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Sunday, September 26, 2010

The Proposals

A month ago, I spent a few days at the beach with a friend and her children.  One of  them, we'll call her "G", is a gorgeous girl, blond flowing locks, golf ball sized blue eyes, big full leaps and a bright cheery smile with a disposition to match. She is 6 yrs old.  After a few sessions at the beach, something I had not deemed possible occurred. My son was smitten. Head over heels in L-U-V. It is a funny thing to see in a 5 yr old boy. It's that fresh faced, boyish big eyed smile, the excitement palpitating in his heart, the wonder on his face of feeling an emotion he has never felt.

As we were leaving the beach one day, "G" getting into her car, us getting into ours, Finbar states, "Mom, I love 'G'. I want her to marry me. How can I get her to marry me?".  My heart leapt at the thought of this emotional risk he was willing to take. I said a quick Hail Mary that the feeling would be mutual and took a deep breath.  "Well, in order for someone to marry you Finney, they have to WANT to marry you. You can't make them marry you."    "How can I get her to WANT to marry me mom?".  I seized the opportunity to do my future daughter in law and womankind a favor.   "Well, you have to be REALLY nice to her everyday and do nice things for her A LOT."  Finbar took the bait, "I know. I will bring her flowers everyday. She likes flowers, I know she does.  'G!'  'G!!' (across the parking lot to her).  Will you marry me G? I promise I'll bring you flowers everyday"  (giggles from the other car).  "Bye Finney (giggle)".



 In the car pulling out of the parking lot he continues. "Mom, this is too tough. There are sooo many girls to choose from. There's 'G', there's 'E', there's 'K'.  Ooooooh how will I EVER choose a wife? There are so many to choose from."   I thought, wait "E" and "K"?  I thought you didn't even know those girls were ALIVE and now they are in your marriage pool? What an interesting take on dating. Trying to find a wife. If only young men worried like Finbar did!  So I seized another opportunity for some brain washing.  "Finney, someone has to WANT to marry you.  In order for them to WANT to marry you, you have to treat them very nicely, with respect. And do nice things to show you care. And you have to do that  A LOT and for A LONG TIME before they will want to marry you."  "OK mom. Can we talk about something else?"  I lost him.


2 weeks later
Finbar: Mom, when you get old will you become a grandmother?
Me:  That depends on if you have kids.
F:  So if my wife has children then you will be their grandmother?
M: Yes.
F: So you will be the grandmother of my wife's kids?
M: Yes.
F: Then who will marry me???...  I know, I want "G" to marry me. How can I get her to marry me NOW?
M: Well, you cant get married now, you have to wait until you are older.
F:  Well, I know, I can be really nice to her and play really nice with her. That's a good start, dontcha think?  M:  Yes.
F: OK.

M: brainwashing accomplished :)

A few days later
F:  (to his brother) Declan, I'm going to marry "G". But don't worry you can marry "K" or "E"or somebody else.
D: Finney, I'm going to marry "E"!


A few days later
M: So how was school today Finney?
F: (on way home from school) Mom, I have to tell you something VERY important.
M: (thinking I am going to get a clue as to what he actually does in school)  What is it?
F: Mom, I LOVE "K".  I love her! Can we have a play date with "K" today?
M: (absofreakinlutely, my boys is in LUV :) :) :)


A week later, after a big playdate at the park
 F: Guess WHAT mom?  "A" and I played tag. "A" and I are friends now. Isn't that great?...Oooh, but now I don't know who to marry...I mean I think I want "A" to be my wife...but, "G" is still my favorite wife I guess....

