Need and want in the land of awareness..

~"You can't teach an old dogma new tricks"~ Dorothy Parker

We are a regular family...Like any family, we have good times and not so good..times when we are all together and times when the ups and downs of living our lives scatter us in a million different directions.  But, even when separated, we are always connected.  I adore this family of mine.

  As a mother, I see and raise ALL of my children equally. They ALL have the same rules-the same expectations set upon them. "Do your best-and most importantly-be who you are." I have four kids.  Each with their own very different and unique personalities-four wonderful kids..not three kids on the spectrum and one neuro-typical child..nor three "auties" and one "normie"..or any other "ie" ending cutesy kind of word.(what is it with that anyway?) Four kids-four human beings that we are doing our best to grow into adults. Labels aren't really necessary to us-unless of course we need services. Then they are of the utmost importance. Autism, other than as an explanation(to my kids) as to why things are sometimes more difficult or different doesn't really mean anything to my children. They are kids, they are part of a family and they are loved beyond words. This is what they know. Sometimes I wonder(when I look at the world) if I have made a mistake in guiding them to think this way.

  A few weeks ago, I had an person tell me that I was the best advocate that they had ever met in all their years of working in special ed. I tried to dismiss this..in fact it made me really uncomfortable. Believe me, I am not "the best"..not even close. There are too many days when I know I could be doing more...could be doing better. Those days when I just want to hang out drinking coffee..(and I do) Or, when I just don't feel like making a call..or showing up at school. (so I don't) Days where I would rather read a book than discuss anything to do with autism (so I go to the library)  No, I see myself as a regular parent. Doing the things(mostly) that a parent is SUPPOSED to do. I don't need a title-and I don't need (or want) praise.  What I would like is for my kids to get all that they need without having to intervene. I do not think that this is too much to ask.

  No, if anyone deserves accolades it is my kids. They are caught in a system-both in the real world and on line that is constantly trying to box them in. My children are more than their diagnosis. Some of them struggle more than the others. Not all of my kids may be able to live fully independent lives (as adults.) That does not make them less valuable (as people) then the kids who will be able to. Nor does it make me a failure as a parent-someone from whom they need to be "liberated" from. That is just the way it is.

 One of my kids wants to be a teacher.  Unfortunately, his lack of pragmatic language, and really, just the way he learns has caused him to be dismissed by many educators(there have been some wonderful ones-but not enough), administrators-and whole bunch of other professions ending in "ors". He simply doesn't fit into the system. So it is easier to just ignore him. To pass him on to yet another system-only to be ignored there as well. *sigh* And another one bites the dust...

 Autism awareness month is almost upon us-and I sit here thinking about how unaware people really are. Soon my Facebook wall will be flooded with all sorts of "My autistic kids are great!" all my kids are great-so you're preaching to the choir ..Or the activist type of "I don't stim-but when I go out with my friends, we flap in public to bring attention to stimming!" Are you kidding me?  That isn't activism-it's theater. My son owns his flappiness-thank you very much. It is his and it is real. I wish that people would stop co-opting his behaviors to try and make a point. How can I teach him that it is important that he "be who he is"-when there are people are pretending to be who they are not?   I wish we would instead concentrate on what is really needed. Services, supports,education and inclusion for EVERYONE on the spectrum-regardless of where they are on that spectrum.

Autism isn't a month it is lifetime. It isn't one set way-it is many ways. It isn't a light bulb or a tee shirt. Autism is all different shapes and sizes and colors and religions. It is different abilities and disabilities. But the most important thing autism is...is people. All different kinds of people. We need to respect that-to acknowledge it-to accept it. I fear that nothing is going to change until we do.

So, now that April is almost upon us and we are inundated with all things "awareness".. I think that I will just continue doing what I have always done. That is, to raise my children to do their best-and more importantly-to be who they are. That is more than enough awareness for all of us..

Blogging at The Autism Channel today..

Kim and I wrote our first joint blog lady post over at The Autism Channel blog today.  It discusses some very important issues in the autism community.  I hope that you go on over and give it a look.  Thanks.

cold feet...warm internet..

~"The Internet is the most important single development in the history of human communication since the invention of call waiting. ~"
Dave Barry

 Well...we have had ourselves a bit of a storm...

