So what is it like having a child with autism?

So, what is it like having a child with autism?

I get this question a lot and actually like it when people ask. Unless a person has significant contact with someone on the spectrum he/she doesn't really understand what an autism driven world is about. Saying that, it isn't always easy to convey what having a child with autism is like. After much consideration, this is what I've come up with -

For me, having a child with autism is like living with an alien from another planet. I call him the "reluctant astronaut (R.A.)" because he really didn't want to come to earth, had absolutely no interest in this space mission. As a result, he didn't pay much attention at the briefings prior to the mission so doesn't know anything about Planet Earth - nothing about language, customs, or Earthling niceties in general. In fact, he is so disinterested in Earth that even though he was sent here, he has absolutely no desire to assimilate into Earth society. Meaning he still doesn't give a rat's ass about Earth mores.

That's also how I "explain" things he does that are pretty much unfathomable to me. For example - for a certain time period he liked to sit in the toilet. No, not on the toilet but in the toilet. I reasoned that on the home planet the toilet is a jacuzzi. Although eventually we managed to break him of this habit, the jacuzzi explanation popped again during potty training when the R.A. demonstrated not only an aversion to the toilet but would have all out nuttys when placed on one. He was probably thinking, "Poop in the jacuzzi? What is wrong with you people? Miscreants!" That's what he would say if he could speak English or any Earthing dialect.

For a time I was also convinced that not only was he a reluctant astronaut but was actually an alien cat that somehow ended up in a human body. It does make sense -

Cat

Has to everything his way

Reluctant Astronaut

Ditto

Cat

Don't touch me!

Reluctant Astronaut

Ditto

Cat

Doesn't speak human language

Reluctant Astronaut

Ditto

Cat

Doesn't wear clothes

Reluctant Astronaut

Ditto (Well, would if he had his way)

Of course I don't really believe my son to be a Reluctant Astronaut.

But sometimes it sure makes sense!

Disclaimer: Although I sometimes describe things about life with my R.A. in a humorous way, please understand that I am not laughing at him. He is my son and I love him very very much. I come from a family that had its share of challenges and I learned from a young age that laughter is powerful. A situation cannot completely hurt you if you are able to find humor and laugh at some parts of it. So that's what I do. And I don't use humor solely with the R.A. My daughter was born with a heart condition that required immediate surgery. (No, I don't make good babies. They come out broken.) She was whisked away by ambulance to the hospital in Boston. It was all unexpected and traumatic. A nice young intern came to speak with my husband and me and was re-assuring us that nothing we had done caused the baby's condition. The stress and sorrow were overwhelming. When the nice young intern concluded I turned to my husband and said, "See, I told you it wasn't from all that smack I did during my pregnancy." The intern froze and then let out this huge belly laugh. Was I appropriate? Probably not. But I had to do something to relieve the stress. Astronaut life is stressful so find the laughter where you can.
And as G.K. Chesterton said, "Humor can get through the keyhole when seriousness is still hammering at the door."

Wednesday, September 19, 2012

A Loverly Day for a Picnic - Or a Hangin'


This afternoon the R.A.'s school (Institute of Earth Indoctrination) held its family fall picnic.  As expected the R.A. was thrilled by the occasion and had a terrific time - not.  Well, unless scowling and yowling dolefully yet angrily means one is having the time of one's life.  I don't think that is even the case on the home planet.

We knew it would be a bumpy ride when the R.A., led by one of his teachers (captors), came out of the school building glowering furiously while simultaneously caterwauling and covering his ears.  When my husband and I appeared the R.A. looked even more hacked off.  If there was a speech bubble over his head it would have read, "Great.  There's a tent on the front lawn when clearly there shouldn't be and it's stuffed with all these weird strangers and now these two, weirder and stranger than all the rest, arrive.  What fresh hell is this?"

As it was so close to "Grandparents Day" (another Hallmark manufactured bogus holiday) the school encouraged families to invite grandparents to the picnic.  My mother promptly generated three excuses as to why she could not attend. One was actually valid (Sorry, Mom, we know you do speak English, fluently, so lapsing into faux Bulgarian was a waste of time as was feigning death) so she got out of it.   Unfortunately my husband's parents were not as quick with their excuses and got roped into the picnic.  At least they got free meals out of it and the weather held.  Happy Grandparents' Day!

Grudgingly the R.A. sat with us, intermittently yowling and scrupulously avoiding eye contact.  If anyone did attempt conversation he would growl angrily or ignore the remark and energetically peer around the person as if to say, "Whatever is out there is much, much, much more interesting than you.  Oh, look!  A tree stump!  Riveting!"

