The post I don't want to write.

"It's the hurt I hide that fuels the fire inside me" ~Ray Lamontagne~

  I don't want to write this post. I don't.  I can think of a million things I would rather do than sit here tapping away on my keyboard.  In fact, I would prefer chewing on tinfoil than writing this post.  But I have to. I don't feel as if I have a choice.   It is finally quiet now..the kids are in bed...another week has ended-and I am thankful. It had started out as a promising week.  We had Zoe's IEP meeting on Monday.(if you are new here-two posts down will explain our difficulties) We wound up getting everything we wanted for my girl and then some. So I'm not complaining. In fact the week was pretty good until Wednesday, when everything came crashing down. 

  Oscar came home on Wednesday with three quizzes he had taken at school.  They were all marked with a 100%.  At first, I just glanced at them-and immediately praised my boy for his work.  Then, I sat down to look at them....and my heart dropped.  It wasn't his work. Not at all. 

   Oscar has a full time aid at school.  She helps him with math, spelling, and supports him in the classroom. He has difficulty with fine motor skills.  He can write-but it is very frustrating for him (he is a whiz on the keyboard though) so his aid acts as a scribe for written assignments. She is to copy down what Oscar says word for word.  She is not to correct or amend it.  It is his work in his words. Or at least it is supposed to be  This is how we have always done it.  Now, Oscar has difficulty with both pragmatic and expressive language-it makes his work very distinctive- sometimes downright unusual.  The point is-it is recognizable as Oscar's work.  The quizzes he brought home-were too well written-too well thought out to be his. Because- it appears that his aid took it upon herself to write what she thought were the appropriate answers. Not Oscars answers-HERS.  In her words. Now I'm sure her parents will be thrilled that their child, a graduate student, was able to ace a fourth grade quiz..but Oscar's parents aren't.   Did she think that I wouldn't notice?  Apparently not.

  The next morning, I called the school.  I spoke to everyone that I could think of.  I was appalled..how could this happen? Why wasn't anyone saying anything!!  Little did I know that my world was going to be turned upside down.  You see, it was implied that perhaps this has been going on for a long time.  That Oscar in reality has not been doing any of his work.  That in essence, the school has been babysitting my son for the past...what? six weeks? months? years? My heart fell-dropped-imploded. I swear my blood literally ran cold. I felt like the wind was knocked right out of me. That someone could actually say this-to imply that Oscar was NOT capable..and furthermore allude to the fact that I had no idea after all these years-years!..I broke...crumbled..shattered.  Because..I let myself believe it.  Because I was afraid that maybe I did only want to hear the good things..that I allowed myself to be fooled..because it was about me..and not my boy.  Could this be true? Could I be that shallow..that needy?  I was sick with the thought of it-and damn near hysterical.  What kind of mother am I?

  I did the only thing I could think of. I called more people..I set up an emergency IEP meeting (this Wednesday) and I questioned those who had worked with my boy in the past.  The latter shames me.  There are some people at that school who have given their very best to my Oscar-who are passionate about what they do-who care and want him to work to the best of his abilities. HIS ABILITIES. People who have willingly given me their time in order to help my kids. I questioned them.  I can only say now that I wasn't thinking clearly or rationally. I was so hurt for my boy..so very hurt. How could anyone think that this incredible child-this boy-my son was living a lie.  Do they not understand how very difficult it is for him? Yet, he perseveres.  Every little change, every single sound..sight..smell..everything is a distraction..and yet he still tries...and tries. And he succeeds-in his own way-in his own time.  He does not need someone else's words-he has his own..and although they may seem odd from time to time-they are his and he earned them. 

  I am so sorry that I allowed myself to fall into that trap . The trap of doubting myself-and far worse-doubting my boy. He deserves better than that.  He also deserves people around him who are responsible. Had I not bothered to look at his quizzes...had I not bothered to call..I would not have known any of this.  It makes me wonder, would anyone have called me? I'm not sure. I do know this-the people who speculated about Oscars ability and my naivety are cowards.  They have no problem discussing it behind closed doors..I'm sure they even acted appalled and shocked...but did they say anything to me? When they saw me in the hallway at school..did they express concern?  Did they ask to speak to me..call me..send smoke signals-no. That is unacceptable.

