Saturday, January 17, 2015

Long strange trip..


~"Sometimes the lights all shining on me,other times I can barely see..."~Jerry Garcia






"Yes, I will..errrr *cough, SHE will be starting at a new school next week.."  That was me thirty five years ago..speaking to the superintendents office...pretending to be my mother..because I had absolutely no intention of ever going back to school..legally I could not drop out until I was sixteen...and since that was only a few months away...I thought that I could stall things. put them off until it was too late for them to do anything..My current school..well..we had come to an understanding..a mutual agreement of sorts...a meeting of the minds if you will...we just couldn't see eye to eye..they thought it best that we part ways..We were breaking up.  "It's not you-it's me.." Right...I was kicked out..expelled-I would not pass go-would not collect two hundred dollars..The fat lady had sung-I was done.

  I wasn't a bad kid!  I didn't fight, or wreak any sort of havoc..I just didn't always make the best of choices-one of them being- actually showing up to school. For one reason or another-I can't really remember...I just stopped going. To this day-I do not know how I got away with it for so long. I'd get up, get dressed...walk to school...but somehow..I never quite made it in to the building. I intended to go in...I would get there, books in hand..bright eyed and ready to be educated...and then- someone would call out to me..and before I knew it..I'd be sitting in a friends basement..or on the way to the beach..or Burger King..*sigh* My intentions were....good-ish...Oh that damn road to hell....

 So, there I was, pretending to be my mother..."Yes, I will send you the information so that we can have her transcripts sent.."  I used my best "Mom" voice...and it worked. They bought it...or, they just didn't bother to look into it. Either way, I successfully became a high school drop out at fifteen.  Go me! not. Although in hind-site, it was probably one of the best of the worst decisions that I have ever made..or the worst of the best?..Either way, it did help me to figure some things out..even though that figuring out took about ten years, Sometimes *sigh* I'm a slow learner..

  One thing that I have always thought was that if I had kids-it would be different for them. They don't know too much about my early years because....honestly? I never want to hear "Well-YOU did it!"  I honestly dread that. Besides, they have to make their own mistakes-not live vicariously through mine.  They are doing a good job of it.  

  Thirty five years ago, I would never have imagined myself sitting in a principals office-as a parent! Yet, there I was this past Monday...along with Omar, the principal, the assistant principal and one very very remorseful child. Talk about surreal! I hardly knew what to do with myself.I admit, I was a bit tense-I thought that I was going to have to fight-but not in the way you may think. 

  All of my kids have I.E.P.'s. If we believe that they require a support or a service, I will not give up until they get it. I am a dog with a bone. No apologies. But I also believe that although my children (via I.E.P'sand otherwise) have specific rights-they also have responsibilities. Yes, my kids all have disabilities-and sometimes those disabilities affect their behavior.  But in this case-my child made a mistake-a mistake they were capable of not making-and they needed to deal with the consequences. I was afraid that the opposite would happen.  It didn't.

 I am probably one of a group of very few parents who rejoice in their child being suspended for two days. I rejoice because he was treated as a capable human being, because they were given the opportunity to discuss what happened-in their way and in their time, that they were listened to and not rushed, spoken to and not at, understood and not vilified, given support in the moment and in the future. My child walked out of that office feeling better than when they walked in. That is a gift. Not one that I particularly wish to ever be bestowed on them again-but a gift nonetheless...

I did eventually graduate from high school. (I had to make up a full year and then some-yuck) I even managed to go on to college and get my degree. My mother never found out that I impersonated her.  That's probably for the best. 

Saturday, January 10, 2015

Reap...

~"You can learn many things from children. How much patience you have, for instance."~
 Franklin P. Jones


       


         
     So, our holiday break came to an end..We had a lovely Christmas and New Years day.  Right now, we are finishing up our first week back to regular life.. 

