Avoiding Crisis

Archive for the ‘personal’ Category

when HFA stand for Hellacious Fight Ahead

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When your child is diagnosed with an Autism Spectrum Disorder and you start to read and do research about what s/he needs, one of the first things you learn is just how very important early intervention is to the management/treatment of autism.  And not just early intervention, but intense early intervention. 

For someone like Owen this means speech therapy, occupational therapy, behavioral therapy and preschool.   

When we left the psychologists office in Miami back in February we still did not know what her final diagnosis was going to be, we had an idea that he would be on the autism spectrum, but not 100% certain at the time.  One of the last things she said to us, and much of what she said is a complete blur, but this i remember, was that we shouldn’t worry too much because there “are lots of people like Owen at MIT.”  I think what she was trying to tell us was that Owen will be successful in life but all I heard was that he was going to be a super bright quirky genius type boy who had no friends and stayed by himself all the time in a lab doing nothing but school work (not that I think for even one minutes that all people who attend MIT are like this…I was much more focused on the autism than the MIT part of it).   

Owen is smart.  We knew that before we even had him tested.  IQ testing told us just how smart he is — very very smart.  It’s kinda odd when you find out at the same time that your child is both disabled and gifted.  While I don’t like to give too much weight to IQ tests, what it does tell us is that Owen has an amazing capacity to learn; that he can be taught that which his autism robs him of — like how to socially interact with peers, how to read faces and understand emotions, how to empathize, how to regulate his behaviors and how to manage his heightened senses.  In the past 6 months, we have found, in order to do this, to teach him, he needs to be constantly challenged by his environment, pushed and tested and forced to deal with things head on.  And only after big huge battles, big blow outs, he “gets it” and changes.

Owen is a quick learner.  For instance, Owen doesn’t like to wear underwear — we think it’s sensory issue, like how he needs to have all the tags cut out of his clothing before he will wear them.  Until this morning, I had to fight with him to put underwear on.  Sometimes he complies, other times I’ll conclude that it isn’t a battle worth fighting.   We always remind him that everyone else wears underwear — mommy, and daddy, abbey and all the other boys and girls in his class.  He’s been going to preschool now for 2 weeks.  I’m not sure, but I’d say that the kids probably go to the potty in groups.  He has apparently seen that all the other boys and girls wear underwear.  I’m not sure if the teachers have said anything to him or if what we had been telling him finally made sense, but this morning he informed me that “boys wear underwear and girls wear underwear and owen wears underwear too.”  (Now, if I can only get him to stop referring to himself in the 3rd person…ugh!)  So that was that.  Then I told him that it was time to brush his teeth.  He wasn’t having anything to do with that this morning.  One battle at a time.  Underwear was on, teeth would have to wait.

It’s little things like this (and bigger issues as well) that parents of children with autism have to go through all day long.  When I’m around other mothers of children with Mild Autism or High Functioning Autism (HFA) like Owen we share our crazy stories and laugh.  “No one would ever believe the crap that we have to deal with on a daily basis” someone inevitably says.  At a playgroup that Owen attends, one mother has to go into the building before her son to make sure the bathroom door down the hallway is closed before he comes into the building, another mother shares how her son has to have two blue crayons every morning at his desk at school even if the color of the day is “red.”  I share how when Owen goes to the bathroom to poop he has to remove all of his clothes, even if we are in a public restroom.  Another mother shares how her son does this to pee and poop — we laugh together at the simple insanity of our lives. The things we allow because we have to, because it’s just how it is, how life is these days. 

When we left Argentina we did so because we couldn’t get Owen the early intervention services that everyone was telling us were so important for him.  We returned to the US because, we, like every other parent of a special needs child, thought that those services would be available.  They are available, at an exorbitant cost.  And while we were naive to think that the State of North Carolina would provide most of the services, that the federal government under the IDEA act, had provided children like Owen the right to an education.  We were wrong.  

The short of our story (which is not a unique story by any means) is that while Owen was found eligible for services under his diagnosis of autism and and IEP was written, he was only offered 3 hours of services a week — a far cry from the intense early intervention that researchers, doctors and educators say he needs.  We are positive that Owen will be able to enter a typical kindergarten class with his peers when the time comes but in order to get him ready he needs intervention.  He’s getting what he needs, of course, because we have no choice but to provide it to him privately.  What else are we supposed to do? 

