Saturday, July 19, 2014

Swinging..

   
~"The outward man is the swinging door; the inner man is still the hinge."~Meister Eckhart



     
    

 So, Summer is going the way Summer usually goes...mostly lazy days with a summer rec program sandwiched in the middle. Now that the kids are older, it is easier to spend more alone time with each of them. The boys and I have taken to walking most nights-exploring the different areas in town. Part designated route and part adventure. We walk down to the river and then over to the playground taking mostly different routes in between. The playground is always our final destination before returning home. Our last stop- with the wonderful swings.  We save that for last because by the time we get there, it is dusk and we don't want anyone else to be there. I mean really-swings! Who wants to have to wait for a turn?  Besides it would look kind of weird if we had to stand around ( a 50 year old woman and her 2 very tall sons) waiting for a five year old to hurry and finish. We also like the quiet-ending our evenings in the air. The three of us in our own heads swinging at our own paces. I think that it helps us all sort out the day or anything else that might be rolling around in our brains.

  There is a lot going on for all of us right now.  Sam is at an age where he is just filled with longing. He is such a good kid.  So genuine and open-no angsty teen boy attitude. He doesn't grunt!  He actually talks to me! Real conversation!   He is so ready to leave home and start...living?  He feels like this town is too small and that there is no longer a place for him here. He wants to DO things-and he wants friends.  He just doesn't feel any special connection with any of his school "friends".  It isn't that he feels left out-but more like he can't find interest in the things they are interested in. He's chomping at the bit-and I'm trying to keep him steady...Trying to convince him that you spend more time being an adult than a teenager...that he WILL find his tribe..I'm hoping that with all the changes going on in our lives (running a restaurant) we can get him into some classes and activities away from school. Fingers crossed that this year will be better...

  Oscar is all about going to camp this Summer. In his own words he "Wants to make friends and have my own adventures!" Next to Lily-Oscar is my most social kid. Language and processing difficulties and all. He so wants to participate in things-but, his disabilities exclude him.They shouldn't-but they do. He's a smart kid-he knows so much more-SEES so much more than many people give him credit for. He has these moments of verbal clarity-of precise thinking that just floor me.He also has a deep sadness. He knows that he is different-and while he is confident in who he is-he feels left out-alone. The other day, he was going down a hallway ahead of me...he passed two young men-(perhaps two years older than him) he was walking the way that he walks...flapping his hands at his sides..intent on going where he needed to be...Right after he passed the guys..they turned to each other and smirked..a kind of "get a load of that character" kind of look..until they noticed me. Yeah-they didn't expect me there.. I just looked at them-said nothing..just stared. Causing an instant look of almost shame.. (as it should)..and I walked on. What I wanted to do-and did in fact do later (in my mind) was smack them in the head..tell them that they were dumb-asses..tell them that my Oscar-my son- had more dignity-more character-more humanity-more confidence alone- than the two of them could ever hope to have combined. So, while I quietly agonize over these slights..agonize over his future and the world he will one day be an adult in...he remains persistent, confident and sure in himself.. He walks tall. I really hope that his week at camp is everything that he wishes it to be and then some.

 As for me-I swing with my worries-and I worry about everything..my boys,my girls..Omar..will our house ever be done?..My chickens and sadly...my strapless bra. Have you ever tried to wear one of these things? Holy crap! I wear a lot of tank tops-some with "Y" backs-and I loathe the whole let your bra straps hang out look.. I figured I would try one of these strapless numbers. I don't know if I'm inept?  Somehow wearing it wrong...I put it on and it fits correctly-as long as I stay home.Really-I can do anything in it.  Kind of like the "Hair club for men" commercial (only with a bra instead of hair)..I can run..jump-swim even!..you name it-and it stays in place.  But the minute I have to go anywhere-especially if there are people-slippage ensues..I don't know why it happens!  I get out of the car-everything is where it belongs- and then I start walking (usually towards a group of people) and ever so slowly it starts sliding down my rib cage..at the same time turning around. Now, I am not complaining mind you-but, I am not what you would call "full figured"..in fact, I'm quite a bit less than full...so, my upper undergarments are slightly endowed...o.k.-they are padded! So...when this strapless band of preformed breasts slips and turns...I either look like my head is on backwards OR that I have started growing breasts on my lower back. It's downright unsettling! The only thing I could think of to do (besides duct tape) is to walk with my upper arms pressed firmly to my sides-while my lower arms swing up and down. My upper arms slow down the sliding and the movement  of my lower arms push it up in place. It also helps if I sashay my hips-it helps with the upward pushing momentum. This would all be fine and good if I didn't look like a woman whose laxative had just kicked in. It's even worse if I am just standing and chatting with someone and only one side slides down!  Then I oh so casually(so the other person doesn't notice) have to do an almost side bend while trying to (again casually) thrust one shoulder repeatedly in an attempt to get "things" back in proper position.  It's like playing with one of those party favors.  You know the plastic disc with the silver balls that you have to maneuver into the tiny holes. It's a delicate operation!. Oh such worries.