  Five years ago, I would have been cheering the start of school..counting the minutes (really-I did count them) until the kids got on the bus and left me and my coffee blessedly alone. I loved having them home-but sometimes too much of a good thing is...too much.   Now, although I am enjoying  once again having a few minutes to myself -it is with a different sort of feeling..more bittersweet and less hysterical joy. They are all older now-and life isn't so cut and dried. Instead of wrangling a herd of little ones..I am helping four very diverse and strong minded individuals learn to navigate their lives...which is a mature way of saying "Holy crap I have teenagers and a tweenager and a little one who believes she is an adult!" ...and they ALL need me all at once..and I'm trying to juggle everything which feels like trying to put socks on cats. I will be honest in saying that I have absolutely no idea of what I'm doing.
The logical portion of my brain tells me that they are all doing what they are supposed to..I get that.  But the highly caffeinated emotional and larger part of my brain shakes its fists (figuratively-my brain doesn't have fists) in the air lamenting "Why? Why?!" 

 My oldest is sixteen now..and he is trying to figure out his place in the world..It has been tough watching him stumble-letting him fail..but equally, it has been beautiful to watch as he gets right back on his feet. It's hard...he's not a kid...and he's not quite an adult.  He is definitely not my peer! He struggles with that last part-as do I-but for different reasons...He has a great sense of humor-however...some of that humor should never be shared with your parents! "Hey Mama...have you heard the one about the MASTER fisherman and his BAIT?" "NO! and I don't want to!".."But Mama..it's funny!  you see there was..." EEK!(plugging my ears) LA LA LA LA LA! Make it stop!  

  Then we have my thirteen year old..who cares only about what HE cares about and everything else is stupid...*sigh* It is like he is on auto-pilot or something..."Hey!  Do you want to watch this movie with me?" "No, it's stupid." "Please clean your room." "That's stupid." "Please eat your carrots..""They're stupid.".."Is dessert stupid".."Yes..NO!".."That's what I thought."   Sometimes, I wonder if the disdain he seems to hold for...many things has to do with his awareness of how some people see him. He stims-he has trouble with verbal communication..often times he is dismissed. No, I don't believe that it is malicious..or even consciously intentional..but, It is as if his disability somehow lessens other peoples expectations of him-of his ability-of his person-hood.. excluding him. Yes, he is very different-yes, he doesn't "do" things the way most people do..but...*sigh*. If only I could change the world..presuming competence would be the norm.

My girls have been a whole other sort of angst fest...My oldest at eleven is trying to figure out all sorts of girl stuff..social stuff..It isn't easy.  a lot of her classmates are a year or more older than her-and at this age, a year is huge. I simply do not know how to help her. I'm just not good at this sort of thing. It isn't by accident that I live in an area where fleece is considered business wear..I mean some of my closest friends are chickens!  What do I know about girl things? .Although I suppose we could ask my youngest..When she isn't imitating her sister..she's telling her what to do..and how to do it. (this does go both ways between my girls) When my girls get along (which is most of the time) it is wonderful...but when they don't? It's misery...for everyone.  The yelling and slamming of doors-the gnashing of teeth!  Sometimes it is just...excessive..overwhelming..headache inducing?  Separate, they are so lovely and kind..Together? They are a force to be reckoned with-both good and bad..It is tiring. I can not tell you just how much I am looking forward to their adulthood..that is, of course- if I survive their adolescence. 

 I was on Facebook this morning where one of my friends had posted the status "You reap what you sow"..I find this sentiment rolling around in my head as I write this post. My kids are my everything and then some. They are the reason I get up in the morning..and sometimes...alright, a lot of the time- the reason that I can't sleep at night. It's just plain hard watching them grow up. But, I look at how far they have come-and how much they have grown and I think "so far- sown good".I know-bad pun. I bet you that my chicken friends would like it..

Saturday, December 20, 2014

The beautiful of all that is...

~"I hate writing, I love having written"~Dorothy Parker






The herd when this blog started..






               Once upon a time...about thirteen years ago, (maybe it was twelve-time makes things blurry)  we learned that our Sam was autistic..a few years after that, Oscar...and..well, you know the rest..it has been sort of like domino's..only not in order..
 

