Storm...

~"I think she is growing up, and so begins to dream dreams, and have hopes and fears and fidgets, without knowing why or being able to explain them"~ Louisa May Alcott, Little Women

"Mama?" I can read minds you know"..Oscar announced the other day "I know what you're thinking." "Oh really" I said."Yes-you are thinking that you want me to be in the world more." He looked so sad. "No, I'm actually thinking that I bought you new snow pants today..but yeah, I guess that I do want you in the world more..I need to know that you can take care of yourself when you are an adult." Being the master conversation changer that he is, he announced "I'm a misfit!" To which I replied."Nobody wants a Charlie in the box!" -.figuring that  this was just Oscar playing the game we usually play-quoting movie lines.(this time Rudolph the Red Nosed Reindeer.) "No", he said, placing his hand on my arm.."I really am a misfit." I just looked at him...I mean, what do you say to that? "It's o.k. because misfit just means that I am different." He was so earnest. "It is o.k. to be different." he added-as if to reassure me. "Yes, it is o.k. to be different-wonderful even...but it's hard too." "I know." The clarity of that moment screamed to me as to just how aware of the world that he is. This is his truth.

  It has not been an easy year for my boy. Puberty and all it's funky hormonal changes has reared it's ugly ugly head-and I think that for the first time ever-Oscar has begun to realize that he is indeed, like it or not, growing up.  That he will one day be an adult... Part of him hates the thought of any kind of change-but another part sees all the changes going on around him.  His brother Sam, two years older is chomping at the bit-longing to leave home..he wants to do so much-he talks of all of his plans and the adventures waiting to be had. And Lily-just two years younger..clings to her childhood..while tentatively taking baby steps into young woman hood. He is caught in the middle-and he does not know what to do with himself. Part of him accepts the change-but a bigger part wants things to remain the same. He is restless and melancholy..not fitting in his skin- a storm waiting to happen. 

  I was talking to a good friend about him over Thanksgiving-and she said "I worry that he will be lonely." Oh how that pierced my heart. My boy-who is so much more than anyone knows-or can know-or takes the time to know..a person who just wants to make people laugh..whose self proclaimed talent is "watching YouTube videos" This great being-so filled with compassion and empathy for others...that he might one day be lonely-breaks me. It tears me into a million pieces. But then I wonder-is my definition of lonely- Oscars definition? Is what he needs-and what I think that he needs- two entirely different things?

   I look at this almost young man of mine-who is so very capable,( but many times simply chooses not to be-and gets away with it because of the nature of his disability) and I wonder.  Yes, he can read, he can do math...but finds reliving videos in his head much more entertaining. And really, can you blame him?  Multiplication or YouTube Poops? What would you find more interesting? I don't know what to do-or how to help him. Do I trust that he will get to where he needs to go in his own time?  Or do I fret and worry that if we continue along this path-he is destined to a lonely life? Sometimes I hate being a parent. I have raised him (all of my kids actually) to be who he is-and yet, sometimes I spend too much time internally worrying about who he is not. It's maddening! I have to let go and trust in him-even as he tenaciously holds on to the world in his head.(because it is less frightening than the world out of it). How do I make the world outside of his head more palatable? How do I make him understand that there are things he needs to be able to do in order to live independently (as possible) while at the same time preserving the beauty that is him?

  Sometimes I really do wish that Oscar could read my mind. If only so that it would reassure him that I think he's wonderful.That he is enough  Deep down, I think that I know that he will be o.k....sigh...  We just need to get him over..through..around this puberty hurdle...let him settle, in his own way and time into becoming who he is...and in the meantime- do some detailed research into careers in YouTube viewing.  

I'll be (wanting Mike) Holmes for Christmas..

~"The four building blocks of the universe are fire, water, gravel and vinyl."~ Dave Barry

Oscar was so proud to show me his(already eaten) "gingerbread house"..

So...it's four days before Christmas and all through the house...my kids are actually kind of calm.( all the sugar from class parties has knocked them out)  It's ME who is stressing out!.  So much to do and so few days to do it in. Which I don't mind..I really do enjoy Christmas.  It's fun. It's all the stuff leading up to Christmas that makes things a little tense. The concerts, the parties.. 

 Not a creature was stirring... Just me..desperately trying to FIND the one (impossible to find) present Lily has asked for. In our case "Zoomer" the robotic dog-which , is NO WHERE to be found.  Believe me-I have had people looking. The thing is-she'll be fine if she doesn't get it.  More than fine. It's just that she has worked really hard this year-and I wanted her to have something extra special..We don't buy them many gifts other than at Christmas and their birthdays.(even though it feels as though they have an abundance of stuff). Part of the reason is because...well, there are four of them! I also like to believe that we are teaching them the difference between "want" and "need"..That it isn't "stuff" that makes you happy..blah blah blah...you know, all those parenting things you are supposed to teach. Are they getting it?  I don't know-but in the rich fantasy section of my mind (all parents have this section-you know, that place where you imagine them growing up to be decent, kind, good and giving world policy makers) they are.

The stockings were hung by the chimney...actually they aren't. We don't have a fireplace.   When I was a kid, I used to ask my parents what they wanted for Christmas.  They always said "good kids".  As I got older, I replied "Since there is no chance of that happening-what else would you like?".."Nothing-we have everything we need."..I never fully understood that until I became a parent myself. There is really nothing that I need. The kids are happy and healthy, Omar has a good job, we have a roof over our heads...Sure, there are things that I would like to change in the world. Peace, understanding-and good will towards everyone would be great.I am doing my best to help make those things happen (i.e. raising good kids) ..Today, Oscar  asked me what it was that I wanted for Christmas..and I gave may parents answer "Good kids".."But you already have them!".."I know! So, I guess I don't want anything."

In hopes that St. Nicholas Mike Holmes soon would be there...But..*sigh* that isn't really true.  I want Mike Holmes for Christmas.( For anyone who doesn't know who he is-click on the link) No!  I don't WANT him..although he does cut a dashing figure in his overalls...I want him to come and finish fix finish my house!  Oh how I love watching his show!
He meets with a distraught homeowner whose contractor has walked out on them mid job..Sound familiar?(Although, I bet THEIR contractors never came back 18 months later(with no contact in between) asking for their tools back) And within an hour-poof! The home is fixed. The owners are teary eyed and thankful. It's like he's a white knight-but with a tool belt instead of a horse. He and his trusty crew fix everything-and then some. Pointing out all the sloppy work that had been done by their previous contractor. Now, I will admit-I don't think our contractors were sloppy per say...they were just kind of.....neglectful.(forgot that we existed)  That doesn't mean Mr. Holmes wouldn't have things to point out! No indeed! He could just look at the jobs that Omar and I have started *sigh* but just never seem to be able to finish( between doing all the various kid stuff, going to work and laundry)..and he would have a field day.  I could even manage (or at least try to manage) to look ashamed of our work...although I would probably laugh. Especially as bits of insulation fell out of the walls, and especially when he stumbled upon Omar's tool of choice( steak knife)or my elderly dogs, two chickens and three cats which are scattered(mostly the steak knives) around the house and yard. It would make for good entertainment.  I would even try to cry a little at the end as we thanked him profusely. Most likely though I would just be shocked...gobsmacked even! Imagine-painted walls instead of bits of sheetrock, finished floors-electrical outlets with real covers on them! It's like porn for the housing challenged! Oh..I really really want Mike Holmes for Christmas...