A couple of years ago, I read a dismal statistic from one of the only studies that has tracked people with Autism and Aspergers into adulthood. Something like 4% got married.  I was gutted at the time. But I know Finbar will not be a statistic. And even if he doesn't get married, he will have tried really hard I think to achieve it and that is half the fun :)

Friday, September 24, 2010

The Humor Fairy

I wanted this to be a funny post. I have been thinking about that all week, and so i have not written until now because I have been waiting to be inspired by the humor fairy.  She must be on vacation I thought. But then I found her.I decided to try out an acupuncturist yesterday (never been to one) because I had a gift certificate for a free session/consulation.  The acupuncturist was one of those bright, sunny, cheery dispositioned pretty young girls, the kind you see at Oak Park festivals with long flowing blond locks,  a flower in their hair and a butterfly face painted on.  And she turned out to be a sort of humor fairy.  She thankfully and graciously said a lot of wise and healing things during my session, soothing words that just rolled out of her mouth with not so much as a thought. Wish I could speak like that I thought.  One thing she emphasized was "You are going to laugh next time your son does somethign to drive you crazy.  You will just laugh.", she said. "Because in that moment, it is the way it is supposed to be. It's just perfect.  You are going to take 'exhausted' out of your vocabulary and replace it with 'calm'."    REALLY???? I thought, calm instead of exhausted? GAWD that would be a divine miracle!  Lying there on the cushy table, spa music going, needles head to toe, lavender patches over my eyes, listening to her sweet sweet voice, I bought her idea hook, line and sinker. I imagined, yes, he will be an butthead, and from now on when that happens I will LAUGH instead of getting tied up in knots, and it will be a 'perfect' moment" each time this happens AND I can blog about how FUNNY his behavior is.  Tears came.

Skipping down her driveway with unbearable lightness of being that she and her tiny, loving needles had instilled in me.  The world is just perfect I thought. I am perfect. I am just going to "rest and repair, rest and repair, rest and repair".  Ahhhh.   I have not felt that utterly, deep-into-my- bones relaxed since  springbreak at age 17 lying on the beach with a bottle of tequila and pack of lemons at my side listening to U2's Joshua Tree over and over. Aah yes, life before kids. 

That afternoon and evening I had a ball with my boys.  I was calm, they were calm, we were "perfect".  The next day Finbar had his worst day ever at school.   I had warned his teacher that he was very upset that his dad went out of town and that this could affect him during school.  My instincts were as usual correct, and I was greeted at pick-up by his teacher with "Hi, I HAVE to speak to you".  Wow. She had never chatted after school with me before. Yikes. I braced myself. I was CALM.  She went through the day's woes. Yeah, it was butt ugly stuff.   I decided to speak to him later. Stay calm.

Then on the way home I had one of those "fringe" moments.  A few Kindergarten moms, two of whom I had spoken to before, were with their kids, Finbar's classmates, at the park across from our house.  We had to stop at the park on the way home to pick up my younger one whom a friend was watching.  Well after his bad day at school, Finbar was in a foul mood, loud voice, defiant posturing, clueless. I warned him sternly not to embarass me and planned to go straight home after getting Declan.  It didn't happen that way, and I found myself back in high school. Group of moms whom I should go up to, say hello and hang otu with, wanted to, but couldn't because my son was going to go ballistic and I desperately wanted to get across the street into the safe confines of my home before they saw what he was capable of.  And to boot, would wonder what kind of mom I was to have an almost 6 yr old who screams at everyone adn everything and I can't control him.  It was awkward to say the least.  I smiled, pretended to be occupied with my kids, chatted with a neighbor quickly and made the loud request to my kids that we needed to go home and get lunch.  That will be a few weeks of social regret until I muster up the courage to tell those moms what was going on. Until then, they will just think I am rude or weird I guess.  Sigh.

The tension started there and just built for the rest of the day. Until an incident at bathtime, the witching hour I call it,  threw me over the edge. Gone was the calm that sweet lady had poked into me and I lay in bed at 8:45pm EXHAUSTED.  Well I thought, I can start again tomorrow, remind myself to "replace exhausted with calm", have my Nano Greens, Cod Liver Oil, Yerba Mate and give it another go. And make another acupunture appointment :)

Sunday, September 19, 2010

Shaun the Sheep


"He's Shaun the sheep doo doo doo doo, he's shaun the sheep, doo doo doo doo, he even mucks about with those who cannot bleat. But keep in mind, he's one of a kind ohhhh life's a treat with Shaun the Sheep". 
Been hearing this British cockney tune that sounds like a pub song, in my head for about a month now. Its the theme song for my son's new favorite cartoon.  I encourage anyone to seek this song and cartoon out if you are tired of hearing "dedededed Dora, dededed Dora...blahblah Dora Alora" in your head all day long. 

