Avoiding Crisis

when HFA stand for Hellacious Fight Ahead

with 3 comments

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

3 Responses

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  1. Wow, this is an incredible post – very well written and educational. I am so sorry you are having to fight so hard for the services you deserve, and I wish I could do something.

    everythinginbetween

    September 17, 2008 at 12:48 pm

  2. Hi Nicole!

    This was a beautifully written note – you are going through so much with your baby boy. Although I don’t believe you would, don’t let anyone stop you from fighting for what you think is right. What else is there to fight for, you know?

    In the long run, this will make your whole family stronger and you’ll all have that awareness of what’s a big deal and what’s not. For now, keep breathing!

    A big hug (from La Paz, Bolivia now)
    Besitos
    Shelley Alvarez

    Shelley

    November 24, 2008 at 9:46 pm

  3. […] September 2008 I wrote…when HFA stand for Hellacious Fight Ahead […]


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