The ironic life of a doubt..I mean SCOUT leader...

 ~"“Irony is the jesting behind hidden gravity”~" 

John Weiss

            When I was seven years old,  I did some time I was very briefly involved in Girls Scouts.  I don't really remember too much about the experience. I do know that we did a few crafts (which I hated) and that something may have occurred while we were making Christmas ornaments, with pins and glue...and perhaps I may have angrily catapulted..thrown  gently tossed an ornament or six across the room. I don't really want to remember. I just know that soon after, I was thrown out it was suggested that I no longer participate.That perhaps a group of quiet girls doing quiet girl things wasn't the place for me. That maybe I would be better off in prison sports. So, I think it is kind of ironic that this year I found myself being the co-leader to a pack of ...Girl Scouts. A person responsible for the education and well being of a group of girls- for two and a half hours every other week Not only did I volunteer-but I also paid for the privilege of doing so. Yes, I paid  money to do this.

  Do you ever have days where you say to yourself "What the hell was I thinking?"  Yeah well, I had many of those this year- mostly on alternating Wednesday nights between the hours of 5:30 and 7:00 p.m. Do you have any idea of what it is like to walk into a room where seven little girls are eagerly waiting for you-all shiny eyed- full of hope and expectation? Where they actually expect you not only to have an activity planned-but a cool and fun activity!  A cool and fun activity that will stretch their imaginations, make them think, get them excited about all that they can do in the world. It's terrifying.

  Let me start by saying that these are great kids. I really enjoy them all. This was the reason I was coerced volunteered in the first place. My co-leader and I  had so many good ideas-plans even!  We were going to give these girls a GREAT year! The problem is that- we (-my co-leader and I), are way better leaders in our heads than in the here and now world. Especially compared to the leaders from other towns. Some of those leaders actually wear uniforms! They have REAL Girl Scout vests-with pins and even badges-all  sewn on..by hand!   I showed up dressed. Sometimes my hair was brushed. I was a definite failure in Scout fashion..I couldn't sew a badge to save my life-much less wear one! Maybe I would have learned if I hadn't been asked to leave brownies.  Besides, I don't look good in green vests..Or really- anything polyester...But regardless of my lack of scout couture,  I think that our girls had a good year.  We had fun.  We played a lot..did a few field trips..we even made ornaments at Christmas!  Not to toot my own (and co-leaders) horn-but I'm proud to say that none of those ornaments wound up being thrown across the room. That works for me..Still..not wanting to tempt fate..and tired of being a "Scout fashion don't"-I resigned my leadership position for next fall...Those girls deserve a more involved leader-or at least one who knows how to sew..

  It has been a year of ironies for me. If any of you read last weeks post-you know that we had an IEP meeting today. On Wednesday, I was told by someone with some authority "I don't really have cause to believe she has any kind of autism." Inadvertently leading us to believe that she was going to lose her IEP. Which is something you just don't want to hear two days before her meeting-especially when you see how much she has and continues to- struggle. It's funny..When I look back three years or so-to when she was first diagnosed..I said those very same words. We had already gone through the diagnosis of two (very different from each other) boys. I had thought I had seen it all-knew it all. In fact, I was SO SURE that I was right-that it took the input of three speech therapists, three occupational therapists, two educational specialists and a neurologist to finally accept what I wasn't open to. As my dad used to say "A kick in the ass is a kick forward..I guess I got nine.  I am not going to go into the details of how I felt about this-or my idea that I had somehow let my daughter down. I will just say that-we accepted(finally) the diagnosis-and have done our best to get her everything that she needs. As a parent,(and especially this week) I have to say this.  We do not WANT our daughter to be autistic, have autism, be on the spectrum or whatever you want to call it.  Like it or not-SHE IS.  It is not our purpose, our dream or our mission in life to prove this to anyone. We are not so enamored with this neurological difference that we consider it a "must have" for any of our kids.  It is what it is. Whether or not one chooses to accept that is on them.  Not our daughter. I just needed to make that clear to anyone who.. you know...may be thinking that way.  Regardless, we had her meeting and we got her the services that she needs for the next three years. We are relieved. Especially as she is getting older and academics and socialization will become more entwined. Early intervention is EVERYTHING. I am so very thankful for everyone who rallied behind her today. My girl is going to get what she needs. Which is the whole point-isn't it?

  I had intended this post to be a light hearted piece about my adventures in Girl Scouts this year..I didn't mean for it to get so serious at the end. But there you go. Ironic isn't it?   Only two more scout meetings to go...

THAT family's mother..

