Saturday, October 25, 2014

Sleepless, Sleeping, and Sleepy in Maine..

~"If you want something other than the obvious to happen; you've got to do something other than the obvious."~ Douglas Adams

 I am very thankful for Friday this week.  I was talking with a friend this morning, and I remarked that being thankful for Friday now is so different from being thankful twenty years ago..funny how kids change everything. Twenty years ago, the weekend meant the end of the work week-now, it simply means that my schedule has changed. 

Monday through Friday mornings all start out the same.  My alarm goes off, I shuffle in a zombiesque fashion  to the coffee maker (hoping that I remembered to set the timer on it -and actually filled it, so that it is brewed and ready for me.) Coffee in hand, I feed the dog, check the weather, check to see if there are any school delays or closings, and then park myself in a chair and stare at nothing for the next thirty or so minutes. By the time I have had at least two cups..I am ready to start our morning schedule. Schedules are big at chez herd-especially in the morning. For if something is not done exactly to standard-if the routine is even slightly altered-there will be some form of hell to pay later. This actually applies more to the girls than the boys.

Sam and Oscar are easy to wake up. I go in to their room, I say "Boys, it's time to get up."..and they do.  Sure, they may groan a little-Oscar has lately started growling a bit..But, I take this all in stride.Both of them are growing like weeds-and they don't seem to be stopping any time, sleep is important to them. Which is funny considering that neither of them were able to sleep for much of their first four years or so of life. Oscar especially. Back then I didn't have the luxury of waking up and drinking coffee alone. I was always awake..or at least mostly awake. My coffee maker(s) (I went through many) was always on. Omar and I used to try and sleep in shifts-hardly ever at the same time.  He worked late afternoon until early morning..So, I would sleep when he came home-from about four until six..unless of course the boys were both awake...and then, we would..I guess, just deal with it together..Honestly, the memory has become kind of hazy over time.  I do however, remember thinking that I would sell my soul or an organ..or really, anything just for eight consecutive hours of deep uninterrupted sleep..I also remember thinking that my boys were never ever going to be able to...that this was our life-forever. (We did this for six and a half years.)  I think that it was the closest that I ever came to breaking-fully and completely. My boys needed so much back then-and I was doing my best..but-(as I think most parents feel at one time or another)my best could have been better. Would have, should have, could have..sometimes that's the mantra drumming away in my head. Some days it is louder than others..I wonder if I could have done more for them if I had been getting a full nights sleep-instead of just doing the best that I could with my very limited...everything. Yes, I believe that I am a good mother-but the reality of that time will always sting. That is my truth.

  Now, getting the boys up in the morning is joyful and easy-even with the groans and growls.  The girls however, are another story. With them-I start with an alarm clock.  I learned very early on that simply walking in and nicely suggesting they wake up, was perilous to my health.  They are mean.  The alarm clock serves as an initial wake up..they actually have to move to turn it off...which in turn wakes them just enough as to not bite my head off when I come in. This is important because the next step in the wake up process requires powerful oratory skill...and patience.  "'s time to wake up" I say quite cheerfully-yet calmly.."WHY?!" she replies in a demonic voice.."Because it's a school day.".."SO." .."Well honey, you have to get up so you won't miss your bus.".."I DON'T CARE." "But I do!" I chirp.."I have lots of things to do today..and you wouldn't want to come with me..and I can't leave you by yourself.." After a few more "why's" and "So's" on her part, she eventually comes around..turning into the cheerful girl that I know... Then, it is Zoe's turn.. Thankfully, by this time, I am fully awake and performing at peak capacity. Before I can even say her name.."I AM NOT GOING." "Come on have to get up."
"I have a lot of things to do today, and I know you don't want to come with me." Same line I use with Lily..except Zoe has figured it out. She KNOWS that there is a good chance that I am lying stretching the truth-AND with the sharpness of a C.I.A. interrogator she will ask "What things do you have to do?".. I have to think fast..because she requires an actual list-one that she will question-AND if it my answers are not to her satisfaction-she will call me on it.   Some days I just let her stay home. I admit-I don't always have the energy to fight her-especially when we go through this day after day. Most of the time though-she really needs the break. My quiet (at school) girl is easily overwhelmed by everything..only, she has a poker face at school. It is very rare if she lets anyone know that she's having a hard time.  Until she gets home-when, everything she has dealt with comes roaring out..  She has support at school! She has many things in place for when she feels like it is all too much.  Getting her to always utilize these services is our biggest hurdle.  We are working on it. For now though-letting her take these personal days is a tiny concession.  She deals with so much- that letting her have control over this one thing is something I have no problem giving her.

This whole waking up routine seems to be getting harder as the year progresses.  So much so that I am actually considering getting a nanny for myself.  You know, someone to make me coffee, make sure my hair is brushed before I go out..all the things a regular nanny does-only for an adult woman. I'll have to look in to it. I'm just glad that it is finally Friday..and that I can sleep in tomorrow.  As difficult as things can seem right now, they are so much better than they were ten years ago..It makes me hopeful for what another ten years can bring.   

