Saturday, December 20, 2014

The beautiful of all that is...

~"I hate writing, I love having written"~Dorothy Parker






The herd when this blog started..






               Once upon a time...about thirteen years ago, (maybe it was twelve-time makes things blurry)  we learned that our Sam was autistic..a few years after that, Oscar...and..well, you know the rest..it has been sort of like domino's..only not in order..
 

Shortly before I was tethered, bound?  totally immersed..or whatever you call it-heart and soul to these four amazing beings..I was pretty carefree..We were pretty carefree.  Sure, we had our worries here and there..but nothing like the worry that you have once kids enter the picture...Not at all.  It's as if once you have a kid -BOOM-worry has kicked open a door to your brain..and takes up permanent residency..without paying rent. 

Growing up, I didn't dream of a wedding day or motherhood..it isn't that I couldn't imagine the possibility..I just didn't think about those things.. I had bigger fish to fry..adventures to have. I admit, I was kind of surprised by Omar...didn't believe in love at first sight..or actually in my case-lust.  But there you go. We met..and it just..was-WE just were..I don't know if that makes sense...Even then-I didn't give much thought to having kids..we were together for seven years before Sam was born...and now, here we are with four..go figure.

I really didn't have many expectations when I was first pregnant..although I did have many rude awakenings after giving birth.  Oh so many...my life was no longer my own-and that took some getting used to..actually, a lot of getting used to. But the thing of it is..well, I didn't "expect" anything from my kids..other than they just be. I figured that you gave birth to these little humans and they would eventually grow into big humans..That my job was to grow and love and nurture these beings into adulthood where they would go forth and..well..do whatever it was that they wanted to do, The adventure was in getting them there..the rest would be up to them..

I am not going to lie and say that autism didn't shake things up-it did-it does. Some things things aren't as clear cut as I imagined they would be...but then again-what is? We roll with them...and continue to roll...most of the time even merrily..but lately? We are rolling in so many directions it's hard to keep up..It isn't bad..it's just ..confusing..

 I started this blog a little over six years ago,,,the kids were little..I could keep them together..herd them. We had our challenges..but mostly, I spent my days looking for shoes..
because someone was either always losing one (always one) OR someone refused to wear them...so they stuffed them somewhere I couldn't find them...and then, they forgot where they hid them...and hilarity ensued...not. 

 They have bigger dreams now..they have wants..they long for the things I can't give them.  Sam (who started out on this blog as "Sammy") can not wait to leave home..can't wait for whats next...so much so that he isn't paying too much attention to whats now. It's hard watching him struggle..watching him fall...hard to LET him fail. I have to..have to let him make mistakes..fall behind in classes..watch him scramble to catch up. We found an art class for him on the weekends which he adores. I love (when I come to pick him up) listening outside the door..hearing him joking around with his classmates.  He has found his tribe, So, while it is hard to watch him stumble..he is finding his feet...

  Oscar..my funny boy young man-has become so introspective.He still jokes around..still likes to make us laugh..It is just more thoughtful and not so random... He had an anxious moment the other morning..I don't know what set him off...but, as I knelt down in front of him..I reached up as I always have- to stroke his hair and I couldn't.. my arms were too short...I couldn't get to him...and I'm not so sure that he wanted me to. I was lost..and at a loss.. The moment passed..he soothed himself..as he walked passed me he took my hand and squeezed it..saying nothing and everything..

 My girls..my girls are struggling-one way more than the other..Funny, my boys had so many difficulties when they were younger..my girls seem to be erupting with age. Girls on the spectrum are more complicated..I think,,,or at least mine are. Girls present differently..getting professionals to understand that isn't always easy.  Most studies center on boys. That has to change..We are so fortunate to have some very good people supporting them.  

They are lovely works in progress-these girls of mine..not yet young women...but not such little girls either. They are at tough ages...I know because I was once that age-and I'm really really glad that I am long past it. I often hear people reminisce about their youth..and how they wish that they could go back,,,and I think that they are crazy..Really just nuts..out of their heads...senile?  You couldn't pay me to go back..well..it depends on how much money you offered..it would have to be an astronomical amount..but then..if I had all that money..I wouldn't have this . hectic sometimes complicated..mostly joyful..beautiful wonderful and very full life. I could do without looking for lost shoes...yes, I'm still doing that...only now, it is for my own. Mostly.

girls 6 years later




             
The boys six years later (bad shot of Sam-he will probably be mad at me for posting this-sorry buddy!)

