Avoiding Crisis

Archive for the ‘parenting’ 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.

Written by nicolemarie

September 17, 2008 at 12:30 pm

some things you just gotta to share

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so a few months ago, one Saturday afternoon, while i took my daughter to a birthday party, my husband thought he’d see what would happen if he put my son in underwear as opposed to the very reliable and always trusty bob the builder pull-up that he normally sports. I just shook my head, told him to have a blast, and that I’d be back later. Seeing how I did 90% the potty training for my daughter, i just chuckled to myself, realizing that he had absolutely no idea what he was getting himself into. When I returned home later that day, Owen was fast asleep, with a diaper on, and my dear husband had come to grips with reality – that and 5 wet pairs of underwear that apparently my delightful son had gone through in the course of 15 minutes. We didn’t really bring up potty training again for a while.

Recently, however, Owen has shown a bit of interest in the whole potty process. That, and I think that we’re bordering on being pretty darn over the whole diaper changing thing. He wants nothing to do with the little potty we have, aside from put his foot in it, fall over and laugh. He’s gone straight for the big potty. He now pees in the potty before bath almost every night and from time to time, if we get him at the right moment, he’ll go during the day – but only if you ask him and only if he’s in the right mood. ‘Cause, jeeeez louise, if he doesn’t want to go, he sure let’s you know it with a big nooooooooooooooo and this kinda sorta talk-to-the-hand thing he’s got going on.

Poop is a whole different beast which usually involves him hiding behind something or creating a barricade of toys in front of himself and squatting down and shouting BYE while waving at you. And, if you even try to come near him or even begin to ask whether he’d like to use the potty, you are quickly cut off with a big NO and that talk-to-the-hand thing, which is always followed by a very loud BYE and wave, just in case you forgot that he wants to be alone.

I never push the issue. What’s the point, really. I don’t want to fight with him about it. I keep saying, when he’s ready….when I’m ready (’cause as anyone who’s potty trained a toddler knows, its a whole lot of work!) Maybe this summer.

Today. Today…I think we had a break through. Though I’m not going to get my hopes up or anything. Read the rest of this entry »

Written by nicolemarie

August 29, 2007 at 9:56 pm

perezoso and a huge gorilla

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We just came back from seeing a live show of Lazy Town with the kids. It was a lot of fun.

Obviously, being that we are in a Spanish speaking country, the show was all in Spanish. Our kids tend to watch the show in English since our TV is set to SAP about 60% of the time. Nevertheless, my daughter, who I’d say is pretty close to being compltely bilingual, reassured me and my husband that she would translate for us and let us know what was going on in case we were lost. Seeing how, according to her, we don’t speak Spanish like she does. We thanked her, said that was a very nice gesture, but it probably wouldn’t be necessary.

So on the way home my husband and I got to talking about the meaning of this one word – perezoso.

Him: What is the definition of perezoso?
Me: Lazy, I think.
Him: I thought lazy was flojo.
Me: No, I think flojo means something more like loose or flabby.
Him: Hey, Abbey, what’s perezoso mean?
Her: Perezoso is the word for a big huge gorilla (she says matter of factly)
Him: Interesting, a gorilla.
Her: Yes Dad, a gorilla. A big gorilla.
Me: Are you sure?
Her: Positive (she says with a huge silly grin on her face).

Where does she come up with this stuff?

edited to add:  apparently I got it wrong.  According to my 4 year old, she didn’t say “big gorilla” she said “giant gorilla, sleepy head.”  Just had to clarify that.

Written by nicolemarie

July 8, 2007 at 9:18 pm

sick and tired…and tired…and…

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well, really freakin’ tired.

On Thursday my daughter woke up at 3:30 in the morning with a fever. Not a crazy high fever, but enough to make her body feel like a furnace (and I know this because she had first woken up around 2:30 AM and begged me to stay with her until she fell back to sleep. And me, being me, and being lazy and being very tired, decided it was just easier to fall asleep with her in her bed.)

She stayed home from school and aside from the 60 minutes I spent at the gym, I spent the entire day with her making sure she was okay and entertained. ‘Cause, that’s what mothers do, right?