  As you can probably tell-these nightly walks with my boys are necessary for all of our mental well beings. I am finding great solace in my swinging..This summer, it seems to be all that I need...as long as I'm wearing the proper support.     

  

Saturday, July 5, 2014

No apology..


~"“Re-examine all you have been told. Dismiss what insults your soul.” ~ Walt Whitman




           
 I like to think of myself as a regular parent. Doubtless there will be some who say "Kathleen? What does that mean?! What is this regular that you speak of?"   Well, I am more than happy to explain!  "Regular"- simply means that I, like so many millions before and after me-have taken on the responsibility of growing small people into big people-with people being the operative word. It is what I do.  Sometimes I am very good at it-sometimes I fail miserably. My kids aren't complaining (too much)-So, I'll take the former as an affirmative. The thing of it is-parenting is a tough job. I don't think anyone really knows just how tough until they become a parent themselves. I mean, you can talk about parenting, comment on other peoples parenting-even imagine what kind of parent you will be...but really?  You don't know till you get there.  That's o.k.-because, there is plenty of "on the job" training.

  What really annoys me is when people refer to me as a "special needs" parent. I really don't like that title-and I really don't care for the word "special" in this sense. ( I wrote about this here (way back in 2009))  I'm really not sure what to make of it.  There are posts upon posts about what it is supposedly like to be a "special needs" parent..you know the kind that tell people how "we" (those of us doing all this special kind of parenting) need all kinds of understanding and crap like that because of this, that and the other thing.  But most importantly, how we will do anything for our kids because WE LOVE THEM-*sigh* and THAT is the part that really bothers me. Hey, I get that maybe some friends or family might not know how your time is spent-that they might even need some help in understanding that you have a lot on your plate. What I don't get is having to justify what you do because you love your kid. To me, it reads like an apology. Both for your actions and your kids disability. "Sorry I can't go out with you tonight, my kid has O.T.-but I don't mind!.. because I love them."   I don't need to explain that I love my kids or that I would do anything to help them.  Shouldn't that be a given?  *sigh*  Why isn't  there ever anything good in these posts like-"give these parents candy"..or"-pay for a nanny so they can take a vacation"?  I mean thanks for the understanding, but what I would really prefer is fat and sugar laden chocolate rich carbohydrates and maybe 24 hours alone with my husband without anyone knocking on the door asking us "what are you doing in there?"  Any day.

After almost sixteen years of parenting, thirteen of those years spent navigating spec. ed in two  different states..four kids with very different needs and neurologies..reading numerous different blogs and talking with many different parents..I have come to this conclusion...Parents with kids that have disabilities apologize an awful lot. Not because they have anything to be sorry for-but because (and this becomes ingrained) asking for anything for our kids sometimes becomes such a production number..that you wind up feeling thankful for any crumbs that you do get..No, we don't apologize for our kids-(never!) But it is as if sometimes we have to apologize for their needs...

"Thanks so much for the 7 1/2 minutes of o.t. that your "assistant is giving my son every other week-I do know that your schedule is full(and that the school is stretching the law very thin by hiring you to oversee your "assistant"-but that you are hardly ever present) and I really appreciate your squeezing him in!"

We also spend an awful lot of time justifying what we need for our kids..

"Yes I know that my girl is very quiet and well behaved and not a problem..and I understand that unless someone is really watching her, they aren't going to see that she is a hair away from a panic attack, and that the teachers have soooooo much on their plates that they don't have the time to look out for a child that "appears" to be o.k-especially as there are kids whose needs are very evident......but all the same-she does have an actual diagnosis and really needs someone looking out for her!"