Now Dasher! Now, Dancer! Now Prancer and Vixen! On, Comet! On, Cupid! On Mike Holmes and Blitzen!..alright, maybe I'm getting a little carried away here. But it's Christmas-and I will allow myself to dream a little. In the mean time-I've got presents to wrap, a robot dog to (maybe) find...and some insulation that needs to be shoved back in place. I hope that you all have the merriest of Christmas's and a wonderful new year. Oh...and if you happen to see Mike Holmes..tell him I said hi.

Sr. Godzilla and the reason I loathe children's concerts...

~"The main reason Santa is so jolly is because he knows where all the bad girls live"~

 George Carlin

Once again it is that time of year..a time where I gather my strength..gird my loins..and put on my game face.  Yes, it is time for the annual school Christmas concert. I know, I know...I've written about school concerts before..about the(very) beginning orchestra members..and the "catchy" holiday tunes...So clearly this is an issue for me. Honestly, I feel kind of bad about it..like I am somehow defective..or missing some sort of special parental gene for the tolerance appreciation of singing children. 

  I don't know what it is..or even WHY it is this way...but just the thought of a group of singing children makes me nauseous. Add dancing and I've got a full blown panic attack in the making.  It isn't that I don't appreciate that these kids have worked hard-I do! It's just watching the results of their work that sets my teeth on edge-churns the acid in my stomach.  The thing of it is-I look at all the other parents watching-and they seem enraptured..over joyed..thrilled and full of wonder..and I think "What the hell is wrong with me? Why don't I get excited when the kids start dancing?  Why don't I think it's cute?  Why am I just so annoyed by it? "

  A parent at the concert asked me if I remembered being in any "musical" productions as a kid...maybe there was some underlying reason as to why I loathe these events.  At the time I couldn't remember anything (which should have been a clue)...but later...some memories started to surface..Memories of singing in a school pageant...memories of throwing up...

  I believe it was in fourth grade that  my class participated in some sort of school concert.  We sang "Raindrops keep falling on my head". Now, I don't have any memory of being scared or upset by that...No, it was what occurred after the performance that forever damaged my perception of school concerts ! Yes! I do have an excuse, a traumatic event! A REASON why singing children make me ill. Oprah would call it an "AHA" moment! An "Aha" moment involving...nuns. ...Oh, I can see it clearly now...being led off of the stage and into our classroom by the ever so scary Sr. Catherine (You're cruising for a bruising!) Marita. She was razor tongued and quick as a whip-Heaven help you if you were not exactly "student" material. She could haul a kid(by their ear) from the back of the room to the front of the room in under two seconds flat-which is probably some kind of Guinness nun hauling record.(which I believe are stored somewhere under Vatican city-along with clickers, rulers and mummified children's ears.) Needless to say, I spent a large part of that year trying (and failing) to be invisible.  I lived in absolute terror of her.. 

  So, there we were being led back into the classroom by Sr. Godzilla Marita....where she had a "surprise" for us! We were each going to get a bottle of soda for performing so well.  Back in the 70's-soda was a treat..as was any kind of junk food. It just wasn't part of our diet-except for on special occasions. So, we were all pretty excited by this. Each of us were given our own bottle (and it was big-maybe a liter) of off brand(of course) cola. The problem was-we were given exactly five minutes to drink it..AND being that it was a rare treat for any of us...we weren't going to not finish it. Now imagine if you will...a group of nine year olds-each chugging down a liter of soda as quickly as they could...the imagery enough is creepy-but the results..oh the results were horrifying..especially for a boy named Sean.  (I can't believe that I remember that!) We downed those soda's as if our lives depended on it.. almost finishing as a group..all of us out of breath, a little bit sweaty,  letting out a collective belch...except for poor Sean...who simultaneously burped and projectile vomited this seemingly VAST ARC (think Charlton Heston as Moses parting the Red Sea) a veritable GEYSER like FOUNTAIN of soda..right on to Sr. Godzilla's Marita's desk. There was a small burp...and then...with the exception of soda slowly dripping off of the desk...drip...drip....drip...silence. 

  I honestly do not remember what happened after that-or more importantly, what happened to Sean.  (Surely we would have noticed if he didn't come back to school. Right?) I wonder though...is this the underlying reason for my "children's concert" anxiety?  Is my worry over what happened to Sean somehow to blame?  Am I really not missing the special "I love children singing in groups" parent gene? Can I blame my anxiety, nausea and downright contrariness over all things "kids concert" on Sr. Godzilla Marita?hmmm..
 Works for me!

  I suppose someone(else) could hunt her down.....and find out the truth of what happened that fateful night. If you do-please-just DON'T tell her where I live!...and for the love of all things holy-protect your ears!.

Just so Thankful...

~"I am thankful for laughter, except when milk comes out my nose."~ Woody Allen

    I was in the grocery store a few days before Thanksgiving...getting some last minute necessities (pizza), when I bumped into an old acquaintance.  She happened to glance down at my cart- and she said "I guess YOU aren't doing any cooking for Thanksgiving.".."Ummm..  "No..Omar does most of the cooking.".."Well , you know...YOU had BETTER appreciate him!" Huh? I wasn't really too sure how to respond to that..I mean really-what do you say?  "Great Idea! I'll start doing that right now!...Let me just pay for this pizza first..." ?  Honestly, why would anyone assume from frozen pizza,  that I don't appreciate my husband?  Why do people do that?  It isn't just about husbands..it can be anything. Just take a look at Facebook.

  A few years back I posted something like "The kids are finally in bed-hooray!..can't wait till they are old enough to put themselves there.." Instead of the "likes" and camaraderie I expected-I got "Oh...they are only this little once".."I hope you appreciate it because they grow so fast"..."you are going to look back on these times and miss them (smiley face)"  What is it with this shaming?! What-I'm not allowed to want my kids to grow up?  Are you serious? I'm giddy with the thought of it! And you know what?  They do all put themselves to bed now-and I don't miss those times one bit-not even a little. I love my kids..I have loved every stage of their lives..Sometimes I think that I even overly love them.."Mama..I'm going outside."  "O.K. Buddy, give me a hug..I love you! " "Umm I'm only going out to the garage."  "Well a lot can happen between the door and the garage.." "Mama!"

  There isn't a day that goes by that I don't appreciate all that I have. I am a lucky woman-I have a great family, a roof over our heads..we're healthy, we're happy. I am thankful for it all...but come on-just how consciously thankful does one have to be all the time? I mean doesn't anyone have to pee?(although I'm sure that there is someone somewhere who would LOVE to tell me that I should be thankful for being able to do so!) Or sleep? Can I not be thankful for being blissfully ALONE without someone telling me how much I'm going to miss my kids one day? Is there a "Bureau of Thankfulness" that I don't know about that weighs and measures each persons thankfulness and places them on some sort of top secret list of thankful behavior?

  I happened to notice that people in the month of November (Thanksgiving month for all my non U.S. friends) started doing this Facebook trend kind of meme.  For every day of the month-they would mention something they were thankful for. Now, that in itself is a lovely thing.  There is nothing wrong with sharing all that you are thankful for (with your 50 billion friends). Every day, I would see some wonderful posts from people being thankful for their families, friends...even coffee. But, by about the eighth of the month or so...people were running out of steam.  They had already listed everything...and yet, they still had twelve days left. Things got a little creative after that.( "I am thankful for sidewalks.") Mostly they just started rephrasing everything they had already listed. I found it amusing. But, that's just me..(.I've probably been blacklisted by the Bureau of Thankfulness for this...)

