This...

~"Welcome back my friends to the show that never ends..We're so glad you could attend..come inside come inside.."~Emerson,Lake and Palmer

             

         






                 Annnnnd another month of awareness is upon us...another month where people scramble to put on their ribbons..and sign up for walks..The Empire state building and other places "Light it Up Bluetm"!..This is it! The one month a year where people on the autism spectrum exist matter! Better make it MEAN something! Sparkle everyone-sparkle! Oh how I hate it..

   

  Don't get me wrong..I think that it is important to know about all kinds of people..to celebrate diversity..to understand that people come in all shapes, sizes..neurologies!...Those are wonderful things to celebrate..explore..learn about..But come on..does everything need a ribbon? Good lord-I could cover myself head to toe in the various ribbons of every possible cause and not have to worry about clothes for days.. And light bulbs! There are actual blue light bulbs that you can purchase to "Light it Up Blue"!tm ..to...I don't know..let people know you are extra aware? Extra aware and enjoy looking like a vampire? Doesn't anyone realize that blue lighting makes them look awful? I just don't get it. Autism awareness month has been around since the seventies..I'm pretty sure that people get it by now.(cue drum roll and cymbal crash).Autism exists. Now what?  

  I have to admit-I'm kind of worn out-worn down by all of it.  I have terrific kids...they are (for the most part) responsible, caring individuals...they are all somewhere on the spectrum. I say that because it is important to understand that while they share a diagnosis-each of them are different from each other.That's autism. It isn't one way-it is many different ways. What is significant to one person may mean nothing to another. *sigh* it sounds simple...but it isn't..

 This is the month where people(on-line) go out in full force...There will be the "How dare you write about your kid that way posts" followed by "the "How dare you say being autistic is amazing! My child, My life is deeply affected by all this!" posts and the "I feel guilty because it isn't easy and my life is falling apart posts" with (of course) the "You should feel guilty rebuttal" posts.  The on-line autism "community" is not the same as when I started blogging. Instead of supporting each other-we fight..instead of listening-we react...Instead of changing the world-we stay stagnant.

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  I can not sit here and say that autism is the greatest thing that has ever happened to my kids...and I can't say that it isn't..because I don't know.  what I can say is that these are the children that I have been blessed with. That is it. It has not always been easy..sometimes it is downright terrifying-There are far too many nights when I don't sleep..I toss and turn-overwhelmed by fear..and the "what if's" ..the feeling that I should do more-and the guilt when I don't feel like doing anything..or worse-when I think that I haven't done enough-could have done more-should have done better. And the future!  What. about. the. future?! EEEEK! Sometimes, I just want to run away.

 I usually write a post every April..Something about awareness..blah blah blah...and I suppose that this year, I'm doing the same thing...But as I sit here writing..my daughters are in the room..Zoe, has decided that anytime Lily speaks...she is going to dance to Lily's words..with great gusto..Which is extremely funny to everyone...but Lily..at first...but she eventually breaks down and joins in-and in the background..Oscar is eeeing..and Sam is drawing and talking to Omar about his ideas..and the cats are winding around my legs and the kitchen is a mess because I've been baking..and.I look at this...soak in this family of mine..this cacophony of sound and smell and mess....and it is as if a light has gone on..(it is not blue) THIS...this moment of absolute chaos-and harmony...it is all of it- mine. This absolute joy shrouded by uncertainty-THIS is my awareness...Our awareness...and it feels just fine..

Little tiny pieces of contradictions..

~"Gonna keep on tryin' 

Till I reach my highest ground"~ Stevie Wonder

    

        A long time ago, when they were little, I had thought that if we made it this far-that this was the time when it was  going to get easier...that-because they were older..I would need to do less..That somehow they would magically turn into thoughtful young adults with a general idea of what they were going to do and how they were going to do it.  I had images of all of us sitting down with a cup of tea..I would be dressed in an adult sort of outfit..(not the fleece leggings and tee shirt I am wearing now) my hair would be brushed (unlike now)...and we would..I don't know..talk about adult sorts of things..and then (after they rinsed out their cups and put them in the dishwasher) off they would go..to do these adult things...and Omar and I would stand arm in arm in the doorway and wave them off ....and then??  I never dreamed about what fictional Omar and I were going to do after sending them off...perhaps we'd go where all the old couples go...to the early bird special-(dinner at three in the afternoon) and then home to watch Wheel Of Fortune,,,until bedtime or death I guess...It was a weird fantasy-I mean, I don't even like tea! But, I guess it was one of those things that got me through the tough times...before potty training..when I seemed to spend hours just looking for shoes and fixing snacks...and going to appointments...and finding shoes....