Shortly before I was tethered, bound?  totally immersed..or whatever you call it-heart and soul to these four amazing beings..I was pretty carefree..We were pretty carefree.  Sure, we had our worries here and there..but nothing like the worry that you have once kids enter the picture...Not at all.  It's as if once you have a kid -BOOM-worry has kicked open a door to your brain..and takes up permanent residency..without paying rent. 

Growing up, I didn't dream of a wedding day or motherhood..it isn't that I couldn't imagine the possibility..I just didn't think about those things.. I had bigger fish to fry..adventures to have. I admit, I was kind of surprised by Omar...didn't believe in love at first sight..or actually in my case-lust.  But there you go. We met..and it just..was-WE just were..I don't know if that makes sense...Even then-I didn't give much thought to having kids..we were together for seven years before Sam was born...and now, here we are with four..go figure.

I really didn't have many expectations when I was first pregnant..although I did have many rude awakenings after giving birth.  Oh so many...my life was no longer my own-and that took some getting used to..actually, a lot of getting used to. But the thing of it is..well, I didn't "expect" anything from my kids..other than they just be. I figured that you gave birth to these little humans and they would eventually grow into big humans..That my job was to grow and love and nurture these beings into adulthood where they would go forth and..well..do whatever it was that they wanted to do, The adventure was in getting them there..the rest would be up to them..

I am not going to lie and say that autism didn't shake things up-it did-it does. Some things things aren't as clear cut as I imagined they would be...but then again-what is? We roll with them...and continue to roll...most of the time even merrily..but lately? We are rolling in so many directions it's hard to keep up..It isn't bad..it's just ..confusing..

 I started this blog a little over six years ago,,,the kids were little..I could keep them together..herd them. We had our challenges..but mostly, I spent my days looking for shoes..
because someone was either always losing one (always one) OR someone refused to wear them...so they stuffed them somewhere I couldn't find them...and then, they forgot where they hid them...and hilarity ensued...not. 

 They have bigger dreams now..they have wants..they long for the things I can't give them.  Sam (who started out on this blog as "Sammy") can not wait to leave home..can't wait for whats next...so much so that he isn't paying too much attention to whats now. It's hard watching him struggle..watching him fall...hard to LET him fail. I have to..have to let him make mistakes..fall behind in classes..watch him scramble to catch up. We found an art class for him on the weekends which he adores. I love (when I come to pick him up) listening outside the door..hearing him joking around with his classmates.  He has found his tribe, So, while it is hard to watch him stumble..he is finding his feet...

  Oscar..my funny boy young man-has become so introspective.He still jokes around..still likes to make us laugh..It is just more thoughtful and not so random... He had an anxious moment the other morning..I don't know what set him off...but, as I knelt down in front of him..I reached up as I always have- to stroke his hair and I couldn't.. my arms were too short...I couldn't get to him...and I'm not so sure that he wanted me to. I was lost..and at a loss.. The moment passed..he soothed himself..as he walked passed me he took my hand and squeezed it..saying nothing and everything..

 My girls..my girls are struggling-one way more than the other..Funny, my boys had so many difficulties when they were younger..my girls seem to be erupting with age. Girls on the spectrum are more complicated..I think,,,or at least mine are. Girls present differently..getting professionals to understand that isn't always easy.  Most studies center on boys. That has to change..We are so fortunate to have some very good people supporting them.  

They are lovely works in progress-these girls of mine..not yet young women...but not such little girls either. They are at tough ages...I know because I was once that age-and I'm really really glad that I am long past it. I often hear people reminisce about their youth..and how they wish that they could go back,,,and I think that they are crazy..Really just nuts..out of their heads...senile?  You couldn't pay me to go back..well..it depends on how much money you offered..it would have to be an astronomical amount..but then..if I had all that money..I wouldn't have this . hectic sometimes complicated..mostly joyful..beautiful wonderful and very full life. I could do without looking for lost shoes...yes, I'm still doing that...only now, it is for my own. Mostly.

girls 6 years later




             
The boys six years later (bad shot of Sam-he will probably be mad at me for posting this-sorry buddy!)

