short-term context.  “I’m desperate to hear if I got into XXX college.” Or, “I’m desperate for a cup of coffee.”  But in terms of autism and Demetrius…yes, I think there was a time I was desperate.

It wasn’t to get him diagnosed, because, hell, we pretty much knew by then. But I felt desperate as I fought with insurance companies (and came home to Kim on the phone with the insurance carriers).  I felt desperate, I think when we went through our first IEP experiences…

So desperate is tied to new experiences – therapies, schooling, dealing with insurance companies.  Because we don’t know what the other side may or may not look like, how will the result impact all the other things we’ve built around this kid, etc…but I don’t feel desperate about him.

I really have a hard time to thinking about desperate in the group sense too.  The word feels personal to me.  Would Demetrius’ situation be as desperate to someone that had a parent who had a stroke in their teenage years and was housebound that point forward? They’d have that experience of a hard life and maybe having an autistic child and dealing with it (I’m sure, still painful) would act/feel different than we did.  What is a desperate feeling for me may be something that someone with thicker skin just shrugs off, because they’ve been around the block.

The autistic community seems to have moved away from desperate pleas too…we are legit and this isn’t some ‘unknown’, the unknowns are in the causes and ‘cures’, and the dollars for research are now there – and I don’t think the bucks will be going away any time soon.

There may be some desperation among school administrators across the country on how to accommodate the influx of autistic children (if a pandemic) and how to train the teachers…especially since each child on the spectrum is different with different triggers and abilities, etc…

My final thought here is around what’s next for us and what could I feel desperate about?  Hard to tell – that’s the experience thing I referenced earlier.  What pops up for me is Demetrius being picked on by other boys, that’s something that I just think will happen, and being the type of kid I was, it will hurt even though my belt will be tightened for it.

The other place I can see the word applying would be around school, if he regresses or just gets to a point where he ‘can’t’ mainstream anymore, for whatever reason (educational, social, etc…).  First grade was such a good year (I’m fighting the cynic/skeptic in me that this might have been the highpoint before academics get too challenging), I’d like to have more of those and less of those years of negotiating we’ve had in the past.

Desperate.  Just a word, no?  So many thoughts one can have around it running a 10K? ☺

Yesterday Kim and I caught up with a few couples we knew a long time ago, when we were newlyweds living in my parents converted garage.  One set of friends I knew professionally from work, the second set I knew the husband and wife from Jr. High. 

Both have had some hard times in their lives.  After catching up, I found one that grew up in a 2 bedroom and 2 bathroom apt. owns a couple of insurance companies and financial services consultancy. He has a great wife (I’ve known her practically as far back as I can remember) and four kids that attend the school my sister teaches at.  He’s building a new house and seems completely happy.

The other buddy is a guy I’ve crossed paths with throughout my college and professional career and bounce ideas and questions off of…he’s built a house south of the city here in Dallas that is of his dreams….his step-daughter is about to graduate from high school and he’s got everything he could want in his life. He seems, as they say here in Texas, “blessed”.

I couldn’t be happier for these two guys.

Sometimes, it isn’t just our autistic kids that live in a bubble, we do too.  We spend our time thinking about therapy and IEPs and…well, our lives. We are very focused on ‘us’.  It takes a lunch and a dinner with people you don’t regularly see to bring you out of your bubble….and you see just how great some lives have turned out for people who have had difficult times. It helps give me perspective on what I’m going through with Demetrius and my life…that often, the hard times lead to better times…and I’m not the only guy in the world that has/had some life issues to work through.  That makes me happy…and I don’t know if it has a flip to do with Thanksgiving or not, but it makes me breathe a little bit easier that me, and all of you, aren’t the only ones in a boat like this…and have come through okay.

——

I also had a race this morning, I didn’t come anywhere close to the time I had hoped to run it in….however, I am still thankful that I can run these races. After a number of ankle reconstructions and doctors telling me all the things that I can’t do…I really appreciate the fact that I can and will do this (among all the ’stress release’ factors that running enables in regards to autism).  My times aren’t super fast, but that’s not the point, the fact is that I’m finishing strong.

Maybe all of this ties to the fact that I should be a bit more thankful in everything in my life, regardless of how hard parts of it are….

Happy Thanksgiving ‘ya’ll’ (I am in Texas right now…)

(And I ran 6.2 miles in 57:13, that’s still not a bad 9.21 minute mile..)