Saturday, April 19, 2014

Twenty shades of Cadbury...and the story of our Easter bunny..

 ~"You know an odd feeling? Sitting on the toilet eating a chocolate candy bar."~George Carlin

 Every year at this time..I practice a little indulgence if you will... 

 At about 7:00 each night, when I know that the kids are occupied..I sneak upstairs to my bedroom.  I quietly close my bedroom door over-but I don't shut it completely. No! Shutting it would only incite would draw my kids like moths to a flame. 
"What's she doing up there?"
 "Why did she close her door?
" Knock knock knock..
"Mama?" "MAMA??!"..
That is exactly what I don't want! So I have to trick them...make them think that I'm not doing anything special..nothing to see here folks!..I'm just doing regular every day kind of's boring-AND I might ask you to help..(It works)...So, I close the door over..and then freeze. I perk my ears to listen..have they noticed I'm missing?..Are they still busy? .Is there enough time? .If I can answer yes to all three-I proceed with the operation. Slowly..oh so slowly, I open my drawer and gently...very delicately  pull out (cue heavenly light and angel voices) a thing of great beauty! A joy to behold!  A beautiful foil wrapped Cadbury caramel filled chocolate egg..Oh! Glory in an orb! Creamy chocolate and buttery caramel and it's ALL MINE!!..MINE!!!   With the agility of a cat, I vault up on to the pillow laden bed, egg in hand and turn on the t.v.-not too loud!...just enough to mask the noise-

(my girls can recognize the sound of a candy wrapper being opened from miles away-not only that, they can discern whether it is a chocolate candy wrapper-or something less appealing like Swedish fish).. 

and slowly I start to peel the foil down from the delightful  39 grams of chocolatey delight...all the while thinking...should I bite the top off?  Eat the caramel first? Split the egg in half? Oh the choices! The wonder! The anticipation!

I ravish my chocolate as I lay back on my pillows.. sated...I go back downstairs and start the laundry.

It is the best twelve minutes of my day.

Sadly, my ritual came to a halt last night..Oh, I took care of the door...retrieved the egg...went to turn on the t.v.-but it wouldn't work!  It seems that Oscar has reprogrammed all the t.v. settings to Spanish..and I could not for the life of me figure it out. Without the t.v., the wrappers would be heard...the jig would be ritual has alas-ended. But, with only two days until Easter..I can wait.  The kids will have their own candy-and I won't be forced to share mine. Although it was good while it lasted...

This year-in honor of the Cadbury egg, I decided to revisit and revamp an old post .I can not get over how little Sam was when I wrote this. He has since grown three feet and no longer fears the Easter bunny.... 

  It was the night before Easter, and they were all excited. That is, everyone but Sammy. 
Sammy is terrified of the Easter Bunny. This fear goes all the way back to when he was eighteen months old. It was a few weeks before Easter and we were out shopping at the mall. When (seemingly) out of nowhere, a man with a GIGANTIC paper mache bunny head jumped out in front of us. I have, to this day, NEVER heard Sammy scream so loud nor saw him move so fast. He flung himself on top of me-clinging and clawing his way up my body. If he could have, I'm sure he would have climbed back into the womb.  Needless to say, he has been wary of the Easter bunny and any other large headed costumed character ever since.  This bunny phobia wasn't a problem at first. We simply decided not to celebrate Easter. He was a little guy-he didn't notice, or care.  But, now that I have three more children, one of whom is very aware of all that Easter can be.(.i.e. unlimited candy for the day ) I have no choice but to acknowledge it. At the same time-I had to make it acceptable for Sammy.

I tried to explain to him that I was the Easter bunny. That I bought the candy and set it out in baskets while he was sleeping. He interpreted this as meaning that I went and picked up the candy from the Easter bunny. He literally thought that I met the bunny in a prearranged location outside of the house and brought home the baskets. He believed me to be brave. This went on for years...I let it.

I always pictured it as a covert maneuver. I would go outside-at midnight, dressed(of course) in all in pastels. The night would be silent and still...I would stand in the middle of the street and pull out a candy cigarette to signal I was there.. In the distance, I hear the sound of floppy feet moving in my direction...I look up, and there under the streetlight,  in all his cotton tailed glory, would be the Easter bunny. He gazes at me with his steely and unmoving pink eyes...the wind gently blowing his enormous bow-tie and the tufts of fur on his ears. This is a bunny who has seen things-he knows stuff.. He says nothing as he passes me the basket-and with a nod of the head and a flip of his tail, poof! He is gone. Only the basket in my hands and the sound of hopping in the distance, prove that he had really been there.