Saturday, December 6, 2014

Intermission



I have taken a slight leave of absence from the blog-not to worry, I will be back next week. The holidays..and the kids have kept me on my toes.  We have had a few adventures, a couple of mishaps..and sadly a horrible outbreak of eczema...I am just too damn itchy to write.  Never fear-I finally got an appointment with the dermatologist ( top of the DR. food chain)  this coming Tuesday (if I have any skin left),,so I should be back with some stories to share next Saturday,,like-My six year blogoversary  (holy crap-I've done this for six years) Sam has found his tribe! We found him a comic book/drawing class...misadventures of trying to get an IEP..*sigh* does it never end? Really? Does it?  I'm afraid that if I die..I will see "the light", follow it and it will lead me to an IEP meeting...and last but certainly not least-our wonderful Thanksgiving. So until then..I will leave you with this picture of our lovely Thanksgiving pizza....some of us did have turkey..at least a few of us did...




Saturday, November 15, 2014

Nourish..

~"If the sun refused to shine, I would still be loving you. When mountains crumble to the sea, there will still be you and me.."~Robert Plant and Jimmy Page









         
(I swear it only looks like I am choking him!)
"Let's go out tomorrow night.".."Huh?" I said.."What do you mean..you want to do something with the kids?" It had been a while since we all did something together."No-just me and you..lets go out." "What do you want to do?"..I still wasn't getting it...OUT? what does that mean? To me, "out" is leaving the house..having to actually put on shoes and possibly remember to brush my hair..out is going grocery shopping..or to the dentist or any other sort of appointment that I would much rather stay in than go to..He looked at me "The kids are old enough to stay by themselves..lets go out-just you and me." "You mean..on a date?".."Yeah-lets go out to dinner.".."Like a real dinner? At a real restaurant?.."


 We have gone out alone a few times in the past..usually to Christmas shop..or do some sort of errand that needed doing..but we haven't gone "out" for no reason other then wanting to since Oscar was a baby..and even then..it felt like a requirement..something that we were supposed to do because that's what keeps marriages strong. ..We tried!  We did.But, we just could not relax-all thoughts were on the boys.( who were not happy we were gone).."Do you think they're o.k.?  Should we call home?"-And that was before we had even left the driveway!  Back then-going out was an ordeal.. So we just stopped trying to do what other people thought that we should do and Instead we focused on this wonderful family that we have made. Preferring to be together-preferring to just..be...and truly-I've never felt like anything was missing-and I don't think that Omar has either. Sure, we have each had our "moments"..but mostly we laugh..which is easier then running away from home and say..joining the circus. 

 "Yes..I'll make reservations to someplace nice and we'll just go." "Alright.." I admit, I was a little hesitant..I haven't gone out out..you know, like to a REAL restaurant in years..I was excited too. A REAL restaurant!  With cloth napkins..salad forks!..no crayons..no basket of fries to keep kids happy..no lids on cups..cocktails! ..A place where I would be "ma'am" or "Kathleen"..or even "Hey you"..anything other than "mama.." I couldn't wait to get dressed and go..The kids were excited for us as well..it was almost as if it meant more to them than it did to us..which was a gift in and of itself. They are starting to be ready to let us go..lovely and bittersweet. We have done a great job and are about to be promoted..scary that.

So, I put on a dress that Omar had given me years ago-but I have never had a chance to wear..and with a DETAILED list of instructions(do not kill each other) and phone numbers (do not call unless there is blood)..we left. We went to an Italian Restaurant whose menu DID NOT include pizza..We had cocktails..and appetizers..a lovely dinner..I even had someone grate fresh pepper on my dish!  Do you know how long it has been since someone put something on my dish that wasn't pre-chewed? A very long time. We just talked..and laughed..eventually (the waiter really needed to clean up) leaving to get coffee and to take a walk...on our way home we stopped to get ice cream (for us!)..As we were driving home some four hours later..I looked at Omar and gasped.."We didn't talk about the kids once!" ..and almost simultaneously we said "Isn't that great?!" We laughed..and then got quiet...I guess this promotion thing goes two ways..maybe we too are ready to let go of them...just a little...lovely and bittersweet..