  So, This Facebook thing got me thinking...Aside from family, friends, pets, nature, a roof over my head, health-and all that those things encompass...what else should I be thankful for?Am I thankful enough? So, just in case... I made my own little list.
 "Ten other things I am thankful for but may have failed to mention-but  proves that I am appreciative of all things all the time every moment of every day-the end." 

1.  I am thankful that cats don't have thumbs. If you are or have ever been a cat owner-you will understand.
2. I am thankful that (so far) there have never been any monsters under my kids beds or in their closets when they have asked me to check (and Omar was out of town)
3.  I am glad that said monsters have also not appeared in my closet or under my bed.
4. I am glad that my children no longer watch PBS kids..and I look forward to the day that I forget ALL the dialogue from Thomas the Tank Engine (including songs) so far-the latter has not happened but I am hopeful.
5. I am thankful that my house is in a perpetual state of remodeling-because when anyone comes over, I can explain the mess by saying "we are remodeling" even though the mess has nothing to do with remodeling and everything to do with my being a crappy housekeeper.
6. I am thankful that one of my daughters has a field trip tomorrow-so both my girls won't be home(fighting) and the house will be quiet-even though I'm DEFINITELY sure that I will look back on and miss these times with great sorrow because they have grown up so fast..(not)
7. I am thankful that I can now use the bathroom by myself..although I promise to look back with great sorrow that my kids have all grown up so fast and no longer need to accompany me to the bathroom..
8. I am thankful for my bathrooms. (if you have been reading me for a while-you will understand this) And if anyone asks-I am thankful that I have bodily functions..I hope that I never look back in sorrow because they have gone away.
9.I am thankful that my daughters no longer listen to Katy Perry's "California Gurls" over and over again. Although the lyrics(like all the Thomas Train stuff) have been burned into my brain-which is a good thing...because when I look back all sorrowful that my kids have grown up-I will always have Thomas...and Katy to remember them by.
10. I am thankful for my zombie display...even though the recent spate of bad weather has destroyed it and I might have to take it down..Although I might leave it up anyway and say it's a mess because we are remodeling...

  So, Thanksgiving  has come to an end..or at least the holiday has.  We had a lovely day surrounded by family..We ate the wonderful meal the husband I appreciate prepared, we drank..we made merry..It was everything it was supposed to be..And yes-I was thankful..

Thankful...

Just a photo post as I have guests for the holiday..

 

    Omar cooked not one-but two wonderful turkeys..I love turkey and look forward to days of turkey sandwiches!

The kids had their customary holiday pizza.












It was a lovely day spent with most of the people that I love best in this world.  I am thankful for that.  Actually, I am thankful for many many things..and they deserve a post. But, it would be horribly rude of me to disappear with my laptop to write, because I have guests AND especially because being thankful for those guests would be part of the post. Do you know what I mean?  So..a post is going to have to wait a few days..Until then-I hope that any friends that celebrate Thanksgiving had a wonderful holiday..and for my many friends that don't celebrate it-I hope that you had a lovely Thursday.

On death and festive zombies..

~"Life is pleasant. Death is peaceful. It's the transition that's troublesome"~Isaac Asimov 

 

"Mama?  What happens to you when you die?" "Well..you know we've talked about heaven and reincarnation..all the different beliefs that.." "No..where do you go?" "What do you mean?" "Do they bury you in the ground?" Well..sometimes..I mean you have been to cemeteries before.." "You mean graveyards?" "Yeah.." "Lots of people are buried there.." "Yup".."But..But..How do they breathe?" "Well..they're dead-they don't need to breathe anymore." "How do they get out?!" "They don't need to..they have left their bodies.." "Huh?" "Oscar,   dying means that your spirit, the thing that makes you-you.. leaves your body.." "We turn into ghosts?!!"  "I don't think so..I really can't tell you exactly what happens..but..well, lots of people have different ideas about it..you know that..we've talked about it."  "I know."  Well...what do you think?" "I don't know." "Well...was there stuff you didn't understand?" "I don't know."  "Are you worried about dying?" "No.." "Well..help me out here bud..I'm not sure what you are asking me.." "Can I go on the computer?"

  Death is a tricky subject with my kids. It isn't that it's difficult..more that it is hard to explain..They all have such unique perspectives on it. When Sam was little, he came to me claiming  that "when  people die they get to be come back as something else." I thought that this was pretty cool considering he wasn't much older than three.  Lily on the other hand-is very anxious over the idea of it.  Three years ago, my sister and father passed away within six weeks of each other. .(The kids hardly knew their Grandfather and they did not know their Aunt.) It was a difficult time for me-and,because of that, it was a difficult time for my kids as well Lily was a mess. Crying all the time..having trouble sleeping..I thought that maybe she was worried about MY mortality...So, during one of her crying jags..I pulled her onto my lap..rocking her until she calmed down enough to talk.."Lil?  You know your Aunt was pretty sick..and Pop?..he was 86!"  "I know." "Well...for them..death was a good thing..or an o.k. thing.  your Aunt was in a lot of pain and she wasn't gonna get better..and Pop..he lived a really full life." "I KNOW!" "Well..I just wanted you to think about that..I mean, I'm healthy..and I'm nowhere near 86." "So." "So..I just wanted you to know that I don't plan on dying for a long time.""O.k?.".."So I don't want you to worry about me or Papa going anywhere for a long long time..o.k.?"  "But...but..I'm not worried about YOU dying!  I'm worried about...(bawling)  ME!" *sigh* so, after reassuring her that she had very little mileage and was in the best of health..that her demise was so very far into the future..she was fine. Fine. No more anxiety..no more crying..she was good to go.

  I admit, it is a tough subject to tackle with kids.  One of the ways we have discussed it-is through religion. We try and teach our kids a bit of everything. They know about Jesus, Mohammed , Buddha..You name it-and we probably have discussed it. They know of the Bible, the Koran, the Torah. But the main thing we teach is respect.That faith is personal. That it is not our place to question anyone's personal beliefs. Nor was it anyone's place to question theirs( they have them).I have really drilled in the idea that they need to respect other peoples faith and points of view.  They do a pretty good job of it...except...well..my kids can be literal thinkers..and it gets me in trouble.

  Every summer, my town celebrates itself by throwing a festival. There are rides and food..entertainment and all kinds of booths. One of the booths is run by a local church. Now, I have nothing against this particular church..but it seems that no matter what-every single summer we have been here..I have managed to offend them in some way or other. Usually because of what my kids say-or don't say.  It never fails! We'll be walking by..and someone will catch one of my kids eyes.  "Do YOU KNOW Jesus?" They'll ask. (My kids have absolutely no idea of the context in which this is meant. None.)    "No." they'll say-or even better "Who?"..immediately all eyes turn to me in disdain...as if I were somehow depriving my children of religious knowledge and salvation..it is very uncomfortable-for me.  My kids?  They don't notice..except for Sam(who I explained this to)-he thinks this is HYSTERICAL. Next year-he's taking his brother and sisters around.