~"Mothers are all slightly insane"~ J.D. Salinger

   

 I'm not a huge fan of Mothers day. It isn't that I don't like it-it's more that I don't really see the point of it..Sure, it's sweet that my kids make me a bunch of home made cards and things(that I HAVE to save or they would be very unhappy)..My birthday(49!) was a little over a week ago..and to tell the truth-that is more than enough celebrating of me . But it means something to my kids (although I suppose  that's the way it's meant to be)..-so, I go along with it.  They love me-and really, there isn't much that they wouldn't do for me-so what more could I want? Besides a place to store the forty million home made cards that they have made me over the years..

  When we first moved to this town (almost eight years ago) I was pregnant with Zoe- Lily was two, Oscar four and Sam was seven. My life was pretty much filled with diapers...PBS kids..and..diapers.  There wasn't any time to go out and be social...unless you count the supermarket-but who in their right mind is going to approach a woman with four very young kids clinging to various parts of a shopping cart singing or making train noises at the top of their lungs? (That was my trick to shopping with all of them-if we could pretend to be a train..or sing something we all knew-it kept us all focused-shopping was done quickly-and no one freaked out) I'm guessing that we looked pretty terrifying..with all our "choo-choo's and "Shake it up babies"..I think that for ANY parent who stays at home, the early years are lonely-only you are so busy just trying pick up Lego's(that magically reappear within moments) and clothes and bits of cheerios you don't realize it.. You don't realize how...well... weird you have become. That is, until you start making your way back into adult society.

  Oh it isn't like I was cutting peoples meat or wiping their faces.  It is more like I had forgotten how to have a regular conversation. Now in general, my brain has always been one to run in a million different directions at once. Verbally discussing politics while thinking about shoes and chickens..and whether or not vampires are real. Once you add kids to your life (whether in your head or outside the bathroom door-they are ALWAYS with you) all bets are off.(at least until they start getting older-and you spend more time in the world outside your home)  Maybe it is just me...but when I emerged from the padded room of stay at home parenting-I had such a hard time making non children related small talk.
  "Hi Kathleen, how are you?"
"Peanut butter!"
"..?????..."
"Sorry-I was thinking that I can't forget to pick up peanut butter..I'm good how are you?"..
 I have to say that most of the people I spoke to were very nice...understanding even- as I slowly worked my way back into adult society. I figured that since most of them were parents-they knew where I was coming from-understood even. So life went on..

  Last year, Zoe started school full time. (HOORAY!!) I was back. I finally had time to do some things on my own. What a difference!  I was able to get more involved in the world. Which is a wonderful thing.(except that I somehow wound up becoming a Girl Scout leader..how that happened I really don't know-but it deserves its own post) I started making real connections with people. I have even made a few lovely friends. These are all (except for scouts) good things..I'm out more..I talk a lot more..I'm involved.  From time to time I get questions about my kids..about autism and all things autism related.  I'm actually quite happy to discuss it. It's part of our lives-no big deal...Until one day..I had a parent tell me about how their child was suspected of being on the spectrum. Knowing their child I said "They remind me a lot of my Sam." In which the parent replied "Oh no..they aren't THAT bad."...Excuse me?  Unfortunately, my snappy come back side wasn't functioning that day-so I let it go..(Because really-comparing their child to my Sam- who is so incredibly loved by students and teachers.. cares deeply about his friends and the world.. is a talented artist and storyteller-AND is on the honor roll- WAS A COMPLIMENT)  But it made me realize something..Something I hadn't thought of.. to some  people-we are THAT family..and I am THAT mother. You know, the one people speak of in hushed and at times reverent tones.."wow, she does such a great job with her kids"  "She really has her hands full with those kids-I don't know how she does it." all the while thinking "I'm glad it's not me!"  Holy crap!

  I don't want to be THAT mother! No! Ewwwwwwwwww! I mean honestly..I'm just a regular mother.  Really. There are no "God thought you were extra special so he gave you those kids" yucky platitudes..nor is there any "God doesn't give you any more than you can handle" tripe. Believe me-there are days when I want to run away from home-just like any other parent. Days where my kids drive me up the wall..and days where I can not seem to get enough of them because they are that wonderful. We are a regular family No better and certainly no less than anyone else. We just sometimes do things a little differently. But, I guess to some people-different is scary.  Which is a shame..Because when I look at my kids..our family..I find my self  overwhelmed by how much I love them.  Sometimes I will reach over to hug them and my feet...they leave the ground.  THAT is the kind of mother that I am and THOSE are the children that I have. I really couldn't ask for more..well....maybe a place to put all of their millions of cards,,,chocolate would be nice too.

My Mothers day gifts this year.

                                             

Me, Myself and IEP's...