Omar and I celebrated twenty one years of marriage this past October. We have had wonderful times..and some horribly awful  times..we've walked through fire and have come through it changed..but we still walk together...we raise each other up, sometimes hold each other up.. he is one of the best people that I know-my partner in time. I look forward to our next night out together-and hope that it doesn't take another fourteen or so years to happen..


I HAD to add a picture of the dress!

Saturday, November 8, 2014

Small town big Halloween

~"Thunder bolts and lightening, very, very frightening me.."~Freddie Mercury



          





                 "Mama?"..."I need lightening bolts for my costume.." "Lightening bolts?" ..I pause...I am all ears, the outside world does not exist.  It is just me, Zoe and the very important next question ...the sixty four million dollar question.. THE question to end all questions!  

"What are you going to be for Halloween?"

I brace myself for the answer..will it be an easy costume? Do I have all the things to create  it at home?  Or, will I be desperately running from town to town to find the odd bits and pieces that make up the elaborate image that they have in their heads? Oh- Halloween for us-is a very serious business.  From the creating of costumes and the planning of trick or treat routes to the very serious candy trading at the end of the night (honestly, my kids behave like the heads of drug cartels when it comes to trading candy..intensely negotiating the value of chocolate vs. gummy treats) Very serious indeed.

 It isn't always easy living in a small town. Everyone kind of knows everyone..(sort of like six degrees of separation..give or take a degree) or at least thinks that they do. Sometimes I am just astounded by the things people tell me that I have said, done or even plan on doing. I mean, when the person you hired to work on your house (who lives an hour away) asks "Hey, when you are going to start building the second home?"..."Huh?"  "You know, the second house...over on the corner of your property..?".."What?" " The house you are building for your boys to live in when they are adults.".."Wait...what?  I'm not building my boys a house! " Oh.. that's not what I heard.." "Where did you hear that? " (insert name) told me." "I don't even know who (insert name) is!" "Well, that's what they said.." 

There are really wonderful things about my small town as well..One of them being that they take Halloween seriously too. Even better-everyone and anyone who wants to- can participate. From tiny babies carried by costumed parents to the senior citizens putting together a haunted house..that's actually scary! (Omar's heart skipped a beat when he had bent down to look at a "mannequin" that was laid out in a coffin-only they jumped out at him) It is a no holds barred celebration of all things scary-and candy. There are streets blocked off for trick or treating, fund raisers for the library and key club..restaurants providing treats and hot drinks..the police and fire dept handing out candy...even the funeral home (which gives out large sized candy bars) joins in. Some people decorate their houses and hand out candy in costumes-and character! (my favorite is lived in by a couple of guys who dress up and scare the hell out of everyone as they pass out candy..this year, one was a crazy bride(?) and the others were some kind of winged creatures crawling around) They out do themselves every year..It is fun, it is joyful, and EVERYONE is equal. Yes, Halloween is a big deal to all of us. 

 So, as I waited for her answer..I thought back to some of the more interesting costumes we have made.. "Ghost rat", "peg leg pirate clown" and my all time favorite "yellow dog with rainbow tail with a sun on the end of it"..and I hoped that maybe this year she would be a  cat, or a witch...something easy-that didn't require hair coloring or sewing. 
 "I'm going to be my avatar." "Your what?" "My avatar..the character I created for animal jam-Lily is going to be her avatar too" "O.K....what do we need ? "Oh..it's easy..just pants and shirts..and Lily needs a blue vest and a hat."  "That's it?" "I need lightening bolts for my hair.".."Anything else?" "No."   "That's all you need?".."Yes!"  Great!....And then it was Halloween.

