Saturday, January 26, 2013

Flapping in public...

~"Come on now, who do you, who do you, think you are,
Oh bless your soul
Do you really think you're in control"~Gnarls Barkley

   Lily came to me the other day and said "Someone told Oscar to shut up on the bus." .."What?!..Who?! ..What was Oscar saying?" "I don't know..just some boy..Oscar was eeeeeing.." .."Well, what did Oscar say?".."He didn't say anything..some girl told that boy to leave him alone..she said "Don't you know that he is autistic?  they are like the most brilliant people in the world!""..*sigh* how do I respond to this?..I laughed.."Lil-you know that isn't really true..I mean-sure, there are going to be brilliant autistic people..but there are also going to be not brilliant autistic people...and everything in between." 

  This is one of those things that is hard for me..On one hand-I am thrilled that someone that we don't know stuck up for Oscar-but on the other? I really don't like this "all autistic people are brilliant" myth.  This is the first that any of my kids have heard it.  Not so for me. I can't tell you how many times that I have had said or have had written to me "You KNOW they can be brilliant!" As if this is some sort of consolation for having autistic children-as if I NEED consolation.  I find it incredibly insulting. Not just for me as a parent-but especially for my kids. As it gives the message that who they are is simply not enough.  

  All of my kids are unique individuals. Of course, being from the same family-they share commonalities.  They also have unique differences. Things about them that make them...well, them.( Of course, to me, they are all brilliant. I'm their mom!  I own my bias.) Take Oscar for example-he stims.  He flaps and eeeeee's..spins and shakes. He always has.  Sometimes I think it is because he doesn't always have words to explain what he is feeling. Language, either verbal or written is not easy for him. So we see stimming as a way of expressing what is going on in his life in that moment- one of Oscars ways of communicating. It is also NOT A CHOICE.  It is NOT something that he "decides" that he is going to do.  It    We let him.  That does not mean that we don't intervene from time to time. That we don't ask if everything is o.k. That we don't tell him that stimming loudly is not polite in certain circumstances. (i.e. when the teacher is speaking, or any other time when being quiet is appropriate) We have also been very up front and honest about how other people might view it. 

 Sometimes I worry if this is a mistake. That maybe we should stop him-redirect him. Because the world isn't kind. Because too many people judge on what they see instead of what they know. I worry because Oscar trusts me to tell him what is o.k. and what isn't. His confidence in himself-who he is-is formed out of that trust. That is a huge responsibility for me.  One that I do not take lightly.

  He trusts me. From the moment he gets up in the morning until he lays his head down at night, his day is filled with doing all the things that I have asked him to do.  He does them(mostly) without question. Simply because I asked-and he knows that I would not have him do anything that was improper or wrong. So maybe you can imagine the absolute horror-the stomach dropping sickness that I felt when I found out what he had been doing at school one afternoon. "Hey Oscar! How was your day?"  "Good."  "What did you do?" 
                                    "I shucked corn for the cafeteria people."
"What?  What do you mean? did you do something with one of your classes?" I thought that for sure it was some sort of hands on learning project-say for history or maybe even math.  "No.  it wasn't a class."  "So you shucked eat?  did you all learn how to cook it?" "No, we had to peel it to help the cafeteria people." Now remember, Oscar has difficulty with language. So I decided to send out an email. Here is the response (in part)

"I was presented with the opportunity to get the kids out of the classroom and in a controlled environment where we could practice social skills while simultaneously help out the cafeteria staff."

  I believe that had I been made of glass, I would have shattered-broken in  to a million different pieces. I think that I even stopped breathing for a moment.  My son-my beautiful boy was made to peel corn at school that day-to help the kitchen staff....and it was looked at as an "opportunity." Are you freaking kidding me? My boy, my child, the absolute light of my life and one of my reasons for being was delegated to menial labor as a form of education. Menial labor in a "controlled environment!" He isn't a prisoner!  He is a child, a almost young man who is looking to us (his parents, his educators) to show him, help him get by, to navigate this very confusing world. This is what we offered him. The worst part-the part that absolute cripples me with guilt-is that he did it because he trusts me.  But mostly-I hurt for him. Because he didn't know it was demeaning**.  