~"You better stop 

Look around 

Here it comes, here it comes, here it comes, here it comes 

Here comes your nine-teenth nervous breakdown. ~" Jagger/Richards

   

I really don't like being called an advocate. I think that regardless of who or how my kids are, I would do my best to get them whatever it was that they needed. Sure, having a bunch of kids on the spectrum has caused me to have to be more of a presence in their lives out of the house.  But regardless of diagnosis-I'm a mother-that's what I'm supposed to do. It's one of those unwritten rules that comes with the handbook-that I think every child should be born holding. Oh, if only each child arrived with a user guide-imagine how things could be.  "Honey?  Why won't our son sleep?"  "I don't know..check the book-look in the trouble shooting guide, I think it is on page twelve.." "It says here that he needs a weighted blanket." "I'll go get one now."  "Great!"   Or better yet-think of IEP meetings! "The team thinks that these services are no longer necessary for your son/daughter." Instead of getting angry, or spending lots of time and sometimes money hiring attorneys or advocates, you could simply say.."I'm sorry, but page 67 of his/her user manual states "All services are necessary and shall not be removed under penalty of law except by the consumer ."  It would be heaven.

  I hate IEP meetings. Sitting in a small room thick with the anxiety and sweat of all the IEP meetings that preceded yours.. listening to a slew of information you mostly already know..only in greater detail. Told to you by a bunch of people who have been stuck in that tiny room all day-and who probably want to get this over with more than you do. First, you hear all the pleasant adjectives describing your child.."He is, nice, friendly,wonderful,charming,funny...etc(I have had so many IEP's over the years that I think that Sam has gone through the adjective list at least twice-and Oscar isn't far behind)  Just once I would love to hear "He is a kick ass kid!" or "He freaking rocks!"....anything to just shake it up a bit. After the adjectives comes the list of deficits-kind of like Festivus for the educational set. Although this year-I was pleasantly surprised as they listed their accomplishments instead. After that you get to hear what they think should be done, how they are going to do it and in what amount of time it will be done in.That's when the real party really gets started. This is where you get to say what you think..and sometimes it works out..sadly, lots of the time you have to...exchange strong words..sometimes loudly...If you've done it-you know the drill. For any of you about to go through one-I wish you the all the best.  We were lucky (so far) this year,  Both of my boys meetings went well.  We'll see in the coming year how closely their plans will be followed-but THAT is a whole other story.

  So, I have two meetings down and one to go. Unfortunately, the one that is left, is the one I have dreaded the most.  This year (as is done every three years here) Zoe is being re-evaluated.  Fine-if that is what they have to do-so be it. The thing of it is-my little girl always seems to have to prove that she has issues. From her very first IEP meeting on. Her autism is not obvious.Social situations confound her at times.  She is very quiet(at school)-she hates drawing attention to herself. In fact, she will do OR SAY anything that she can to take attention off of her. Even if it means she has to lie or fake it in order to do so. For instance, if she tells me she is having an issue (and it takes a lot for her to vocalize this) I will do what any parent would-I'll call the school and let them know. We praise her for telling us  and promise that we will fix it. Only to be told(by the person we spoke to) later "No she really doesn't have an issue with that-I spoke to her and told her that it was probably really just this and she agreed with me. So we aren't going to change anything..because I was the same way as a child and it worked out for me. She's just going through what's "normal" for a girl her age."  What they don't seem to get is what this does to her-how she internalizes this.  Instead of just accepting what she tried to say-they put their own reasoning in- which pressures her (who is so very unsure of herself) into agreeing with them. Something also tells me that when they were a child dealing with their issues-their "normal" didn't encompass hours long screaming/crying jags, and hitting themselves, banging their heads on the wall..or curling up in a ball and sleeping for fifteen hours straight. But, they don't see that part-so therefore it doesn't exist. 

 We had another school issue last week. We tried diligently to figure out just why she was doing what she was doing.. I said-"How can we help you if you don't let us know what is going on?" When she finally did tell us, she begged us not to try and fix it "No! you always make it worse."  ..*sigh* so much for advocacy or parenting..I feel as though I failed my girl this year.  

  So, her IEP is next Friday-and I don't believe that I will be able to relax until it is over. I do have to say-that she has had some wonderful people around her this year as well. People who have really tried to make things as easy as possible for her. My biggest fear is that there will be an attempt to take away this support. All because she seems "so normal." Who knows-maybe I will be delightfully surprised.  Either way-I refuse to fail her this time.  Oh, if only I had a damn owners manual...

Sex RE-education....

~"Always end the name of your child with a vowel, so that when you yell- the name will carry."~ Bill Cosby

           

 I don't know why, but I'm always surprised by how different my kids can be from each other.  I mean, they live in the same house, have the same rules...the same parents.  So why does it throw me off when they react to the same situations so differently from one another?  Before my mom died-she had said something similar to me about my siblings.  There were six of us-and she said "I am amazed at how very different you are from each other." At the time, I thought that since we were all adults-it shouldn't be so shocking. We were grown up-we had all made varied choices and decisions that set us apart from each other. Of course we would be different.  But now, looking at my own children, I think I know what she really meant.