I’ve heard of stories where parents are bankrupted by their child’s autism.  We aren’t there yet, but I understand how this can happen.

I’m angry with the situation.  I’m very very angry with how unfair this all is.

When people find out that we’ve consulted with a lawyer to see what are rights are they think we are crazy. It’s not a fight we can win, I’m told.  It’s not a system that can be easily changed, I hear people say.  I listen, and I nod, I tell them that I know, I understand, I get it, I do.  But, what else am I supposed to do?  What else can I do but fight.  I fight for my son, for his rights.  Isn’t that my job?  This is not an easy battle, but neither is the fight against autism.  It’s just unfair that you have to do both at the same time.

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Written by nicolemarie

September 17, 2008 at 12:30 pm

you know what they say about how when it rains…

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No, it’s not really raining around here.  It’s quite a lovely day actually.

I’m speaking figuratively.

Things have been rather quiet around here lately.  It’s been nice.  With few commitments bogging me down I’ve gotten though all the research necessary to make our bid list, I’ve kept up with my blogging, done some additional writing, and I’ve even found the time to start (but not yet finish) the two books I picked up last time I was in the United States. 

But at the same time,  I find that when I have fewer structured activities or commitments I tend to waste a lot of time. A LOT of time.   

I know that this may seem totally backward and all, but I find that when I have more to do, especially more structured activities, one’s with real commitments and deadlines, I find myself not only more productive, but more efficient and effective.  The more I do the better I seem to be at each thing I’m doing. 

I’ve been thinking how I really needed to kick my ass in gear and get myself on a more rigid schedule of sorts. 

Sometimes it’s better to not think, or talk, or ponder about such things unless you really do things to change.  ‘Cause, chances are, they will.

Let’s see.  This week I restarted Spanish class and I find myself preparing to sit for three exams between now and November. A few days ago we decided to kick the whole potty training thing up a notch to see what would happen and figured that while we’re already causing traumatic changes in my sons life, why not just take his pacifier away as well.  Next week things will get even busier when the writing class that I signed up for begins.  However, I will miss the first class since I’m heading to Mendoza for a few days.  But thanks for my trusty laptop and a WiFi connection I’ll still be able to log in to the e-course on Urban Planning I’ve signed up to take; it also starts next week.    

And on top of all that new stuff, I’ll still  be taking the kids to art and dance and playgroups.  There will still be plenty of never ending games of candy land and chutes and ladders to contend with.  And maybe if I can find the time I’ll squeeze in some exercising and maybe even some blogging too.

I don’t know.  Maybe a few extra things in my life won’t hurt, maybe I’ll even find myself getting more done.  Either that, or I may just be in for a few weeks of complete exhaustion.

Let the downpour begin.

Written by nicolemarie

September 7, 2007 at 3:14 pm

Posted in life, personal

connections

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the mind is an incredible thing. how a smell or an image can conjure up thoughts from long ago. how one idea leads to another and then another, all which may or may not be somewhat related. how thoughts wonder it directions that at one moment make complete sense and another are totally unexplainable.

the other morning while i was getting ready to take the kids to school i went into the bathroom in search of a hairbrush. I picked up this light purple brush that I often use. After one stroke through my hair the handle broke off. Too lazy to look for another one, I continued using the brush, holding the bristle part in the palm of my hand.

It wasn’t a big deal that the brush broke. I really didn’t care. I have others.

What is so interesting to me about this incident is what it led to. Where my mind went as a result of the broken brush.

See, when the brush broke, as i said, i continued to use it anyway. And as I’m sitting there brushing my hair with a broken brush I start to think about this old natural bristle brush with a brown resin handle that my father had for many years (and he may still have for all i know).

There was nothing particularly interesting about this brush. The only thing was that I had never known this brush to have a handle.

Thinking about my father’s handleless hair brush then made me think about the hideous comb-over that he used to tend to with this particular hairbrush. Which then led me to recall the day the hair dresser cut off the comb over.

We had gone with my mother to Yonkers so that she could have her hair cut, colored and styled by the same guy she had used for years – I can’t remember his name, but i think it was Gino or something like that. Anyhow, i remember that while we were waiting for my mom (and probably after we went to Nathan’s to get hot dogs for lunch) my father decided (or was convinced, i can’t remember which one it was) to finally accept the fact that he was bald. The comb-over was finished.