"Mama..my costume needs more things..it's going to be boring!" "I ASKED you a million times- at. least.-if you needed anything else! You said no!"...and then..*sigh* her eyes tear up. "..*sob* I..Forgot"..now the tears are rolling down her cheeks..."I'm sorry! *sob*".."O.k..O.k..What else do you need?"..."A collar....and pink hair...and lightning bolts on my shirt".."Oh, is that all?".."Yes." sometimes sarcasm is wasted on the young...I managed to dig into my supplies and make a collar (old belt), I had pink hair color from who knows when...but the lightening bolt on her shirt? For some reason..I just could not get it right..maybe it was all the sugar from the eight million pieces of candy I had eaten that day (my girls don't share-so I buy my own...about a week before Halloween...and then.....I buy more because I eat it all..and it's Halloween and you have to eat candy on Halloween..it's the law..for me at least...) mental deterioration?  I do not know..But, it took me three hours to make. I think it actually came out great...My girls were happy with their costumes-even if everyone else asked them what they were supposed to be. (Personally,I think that Lily looked like a Walmart greeter ) We all had a great time..and I was able to write a post about it-when really, I just wanted people to notice the fabulous lightening bolt on Zoe's shirt. I'd say that calls for some candy...except we ate it. All of it...really.  



  

Saturday, November 1, 2014

.Scary...

~"What I do is between me and the Lord, to examine and possibly alter the state of grace in which I live, and thereby the state of grace of anybody who listens." Townes Van Zandt


 We were driving to the Halloween/party store the other night..all six of us squeezed  together in one van. This has slowly been happening less and less.  As the kids get older,(and can stay home alone) this type of adventure becomes rarer..So I was enjoying all of us just being together..the boys and their long legs squished into the back (because that is where they have ALWAYS sat) and the girls in the roomier second row seats. Omar and I up front- listening to them talk to each other..having random bits of conversation..("Does Ebola have something to do with your elbows getting sick?")  mostly they were focused on Halloween..my favorite holiday.."When did Halloween start anyway?"..."I think it was in the year seven.." "That doesn't make sense!  Everyone would have been seven years old!  Seven years old people don't make up holidays..because they don't have anyone taking care of them and feeding them and they were mostly probably eaten." 

I just adore they way my youngest thinks.She has an opinion on EVERYTHING...usually delivered with great disdain..She is so very passionate, so full of ideas..opinions...AND, she saves them all for home as she is not comfortable speaking at school. Which sometimes works against her..

  She came home the other day just beside herself. A group had come to the school to bring disability awareness and sensitivity training. Only...they didn't seem to be very aware or sensitive.  At least not to my girl..I know of this group as they have come to our school every year we have lived in town..I'm not a huge fan. They talk about changing attitudes and bringing respect towards people with disabilities..but how do they do that? By having non disabled people discuss what disability is. That makes no sense. You can not talk about inclusion when you do not include the people you are talking about in the conversation.(reading aloud a story or stories about a disabled person is NOT inclusion) It sends the wrong message. Us and them.  Unfortunately, it was one my daughter heard loud and clear.
   
 Imagine hearing an adult-an advocate-a sensitivity trainer-discussing a part of you..that  very real part that impacts everything that you do,..just imagine hearing this advocate discuss with another child that they hoped that a cure would be found for this part of you,....that your kind of brain didn't grow right..imagine hearing that at eight years old....As my daughter later wrote "It was shocking. I thought it was true.I got teary eyed...it made me feel different..but not in a good way."

  We are so weird about discussing disability. We talk around it..Pretend that there really isn't much of a difference between abled and disabled. Pat ourselves on the back for being so open minded and inclusive.  But really-are we?  Inclusion isn't declaring the "popular "can get a date with anyone" boy or girl"- a hero for asking a disabled kid to the dance, inclusion isn't cheering extra loud when an autistic boy makes a basket in a regular basketball game, inclusion isn't purposely sitting next to a person at lunch because they are disabled. No, these gestures, as well intended as they may be, are isolating.  They are a direct reflection of how disability and disabled people are viewed. Less then, incapable, one size fits all.
No amount of advocacy, or sensitivity training is going to change that until we include the disabled community in the conversation. That is the perspective we should be listening to. 

  My youngest had a bumpy week...luckily it ended on Halloween. My little town does an amazing job of it..closing off streets so kids can trick or treat safely, homeowners going all out with decorations and costumes, local businesses giving away hot drinks and treats..the senior center has a haunted house (and it is scary!)..all of this kind of restores your faith in the world..keeps you hoping that maybe things CAN change...My kids are quickly growing older,,they are moving forward...I need to believe that the world will move along with them..

