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, March 31, 2012

Happy Autism Awareness Month!

April is "Autism Awareness Month."  Like 99.9% of ASD parents, I couldn't be any more aware of autism if I tried.  I think for us they ought to have an "Autism Unawareness Moment" and see if we could go at least one minute without being aware of autism.  Okay, let's try it.  And go - now!  I bet you didn't even make it to 30 seconds without being aware of autism.  It would be easier if we tried not to be aware of breathing or gravity or Dolly Parton's chest.

Autism is all encompassing.  It dominates families.  It dictates where you go, when you go, what you bring, how long you stay.  It changes your life and the life of everyone in your family. Nothing is spontaneous.  Everything requires careful planning.  Autism is a lot of work.  Autism is not easy.

Despite the challenges, life goes on.  One of the biggest challenges is how to manage a life despite the autism.  And not just a life for the person on the spectrum but for everyone in the family.

It's good that there is an "Autism Awareness Month" so that others can know about autism and that it is the fastest growing developmental disability in the world - "We're Here. We're Not Making Eye Contact. Get Used to It."  This rapid growth also means there are more families dealing with autism's challenges.  I have found most people are uncomfortable with the "real talk" about autism - that it can be hard, heartbreaking, and sad.  Some ASD families don't like admitting the difficult stuff because they are fearful that people will interpret such admissions as meaning they don't love their kids on the spectrum.  This is a shame as I think we would feel better if we could talk honestly about the exacting toll autism can take.  And if we could feel better we would feel stronger and better able to cope with the difficulties.

As referenced in an earlier blog, I am a person of faith.  My faith is one way I get the strength to do what I need to do with regard to my son and my family. I've also discovered a patron saint (or almost saint) for autism and ASD families - Blessed Margaret of Castello. Prayer is powerful and Lord knows I need all the help I can get!

So as I've been thinking about "Autism Awareness Month," I've been praying.  I started to think about a prayer for ASD parents.  What would I pray for?

For the times when I am overwhelmed, Lord, grant me fortitude.
For the times when I am confused, Lord, grant me clarity.
For the times when I am resentful, Lord, grant me tranquility.
For the times when I am sorrowful, Lord, grant me consolation.
For the times when I am exhausted, Lord, grant me strength.
For the times when I am frightened, Lord, grant me comfort.
For the times when I am frustrated, Lord, grant me peace.
For the times when I am full of self-pity, Lord, grant me perspective.
For the times when I feel I am at the end of my rope, Lord, grant me perseverance.
Lord, please give me what I need when I need it especially at those times when I don't exactly even know what "it" is.
And please, Lord, help me to remember to laugh!

I pray that for myself and for all Special Needs Parents.  May God bless each and every one of you. Remember to rejoice in your blessings for the good God is so very good!


Happy Autism Awareness Month!

Friday, March 23, 2012

A Brand New You!


This past year I've lost some weight.  People are always interested in how I did it.  I'll let you in on it. You've heard of the "South Beach Diet," the "Subway Diet," and the "French Woman Are Too Condescending to Ever Be Overweight Diet."  There is now a revolutionary new diet - the "Reluctant Astronaut's Turbo Super Diet Plan."  It isn't just a diet.  It's a way of life.

What is the "Reluctant Astronaut's Turbo Super Diet Plan?"
It is a patent-pending, carefully designed system that is proven to make you lose weight, whether you intend to or not.

Does it work?
The Reluctant Astronaut, the creator and official yowl-person for this system is still within fighting distance of his original weight - 7 pounds, 2 ounces.  You tell me if it works.

How does it work?
It's a complex system of rarely ever being allowed to eat and when you are permitted to partake of sustenance, you remain in constant motion.  It is a system of simultaneous eating and exercising.  So you BURN CALORIES WHILE EATING!  That's the genius of the system.
The R.A.'s Turbo Super Diet Plan also works because it curbs your appetite.  The system produces a mixture of indigestion and anxiety that will make it difficult  not only for you to digest food but will pretty much put the kibosh on any desire to eat.

