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.      

Maybe it takes a small town....

~"To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment."~

Ralph Waldo Emerson

I live in a very small town(Population in 2010: 1,760) Very small-considering that I grew up near and later lived in N.Y.C.  Funny thing is-I didn't really notice how small it was until long after we had lived here. When we moved here seven years ago, we had just started figuring out what Sam needed (services wise) Oscar(who had barely just started sleeping-for the first time in 4 years) had just been formally diagnosed, Lily was two (need I say more) and I was pregnant with Zoe.  I guess I could say that our plate was overflowing. So, we did what any other family would do...we got two more dogs...and a cat.

  Our lives were pretty full..There we were trying to catch up from years of sleep deprivation...renovating our crumbly home..we had doctors appointments..school meetings..giving birth!..and a lot of...dogs..just...so many dogs.....The life in front of me...surrounding me..sometimes overwhelming me...was so tremendously tremendous  that I didn't have time to look past the walls of my house. Forget about  the internet..I might check my email every few days..but I had no idea what Facebook was..I even had to look up the definition of "blog" when I first heard it .I admit it.  I was naive-an internet virgin..

  Little did I know how one innocent foray..a tiny peek if you will, into the world of advertising would sink it's talons so deeply into my innocent internet free brain..Oh it started innocently enough...I'd check my email...and my eye would happen to glance over to the side bar where "See how this mom lost thirty pounds of belly fat using one simple trick!" ..would be prominently displayed. I admit it...I had to know!  HAD TOO. From that one click..that one innocent instance of curiosity...I was sucked into the vortex of online social networking.  There were comments which led to blogs  which led to forums  and groups and tweets! I was enthralled! I made friends in the autism community...My small insulated view of four walls had exploded into a world of advocacy and awareness. I met so many different people-a few of them were autistic adults..something I had never thought about because I was mired in the world of raising my kids.( They actually do grow up-a thought that I must admit  has kept me going on more than one occasion. More than two even..).

  For the first time in a long time-I felt a part of something-and it was lovely. I had people to talk to..discuss or even argue things with-it didn't matter...it was a lifeline for me.  For that I am thankful.  It was because of these discussions and arguments (and a little bit of Oprah) that I started blogging. I wanted a place to tell our story-a place that any parent regardless of whether or not their child was on the spectrum could come and maybe see that we really aren't all that different.  A parent is a parent..right? I mean, the words Mother and Father and Parent don't need any embellishments.  They are powerful enough-strong enough-honorable enough to stand on their own.  Aren't they?  At least I have always (and still do) thought so.The same goes for the word "family"...and "child"... 

  A little over a year ago-I decided to step away from regularly blogging. I went from posting once a week to about once a month.  One of my reasons was that my kids are indeed growing up.  They are doing more..venturing.. separating from me and each other. I know-it is what they are supposed to do...doesn't mean it's easy to watch. It's actually more bittersweet than anything else. But-I wanted to savor this time with them while I can.  They really do grow up too fast. (most days) 

  This past year we got involved outside of our house.  We had basketball and girl scouts..play dates..and field trips. If I want my kids to be part of the world-I have to put them in it. Regardless of whether or not I feel like getting dressed and driving. I realized that I had to stop doing everything for them..so it was time to start prodding them to do more things for themselves. It hasn't all been easy.  In some ways they thrive on having the extra responsibility...but in others? 
Just the other day as I was insisting...demanding...putting my foot down...suggesting they all pitch in to clean up the house I was met with the usual.."But I'm watching a show...I'm on the computer...cleaning is boring!" Oscar, said nothing...he just quietly went upstairs-I figured it was to clean his room..Oh-I was so proud of him!...To go without complaining!!...I thought "Wow-he's really growing up-taking responsibility..seeing that getting the job done straight away is easier than complaining.." I got the other kids moving and went upstairs to compliment him on his wonderful work ethic...only.....he wasn't in his room..he wasn't in my room or his sisters room...Oscar, it seems-had disappeared!!  Where was he?  Where was my hard working industrious boy?!  And then... I heard a noise..faintly at first (the vacuum was on)..but steadily growing in volume as I approached the bathroom....  Coming loud and clear from the other side of the  door came a tune...so plaintive..and heartfelt..So thoroughly mournful..I thought..the angels must be weeping... But no...it was Oscar..lamenting on the horrific burden and subsequent pain that any eleven year old feels when asked to clean their room..
  
 "Woooork sucks...woooork sucks
    I hate work...work is lame
   I only like work when other people do it
   because then I don't have tooooo
   because wooooork sucks.." 

Oh the humanity!  The only things missing were a harmonica and guitar.. and he'd have  had a Blues rendition worthy of Muddy Waters  ...

"Oscar!  WHAT are you doing?!"
"Hiding."
"Hiding is not cleaning."
"I don't want to clean"
"Well-neither do I...but it needs to be done-and if it doesn't get done, NO ONE will watch t.v. or play on the computer..and I won't let anyone else do your work for you."
"o.k."

So-you can see that I didn't have much time for writing..the kids are growing, they are doing more things-taking more responsibility..Add the fact that I may have a burgeoning blues career to manage..and you can see that the internet isn't one of my top places to be.. I also stepped away because I didn't like what I was seeing on the internet. There was way too much vitriol..and anger- one upmanship and top dogging. It stopped being about autism per say...and more about who was the expert, who was right-who was really raising awareness...and sadly-who suffered more. I came to realize that this wasn't the autism my kids experienced-that our family experienced.. nor was it how I experienced parenting.  I am not an "autism parent" or an "autism mom"..I don't raise autism-I raise kids..some of whom are on the spectrum.   Add the suggestions for joining "Senior People Meet" and friending Regis Philbin on Facebook, and I had had enough.  More than enough..I needed to find my community. 

(Please note-that there are still many wonderful blogs and websites online-I was just getting mired in the not so nice ones)

  So, I stepped out of the online world...out from behind the walls of my house..and started becoming more involved in the real world around me. What I found was really kind of nice.  It  seems that while I was busily typing away on the internet talking about awareness-my kids, just by being the wonderful people that they are-were busy raising it. Autism-to them, is an explanation.. Other than that-it really doesn't matter-it isn't something they talk much about.  In other words-they could care less. Because they are just too busy living their lives-being kids. Now, I am not in any way trying to say that it doesn't affect them..It most certainly does. Some of my kids more than others. Communication...social interaction...these hurdles can be really challenging at times..But the thing of it is..no matter what their difficulty...the majority of people in this small town of ours..have learned to understand it...accept it...and following my kids lead-take it in stride. My kids have been welcomed just about everywhere-because they are good people...and they are fun to be around.  

  We have traveled very far in the seven years that we have lived here. Our house is still a bit crumbly..there are still too many dogs...add the three cats and two chickens (sadly one was lost  to my least favorite dog) and you can see that our lives have remained pretty full to overwhelming...but, seven years later-(and not to late) I also realize( all credit to my kids) that we are surrounded by roughly 1,760  aware, accepting and inclusive neighbors.  If four kids can can raise awareness in a small town-imagine what they and a small town can do in the world.

  So, it has been almost four years since I started blogging. I still have not learned the trick to losing thirty pounds of belly fat- nor the secret to erasing wrinkles that has dermatologists everywhere angry..I have not friended Regis Philbin..and I am definitely not joining "Senior People meet".  I figure though that I'll keep on blogging at least sporadically until I run out of things to say.  We are also thinking about getting a goat. I'll let you know how that turns out.