Saturday, December 6, 2014

Intermission



I have taken a slight leave of absence from the blog-not to worry, I will be back next week. The holidays..and the kids have kept me on my toes.  We have had a few adventures, a couple of mishaps..and sadly a horrible outbreak of eczema...I am just too damn itchy to write.  Never fear-I finally got an appointment with the dermatologist ( top of the DR. food chain)  this coming Tuesday (if I have any skin left),,so I should be back with some stories to share next Saturday,,like-My six year blogoversary  (holy crap-I've done this for six years) Sam has found his tribe! We found him a comic book/drawing class...misadventures of trying to get an IEP..*sigh* does it never end? Really? Does it?  I'm afraid that if I die..I will see "the light", follow it and it will lead me to an IEP meeting...and last but certainly not least-our wonderful Thanksgiving. So until then..I will leave you with this picture of our lovely Thanksgiving pizza....some of us did have turkey..at least a few of us did...




Saturday, November 15, 2014

Nourish..

~"If the sun refused to shine, I would still be loving you. When mountains crumble to the sea, there will still be you and me.."~Robert Plant and Jimmy Page









         
(I swear it only looks like I am choking him!)
"Let's go out tomorrow night.".."Huh?" I said.."What do you mean..you want to do something with the kids?" It had been a while since we all did something together."No-just me and you..lets go out." "What do you want to do?"..I still wasn't getting it...OUT? what does that mean? To me, "out" is leaving the house..having to actually put on shoes and possibly remember to brush my hair..out is going grocery shopping..or to the dentist or any other sort of appointment that I would much rather stay in than go to..He looked at me "The kids are old enough to stay by themselves..lets go out-just you and me." "You mean..on a date?".."Yeah-lets go out to dinner.".."Like a real dinner? At a real restaurant?.."


 We have gone out alone a few times in the past..usually to Christmas shop..or do some sort of errand that needed doing..but we haven't gone "out" for no reason other then wanting to since Oscar was a baby..and even then..it felt like a requirement..something that we were supposed to do because that's what keeps marriages strong. ..We tried!  We did.But, we just could not relax-all thoughts were on the boys.( who were not happy we were gone).."Do you think they're o.k.?  Should we call home?"-And that was before we had even left the driveway!  Back then-going out was an ordeal.. So we just stopped trying to do what other people thought that we should do and Instead we focused on this wonderful family that we have made. Preferring to be together-preferring to just..be...and truly-I've never felt like anything was missing-and I don't think that Omar has either. Sure, we have each had our "moments"..but mostly we laugh..which is easier then running away from home and say..joining the circus. 

 "Yes..I'll make reservations to someplace nice and we'll just go." "Alright.." I admit, I was a little hesitant..I haven't gone out out..you know, like to a REAL restaurant in years..I was excited too. A REAL restaurant!  With cloth napkins..salad forks!..no crayons..no basket of fries to keep kids happy..no lids on cups..cocktails! ..A place where I would be "ma'am" or "Kathleen"..or even "Hey you"..anything other than "mama.." I couldn't wait to get dressed and go..The kids were excited for us as well..it was almost as if it meant more to them than it did to us..which was a gift in and of itself. They are starting to be ready to let us go..lovely and bittersweet. We have done a great job and are about to be promoted..scary that.

So, I put on a dress that Omar had given me years ago-but I have never had a chance to wear..and with a DETAILED list of instructions(do not kill each other) and phone numbers (do not call unless there is blood)..we left. We went to an Italian Restaurant whose menu DID NOT include pizza..We had cocktails..and appetizers..a lovely dinner..I even had someone grate fresh pepper on my dish!  Do you know how long it has been since someone put something on my dish that wasn't pre-chewed? A very long time. We just talked..and laughed..eventually (the waiter really needed to clean up) leaving to get coffee and to take a walk...on our way home we stopped to get ice cream (for us!)..As we were driving home some four hours later..I looked at Omar and gasped.."We didn't talk about the kids once!" ..and almost simultaneously we said "Isn't that great?!" We laughed..and then got quiet...I guess this promotion thing goes two ways..maybe we too are ready to let go of them...just a little...lovely and bittersweet..