  I have four very wonderful children-three of whom are on the spectrum. I do my best to teach all of them how to advocate for themselves as best they can. I teach them that everyone-no matter what or how they may be different from them-is entitled to courtesy and respect. I teach them that they each are worthy of respect in their own right.  That they don't have to be brilliant in order to be accepted.  Nor do they have to assume some sort of "autistic" behavior in order to make people "aware." In other words, I wouldn't tell Sam to go out in public and flap (something he doesn't do) in order to bring attention to himself in the name of advocacy.  That would be absurd-and demeaning to his brother and anyone else that stims and flaps. It would make a mockery of how some people communicate. (Yes-I have seen this discussed on line.)

  I have great fears for my kids-especially my son Oscar. When I see how little our educational system values him(look at any states budget cuts, look at corn shucking) When I see how little our society values adults with disabilities (just look at any state budget cuts, look at our institutions and state run homes, listen to the politicians discussing "takers") When I see how organizations and people discuss disability and know that my son is disregarded because he can not speak (very well) for himself. You bet I'm scared.  The thing is, I do not know what to do. Except to teach my children to be strong in who they are. That who they are-brilliant or not, is good enough. Now if the rest of world would only follow suit...  


  **(of course I dealt with this-of course I explained to Oscar how this was wrong-and told him that he never had to do anything like this at school again.  But those conversations are not the point of this post)


Saturday, January 19, 2013

Raised by lions....

 ~"The clouds crack and growl like some great cat on the prowl
crying out I am, I am over and over again."~Ray Lamontagne

    The best thing that I ever heard stated about autism was from the doctor who diagnosed Oscar.  He said "If you have met one autistic person, you have met one autistic person." To me, this is just about the most important thing to remember-especially if you spend any time on-line. There are no experts-only opinions based on experience.  Experience that is personal to each individual.  Experience that deserves respect. We can not argue someones personal truth. It is certainly not our place to dissect or even disagree with it. It is what it is. Right?..RIGHT?? If only it were that easy.

 It's strange..  Especially when you see so many truths change over time. I'm not talking about personal growth-I'm talking total 180 degree change based on- who knows? ....One day, you will read an eloquent post from a popular blogger-maybe it's about the difficulty they had being raised by...I don't know... lions. Suddenly, it is like a flood gate has been opened. Instead of listening to and respecting that persons experience-it becomes a theme. A veritable lion free for all. "I was raised by lions too!" "I was raised by THREE lions!""I was raised by three lions AND an elephant!"..and finally.."I don't know if any of you know this or not-but, I AM a lion."And I think "Hey! I've known you for years! You never mentioned this-why now?"  Before you know it-the eloquent post that started it all..that lovely personal truth- is distorted...lost. Replaced by so many kings of the jungle....and really, who is going to question the king?  Certainly not me!  I was raised by Catholics. You know..all of this weirdness kind of reminds me of a room-mate I once had. Whenever she was dating someone outside of her ethnicity-she always claimed  "In a past life, I swear I was black or Irish..." or whatever she wasn't in this life. As if stating this gave her a sort of justification or approval- that she felt she somehow needed. Because-her personal truth wasn't enough. That's sad.