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 soon..so, 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.  "Lil..it'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 Zo..you have to get up."
                                                               "NO."
"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

Service..


~"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 irrational..it'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 conferences..so 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) boy..you 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"..you 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 Morrison..off 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!..it 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 floor..next 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 were..me 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 over..so 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..
    

Saturday, September 27, 2014

Whelmed

 ~"It's a funny thing about life; if you refuse to accept anything but the best, you very often get it."~ W. Somerset Maugham












 It has been one of  those weeks..I am simply whelmed..neither over or under-I just am. Standing in a place where nothing more or less could happen that could possibly phase me.
I don't know what happened-only that everything happened at once..well, maybe that's too broad a statement. I should try that again...It was one of those weeks..where things were topsy-turvey..but, as I look back..maybe I shouldn't be surprised by the weird chain of events that has caused my general feeling of being whelmed..it all started..

  Last Friday, I was in the kitchen (where I seem to spend most of my time) getting ready to make dinner for the kids. In walks Oscar. So far-so good... All of my kids are constantly in and out of the kitchen-mostly asking the same two questions "What's for dinner?" and "Can I have a snack?" Now, I am used to being asked these same two questions at least thirty times a day-sometimes by only one child in the span of ten minutes.I think that on those days in particular, their repetitive asking of the same question is based on the concept of "refrigerator magic".  We all know what that is..You open the fridge looking for something good-only you can't seem to find it-five minutes (or less) later, you find yourself in the same exact spot-staring into the fridge  just to check and see if that "something good" has magically appeared...wash, rinse, repeat repeat, repeat..    Like I said-I am used to these interruptions.  but nothing could have prepared me for what happened last Friday...I was preparing dinner when Oscar walked in...he walked in carrying a binder and a folder...a binder and a folder with school work in it. School work. Oscar. Together. 
                      "I need someplace quiet."
                      "Huh?"
                      "I need it quiet so I can study."
                      "You...what?"
                      "I have a Spanish test next week and I have to study."
                      "Who are you and where have you taken my son?"
                       "I'm Oscar!!!"
                       "But...???"
  
It was a magical seven minutes. Seven minutes where I just...stood there-rooted in place..I'm not even sure if I was even breathing. Had I somehow fallen into a different reality? Are unicorns prancing in my yard? Have elves magically cleaned my bathrooms? Never-not once-ever has Oscar chosen to study-much less do homework..nor has he suggested doing either..Not without prompting..FIRM prompting..firm prompting and perhaps dire threats of lost desserts and maybe even computer privileges. In other words-this has never happened. So maybe I shouldn't have been surprised that the rest of my world followed suit...

 Monday started with an early morning meeting for one of my children. It was a productive meeting! We were all on the same page! We all agreed on the various supports needed. It was almost....*gasp*..EASY. But then...I went home and found out that we had run out of oil. (no oil-no hot water) The oil company I have used for nine years-decided that even though I had a thirty dollar credit with their company..I had been late with one payment a few months past-so, they were not going to deliver oil anymore..unless we paid cash up front. In the midst of my rather strong telephone discussion with my former oil company-my husband was texting me-asking for info to give to the new and much friendlier and nicer oil company we are now patrons of. At the same time,I had a friend texting me information about services for one of my kids..then the school beeped in.  One of my children had not one but two mini freak-outs at school.  which on one hand I felt awful for her-but on the other I thought "FINALLY! She's letting them know how she is feeling instead of saving it all up for home!" I had to go and pick her up. BUT-my new oil company was sending a truck over to fill my tank and start my boiler. What to do what to do! So I ran out the door...and as I pulled into the road, the oil truck arrived. Of course it did.   I told the gentleman that I HAD to go get my girl...and he was happy to wait for me! In the five minutes I was gone..my oil tank was filled, and I received a phone message from school about a different kid...So, while the gentleman was making sure my boiler would start, I called back the school while holding the   girl that I had just picked up and was now hanging on to me like Velcro.. I could not get a hold of the person who had called me-so I left a message.-and put down the phone...somewhere..And then- the oil man finished..and the phone rang..but I couldn't answer it because I couldn't find it...of course, then my cell phone rings....but I could not get to it in time because I was carrying my daughter-and letting the oil man out...Just in time for the school bus-The kids rushed in and of course the phone that I couldn't find started ringing again..AND
                             It was only three o'clock and it was only Monday. 

