Weights and measures...and maybe a little rebellion from me.

~"Form follows function-that has been misunderstood.  Form and function should be one, joined in a spiritual union."~Frank Lloyd Wright

     

This past week was Spring break..ten full days of staying up late, sleeping in...a time where we went at our own pace, did things in our own way-our own time.  There were absolutely  no expectations.  it has been lovely-especially because they are all old enough now to get their own breakfast-find their own shoes!  Entertain themselves! And with the minor exception of the daily brawl between our girls, it has been wonderful. We have all had time to relax and unwind-and although they aren't looking forward to it, the kids are ready to go back to school on Monday. Well, all of them except for one of my girls.  She has already declared that Monday will be a "personal" day for her.  *sigh*  My girl has become queen of taking "personal" days this year.  I really don't know what to do.  Sure, I can be tough-insist that she go...even take her in myself (instead of the bus)..I have done that. Dragged my tear stained girl to school-only to be told later.."She was fine!" And there lies the problem..

  My girl has some issues-the biggest being that she appears to really not have any. Yes, her anxiety is recognizable..However, she is a model student..quiet, sweet-meek. She follows the rules, does everything expected of her, no more, no less.  She is exact. At home, it is a different story.  She can be loud-boisterous-her humor rivals Oscar's.  But there is a down side as well. At home she can be mean-sometimes even cruel...mostly towards her sister, but we have all been at the end of her very sharp tongue. After which she breaks down-totally and completely. Crying, berating herself...and sometimes even slapping herself in the face.

  At school, she holds herself so tightly together.  She WILL NOT make a mistake, take a misstep, stand out.  She holds herself so bound up, that, by the time she gets home, she is exhausted. Worn out-wrung. Sometimes she screams, sometimes she cries, sometimes she puts a blanket over her head and crawls on to my lap just needing to be held..and sometimes she just goes to sleep. She has told us that "school is too loud" or "voices sound like scribbles" that she "doesn't like the sound of her own voice" and at the worst of times she has cried out "I am just a weird freak!" .."Oh baby girl-why do you say that?" .."I don't know!"...because she doesn't-and neither do we.

  It is not an easy thing for me to ask for help-especially when it comes to my girl. We have been down this road so many times since diagnosis.  But, that is a whole other blog post.. The thing is-sometimes I feel(when it comes to her) as though I'm seen as some sort of Munchhausen Autism by proxy mother. Academically my girl is fine-great even...socially, she passes..so what's the problem?  If she were like her brothers-who, are more "noticeably" different-I'd have no issue getting help. But she isn't.  Her behavior issues are at home-so it must be a home problem-right?  Even though she begs to stay here-begs to be home schooled.  Which frankly I'm not sure if I am up to the task of doing (I'm afraid we'll just sit on the couch all day eating candy and watching "Ellen") or if being home all the time is even good for her. It is school that she doesn't want to go to.  So I ask for help. 

  It has been suggested that we start her in some kind of therapy. Fine.  If this person can help her sort things out, help her to navigate what is so difficult for her...I'm game. We will do anything for our girl!...almost. On Wednesday, the therapist called. He was eager to start working with our girl..we just needed to fill out the paperwork, discuss what we would like to see happening for her..you know, the usual stuff..until he suggested (in order to get a jump start on things) he come to the house to do this. My first thought was "crap-I'll have to vacuum." It has been a long time since we have had home visits from any kind of therapist. (it used to be that I had a house cleaning schedule based solely on therapy visits-it kept my house clean for years!) My second thought was..."*Sigh*-he just wants to see what our home environment is." Are we crackheads? Abusive? Is the house a mess?Do they still have Halloween decorations up? (no, no, ummm we're renovating!..sigh..yes)  Which pisses me off.
But hey-I could be wrong...We weren't able to meet with him (at the time he had available), so we settled on meeting at school. But then...I got a voice mail from him saying that he had another open slot! Could he come to the house?  We ignored it. It is spring break.   I vacuum for no one. 

As a mother,you wear a lot of different hats. Cook, chauffeur, general fixer of all things.  I am the person that is supposed to make things good and right and above all else-safe. They trust me.  Trust me to tell them what is right and wrong, trust me to help them navigate this very confusing world, trust me when I tell them to do something because it will help them. I'm a firm believer in letting them make their own mistakes-in falling and letting them get up on their own.    But right now, I feel as though I am failing my girl. She is falling- and this time, I have to catch her.  Have to try and make her world better and safe..I have to build her self esteem..to reassure her, let her know that she is magnificent just the way that she is..  Have to-even if it means dealing with home visits or donning a "teacher" hat. Either way, the house will be cleaned...as I would definitely include vacuuming as part of her school curriculum.   

  

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...