Saturday, October 26, 2013

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 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 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! 

Saturday, October 19, 2013

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's too'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 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 least not without assistance..There I would be..trying to pry his hands off of the rails, my glasses 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 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!  



Saturday, October 12, 2013

The world outside our home...

 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 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 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...

Saturday, October 5, 2013

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 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 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.