Saturday, October 18, 2014


~"Experience is one thing you can't get for nothing."~ Oscar Wilde

   Last night was parent teacher conference night for three of the herd. These things make me so anxious! It isn't that I don't want to meet with teachers..I mean, they spend more time with my kids then I do..So, you would think that I would be just raring to go. Which I am-kind of..but on the other hand-there is still a part of me that feels just ridiculous..Like I am some kind of impostor. As if any minute I am going to be called out "Who is this person pretending to be an adult?"  *sigh* Sometimes... I have a hard time taking my "self" seriously. Unless of course, we are "discussing" my kids..

 This past month we have had all of the herd re-evaluated (privately) for occupational therapy and physical therapy. I try and have this testing done by non school professionals-because I think that it can prevent bias.  I mean that in a positive way.  They don't know my kids-so their knowledge of them won't color their observations..or at least it shouldn't. Oh me of stupid faith!  The girls worked with one occupational therapist-who evaluated them, and wrote up the results in a professional non biased way.  The boys?  They worked with someone else. Someone who I believe-thinks they are..perhaps the autism whisperer? Lord save me from the "experts."  Sure, we got the results of the testing-but we also got little nuggets of speculation..pearls of wisdom that she felt confident in giving-because, she had spent at most an entire forty-five minutes with my sons-with absolutely no input other than what was needed to provide an occupational therapy evaluation.

 Yes, she felt comfortable suggesting a social group for one boy because he apparently had "no feelings of self worth."  and that he had "difficulty with humor"-although he was "tolerant" of the examiners attempts to make him laugh." It couldn't possibly be that she just wasn't funny..or maybe he wasn't comfortable in  talking about personal things with a stranger could it?  Of course not!  My other son has"difficulty sitting still and on occasion reverts to physical aggression when overwhelmed." What?!  How did she come to that conclusion?! No one said anything about aggression!  As if I'd leave a 5'7" 167 pound young man alone with her if he were "aggressive!" .AND after the testing while he was waiting to be picked up-he paced "Who knows what would have happened if the parent didn't return when they did."(he would have continued pacing) I was also informed that he had "a difficult time understanding the difference between reality and fiction"..But not to worry! They had "a discussion about safety and the difference between an idea and reality"  Holy crap!  How he ever got to be thirteen years old without jumping off of a building or trying to blow up a roadrunner-without her guidance-I'll never know!  Oh Thank you! Thank you occupational therapist/psychology wannabe! I think I feel another "Chicken Soup for the Soul story coming on..perhaps for "know it alls Angels among us."? 

  Of course, I called to ask her exactly when she had begun smoking crack. 

  Well, no..I simply asked her "Whose evaluation reports are these? As I have absolutely no idea who these people are." She was not pleased with my query. Could not understand why I thought her input was inappropriate. "Was my son aggressive towards you?" "No." "Did my son say that he did not like himself?" "No."  I asked her what EXACTLY she had based her speculations on-as it was obvious that she had absolutely no idea of the reality of my two boys. That what she had written was a fictional account based on absolutely no input from either my boys or their parents. She really couldn't answer. I informed her that I would be unable to use her evaluations as they presented both of my sons as being other than who they are-and her that her "observations" based on god only knows what- had no place in a professional evaluation. I strongly suggested  that perhaps she might consider rewriting them and omitting the extraneous psychobabble. For some reason she seemed put out.  Maybe she struggles with "self worth"?  If so, I do know a number of social groups she could join. 

  Sometimes it just feels like you simply can not win when it comes to getting services for your kids. It appears as if you are either asking for too much,or you are delusional and unable to see the "reality" of your child's diagnosis. I can't tell you how many nights that I have tossed and turned-questioning myself.   "Am I not seeing something?""Am I imagining too much?? "Am I blinded by hope?"..and the worst-"Am I too emotional." Because unfortunately, passion, intensity and the absolutely all encompassing love that you have for your kids-can be interpreted as's a catch-22, a double edged sword..and it wears you down and wears you out. Sometimes, I just want to stay home-where everyone and everything is our wonderful normal..But I can't.  The outside world calls. Like it or not-I have to go.  Last night it was for parent/teacher I went..  

 I didn't get to touch base with everyone that I wanted to-three kids, too many teachers..But, I saw enough of them to mostly get a handle on how they are all doing. It was a pleasant evening..everything went smoothly...and THANKFULLY, I didn't walk around with coffee stains-in horrible places (that I didn't notice until later) on my shirt..or toilet paper on my shoe...or even worse..underwear coming out of the bottom of my pants.  (Yes, this did happen once. It was clean underwear. That is all I will say about that.) But the nicest most glorious part of the evening were the random comments..the casual stories "Hey, Sam is so funny..the other day he..." and the "I love your (Oscar) know what he did..." and "Lily is such a good girl..she really cares about doing well." They absolutely made my night. Definitely made wearing my "adult" disguise a bit more comfortable..   