I think that it is normal for every parent to look back on their own childhood when raising kids. To take the successes and failures of your own parents and apply it to how you raise your children.It's finding the balance that can be hard. I struggle with it constantly. It isn't that my childhood was terrible. It wasn't. It is more that my mother was very proper-exceedingly so. In other words-none of us existed from the chin down or ankles up. It was "Sans Genitalia" house. Puberty and all the adventure that it brings was handled with a booklet-from the church. Which basically said everything that you were thinking, feeling or possibly doing or thinking about doing was WRONG. Sex was for procreation! NOT recreation!  Behave as if the blessed mother were in the room with you-always...all others WILL go to hell-with the possibility of blindness and hairy palms.  Although, by the time I reached puberty-things had changed.  Sex ed. was taught in school..which meant that my mother didn't have to involve herself(or her pamphlets) at all. Which I think greatly relieved her-because,If she didn't have to know-then it didn't exist. This was not easy for me.  I had questions..concerns...worries. But I knew that asking my mom would be a mistake. I think that I took years off of my mothers life when I just happened to(unthinkingly) say "Fallopian tube" out loud one day.  (go ahead say it...it kind of rolls off of your tongue..Faaaaalllllllooooopian..see?)  She turned and said "WHAT did you SAY?" in that way that mothers have when there child has said or done something entirely improper. So, I responded as any child whose well being felt threatened would. "Nothing!"I said quickly...and that was the extent of education at home.

  I have tried to do things differently with my kids. I have to admit-it is really hard. I was raised to be a prude..so, discussing these things sometimes kills me. It has gotten easier over time and with each child. For instance, I hardly ever snicker when I say the words penis or vagina any more.(although they aren't as fun as Fallopian tube) I try and be as honest, straight forward and open as possible. Which is no mean feat-especially when you are standing in front of the feminine hygiene display in the store-and your four year old wonders in that voice four year olds always seem to have in public "PADS FOR LADIES?"  "WHERE DO THEY PUT THEM?" or "WHY ARE YOU GETTING TAM POONS? CAN I HAVE SOME?"(I have learned to just keep walking in those situations-they'll catch up...and hopefully be distracted by something else. I always plan to discuss these things later at home-but then of course- they aren't interested)  But I have persevered. Right now, I have a fourteen year old and a twelve year old going through the joys of puberty. One has asked me many many interesting questions...and one I have had to actually sit down and make sure of what he knew. They are so very different from each other..and it makes me laugh.  Sam, is very private about things.. sensitive even. ( He likes being the oldest because it lets him say things to his brother and sisters like "You'll understand when you are older.") Oscar on the other hand is very open and at times rather bawdy...especially when he knows it will make you uncomfortable.
   
  "Mama!  Tell Oscar to get off of me!"  (me- not really paying attention)"Oscar get off of Sam."...."Mama! Tell him to stop it!" ..(still not really paying attention) "Oscar-leave Sam alone.".."OSCAR! Get off of me!..MAMA make him stop!"  (got my attention now) "What is he doing?" "He keeps trying to kiss me and hold my hand!" "Oscar-leave Sam alone." "But I LOOOOOVE him!" "Oscar get off of me!"  "Oscar quit it-leave your brother alone." "But I'm just practicing."..."Get off me Oscar".."But I'm practicing for when we get married!" "WE ARE NOT GETTING MARRIED!".."BUT I LOOOOOVE YOU SAM! "Oscar, come on-we are brothers..brothers don't get married"..."LET. ME.  KISS YOU!"... "Mama!!!!" "But I want to kiss him!"...At this point, I'm laughing too hard to do much of anything."Sam-he's just messing with you-Oscar quit bugging your brother"..eventually Sam saw the humor in it-and Oscar left him alone.   Oh how I wish my mom were around for it though...She would have loved my kids..although I think that Oscar would have aged her..on purpose.

  I think that all kids are born with personalities intact. Of course their upbringing is going to play a role in who they become as adults. But I think that basically they are who they are and there is not a whole lot that you can do to change that. (at least in a happy household) My kids are good people and I am enjoying(mostly) watching them grow up..raising them up. Although I still struggle with reconciling bits of my childhood-especially in the choices I make in teaching them. Everyday is an adventure...mostly good.

  My nine year old has been coming home with "interesting" questions lately. She's been hearing "things" on the playground at school. Since I have always told my kids to "ask me anything-I'll always tell you the truth"..she has had no qualms whatsoever in coming to me. *sigh* Sometimes I wish I could just give her a pamphlet.

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...