It's that easy!
Is the R.A.'s Turbo Super Diet Plan right for me?
If you're reading this and you're an American, according to the media, you are morbidly obese.  So put down that piece of fried chicken, get off your fat arse, and do this plan.
What does it cost?
Here's the really exciting part.  It costs NOTHING!  The only thing you need to pay for is shipping and handling of a small alien. And also - carefully vetted juice boxes, bananas, "Finding Nemo" gummies, Dum Dum lollipops, 100 calorie chocolate chip cookies and Pringles. When the R.A. comes to stay in your home as your personal weight loss counselor, we strongly recommend having these supplies on hand.  You want to lose the weight but do you want to lose your sanity in the process?  I mean, am I right?
Contact us today and we will throw in, at no extra charge, the nine year old "World's Pickiest Eater" (9 years running!)  Her whining and incessant demands are guaranteed to ruin any meal time thus speeding up your weight loss process.

What are you waiting for?  You won't recognize the person you will become (what with the dark under eye circles, stress wrinkles around your mouth, and shaky hands...)
Disclaimer: The R.A.'s Turbo Super Diet Plan has been known to induce nausea, light headedness, dizziness, hair loss, tooth loss, and ulcers.  Stop using this product if you develop persistent babbling, night terrors, fear of small boys with freckles.  Contact your doctor immediately if you have uncontrollable bouts of weeping or suicidal thoughts. Do not use this product if you are pregnant, have been pregnant, considering becoming pregnant, ever thought you might be pregnant, have impregnated someone (either on purpose or accidentally), are considering impregnating someone, know someone who is pregnant or know someone who is considering becoming pregnant.  Do not use drugs or alcohol while using this product (although only the Kitchen God knows it will be a mighty temptation).  The use of drugs or alcohol will only increase the severity and frequency of seizures and blackouts.

Become the you you never imagined you'd be!  Whether you want it or not!

Monday, March 19, 2012

Holy #*%@!


On Saturday my husband and I once again threw caution to the wind (and common sense out the window - yes again to that too!) and brought the R.A. to church.  Sleep deprivation is responsible for either making us very brave or even stupider than most people credit us for.  The smart money is on the second option.  I also thought it's Lent which is all about suffering. So making the other parishioners suffer through Mass with us was really a service.  I'm sure if we had lived during the time of Ignatius of Loyola, enduring us would be part of his spiritual exercises. On second thought, it's probably a blessing that we were not his contemporaries as only we would break a Jesuit.  You're welcome, Roman Catholic Church!

If you recall from past postings the R.A. was no saint in church, at least not in the way we earthlings think of saints.  Probably on the home planet his behavior was considered quite pious.  Once his actions started causing my husband and me to have involuntary tics, the R.A. was placed on church sabbatical.

I am a person of faith.  This is evidenced by my very active prayer life:
  • My God!  What has he done now?
  • Christ on a cross!  Get down from there!
  • Jesus, Mary, and Joseph!  Is anything broken?
  • Suffering Mother of Jesus pray for me!  Is it the entire container of sun block? And no, pointing out that now he won't need sun block for the next 3 months is not funny!
With the way my life is, I seem to be naturally drawn to call on Heavenly assistance quite frequently.  I wouldn't be surprised if sometimes they put me on mute.  I don't blame them.

