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."

Sunday, November 4, 2012

Trick or Trick II


Halloween is a big deal in our house - for my daughter.  This is because when it comes to junk food, my daughter is very sheltered.  She was almost 3 years old when she had her first peanut butter cup.  I'll never forget it.  After eating it, my daughter came tearing into the kitchen, hollering, "Mommy, that chocolate had peanut butter in the middle of it!"  It's like she's Amish when it comes to candy.  That was also the year she finally understood what trick or treating was all about and attempted to go trick or treating for most of the month of November, becoming quite upset when we wouldn't let her.  Once she was so desperate she actually managed to get herself into her costume.  Granted, it was backward and upside down but it was still on.  She was so relentless in her demands to trick or treat that one night my mother and I, in desperation, allowed her to "faux" trick or treat.  My mother went into her room and I went into the bathroom.  My daughter, clutching her trick or trick pumpkin, would knock on each of those doors.  We would "answer" and put candy in the pumpkin. It was actually "recycled" candy as it was taken from her pumpkin but since she was so young it didn't register with her and she was just pleased to get the candy.

Let me explain that I am not one of those "we only eat all natural and healthy although crap tasting food" mothers.  I am careful about the sweets because my daughter comes from a short, round, and metabolically slow people and her idea of exercise is a good brisk sit.  This means that she already  has a propensity toward chubby.  One time my husband returned from taking her to a doctor's appointment and announced that based on her height and weight, our daughter is a perfect square.  That is why junk food is extremely limited in our house.  The minute the calendar changes to September my daughter starts counting down to October 31st.  She enjoys the costume aspect but it's really all about the forbidden fruit or rather forbidden candy.

I am quite parsimonious when it comes to doling out her Halloween candy, limiting how much she can eat at a time.  She will attempt to negotiate, "The container of Nerds is small so how about one box of Nerds plus a Milky Way?"  I, like George W. Bush, however, refuse to negotiate with terrorists.  The big rule is that all candy left in her pumpkin by the Monday after Thanksgiving is given to her father to take into work.  Two weeks prior, my daughter starts to become slightly unhinged. She will periodically take inventory of the contents, "Two Star Bursts, three Nestle Crunch, one Swedish Fish.  Sacrifice the fish, save the Hershey bar - unless it has almonds."  She will circle the pumpkin and mumble to herself, "Three Kit Kats left.  Need to eat those before...the Last Day."  By Thanksgiving weekend I wouldn't be surprised to see her caressing the pumpkin and crooning, "Precious, my Precious."

This year, due to Super Storm Sandy, trick or treating in our town was postponed to the Saturday after Halloween.  Understandably,  my daughter was quite distraught at the news - picture a drug addict discovering there are no more illegal substances available within a 3500 mile radius.  She actually sputtered, "They can't do that to me!  I've been waiting for  an entire year!"  Only the promise of two pieces of candy from our Halloween stash for dessert on Halloween night managed to get her off that ledge.  "I guess that is sort of like two extra unanticipated pieces of candy," she sniffed, magnanimously.

When Saturday finally arrived, my daughter was up at 6 AM, eager to make sure she didn't sleep through trick or treating.  We began the day with an animated discussion of why she could not have a peanut butter cup for breakfast.  "But it's our Postponed-Actual-Halloween!" she argued.

It was a loooonnnggg day, working our way toward the magic hour of trick or treating and not just because we started our day so dang early.  Any occasion for food (lunch, snacks) was pre-empted by heated exchanges involving inclusion of candy because it was "our Postponed-Actual-Halloween."

Finally it was time to don costumes and head out.  One of my friends came over to accompany us out trick or treating.  She even dressed in a witch's costume.  Not only was I impressed by her enthusiasm but amazed that she would willingly want to come to our house for any reason.  I tend to try to leave my house for any reason. 