And then from that I jumped to this one summer when I was away at summer camp in Western Connecticut and it was parent visiting day and my father showed up having grown a full beard. The beard, unlike his jet black hair, had gray patches running throughout.

He’s had a beard every since. There are more gray patched now.

And then I thought about how it was on that very same day when my brothers and I learned that my father had experienced a minor heart attack several weeks earlier but that everything was going to be okay.

And that made me think of the time my parents snuck out of our house early one morning before we left for high school and that while i thought they had gone to work they had really gone to the hospital because my father thought he was having a heart attack. And how later that day, after they knew that everything was okay and that it was just some sort of virus, my mother randomly showed up at my school and got me out of chemistry class to tell me where they had been and what was really going on. And I remember being really angry at that situation. And how I went to see my father in the hospital and how I couldn’t even stand to look at him because I was so angry with him (though I don’t know why I was angry, but I’m pretty sure that anger was a normal emotion for a 15 year old to feel when they see a parent lying in a hospital bed hooked up to monitors.)

And then this took me to thinking about my father’s health and his more recent heart issues and my grandfather’s recent bypass surgery…and so on.

And that all flew through my mind in a matter of seconds, like a flash of lighting. And then it was gone.

And it all started because of a broken hair brush.

Written by nicolemarie

August 18, 2007 at 11:08 pm

Posted in Dad, life, personal

tomorrow

with 9 comments

Tomorrow I will be 30. 

It doesn’t feel like such a big deal, really.  Just another day. A day like any other.  It’s just a number, right?

You know what feels like a much much bigger deal to me?  This blog.  Seriously.  I’m proud of myself for doing this.  It’s something I said I’d do, but I was never quite sure of whether or not I’d follow through with it.  And there were times when I didn’t want to continue with it.  Times when I really didn’t get the point of all this.  When I thought it was all a big waste of time.  When I felt that there was no one out there who cared.  But I kept at it.  And many of you kept reading. For this, I thank you.

210 days.  That’s how long I’ve been at this.   It feels like this whole countdown began just yesterday and somehow yet it seems like a lifetime ago.  I’m kinda glad it’s over. This while countdown this, that is.  Not the blogging.  That will continue.

While in just one day (one hour, really) I turn 30, in two days I get to forget all about turning 30 and just be 30. And I have this sneaky suspicion that being 30 is going to be a whole lot better than being 20.  At least for me.

Here are some things I’ve learned over the past 210 days.

  1. 30 is just a number
  2. That it really doesn’t matter what I have or haven’t done by the time I turn 30
  3. That I really have absolutely no clue what I want to be doing with my life (career wise) and that I’m totally okay with that
  4. that I really love to write and while I might not be a future novelist or even an essayist I’ll keep doing what I’m doing because it is who I am and it makes me feel good
  5. that I’ve gone through a whole lot of crap in my short 30 years and that I should be damn proud of myself for having gotten through all if it
  6. that there is so much more ahead of me and that I should be excited about all that is to come
  7. that I should learn to take more risks
  8. and that I shouldn’t be so afraid of failure
  9. nor should be afraid of success
  10. That I am who I am and that’s just fine with me

And to tie up some loose ends…

No, I haven’t joined the perfect boob club, nor am I going to get another tattoo.  Well, at least not yet (with regards to both of them) and not for my 30th birthday.

Did I forget anything?

So I’m off to enjoy the last hour of being 29 (finishing up a game of Scrabble with my husband and mother-in law.  I couldn’t think of a better way.)

Until tomorrow.

t-minus 1 hour (Buenos Aires time). 

Written by nicolemarie

August 8, 2007 at 11:19 pm

disharmony

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Since we got back from our trip to the United States I’ve had this tingling feeling in my fingers and aching pain in my hand and a severe tightness in the upper right side of my back.  I figured I’d slept wrong on the plane and pinched a nerve somewhere, etc.  But it wasn’t going away.  In fact it was getting worse.  After two nights of really shitty sleep I decided to take some action and get this problem taken care of.

So what did I do?  I paid someone to torture me.  Well, kinda sorta.  Yesterday afternoon I had the deepest, most painfulist massage that I have ever had. That I think anyone has ever had.   I’m not going to sugarcoat it.  It hurt.  It really hurt.  But as much as it hurt, it also felt really really good.  And when the pain subsided there was a sense of relief and complete relaxation.