  I do not know what the outcome of this meeting will be.  I do know that excuses have already been made..floundering has commenced-and I am angry. My son deserves to be treated with both dignity and respect. I'll not have it any other way.

  I so did not want to write this post..I have three others almost ready to go-but this one...sigh...this one just needed to be let out.  I'll be back to my regular self next week. You can count on it. Just as you can count on all of these issues being dealt with at Wednesdays IEP meeting.  No doubt about it. None.      

Tonight...

~ "Tonight tonight won't be just any night.."~From West Side Story

-music by Leonard Bernstein, lyrics by Stephen Sondheim

 Tonight is going to be a momentous night for one girl..one of her first big steps into the exciting unknown..Tonight will be her first ever date. No, it isn't the kind where you have dinner or go to the movies..and definitely not the kind where you sneak off to be alone together and kiss..it is so much more innocent than that.  Where you are more friends than anything else. But, it is still so special..because it is the first..The first time you have been asked somewhere by a boy..the first time you were chosen..made to feel special..made to feel pretty and popular..I still remember my first date nine hundred million years ago. His name was John and he asked me to the seventh grade dance.  I can't really recall the details..although he probably wore flannel .  I felt wonderful..yes unsure.. grown up and oh so sophisticated wearing my Bonnie Belle lip-smackers (Dr. Pepper flavored)  I was twelve years old and I felt so mature ...I was living life to its fullest!...at least until 9:00 when my mom picked me up.

  So I think about that girl ..and I wonder if she will remember this night..this first..this boy who asked her. I guess that it doesn't really matter.  Because I will remember. Because tonight, Sammy's is the boy who asked that girl.  Asked! .My boy asked a girl to the dance!! sigh... My not so little son is drifting into that strange land that falls between boy and young adult.  Going from one "hood" to another. Interested in girls but having no idea why. I look at him and I am at a loss for words..my heart doesn't know whether to be happy at such growth or sad at such....growth..  Here is the kid that so many people said "would never"...and yet he did..and does.  And really-I know that this is wonderful...and monumental..and all kinds of good stuff in between..and yet..and yet...it hurts. What in the world is wrong with me!!??

As I helped him get ready for the Halloween dance (He was "Manus" from Symbiotic Titans) I set some ground rules.  He was not to leave the building...he was to pay attention to his "date" as he had asked to be her escort...But-most importantly, he was not to hit her or anyone else in the head with his light saber. Yeah...we had to improvise a little on the costume-but he didn't have a problem with it. (another HUGE step)
 We dropped him off at the school and told him to have a great time. Three hours(of pacing) later..we picked up a tired but happy boy. "Hey-how was the dance buddy?"  "Great."..."Did you have fun?" "Yes." ..."Did you meet your girl?" "Yes."..."Well???" "I'm hungry..can I have a snack?" "Yeah...did you dance..?" "Yeah..my feet hurt." "Did you dance with your girl??" "Uh huh..can I have some cookies?"  Arrgghhh...this growing up stuff is really really hard on an innocent mother! sigh..But I figured if he wanted to tell me about it he would.  I've got to give my boy some room..like it or not.  Even if I am dying for details.

   Later on as he was going up to bed he said "Mama?...can I tell you something?"  Part of me wanted to believe he would talk about the dance..but the experienced part of me knows better. "yeah bud..what's up?" "You know that show Deltora Quest?..well, they are going to the Sea of Rats...crazy huh?" "uhhh...yeah?"
"O.k....goodnight Mama".."Goodnight buddy.." Good night indeed.  

   

  

  

A scary tale of IEP's and permanent records....

~"Trouble...trouble trouble trouble trouble...Trouble been dogging my soul since the day I was born."~ Ray Lamontagne

     It was a dark and stormy night...well actually it was a lovely afternoon...the sun was shining, there wasn't a cloud in the sky..it was a perfect fall day. I was on my way to an I.E.P. meeting..Zoe, my youngest, needed to have services set up for her in the pre-school. She was officially diagnosed with PDD(nos), selective mutism, and tics, roughly about four months ago.  For the past year, she has been receiving occupational therapy for weak motor skills. To put it in a nutshell-my girl has needs. I figured that this would be a quick meeting-set up her services, sign a couple of papers, make some small talk and I'd be home in plenty of time to down a gallon or so of coffee before the herd was home for the day. I am not a novice at IEP meetings.  After participating in them for ten years, I see myself as sort of a professional.  I am to the IEP meeting  what the "Lord of the dance" is to...well dancing-only my shoes are way more stylish. 