 I'm tired of it. Tired of wasting time fighting for things that should be givens- services that are required by law.So..in lieu of writing a yet another "special parent" post..I'm just going to make a statement. It is my belief-my statement. I speak for no one but me-from my own experience.

Here goes-
 As parent-like any other parent-my kids needs come first. I will do whatever needs doing to ensure that they grow into responsible, critical thinking, decent and kind independent (to the best of their ability) adults.This has nothing to do with disability and everything to do with it being my job as a parent. My methods may be different-but, it is all (like any other parent) for the same result. 

My kids do not need to justify their needs or existence to anyone.  EVER. They are human beings-and, like any other human being- deserve to be treated with dignity and respect.  Nor do I need to justify, apologize or make any excuses for the time that I spend working with them. I am their parent-again, that is my job.

My kids are my greatest joy. I am not sad, bereft or disheartened because of autism. Do I wish things were easier for them? Yes. What parent wouldn't?  Parenting kids with disabilities can be rough. I would never say it wasn't. The world is not particularly kind to those with disabilities-otherwise they wouldn't be called disabilities.  However-I don't want sympathy-nor a super hero cape. These are the kids I have always known-this is the parenting I have always done.  I don't know how to do it any differently. 

I could probably go on and on...but this post is already getting too long. What can I say? I'm home with four kids and I am finding it very difficult to concentrate, I guess-in a nutshell-I'm trying to say that we are all in this together. Parenting is hard. Everyone has their own definition of what hard is-and to some, the grass is always greener...or browner from their perspective. I'm not in a contest-I just want the world to be a good place for my kids. ..and candy. 

Saturday, June 21, 2014

One year...and today..


~ "let me be something every minute of every hour of my life. Let me be gay; let me be sad. Let me be cold; let me be warm. Let me be hungry...have too much to eat. Let me be ragged or well dressed. Let me be sincere - be deceitful. Let me be truthful; let me be a liar. Let me be honorable and let me sin. Only let me be something every blessed minute. And when I sleep, let me dream all the time so that not one little piece of living is ever lost.”`Betty Smith~A Tree Grows in Brooklyn








 Summer vacation is not like it used to be..or at least not like I remember it.  When it seemed like there was an endless stretch of days- possibility ahead of me...First thing in the morning I would be out the door riding my bike..running in the woods..an eternity spent outside outside playing "red light green light" or "ring and run"  until the street lights came on- which everyone knows is  the universal signal that it was time to go home. It was a rare day that was spent inside-as most of us had mothers admonishing us to  "GO OUTSIDE AND PLAY!!" The days were warm, but I don't remember being bothered by it-except maybe at night..when all we had were window fans blowing in hot air. So much has changed since then. At least for me. Summer still means endless days..only they aren't as carefree as they used to be

  I suppose that some of it has to do with being an adult-and some with how the times have changed.  Now days, kids have play dates and organized activities..Wii, Nintendo, and more television stations than I can count. When I was growing up we had four television stations (Omar had one) ..and they rarely-if ever, played kids shows. So-we had no choice but to learn how entertain ourselves. My problem now- has been in teaching my kids how to entertain themselves. Especially with all the fun technology and gadgets...which- in the early years- I embraced with wide open arms. It saved my life-and that is in all seriousness.

  Yes, there were many days that I had shamelessly allowed my children to sit in front of the television-or the computer screen...sometimes for hours. I admit it.  For years the background soundtrack of my life/ house were the theme songs from every obnoxious childrens program my kids were obsessed with. The thing is-the kids-especially the boys  gained a lot of knowledge from these shows..I remember when Sam was the only one in third grade to know what "haggis" was-thanks Scooby Doo! They learned about the world in a way that wasn't overwhelming. It calmed them down-made sense of things. So, I don't regret it. Even if their theme songs have become etched in my brain... So much so-that, to this day, I can still remember every single word to every single Thomas the Tank Engine song-and most of the dialogue from every single episode...Oh how I wish that there were a quiz show based on that.."I'll take Thomas's cheeky friends for 1000 Alex." I would be financially set for life! 

