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."

Saturday, October 27, 2012

Because Sometimes the Earth Swallowing You Up Whole Ain't Such a Bad Thing

Last Friday night we attended a "Harvest Party" at the R.A.'s school.  "Harvest Party" is such a quaint expression and makes me think that it would have been something attended by Louisa May Alcott's "Little Women."  But somehow I don't think their "Harvest Party" would have included guests dressed as Avengers, pirates, or Super Mario characters.  I also doubt that Meg or even Jo would have boogied to YMCA.  What costumes and disco dancing have to do with harvest, I can't say.

If you recall last year's "Harvest Party," the R.A. spent the majority of the event diligently avoiding doing anything party related or party appropriate.  He actually spent most of his time wrangling a pumpkin - the match ended in a draw.  (Interestingly, I did notice that there were no pumpkins at this year's event.)

This year the R.A.'s  sister attended. She was very excited to go because as everyone knows, as is custom, you get to wear your Halloween costume to "Harvest Parties."  That and the prospect of snacks meant she knew she was in for a good time.

The R.A. was far more subdued at this year's event.  It's either because pumpkins bring out the animal in him or because his sister was there.  Or maybe a combination of both.

Anything out of his normal routine can make the R.A. anxious.  A "Harvest Party" at school is waaaay beyond his interpretation of "normal."  But I do believe his sister's presence calmed the R.A.  He probably thinks, "They can't be planning to do anything too savage because she's here.  For some reason the dopes dote on her.  Kitchen God knows why as everyone knows I am the far superior specimen. No matter.  I will just make her go first and then should it be a surprise attack, I will make my escape in the chaos."

The R.A. did engage in a few party activities such as the limbo and dancing.  I can't say he had a wonderful time as he spent most of the evening looking puzzled.  If there was a speech bubble above his head it would have said, "What is this about?  Seriously.  What is this about?  I don't get it."  But he couldn't have thought it too atrocious as there was very little yowling or chinning.  Perhaps his confusion distracted him.  Before participating in any activity he would closely watch his sister, obviously thinking, "OK, they didn't blow her up and she's still in once piece.  I guess this "Limbo" thing is harmless.  Stupid yet harmless.  The things that amuse these earthlings.  The invasion is going to be a piece of cake.  Comparatively, cow tipping is more of a challenge."

Tonight we attended a program at my daughter's school - a "Spooky (But Not Scary) Movie Event."  My daughter was doubly excited because in addition to the movie, popcorn, and an after movie craft, she got to wear her Halloween costume.  Twice before Halloween - score!

As my husband had to work and for some reason we don't have loads of people lining up to babysit, I had to take the R.A. with us.   When it was time to purchase the tickets my daughter discovered I had paid for three.

"Is Nana coming?" she asked hopefully.

I shook my head.

"Did Daddy take the night off work?"  Her tone had a begging quality.   She knew who the third ticket was for but was desperate for it not to be true.

"No, it's for your brother."

"No!" My daughter cried.  "He'll ruin it!"

I could not disagree with her.  It's not like she just met the R.A. and his track record with events and special occasions is dismal.  We had a 50 - 50 shot that it would work out.  Well, more like a 40 - 60 shot that it would work out.  Okay, who are we kidding?  Realistically, 30 - 70 shot that it would work out, meaning that the conditions would be in our favor, primarily that the R.A. was not feeling overly vindictive or hateful toward earthlings.  All right, make it 25 - 75 that it would work out.

For the few days prior to the movie night, my daughter regarded the R.A. warily.  A couple of times I overheard her address her brother, "Listen, you'd better not ruin this for me.  I went to your "Harvest Party" and did not do anything to mess it up for you."  He stared back at her, no doubt thinking, "Not that it would have mattered to me.  I thought the whole thing was stupid."

Friday night arrived.  I squelched down any feelings of apprehension, anxiety, and terror and gamely got the children ready for the program.  They both looked awfully cute, my daughter as a witch and the R.A. as a pirate.

My mother wished us luck and off we went.