In addition to my incessant spontaneous prayers I also have some favorite formal invocations.  They are quite beautiful and inspiring:
  • St. Patrick: Christ be with me, Christ before me, Christ behind me. Christ in me, Christ beneath me, Christ above me.
  • St. Ignatius Loyola: Lord Jesus, teach me to be generous; teach me to serve you as you deserve, to give and not count the cost, to fight and not heed the wounds.
  • St. Augustine: O, Father, light up the small duties of this day's life: may they shine with the beauty of your countenance.
  • St. Richard of Chichester: Thank you Lord Jesus Christ for the all the benefits and blessings which you have given me, for all the pain and insults which you have borne for me...
  • Me: Dear God, please don't let the R.A. act too crazy during Mass!
Okay, that last one isn't particularly pretty or inspiring and my prayer won't be included in a book of devotions but it was answered because the R.A. did not act too crazy during Mass.  Now mind you, my interpretation of "not too crazy" is relative - meaning the R.A. did not bolt down the aisle while yowling in hysterics; he did not serenade us with a curse word ditty; he did not attempt to climb any of the stained glass windows; he did not lob his juice cup at an unsuspecting parishioner, lector, Eucharistic minister, altar server, pastor, or even a family member.  What the R.A. did do was to sit in the pew, rocking and waving his hands.  He occasionally cried out but he sounded pleased and wore an amused expression.  This expression clearly read, "Oh, these simple and primitive Earthlings with their quaint and backward beliefs!"  It's the same expression visitors wear when touring Shaker museums.
No doubt the R.A. was comparing our religious service with that on his home planet.  Based on the R.A.'s devotion to the small Eiffel Tower souvenir in our kitchen, I imagine that the focal point in his house of worship would be a large tower in the middle of the room.  I envision services for the Kitchen God to be far more rigorous than ours,  requiring much climbing and hanging.  No doubt instead of kneeling they teeter on the edge of the tower on tippy toes.  I propose that the services are extremely loud between the tossing and clanging of sacred objects and the cacophonous caterwauling of the congregation not to mention the caterwauling choir.  I wonder if instead of exchanging a sign of peace they energetically chin each other.  Perhaps they chin until one "chinee" tips over and the "chinee" still standing receives a special blessing from the Kitchen God. 
"This service is over.  Go now and chin in fury."

"Thanks be to the Kitchen God."

Monday, March 12, 2012

Mall Rats 2

We went  to the mall on Sunday.  As I posted previously, the R.A. does fancy the mall.  He especially likes to Earthling watch.  Initially I thought he was enjoying the Freak Show that is mall visitors but after Sunday's visit I think there is more to it. 

As the R.A. is officially six in Earthling years, we now make him walk in the mall like a "regular" person.  Despising anything that smacks of "just your average" Earthling, he resents it tremendously.  I also think, in his mind, being in the stroller is akin to a Pharaoh being transported in his royal litter by his slaves. 

After a bit of bitching and a dab of ire, we managed to coax the R.A. to get out of the car.  I don't think it was so much our convincing argument that there are lollipops to be had in the mall but rather the annoying sing-song tones we used to communicate: "Lollipops!  Lollipops in the maallll!"  The R.A. was really trying to get away from us.  He's not alone in that as family, friends, and complete strangers can attest.

Very slowly we made our way to his favorite spot in the mall - the Food Court. To demonstrate how caught up the R.A. gets in checking out all of the action, he inadvertently ate some Burger King french fries after which he did NOT immediately demand McD french fries.  He also did not vomit in cruel retrobution at being served unacceptable french fries.  The R.A. was too busy not only to eat but to complain or to be demanding.  (Which is why my husband and I are big mall fans.  I think if we could get away with it we would just hang out at the mall all the time like a pair of elderly tween parents lugging around our unruly offspring.)  As the R.A. swiveled around in his chair attempting not to miss a minute of anything, I reconsidered his attraction to people watching.  I don't think he was thinking: "Uggh!  Just because they make it in that size doesn't mean you have to wear it!"  I think it was more along the lines of: "Vaporize, vaporize, vaporize, enslave.  Vaporize, vaporize, enslave, enslave."  I propose what he is actually doing is taking an inventory.

The R.A.'s second favorite thing at the Food Court is the merry-go-round.  Both my kids love it.  Unfortunately I am a slow eater so it tends to fall on my husband to take the kids on the ride while I am stuck by myself eating in peace all alone.

It's not the ride that my husband and I mind.  It's the conclusion of the ride.  The R.A. is a big fan of the ride itself but not a fan of getting off the ride when it's over.  My husband usually has to pry the R.A.'s fingers off the merry-go-round horse's pole.  On Sunday the R.A. was so intent on remaining that my husband claimed the R.A. was horizontal as he gripped the pole with both hands and attempted to use his own body for leverage.  My husband said the R.A. looked like a human body flag.  After a brief but rousing bout of "Greco Roman Alien Small Child" wrestling he managed to remove the R.A. from the ride.  The R.A. was so distraught by the experience that he attempted to throw himself into a random stroller.  Fortunately it was empty but my husband had to engage in yet another bout of "Greco Roman Alien Small Child" wrestling.  The R.A. was furious and it's only due to another mercilessly awful chorus of "Lollipops! Lollipops!" that he grudgingly calmed down enough to allow us to half drag him out of the Food Court.