So yesterday I felt a little crappy. I woke up with a sore throat and a general sense of malaise. And then today, again the same thing. I guess I’m just fighting off whatever virus caused my daughter to have a fever and my son to have a bout of explosive liquid poop. Yup. Things have been fun around here lately.

So this morning I tried to sleep in a bit. My husband, being a very wonderful and understanding man, tried his best to make this happen. If only it wasn’t for that 4 year old of mine.

Her: Mommy? Mooooooooooooooommmmmmmmy? When are you going to get up?
Me: Not now. Leave me alone.
Her: Why don’t you get out of bed?
Me: I’m not feeling well. Please let me sleep a little bit more so I can get better.
Her: But I want you to play with me.
Me: Do I try to get you to do things that you don’t want to do when you’re sick?
Her: Uh….
Me: So mommy would really like it if you would go play with your brother, okay?
Her: Moooooooooooooooommmmmmmmmmmy? When are you going to get up?

Yes, this is how I started my day.

Mothers really aren’t allowed to get sick, are we?

Written by nicolemarie

July 7, 2007 at 7:56 pm

besitos y abrazos*

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*hugs and kisses

Every morning I take my kids to school. At the doors of their respective classrooms they are greeted by their teachers with open arms. Hugs are bountiful. From the teachers and from their classmates.

My daughter is so accustom to this warm and very loving reception that she will not leave my side until she is greeted by one of her teachers.

I just came across this article the Washington Post. We talk about this issue a lot in our house. Among my expat and diplomat friends this is a common topic for discussion.

My children are growing up — first Peru and now Argentina — in an environment that encourages besitos y abrazos. Upon greeting someone and again when saying goodbye it is expected that you kiss and hug. As a result, if you were to meet my daughter, she’d most likely give you a kiss on the cheek when she says hello and a hug and a kiss when she was to say goodbye. She does this with adults and with her friends. It’s custom. It’s expected. It would be strange for her if she didn’t. My son, upon hearing the phrase, “besos y abrazos” will do the same. We encourage this behavior. I don’t see anything wrong with it. It’s how I greet people I meet.

That being said, I do worry about what will happen when we return to live in the United States. I worry about the first day of school when my daughter goes to give her teacher a hug and at the end of the day when she says goodbye to her friends.

We haven’t yet broached the issue with her directly because, well, she’s only 4. And because we still have a bit of time before she’ll be attending a school in the United States — it will be at least another year and more likely 3 more years. Hopefully, by the time she does attend a United States school she’ll be old enough to understand the difference between cultures and we can explain to her how what is accepted in one country is not in another.

But still, what’s so wrong about besitos and abrazos.

I guess such is life when raising a third-culture kid.

Written by nicolemarie

June 22, 2007 at 9:45 am

childish behavior

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I stooped to the level of a 4-year-old this evening. I dumped an entire cup of water on my daughter’s head.

That wasn’t very nice of me and she didn’t deserve it; she only kinda sorta deserved it, that is, if we lived in a parallel universe where it’s okay for mommies to act like children.

We have this argument every night about how much water she can drink before bed time. She’s a very very deep sleeper and doesn’t tend to get up in the middle of the night if she has to pee. Every now and again she has an accident and we deal with it. Okay, I deal with it as she walks around her room half asleep clutching her blanket and dolly wondering why on Earth it’s taking so long to change the sheets. But we are proactive about this in that we limit how much fluid she has after dinner.

So tonight I got home from a birthday party with my youngest, who was completely jacked up on sugar and very very tired, and immediately had to deal with the gazillion questions from my 4-year old. What kind of party was it? Was there a show? What was the theme? Did you let Owen eat candy? How much candy did he eat? Shouldn’t I be allowed to have candy since he ate candy? This really didn’t get things started off on the right note. Read the rest of this entry »

Written by nicolemarie

June 7, 2007 at 10:29 pm

is mommy getting a pink-slip?

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While I’m working on finishing up some draft posts of a serious nature, I decided to take a break and decompress with some humor, or at least some attempt at humor.

I came across this post the other day. So I decided I’d see how it played out if I applied it to my current position as MOTHER.

Here’s the deal, if you answer yes to 3 or more of these questions then you might want to think about updating your resume and looking for another job. Read the rest of this entry »

Written by nicolemarie

May 31, 2007 at 11:06 am