  Now, we are actually here...sort of. They find their own shoes-mostly, fix their own snacks...and occasionally put their dishes in the dishwasher. There was a time when I really thought that I'd be eighty years old and still filling snack bags with goldfish while herding them in to the mini-van..so that we wouldn't be late for my podiatrist appointment..

  I am just not one of those people who has ever thought "they grow too fast"..I've never mourned their childhoods...never wished them to be small again-hell no! But at the same time..I never gave much thought to their actually leaving. As in they were REALLY going to do it. Fantasized? Yes....But now that we are here...I'm not sure what I think...

  There is just so much more that they need to know...little things-the stuff you take for granted..The other day, I asked one of my kids to clean the sinks in the bathrooms.  They were icky-covered in toothpaste and all the other stuff bathroom sinks get covered with. I didn't really think about it...until I came home...The inside of the sinks were spotless-pristine even...the outside-where all the icky stuff was?  Not so much..."Hey bud?  I thought that I asked you to clean the sinks?"  "I did!"..."But...well...there is toothpaste and junk all over them..".."But you said to clean the sink...you didn't say the outside parts!"  *sigh* He was right-I didn't. I did not specify in exact detail what I wanted him to do.....THIS is the stuff that I worry about..the little bits...,the minutia..the details-oh how the devil is in the details!
I know-it sounds like nothing..but really?  These are the things they need to be able to figure out as they move on with their lives.  I feel like there just isn't enough time in the day..in the week..in the month...like I'm in some sort of RACE against time...If I don't teach them how to get from A to B...how will they ever get to C and D..and all the other letters? Their growing up has me in a tizzy..So much so that I sometimes forget..how far they have come...and how much they already know...

I don't  understand how...but my Oscar seems to have this sixth sense when it comes to me and my worries...The other night, he came to me and said "Mama?...What is the meaning of life?"..( He just blows me away sometimes) I said something along the lines of.."I think that is a question that humans have been asking since the beginning of time..what is our purpose?  Why are we here?..I don't think that there is really one answer..do you? "..He looked at me and said "I think that we are just supposed to live it.."

Out of the mouths of babes...

The number one rule of our family is "Be who you are" It is our mantra-our motto..The one thing that I have insisted upon since they were old enough to communicate..Yet here I am- worrying about who they aren't.  I do not like this about myself.  It makes me feel like a hypocrite...One hand is pushing them out while the other is having a hard time letting them go.  The world is not always the kindest place-especially if you are different. They know that because I tell them...But I also tell them that there is a place for them in it..that they belong. I know!  It is a total contradiction-and I own it. It is something that I have to work on in myself...Work I will...because it would be all too easy to give in to my anxiety..all too easy to convince them to stay...all to easy to convince myself that this is what they want to do. But what would that accomplish?  As Oscar so accurately put it-Life is supposed to be lived...

  My kids know that no matter what-they always have a home with us..Always. I think that knowing this..knowing that they always have a place to go to-encourages them to dream..to look ahead..to think about taking those steps towards living their own lives..It comforts me too..especially on my darker days..when anxiety is trying to take up residence in my head...I  just have to remember to breathe-Remember to be in the present..Remember to go over bathroom cleaning techniques and to brush my hair....the future although scary-is just that-the future....and it IS theirs.      

   

  

Wrestling in my head...

~"Speak out..you got to speak out against the madness..You got to speak your mind if you dare"~David Crosby

        

                           On Wednesday November 19th, 2008, I wrote my first ever blog post. It was in response to a show that Oprah.-Goddess of the daytime talk circuit(at the time)..did on the subject of autism.  I wasn't new to Autism-but I was new to how the world generally looked at people like my kids.  I had sat there and watched in absolute horror-her hour of tragedy..You know the kind of show...where there are a lot of close-ups of Oprah looking concerned..sometimes emotional (compassion close ups-because Oprah FEELS such strong FEELS-and she isn't afraid to show them..oh brave brave Oprah..sharing her serious sorrow deep feeling face with a billion people looking on...(I hope that the paycheck was worth it) using her quiet serious voice...There will be NO smiles when suffering is discussed...and oh was it ever discussed. Parents interviewed amongst piles of laundry...messy houses..wearing sweatpants and mourning the life they no longer had.  It was an hour long eulogy that Oprah spoon fed to her audience and they slurped it up along with the fine whine narrative.  Oprah said kids like mine were a tragedy-and thus in main stream media-it became so. I was pissed. I even wrote in and said "Hey!  look at my kids!  Look at my family!  You got this all wrong! I even invited her to my house-"meet them" I said,,"My kids are great! Their lives are wonderful!"...there was no response...I hadn't really expected one. But, like I said-I was pissed.  How dare this woman who had so much power-so much clout..so much sway..how dare she?  Thus-my blog was born...