 I really don't like when someone thinks I'm disrespectful of their beliefs. That is the last thing I ever want to do...well..mostly. O.K...sometimes..well..I'll tell you about this week and let you decide..

  Now, my town celebrates Halloween. We have a parade, trick or treating..a haunted house..food..it's fabulous.  This year, in honor of the holiday-we decorated the house. We had cobwebs..and "Happy Halloween" signs..and a special display of zombies....

 I thought that they looked great.  So much so..that I still have them up.  This has absolutely nothing whatsoever to do with laziness or a busy schedule!  Well, this past Tuesday, as I was pulling out of the driveway, I noticed a car parked in front of my zombie display.  I thought perhaps they were enjoying our tableau..and drove off. I didn't think anything more of it until Wednesday..as I was pulling IN to my driveway..I noticed the same car was parked there. My zombies are delightful..but two days in a row? I got out of my van to investigate just as a well dressed gentleman got out of the car and walked towards me..He didn't look happy..he was actually sneering! He said "We were in the neighborhood and thought you'd be interested in this"..he handed me his tract and walked quickly away..

 As I wrote earlier, I am very respectful of religious beliefs and faith.  It is certainly not my place to judge! But this kind of got me mad. (the inside of the pamphlet basically said I was going to hell unless..blah blah blah...) My zombies were Halloween fun. That is it. They certainly weren't meant to be a religious statement.Nor were they intended to mock anyone.  So...today, in response to that pamphlet, I decided to do a little early holiday decorating...

.    I really really hope that car stops by again.  I think my zombies look festive.

Confessions of a Worrier mother (four years later...) Wright is Wrong..

~"Charity creates a multitude of sins"~Oscar Wilde

 I have been blogging for almost five years. The whole reason that I started blogging was because I simply could not fathom how autism was being portrayed in the main stream media. I remember thinking"This isn't my experience-this isn't the way our life is..there has to be other families like mine!"  Thankfully, I have found many-both on and off line. This is a slightly revised post from 2009. It was my rebuttal to the horrible video "I am Autism" that Autism Speaks had put out. It scares me that four years have passed-and still, the idea that someone can speak so openly and horribly about human beings is considered (by many) acceptable. Four years later-and we need to do better.  There needs to be a lot more listening and a lot less judging in the neuro-diverse community. 

  It started with a blog post on acceptance. Which, as per usual-turned into an argument.  I myself made a few comments. One in particular was in direct rebuttal to something a parent said. They made the comment that 1.5 million people in the U.S. SUFFER from autism-I replied with the simple statement-"my kids don't suffer" In turn I was told that I was one of the "lucky ones"-and then given a detailed description of all of their struggles. I never implied that my children didn't struggle- I simply stated that they didn't suffer. They were right however in one aspect-I am lucky. 

 Three of my four kids are on different parts of the autism spectrum. They work very hard to try and navigate a world that doesn't always make sense to them. Every day poses new challenges. Yet, they face them-because I ASK them to. How staggering is that? Being a mother is a powerful job-definitely not for the faint of heart. I take my position seriously. Oh, I have made many mistakes-which I no doubt will hear about in years to come. But I am learning. I think the most important lesson has been that children become what you tell them they are. All children, no matter what their ability. It is for that reason I talk about acceptance and love instead of laundry lists of symptoms.  My kids have disabilities, they are not broken. They are not empty shells, they don't need to be "recovered". They are right in front of me (most of the time asking for things) I had best make sure my words have substance and meaning. Because those are the words that they will carry with them for the rest of their lives. I am their mother. That is my job, my responsibility, and privilege.

It always astounds me when I am told things like "you are one of the lucky ones" or "your kids aren't really autistic". Astounds me. What I find equally mind blowing is the thought that because I accept my children, accept that three of them have autism-I don't do anything to help them. Nothing could be further from the truth. I just don't have the need to advertise the things that we have done, in such a way as to garner sympathy or admiration for myself. I'm a mother, and I'm just doing my job. It is not about me. It is about my children. Yes, we have worked really really hard, but my kids...they have worked harder. I might do the steering, but the driving is all them. They are incredible human beings-all four of them. I am blessed.

That's not to say I don't have days when I want to run away from home. That however, has nothing to do with autism ..but more to do with the fact that I have four very active kids, three hyper dogs, an overly affectionate cat, a leaky roof, faulty electrical wiring..and a myriad of other things.(sigh) I think that you truly know that you're a mother when a private and secluded bathroom of your own is your secret desire.

I am not a warrior mother. I am more of a worrier mother. I worry about getting my kids the appropriate services, I worry about their education, I worry about their needs being met, I worry about discrimination, I worry about them going out into the world as adults, I worry about films like "I am autism", I worry about the power of people like Suzanne wright and her awful words, I worry that they do not give voice to the people who do have autism...I worry that this will somehow demonize my children-who will always have autism, I don't however worry about "recovering", "curing", or somehow defeating them. I don't worry that my children view themselves as somehow broken and needing to be fixed. I don't worry that they see themselves as somehow less, or as a burden. They know that they are cherished, that they are loved, that they are different-that different can be hard, but it isn't wrong. I recognize that my children, all of them, are human beings. Deserving of the same respect, treatment, inclusion and acceptance as is any other human being. I recognize that it is my responsibility to try and make the world a better more accommodating place for them. I recognize the importance my role as their mother is. I think about all of this and can say with certainty, yes, I am one of the lucky ones.

Mental floss...

~" We do have a zeal for laughter in most situations, give or take a dentist."~ Joseph Heller

           

So, I had my first root canal ever yesterday.  I don't recommend it. Although, I feel like I should get some sort of award -or at least have been given a party..Not for having done this-but for having avoided one for almost fifty years.  Which considering my experience with all things "dentist", is a pretty amazing feat.

  My first dental experience ended in blood-the dentists.  I must have been all of three..Yet, I can still remember the light blue booster seat I was placed on...I remember the bright lights, the smells and equipment...I remember sitting there-wide eyed and trusting- taking it all in..as innocent as any quiet three year old can be..when seemingly- out of nowhere- a GIANT HAND -attached to a white smocked man- swooped in, grabbed my nose-and SQUEEZED it, while simultaneously yelling "Honk! Honk!" What else could I do but bite him (hard) and run. Unfortunately, having short legs...I did not get very far. Needless to say,we had a bit of a strained relationship after this. It did not help that I refused to open my mouth more than two inches...or that he had learned his trade from the Marqui de Sade school of  dentistry. I remember being thrilled when we moved (I was 11) and my mother excitedly announced that we would be going to a new dentist. Not only would the dentist be new-he also had "modern equipment!"...it was "high speed and electric!"  . ( I had no idea that there were options...)

  Our new dentist seemed fine-at first....Until he uttered his first "open please"..Sure, he had all modern equipment..but, as I innocently sat there. his hands slowly coming towards my mouth (with the mirror and pointy thing) I saw that he also had Parkinson's disease I am not kidding. This was the dentist my mother was so excited about. I don't know what it was..but she seemed to have had a knack-a special skill-a talent even- for picking the absolute worst...the bottom of the barrel..the least professional person when it came to doctors and dentists. I would not be surprised if she had a special directory of them. Unfortunately, I didn't realize this till much later in life.  For instance- It wasn't until I was in my late 20's that I found out that most people had Novocaine for dental work.  I had thought that it was only used in surgery...So, maybe now you can understand why I believe that I deserve recognition for having had a root canal?  

