Saturday, May 25, 2013

Sans pajamas...

~"Always kiss your children goodnight, even if they're already asleep."~ H. Jackson Brown Jr.

Last week, Sam had a field trip with his class. He's gone on so many of them before so normally it wouldn't have been a big deal...except this time..this time it was a sleep away trip.  He would be away from home for four whole nights. Four whole nights away from Although I didn't let him know-(with the exception of telling him that we were going to miss him (40 million times)) ..this was giving me ginormous  anxiety. Sam has never slept away from us before. Never gone on a sleep over..never even asked to. So this was a, a HUGE hairy deal!  Our Sam has come so very far in the past few years- has made really big strides.  This is the kid who used to freak out over change or food or really anything that strayed from his normal routine..and now-he was going away to leadership camp-with no idea of what to expect-AND he was excited about it.  When the hell did this happen?  More importantly-where was I when it did? It isn't like I have gone anywhere. I mean I basically live between the kitchen and the laundry room. Have I been so caught up in the excitement of folding laundry or heating frozen pizza that I have failed to see all of this growth? It has certainly been a month of surprises.

  We had Sam's IEP meeting a few days before his trip. Now, I look upon IEP meetings as one of Dante's unwritten about circles of hell with all the excitement of medieval dentistry thrown in..So, as Sam is transitioning to (eek!) high school next year-I demanded invited him to attend.(  he was more than happy to -as it got him out of class). It was time to let him in on the fun. The meeting went pretty easily..we set up his services for next year..picked his courses...And then his adviser stopped the meeting..he had a few words that he wanted to say..words like "In thirty years of teaching Sam was one of the students that impacted him the most..he spoke of Sam's kindness and openness...his deep empathy for people and his compassion..of how loved he was by students and staff and of how his presence would be sorely missed.." All the things that we (his family) already knew..all the things that we are told autistic people CAN'T have (yeah THOSE things)...I just sat there and soaked it all in.  That it was said at an IEP meeting- icing on the cake.  Afterwards, as I was saying goodbye to Sam "Hey-that was some huge compliment from Mr. C."  "Uh huh."  "Holy crap Sam!  People don't get compliments like that every day-be proud of yourself!" "O.k....can I have popcorn when I get home?"...*sigh* He is fourteen..

 As we stood with his packed bags waiting for the bus last Monday, I once again -(in between asking him if he was sure he had everything)-told him how much I was going to miss him. As the bus pulled up-I leaned in to give him a big hug...only to grab air. With not so much a a backward glance, I got a "see ya"...and off he went to the bus. "See ya???" That's it?  No hug?  I was bereft!  My boy, leaving home for the first time EVER didn't even bother to give me a hug? My poor heart! I of course ran and (indignantly) texted this to Omar-who replied-"He's fourteen-there were people there." Pouting-I went to do what I always do under times of duress-laundry.  Where I noticed-he had forgotten his pajama's..".NOOOOOOOOOOOOO!" I cried..I may have even gnashed my teeth.  "Not his pajama's!!!" *sob* "He can't be without his pajama's!"

  Sam loves his pajamas. He always has.  When he was three years old until he was about six-he wore the same exact pair of pajamas every single night.  It did not matter that they became six sizes to small.  It did not matter that they were full of holes (that his wonderful Aunt Ursula lovingly tried to sew up for him).IT. DID. NOT. MATTER. He was going to wear them-and god help anyone who tried to take them away!  Only when they became more hole than pajama did he kicking and screaming begrudgingly let them go..Only then did he allow me to get him a new pair...that he in turn wore out.  Yes, he has gotten better about these things...much better...and perhaps that particular memory is indelibly etched into my eardrums brain..Perhaps my anxiety got a tad out of control...but I was panicking! All I could think about was my poor boy-wandering in the wilderness without his pajama's. Cold, sad....and hugless.  Of course I knew not to intervene.  He is fourteen.  That's all he needs-a mother showing up at camp carrying his pajama's!  I figured that if he needed me-he would call. So for the next four days I kept the phone by my side, and did a whole lot of laundry. I fluffed-I folded-I even used dryer sheets.  There was nothing washable that went unwashed..

  It sustained me

  Sam called me on Friday to pick him up from school- just as I had run out of things to clean.  Thank goodness for that-as I had been perilously close to taking the neighbors clothes (whether they wanted it or not)   I went in to the school and saw a man at the far end of the hall..I figured he too was eagerly looking for his kid..until I heard "Mama?"...that "man" was my Sam. He RAN to me and caught me up in the biggest and best spine cracking feet off of the ground hugs. "Hey Mama!  I missed you!" (squee! he missed me!) "Hey buddy! Did you have a great time?"  "I did.".."You forgot your pajama's." "Yeah..I slept in my shorts." (he slept in his shorts!) "That was smart thinking.".."Yeah...oh, I almost forgot...(he hands me his bag) this is for's my laundry.." Oddly enough-I didn't feel like washing it... There are only four years until he leaves for college..sigh...I don't think that there is enough detergent in the world for that...

* This past week, three autistic children died as a result of their wandering. There are far too many negative voices both in the online autism community and from parents- who feel just so damn superior in either their parenting skills and or experience that they dare to criticize these families.  As if these children's lives and deaths are open to public debate. I am disgusted.  I wrote this joyful piece to maybe try and erase some of the horrible and unconscionable comments made towards these families. My heart goes out to them.  I hope that they may find some peace.

  "The deep pain that is felt at the death of every friendly soul 
arises from the feeling that there is in every individual something 
which is inexpressible, peculiar to him alone, and is, therefore, 
absolutely and irretrievably lost."
~Arthur Schopenhauer

Saturday, May 18, 2013

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 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...

Sunday, May 12, 2013

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 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.


Saturday, May 11, 2013

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 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...