Omar and I celebrated twenty one years of marriage this past October. We have had wonderful times..and some horribly awful  times..we've walked through fire and have come through it changed..but we still walk together...we raise each other up, sometimes hold each other up.. he is one of the best people that I know-my partner in time. I look forward to our next night out together-and hope that it doesn't take another fourteen or so years to happen..


I HAD to add a picture of the dress!

Saturday, November 8, 2014

Small town big Halloween

~"Thunder bolts and lightening, very, very frightening me.."~Freddie Mercury



          





                 "Mama?"..."I need lightening bolts for my costume.." "Lightening bolts?" ..I pause...I am all ears, the outside world does not exist.  It is just me, Zoe and the very important next question ...the sixty four million dollar question.. THE question to end all questions!  

"What are you going to be for Halloween?"

I brace myself for the answer..will it be an easy costume? Do I have all the things to create  it at home?  Or, will I be desperately running from town to town to find the odd bits and pieces that make up the elaborate image that they have in their heads? Oh- Halloween for us-is a very serious business.  From the creating of costumes and the planning of trick or treat routes to the very serious candy trading at the end of the night (honestly, my kids behave like the heads of drug cartels when it comes to trading candy..intensely negotiating the value of chocolate vs. gummy treats) Very serious indeed.

 It isn't always easy living in a small town. Everyone kind of knows everyone..(sort of like six degrees of separation..give or take a degree) or at least thinks that they do. Sometimes I am just astounded by the things people tell me that I have said, done or even plan on doing. I mean, when the person you hired to work on your house (who lives an hour away) asks "Hey, when you are going to start building the second home?"..."Huh?"  "You know, the second house...over on the corner of your property..?".."What?" " The house you are building for your boys to live in when they are adults.".."Wait...what?  I'm not building my boys a house! " Oh.. that's not what I heard.." "Where did you hear that? " (insert name) told me." "I don't even know who (insert name) is!" "Well, that's what they said.." 

There are really wonderful things about my small town as well..One of them being that they take Halloween seriously too. Even better-everyone and anyone who wants to- can participate. From tiny babies carried by costumed parents to the senior citizens putting together a haunted house..that's actually scary! (Omar's heart skipped a beat when he had bent down to look at a "mannequin" that was laid out in a coffin-only they jumped out at him) It is a no holds barred celebration of all things scary-and candy. There are streets blocked off for trick or treating, fund raisers for the library and key club..restaurants providing treats and hot drinks..the police and fire dept handing out candy...even the funeral home (which gives out large sized candy bars) joins in. Some people decorate their houses and hand out candy in costumes-and character! (my favorite is lived in by a couple of guys who dress up and scare the hell out of everyone as they pass out candy..this year, one was a crazy bride(?) and the others were some kind of winged creatures crawling around) They out do themselves every year..It is fun, it is joyful, and EVERYONE is equal. Yes, Halloween is a big deal to all of us. 

 So, as I waited for her answer..I thought back to some of the more interesting costumes we have made.. "Ghost rat", "peg leg pirate clown" and my all time favorite "yellow dog with rainbow tail with a sun on the end of it"..and I hoped that maybe this year she would be a  cat, or a witch...something easy-that didn't require hair coloring or sewing. 
 "I'm going to be my avatar." "Your what?" "My avatar..the character I created for animal jam-Lily is going to be her avatar too" "O.K....what do we need ? "Oh..it's easy..just pants and shirts..and Lily needs a blue vest and a hat."  "That's it?" "I need lightening bolts for my hair.".."Anything else?" "No."   "That's all you need?".."Yes!"  Great!....And then it was Halloween.