  I do have a wonderful dentist now.  She insists on taking the utmost care of both me and my teeth.  She also insists that I come to my appointments heavily medicated(and with a driver).  It works out pretty well.

Unfortunately, my past experiences caused me to neglect my teeth for many years. Which sadly, I'm paying for  now. I try to use myself as an example to my kids. "This is why you brush and floss!" I tell them..and for the most part they are pretty good.  except for Zoe-who thinks that brushing your teeth is "boring." But-more importantly...they like the dentist that they go to. They actually enjoy going. (I know!) The fact that he has arcade games of both Pac-man and Space Invaders and he plays videos for them is just icing on the cake.

 I really hope that they don't have the dental problems that I deal with..I'm forever telling them "You only get one set of adult teeth!" Which kind of annoys me..I mean-I don't care of you are religious or scientific-or even a bit of both..but doesn't one set of adult teeth seem like a design flaw-I really think that it could have been done better. This is one of the questions I pose to my dentist...along with "Why teeth? I mean-what is it about teeth that inspired you to learn your craft?"..but she just smiles indulgently at me..as if I'm just very heavily medicated..which I am..but....I digress..

the whole point of this post was to say that I had a root canal yesterday and am too medicated to write this week...and..well...yeah.

Spark....

~"But if you know what life is worth, 

You will look for yours on earth: 

And now you see the light, 

You stand up for your rights. jah!"~Bob Marley

 

One of my most favorite memories of Oscar is from when he was just a toddler.  Oscar didn't really start verbally communicating until he was about four years old..So, in the years before that, he would find   interesting ways of telling me what he wanted. If he was hungry, he would point at what he wanted and grunt..I never tried to force language on him..but I did talk him through whatever I thought he was asking for.."Oscar, do you want fish crackers?"..I'd look at him-and his reaction would give me his answer..i.e. he would hop if I was right-or he would continue to point and grunt until I got it right...and after a few guesses-if I didn't get it right...he would scream...really loudly...and the more he screamed, the more anxious I would get..quickly pulling every item from every shelf down..until the kitchen looked like a battlefield-and the both of us looking like refugees...tear stained and just plain worn out....He was so very frustrated at not being able to speak..I felt like a failure because I couldn't always understand him. So...going back to my story....

  For a toddler that couldn't really speak, Oscar loved words.  He loved being read to..loved knowing what words were-even though he couldn't say them.(He was a huge fan of flash cards)  He loved them so much that he would bring me any and everything he could carry that had writing on it..thrusting it into my hand and pointing until I read them. Books, cereal boxes...nutrition labels!  If it had writing-he wanted to know what it said.  One day after he had gone through every possible item he could find (and he really was looking) he  came to me carrying a shoe. I looked at him and said "It's a shoe."..I wasn't sure what he was trying to say..because I  hadn't realized that this shoe- had writing on the inside and, well...he wanted me to read it..."Bass size 9" I think it was a letdown..I mean, he had been so proud of himself for having discovered the words..that he seemed a little disappointed that there wasn't more to read.  I thought this was kind of funny so I said "Buddy-if you really want me to read to you-you are going to have to bring me something more than a cereal box or a shoe..maybe something with a lot more words on it...and off he went..I wasn't sure what he was going to do...but I was pretty amused when he came toddling back-a spark in his eyes...carrying-of all things-the phone book!

  That happened over ten years ago...and although he still has the best sense of humor..the spark is fading. I am at a loss at how to help him get it back.  I am at a loss as to how to make school work for him.  I am at a loss...and I am lost.

  Oscar is one of the best people that I know.  sure, I'm biased..but still. He is so very caring and kind..such a decent human being. If anyone he knows(and sometimes doesn't know) is hurting in any way-Oscar is the first person there. Out of all my kids-he is the most intuitive...the guy who knows just what someone needs to pick them up. Yet, out of all my kids-he is the one who still struggles with pragmatic language. Struggles with conversation..struggles with comprehension.. Yet-it doesn't stop him.  Last week was a rough one for me-and by Friday night I was just plain..done. I'd had it..I didn't know whether to laugh, cry or just fall into a coma. I was in a bit of a mood-so, I sneaked off by myself outside..away from everyone. Better to be cranky by myself than to take it out on my family-right? I did not know that Oscar had noticed...and..Oscar being Oscar decided that I needed to be cheered up. So, there I am..sitting hunched over-probably muttering all kinds of words..when Oscar appears.."Hey Mama! Look what I found?  I looked up...and there he was...just standing there...wearing my very lovely beige "Victoria's Secret" push up bra.  "How do I look?"  I burst out laughing.  He doesn't stay to laugh...doesn't prance about..His job was done..he took off my bra and went back to the computer-just like that. (he did let me take a picture though) That is my boy.

 In school-it is a different story,  One day he can do his work-the next he appears to not be able to. I'll say-"Hey-maybe he would do better working with peers?" and I'll get "He'll just charm them into doing it for him." I'll get a comment  he's"really participating in health class!" and then I worry-are they just saying what I want to hear? I will get "He really worked hard today" on one day- only to hear "He was in his head and giggling all day today." the next. There are many people who say "he can" and an equal amount saying "he can't".. I'm not placing blame-nor am I pointing fingers. Except at myself.  I can't seem to find a way to help my son.
                                                         Yes-I have asked him.
"Oscar-do you like school?"  "Yes."  "Is the work too hard?"  "Yes"  "Is the work to easy?" "Yes" "Why can't you do your work?"  "I don't know." "How can I help?" "I don't know." "Do you have fun at school?" "No it's boring." "I thought you liked going?" "I do."  "But it's boring? "Yes, no..I don't know."

  Of course-it would be so easy to say "Oh he's bored because he's really just brilliant!" But my boy is not brilliant (he is to us) at least in the way some people want to categorize all autistic people. We aren't going to suddenly discover that he's a genius in physics..or an eloquent writer..or a public speaker. No, Oscar falls into a weird gray area in the autism world. (He knows that he is autistic-but he doesn't really give a crap.) He is neither disabled nor abled enough  to get whatever it is that HE needs. This, I think is one of our biggest problems-that and the fact that no one can figure out (Oscar included) exactly what it is that he does need...No matter what though-he deserves more than he is getting. He deserves a school that is as interested in his education as they are in the non disabled kids educations.

  Right now, he is on his laptop pulling up images (of what- I don't know) that are making his sisters laugh hysterically. His way of getting them to stop fighting with each other.  He'd be such a great diplomat.  Probably better than some of the ones we have now-I could see him, addressing the U.N. in a tailored suit and bra.  Somehow he would make it work-the world would be a lot happier... For now though-I just want to get him through school..figure out what it is that he needs..My boy needs his spark back...

On the 7th day-she's resting..The ramble of a really long week..

~"Holy crap I'm late!"~ Me

I was going to sit down and write a post about a couple of important things that have been going on with the kids...but-this week just turned into a cosmic free fall of events and obligations many of which..well..I kind of forgot about-until the last minute...