  So I sauntered into the meeting, took my seat..made a little chit chat..I was calm..happy even. I believed that my girl was going to get what she needed and life would go on.  BIG MISTAKE. Our case worker started by asking how Zoe was doing at school. Her teacher replied that she followed the routine..didn't talk much, but seemed to be settling in. I responded that Zoe loved going to school-and that talking was one of the issues we needed to work on. From this brief exchange, the caseworker decided that perhaps Zoe didn't need intervention..that because she was able to speak, her right to a public education was not being impeded..and that she wouldn't qualify for services. I interjected with "She has a diagnosis of select mutism AND autism!"  and was roundly told "Diagnosis doesn't mean anything-and that if she didn't have a diagnosis, she could be seen as just "shy" and shyness didn't qualify for services...that perhaps she had "mental health issues" that could be dealt with in therapy-something the state didn't have to pay for deal with and furthermore...would we want this diagnosis on her PERMANENT RECORD?" (cue creepy organ music and blood curdling screams) 


  Oh good lord!  The permanent record ploy? Really? For those of you that don't know-the idea of a "permanent record" is a tactic used by many educational uummm... institutions across the country. From about fifth grade on-everything and anything you may or may not do in the school environment is said to be put on your permanent record. Test scores.."borrowing" the school van and filling it with crumpled newspapers..after school activities..all of them will be jotted down in ink ..and supposedly this record will be used against you follow you all the rest of your days.  Kind of like a rap sheet without a mugshot. (which in my opinion is the only kind of record  worth worrying about) The thing of it is-this ploy works. Usually. Unless of course you get someone who questions authority. Not that I'm speaking from any experience mind you. But I'll just say this-I graduated high school, went to a decent college, worked, got married, had kids, own a house..so my permanent record (which is a bit interesting) has had about as much impact in my life as say learning geometry or the chemical properties of sludge. But I digress...


  I admit...I was a little blown away by this. A little gob-smacked.  I got a annoyed...frustrated...a tad bit angry. I strongly suggested she read the DSM..(hell, I even quoted it!) that in doing so she might realize that autism was a neurological disorder. I asked her how mental health therapy could possibly benefit my daughter." She's FOUR YEARS OLD! What in the world would she possibly talk about-My little pony??!!" She then suggested that perhaps I would consider cancelling services for a while to "see how things go.."( As a side note to anyone here new to diagnosis-CANCEL NOTHING! You will have to fight a zillion times harder to get services reinstated)...She then of course assured me that getting services back would be "simple". HA!...sigh.. I am only slightly ashamed to admit that at that point I asked her if she had been "smoking crack"....   We were at an impasse.  Neither one of us was going to budge. So we agreed to have an educational consultant come in to observe Zoe in the classroom. That we would meet again in thirty days to discuss the results of those findings.  In the meantime Zoe would continue to receive services.


 Of course as soon as I got home, I began calling every advocacy group that I could think of and was considering consulting an education attorney. If I had to fight, I would. No one messes with my kids and gets away with it! I am an experienced mother!..and I wear great shoes! sigh...  Wouldn't you know it... It seems that all of my phone calls turned out to be unnecessary.  After spending two days in Zoe's classroom...Guess what?  The consultant believes that my girl has issues after all!  When our our caseworker called to tell me that perhaps Zoe did indeed qualify-I exclaimed very loudly (in my head) "You mean that I wasn't making it all up! Wasn't in some sort of plot to bilk the state out of money in an effort to get unnecessary services for my daughter! Because really, autism is the "thing" to have these days."  The caseworker then had the audacity suggested that we might want to use "autism" as the official diagnosis because "it will open doors for her to get the services that she needs."  I again held my tongue. Didn't mention her "permanent record" or "smoking crack"....Or the fact that this conversation was redundant.  Oh but I wanted too. Really..But even I know when to keep my mouth shut. (most of the time)...(see permanent record) 


  What I failed to consider before our meeting was our recent state budget cuts. The intention of our caseworker was to cut us off from services-thus saving her agency money. In essence, letting her agency off the hook-and in effect, dropping it into the lap of the school system next year. (kids aren't covered by this state agency when they start kindergarten) I also believe that she thought she would be able to walk all over me. Big mistake. I mean, if she had only read my "permanent record" she would have known better. 
  