 I could go on about the frantic search for the phone..(I did eventually find it-and lose it again). I could tell you about my cell phone dying..and about losing a pair of pants.(not the ones I was wearing) How does a person lose a pair of pants that they were just folding? I could rant about the dinner I burned while trying to fix the computer..and about the other thirty phone calls I received-some of which I was actually able to answer! I really could go on..Instead..I'd rather wallow in the fact that as chaotic as things were this week-everything turned out the way it was supposed to. How rare and wonderful is that? 

It has been a week since Oscar performed the miraculous in my kitchen. A week that was filled with all kinds of obstacles that seemingly-almost like magic-worked themselves out.As hectic as things were, I really have nothing to complain about.  Although today, when Oscar came home from school, I asked him if he had any studying to do.He just looked at me with..scorn? "It's Friday. I don't do school work on Friday."  Crap...it looks as though things are back to normal...   I was kind of hoping that the elves would stop by and clean my bathroom...

Saturday, September 20, 2014

My new pal Yogibo...

 I get a lot of interesting requests as a blogger...especially when it comes to autism.  Mostly- they are reasonable..i.e. someone asks me to read a book, take part in a survey..asks my opinion on something.  I don't mind doing these things-if I have the time.  Sometimes I will help out even if I don't.  It just takes me longer to get around to them. I do have the best of intentions when I agree to do something.  Life however has a habit of getting in the way. I have at least five different books just waiting to be reviewed, a piece on parents and IEP's that I committed myself to writing as part of a state funded project..plus four kids, three cats, a dog, two chickens and a sexy husband that like having my attention. I am trying not to spread myself to thin.So, I decided that I was going to stop doing the extra bits..take a little down time..step away from the extracurricular...but then I got a request....

Last week, I received an email from a nice man named Michael. He was writing from the marketing dept. of Yogibo.  He asked if I had ever used Yogibo beanbags to help anyone on the spectrum. Furthermore, he would be happy to select one for me to review.
So, I visited the site...and there went my conviction of not doing anything extra! These aren't ordinary run of the mill bean bags. They are pretty-inviting...honestly?  They looked to good to be true. I mean, my kids have always loved bean bags. loved them so much that *sigh* we would always wind up with deflated sacks and beans EVERYWHERE.  So..as he was offering to send me one for free (convictions can be bought) I thought "Why not"..and "Wow-the kids will love this." and...FREE!"  The thing of it is though-I will be honest. I am not going to write a glowing review just because I'm getting something for free. That wouldn't be right. So, I put him to the test.  I said "Surprise me." I said that "parents will contact you asking for your input-wanting to know what might be the best product they should choose.I want to go through this from ordering to delivery and beyond." He agreed.  I described my kids, gave him my address...and here is what happened..


Two days later-this was at my door. My dog wasn't impressed



Sam pulled it out of the box


It was very easy to unpack

Oscar immediately fell on top of it

And started rolling around

Everyone else joined in.  They LOVED how it felt.

Lily liked how it hugged her body

Sam said it was a great place to take a nap


Zoe loved jumping on it


She also loved leaning into it


AND it is big enough for both girls to share

For the past three days, it has been dragged, pulled, jumped on, rolled on, twisted, bent, piled on...you name it-my kids have done it. My children have destroyed couches in less time than that.  But this?  It has held up.  it remains a cozy soft place for them to land when they need it. I highly recommend it.  especially if you have kids like mine. 

Now for the nitty gritty-We got the Yogi Max  which retails for 229.00.  I know that this is expensive to many people. I look at it this way.  I have bought many bean bags for thirty to forty dollars-only to have them fall apart within hours.  The yogi max is durable and incredibly comfortable.  If you or your kids are sensory seekers-or over loaded, this is a really wonderful option.  Check out their site.  there are other options/ sizes available. This is a lovely bean bag-and my kids are really happy to have it.  As an added bonus-if you add "Herd" to the coupon code-you will get a discount!  How cool is that?