This year, things were different. Sammy was more nervous than usual. He startled at every noise.."Was that the Easter bunnies car?"..."He doesn't drive buddy-his feet are too big"..."I think I hear him on the roof!" "Sammy, he can't jump that high...and besides, you know that I won't let him in the house.." "Maybe he snuck in...maybe he's upstairs!!!" "No buddy-I promise he is not." Our conversation went on in this vein for a while. I felt that I had no other choice but to tell him the truth...explain it so that he could understand. I said "Sammy...can I tell you a secret?...You have to promise that you won't tell your brother or sisters.." He agreed. "Buddy, there is no Easter bunny. I buy the candy at the store, I buy the baskets, I hide it in my closet until you are asleep. Then I bring it downstairs....O.K.? Does that make you feel better?" His relief was palpable. I asked him if he was alright with this...if he wasn't a little disappointed,,that even though he was afraid, the fantasy wasn't real. He looked at me and said " It's o.k. mama, I never wanted to see that big headed freak again anyway." He rolled over and promptly went to sleep.

No matter how you celebrate-or don't..I wish you all a lovely chocolate filled Sunday....

Friday, April 11, 2014

Inclusion means everyone-or when special isn't open letter to Special Olympics Maine..

  To whom it may concern-or Hey Person who picked the venue for today's state swim meet!

I sat at the special Olympics today. It should have been wonderful.  It is not often that people with disabilities (either physical or developmental) are able to get together without judgement to participate in sporting events.

But it wasn't wonderful. I sat there and quietly seethed because I knew of at least one individual who worked equally as hard-but was unable to participate. This was not through any fault of their own-it was simply because the chosen venue had no hoist to help them into the pool. Imagine that-a "Special" Olympian excluded because of the very thing that made them "Special". Equally as unthinkable-a Special Olympics venue that was not fully handicap accessible! It boggles the mind.

Yes, there were people who were eager to help-"We'll hoist them in and out of the the pool ourselves-whatever it takes!" To add fuel to the fire-there were no accessible changing rooms for this person."Oh we'll let you use an open area and stand around them holding up towels." While I am sure that these were well intended suggestions, that there was no malice-I am equally sure there wasn't any real thought behind them either..This is a human being. Someone with thoughts, feelings, a personality. A person  deserving of dignity and respect. Someone who wanted their moment to shine-not for the spectacle of being hauled into a pool by strangers-or made to change behind a shield of towels-but because they were an athlete-a participant. Accepted and Included.

  Oh sure, I heard the excuses-when someone complained about this athlete being excluded, they were told- "You find a venue big enough to hold everybody!"  That doesn't  make sense. Really- what is more important?  A venue big enough to hold all the athletes or a venue that accommodates all the athletes? Had people known there was an accommodation issue(meaning  more than two days before the event) maybe they could have found a way to rent a hoist-or fund raised to buy one. Maybe a smaller more accessible venue (spread the event over two days) could have been used. Who knows what could have been done.  I do know however, what should have.

  I thought about this as I sat there today-watching all of the happy faces-seeing the pride in accomplishment, the joy in success. I sat and thought about the person who wasn't there-who didn't get their moment and wondered how left out they were feeling.  I looked around and saw all of the bright yellow Special Olympic tee-shirts - emblazoned with "Inclusion" "Friendship" "Unity" "Respect" -all such lovely sentiments. I tried to measure those sentiments against the person who wasn't included...and sadly realized that today- they were just words. .

  That athlete (and any others that may have missed out today) is owed a big apology. Accessibility, accommodation and inclusion-especially in the Special Olympics, should NEVER be an issue.Nor should they only be words on a tee shirt. This was unacceptable.

  As the mother of a "Special Olympian" and of other children with disabilities, I have heard far to many times about why my kids can not be included in some things. I can't tell you how much I loathe the sentiment "The needs of the many outweigh those of the few" I did not however expect that attitude to bleed in to the Special Olympics. I am appalled.