Saturday, October 11, 2014

In defense of mothers...(and fathers)

~"But I know sometimes I must get out in the light
Better leave her behind with the kids, they're alright
The kids are alright"~ Pete Townsend

I ran out to run some errands today and I left the kids home. I left them home. Do you understand?  I went out-ALONE. I said "I'm going to the store!"..and with a chorus of "Bye Mama"  and "We need cheezits! and Oreos! and lemonade!"..and.. I slid into the seat of my stylish mini van..put the keys into the ignition..turned on the radio..and escaped left.  It was that easy. Oh what joy!  What wonder! What freedom at being able to turn the radio to my choice of music..and AND play it as loud as I liked!  Go figure..I had always thought that I would be a "cool mom" know, the kind that let their kids actually listen to music in the car.  My mother had always refused. "It distracts the driver!" she would say..and In my teen angst rebellion I'd reply.."When I have kids-I will always let them listen to the radio-as loud as they want!" Oh yeah-I told her!..Now, here I am..the coolest of the cool moms-and my kids prefer the radio off..they prefer the sound of their own arguing over the dulcimer tones of Led Zeppelin or The Rolling Stones...Although..there have been a couple of times when Sam has joined me-singing Bohemian Rhapsody at the top of our lungs as we tool down the road. . So I can't complain too much..

  Anyway..there I was, in my stylish mini van..singing along with Van to the the great adventure of supermarket shopping. Any stay at home parent knows this joy. That heady feeling of perusing produce..I didn't have to pick up just any bunch of banana's! No! In my childless state..I fondled those banana's..picking the best of the best..I even partook of a free sample! Of what?  I don't know! was free!  AND I didn't have to ask anyone if they wanted to try it..even though I knew that they wouldn't eat it..but they would insist..and then invariably one adventurous kid would put it in their mouth, chew it up, and  immediately spit it out (into a napkin) and hand it to me..because  being the"holder of the soggy napkin" ( and any other wet soggy thing)  somehow became my job. But not today! No, I was free to roam the aisles as I pleased..pushing the cart without "help"..I think I might have even been skipping..until I heard it. That noise that even today-stops me in my tracks-flee or fight? 

 It was the sound of a child freaking out..losing it...melting down. It was coming from the next aisle. So I went there. There was a woman-mother? Grandmother? Caretaker?  I don't know..but there she was on the to a little one who was absolutely losing it..there was nothing she could do but wait it out....I made eye contact with her..a kind of a "are you o.k.? do you need any help?" kind of unspoken gesture..She shook her head, and I left her..Of course I could hear the muttering of other people..I could see the eye rolling..sense the thoughts  "What a spoiled brat!"..or "My kids would never.."  You know, the general smugness of the self righteous.

Over the past couple of weeks, two stories have appeared on my feed on Facebook. This and this. .  Both describe the story tellers as wonderful-gods even!  Of course we only get the perspective of the storytellers.  One man went into a Burger King and bought out all of their apple pies to "teach a "bratty" child and his "inattentive" mother a lesson...In the other story, a drunk guy thinks it is a RIOT to fart in the face of another "bratty" boy. And all over the internet-and in the comments, they are hailed as heroes..champions,,.and just oh so funny. They certainly put "those" mothers in their place-oh boy they told "them" Didn't they? The kudos-the glee..It made me sick.  Because the reality...the truth of the matter is.  These men behaved like vile assholes...disgusting mean bullies..Had this happened to me..happened to one of my kids..I would have been broken-smashed, crumbled- because it would have hurt my child even worse..

                                    and the world would have applauded.

It wasn't too long ago when I was that mother..sitting in a store aisle with a kid who couldn't be consoled...Little Bear toothpaste.  Oh how I loathe it.  even today..just the name causes me to shudder a little. I was in the store with a little one..and he wanted that toothpaste..I don't know why he wanted it..don't know where he saw it..until that moment, I didn't even know it existed..There we and my boy. My screaming boy..and all I that could do was sit there-wait it out-keep him safe..I'm sure that we got looks..glares even.. And really-I probably looked unfazed..maybe uncaring..distracted..when in truth I was numb. This was not the first time this had happened-and it wouldn't be the last. Believe me-if the store had carried Little Bear toothpaste-I would have handed it to him gladly..I would have given him a carton-a cornucopia-a plethora-a truckload! if only to get him to stop. Please-stop. .But it wasn't about the toothpaste-not really.  It was about the lights and the noise and the smells-the everything..and he was holding on as hard as he could-and if it meant screaming "Little Bear Toothpaste" over and be it..because I was holding on too..Because we had not slept more than two hours consecutively in the past four years..(I would have sold my soul for one full nights sleep at the time) and he couldn't really talk..and every sight and sound and smell HURT HIM..screaming was all that he could do... and I had to get milk. 

At the time, I really didn't care what anyone thought...or really-notice. But now, years later, standing alone in the grocery store-one aisle away from someone who could have been me- I do. I don't know what any of those women"s stories are-including the woman I saw today.  What I do know is that it doesn't matter.It is not my place to judge.  The only thing that I can do is have compassion. Oh If only that were applauded, The world in which I will soon be watching my children venture out in, would be a better place. 

I am slowly building up the length of time that I can leave the kids alone at home-so, I didn't spend as much time at the grocery store that I wanted to. I'm still getting used to the idea of leaving them at all. It is a wonderful thing.  I came home today with some beautiful bananas..the house was still standing and the kids were alright..