  Being that it is almost that time of year again- my inbox and Facebook wall are starting to become flooded with all things "awareness." Platitudes and posts...puzzle pieces and light bulbs. So much so that I'm really looking forward to May-when all of this winds down.  (*sigh* and it's only January..) That is a personal truth. Because, I don't think that I can become any more "aware" than I already am. Really-my awareness meter is overflowing. Nor do I need  platitudes about how wonderful my kids are..i.e. "As the wind swept through my hair and I looked down upon my sleeping son..a tear cascaded down my cheek..he has autism and I love him..." Wind in my hair?! For the first time in fourteen years I am actually remembering to brush my hair daily-and if a tear should be rolling down my cheek as I look upon my sleeping child-it is because they are asleep! ( I guess you could say that I have an attitude about platitudes..) Another personal truth? My kids are wonderful individuals with their own personalities, likes and dislikes. Most of them are on the spectrum. That doesn't make me more knowledgeable about autism.  I am not on the spectrum-that doesn't make me less knowledgeable. My children all continue to develop and grow. The kids on the spectrum have outgrown some of the criteria that put them there.  They are however still on the spectrum.  For me-my children being who they are with all they have done or have yet to do-is more than ample truth. They are who they are-and that is enough.  In fact it is just fine.

Friday, January 4, 2013

Letting go...

~"It kills you to see them grow up.  But I guess it would kill you quicker if they didn't. " ~Barbara Kingsolver

 Have you ever noticed that when you complain announce..mention that you could use time away from your kids-(it can be for any they have been really chatty for twelve hours straight..exceptionally darn chatty you would like to rip your ears off ) Some well meaning person always comes along to try and shame wistfully remind you about how fast they grow  "You will look back and miss these moments!"  "Enjoy them while you can-they grow up so fast!"  As if some how- by their reasoning, you shouldn't EVER want to be away from your kids.  Never mind that these well meaning people either forget what having young kids can be like-or they struggle with dementia. The point is-as a parent of any child-you are really never ever allowed to complain.  As if somehow your choice to have children takes away the right to feel anything other than maternal.  What a load of....poop. I am thrilled that my children are growing up! THRILLED!   I think that I can speak for many parents when I say..There are days when I wish everything would stay the same, days when I look forward to seeing what my kids are going to do in life...and days where I could really use a two week vacation ALONE. There are days that I look back on with great joy...and some with equal amounts of horror. Raising four kids has been an ongoing adventure..a never ending action packed roller coaster ride into the unknown. And although I wouldn't trade it for anything-there are times when two hours by myself would be much appreciated.

  I do have many fond memories-things that I like to look back on from time to time. It can be fun to reminisce..The thing of it is-with the kids that we have and the family that we are...we tend to spend more time thinking about the future. From the day they were born-we were always so focused on the next step-the next goal. Part of that is regular parenting-and part of that is parenting autistic kids. So for me-it isn't the growing up that makes me melancholy-it's the letting go. It is just so damn hard to let go.

  A little over two years ago I wrote this post about Sam's first school dance..Tonight, it is Oscars turn.  In fact, he is at the school dance as I write this post. I needed something to do with all the nervous energy that I have.  Oscar is....he is just so very wonderful...and interesting and funny! But, he's also different.  He stims and shakes...says odd things...laughs loudly to difficult to converse with. He is who he is...and to us-that is just fine. To the world?  You and I both know the answer to that.  Sometimes I worry that by letting him just be, we are setting him up for hurt and even sorrow. It burns my heart to have to think about these things-to think about him feeling them. He is exquisite-my golden boy..and I am afraid of the worlds tarnish.

  I don't long for the early days of babyhood with him.  But sometimes, I do wish that I could hold onto him just a little bit longer.  If only to protect him from all the crap in the world. But I can't....more importantly, I won't. Oscar is who he is-and he is confident in that knowledge. Now it is my turn to be confident that my boy...this almost young man, will be o.k. It is my turn to be confident in him...and as hard as it let go.

  On our way to drop the boys off tonight..Sammy said "Don't worry Mama-I'll show him the ropes" Just like a big brother should. My boys are very close-so I know that it will be o.k. Still though-I'll just sit here and worry for the next three he having a good time? Talking to friends? Enjoying himself?  Wanting to go home?...I hate not here I am waiting...and pacing....hearing the "JEOPARDY!" theme song in my head...

Three hours later...
 Apparently Oscar now has a girlfriend.
 Why do I do this to myself?
 I could really use a vacation ...alone.