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."

Friday, December 30, 2011

Heaven on Earth

If you want to know what is HOT, HOT, HOT this season for Reluctant Astronaut mothers, it's Sonic.  No disrespect to our nation's First Lady* whose mission is healthy eating, but that place is the bomb.  Not only is it a place to get food that children will willingly consume, we don't have to get out of the car.  There's no cajoling a certain person to get out of the vehicle or worrying about matching shoes or fussing over wearing pants. It is absolute bliss.  Keep your fancy filet mignon.  Give me a burger and a roller blading car hop.

It is a bit of a trek for us to get there but that makes it more of a "spending quality time together" event.  These events usually begin by me turning to my husband and declaring, "I cannot spend another moment cooped up in this house with these people.  We need to get them out of my house."  And so with this proclamation, our adventure begins.

Highway travel is involved and this is good as the R.A. does enjoy a pleasant trip down the interstate.  As we proceed he yowls joyfully in the backseat, hands flapping for Britain.  I think the R.A. associates the highway with going some place he likes and/or we're finally driving him down to NASA to be launched back into space.  Hope springs eternal.

Another Sonic selling point is location, location, location.  Sonic is located right next door to McD's!  It's not possible to get better than that.  Ok, the only thing better would be to have a McD's located inside the Sonic. But hey, I'm not going to complain. When we first started going to Sonic we would pull into McD's and then go to Sonic but recently we have streamlined the process.  We go straight to Sonic and place our order.  While we wait for our food, my husband hoofs it next door to McD's and picks up the requisite french fries and chicken nuggets, and ketchup (although to be sure we also ask for extra ketchup at Sonic too.  One can never be too careful about such important things.)

The R.A. enjoys Sonic.  He sits in his car seat and takes in all the cars and people coming and going.  The R.A. is so busy trying to not miss a thing that he actually looks like he is attempting to do the Twist while strapped into his seat - twisting first to the right and then the left and back again.  As the R.A. is totally preoccupied he rarely eats any of the McD meal his father has dashed across two busy parking lots (mostly occupied by teenage drivers - yikers!) to get for him.  Just because, however, the R.A. does not eat the meal does not mean we are excused from getting it.  We have only made that mistake a handful of times before we learned better.  The McD meal is not really about eating.  It's more part of the entire Sonic procedure.  Remove the McD fries and nuggets and we've upset the entire system.  Trust me - we don't want that.

What the R.A. will eat when we are at Sonic are Sonic apple slices.  Witnessing the consumption of apple slices while he rotates around his car seat is a sight to see.  It's amazing any of the apple actually makes it into his mouth.  But it does.  Initially we gave the R.A. the mandatory "see we are trying to encourage kids to eat healthy by giving them these stupid" apple slices that came with his sister's Sonic kids' meal.  Of course, the minute we did that my daughter, up to then an avid fruitarian**, declared she loved the apple slices and felt inclined not to share with her brother.  Now we order a separate pack of slices for the R.A. and I'll warrant we are the only Sonic customers to ever do so because every time we do there's this pause from the person taking our order and then he/she will ask incredulously, "You want a separate side order of apple slices?"

Another thing I love about Sonic is that it is currently the only time I ever get to eat a moderately warm meal while in the presence of my entire family.  I confess that despite being a parent for going on 9 years, I still haven't adjusted to cold french fries.  I know, it's the prima dona in me.

Oddly enough (like most things about us) we tend to go to Sonic more in the colder weather than warm.  This is primarily because once the cold weather hits, the number of places I can take these people becomes limited.  It's not unusual to see us bundled up and hunched over our burgers (and apple slices) in a chilly and fog steamed up car in the middle of winter - cold yet content.  As long as there is a Sonic around I will not have a winter of discontent.  Or at least I'll get a couple hours worth of a break.  I'll take it!