Kathleen Leopold

Saturday, April 5, 2014

The other eleven months...

~"There are things known and there are things unknown, and in between are the doors of perception"~Aldous Huxley

 I'm kind of hiding from social media at the moment...well, really-for the month. The "awareness" stuff is starting to tap dance on my last nerve...almost to the point that if I see another "1 in 68"meme..or "looking through the world through his/her eyes blah blah blah" thing I'm gonna explode.  Really, a big messy pile of blood, guts, coffee and chocolate all over the place.  So, it's better that I lay low. I admit, I am jaded..which is part of the reason I'm staying away. I remember what it was like when I first started blogging five plus years ago-more importantly-I remember what I was like.  So, I try and cut some slack. Everyone's journey is their own-it isn't my place to question or criticize them.  I wish them safe travels. 

  The thing of it is... I'm frustrated! Every April, I see the same thing.  Lets all be aware! Honestly, how much more awareness do we need? What does awareness mean or even do anyway? How does it HELP individuals with autism?  Does it help FAMILIES who are struggling with aggressive behaviors? Does it bring more funding to schools? Job training? Does it help to EDUCATE other people (honestly) about autism?  Does it stop a child from wandering? Does it help me figure out what I am going to do if one of my kids can not live a fully independent life? Yeah, that's a big worry. I have to die one day. I'm scared.  What happens to that child when I die? I'm all too aware of the lack of resources, supports and services. In fact-I'm just as aware as I was last April...and May and June.. After April, where does everyone else's awareness go? I almost want to break into a folksy parody.."where has all the awareness gone..long time passing..." Is the world only aware of autistic people in April? Where do they go the other eleven months? 

  A few years back, I had the kids out trick or treating for Halloween.  At one of the houses, the gentleman giving out candy was in a wheelchair. Oscar-being the social boy that he is..loudly exclaimed "Hey-nice wheelchair!" There were many gasps! I mean, my boy actually commented on someones wheelchair. Oh the humanity! The thing of it is-he meant the compliment. He saw nothing wrong with commenting on what was certainly a part of the gentleman's life.  He ACKNOWLEDGED that man...disability and all.  He didn't talk around him..pretend that the wheelchair wasn't there. He acknowledged him-as a person.  *sigh* We are so ingrained to pretend not to notice...or even GASP!  ADMIT that we see anything different than the norm. Oh we talk a good talk..pretend that we are all AWARE-but really-are we? It seems that we simply aren't allowed to acknowledge our discuss ask questions. Instead, we hide behind ribbons and puzzle pieces and blue light bulbs..and (for gods sake!)  even chocolate bunnies! (seriously-there is a brand of chocolate bunny with the puzzle piece on it!)  Maybe it makes people feel as if they are doing something...I don't know. It just feels superficial to me. 

No, I'm not suggesting that we all immediately go out and start interrogating anyone in a wheelchair, or someone of a different skin tone, or sexual identity etc. etc..but maybe I am- just a little. Maybe it is time to openly recognize and discuss differences..recognize and discuss disabilities. Recognize and ACKNOWLEDGE that underneath all the labels-we are all just human beings. Maybe even come up with some solutions? Awareness without acknowledgement is just a word.  

  So, I'm going to lay low for the rest of the month. Stay out of the fray..and just keep on doing what we have always done. Raise my kids.  Who-will be taking over most blogging duties here until May.  my next post will be from my ten year old.  It should be interesting. 

Saturday, March 29, 2014

15, autistic and wary of awareness....

 ~"These are the things that require neither signs nor       labels. Churches, coffins, and urinals all proclaim,
This is what I am.
No questions asked."
~ Andrew Smith~Grasshopper Jungle

  Autism awareness month is about to rear it's weird head..and I have been wondering (after five plus years of blogging)- what more I could say about it. By this point everyone is aware-so, now what? Really? What does awareness mean or do anyway?  This past week-I have learned what it means to my Sam.(I didn't even know that he was paying attention..*sigh*) He is fifteen, autistic..and one of the best people that I know.  He doesn't like the "lighting it up blue" or the puzzle piece symbolism.  In one conversation, he equated all of that with Nazi Germany-telling me that he felt as if he were being marked much like the yellow star or pink triangles from then. He makes a lot of sense-and, being autistic-he has even more of a say in what this month represents to him than most other people. The following (in red) are his words-his thoughts.  the drawing is his as well...So, without further ado-I'm going to kick off this whole awareness month with the thoughts of my son. These are his words.