When a brain integration therapist and father of two introduced Finbar to this hilarious cartoon character during a session we immediately went out and bought two DVDs for the next session, Finbar was so hooked (and I as well). We are now up to 5 Shaun the Sheep DVDs and I've just ordered a furry white cottonball of a Shaun the Sheep off ebay - had to get it from China.    Shaun the Sheep is from teh same creators of Wallace and Gromit and the movie Chicken Run. If you like the humor and wit in those movies, then Shaun is the Sheep for you.  This production company is like a British Pixar, except it is claymation and a hell of a lot funnier. I personally prefer clamation, so much opportunity for comedic gestures.  Anyway, the premise of Shaun the Sheep is that he is a sheep that does not run with the pack. He has his own ideas.  He is quite smart too. And usually up to no good. Since this described Finbar to a T, I suppose that is why he can relate. 

Recently, Finbar wanted a Shaun the Sheep lunchbox for school. I scoured the internet. Since he is a British cartoon character and not very well known in the USA, I had a hard time locating a lunchbox. None are sold or shipped to teh USA.  Given the difficulty in obtaining this lunchbox, I tried to encourage Finbar to choose a different and more common cartoon character, like Thomas the Train. I thought that his choice of a more "popular" lunchbox character might be an opportunity to share something in common with his peers. Yes I know, shallow and desperate thinking on my part.

 But then I went to school and saw the line up of lunch bags and knapsacks - Transformers, Spider Man, Batman, Skate punk decor, Spongebob, Toy Story - and thought, nevermind, fitting in is overated and expensive (perhaps with the exception of Star Wars my personal childhhood fave).  And I took a moment to rejoice in the fact that on this subject my son does not run with the pack and he has saved me lots of money in the process :)

Finbar's media tastes have never fit in really with his peers.  For all intensive cartoon watching purposes we are strangers in a foreign land. 

First there was Kipper, the lovely cute soft spoken British corgie dog.  Love those cartoons, great music, themes, simple language and art.  But few kids in the USA know who Kipper is, and even if they do, they prefer Micky Mouse or Bob the Builder. And you can't get a Kipper knapsack.

Then there was Oswald.  Another slow moving, soft spoke, simple themed Japanese cartoon.  I think even fewer kids know who Oswald is.  I personally am in love wtih this blue octopus who wears a box hat and his dachsund aptly named Weenie.

For the last year its been Pingu (the penguin) BIG TIME.  We have about 20 Pingu DVDs which I had to order from the Philipinnes off ebay.  Pingu is a claymation very slap stick non-verbal cartoon. It's Swiss made and so very clever. And I learned that David hasselhoff once recorded a rap song about Pingu.  Hm.  Anyway, I think we have met one child who knows who Pingu is.  But Pingu's lack of popularity amongst 5 yr old's in the USa is quite a mystery given the endless guffaws and hee haws that I have heard my 2 boys exclaiming with glee while watching this penguin dance on eggs and ice fish around antartica.

So there is our cartoon line-up.  you won't see SpongBob pajamas, Bob the Builder trucks, Go Diego backpacks, Wall-E posters or Mickey Mouse coloring books at our house.   I think of all teh money I have saved on "paraphrenalia" simply because my son with autism does not relate to fast moving, fast talking, busy graphics and adult themes of today's kid cartoons and movies.