*Ok, maybe I won't get high marks in the  Mother of the Year contest, Nutrition category but allow me to submit that if either of the First Lady's daughters were like the R.A. and had his food issues she would drive that kid personally to McD's, Secret Service be damned!
**A fruitarian is someone who does not eat fruit based on moral and ethical reasons, citing it cruel to force children to consume anything vaguely nutritious.  The average age of a fruitarian is eight.

Sunday, December 25, 2011

Happy Yowlidays

A Christmas morning quiz for you:

The R.A. woke up obscenely early this morning because:
A. He is excited about Christmas.
B. He knew we were up late last night and thought it would be fun to torment us.
C. He wanted to be ready for the invasion which is finally underway.

The correct answer is B although because it is not even 7 AM, the jury's still out on C.

Yes, the R.A. was ready and rearing to go quite early this morning.  We were woken to the gentle dulcet tones of his screechy caterwauling accompanied by the melodic kicking of his door.  It was as if he were announcing, "Awaken!  It is the birthday of Baby Jesus! (dammit!)"

My husband finally stumbled out of bed and released the R.A. from his room when it was apparent that the R.A. wasn't going to go back to sleep and we were afraid he was going to kick the door knob off his door.  The R.A. ran into our bedroom letting out a yowl that could awaken the dead, much as any cherubic Christmas herald would.

Usually when the R.A. is finally liberated from his room and treks to ours, I am out of bed.  This morning I was not and the R.A. found this novel.  He illustrated his interest by standing at the foot of the bed squeezing my feet and legs and occasionally chinning my feet.  My husband says most mornings the R.A. does that to him.  My husband has also theorized that the R.A. is looking for pressure points in an attempt to squeeze and paralyze the victim and/or elicit a death.  Thankfully the R.A. is not that knowledgeable regarding the human body and at this time is not capable of such a thing.

Next the R.A. spent time alternating between sitting on my legs and between my legs.  My husband and I tried to encourage him to lay down between us but to no avail.  When the R.A. did briefly have a lie down it was at the bottom of the bed, across my legs and with his head slightly hanging off the mattress.  Comfy - for him and me!

The R.A. did acquiesce for a short time and joined us at the top end of the bed.  He climbed between us and then proceeded to jump up and down while positioned between our heads.  It is surely a testament to how tired we are that we didn't stop him despite the obvious danger that he could misstep (or rather misjump) and land on one or both of our heads.  We were willing to risk it.

Fortunately the R.A. quickly tired of this.  Unfortunately he then bolted downstairs with his father in hot pursuit.  Further unfortunately the R.A. saw that the living room was full of wrapped gifts.  Between his recent birthday and a Christmas Eve party at his aunt's, the R.A. discovered the joys of unwrapping gifts.  He has found a real affinity for the activity.  On his birthday it was all about the fun of the act of unwrapping and not really noticing the actual gift.  On Christmas Eve it was like a bulb went off in his little alien brain - Wait a minute!  Sometimes after I rip the paper off it exposes something I am interested in!  This is fabulous!  More! More! I don't think I have received enough Thomas themed items!

So when the R.A. descended to the first floor and took in the gifts, my husband then had to convince him not to charge the packages (or his uncle who was sleeping on the couch, having migrated downstairs at the height of the R.A.'s one man early Christmas morning percussion extraveganza).  As you can imagine, this endeavor went extremely well and the R.A. was quite reasonable about it.  Not.

Yowling furiously, the R.A.returned to our room.  Now I must also mention that my husband and I have a temporary roommate - my daughter.  She has been relegated to a corner of our room while her uncle bunks in her bedroom until he heads out to this new job in California.  I am not digressing.  This is important to the story.  Back to the R.A. yowling in indignation - Yowl! Yowl! YOWL!  He then proceeds to run to his sister's bed and hoist himself up on to her frame at the foot of the bed on which he teeters precariously while flapping for Britain and caterwauling.  His sister pokes her head up from the covers and mumbles, "I can't sleep." and then tucks herself back in.  Clearly this is not her first rodeo with this sort of thing.