  On Monday, I had an appointment in the morning.  Living in a small town has some great perks-until you have to actually go somewhere-because we are at least a half hour from  anywhere...I don't know what it is..I know that if I have a scheduled appointment out of town-I have to leave by a certain time in order to get there. It never fails-I'll be up, dressed, ready to go...and yet-ALWAYS I wind up leaving twenty minutes later than planned..which means that I have to rush...and when I have to rush..I ALWAYS get stuck behind the slowest driver in the universe-who seems to have forgotten that their turn signal is on..while constantly stepping on their brakes. (and there is no passing lane)-or a school bus making frequent stops..with a bus driver(not from my town) Who I just KNOW is reveling in their power of making me stop EVERY twenty feet and wait. The thing is-if I had left at the right time-I'd have been very early to my appointment..instead I wound up being over forty minutes late...Which in turn, led them to reschedule me for a later time. So that my early morning appointment turned into an early afternoon appointment..and I got home just as the kids were getting off of the bus...Lily and Zoe running off to let me know that they promised I would bake muffins for their healthy snack parties on Thursday..

  I should have just spent the rest of the week in bed.

  Tuesday morning...the dawn cracked without me...because I somehow turned off my alarm and went back to sleep..only to wake up really late... late enough that I had to rush (my rush adverse) kids so that they would make it on to the bus. Unfortunately, I forgot to check the weather..which had gone from a balmy 50 degrees down to the low 20's...AND I did not know where their winter coats were..I already fear judgement from what my kids have in their lunch boxes..(I can't help that Zoe's ONLY acceptable foods are chocolate pop tarts and diced pears!(-we're working on it) I was NOT going to send my kids in their flimsy sweaters while there was frost on the ground. So...I rushed like a crazy woman-madly tearing apart the attic..closets..and finally the garage (which we had cleaned and organized the Sunday before-which looks worse now than when we had started cleaning and organizing it) I found a musty coat of Omar's for Sam..Sam's old coat for Oscar..an old coat of mine for Lily...and Zoe..well, she had her old coat from 2 years ago (pop tarts and pears will do that). My kids may have smelled like a donation bin-but they were warm! AND they were on the bus! After they left-I went grocery shopping. My cupboards were bare..and I had a fund raiser..and now- healthy snack parties that I promised to bake for. I  did remember my grocery list-unfortunately I didn't look too closely at what I was buying and wound up with three packages of fat free muffin mix..fat free? EWWWWWWWW! . I was going to simply turn around and go back to the store..but I noticed that Dorothy (my chicken) was behaving strangely.  She was pacing and extremely agitated- yelling her little chicken head off...so, I went to investigate. Walking around the house..crawling through bushes.where I flushed out a sick fox...a sick hungry fox..that was a bit confrontational before deciding to run off.  Now, a sick fox can be a dangerous animal. So, I did the responsible thing and called the game warden...and waited for him to call back...and waited...and waited. When he finally did call me..he said that he was in another town..and I should just go out and shoot the fox and leave his body in the woods. Right. I'm not even going there.  . By the time I got off the phone with him...*sigh* the kids were getting off of the bus..."Oh well, there is always Wednesday" I thought with my naive mind..

  On Wednesday, everything was right on schedule..the kids got off o.k...I had my coffee-life was calm. I thought I would start my day by visiting my favorite librarian-and then, I would go back to the market and pick up my forgotten baking supplies. I had a lovely visit.  On my way out of the library door, I met a gentleman who was handing out homemade paper weights (he made them from rocks) He insisted that I pick one..saying "You have to pick one you like and then you will have good luck" I thought it was sweet-so I picked one out...thanked him for the lucky rock and got into my car. Only to back up and hit a car that I had not seen parked behind me. Lucky rock indeed. Of course the driver was no where to be found. (there was no damage-but I left them a note with my info just in case) I went home and called my insurance company-again, just in case...and by the time I got off of the phone...guess who was getting off of the bus? *sigh*  So, I improvised with the fat free mixes-adding eggs and cream..keeping my fingers crossed they would be edible..

  Thursday was Halloween! For the most part the night was great.  It poured rain-but that didn't stop my town from celebrating. Everyone had a great time...My only issue was in the morning.  I stopped by the girls school with my "improved muffins" and other healthy snack like things...Only...when I got to Zoe's classroom-I seemed to be the only parent who brought muffins,,,plates spoons and yogurt..actually-maybe the only parent who brought anything...which makes me question whether Zoe's healthy snack party was a ruse...something that she made up-because her sister was having one and she felt left out. I'm wondering if her teacher thought my behavior was odd.   Was I conned into preparing for an imaginary party?

  Zoe went to bed Thursday night with pink and black hair from trick or treating (She was "Draculaura from "Monster High")  I told her that if she did not get in the shower, she would have colored hair in school the next day.  She said that she didn't mind.  It would be "fun".  "Are you sure" I asked skeptically? "Yes!" she exclaimed. On Friday morning-Zoe lost it.  Loudly exclaiming that she was NOT "going to school with pink hair!"  She yelled-she cried-she would have gnashed her teeth if she had any. (she's missing quite a few) Have you ever tried to scrub pink hair spray out of someones hair?  Have you done it in under three minutes flat-dried it AND got your child on the school bus?  I did.  It was exhausting.  I would have liked to go back to bed-but, I had things to do.  I baked for the the special Olympic swimmers (I volunteer as a chaperone every Friday- to swim practice) I baked for Saturdays bake sale..I washed Lily's dalmatian costume-(as it had gotten muddy the night before-AND she needed it for the Girl Scouts costume dance that night) And all of the spots washed out.  I ran to my volunteer job..I ran home..I re-spotted Lily's costume...the kids came home...I rushed them through dinner..tried to get the girls in their costumes..repainting Zoe's hair..and...when Lily decided she might not wear her dalmatian costume yelled things like "I spent 45 minutes putting those spots back on! You ARE wearing it!  I did not re-spot those pants for fun!" Needless to say-she wore her costume. On our way to the dance, I misspelled the name of the town we were going to and took us 30 minutes out of our way..but we eventually got there...The girls had a great time.

  I really wanted to sleep in this morning-But, I had a fund raiser to be at by  9:00..Which I arrived at (baked goods in hand) at 9:30. At least I made it there!   I am spending the rest of the day catching up on all the things that I didn't get to this week...and finding coats for the kids...and sadly-putting the garage back in order.  I'm not leaving bed tomorrow-and depending on what life has in store for me next week-I may just stay there.  Seems to be the safest bet...

No skeletons...letting a Zombie out of the closet...

~"I expect a Zombie to show up on 'Sesame Street' soon, teaching kids to count"~

George A. Romero

I used to feel that I shared an understanding with Zombies, a sort of "kindred spirit" special bond kind of thing.. The aimless shuffling and lurching-the glassy eyed lust for brains -although I never wanted to eat any. I was more of a vegetarian kind of Zombie.  The only brain I was interested in finding was my own ..At the time, we were living in the land of sleep deprivation...and a fully functioning brain was nowhere to be had. 

How times have changed.  When my boys were younger..I don't think that they believed in sleep. Really.  If staying awake for sometimes day long stretches were a religion-my boys were devout orthodox followers. Although, they worshiped very differently.  Sam did sleep for stretches at a time..I don't think Oscar slept for the first four years of his life. But, by the time he came along-we were already so sleep deprived that it just seemed like "business as usual".