The entire less-than-five-minutes drive to the school I babbled at the R.A. - "We're going to Sissy's school for a party.  Nice party.  It will be fun. We're going to Sissy's school for a party.  Nice party.  It will be fun."  Not only does the R.A. dislike his own school but any educational institution.  It's like he's afraid therapists are going to swoop out of the woodwork, descend upon him and force him to engage in numerous ABA exercises and make him "use his words."  To ensure he wouldn't be too much of mad man as we pulled into the school's parking lot, I had to give him a heads up.  The trick is not to give him a heads up too soon as that just means prolonged yowlings and chinnings.  We've discovered it's best to do it in the car on the way to the function.  The R.A. is safely ensconced in his car seat and therefore we are out of range of a good chinning.  I'm telling you, there is a science to everything we do with this kid.

Fortunately, the R.A. was fairly mellow about the whole thing.  Maybe he still had memories of his "Harvest Party" and thought this could be similar and not require any torture.  So he only emitted a few indignant caterwauls.

It was sheer madness when we entered the cafeteria.  Children were racing and running and acting as if they had consumed two dozen double espressos just prior to attending the event.  I was also happy to have to lug our three metal foldable chairs while also toting our refreshments as well as our backpack of R.A. supplies while also herding the R.A. himself who looked as if he couldn't decide whether to run toward the children or out of the building.

After much juggling and herding, I finally managed to set up our chairs.  We sat down and the R.A. was extremely interested in observing everything around him.  I believe he was fact gathering for the invasion.  I was pleased because at least he was quiet and still.  Fortunately, every parent over 6 feet tall and 5 feet wide sat in front of us completely obstructing our view so I got the added treat of having to heave our chairs and associated crap to another area with the added bonus of some obnoxious parent grabbing one of my chairs when I went back to get the R.A.s juice cup.  Sweet!

The movie finally started.  The R.A. watched everything but the movie.  He was quiet and I felt somewhat relieved but seeing as we hadn't made it through the opening credits I wasn't allowing myself to relax.

And good thing too because at that point the R.A. coughed.  I urged him to take a drink of juice.  He refused and coughed again.  I was just about to tell him to drink when it happened - the R.A. started to throw up.  Swiftly I pulled him off the seat.  We managed to get five or six paces when the R.A. boofed again.  I started to panic because the bathroom was really far away and being acquainted with the R.A.'s barf M.O. I knew the floor would get several hits along the way.

Due to our previous school endeavors, my family is pretty much regarded as fourth class citizens at my daughter's school.  This whole scene bumped us back to seventh class status.  Although I was occupied it did not block out the stares of horror and disgust.  There were a couple of looks of pity no doubt from other fourth class parents who were aware of my family's imminent downgrade.

We finally managed to make it to the girls' room and I steered him over a toilet bowl.  Per usual, the R.A. initially fought me over vomiting into the bowl but when he realized there was no upholstered furniture in the area he gave in and threw up next to the bowl.

My daughter had followed us into the bathroom.  In between wrangling the R.A. over the bowl and quick runs to the paper towel dispenser, I barked at her to get our stuff.  She balked.  I'm sure she didn't relish having to face all those families.  Fortunately, at this point I was very calm and focused and screeched she'd better do it or else.  Probably figuring the "or else" was worse than the task at hand, she left.

The R.A. then decided if there were no furniture around to vomit on, his shoes would be the next best thing.  He also realized my shirt sleeves were very puke absorbent and energetically wiped his paws on them.

His sister returned, all our accouterments in hand.  Unceremoniously she dumped them on the bathroom floor.

"Okay, I think he's done," I pronounced.  "I need to go tell the PTO president what happened.  You two stay here.  If he starts to throw up again..." I looked helplessly at the puddle of vomit at the R.A.'s feet.  "Just let him.  I will be right back."

Then I had the most unfortunate task of seeking out the PTO president.  I had to walk past the various chair tee pees that cordoned off the R.A.'s boof spots.  As I snaked my way around families and the teepees, some parents made a big deal about warning me about the spots.  One mother hissed to her husband, "She knows.  It was her kid."  

I groveled my apologies and the PTO president was actually very gracious about the situation, even offering to give my daughter a ride home so she could stay for the program.   In retrospect I think this was because she assigned PTO underlings to clean up the mess.

I meandered back to the bathroom.  My daughter and the R.A. were still tucked in the stall and she was reaming out her brother for ruining her night.  The R.A. was extremely contrite and offered sincere and heartfelt apologies. Not.  He was jumping up and down in the vomit puddle and flicking his fingers at her.  Even covered in vomit he was defiant to the end.

My next task was to come up with an escape plan that involved not spreading any more throw up.  I surveyed the R.A.'s shoes. 