Tiring of this activity, the R.A. looks for something else to amuse himself.  He grabs the TV clicker and points it at my husband and me in the bed.  I don't think he's indicating he wants to watch TV but rather attempting to use the clicker to vaporize us.  Realizing it doesn't work that way he thrusts the clicker at my husband demanding "YOU!" meaning, "YOU turn on the TV as I want to watch it because you dopes are tedious."
Of course my husband lollygagged during this task and the R.A., deeply annoyed, rigorously barked at him, interspersing Yowlish with "Backyahdibans."

Once his dad finally got the TV situation under control, it was time to eat.  The R.A. demanded juice and Wheat Thins (the traditional Christmas breakfast.)  He munched contentedly while jumping up and down on his trampoline.  Occasionally the R.A. took a jumping break, moving his yoga ball on top of the trampoline, balancing himself on top of the ball while eating crackers while viewing the TV, a mere 3 inches from the screen.

Oddly enough, I could not get back to sleep so decided to tackle the blog, while still sitting in bed.  I have been diligently working, barely pausing when the R.A. has taken trampoline jumping breaks to jump up and down in the bed or when my daughter and I got into a rather heated discussion over her insistence on using my comb and brush to tame her dolls' hair tangles.

Currently my husband and the R.A. are involved in their own animated discussion.  The R.A. is hitting his father with the clicker and demanding, "Backyahdibans!" and my husband is responding (sounding more than a little desperate), "I told you, pirate Backyardigans is not available on DEMAND."

Ah, family togetherness.  Isn't that what the Yowlidays are all about?

Happy Yowlidays, Reluctant Astronaut!

P.S. When it finally was time to go downstairs to open the gifts, the R.A. did not want to go.  When we said it was time, he stood on his yoga ball and declared firmly, "No!"  Eventually we did get him sort of downstairs.  Initially he refused to come into the living room, choosing instead to dangle off the stair banister while yowling loudly.  I think the R.A. may have been engaging in some weird alien caroling.  At times he was so loud we couldn't hear each other talk.

Thursday, December 15, 2011

Anniversary Musings


178th Day of Skdlamvopekdmv a*m<>12pmaiod in the 3678th Year of Our Kitchen God

Annual Report to HQ

It has been 6 years since my assignment to this Kitchen God-forsaken planet.  I know my superiors hoped that in time I would adapt to Earth but honestly it is such a backward place that adaptation is impossible.  The only way I could do that is if I were to have a lobotomy - not that I am suggesting such a thing.  In that case I would still be several IQ points higher than my caregivers.

My superiors have requested that I review my accomplishments.  Unfortunately, as these Earthlings are such extremely lower life forms, getting anything done is a long, arduous and often thankless process, rarely yielding the desired results.  And they wonder at my frustrated bouts of self-hitting!  Some days my frustration is so pronounced I swear I'm going to implode.

After much thought here is what I have come up with:

  • Despite my Herculean efforts at curbing this lazy habit, my caregivers still indulge in sleep, although granted, my efforts have severely cut down the hours they spend lolling around in bed.  The Daddy-Guy is crying less when his sleep is interrupted.  Thankfully he is starting to "man up."
  • Mommy-Girl's greatest adversary is her stubbornness and insisting on access to electric lighting. I admit that since stepping up my training efforts the Mommy-Girl is slowly and painfully improving. Apparently she is also starting to "man up."  Her ability to dress in complete darkness is getting better and resulting in some very creative ensembles including mismatched footwear.  I have also made a point of never allowing her access to electric lights.  Now, even if she has a door closed (and locked) I will enter the room, shut off the lights, and then exit the room. I have learned that yowling in indignation prior to entering the room alerts her to my presence and she is then able to block the door with her body.  Now I move stealthily, like a jz%^vmm.*
  • I can vomit at will.
Grudgingly I am starting to learn Earth language.  Mostly it is due to the efforts of the officers at my new Institute of Earth Acculturation.  Initially, as they are all quite aesthetically pleasing, I thought they would coo over my chubby cheeks and freckles and we would spend our days coloring and eating gummies, much like my last Institute of Earth Acculturation.  Much to my horror I discovered this not to be the case.  They monitor me constantly, demanding I do things as they direct, presenting awful consequences if I do not, such as ignoring my outbursts, making me sit in the "Chair of Solitude," and denying me access to crayons and Thomas toys. Those ladies won't get off my back. What is up with that?  As you can see, when faced with such horrific consequences and in the name of self preservation, I am slowly starting to utilize the primitive Earth language.  One plus is that the "Clueless Wonders" (a.k.a. my caregivers), finally understand most of my demands.