At the candy store the R.A. was still clearly resentful and demands not one but two lollipops.  My husband actually initiates a spirited discussion with the R.A. about only having one lolly to which I hiss, "For Kitchen God's sake let the boy have another lolly!"  I am painfully aware that our daughter still has yet to pick out her treat - the selection of which is a long and drawn out process.  Let's just say she makes Hamlet look decisive.

Religion may be the opiate of the people but lollipops are the opiate of angry aliens.  Once he was clutching a lolly in each paw, the R.A. was downright cheerful.  He was happy to have the rare treat of two lollies but happier to know he had bested us.  The R.A. is always happier when he has bested us.  One would think he would be happy then pretty much all of the time as any reader of this blog would assume.

Friday, March 9, 2012

He..re...'sssss... Q-Quork 7!!!


The R.A. was up obscenely early this morning (2:30 AM - 6 AM.)  Fortunately it wasn't one of those "I am pulsating with a fury so strong that I have vomited not only all over myself but over everything in my room save for a 2 inch square area and a corner of one of my pillows."  He sounded like he was having a hell of a time for himself.  There was a lot of chatter and much laughter.  Either it was an alien cocktail party or he was broadcasting his talk show live from his room.

Here are excerpts from a translated transcript:

Intro. music

Announcer: It's Earth Bound and Down!  On tonight's/this morning's show - a ketchup jamboree with MzZlr-uG9; this week's "Earthlings Do the Dumbest Things Review;" vacation tips with 6~iiII<kw; and featuring musical guests the Tank Engine Twelve performing their smash hit, "Smash, Hit, Clang, Bang, Get Up You Lazy Inferior Earthlings the Sun Will Be Up in a Mere 5 Hours."  And now, here's your host, Q-Quork 7*!

R.A.: Hey, everybody!  Great to see you!  We do have a terrific show lined up for you.  Hey, Tinky Winky, how many earthlings does it take to spPPlit#$::uy?

Camera pans to the R.A.'s Teletubbie side kick who  shakes his head and shrugs.

R.A.: None!  They don't know how to spPPlit#$::uy!!!

Camera pans back to Tinky Winky who is shaking with laughter.  He wipes away the tears from his eyes with his purple paw.

R.A.: Okay, well we've got to take a quick break but when we come back we'll be joined by
MzZlr-uG9 who's going to share some tips about making great ketchup selections.  He promises that after you hear what he has to say you will only accept special ketchup imported from the U.K. - that's the United Kingdom not u6*?//1K5   K**3??!#!  I can't wait to hear what he has to say.  His last book, Maximize Your Yowling Potential really changed how I yowl.  Within the first week of trying his new yowling system I increased my caterwauling by at least 6 decibels.  It's going to be great so stay tuned!

Later in the show...
R.A.: Okay, so that's the deal with my sister's fish. [lots of canned laughter]
Pointing to a projected photo of his sister -
R.A.: That's my sister there. (He shakes his head)  I know other operatives have sisters.  Theirs seem to have more teeth.  My earth caregivers are really cheap.  No doubt they got some sort of deal on her because she had missing parts!  Oh no I didn't! (high fives Tinky Winky)

Later in the show...
R.A.: Believe it or not but summer will be here before we know it.  That means vacation time.  Coming up 6~iiII<kw will share invaluable tips about how to ruin a family vacation.  Let's face it, no matter how much of your special crap your earth caregivers pack, they still can't get it right.  Frankly, they are not bright enough.  They cannot replicate your home system, a system that took you years to perfect and years to train your astonishingly dim caregivers.  6~iiII<kw will teach us the best ways to spoil any vacation, everything from how to induce bronchitis to my personal favorite,  throwing up on demand, and much, much more.  It's really good stuff so don't go anywhere!