"Okay, let's take off your shoes," I instructed.

If the R.A. could speak fluent earthling I think he would have said, "Pardon?  But the floor is covered in boof."

I grabbed some of the last few remaining paper towels, deftly removed the R.A.'s shoes and wrapped them in the paper towels.

Two second graders entered the bathroom at this point.  Although my daughter was scandalized that the R.A. would be walking sans shoes, she was more mortified that other kids were witnessing the madness.

Despite being confounded at finding himself without footwear, the R.A. did leave the bathroom with me, no doubt thinking, "Well, it's finally happened.  She's completely lost her marbles.  To be fair there were only a handful left."  It was when I opened the door to the school yard and motioned he step outside that he energetically demurred.

Now we had attended the program component of the "Spooky (But Not Scary) Movie Event" for less than 12 minutes but  I was as exhausted as if I had run back to back marathons in the Andes (which no doubt would have been more fun.)  My sleeves were covered in vomit from the wrists to the elbows.  I confess that I HAD HAD IT.

"This is not the time for you to worry about your socks.  Out!"  I then gave the R.A. a nudge and with a yowl he stepped outside.

He yowled in indignation all the way to the car.  The loose interpretation is, "Don't you know who I am?  How humiliating to be seen traipsing around without footwear!  I look like a hillbilly from the planet QKhl*4 - with eyeballs, of course!"

My mother was not surprised to see us arrive home so early.  Nor was she surprised to hear what happened.

The R.A.'s sister was extremely upset and I don't blame her. I know the R.A. didn't do it on purpose (okay, I'm fairly certain the R.A. didn't do it on purpose) but it isn't fair that a 9 year old has to suck up so much and so often.  Sometimes well meaning people will say to me, "God bless you" with regard to the challenges that I face with a severely autistic child.  I think they really ought to ask God to bless the siblings of special needs kids because they are the ones who end up missing out on or sacrificing things.  In an autism driven world siblings are the ones to be honored and admired because they have to learn at such a young age to accept, adapt, and have courage.





Wednesday, October 17, 2012

A Quiet Night In

Yes, I know.  I have not posted in a few weeks.  Between the lavish European spa trips and yachting jaunts around the Caribbean I simply have not had time. Ah, the whirlwind jet set lifestyle that I lead...

The R.A. is quite the little alien about town.  For this posting I thought I would give you a peek into a quiet night at home.

Before I do, a little background about our family arrangements.  For childcare purposes, my husband and I work different shifts.  He works nights and I work days.  We both work full time outside the home and work full time plus 3 part time jobs inside the home.

My mother, a fellow POW, lives with us.  Don't be jealous, but she does the majority of the cooking.  I believe she primarily does this to ensure that there is food other than Pringles, gummies, and Dum Dums in the house.

With no further ado, I present, a typical night at home:

5:09 PM - Leave my day job and combat the mobile cavalcade of dopes also known as "commuting."
5:42 PM - Pull into my driveway.
5:42 PM - Give self pep talk to enter house.
5:44 PM - Anguish because pep talk ineffective.  Contemplate putting car in reverse and rolling soundlessly down driveway and sneaking to Friendley's.
5:45 PM - Plan foiled by daughter who forces me to leave vehicle and enter house.
5:46 PM - Enter house.
5:46 PM - Realize I have less than 15 minutes to do laundry, lay out clothes for the following day, wash the bathtub, sign various permission forms, check e-mail, write blog, etc. before the R.A.'s after school therapy session is done.
5:47 PM - Despondent because I am pretty certain I cannot accomplish the above mentioned tasks in such a short time frame.
5:48 PM - Have become paralyzed by despair.
5:49 PM - Apparently despair makes me hungry.  Have quick, healthy and gastronomically unappealing snack.
5:50 PM - Help corral R.A. back into living room for the remainder of his session.  R.A. protests by running at therapist and shouting, "Bye-bye, please!"
5:51 PM - Informed that therapist needs to leave early.
5:52 PM - Fight back tears.  Promised self I would not cry.  Again.
5:53 PM - R.A. demands "Feh Fies."  I tell him there are none.
5:54 PM - R.A. demands "Feh Fies."  I tell him there are none.
5:55 PM - R.A. demands "Feh Fies."  I tell him there are none.
5:56 PM - Without a yowl or caterwaul, R.A. takes me by the hand and leads me to the kitchen door.  He places my hand on the doorknob.  He looks at me meaningfully and says slowly as if I am an exchange student from Bulgaria, "Feh fies."  I assure him I understood him the first 37 times and that french fries are not forthcoming.
5:57 PM - 6:12 PM - Subjected to ferocious caterwauling.
6:12 PM - Attempt to lay out daughter's clothes for the morning.
6:13 PM - Remove R.A. from father's sock drawer.
6:14 PM - Attempt to lay out daughter's clothes for the morning.
6:15 PM - Remove R.A. from bathroom counter and wrangle baby enemas from his vicious grasp.
6:16 PM - Attempt to lay out daughter's clothes for the morning.
6:17 PM - Wrangle black Sharpie marker from R.A.'s tiny yet deceptively iron fisted grip.
6:18 PM - Attempt to lay out daughter's clothes for the morning.
6:19 PM - Prevent R.A. from scaling floor to ceiling bookcase.
6:20 PM - Attempt to remember what task I was trying to complete.
6:21 PM - Still thinking.
6:22 PM - Informed by daughter that she needs to eat dinner.
6:23 PM - Instruct daughter to watch R.A. so that I can throw a plate together for her.
6:24 PM - Daughter reports R.A., while wielding a black Sharpie marker,  is sitting on top of the television that is on top of his father's bureau.
6:25 PM - Figure out how to get R.A. down in a such a manner than neither one of us breaks our necks.
6:26 PM - Still thinking.  Difficult to focus as R.A. is brandishing the Sharpie at me while furiously yowling.
6:27 PM - Daughter reminds me she still has not eaten.
6:28 PM - Defy gravity and while precariously teetering on a rocking chair, wrestle R.A. from the top of the TV.
6:30 PM - Wrestle R.A. for the Sharpie.
6:33 PM - Notice Sharpie design on ceiling above TV.
6:34 PM - Mini melt down (R.A. and me).
6:36 PM - Daughter reminds me she still has not eaten.
6:37 PM - Feeling extremely guilty for snapping at daughter.
6:38 - 6:40 PM - Wrangle R.A. into time out chair.
6:40 PM - Stub toe on time out chair.  No longer give a damn about time out chair.
6:41 PM - Prepare plate of food for daughter.
6:42 PM - Alerted to imminent "Boof Fest" by sounds of R.A.'s gagging in the living room.
6:42 PM - Race into living room in attempt to transport R.A. into bathroom before vomiting commences.
6:43 PM - Too late.
6:43 - 6:45 PM - Grapple with a vomiting R.A. in attempt to keep him from throwing up or wiping his vomit covered hands on furniture.  He protests.  Apparently on the home planet, the more plush and upholstered  a piece of furniture, the more desirable a barf bucket.
6:45 PM - Hate husband.
6:46 PM - Daughter reminds me she still has not eaten.
6:47 PM - Informed by R.A. that he is "all done" so carry him up to bathroom.
6:48 PM - While on stairs it becomes apparent the R.A. is, in fact, not "all done."
6:49 PM -Hate husband.
6:50 PM - Daughter reminds me she still has not eaten.
6:51 PM - Peel vomit sodden clothes off R.A. and deposit him into the shower.
6:53 PM - Daughter reminds me she still has not eaten.
6:54 PM - Finally complete putting a plate of food together for my daughter.
6:55 PM - 7:11 PM - Embark on "vomit recon." mission in living room and stairs.
7:12 PM - Remove R.A. from shower.
7:13 PM - R.A. gags.
7:14 - 7:16 PM - R.A. throws up all over bathroom floor.