  When I started up on this blogging adventure, I didn't know any other parents like me...didn't know any autistic adults..all that I knew were my kids-and being that they are pretty terrific..I thought that writing about them might do something...give a different perspective..show people that we were really just like any other family...we had our ups and downs-like any other family...and sometimes, we were even funny..I never expected to be read...and I was kind of thrilled when I was. It has been a great experience so far. I felt like I was making a difference..small as it may be...I was contributing to making the world a better place for people like my kids..I was DOING something. 

  Over the years, It seems as though I write less and less...well, actually-Ijust post less and less.(I'm always writing) It's just that  everything that  I write about kid wise-requires their approval, If they aren't comfortable-I am not going to post it. They are in the uncomfortable years.   Maybe some day...when they are older. And they are getting older..They continue to grow and thrive in their own ways..In one sense, we are coming to the end of parenthood,,and taking on more of a roll as mentors. Our house is very different from what it was eight years ago.  We no longer have a t.v. blasting 24/7..Thomas the tank engine is dead (hooray!) My Little Pony has found its way out of the house and has been replaced with writing and drawing...Oscar is becoming quite the swimmer,,,is about to join basketball,,,and wants to create a YouTube channel about growing up in this family.. Sam is spending his own time researching comparative religions for his comic book series... Our kids are looking outward and forward because we have guided them to...I mean, that's our job isn't it? To push them into making decisions and choices that have nothing to do with us. They are their own people.-and while we remain very tight as a family...they are finding their sense of self and purpose in their own right. It's scary..and beautiful at the same time. Parenting is very powerful...how easy it would have been to convince  them to stay still...to stay with us...to create an illusion of safety where they would be afraid to do anything away from us..it's a slippery slope...and so far we have managed it-until now...

  I think that every parent fears their kids going off on their own at one time or another for one reason or another.  In our case-it's autism.  Will they be accepted? Taken advantage of? Abused..neglected? Read the news-those are very real fears..At the same time-we have raised our kids to be true to themselves...to love who they are..to be responsible young adults in a world that doesn't always take responsibility for much of anything. It's a leap of faith-sending them out there...But it is the right leap.  They belong in the world..they deserve lives and adventures away from home. Our want for them to have this trumps the major anxiety that I have over them getting it.I am letting go-a breathe at a time....and then...this election process started..

  .Actually, it started with the attack on Paris...one of our kids caught a part of the news...she only heard the words...capitol city,,,shootings and Muslim...I was in the shower and was not aware of her panic...she ran to the phone to call Omar (who works in our state capitol) to see if he was safe...begging him to come home. She is twelve years old...and she like her brothers and sister are of mixed ethnicity...They are Arab...We have family across the world who are Muslim...my girl is anxious and afraid..and there is nothing that I can do to help it...not really.  Not when the "adults" either politicians...or people on the news..speak with such vitriol-such prejudice..such bigotry and hatred. That we as humanity- ALLOW this..is beyond me.  This isn't freedom of speech-it is freedom FROM responsibility.  We have tried to shield them as best as we can...but these things leak out....My child..my beautiful girl feels like her family is a target in her own country. How do I reconcile that while at the same time encourage them to go out in to the world because they have a lot to offer it? Good lord this parenting thing is tough...between raising kids, wrestling Oprah (verbally in my head) and some of the current candidates..I'm feeling rather lost...worn..while at the same time looking for answers. I had thought that maybe the world was changing in small increments...but now, I'm feeling back on square one.  How can I hope that things could ever get better for disabled people...i.e. acceptance and inclusion-services..if we can't even accept different ethnicities..religious beliefs,sexual orientation,skin color..or even responsibility for our words? It's times like this that I find myself desperately looking for a parent to give me the answers,,until I realize that I am the parent and I don't have any. My hope is that in another eight years, if I'm still alive...that maybe just maybe,,things will be better...and I'll be posting from my rocking chair..and my biggest worry will be if my kids will make it home for Christmas...No matter where I am-I know that I will always hope...and dream..speak out and wrestle with characters in my head...

To all my internet friends..Happiest of New years...