Later in the show...
R.A.: (giggling so hard he can hardly speak) Oh, Tinky Winky!  Your impersonation of what the Daddy Guy looks like after I head butt him in his man bits is almost as funny as the real thing.  It never gets old!
Well, folks, that wraps up things here.  Join us next time and we'll be talking to bNM*&7i(20>>?P:12 about her new book, 10 Things Earthlings Hate and How You Can Exploit That.  I can't wait!
Tank Engine Twelve, take us out of here, nice and loud!

Music out
*The R.A.'s name on the home planet.

Monday, March 5, 2012

Where the #*&% Have You Been?

My most devoted fans have wondered where I've been.  I thank both of you for your interest.  I've just been living my usual jet-set/rock and roll lifestyle. Although you're probably going to read about it in next week's People magazine, I thought I'd share some of this past week's low-lights.  There's so so much I just don't know where to begin:
  • I celebrated a birthday.  In a fitting fashion, the auspicious occasion was heralded in with a shower of throw up.  At approximately 12:20 AM (EST) I was awakened in the wee hours of the day marking my birth by a screeching, retching, gagging, and vomit covered R.A.  He proceeded to make the event more memorable by his insistence of not only rubbing the vomit into his eyes but then becoming enraged that the act made his eyes hurt.  My husband claims that the R.A. was so excited by the prospect of my birthday that he made himself sick.  I disagree and instead believe something more sinister was at hand.  It's all part of the R.A.'s dastardly plot to take over the world.  The R.A. is consistently sick on any and all special occasions and holidays.  It's so bad that I'm more surprised when he isn't sick for a special event.  I think he does it as a means to break our spirit - remove the joy and the impending despair will do its worst.  The R.A. is a master of psychological warfare.  I'm at the point where I dread holidays.  Well played, R.A.!  A few more "strep throat" Christmases and I will off my own self with the nearest strand of Christmas lights.  On the plus side, this birthday finally superceded what had originally been the worst birthday - the year I set my own hair on fire blowing out the candles on my cake.
  • I got my licensed renewed.  The only thing that made the whole experience even more harrowing was that I had to go to the RMV on my birthday.  Normally I am big fan of any activity which requires that I sit and wait for long periods of time (without my children - engaging in such an activity with my children violates certain portions of the Geneva Convention).  It's a rare opportunity where all I can do is sit where nobody is snapping orders at me that require me to fulfill them immediately if not sooner.  Unfortunately the lady at the RMV did bark at me.  As I suffer from PTSD as a result of my life with the R.A. in which all he does is bark at me, I fell to pieces.  We were doing the vision portion of our little registry tete-a- tete and she kept roaring, "Read the third row!  The third row!"  So I kept reading the third row.  The more she barked, the more flustered I became.  I panicked that I wouldn't pass the vision test - and then how was I supposed to do the McD drive-thru for those demanded "fre fies" and "keh up?" I was terror-stricken.  My life passed before my eyes.  I feared I was going to faint from the strain.  Finally I took a deep breath, stepped away from the machine and squeaked, "Do you mean the third row down or the third row across?"  We literally had our "wires crossed" as she meant down and I thought she meant across (btw - isn't "across" a row and "down" a column?)  Once that was sorted out I did pass the eye test.  As a testament to the R.A.'s strict training my license photo came out quite nicely - there is no evidence of how traumatic the whole experience was.  My favorite part about the RMV adventure was that at the end I had to give them fifty dollars. At least at the conclusion of an R.A. episode I don't have to then pay him.  Yet.
  • I inadvertently became a contestant on "Man vs. Food Nation."  For this particular challenge, I had to see if I could shovel an entire sandwich into my mouth before the R.A. boofed all over the recliner, himself, and floor.  Boof won.  But it was a close match. I am not interested in a re-match.
As you can see, I've been going pretty much full out. You know it's been a long weekend when you're more exhausted on Sunday night than you were on Friday morning - and not for any merry reasons.  It's like my nana used to say, "It's a great life if you don't weaken."