This month always separates us into two groups-the "afraid" and the "feared".  The afraid, not knowing what autism is- create hate (or the opportunity to abuse) making the "feared"(autistic peoples) lives miserable. The people trying to "help" are filled with pride which makes them feel special.  They always talk about the problems, what "they" can not do and NOT what they CAN do.Making not only themselves blind..but even some autistic people as well- especially when they try and embrace this blindness. They blind potential.  Another part of this parade of abuse...this march of madness..makes siblings who don't have autism look like their lives are miserable. But, the saddest part of this is that a lot of people are too blind to see the truth.  Please end the madness.

Saturday, March 22, 2014

There are no dingo's in Canada.....

~"She needs wide open spaces
Room to make her big mistakes"~Susan Gibson


 When I was fifteen, I knew everything. I did! I knew how the world worked..I knew what I was going to do and how I was going to do it. Everything was crystal clear-black and white-simple. There was no telling me any differently. It was my life and I was going to live it. My parents did not agree. But..after a series of..what I like to call "learning experiences"(my parents would probably have called them "legal issues") It was decided that home was not the best place for me to be. So I left.

  Fast forward thirty four years and I no longer know least, that is what my fifteen year old tells me. The thing of it is-he's kind of right! I am finding that I have lost all sense of what I used to know. I blame my kids. Until I had them-the world was a wonderful place filled with adventures just waiting to happen. After kids-it became a murky place filled with menace..and bad things just waiting to happen. Gone was the happy go lucky slightly irresponsible woman .. replaced by a paranoid loon of a woman who thinks that bad people(or dingo's, werewolves...zombies ) were lurking behind every tree and or bush just waiting to harm her babies!    *sigh* I need to find my fifteen year old self again. Not just for my quickly growing kids-but for my own sanity as well.

  Last week, Sam went on a three day school trip to Quebec. That in itself is amazing.  The kid who we were told not to expect much from- went away with his classmates-for three days! Out of the country! How amazing is that? My boy continues to astound us-daily. When we first heard about the trip back in September-we thought it was a great idea.  In fact, we continued to think it was a great idea...until he left. Then, for whatever reason-my paranoia kicked in. "He's going to a different country! What if he gets lost? What if loses his money? Does he have enough socks?(I gave him 10 pair) Are there dingo's in Canada?" I was crazed..pacing..panicky...mostly because forgot his phone. The special phone that we bought BECAUSE it would allow him to text us from Canada.  The phone that caused Omar to drive in a Keanu Reeves-esque fashion chasing the bus(for a half hour) in order to try and get it to him-he didn't. The phone that he INSISTED he had as he got on the bus-but that I found happily charging in his room when we got back from dropping him off.  Yup-THAT phone. Which led me to rant "I trust him to go out of the country and he forgets his phone-what was I thinking??!!!"  Yup, I was a mess...and it was kind of ridiculous. I admit it. I worried for nothing.  Sam found a way to contact me...and I have some lovely friends who also checked in on him for me. My boy problem solved all on his own..which is what we have raised him to do...which is what he is supposed to do..So why do I have such a hard time letting go? It isn't fair to him.

  When I was fifteen, I didn't have a cell phone..I probably wouldn't have used it if I did..well, at least to call home.I spent a lot of time running wild..leaping before I looked..the hell with consequences-I lived in the moment. Sam, is my polar opposite. He's cautious, he thinks things through...and although he may be a little absent minded at times (PHONE) he is so very responsible. How fabulous is that? And yet-I still worry..although after this trip-maybe not as much.

  Sam came home a different person..or maybe it was just that I was able to finally fully recognize who he is. High school hasn't been easy for him. We live in a very small town-and while mostly everyone has been very open and accepting of him-it is a double edged sword-because he is also known as a special needs kid.  A label he wants very much to get rid of.  He just wants to be "Sam." A kid who does all the things that he does for no other reason other than that is who he is. Maybe I need to look at him with clearer eyes as well. Maybe I need to remember what is was like to be fifteen.