Towards the end of the massage the masseuse began to tell me how the vertical pathways of energy that run through my body are completely blocked and how my health will only deteriorate if I don’t open them up.  She also mentioned something about my chakras and how they are out of alignment.  And something else about harmony and how I don’t seem have any.

Not sure if I buy into this whole energy-chakra-harmony thing. 

Last night my husband got home earlier than normal and while he was bathing the kids I went to lay down for a minute or two.  I feel asleep.  It was 6:30PM.  I woke up this morning at 6:00AM.  After 12 hours of sleep I felt better then I had in days. 

Oh, and in case you’re wondering, the tingling in my fingers and the aching in my hand seem to be gone.  For now, at least.

I’m off to Uruguay tomorrow to enjoy an early birthday present.    Only 5 days to go!

Written by nicolemarie

August 4, 2007 at 10:12 pm

Posted in health, personal

one week to go..

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7 days to my birthday.  And I have absolutely nothing to say on this topic.  All I can do is tell you to reread this entry I wrote a little while back.  It looks like it may just hold true for this year as well.  Not surprising.

So in case you couldn’t tell I’m in a kinda shitty birthday mood…bah humbug.

And as if things couldn’t be any crappier, I have this huge annoying pimple that has decided to locate itself smack in the middle of the bridge of my nose, and it’s really really begining to piss me off.   

Written by nicolemarie

August 2, 2007 at 8:49 pm

Posted in birthdays, personal

borders

with 6 comments

Every time we return to the United States, whether it be for a short week long visit like this one or a longer visit like the one we take between overseas assignments, it always feels like all we do is shop and eat. It probably feels that way because, well, we do spend an awful lot of time shopping and eating.

That, and the occasional television watching. The latter of which is usually accompanied with an overwhelming sense of amazement at how many new channels there always are and how little there actually is to watch. Which doesn’t seem to stop us from watching countless hours of really really bad television. Somehow I actually find myself missing the crazy Argentine variety shows because at least they’re completely outrageous.

Getting back to eating and shopping.

We’ve definitely been able to curb the whole eating thing this time around – thankfully. During out last long trip back to the United States my husband and I both found ourselves overindulging and gaining a whole lot of weight. Which, after two years, we’ve seemed to have finally rid ourselves of.

Believe it or not those few food items that I thought I had to have, that I though I truly and dearly missed and couldn’t wait to get in my mouth, they’ve all been quite disappointing. I think it’s that whole building something up in your mind thing to a point at which what you remember and what actually is are not the same. And what you remember is always oh so much better.

There is one thing that I didn’t think I missed, or more accurately never thought about whether or not I missed. And that’s book stores. Even mega bookstores like Borders. A store filled with every type of book. Rows and rows of bookshelves filled with books about anything and everything.

This comes as a slight surprise to me since I’m not actually an avid book reader. I read books from time to time, mostly nonfiction, but I tend to only have time for short items like magazine articles, online articles and blogs.

Today we went to a Borders. I wanted to pick up a potty training book. Specifically, I wanted to pick up a book on potty training boys, since this whole boys thing is a complete mystery to me and I’m at a complete loss for how to handle potty training. That and because I lent the potty training book that we semi-used for my daughter to a friend and she has yet to return it and I can’t recall who it was that I lent it to so I can’t even call and ask for it back.

So as I said, we went to Borders and I was in search of a potty training book for boys, which by the way I didn’t find. I did find a potty training book, four of them to be exact, but I didn’t find a boy-centric book. While I was heading over to the Parenting section of the store I couldn’t help but be distracted by every shelf and table lined with books. I must have looked like a deer caught in headlights or like a kid in a candy store. I imagine I looked quite similar to what my children looked like when their grandparents took them to Toys-R-Us and introduced them to the over abundance that is the American toy store.

All I wanted to do was sneak away from my husband, kids and parents and slouch down into one of those leather chairs and loose myself in a stack of books. I could have stayed there all day, browsing the shelves, running my fingers down the unbroken spines of countless books, flipping through the crisp pages, perusing the images in random coffee table books, reading and thinking and then reading some more.

Shopping online at Amazon.com just isn’t the same.

Written by nicolemarie

July 27, 2007 at 12:08 am

Posted in life, personal