I should mention-it also comes with a big box.  Which to some of my kids is almost as good as the bean bag..almost-but not quite.







Saturday, September 13, 2014

Same garbage (truck) different day...


~"Worry is interest paid on trouble before it comes due."~William Ralph Inge






       
  Now and then I worry...well probably more than that.. Alright-I obsessively worry-about my kids futures.and my chickens and cats..the mortgage..insurance..my..*sigh* garbage company-I am not kidding!  I admit that I am a champion worrier-the queen of fretting-the empress of uncertainty!..if only there were awards or monetary compensation for it-I'd be buried under piles of trophies and money..But, as that isn't the case..  

 We have had the same garbage removal company for nine years. Very slowly-but surely-their price for garbage removal has gone up.  So much so that I was either going to have to sell a body part to pay for it-or move into our dumpster as a way of consolidating living costs. So, I did the responsible adult thing and researched other trash removal companies.  That's smart-right?  I even found one that offered twice the removal for half of what I was paying now. Two for less than the cost of one! You would think it would be a no brainer..that of course I would cancel my current service and hire the other company. I thought so too...until I spoke to my account manager..I spoke to him-exchanged words..and more...Which brings me to my other problem.  Sometimes...I talk too much.  It's not that I want to!  No, it's more like I am compelled-driven! You have to understand, I have worked in customer service.  I know what it is like to be on the receiving end of a complaint.

 More than once I have endured the wrath of someone who felt wronged, persecuted even!- because they were served the wrong salad dressing
("I asked for FAT FREE ranch and this has fat in it!" "I am so sorry..I'll fix that for you right away!" " I can't believe you did that!" "I promise it was an honest mistake."  "Uh huh.")
Or their unlimited fries had *GASP* run out!  Oh the humanity!. "The menu clearly states that the fries are bottomless!" "Yes they are." "Well..why did we run out?" "I'm sorry, it has been a busy night-I will refill your basket now." "Well, I can not believe that I had to sit and WAIT-WAIT for them to be filled up! "I will have a mass said in your name." "What?!" "I'll be right back.."


 So I feel this strange sort of solidarity with wait staff, cashiers and faceless telephone clerks. I need them to know that I am on their side!  That I understand that whatever problem that I have is not personally their fault...But then, it gets personal anyway...

"Hi Ms. Leopold, I understand you are thinking of leaving us."

"Hi Mr. Smith..yes, I'm sorry but you are just too expensive."

"Let me look at your account..oh..wow-your rate has gone up."

"I know! I found another company that will do twice the pickups for half your cost- for one!"

"Really?..Wow..that's stiff competition...let me see what I can do here..we really hate to lose long term customers like you"

"You guys are great-really!  I love our pick up driver-he's always so nice about avoiding my chickens..and waiting for me to move the cars and the kids stuff before he pulls in.."

"Oh I know about moving your kids stuff (chuckle)"

"Really?  How many kids do you have?"

  And we're off!.. and before you know it, we are on a first name basis...and a conversation that should have taken ten minutes has stretched out to over two hours. We have shared our thoughts on politics, religion, kids. I know that he needs a new roof (I of course gave him suggestions) that he's on his second marriage, what his kids do, where he eats lunch and what he plans on doing next weekend.  We even exchanged recipes! (His cheeseburger meatloaf dish was a hit with two of the kids-and Omar)  It's madness!  It happens far too much. We have had contractors in and out (mostly in) our house for nine years! It isn't because of the amount of work-No!  It's because we start talking...The other morning, Omar asked where our current one was.."Well," I said.."He had a busy weekend..he had to take his daughter up to school..I think that he has an appointment this morning...did you know that...blah blah blah.." Omar just laughs..""Of course you know that-of course you do."  He doesn't mind-he finds it humorous."Only you" he says as he kisses me and leaves for work..I choose to take that as the compliment that I am sure that he meant it as.

I do not know how to fix it-this customer service worry.  I do know that I have met some very interesting people along the way. I've even gotten some good recipes!  I just can't see myself doing things any other way.  The problem is..well, that nothing really ever gets resolved-not fully..  Sure, I have made a new friend in my garbage company- but it's the same garbage company that I have had for nine years.  Yes, my cost has gone down...but it is still five dollars higher than the other company's price.   What the hell?  