  He came to me the other night and said "Mama...sometimes I worry that I am never going to get out of this town."  Of course I did my best to reassure let him know that he would indeed leave one day-sooner rather than later...that he would find his place and his people...and while I believe these things and know in my heart of hearts that they are true-it still hurts me to see him struggle in the now. I owe him more than I am giving him at this moment. It's time for me to start trusting in who he is.An amazing and decent young man who I am totally blessed to have in my life.

  Right now, we are looking at Summer programs for him..someplace he can go away to..where he can find his feet..spread his wings a little..makes some mistakes-own his who he is.  As long as he remembers his phone...and their aren't any dingo's...or werewolves...I should be o.k.  

Saturday, March 8, 2014

All dogs are service dogs...

~ "Dogs have boundless enthusiasm but no sense of shame. I should have a dog as a life coach"~Moby

I'm not a religious person..Although I do like the idea of heaven.  Not as a place you get to go to because of your beliefs-but rather, because of your actions. In my imagination, heaven would be run by dogs. Dogs have no guile. They live in the present for the present. Wanting nothing but food and affection-and returning the latter in abundance and unconditionally.

  It was almost twelve years ago that Charlie entered our lives.  At the time, I had two yet to be diagnosed boys (3 and 8 months old) who seemingly never slept. Sam, had stopped speaking a year and a half before-and Oscar never seemed to stop screaming. We didn't know what was going on-or what to do to help them.  We were living at out wits end. being the way that we are..did what we always seem to do best in times of great stress-we added to it! Enter Charlie-a rambunctious 8 month old yellow lab. Charlie needed a home..and we thought (actually we really weren't thinking) that we needed a dog.

  I remember the day we brought him home. (We had driven eight hours down to N.Y. to get him and immediately drove eight hours back.  Charlie had been living all alone-in of all places, a mansion...with only servants to take care of him.  He even had a swimming pool. But-he didn't have a family. So we rescued him. Or so we thought.) He bounded up in to the house and came racing out with a dirty baby bottle in his mouth...and then a dirty diaper...and then some garbage. *sigh* The next eight months were filled with his misadventures.  He ate my futon. and my shoes...and lots and lots of diapers. He was so energetic and full of life. Escaping into the woods whenever I tried to leave the house..shredding rolls of toilet paper when I did manage to get out...and to my absolute mortification..running over to the Baptist church that was next door and peeing on the giant cross in their garden-but only when the congregation was present.  I swear that he spent most of his first year laughing at me..especially as I chased after him in my pajama's or other interesting outfits.Our Charlie had a wicked sense of humor..

  He calmed down a bit after that first year..(.although he did occasionally wander off in the early morning hours..making me chase after him...again-in interesting outfits) Choosing to spend his days either at my side or lying in the sun...usually in a place where I was sure to trip over him..The thing of it is-he was always there.  From the first diagnosis eleven years ago, to the last four years ago. He has weathered crying babies, massive meltdowns..sleepless nights..climbing toddlers..birthdays, deaths..everything tumultuous plus all the wonderful that make up this life of ours.  He was part of our family-and we were his pack. My constant companion.  All he ever seemingly wanted- besides his ears scratched..or my lap to sit on(all 125 pounds of him) and the occasional garbage pail mistakenly left open to eat out of-All that mattered to him-was to know that he was a good dog.

  The years caught up to my boy. His vision, his hearing..his hips..they were all gone. And although I could have prolonged his life...let him slowly waste would have been for us. Knowing him-he would have stuck around...again-for us.   We owed him more than that.  We owed him peace.

.Yesterday, we took our last walk together. He and Bandit (another one of our dogs who deserves his own post) took their last steps-Omar and I walked beside them, as far as we could.. Holding Charlie on my legs and Bandit in my arms as they woofed their last woofs, breathed their last breaths..slept their last sleep.. It was peaceful, serene..and in its own unexplanable way beautiful.. My lovely, velvet eared, yellow headed Charlie dog has moved on-and I am bereft.  I hope that there is a heaven for where they can eat dirty diapers and futons to their hearts content.

  I am going to miss my pup..He was a good dog.  

Charlie J Dog
May the wind always be at your back

Saturday, February 8, 2014

The very bumpy road to quiet...