As it is my Earth birthday, the Dimwitted Duo attempted to engage me in Earthling birthday customs.  One strange practice is lighting a cake on fire and presenting it to the birthday person.  At first I did not understand and thought they were going to torture me with it so I ran like hell.  Adding to the torment they then started singing.  When they finally realized that I was not going near the flaming cake, Mommy-Girl blew out the candle.  Then they repeatedly tried to get me to eat the cake.  Not only did they try but Nana-Lady and that Pi-Person did as well.  This went on for at least a half hour before they accepted that I would not eat their damn cake.  I did hear the Mommy-Girl tell them to stop because I would only throw it on the floor.  I admit I was somewhat impressed that she understood how the situation would play out.  Historically they are not so swift on the uptake.  Well, it's only taken 6 years.

So another year of my mission begins.  Kitchen God only knows what is in store.  I pray He gives me strength to endure.

*a very stealthy creature on the home planet.

Tuesday, December 6, 2011

Good Help is Hard to Find

Surprisingly enough, it is somewhat difficult to find a sitter for the R.A.  For some reason we are not inundated with people offering to babysit him.  People do offer to babysit his sister which causes me to say, "You know she's not an only child, right?"

So I was ecstatic when someone, under his own volition, (and also not under the influence of mind altering pharmaceuticals, well not that I'm aware of) offered to babysit the R.A.  I'm sure the potential sitter only made the remark to be polite but tough tofu - he put it out there and you can bet your sweet bippy I'm taking complete advantage of it. 

Mind you, we can't leave the R.A. with your run of the mill 9th grader.  Only the Kitchen God knows what would be the end result of that.  I'm picturing coming home to find the sitter bound and gagged with Thomas the Tank Engine sheets and the R.A. sitting in his father's sock drawer covered with melted popsicles and Pringle crumbs and cradling our set of steak knives in one hand while waving the "Stick of Infamy" in his other.  Of course that's my sunny and upbeat version of what would transpire.

No, our sitter is actually a trained professional - in mixed martial arts.  O.K., unfortunately we don't know someone like that.  The real sitter is a special education teacher with extensive experience with ASD kids including the R.A. himself.  It is pretty amazing that despite knowing the R.A., Mett* still offered to babysit him (the more I think about it the more inclined I am to consider that perhaps pharmaceuticals were involved...oh  well, beggars can't be choosers.)

Why do we need a sitter?  So that we can do dinner and a movie?  Attend the theater?  Enjoy a pleasant afternoon at CVS, shopping without worrying about someone jumping from the moving shopping cart to land spread eagle on top of the gigantic bag of Dum Dums conveniently located on the very bottom of the store shelf?  The reason we need a sitter is that this coming Saturday my husband and I are conducting a "Sensory Santa" at my place of employment. It is basically Santa for the sensory sensitive set - lights low, carols playing softly, and a Santa who is reserved and soft spoken - think Gary Cooper with a beard.  Ironically, we are unable to bring the R.A. as we can't run the program and watch the R.A.  Thus the need for a sitter.

The following is based on an e-mail I sent to Mett about the babysitting gig:

Dear Mett:
By the way, if you want to bring the R.A. to the Sensory Santa program at the library, you can.  It’s 9:30 – 11 AM and is a drop in and drop by program for ASD and sensory kids to visit with Santa.  I leave it up to you.  If you do decide to drop by, here are some helpful tips:

1.       Hold the R.A.'s  hand firmly as you enter the library as he will attempt to bolt from you.  When holding his hand give him wide berth as he will attempt to head butt you in your man bits as he struggles to free himself.  Don’t forget that the boy fights dirty.