  Every summer, since the kids have started school...I make these plans...schemes if you will.."This summer we are going to do science projects, and visit the library..and spend our time out doors!" *sigh*...and then August rolls around and I'm buying school supplies and I realize we have done none of it...and that the reality is that I spent the majority of my time delegating whose turn it was to use the computer..or pick the t.v. show. But-this summer...this summer it's going to be different. I swear.

  A year ago yesterday-Omar, along with many of the other well paid employees of his company, lost his job. It set us in a tail spin.  But, sometimes spinning is good. This was definitely a year of spins. We reevaluated, refocused..and basically figured out that life wasn't about work..that we wanted to do things..have adventures..LIVE our lives-be the examples that we wanted our kids to see. At the same time, our kids each spun through their own things as well...no one however, as much as Oscar. 

  I don't know what happened..or even why things happened..But last summer, you would have had to PRY Oscar away from the computer..insist he do something that wasn't electronic..He wasn't interested in anything other than what he knew. But then- a few months ago-things started changing...it was gradual at first.  He started asking to walk to town.."I'm thirteen" was his reason....and then he brought home a brochure for summer sleep away camp..AND looked up the web site-AND had me fill out an application..."I'm thirteen" he told me.."I'm old enough to do this"..and then he started walking away from the computer.."I need to get out of my head" he's told me...and then he went to the school dance-alone.."I want to" he said...Today-he(and Sam) started working at our restaurant (bought as a result of this year)..They swept and stocked,,cleaned and folded pizza boxes..measured pasta and made lasagna- on their own. Today-we started them on the road to real independence-and they loved it.

 Every single moment of chaos and uncertainty- that started a year ago yesterday, was totally worth it for today..Today really was priceless. 

  Our Summer break started this past Wednesday.  We have already gone to the library..Zoe has read two books and has planned our first science project.(she really wants to be home schooled)  we are building a volcano on Sunday.All of them have spent at least an hour each day reading. I have only heard "I'm bored" 540 times (roughly-and 536 of them were from Lily) and the only back ground noise has been from the kids playing in the pool.  Not bad so far...

Saturday, June 7, 2014

Seven days, one girl..and a whole lot of dancing...

~"Her blood pressure is so high there is snow on it"~Dorothy Parker

        




       
 We are so very close to the end of the school year, and I am so looking forward to it. Kind of .  Although, I do look forward to NOT having to pack lunch boxes, back packs, help with homework or dragging my littlest (many times kicking and crying) out of bed every morning.*sigh* As of today, she has taken twenty personal days off from school this year-those were the mornings that I just didn't have enough fight in me..didn't have the energy I mustered the other one hundred and sixty days to push get her out the door. My youngest does NOT want to go back to school next year...hell, she has already informed me that she isn't going to go to school on Monday...or Tuesday either. I haven't heard any pronouncements on the remaining days...but I am trying to keep my hopes up.Fingers (and everything else that I have two of) crossed!

 "Lets just finish out the school year!" I say to Zoe with a big enthusiastic smile on my face..

She just stares at me.

"It's only seven more days! seven! Pfft- that's nothing!! Right?!" I say with an even bigger grin..

She blinks..just staring at me...no expression, no emotion..nothing.

"Just THINK of all the FUN that you will have! Yay!...hahaha!!..?"  I could not be any more enthusiastic..so damn enthusiastic..so peppy and positive that I'm beginning to look a tad bit crazed..perhaps even slightly deranged..

She continues to stare..maybe I'm imagining it...but do I see...pity?! Disdain?!

Oh, no...that is so not going to fly..not with me. No way-no how. Time to bring out the big guns-The game is on!  I start to chant.. "Zoe-Zoe-Zoe!" ..I even add a dance step..or thirty. "Whose gonna go to school?!!...(No response) "I can't hear you!" (still nothing)..So..I decide to answer for her.."Who is gonna go to school?" "ZOE!".."Who can do it?" "Zoe can!".. "If she can't do it no one can!" "Zoe!"  I'm marching around..shimmying-shaking...waving my arms in the air..I'm having a grand old time! (it does not take much to amuse me) I'm so caught up in the moment...so happy doing  my "going to school" musical routine with accompanying dance numbers...that I did not notice until I turned to take her hand, that I was the only one in the room...with the exception of the dog, who is just staring at me.