Over the past few years, I figure I have saved a boatload of money because my child's sensory and socio-emotional make-up leads him to dislike what most kids are drawn to in cartoons.  So we do not see kid movies.  If you take the 3 Shreks, 3 Toy Stories, Up, Bolt, Monsters vs. Aliens, Cars, Nemo, Wall-E, Princess Frog, Ponyo, Bug's Life and tehre are so many more that we have not seen, that would be at least $300 that we have NOT spent on seeing movies.  Then figure in teh cost of the paraphrenalia. Pajams, toys galore, shirts, shoes, DVDs, backpacks, books, toys, toys, toys...and my kids have little interest in visiting Disneyland at $70 a pop.   I am starting to feel like I CAN afford that cruise to Mexico after all. Yes, life's a treat with Shaun the Sheep :)

Thursday, September 16, 2010

Shamans, space shuttles and airplanes

The world I live in - the one where as a parent you are constantly looking for answers - has presented a number of "opportunities" to seek out answers in places and forms which I would never have dreamed of searching.  Recently, I am reminded and continue to be nagged by our experience bringing a shaman, a so called energy healer and mythic poet, into our home last Fall.  I suppose lots of people at some point in their lives may consult a tarot card or palm reader or other psychic for fun.  Me, I never would have wasted my money on that - ever. But when it came to my child with autism, well never say never.  I wanted to slap myself for being excited to have a rational "reason" to consult with and pay $150 to such a person.  All in the name of recovering my son and finding out what the true cause of his autism is. But I figured, hey, $150 is cheap compared to other therapies we were paying for.   Leave no stone unturned I told myself and my husband and some close friends. 

So here we go. Enter Sudama. The first thing that struck me about this very kind, genteel soul of a man was his towering presence. He presented like a 7 ft NBA player, only with sandals instead of high tops and he was carrying a CD of groovy music that he had just produced. "Green Evolution" was the name of the CD. You get the picture I am sure. Finbar with all his honesty bluntly stated "Hello, why are you so tall?"  Amazingly, he did not have much more interaction with Finbar than this for the next 2 hours. But he had surprisingly a lot to say about Finbar.  I will summarize.  He got the "message" as he read Finbar's energy that brought to mind the phrase "space shuttle pilot".  Then he preceded to relate and try to decipher the reading he was getting about Finbar's past life. You see, it seems Finbar had been smashed to smithereens in his most recent past life death and his soul is still traumatized by that death. This would explain why he only lives sometimes in "our world" and gels with his extreme desire to become a paraglider when he grows up.  And apparently Finbar saw his death coming.  Sudama likened it to a WW2 pilot, perhaps shot down and fell to earth, all the while aware of what was going to happen. Trauma.  Sudama related that Finbar had a strong "relationship" with gravity and the earth. Again, perhaps due to his previous death, which was probably falling to earth.  Sudama knew nothing of Finbar at this point. He did not know of his constant chatter about flying, becoming a paraglider when he grew up, his desire to learn to paraglide and hanglide as soon as he could, nor the fact that he talked about gravity like it was a person and called it "his friend gravity". He didn't know that we had figured out that flying in outward moving circles very fast was actually calming to Finbar.  That he could ride those huge swings at the carnivals over and over and never get sick.  

The interesting thing was, when Sudama left I thought, "shit, why not past life trauma? In fact it isn't autism, it is trauma from a previous life. We just have to get on with life and wait for him to get over it, poor little guy".  Funnily enough, that was a much easier story to accept than autism. Hmm.  A week later, Finbar decided to check out umpteem books on the space shuttle from the library. Hmmm. Strange. Is he telepathic I thought?  We came to a page in one book that talked about the tiles on the outside of the shuttle. Finbar pointedly asked what happens when the tiles fall off. How did he think of that? I wondered.  Then as I was relating to him what happened to the Challenger several years ago, I was overwhelmed with the feeling, really knocked over the head with the idea that perhaps he had been on that shuttle. "Space shuttle pilot" Sudama had said. "smashed to the smallest pieces of the human body possible". "Relationship to gravity". "Saw it coming".  "Past life was recent".  I gave Finney a big big hug.  I felt sorry for him in that moment.  Maybe it was him in the Challenger that fateful day. Maybe he has autism.  Which story would I choose to believe?

Well, it just so happens that Finbar's love affair with all things flying and fast continues and has reared its head lately. The latest story is that he will be an airplane pilot and will take flying lessons as soon as he can read and do math.  So maybe it was the WW2 pilot I think....which story will I believe? And how did I ever get to a place where I give sincere thought to the question "did my son have a past life?"