2.       Although the activity is in the meeting room he will prefer to be in our audio-visual area where he will engage in stacking Thomas videos into towers and subsequently become infuriated when you intervene.  There will be aggressive chinning involved, primarily from the R.A.  but you might end up engaging as well depending on how frustrated you are.  Yeah, I’m going to go with you will be chinning too.

3.       He will also attempt to get into my office as we keep a stash of Dum Dum lollipops in there.  We have discovered that not only are Dum Dums the lolly of choice of Reluctant Astronauts but also middle schoolers on boring library tours.

4.       Do keep in mind this is my place of employment so try not to shame me too much.  Also, don’t take it personally if I act as if you and I (and the R.A.) have never met before.
  
So, I anticipate a big, fat, fun, and fabulous Saturday!

Yowlingly yours,
the R.A.'s mom

P.S. You may also want to know that although the school is now working off of the R.A.'s  new IEP which is firmly addressing the chinning issue, the chinning has blossomed.  Not only does he chin arms but now feet (his and other people's.)  If you have steel toed shoes it would be recommended to wear them.  Oh, and it does smart a bit when he chins an ankle – FYI.  You know what?  You might want to wear those fishing boots that go up to your hips.

*The name has been changed to protect the innocent and I don't want to blow it with the only person on the entire planet who offers to babysit the R.A. I am also required by legal action to do so.

Thursday, December 1, 2011

A Regular Blabber Mouth

In spite of not being much of a talker (well, at least not using a recognisable Earth dialect) the R.A. is very skilled at the art of communication.  My family is also becoming more fluent in "Yowlish:"

The R.A.: "Yowl! Yowl, Yowl, Yowl, Yowlllll!!!"
His Father: "I told you I can't put on the Backyardigans' pirate episode because 'On Demand' is not working and it doesn't matter how many times you whack me in the head with the clicker.  The thing isn't working."

The R.A. "Yowl! Yowl! Yowl! Yoweeeelllll!"
Me: "I know you don't want me to go near my closet but I can't go to work without my pants.  Again."

The R.A. does have some Earth language communication skills including a modest English vocabulary.  He just chooses not to use any of those skills voluntarily.  The R.A. uses English only when forced and then only done under extreme duress and with a dash of insolence and a smidge of resentment.  It's probably something along the lines of refusing to use the language of his lower life form and excruciatingly dimwitted captors.

When the R.A. does speak English, he is a "lazy talker."  The beginnings of his words and phrases come out clear and strong but by about half way through it peeters off.  For example, "Happy Thanksgiving" sounds like "Happy Gib....."  I think the R.A. has a very low regard for English (and Earth culture in general) and that by half way through whatever he's saying he's like, "Oh, hell.  Who cares? I don't.  Whatever."  It's as if he can't be bothered taking on such a Barbarian tongue.  The R.A. obviously feels it isn't worth the trouble to learn the language as once the invasion comes we will all be forced to speak Yowlish.  Thankfully my family already possesses a good fundamental understanding of Yowlish.  Unfortunately, although we comprehend it, we can't speak it.  I'm sure that will be o.k. as our new masters will no doubt attribute our inability to speak Yowlish to our inferior Earth intelligence.

There are actually many instances of children on the autism spectrum with extremely limited communication skills, even those who don't speak at all, to one day - BOOM! - speak in complete sentences.  It would not surprise me if one day the R.A. did this.  It also would not surprise me that he would be speaking in Maori  - just to be defiant.  It would be yet another way for him to torment us as it's not like we are in the epicenter of indiginous New Zealand culture.  He would also probably say things like "Epo e tiy tiy aye!"*  which would translate into, "Suck it, lower life forms!"

*Not actual Maori