No, Sam would trick us.  He would go to bed..and "look" like he was deeply sleeping.  enough so that we felt confident in relaxing into sleep ourselves. We were so hopeful!  At around 2:00 a.m., he would BURST into wakefulness..just EXPLODE into full consciousness.. He was awake-and like it or not-everyone within a five mile radius was going to acknowledge this. The only way we could soothe him...the only way he would calm himself down was by watching the same video...over and over.  "La La and the bunnies" (from the Teletubbies.) If there were a "Guinness" world record for watching one specific video-Sam would have owned it-in spades.  To this day, I can still (sadly) repeat most of the script.  not that there really was one-as Teletubbies say very few words..but still! And....*sigh* I have to confess, La La the bright yellow Teletubbie brought something out in me..something that kind of scared me (at the time) Something that to this day still causes me to cringe a little....Deep Seething Anger. Yes, I must admit- I wanted that thing dead.  I even imagined the headlines.."Mother loses her head-decapitates La La " or the Lifetime movie "Death in Tubbieland-a Mothers rage."(They'd probably get Valerie Bertinelli or Alan Rickman(think Snape) to play me)  I don't know what it was-but by the fourteenth or so viewing of the night..I would just want to beat the...stuffing out of it..trounce on it's round belly...rip the hanger shaped thing off of its head. I was just so furious...and just so very tired.  Thankfully...thankfully, we did get through those years with barely any tubby carnage.(I have a dear friend who got great joy in sending my kids various La La toys at that time...plastic, stuffed-ANIMATED...which from time to time I took my frustration out on-funny, that same friend wound up living with us for a while back then...after which she NEVER so much as whispered the word Teletubbies..hhmmmm..karma anyone?) I am secure in the knowledge that La La is haunting the sanctity of someone else's home..with her stupid bunnies and tubby toast. But I'm over it-really! At least now, 13 years later..now that Sam sleeps....Although...

  When we were going through this trial by Teletubbie, I used to frequently say to Sam.."When you are 16, I swear I am going to wake you up and tell you that "I'm lonely-I want company-I want to watch La La!"  Occasionally, I remind him of this promise...Especially on days when getting him to wake up before noon requires mad skills,,precision and thoughts of dynamite..

 "Sam...remember what I'm going to do when you're 16.."

  "Mama, come on-you're kidding...right?"

  "La La and the bunnies!"

  "Come on! You're kidding..look-you know I need my sleep."

  "We'll see when you're 16.." (I just walk away humming the theme song under my breath)

  He's got one year. Mwhahahahahahaha! 

  

   

Not a white horse but a yellow bus...

~"I wanted to be a bus driver when I was a kid. I look at bus driving through the eyes of a little boy. I see it as glamorous."~Jim Lehrer

For Miss K, Miss D, Mr.J, and all the others who have filled in from time to time....Thanks.

I don't think that there are many other kids who enjoy riding the school bus with as much passion and fervor as Oscar..The rest of my herd could take it or leave it..but Oscar? Oscar sees it as an important part-an essential part-a most NECESSARY part of his school day.  My girls on the other hand....beg me to pick them up from school in the afternoon. "It's too hot...it's too boring...it's too loooooooong!" (They are actually the second stop from school-and they ride for maybe 15 minutes total) On rare occasions I surprise them and pick them up.  But most times..well...practically all the time I insist they endure..I tell them "It builds character!".."teaches you important life lessons!".."puts hair on your chest!"  The last usually distracts them enough to stop asking-because really-I cherish my last few minutes of alone time every day.  (Some may say that this is selfish-but I call it self preservation.) Oscar on the other hand would be very upset if I picked him up..terribly upset..most displeased. The bus ride marks the end of his day- gives him a chance to gather his thoughts...switch off school..relax. When he gets home, he's happy..running off of the bus (not to greet me) so that he can get beat out his brother and sisters for the first turn on the computer.  It wasn't always this way.

  When we moved to our tiny town eight years ago, life for us was very different. I was enormously pregnant, Sam was starting first grade, Oscar pre-school and Lily was two.( I was exhausted.) I remember how scared I was on the first day of school.  My boys had never ridden on a school bus-let alone ridden anywhere without me.  Here I was letting them go off with a stranger! Of course, once they got on the bus-I immediately waddled to the car and drove to the school.  I needed to actually see that my boys had arrived.(first and last time I ever did that) They did...and all was fine...and continued to be fine....Until Oscar started school full time. That is when our bus driver became much more than a nice person who got my kids to school safely..much more..

 Oscar loved getting on the bus...it was getting off at home that could be a problem.Sometimes he simply...refused.  He did not want to-and not having very many words at the time, he told EVERYONE  in the only way that he could. My curly headed little boy would become a 49 pound tsunami of epic proportions...he screamed...and kicked and punched...he held on to the seat rails flailing and (did I mention) screaming.. He WAS NOT going anywhere...at least not without assistance..There I would be..trying to pry his hands off of the rails, my glasses flying..my shoes falling off. and he WOULD NOT budge...I'd get his hands loose and he would lock his legs around the bottom of another seat...I'd get his legs unlocked...and his hands would grab the seat. It was awful...although kind of funny in hindsight...I would be stuck...and then Miss K would jump in...calmly getting his hands loose-while I got his feet..and together we would carry him out of the bus and into my house.  I can't tell you how many times we did this-but it was enough so that in time, we worked together like a well oiled machine. Not once did she lose her temper, complain..admonish Oscar or me..not once.  Not only that-she would take the time afterwards to explain to the other kids(on the bus) that Oscar wasn't a bad kid. That he just had trouble communicating..that it was o.k....that he was o.k. I used to worry that she would call and tell me he was no longer welcome to ride...and call she did.  Only it was to make sure that we were o.k...and to say yet again that Oscar was a great kid. and that she loved having him on her bus. The next day, she would greet my boys in the morning, just as she always did, just as she always does to all the kids-with open arms.. 

  Those of us in the disability/autism community hear too many god awful tales of abusive bus drivers..of disabled children being abused or neglected. It is just horrible. Yes, we have to bring attention to these horrendous crimes...but I think it equally important to recognize the good guys too.  I am blessed to live in a tiny town where the bus drivers are magnificent. From Miss K-who has seen me at my best and (a whole lot of times) at my worst..dressed in many unusual outfits (hey-I have to get four kids up at 6-I'm lucky to even be dressed at all!) and has loved and accepted all of my kids-for who they are...to Miss D. who every kid in this town loves because she is just so openly kind and loving-and she throws a great Halloween party for EVERYONE...and Mr. J-who the kids think is cool because he sometimes plays the radio, and greets every kid by name, sends a get well message when they are sick...came and shoveled my front walk when I couldn't-AND  today, bought all of us (on a field trip) donuts for the ride home! And to the others that I don't know as well...but have filled in from time to time.  Thank you for loving our kids...and for keeping them safe. Thank you.

  Next week is "School Bus Safety week." If you are lucky like me and have a great bus driver-make sure to thank them.  The good guys deserve recognition too!  

   

     

The world outside our home...

~"Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away."~

 George Eliot

This post deals with mortality- just giving fair warning.

