Saturday, April 26, 2014

Weights and measures...and maybe a little rebellion from me.

~"Form follows function-that has been misunderstood.  Form and function should be one, joined in a spiritual union."~Frank Lloyd Wright

This past week was Spring break..ten full days of staying up late, sleeping in...a time where we went at our own pace, did things in our own way-our own time.  There were absolutely  no expectations.  it has been lovely-especially because they are all old enough now to get their own breakfast-find their own shoes!  Entertain themselves! And with the minor exception of the daily brawl between our girls, it has been wonderful. We have all had time to relax and unwind-and although they aren't looking forward to it, the kids are ready to go back to school on Monday. Well, all of them except for one of my girls.  She has already declared that Monday will be a "personal" day for her.  *sigh*  My girl has become queen of taking "personal" days this year.  I really don't know what to do.  Sure, I can be tough-insist that she go...even take her in myself (instead of the bus)..I have done that. Dragged my tear stained girl to school-only to be told later.."She was fine!" And there lies the problem..

  My girl has some issues-the biggest being that she appears to really not have any. Yes, her anxiety is recognizable..However, she is a model student..quiet, sweet-meek. She follows the rules, does everything expected of her, no more, no less.  She is exact. At home, it is a different story.  She can be loud-boisterous-her humor rivals Oscar's.  But there is a down side as well. At home she can be mean-sometimes even cruel...mostly towards her sister, but we have all been at the end of her very sharp tongue. After which she breaks down-totally and completely. Crying, berating herself...and sometimes even slapping herself in the face.

  At school, she holds herself so tightly together.  She WILL NOT make a mistake, take a misstep, stand out.  She holds herself so bound up, that, by the time she gets home, she is exhausted. Worn out-wrung. Sometimes she screams, sometimes she cries, sometimes she puts a blanket over her head and crawls on to my lap just needing to be held..and sometimes she just goes to sleep. She has told us that "school is too loud" or "voices sound like scribbles" that she "doesn't like the sound of her own voice" and at the worst of times she has cried out "I am just a weird freak!" .."Oh baby girl-why do you say that?" .."I don't know!"...because she doesn't-and neither do we.

  It is not an easy thing for me to ask for help-especially when it comes to my girl. We have been down this road so many times since diagnosis.  But, that is a whole other blog post.. The thing is-sometimes I feel(when it comes to her) as though I'm seen as some sort of Munchhausen Autism by proxy mother. Academically my girl is fine-great even...socially, she what's the problem?  If she were like her brothers-who, are more "noticeably" different-I'd have no issue getting help. But she isn't.  Her behavior issues are at home-so it must be a home problem-right?  Even though she begs to stay here-begs to be home schooled.  Which frankly I'm not sure if I am up to the task of doing (I'm afraid we'll just sit on the couch all day eating candy and watching "Ellen") or if being home all the time is even good for her. It is school that she doesn't want to go to.  So I ask for help. 

  It has been suggested that we start her in some kind of therapy. Fine.  If this person can help her sort things out, help her to navigate what is so difficult for her...I'm game. We will do anything for our girl!...almost. On Wednesday, the therapist called. He was eager to start working with our girl..we just needed to fill out the paperwork, discuss what we would like to see happening for know, the usual stuff..until he suggested (in order to get a jump start on things) he come to the house to do this. My first thought was "crap-I'll have to vacuum." It has been a long time since we have had home visits from any kind of therapist. (it used to be that I had a house cleaning schedule based solely on therapy visits-it kept my house clean for years!) My second thought was..."*Sigh*-he just wants to see what our home environment is." Are we crackheads? Abusive? Is the house a mess?Do they still have Halloween decorations up? (no, no, ummm we're renovating!..sigh..yes)  Which pisses me off.
But hey-I could be wrong...We weren't able to meet with him (at the time he had available), so we settled on meeting at school. But then...I got a voice mail from him saying that he had another open slot! Could he come to the house?  We ignored it. It is spring break.   I vacuum for no one. 

As a mother,you wear a lot of different hats. Cook, chauffeur, general fixer of all things.  I am the person that is supposed to make things good and right and above all else-safe. They trust me.  Trust me to tell them what is right and wrong, trust me to help them navigate this very confusing world, trust me when I tell them to do something because it will help them. I'm a firm believer in letting them make their own mistakes-in falling and letting them get up on their own.    But right now, I feel as though I am failing my girl. She is falling- and this time, I have to catch her.  Have to try and make her world better and safe..I have to build her self reassure her, let her know that she is magnificent just the way that she is..  Have to-even if it means dealing with home visits or donning a "teacher" hat. Either way, the house will be I would definitely include vacuuming as part of her school curriculum.   


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.