~"Trouble..oh, trouble, trouble, trouble, trouble..Feels like every time I get back on my feet, she comes around and knock me down again.."~ Ray Lamontagne

 I think that this, in many ways has been our hardest year yet. Holy crap-it has just been one thing after another-and I am starting to feel a little bit
    pessimistic...loopy..out of my head...strained if you will.. It feels like we have been living under a ginormous cloud of doom and damnation. Really, there is no other apt description.  Times like this...well, honestly, there haven't been any other times like this...But, in difficult situations, I try and evaluate things..try and figure out what exactly the universe is screaming telling us.What can we change?  What can we do differently-or better? What can I find that is positive..I look hard for the positive..I do..really!

  Back in June, when Omar lost his job..we thought.."HOLY CRAP! OH NO! WTF ARE WE GOING TO DO?!  Gosh! Lets look at this as an opportunity!" We had known for a while that he had wanted to do something else..that change might be a good thing.  We had thought about it a lot.  But- thinking isn't doing.  His job had paid very well..and we were comfortable with that.  We reasoned that his job loss was the universe giving us the kick forward that we needed-making us change things. I mean really, there is nothing quite like losing your job, your benefits, and your stock options to make one reassess their situation!  ...So, change we did-or so we imagined...Omar, after careful deliberation, took a job offer. It was a step away from what he had been doing. It was the same line of work-only different..and we had thought-better. In some ways it has been. In others?  Lets just say it has been crazy nonsensical an *cough* adventure..oh what a time we have had! AND  here we are..*gulp* once again thinking "Something HAS to freaking change!

  I'm starting to think that maybe it's me.  Maybe I'm the one the universe is yelling at.  Maybe I'm the one who should be looking to change how I have been doing things..The problem is-what do I do?

  My dad, in loving moments-used to look at me and say "Kid? You have no skills." He was right!  I don't! Really and truly-I have absolutely no marketable skills. I have a degree in theater for goodness sake! While I do consider myself to have been quite good (it's been a few years since I've performed) I don't see a profitable future in monologues...or in dressing up as giant costumed characters-at least not in Maine. Some people have suggested that I write a book. Which is a lovely ego boost (I must admit)....and, I have had a few stories published-for actual money..But honestly? What in the world would I write an entire book about?  Autism? Ick-don't we already have enough of those? "A mother struggles (with great depth and emotion-none of which I have) to understand..a child-who, against all odds- succeeds..they walk off (lots of tears streaming down the mothers face) into the sunset" Blechhh... As for my life...sadly, it just isn't that interesting.  Don't get me wrong!  My life is quite wonderful..but-To write a book-you need to be have struggles and a dark history or a sordid past..disease helps.  Me?  I've got nothing...I can just imagine the title "Mediocre-a mothers quest to vacuum the living room"..or "Laundry-a mothers journey towards folding and putting away." You couldn't even make a Lifetime movie out of it...which is what happens to all books of that variety..Can you understand my predicament?  I'm just not all that interesting!

 So... I've been looking at other options. I don't want to go back to school..I'm going to be fifty this year, and am pretty much as "higher educated" as I am going to be. Besides, I just don't have the attention span to sit through classes..Although...I have received a couple of (unsolicited) offers for job training that have spurred my interest.  I must admit that I am kind of intrigued by the  "Train at home to be a funeral director" catalog.  Yes, there is a  part of me that wants to look into that.  How does one train at home? The pamphlet says that they supply textbooks(Somber 101?) and..learning aids...Learning aids? What could they possibly be? Can you mail a cadaver...or do you have to supply your own? More importantly, after finishing the course-can you work from home?

  We are finally finally finally at the beginning of the end of a very long, very cold, very stressful winter. I would really like it if things would calm down for a bit. Give us a moment to catch our breath..check in on my kids (who, really need so much more of my attention than I have been giving them)..maybe hang out with my chickens...drink some coffee...stare out the window. I would really enjoy a few weeks of unfettered life...A little peace, a lot of calm...and a whole bunch of quiet. Oh..peace and quiet..what a joy that would be! But how do I get that?....Hmmmm.... Maybe funeral directing wouldn't be such a bad choice after all..I might even be able to write a book about it."Kathleen Leopold-Funeral Director".or-"A woman and her corpse".."A mothers adventure in embalming?"..The possibilities are endless.....