Avoiding Crisis

Posts Tagged ‘autism

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

the one in which i tell you about how my world has changed….

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you see, many many months ago i began to wonder. 

why was he always lining things up?  why were the tantrums so intense and so out of the blue?  why did he have to always be the one to the open and close the doors?  all of the doors.  why did he repetitively open and close the doors?  why did he rock back an forth in his seat when he was busy concentrating?  why didn’t he always respond to his name when he was called?  why did he sometimes zone out?  Why wasn’t he talking like the other kids his age?  why wasn’t he playing with the other kids?  why was he alone, content, in a corner, reading a book, but not really reading a book, just staring at the pages?

i talked to people about it.  to my parents who had dealt with their own developmentally delayed child.  to my friends who had kids the same age as mine.  to teachers, doctors, therapist.  I told them about his behaviors, about his quirks.  They all told me that he was smart, that he was adorable, loving, and perfect. 

And he is. smart, adorable, loving and perfect.

But, he’s also something else.  And what that something else is I don’t quite know. at least not yet.  

here’s what we do know.  after a week of testing we know that he has the receptive language of a 4 year old and the expressive language of a 2 year old.  that he has bilateral hearing loss at 500 hertz, which they tell us, if you are going to have a hearing loss this would be the frequency to have it at.  That he has a social communications deficit — apparently he can not take the perspective of another person and does not recognize non verbal social cues — a delay in both verbal and non verbal speech and language and he has behavioral issues related to his inability to mange/control his emotions. 

We were told that he would need speech and language therapy and that we should be looking into applied behavioral analysis. 

We heard a lot about the spectrum.  the f-ing spectrum.  how our son, our precious little boy, may very well be on the spectrum.

autism. pervasive development disorder. aspergers. the spectrum.

i look at my little boy differently these days.  i cry a lot.  i freak out.  i panic.  i cry.  he just goes on as if nothing has changed.  it’s better that way.

i deny.  i tell myself that they are wrong.  that all this worrying is for naught.  that Friday’s phone call to the doctor will be nothing more that a casual chat where she tells me that everything came up fine.  that there really isn’t anything to be concerned about.  that her initial observations were way off. 

i cuddle him up in my arms and tell him i love him no matter what they say.  that he’s my little boy.  that he my wonderful, adorable, perfect little boy.  and then I tell him that mommy is going to make everything all better. 

and then i remember the tantrums and the repetitive behaviors and the sensory issues. 

i lie. i can’t fix this.  there is no magic bullet.  i don’t even know where to begin.

this is something that happens to other people.  not to us. not to my little boy.  haven’t i already fought enough demons for all of us?  Haven’t I already had enough therapy for us all?  isn’t one family member with mental issues enough?  haven’t we filled our quota?

And then, the guilt.  It’s my biology, my genes, my fault.  He picks at his face when he gets nervous or frustrated.  Little teeny tiny scratched from his own nails, caused in his sleep or during a tantrum, become raisin sized scrapes, the result of his own nails.  He doesn’t even know he is doing it.  “mommy. look. boo boo.”  I know he’s doing it.  

whatever it is. whatever all those tests show.  we will find out on Friday. 

whatever it is.  my world will never be the same.

this has to be the longest week of my life. 

Written by nicolemarie

February 20, 2008 at 9:39 pm

Posted in crazy kids, crazy mommy moments

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