Saturday, September 11, 2010

Defining the Fringe

Today is September 11, 2010.   9 years ago today, I was driving in an open air jeep with my dad and husband on the isolated and dramatically beautiful West coast of the island of Crete. I recall vividly the hairpin turns and the feel of the strong warm wind in my hair.  It seemed that we had reached paradise and there were no thoughts in my mind, just pure mindless bliss.   Well, everyone knows what happened that day. We didn't know at the time though. We were insulated for another 24 hours from the horror of knowing and even after that, for many days, we were saved from the palpable fear and anxiety that so many felt on my home turf.  But actually I am not writing about this day to commemorate 9/11, rather my mind keeps drifting back to that day 9 years ago, and the fact that at that time I had no children, no job and really not a care in the world. I relished that feeling. Free. Free at last. And I miss that freedom most days.  This is the kind of thing you hear from parents of young children all the time. "Ah yes, that was during my life BEFORE kids" or "that was in another life - BEFORE kids" or "God I miss my life before kids". But I think "ahh, I miss my life before the stresses of autism came along".  And like most parents, I never really want to go back to that prior life, but it's nice to dream.

My third life, the one on the fringe, began when I first received the phone call from a certain Dr. Black one evening.  I had taken Finbar in to see him for a cold. He had noticed some things were amiss and called to tell me so (God bless him for being so brave).  He suggested I have Finbar evaluated, stating, "I don't think it's autism, but there are some signs".  No need to freak out I told myself.  In fact, I had known that is was likely autism, in my gut for a while, but never uttered the "A" word to myself or my husband.  I had been researching once or twice in the previous months that "A" word, basing my suspicions purely on instinct and the fact that I knew in my gut that something was wrong with my child.  Finney had had all the now frequently reported signs of regressive autism.

So now, from that day on, I had three lives - the one before kids, the one during which I was blissfully ignorant that my child would forever struggle and be different in this world, and the one I live now - I call it "Life on the Fringe".

This blog is for all of those parents and relatives who do not live within the "norm" of what is so (strangely at times) popular and common for families of today.  It is for the parents who, like myself today, and unlike most of our friends, have not attended the first Saturday AYSO soccer game of the season with their 5 yr old son. Because as he so rationally explains to me "in soccer they don't kick the ball back to you".

It is for parents like myself, who chose not to attend a good friend's birthday party today because the moody unpredictable nature of a child with high functioning autism added with the fact that he had a tummy ache yesterday could make for a thousand apologies and days, even weeks of regrets for taking that risk on him.

What do you do? Wear a t shirt that says "BEWARE: I know my child APPEARS to be normal like all the others here, and I SEEM like a great mom, but his barely detectable autism can FREAK HIM OUT and make for an embarrassing scene at any moment".  That t-shirt slogan is the modus operandi of a family living with a child who has autism.  Particularly high functioning autism like mine.  You see the problem with high functioning autism, the curse of being "lucky in our unluck" as my husband likes to say, is that by 90% of appearances, my child appears to have the same normality, development and functioning of his peers.  However, that other 10% is unpredictable, ugly and NOT NORMAL.  That 10% is what I call "the fringe". We live with it, on it and in fear of it.

Because we live on the fringe, we live a sort of double life - a life of "inclusion" to borrow the special ed term. And a life of exclusion.  Living two lives can make parents like me feel schizophrenic and paranoid.  After several years of leading this double life, at the suggestion of my sister in law, I decided to start this blog both to help myself work through these feelings of schizophrenia, but also to let other parents know that if they feel they are living on the fringe, be it with an autistic child, or just a child who doesn't' fit into our cookie cutter society, they are not alone.  And I hope that those parents who do not have to deal with these issues can appreciate the unique qualities of their own "normal" children and understand why a parent such as I might appear overly stressed, anti-social or even to have multiple personalities at times.

We all need to appreciate the children God has given us, cookie cutter type or not. They have much to teach us. If we stop expecting every 5 yr old kid to play soccer for a moment, and open our minds just a bit, we may learn more than we ever dreamed of from these kids. That has been my lesson thusfar.