He aint heavy..he's my Little Bill?

" I arise in the morning torn between a desire to improve the world and a desire to enjoy the world. This makes it hard to plan the day."~E.B. White 

  

  I don't know if any of you are familiar with the children's show "Little Bill".  It is a cartoon (created by Bill Cosby) about a little boy.  Oscar really likes it...a lot..although not to the point of obsession like he was with "Caillou" or "Thomas the evil Tank Engine" but he really enjoys this show. For some reason (that he won't explain) he refers to the character of Little Bill as his" brother". This in turn aggravates Sammy to no end. 

  "Mama! My brothers coming on!" "Oscar...he's not your brother!" "He is too Sammy! Little Bill is my brother." "Oscar! He can't be your brother!"  "But he is...he is my brother!" "Oscar..look it isn't logical.  How can he be your brother when he lives all the way in New York City?" "But he is..he is my brother!"  "Oscar!! That doesn't make sense.  Look you live here with us and he lives far away so he can't be your brother..Mama..tell him that Little Bill can't be his brother!" "Sam, if Oscar wants to say he's his brother-LET HIM!..It doesn't hurt anyone." "But Mama..Look..it isn't logical..he lives too far away." "Sammy..I have brothers who live far away.." "But they are grown up!  Little Bill is only five!  It doesn't make sense..a five year old doesn't live that far away..Oscar! He can't be your brother!"  "But he is Sammy..Little Bill is my brother."  And on and on it went until..well..until I got sucked further in.."Sammy" I said calmly "Of course he can't be his brother-we know that-Oscar knows that. He is just having fun...he's pretending...using his imagination..leave him alone."   "But Mama! He..." "Sammy-stop! Let...IT...Go."  "But Mama it isn't logical.."  "SAMMY..Oscar knows he can't be his brother! He is a cartoon!  Logically, I could not have given birth to him..Believe me I would know if I had..I could not have adopted him..there are no adoption agencies for cartoons..If either example were true we would have made history..so no..of course Little Bill is NOT his brother..but if he wants to say he is...LET HIM!!!!!"  "but Mama! It's not true!" SIGH..sometimes I wonder why I don't drink. "Sam..why are you letting this upset you..it is no big deal." "Because he keeps saying it..." "Sammy...Oscar says a lot of things..if you don't like it...walk away..ride your bike...go upstairs...play the computer..but for the love of all things holy..LET IT BE!"  "Fine...but he's still not his brother.."...from the playroom comes a giggle and a "yes he is Sammy...Little Bill IS my brother..heeheeheehee"

  Sometimes the two of them...well...sometimes I just can't win. They can both be so persistent.  Which can be a wonderful quality to have.  Although unfortunately at times it can work at cross purposes..like with Little Bill..or Suzy the mannequin at Old Navy.  They get entirely too caught up in reacting and... reacting...and I wind up getting sucked in.  Believe me-I'm not complaining. We have a very vibrant household...  and at moments like this, all I really have to do is look back to see how far they have come.  There was a time when neither of them spoke.  When I didn't always know what they were trying to tell me.  How frustrated we all were.  So you will never catch me complaining ...gently moaning perhaps..but never complaining. Most of the time I look at them in awe.  Usually for good reason.

  This past week Sammy,( the boy who had once stopped talking), was elected to the student council. ELECTED!!! You know that thing where people have to vote for you? Elected-my boy. I am overwhelmed with it all. We were told so many conflicting things in the early days of diagnosis..some better than others..but none very positive. I think back to that time..how afraid we were..afraid to hope..almost afraid to breathe..and now-we are breathless.  His teacher emailed me to say that Sam had given a very articulate speech-that in fact this is what swayed the vote. My boy-a speech!  In front of people!  How earth shattering is that?  I asked Sammy later what he had spoken about. He told me that he spoke about  his concern with too much talking in the classroom, the use of "bad" language and...well the tables in the cafeteria were too scattered and should be lined up neater....I guess some things never change...