 For a moment, I just stood there..."Is this what early dementia looks like?" I thought. If I am like this now-what is going to happen to my mind after the kids leave home? Will I be staging massive one woman musical productions..singing and dancing my way around the house with only the company of my dog...and perhaps a chicken or two? But then I remember-this is something that I have always done.  From the time my kids were born-I have always used some kind of silly song and dance routine to persuade them to do things..such classic songs as "Thomas the train doesn't want to be flushed", "Wearing clothes to the store is important" and my personal favorite "Bosoms in a box for Christmas"..For the most part, they accomplished what words alone couldn't.  For instance, we haven't had to replace a toilet in years (knock on porcelain), all the kids come grocery shopping fully dressed..and puberty (as weird and hard as it is) is nothing to worry about. These little made up songs have always done the trick-until now.

There are only seven days left in the school year. I don't know that I will be able to come up with any song or dance catchy enough to convince Zoe that she really ought to go. I'm wondering if maybe that's my answer.  Maybe home schooling will be the right thing for her.  I guess I will just have to come up with a song that persuades me to do it. Or-maybe we just need different songs to persuade her?  Either way, I have the whole summer to work on it.  Perhaps I'll stage a whole musical! I'll even include the chickens.

                                         
Helen and Dorothy


Saturday, May 31, 2014

His eyes..My worries..

~"If only I could change the world around me,
 perhaps my truth won't one day become the end of me"~
 Dan Pearce~Single Dad Laughing





   
 We have raised all of our kids to love themselves-as we love them.  Just as they are-truly and unconditionally..."You are wonderful!"-We tell them-probably too much..and yet sometimes it doesn't feel like it is ever enough. This love that we have for them..it is just so.. I don't know of any word that can describe it..it just is.  It's a fire, it burns..sometimes it just hurts.

  "Have a good time" I said as Oscar got out of the car. "O.K."...I watched him make his way towards the school...talking to himself..arms waving, his fingers wiggling in front of his eyes. I stopped from calling him back..I watched him stim away and I stopped myself. Chanting the mantra of the moment  "just breathe...he will be o.k...just breathe.."

  Oscar stims because he does. I used to ask him "why?"..and the answers were varied and sometimes interesting...or funny. Now though, with the rare occasion of checking in..of making sure all is o.k...I let him be. He is older -an almost young man, and I have to accept..to respect that his reasons are his own. But sometimes...seeing him and seeing him in the world as it is- makes my stomach bottom out..

  I was ten different kinds of worried driving him to the dance tonight. Yes, I knew it was his choice to go..He wanted to.  And he has gone to dances before-but, he has always had his brother by his side. It never bothered me(too much) because I figured that they would look out for each other. But, this year, Sam is in high school..which leaves Oscar in the middle school..alone. This evening, for the first time EVER-I left him..to fend for himself-by himself...and I was a bit of a mess over it. Oscar however, was fine.

  I left him-not because I wanted to (hell no!) but because he asked me to. He walked in stimming and eeeing..because that is (in part) who he is. Sometimes, I forget the plain beauty of that. That this almost young man, who is so very different from the people around him, is also- so very comfortable in being who he is. I get so wrapped up in worrying about how the world views him, that I forget to acknowledge how he views himself. I forget to look at him through his eyes. Although, even when I do remember my forgetfulness...I still worry... Does being a mother ever get easier?!!?

  
 Yes, I know-I really didn't have to worry. But I did-because in my universe-if I don't worry..and fret...and get anxious..if I instead, get all confident and cocky-thinking that all is going to be just super...everything invariably plummets downhill into a whole heap of awful things and unfortunate outcomes.  That is just the way it works. So..I see my worry as a kind of duty-a service even. Perhaps one day I will be thanked for it-or tranquilized. Either way works for me.

  So...about an hour after the dance started...Oscar called-he wanted to be picked up. He'd had enough. "Did you have a good time?" "Yes.".."What did you do? "I ate cookies." "Did you say hi to anyone?" "Yes, I said hi." "Then what did you do?" "I called you to come home." "O.K." "Hey Mama.." "Yes?"
"Those cookies at the dance....they don't count as dessert." .."huh." "The cookies at the dance were NOT dessert." .."?" .."I STILL get to have my dessert...right?"... "Oh!..yes...go ahead...No worries."..right.   *sigh*
                   

  





Saturday, May 24, 2014

Uprising..