My daughter was so excited she was practically vibrating.  As with any special occasion, the R.A. looked bewildered yet irritated.  Originally, the R.A. was supposed to be a pirate but unfortunately his pirate hat was lost in the "Great Vomit Escapade of the Unscary Movie" event at his sister's school. By lost I mean that he threw up all over it and I didn't feel like schlepping it and a vomit covered R.A. through the parking lot so I tossed it in the school trash.  Therefore my husband dragged out last year's Thomas the Tank Engine costume.  Bemused, the R.A. permitted us to drape it over him.  When I walked him to the front door, he balked.  "Outside?  You're making me go outside -into the wild?  But it's cold and there's no black Sharpie markers out there.  There's also fresh air and you know it makes me sick."  As I walked down the front steps with him, he did try and run back into the house a couple of times.  Of course my husband decided now would be the perfect time to get some photos of the children in their costumes.  During the photo shoot I had the happy task of wrangling with the R.A.  Any time I let go of his hand he would bolt and attempt to escape into the house while hollering, "No, please!  House, please!" It was sort of like a reverse prison break.

Off my friend and I went with the children to trick or treat, the R.A. bitching the entire time.   It wasn't screaming or shrieking.  It was sort of like a whiny yowl or a yowling whine. "Yowl, yowl, whine, yowl, whine, whine, bitch, yowl, whine, bitch, bitch, chin, chin, caterwaul."  Loosely translated: "This is so stupid!  I can't believe you are dragging me outside in practically subzero temperatures in this ridiculous get up!  I believe this is a clear violation of the Geneva Convention!  As the Kitchen God is my witness you will be among the first vaporized when the invasion comes.  And believe you me, it's coming!"  Gamely, we soldiered on, me half dragging the R.A.  I don't think the kid paused for breath.  He consistently maintained the yowling whine the entire time.  We would walk/drag up someone's driveway, up their stairs, ring the bell, receive the candy, stumble back down the stairs, walk/drag down the driveway, and head back on the road - all accompanied by the R.A.'s Halloween soundtrack of  "Yowl, yowl, whine, yowl, whine, whine, bitch, yowl, whine, bitch, bitch, chin, chin, caterwaul."   For the neighbors that knew us I just yelled "thank you" over the yowling and shrugged as if to say, "Well, you know the R.A."  For those neighbors that didn't know us (and often stood frozen in their doorways, clasping their bowls of candy in shock) I hollered, "He has autism.  I think he's having a bit of a hard time with the whole trick or treating thing," and then I smiled sheepishly as if to say, "Kids do the darnedest things, huh?"  I did not get any smiles back.

The R.A. was so infuriated with the whole exercise that when we would get to the neighbor's door, I would have to lift his arm that was grasping his Thomas Halloween bucket so that the person could put the candy in.  Often this was an awkward moment as the R.A. would energetically resist me and the neighbor would stand there with her hand suspended in midair, not sure what to do as not only had she never seen a child so resistant to candy but never seen a parent force a child to accept it.  During one such instance I stammered, "Take it.  It's not like she's trying to kill you or something."  I guess the only word to describe my neighbor's expression is horrified.

Some neighbors would offer the bowl of candy for children to make their own selections.  On these occasions the R.A. would charge at the person, caterwauling loudly, chinning his free hand.  He would then take a candy and put it in his sister's bucket.  I believe what he was saying was, "Fine!  I will take your poison, but only because I am being forced to.  However, I will make her take it!  So there, substandard, inferior earth creature!  I will always have the upper hand as I am the superior specimen!" I don't think there is word in the English language to adequately describe the neighbor's alarm.

About three quarters of our way through trick or treating I decided not to subject the R.A. (or myself or the neighbors) to trick or treating, sending my daughter up to the door while the R.A. and I  waited at the bottom of the driveway.    His sister, upon getting a candy would ask for one for her little brother, gesturing toward her brother who was pacing back and forth while muttering viciously and waving his hands around a la Mussolini.  I think people gave candy primarily out of fear.

Obviously we were a big hit in the neighborhood.

Shortly after making this decision, my friend scored a Dum Dum for the R.A.  It did seem to calm him a bit but not quiet him.  He still engaged in his whining yowls with the lollipop tucked to the side of his mouth.  But some of his vexation was tempered.  Thank the Kitchen God for Dum Dums!  Perhaps they are the home planet's equivalent of Xanax.

When we finally finished trick or treating and started to head into our driveway, the R.A. pulled free from my grasp, caterwauled joyfully and ran into the house.  Honestly, I think I wanted to do the same.  I don't know which one of us was more relieved that the ordeal was over. 

Me.  Definitely me.












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