I don't think that we'll be going anywhere anytime soon...

Unfortunately, some of our pipes have frozen...leaving our house kind of cold. There is nothing like being woken up to "Mama! Papa!  Come quick!  The playroom is full of snow!" Yes, one of the outside doors had blown open during the night-making one of our rooms a "winter wonder what the hell I'm going to do now"-wonderland! I wish that I had taken a picture..but desperate times-without having had coffee first..left me thinking about clearing the room and sealing the door first. As you can see by the picture(this is after clean up)  That the deck behind the door is virtually empty of snow.  That is because it was ALL inside the house...*sigh*

You might think that this would upset the kids. That they might complain about not being able to use the playroom...That they would be unhappy because of the cold..

But, it doesn't seem to bother them in the least. In my last post, I wrote about how "interesting" it was to be with out power for many hours.  I thought for sure that the lack of heat would cause us to have another fun filled day. A day spent waiting for the oil burner guy to come..a day filled with "When do you think he will get here?"..and "Boy-I sure wish the heat was fixed.."  But no..

As long as we have the internet, and television...my kids are happy, content even!  I myself am dressed in-two pairs of long johns, striped thermal pants, a thermal shirt, a sweat shirt, a pair of boots and Omar's robe.  Oh-and I can't forget the jaunty orange cap on my head! Sitting here, typing with cold fingers...waiting for the repair man to come...thinking.."Boy I wish he would get here soon"...and "I sure wish that the heat were fixed."...and hoping really HOPING that I don't have to step foot out of my house in this outfit...

Fashionably Unhinged...

~"While the angels were singing his praises in a blaze of glory-Mary stays behind and starts cleaning up the place"~ Patty Griffin

Two weeks ago, I posted this as my Facebook update-

 was quite the trendsetter this morning. Running through the snow and down the road in my trendy pajamas, red slippers and leopard print coat chasing down my senile dog-who thought it was a most excellent idea to walk into oncoming traffic. Women of Richmond -I'm sorry for setting the fashion bar so high..

Yes, it was a kind of funny incident (in hind-sight)-you know, one of those things you can look back on-because they are rare and unexpected..or so I thought..until a few weeks later when I found myself running down my driveway, in another "interesting" outfit, hair askew, rocking a chicken in my arms while singing the theme song to "Caillou"..in an absolute panic....(sigh) Let me start at the beginning....

  Omar had his yearly General manager summit meeting this week.  That means that he leaves home for a few days and flies to somewhere like Miami, San Francisco, The Bahamas, Mexico..or this year Hollywood. While I stay home in cold cold Maine with the kids. Now, I don't fault him for this..I don't hold it against him.  He does spend most of the time in meetings..it is a part of his job.  A job that allows me to stay home.I understand-and yet?.. I will admit-I am a little jealous. I wouldn't mind taking a business trip once a year...actually, I wouldn't mind just sitting in a parking lot listening to music by myself for ten minutes. But that is neither here or there..The point is-he went on his business trip this week-and whenever he goes on one of these trips-things fall apart at home.   Something either breaks, or someone gets sick..there is always something.


  When he took his first trip seven years ago...within an hour of his leaving-an hour...Oscar threw up all over the new furniture, Sammy was so grossed out that he joined him..and while I was trying to sort them out, Lily knocked a whole tower of cans over-right onto her head-cutting her face..in ran the dogs (probably to help with the clean up-ewww) and  they were(visibly!) covered in fleas...The next time he went away, the furnace broke down-it was 8 degrees outside..the year after that, the pipes froze..and so on.   So, you could say that I have learned (from experience) over the years to prepare for many emergencies.   I make sure we are stocked with food, Advil, cold medicine-cleaning supplies!...that we have a full tank of oil..a full tank of gas..dog food, cat food-all the bills are paid. I try to plan for every contingency!

  Omar left early Wednesday morning. School wound up being delayed for two hours that day-as there was black ice on the roads. Even though the news station (that I signed up with in order to be notified of these things) did not alert me until two hours after the fact-a friend on Facebook posted the information-so crisis averted. the rest of the day was rainy and snowy-but that was o.k.-I had done all the shopping..there was nothing that we needed.. Life was good.  And then..and then it was Thursday..