"Mama..my costume needs more things..it's going to be boring!" "I ASKED you a million times- at. least.-if you needed anything else! You said no!"...and then..*sigh* her eyes tear up. "..*sob* I..Forgot"..now the tears are rolling down her cheeks..."I'm sorry! *sob*".."O.k..O.k..What else do you need?"..."A collar....and pink hair...and lightning bolts on my shirt".."Oh, is that all?".."Yes." sometimes sarcasm is wasted on the young...I managed to dig into my supplies and make a collar (old belt), I had pink hair color from who knows when...but the lightening bolt on her shirt? For some reason..I just could not get it right..maybe it was all the sugar from the eight million pieces of candy I had eaten that day (my girls don't share-so I buy my own...about a week before Halloween...and then.....I buy more because I eat it all..and it's Halloween and you have to eat candy on Halloween..it's the law..for me at least...) mental deterioration?  I do not know..But, it took me three hours to make. I think it actually came out great...My girls were happy with their costumes-even if everyone else asked them what they were supposed to be. (Personally,I think that Lily looked like a Walmart greeter ) We all had a great time..and I was able to write a post about it-when really, I just wanted people to notice the fabulous lightening bolt on Zoe's shirt. I'd say that calls for some candy...except we ate it. All of it...really.  



  

Saturday, November 1, 2014

.Scary...

~"What I do is between me and the Lord, to examine and possibly alter the state of grace in which I live, and thereby the state of grace of anybody who listens." Townes Van Zandt


 We were driving to the Halloween/party store the other night..all six of us squeezed  together in one van. This has slowly been happening less and less.  As the kids get older,(and can stay home alone) this type of adventure becomes rarer..So I was enjoying all of us just being together..the boys and their long legs squished into the back (because that is where they have ALWAYS sat) and the girls in the roomier second row seats. Omar and I up front- listening to them talk to each other..having random bits of conversation..("Does Ebola have something to do with your elbows getting sick?")  mostly they were focused on Halloween..my favorite holiday.."When did Halloween start anyway?"..."I think it was in the year seven.." "That doesn't make sense!  Everyone would have been seven years old!  Seven years old people don't make up holidays..because they don't have anyone taking care of them and feeding them and they were mostly probably eaten." 

I just adore they way my youngest thinks.She has an opinion on EVERYTHING...usually delivered with great disdain..She is so very passionate, so full of ideas..opinions...AND, she saves them all for home as she is not comfortable speaking at school. Which sometimes works against her..

  She came home the other day just beside herself. A group had come to the school to bring disability awareness and sensitivity training. Only...they didn't seem to be very aware or sensitive.  At least not to my girl..I know of this group as they have come to our school every year we have lived in town..I'm not a huge fan. They talk about changing attitudes and bringing respect towards people with disabilities..but how do they do that? By having non disabled people discuss what disability is. That makes no sense. You can not talk about inclusion when you do not include the people you are talking about in the conversation.(reading aloud a story or stories about a disabled person is NOT inclusion) It sends the wrong message. Us and them.  Unfortunately, it was one my daughter heard loud and clear.
   
 Imagine hearing an adult-an advocate-a sensitivity trainer-discussing a part of you..that  very real part that impacts everything that you do,..just imagine hearing this advocate discuss with another child that they hoped that a cure would be found for this part of you,....that your kind of brain didn't grow right..imagine hearing that at eight years old....As my daughter later wrote "It was shocking. I thought it was true.I got teary eyed...it made me feel different..but not in a good way."

  We are so weird about discussing disability. We talk around it..Pretend that there really isn't much of a difference between abled and disabled. Pat ourselves on the back for being so open minded and inclusive.  But really-are we?  Inclusion isn't declaring the "popular "can get a date with anyone" boy or girl"- a hero for asking a disabled kid to the dance, inclusion isn't cheering extra loud when an autistic boy makes a basket in a regular basketball game, inclusion isn't purposely sitting next to a person at lunch because they are disabled. No, these gestures, as well intended as they may be, are isolating.  They are a direct reflection of how disability and disabled people are viewed. Less then, incapable, one size fits all.
No amount of advocacy, or sensitivity training is going to change that until we include the disabled community in the conversation. That is the perspective we should be listening to. 

  My youngest had a bumpy week...luckily it ended on Halloween. My little town does an amazing job of it..closing off streets so kids can trick or treat safely, homeowners going all out with decorations and costumes, local businesses giving away hot drinks and treats..the senior center has a haunted house (and it is scary!)..all of this kind of restores your faith in the world..keeps you hoping that maybe things CAN change...My kids are quickly growing older,,they are moving forward...I need to believe that the world will move along with them..