I was thinking about a conversations that I had ( years ago on another blog) on a post about stimming.  The blogger had written about her worry over peoples reaction to her sons stimming.  I said "My Oscar stims all the time..but he's so damn charming that it disarms people...maybe that will go towards changing how the world looks at these things.." Another person chimed in with "Sure, he's cute and charming NOW-but wait until he's an adult and people are scared of him..you can't change the world!!-It's pointless to try!..." I didn't bother responding to that....Although, I remember thinking "Wow-she's bitter..and not very nice". I was talking about my Oscar! My funny boy!  How could he ever NOT be charming and wonderful? How could anyone ever look at him-at his stimming and be scared?  He was four at the time.

In a few short months, Oscar will be thirteen.  Something that he likes to remind me about whenever he wants to DO something..like watch R rated movies or walk in to town by himself.  It is also something he conveniently forgets when I ask him to DO something like homework..or clean his room.  It has been nine years since I posted that comment..nine years and still that little snippet of blog conversation lives a full life in the back of my brain...occasionally worming its way to the bright lights and center stage of my thoughts.  Nine years later and I realize that the woman who I thought was bitter-was probably in reality-just really scared. I can recognize that now that (some of) my kids are on the verge of young adulthood-I can understand it too.

  We have tried to raise all of our kids to be confident in who they are. Teaching them that being kind and decent were the most important things. Stimming, eeeeing...pacing and muttering were just some of the things that made them-them. That being different was fine-great even..wonderful...spectacular!  So they thrive and they grow..because they believe me. Because I am their mother..their mom..their mama..they trust me.  Me. And on those nights when I recall that long ago conversation...when I allow myself a moment to be scared,,I wonder...have I raised them to live in how I think that the world should be instead of how the world  really is?  This is something I wrestle with.  Sometimes I feel guilty-like I am setting them up to be terribly disappointed..yet at other times I think that building their confidence, their sense of self will give them armor to get through anything.

  Anyone who has ever had the dubious pleasure of attending an IEP meeting with me has (more often than not) heard me say-quite clearly "I have to die some day.".(Mortality-the enemy of parents everywhere!) I don't say this for its shock value-I say it because it is the truth. Because if my kids don't get what they need now-how are they going to get by later-when I am no longer there?  Yes, I worry about not being there.

  I try very hard not to let my fears guide me. I admit, there is a part of me that wants to encourage them all to stay together at home(forever)...where it's "safe" and they can protect each other from the world as it is. But that wouldn't be fair-because it wouldn't be THEIR decision-THEIR choice..not really. It wouldn't be honest-because I have raised them to be who they are..regardless of how the world outside our home is. We have raised them with the fierce conviction that they have a rightful place in this world-a conviction that I believe with my entirety.  Encouraging them to hide who they are would be a contradiction. It would make what I have taught them a lie..acceptance with strings attached.  I can't do that....won't.

Way back in high school, a friend once said to me "If we you want to change how men view women in the world-raise your sons." Yet  another one of those snippets of conversation that has stayed with me-especially when I look out at the world that is outside of our home..Nine years later and Oscar is still flapping and eeeing...and he is still as charming as he was at four. Maybe I can't change the world..but I can raise my children...raise them...raise them up..and hope...and hope and hope that in some way..anyway..even if it is in a small way...the world will raise with them...

Crouching mother- hidden music teacher....

 

~"Without music to decorate it, time is just a bunch of boring production deadlines or dates by which bills must be paid.."~ Frank Zappa

We are a family that loves music.  Someone is always either singing along, listening to it...and on rare occasions playing it on an instrument.  It is part of the cacophany that makes up the sound track of our home.  Now, you might think that this passion for music would carry over to music class at school-that my kids would be excited over learning new songs and singing in concerts-that the music teacher would be one of their favorite people at school.   You would be wrong.

  I don't know what it is-but it seems that every elementary school music teacher we have dealt with, sucks the joy right out of music for my kids...sucks it dry..I know it sounds harsh..and I'm betting that many parents in our little school would disagree with me..And yes-I own my shame at hating to attend school concerts...at thinking xylophone solo's of Jingle Bells (that sound like funeral dirges) are one of Dante's unwritten circles of hell. I own that-I do! I watch the other parents at these concerts and they look so happy-joyful...rapturous even!...and all I can think .."Is it me? Or is everyone else on drugs?" Because really-hearing the same songs (and they do feel like the same songs) sung every year by a bunch of kids in a room where their are noise reduction tiles on the ceiling makes me want to....well, chewing tinfoil would be more fun.  But-I am an adult .I'm not going to spoil what is a special occasion for these kids.  I dutifully go to each performance-and praise my kids when they are done.(I praise other things as well).

  My boys had their "musical moments" in grade school- Oscar was actually pretty entertaining to watch in concert...but my girls?  My girls are struggling. This week-Lily auditioned for "concert choir" and did not get in.  Now, that is fine. She was prepared for it either way.  She knew that their was room for only a few-and was willing to take a chance.I was proud of her for trying...but you would THINK that our music teacher would use a little tact in how she told her!  "I only take the best-and their really weren't that many good singers this year." What-is she Simon Cowell?  Hey-thanks for crushing my ten year old girls spirit! Seriously-that would be like my saying to her- "Our small town would really love a world class music program-but we could only afford you." But I didn't. I thought about it though...I thought it real hard at her as she passed me in the hallway.  I'll admit, I may be a little bit touchy when it comes to music this year-and especially this particular teacher...but I have my reasons..


 My Zoe loves to sing-and there is nothing quite like hearing her belt out "Blowing in the Wind" along with Bob Dylan on her C.D. player...But at school?  At school my girl is quiet...sometimes even mute.  Noise, loud sounds-chaos really bother her. She doesn't always hear very well in noisy situations and it makes her anxious. Music class is torture for her. I can't tell you exactly how many "sick" days she took last year-that coincidentally happened to fall on days that she had music. Or how many times she came home( on music class days) and slept for 15 hours straight...or cried inconsolably for hours...So this year, we had a plan. She has a great team behind her, and  we made certain via her IEP that her disability was taken into consideration.  Except it wasn't.  No, my girl was coming home on music days and just falling apart..Only she wouldn't/couldn't/didn't tell me why. I come to find out that Zoe(as were all the kids) was being made to sing solo-in front of the class.  Only she couldn't-because as she told me "nothing would come out."  She was made to do this because the music teacher...forgot.  Forgot that my girl had a plan in place...forgot that this little one-who inwardly PANICS at being singled out-made to perform-speak yet alone sing in front of people!  she "forgot"...and what?  Am I supposed to say "Oh that's o.k.?"   I think not

  There is a real issue with disability and schools.  Especially for someone like my Zoe..  If she didn't have legs-no one would ask her to demonstrate dance steps. But, we aren't really "allowed" to discuss disability at school-and I think that we are doing a great disservice to people.  especially those people who like my Zoe, don't outwardly appear to be struggling. If it isn't seen-it's easily forgotten.  I was told we couldn't openly discuss disability at school because "Other parents aren't as open about it (disability) as you are."  But you know?  It isn't or shouldn't be about being open. Disability is not a sin-by not talking honestly and openly about it..makes it seem that way. How can we promote acceptance and inclusion...if we aren't accepting and inclusive?    How can I be sure that this doesn't happen to Zoe again?  

  In the meantime...Lily seems to have gotten over her disappointment over not making concert choir, and Zoe..well, she took a "personal day"..but-ASKED (via card) to be excused from music yesterday!! Way to go Zoe! So we will spend this weekend enjoying the music my family makes....there will be no xylophones.