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, June 10, 2011

Fish N Chips

The most interesting person the R.A. knows is his 8 year old sister.  There is a lot to be said about a woman who can carry off a fairy dog mother outfit while also doing handstands.  Heck, there's a lot to be said about a woman who can just carry off the fairy dog mother outfit.

Among the numerous things the R.A. finds fascinating about his sister, her bedroom ranks in the top five.  I think the significant appeal is that his sister's room is verboten.  Despite having a slide lock on the door, the R.A. is crafty.  No daydreaming if you are going in or coming out.  You have to be extremely vigilant.  If not,  he somehow manages to sneak in.  I swear, sometimes it's like living with a Black Ops expert.  So then you have to haul him out and he's of the opinion that if he figured out how to get in, he's earned the right to stay.  As in any situation where the R.A. needs to be removed by force (95.7% of situations if you are wondering) it isn't pretty - mostly that gruesome Greco-Roman small child wrestling hoo-ha.  The hard part is getting him out of the room and getting the door locked.  If you're not careful he makes a bolt back in and you're back to square one only now you're exhausted because you've already had to wrangle him out of the room.  Chances are you're winded and sweat is now dripping in your eyes so you are at a definite disadvantage.  And he knows it.

His sister's bed has tremendous appeal as he doesn't own one.  I should say the R.A. doesn't own one any more.  The bed wasn't so much for sleeping as much as a mechanism to launch himself into the air and on to other pieces of furniture in the room.  Therefore he loves to jump on to his sister's bed and rocket around the room.  The R.A. is also a huge fan of the headboard.  He enjoys climbing up on it and balancing on it on his tiptoes.  But then who doesn't?

The R.A. is also a big fan of his sister's closet, naturally.  Any new one is quite novel. 

But the main draw for the R.A. has nothing to do with furniture.

The R.A.'s sister loves animals and spent years desperate for a pet.  Unfortunately her family of origin is allergic to fur, feathers, hair, down, and some types of polyester.  Pets not really our thing. Pets especially not the environmentally and atmospherically sensitive R.A.'s thing unless we just had him go around in an HAZMAT suit.  (But knowing him we'd spend all the money on the suit and then he'd refuse to wear it.)  My daughter finally wore my husband down.  He talked me into getting her a fish.  I was quite hesitant mainly because it would just be one more thing to take care of and let's be honest, we were sort of shaky with the two children we were supposedly responsible for.  But my husband swore he would take care of the fish.

Right off the bat we knew the R.A. and a fish would not be a good combination.  It is pretty much a given that the R.A. will always be interested in something that you desperately wish he were not and conversely will never be interested in something that you wish he were - like talking or sleeping.  We discussed the best place to keep the fish so that it would have no contact with the R.A.  Finally we decided to put it our daughter's room and to put a lock on the door so that the R.A. would not have access to the room.  We also agreed to go super cheap as really, for all intents and purposes, this pet was disposable.

Our daughter was thrilled to receive a bright red beta fish for her 7th birthday.  I gave Fishy Noodles three months.  Part of me felt guilty like we were setting our daughter up for heartbreak.  My husband was more easy going about it and preferred to think of it as a possible life lesson.

Two days after Fishy Noodles became a member of the family, the R.A. discovered him.  My husband and I were alerted to the fact that the two had become acquainted by our daughter's hysterical screams.  We ran into her room to see the R.A. crouched on his sister's bureau, his chubby hands splashing around the fish bowl, crying delightedly, "Fishy!  Fishy!"  Amidst all the shouting (pretty much all of us at this point and I'm betting even the fish) we were finally able to drag the R.A. out of the room.  Once the R.A. was out of the room and ensconced in his own, we checked on Fishy Noodles.  I was afraid we would walk in to find FN flopping away on the bureau or floor.  That would really make me feel like a failure if we couldn't keep the fish alive for a week.  Thankfully FN was still in his bowl - cowering underneath the fake plant - but alive nonetheless.

Unfortunately for FN, we were as lousy caregivers for him as we were for the R.A. as we were not overly diligent about keeping my daughter's door closed and locked.  The R.A. had lots of access to "Fishy!"  As a result FN became extremely jittery.  Anytime anyone entered the room he would start to shake and attempt to hide under the fake plant or in the little castle in his bowl.  My daughter's screams were a regular event.  The most memorable time was when we couldn't find FN in the bowl or on the bureau or surrounding floor.  At that point we were panicked that the R.A. had ingested FN.  We had the R.A. pinned down on his sister's bed and were trying to pry his mouth open when my daughter called, "It's ok!  Fishy Noodles was in the castle!"  Relief all around!  Especially since we didn't have to make a trip to the ER and have to explain what we thought our son had swallowed.  And no doubt he would have been allergic.

Amazingly enough, we passed the three month mark.  We passed the four and five month marks.  We hit the sixth month mark!  Despite suffering from serious nerves, that Fishy Noodles was one tough hombre.  But alas, he was living on borrowed time.  The final encounter between FN and the R.A. proved too much.  My husband and I are not forensic experts but based on what we saw in the bowl, either the R.A. dropped the castle on top of Fishy Noodles and crushed him to death or during that enforced "playdate" Fishy Noodles' heart finally gave out.  He expired and then the R.A. dumped the castle on him.  Either way, I think in the end it was a blessed relief for FN.  Peace at last.

My daughter was heartbroken.  We didn't tell her the details of Fishy Noodles' demise as we figured that was the type of thing that would lead to a lifetime of resentment. Because they are both so young there's a whole lifetime for that.  Why not save it?

After some time had passed, my daughter felt ready to start anew with another fish.  I confess that I still wasn't ready.  I was traumatized by the whole Fishy Noodles experience.  Again, my husband talked me into it.  And purchased a bowl with a lid.

This time we gave my daughter the fish on the Q.T. so that the R.A. wouldn't know about it.  We thought if he didn't know about Phil he wouldn't be so gung ho to make friends/terrorize him.  That's exactly what we did and Phil enjoyed several weeks of peace.  We enjoyed having a fish who didn't have tremors or who spent his time hiding underneath his fish bowl toys.  It was nice to see a fish in a bowl swimming.

But all good things must come to an end.  One morning my daughter and I were in her room getting her ready for school.  Before I knew what was happening, the R.A. had propelled himself into her room and onto her bed.  He was maniacally jumping on the bed and I was frantically trying to grab him before he saw Phil.  I finally managed to wrestle him down onto the bed, face first.  He was wild, fighting to free himself and yowling.  I tugged and pulled to get him off the bed.  He lifted his head to let out a roar and at that moment he noticed Phil, merrily swimming not three feet from the R.A.'s face.  Immediately rage turned to sheer delight, "Fishy!"  I took advantage of this lull in the rage, swooped down, snatched the R.A. off the bed and hustled him out of the room.  He was not pleased to find himself on the other side of the door.  He pounded on it and hollered, "Fishy!  Want Fishy!"

This time around we are much better at remembering to lock my daughter's door, much to my son's dismay.  My husband said that one day the R.A. was in the hallway outside his sister's room, keening pitifully.  His father asked him what was wrong and the R.A. went to his sister's locked door and actually said, "Want Phil.  Want Phil."  I'm pretty certain that Phil is not on the other side saying, "Want R.A.  Want R.A."  Live long and prosper my little aquatic friend.  Although honestly, the odds ain't so great.

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