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, 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.











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