~"[Atticus] would be there all night, and he would be there when Jem waked up in the morning."~ Harper Lee from To Kill a Mockingbird 




Omar spending time with his girls
I wanted to make sure to write a post about fathers a few weeks ago-seeing as it was fathers day..and then my laptop broke down..and the kids started Summer vacation(and they don't share their computer very well)..and all kinds of things came up and I never seemed to be able to just sit down and think-much less write.  So-this post has been a long time coming..

AND IT NEVER HAPPENED!  

I started this post almost a year ago.  My Intention was to write something about Omar..about the man that he is, the father he is..and basically what an all around good kind of guy that he is. But then..two days after I took that picture-all kinds of interesting adventures began..mishaps and mayhem took place Involving different kinds of crazy ideas and adventures..steps forward and backwards..silly little dances with even sillier small people..and we had the kids to take care of too!   It has been eventful and tumultuous..topsy-turvy and ridiculous..So..today..instead of writing about what an absolutely wonderful father..husband and sexy hunk of man Omar is..I'm going to write about a major decision we have come to..a choice we are making..an action plan per say..After this incredibly silly year of some highs and many lows..These forty plus weeks of mind boggling weirdness with a cast of characters whose "characters" would astound even the stoutest of hearts..(Unfortunately, we have had to be tight lipped, tongue tied, closemouthed and restrained)  We are tried and tired. Therefore, we have come to a decision..




 Drum roll please......

That


WE DON'T GIVE A CRAP ANYMORE! 

Yup!  We are telling it like it is..throwing down the gauntlet, taking no prisoners..We are unequivocally unpretended- straightforward, unbiased and plain, right up front, talking turkey. We are done, through, finished..mad as hell and we aren't gonna take it anymore..We have been put down, set down, knocked down and insulted.  Ripped up, run down, torn apart and gutted.  

That ends now. 


We have made a set of rules, of regulations, guidelines-a decree. A chapter and verse, by the book, criterion- a maxim, a model-an ordinance..a formula, a basis A PRECEDENT!

If you can not conduct yourself with seemliness,decency,decorum-civility,and/or convention.. can't mind your p's and q's, suavities or social graces..and choose instead to cast down, shoot down,take down, put down, demoralize and debase..

The kindly please..

Pipe down, dry up, fall silent, dummy up..button your lip, cut the chatter...zip it, plug it put a sock in it..ENOUGH ALREADY!...because, if you don't have anything good to say....

We just aren't that interested.

Because

We are too busy prevailing, persisting,subsisting and existing. We have so much joy, jocundity,exuberance and hopefulness- all kinds of grandiloquence!..That we can not be bothered with anyone's enmity, indignity,spitefulness and despitefulness..and all the other many kinds of "itefulnesses" that have just spun our world these past many months. We are done..we have taken our power back..cast the nastiness aside...and it feels good. Oh, and Omar is still the best of fathers, husbands..and an all around good guy..We are blessed to have him by our side. How wonderful is that?


Dorothy says-"cluck off"


  

Saturday, May 17, 2014

Downswing...


~"Chaos is a friend of mine"~ Bob Dylan





  It has been quite a year for us. A hell of a year..a super crazy holy crap which way are we going- kind of year...and I'm getting  tired of it. Tired of the uncertainty, tired of some of the most bizarre behavior I have ever seen from (supposed) adults. There have been days where Omar and I have looked at each other and thought "Are these people on drugs? Like heavy duty psychedelic drugs?" It really has been that weird.  This has had nothing to do with the kids-although we have had some adventurous times in that area as well.

Don't get me wrong!  We have had some very good things this year as well. I can't ignore that.
The universe seems to be testing us at the moment-and I can't say that I care for it. Nope-not one bit. So, instead of writing a blog this weekend-I posted this picture instead. It is my reminder of what beauty there is in the world. It is our (Omar and myself) reminder of what we are working for. This picture is both my joy and my truth.  I need to remember this-always. Especially when crazy comes calling..

Anyway, the next few weeks might be a tad bit...stressed. So I might be posting more pictures than words. Although one day(hopefully soon) when the dust settles (and I know I won't be sued) I will write all about this time. It has been one hell of an adventure. It's going to make one hell of a story. I am soooo looking forward to writing it. Gleeful even.