7:16 PM - Resolve to punch husband in face at first opportunity.
7:16 PM - Place R.A. back in shower.
7:17 PM - 7:21 PM - Clean up bathroom.
7:21 PM -Feel extremely sorry for self.
7:22 PM - Informed by daughter that she just spilled her drink all over the table and floor.
7:23 PM - Rail against the gods and humanity.
7: 24 PM - 7:28 PM - Clean up spilled milk. Do cry over it.
7:29 PM - Gingerly remove R.A. from shower.
7:30 PM - Warily regard R.A.  Try to determine if it's safe to remove him from bathroom.
7:30 PM - R.A. warily regards me.  Just standard operations.
7:31 PM - Warily regarding.
7:32 PM - Still warily regarding.
7:33 PM - Finally dress the R.A.
7:35 - 7:47 PM - Watch R.A. gleefully jump up and down on my bed like he's just consumed half a dozen double espressos.
7:47 PM - R.A. demands juice.
7:48 PM - Depart for kitchen to obtain juice.
7:49 PM - Return to bedroom to discover R.A. in father's sock drawer.
7:50 PM - Tussle with R.A. and finally remove him from sock drawer
7:51- 7:53 PM - Coax/wrangle R.A. down stairs to living room.
7:54 PM - R.A. demands "puhpul ice."
7:55 PM - Return to living room with purple Popsicle to discover R.A. attempting to scale television
7:56 PM - Wrestle yowling R.A. from entertainment center.
7:57 PM - Contemplate running away and joining the circus.
7:58 PM - Horrified to realize that I already live within a three ring circus.
7:59 PM - Hate stupid circus.
8:00 PM - Informed by daughter that it is time for her dessert.
8:01 PM - Consider driving to husband's place of employment not only to punch him but to get out of the house.
8:02 PM - Realize would have to bring children with me.  Defeats purpose of getting out of the house.
8:03 PM - My mother has barricaded herself in her room.
8:04 PM - R.A. is furiously coloring every square inch of a piece of paper.
8:06 PM - Realize paper is actually daughter's ice skating registration form.
8:07 PM - Because coloring means the R.A. is not climbing something, allow him to continue coloring the form.
8:08 PM - Attempt to eat my own dinner.
8:08 PM - Contemplate joining French Foreign Legion.
8:09 PM - Wonder if there still is a French Foreign Legion.
8:10 PM - If there still is a French Foreign Legion, is fluency in French a requirement?
8:11 PM - Intercept R.A. from dining room where his stash of sister's art supplies are located.
8:12 PM - Attempt to eat my own dinner.
8:13 PM - R.A. shoves a crayon into my hand.  It's his way of requesting I remove the paper wrapping that is impeding his artistic endeavor.
8:14 PM - Attempt to eat my own dinner.
8:15 PM - R.A. shoves a crayon into my hand.  It's his way of requesting I remove the wrapping that is impeding his artistic endeavor.
8:16 PM - Attempt to eat my own dinner.
8:17 PM - R.A. shoves a crayon into my hand.  It's his way of requesting I remove the wrapping that is impeding his artistic endeavor. 
8:18 PM - Attempt to eat my own dinner.
8:19 PM - Prevent R.A. from climbing the microwave.
8:20 PM - Copious yowling (R.A.'s).
8:21 PM - Attempt to eat my own dinner.
8:22 PM - R.A. demands more juice.
8:23 PM - Attempt to eat my own dinner.
8:24 PM - Remove R.A. from dinning room hutch.
8:25 PM - Copious yowling (mine).
8:26 PM - Decide I must have been a real a-hole in a past life.
8:27 PM - Attempt to eat my own dinner.
8:28 PM - Copious yowling (daughter's) who informs me that the R.A. has somehow gotten at her special dry erase crayons and used them to color in his IEP.
8:29 PM - R.A. demands "Feh Fies."  I tell him there are none.
8:30 PM - Give up on eating own dinner.  Decide I will try again tomorrow.
8:31 PM - R.A. demands "Feh Fies."  I tell him there are none.
8:32 PM - Exhausted by his rigorous evening, the R.A. begins to tuck himself in on the couch.
8:33 PM -  Decide R.A. and I have spent enough quality time together.  Announce to R.A. it is bed time.  Despite being half asleep on the couch, the R.A. is offended by this idea and caterwauls in indignation and outrage.
8:34 PM - Lead/drag R.A. to bathroom for his evening "toilette."
8:36 PM - During "toilette" R.A. wees on floor.  Pretty certain it was a "wee of retribution."
8:38 PM - Tuck R.A. into his bed.
8:39 PM - 8:42 PM - Clean up wee.
8:43 PM - Join daughter on couch to watch ALF re-runs.
9:00 PM -Night prayers with daughter. Recall  Mother Teresa saying God never gives a person more than she can handle but that she sometimes wished God didn't think she could handle so much.  Amen to that!  Wonder if it's possible to convince God I am actually an under-achiever.
9:10 PM - Tuck daughter into bed.
9:20 PM - Crawl into bed.
9:21 PM - Pass out in exhaustion, taking comfort in the knowledge that I do it all again tomorrow.