Once my husband and I determined we spent enough time "visiting" with the R.A. to satisfy school staff who were probably grading us on our interactions with our son (no doubt we failed spectacularly), we left the food tent and took the R.A. outside.  The R.A.'s favorite activity at the June picnic was the bouncy houses.  He so enjoyed jumping that he refused to come out of one of them when his turn was done and my husband was forced to climb inside and wrangle him out.  Luckily for us it was about 100 degrees and 93 % humidity that day!  Therefore, based on this past experience which indicated to us that the R.A. liked the bouncy houses, we took him to one of the bouncy houses.  As we approached the bouncy house the R.A.'s bitter caterwaulings transformed into caterwauls of joy.  Gleefully he removed his sneakers and in his excitement almost removed his socks and pants.  The R.A. then launched himself onto the attached inflatable ramp that leads into the bouncy house.  And then he stayed there, refusing to actually enter the bouncy house.  The R.A. intended to spend his bouncy time on the ramp not inside the house.  I don't know if he saw it as his own personal piece of bouncy real estate or suddenly had a yen for outside bouncing but the R.A. desisted entering the bouncy house.  Obviously my husband and I figured it must have something to do with that particular bouncy house so we tried the two other bouncy houses.  But no.  The inflatable ramp preference was assigned to all the bouncy houses.  My husband and I were desperate to get the R.A. inside a bouncy house as we thought (stupidly) that once we could get him inside the bouncy house he would recall that he liked it.  The R.A., however, would not cross the threshold of the bouncy house entrance, firmly staying on the ramp.  At one point he was crouched on all fours with his head at the entrance and I barked at my husband, "Just push him in!"  I believe that the fact that we were surrounded by school staff intimidated my husband and he refused.  I was so frantic that had my hands not been full of sweaters, water bottles, and the R.A.'s backpack, I would have given him a firm shove.

Much to the R.A.'s dismay we did not allow him to remain on the ramp.  He was unconcerned that he was blocking the way for the other children to enter and leave the bouncy house.  I guess the R.A. figured that was their problem.  Finally we had to physically remove him from the bouncy area.  As my husband and I tried to determine our next course of action, the R.A. yowled in fierce indignation - I believe it was something along the lines of - "How dare you, you backward flibbertygibbets!  How dare you manhandle me in such an undignified fashion!  Do you know who I am?!"  He then grabbed my sweater, threw it on the ground and then plopped on top of it - an apparent act of vengeance against me, his bouncy ramp oppressor.  It's as they say on the home planet - vengeance is a sweater best sat upon.  My husband was lucky to be sweaterless  and so escaped unscathed.

I then tried to distract him from his crabbiness with a sno-cone.  The fact that I went the sno-cone route clearly demonstrates my high level of anxiety as the combination of the R.A. and a sno-cone is not pleasant for his caregiver.  Surprisingly enough, the R.A. does not consume a sno-cone as your A-typical earthling would.  For starters, he refuses to hold the sno-cone which means the parent must hold it and periodically squat down to present it to him.  The R.A. then quickly darts his tongue in the sno-cone concoction and quickly withdraws his tongue.  In all, after about 45 minutes, he has licked maybe 8 bits of shaved ice.  At this juncture the ice has melted leaving mostly the syrup which the R.A. finds offensive.  He then proceeds to order his caregiver to get the galling item out of his sight, immediately if not sooner.

Sadly, the sno-cone lacked its usual magical delight.  It did not deter the R.A. from his churlishness.  We moved on to the arts and crafts table.  Perhaps the R.A. was feeling more introspective because as he worked on slapping stickers on a small white gourd, his yowling was not quite as surly.  It was only when his work of art was completed that his rabid caterwauling resumed.  Staff must have been as desperate as we were as they quickly presented another gourd for the R.A. to decorate.  If the gourd art is any indication of the R.A.'s emotions, he is seriously pissed off.  Really?  He hides it so well!  Thank the Kitchen God he has his art to express himself.

We were honestly surprised by the R.A.'s unhappiness as compared to his behavior at the June picnic.  After thinking a bit I realized that my daughter had attended that picnic.  Sometimes the R.A. is calmer at functions that she attends.  He sees her do something and then is more inclined to also participate.  I believe what happens is, she enters the breech first and if she isn't poisoned, beheaded, or made to listen to bad 70's easy listening rock music, the R.A. feels safe and will follow.  She's the Odie to his Garfield.

Fortunately we only have to wait one month (exactly one month) until the school's Harvest Dance.  Should the R.A.'s current sentiment regarding social functions continue at its current level, I'm guessing he will arrive with a shiv he made from a Pringles container.


Monday, September 10, 2012

Finger Licking Good!

It's official.  I am a nitwit.  Although, if you have been following this blog you have probably honed in on that within a couple of postings.

In the R.A.'s opinion, I am now too stupid to eat without a food coach.  No, I don't mean someone to work with me on planning healthy meals. I literally mean too stupid to engage in the act of consuming food.

Tonight the R.A. actually coached me through my dinner.  He paced in front of me while I ate - back and forth, back and forth, never taking his eyes off my dish or me.  Occasionally the R.A. would stop - I am assuming to check my progress.  As he is so detail oriented, a mere glance at my plate was not enough.  The R.A. would stop pacing and lean over my dish, effectively blocking me not only access but a view, his face mere inches from my food.  After assessing the situation he would then straighten up, jump up and down and flap while caterwauling, obviously offering me direction:

"I want you to slice here, like this.  No, no, no!  Aren't you following?  Good Kitchen God, there are juice boxes that are more astute than you!"

"Well?  Are you gonna chew or are you posing for animal crackers?"

"What are you doing?  Are you taking a drink?  You've ruined the symmetry of the moment!"

Apparently my glass of milk very much offended the R.A.  I don't know what the glass of milk did, but at one point it received a very loud and very furious dressing down.  Unfortunately, following the vicious reprimand the R.A. deemed the glass as being insolent and it and the R.A. almost engaged in a shoving match.

At one point my insertion of food into my own mouth was determined to be sub par and the R.A. attempted to not only put food in my mouth but also tried to manipulate my tongue.  Or perhaps having ascertained that it was actually my tongue that was gumming up the works he may have been trying to remove my tongue.

Oddly enough I am now battling a case of indigestion.  I can't for the life of me think why...