  The morning started with Lily complaining of a stomach ache. I decided to let her stay home.  I didn't even bother to question her miraculous recovery the moment the bus pulled away from our house. Sometimes we all need a personal day-I let her have hers.  I thought that we would just have a nice quiet day to ourselves. Quiet being the operative word.  Lily, can be a chatty girl..sometimes a very chatty girl...sometimes she just doesn't stop talking-ever.  So, as I busied myself doing all the things that needed doing-I was a accompanied by a non-stop verbal assault. "mama-why are you doing that?" "Why aren't you doing this?" When will you do the other thing?" Why is this that and not that?" "Why don't you do this or that and then that?""Why Mama?..Why? Why? Why?" As I was gritting my teeth..trying to at least get a work out in..(which is really hard with a nine year old questioning everything you are trying to do.." Boom!  The power went out. "Hey Mama?..Mama!...the power went out!" "REALLY?"...sigh..I opened the door to check if it was out in the neighborhood-OR just our house.  (past experience has taught me not to be surprised if it were the latter) It was the whole neighborhood. So, I went back in-forgetting to lock the door behind me(it pops open if you don't lock it). I figured that it was a windy day-we have lost power before on windy days-they would get it back on in no time...Then, the phone rang. Power was out in the entire town-including the school.  As it looked like it was not going to be restored any time soon- they were closing school and sending the kids home straight away.  Now I had a problem.  My kids LIVE for computer and television time. Especially Oscar. What could I do to make this easy for them? As I was pondering that, I noticed the door had popped open...and my Jack Russel Terrier had gone AWOL...and my chickens were yelling!!  So-out the door I RAN...(remember, I had been working out) dressed in
 stretched out and way too short yoga pants,
 boots
 an overly large tee shirt (complete with bleach stains and a neck hole large enough to show my
 sports bra )
 and my hair springing out in all directions.
 (Once again setting the fashion bar high.)

    I found my dog-with the backside of Dorothy in his mouth..Springing into action-I commanded him to drop her..but, as he was "in the moment" it didn't work..so I punched him in the head...he dropped my girl..and ran back into the house(with a mouth full of feathers)...my heart was pounding-there she was just lying there..I had thought she had gone to the big rotisserie in the sky...but she was just in shock. I scooped her up and started rocking her..and singing the first thing that came into my head.. You see, Bandit (the dog) had gotten one of my girls(Sophia) last summer...she died more of shock than injury..I was NOT going to let that happen again! I also had to get outside to meet the bus..So please feel free to imagine how I looked...pacing the driveway, rocking my chicken..and hyperventilating/humming/singing the theme song to Caillou. Was I setting a new fashion trend?  Or am I becoming the crazy chicken lady of the town?  Only time will tell...

  Dorothy survived the incident-she lived to lay another day. Meanwhile I spent the next six and a half hours with some very restless children. Who felt the need to inform me (every 3.5 seconds) "Boy, I really wish the power would go on."..and as I searched in vain for all of our flashlights-we have at least ten-I found one-with weak batteries (of course)..I thought to myself "I really hate these G.M. summits.." and as the night wore on...and my kids started composing songs in tribute to the blackout..(O black out, O black out..think O Tannenbaum..) I thought "Omar is never leaving home again..When the lights came back on, and I saw how I looked (add a few feathers in my hair) I seriously started considering going with him next year when spouses are included. I am hesitant to leave the kids, the dogs, the cats and my chicken girls for three days...But then again-it may be safer for all of us.

This was what I posted on Facebook Friday morning..

I adore my kids...but after spending many many hours with them yesterday-without electricity or heat...I was very happy to see them all get on the bus this morning..giddy even!

I think that I need a vacation....and perhaps a new wardrobe...
 

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 just...is.    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 corn...to 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 boy...an 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)

 

 

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.

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 reason..like.. they have been really chatty for twelve hours straight..exceptionally chatty...so 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 himself..is 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 is...to 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 hours...is he having a good time? Talking to friends? Enjoying himself?  Wanting to go home?...I hate not knowing....so 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.