  I don't think that Oscar purposefully pushes Sammy's buttons all of the time...at least at first.  Oscar says a lot of "interesting" things.  Usually, once he gets it out-it's out, done-over. But when Sammy starts getting annoyed-Oscar becomes a little bit like Roger Rabbit. He HAS to respond-HAS TO....which makes for interesting arguments at our house.  Either way-I would like to make it quite clear that although Oscar may have some of the tendencies of Roger Rabbit-Mr. Rabbit is not is biological father..nor is Little Bill his biological brother. I have never been intimate with a cartoon character.  I swear-REALLY!...It wouldn't be logical.  Just ask Sammy.

17, 12, 100 with miles to go-but at least I get sleep...

"Men are from earth.  Women are from earth.  Deal with it."  George Carlin

 Saturday mornings have evolved in our household. I woke up today on my own. How lovely it is to open your eyes at your leisure! To wake up when your body tells you to. You see, in the not so distant past it was very different. No longer am I woken up by four children, their faces a half inch from mine..having a very loud discussion on whether or not I was going to get up soon-

  Thinking back now...it has been twelve years since I was able to do this-twelve years exactly. I remember back to the beginning..It was a glorious fall morning as we made our way to the hospital.  My water had broken the night before-and aside for some slight back pain, I was doing pretty well.  So well in fact that I stupidly innocently exclaimed "This is labor? I can do this! Piece of cake!"  sigh.. I was so very young and ignorant.  I had not yet been introduced to the world of pitocin..I had not yet found myself begging asking for the anesthesiologists home address after my epidural fell out. (yes, I was more than willing to drive there.) I had not yet known what it was like to hold a newborn baby in my arms..the terror and wonder of it..oh and euphoria (labor was over) I had no idea of what to expect over time..what the next twelve years would bring..The ups the downs-twists and turns..I certainly didn't know how very blessed I was.


 Today my Sammy-my wonderful boy turns twelve.. Oh I know sometimes I make him angry, make him do things like homework, cleaning his room...tying his own shoes..I know I have made some mistakes..said the wrong things..didn't understand what was going on in his life. Can't tell you how many times I have wanted to kick myself..wanted to take my words back..wanted to jump in and take over because I didn't think he could handle some things on his own. Too many times to count. And yet, regardless of all my mistakes..here he stands..Joyful and loving..an absolutely incredible boy. I look at him (well really- all of my kids) all that he is and is becoming and count my blessings.  Every second of every minute of every day since he was born, has been a privilege and an honor..a joy and an adventure.  Yeah, we've had our rough times..but who doesn't.  I will say though- that having a partner in crime parenting has made a difference.

  Not only is it Sammy's birthday-but it is our seventeenth anniversary as well. To quote the Grateful Dead.."What a long strange trip it's been."  What started out as..well..a fling (for me it was lust at first sight) has turned into the adventure of a life time. Through thirty plus moves..being broke..being solvent..through fire and flood..near homelessness..three houses..running a business together..legal issues..and oh so much more..Here we are-with four incredible children..more in love than the day we were married. Omar has been the anchor to my wind..my constant companion..my best friend and my biggest champion. He holds the part of my heart not reserved for our children. Together we raise our wonderful babies..live our lives, dream our dreams...Together- we are "home".

  This is the one hundredth post for this blog. I started writing almost two years ago out of frustration. I was becoming so very annoyed with how autism was being played out in the media. I couldn't relate to any of it.  Especially when I was being told by celebrities like Oprah that families like mine were tragic. We aren't tragic..we are a comedy-sometimes of errors..but a comedy nonetheless. My goal when I started this blog, was to write at least one post a week. This was a place for me to tell our story-in my own way.  To tell the truth-I didn't expect to be read...didn't even think about it. The fact that I am..well, it's thrilling..and flattering..and all kinds of wonderful things.  I thank all of you who have kept up with me..who have commented or just stopped by and read. It really is very lovely of you. It also inspires me to keep at it..to write that one post a week..it gives me purpose....and a reason to write. So Thanks...

  So as it is my anniversary and Sammy's birthday...AND I have written my post for the week..I am going to go wrap some presents...and enjoy the wonderful day that this is. I do hope that Omar gets home from work soon..theres cake....double chocolate...and it's calling my name.