I am going to "try" and switch my cable service this week. I am really hoping for an automated system. Otherwise-who knows what I'll end up with-besides perhaps some new recipes...

Saturday, September 6, 2014

honestly....


~“This wasn't just plain terrible, this was fancy terrible. This was terrible with raisins in it.”~ Dorothy Parker



 

       

 






    Hindsight is an interesting concept.  I guess that for many people, it gives them a chance to look back on certain events with perspective. Perhaps they could have handled a certain situation differently? Maybe they were spot on. I suppose it can give one clarity. For me, hindsight requires twisted sheets and sleepless nights spent tossing and turning muttering "What was I thinking?!!" "I can't believe that I said THAT! It wasn't what I meant!"..and then I wonder how I can "fix" it..smooth things over..make things right...Oh hindsight you are a harsh mistress!
 
    It wasn't always like this for me. I used to be different..quiet (sometimes). But I have come to realize something about myself as of late-something rather important. I have been a full time mother/laundress/housekeeper(sort of)/short order cook/appointment maker and accompanier(among other things) for close to sixteen years. Everything that I have done has revolved around my kids. I don't regret that in the least. However, because I have been so kid focused-kid centered-immersed in all things kid....I seem to have lost my social skills. I no longer know how to conduct myself with adults. Or maybe I just don't have time to do all the social niceties that are required in having a grown up conversation?  I don't know..I guess I'd rather just get to the point and move on. I swear that If I had a school file it would probably say "Does not play well with the other adults."  I'm kind of wondering if this is a good thing or not.

  I've learned a lot from having children. I have learned even more from having children on the spectrum. And we certainly have a spectrum at our house-especially now that we officially know that all four are on it. Someone recently told me that we would be perfect for a reality show...four kids on the spectrum, two loving parents, cats, a dog-chickens! "It would be so interesting!" they declared. Interesting?  I think that it would be rather boring..unless of course- you wanted to watch me ask the kids to "Please put away your laundry!" repetitively-and sometimes in different languages. I mean, if that's your thing-fine...But,we're pretty regular as families go. Or as Sam would say (especially at times when Oscar was doing something particularly embarrassing in public-like grabbing a mannequins butt while declaring his love for it) "Nothing to see here folks!" 

 My kids have taught me to be straight forward and honest-because they are. They go out everyday into a world that isn't always inviting to them-yet,they try to make their own place in it.
They are decent people who care very deeply about the people in their lives-even when those people aren't as considerate of them.I admire their confidence...Sometimes I admire their honesty.. But then again....

"Hey Mama! Look at this old picture of you! Your skin used to be so smooth! What happened?"
"You look really tired and old today Mama."
"Why do your eyebrows look like that?"
"Your elbows are really saggy..."
"You don't need makeup-no one is going to look at you anyway."
        ( My ego soars).

sometimes...I don't. But-living with such  honesty..(and really-it isn't ALL about my appearance-sometimes Omar's is included..)..I guess, has kind of rubbed off-especially as of late. I don't know what has happened-but my already thin social filter has simply gone-vanished-left the building. Which is not helping me win any popularity contests lately. It has gotten so-that If I still had a "permanent record"-mine would say "Does not play well with the other adults." It isn't as if  I'm afraid to speak my mind-to stand up for what I believe in-I'm not!...I just wish that I could do it better...like I do in my head at night when I'm tossing and turning all twisted in my sheets.. 

  I find that I am leery of even Facebook!   All the status updates!  Should I "like" that you are at your grandmothers funeral? Or that you are prepping(in great detail) for a colonoscopy? Or letting your "ta ta's" free? Should I even know these things?  I mean, I am one of your six thousand friends...but still...

  So, I have come to a decision..in the real world (off line) I'm just going to keep quiet (it will be hard) and concentrate on the things that I need to do. i.e. getting the kids to school (thwarted two "personal day" attempts so far) finding gainful employment (I no longer work for free) and hanging out with the people and chickens that I love best..As for social media? I think its best that I don't comment...at least not right away...it's best I get some perspective first....