Tuesday, November 23, 2010

Most of them just don't get it

I'm coming to the annoying and in my face realization that most people just don't get Asperger children, especially mine.  Even health care professionals, including the doctors that specialize in autism don't truly understand an Aspie.  As a parent, I go out of my way to inform every doctor that my son has Aspergers and then attempt to translate how this affects my child and ask them to try to tailor their care to meet his needs.  However, only two doctors so far has understood, or at least attempted to treat my child with an open mind and creative techniques to make his visits traumatic free as possible.  To these two doctors, I have expressed extreme gratitude and made sure they knew just how grateful I was for their efforts, understanding, and exceptional skills.

You may be wondering, where am I going with this?  I ask myself that with just about everything.  LOL  I think I'm not really going anywhere with it.  I just need to vent.  Especially after a day like today, which is becoming a norm.  I took my son to see the ophthalmologist this morning.  They wanted to dilate his eyes which had been done a few months earlier by an optometrist.  I understand the difference between the two specialties.  But quite frankly, I felt it was unnecessary to subject my child to the stinging dilation eye drops once again because he always has a complete mental and physical breakdown when it comes to those drops.  I told the doctor my concerns but they just disregarded my words as though I either didn't know what I was talking about or that I am babying my child (which I've been accused of by his school psychologist). 

So, they put the eye drops in his eyes as he was screaming and begging them not too and clutching his eyes in fear and crying uncontrollably.  They forced the eye drops in and then the emotional breakdown turned to a physical breakdown just as I had warned them.  He vomited all over himself and the chair and the hallway.  And, as usual, I was given a few paper towels to clean up the mess myself instead of them helping out.  I was pissed beyond belief.  I wanted to shove my foot up their asses, but of course, I controlled myself and my reaction because if I don't remain calm then my child falls apart.  We barely made it through the rest of the doctor visit, but we did make it and that is what counts.

I immediately drove us home and have been doing my best to try and calm my nerves.  I found some emesis bags for sale online, which I purchased without hesitation.  I think that having an emesis bag on the ready will help us tremendously when we are outside the home.  My Aspie vomits in the car, at the grocery store, at the doctor's office....everywhere.  The littlest things make him vomit--smells, sights, emotional distress, even needing to defecate.  I'm sick and tired of pulling daily janitorial duties.  I am hoping these bags will help.  My comments may sound harsh but you try cleaning up spewed vomit several times a day for months on end.  Perhaps then you will understand my frustration and distress, or maybe you won't. 

As for his school psychologist, she annoys me.  She is convinced I baby my child because he's an only child.  I just smile and nod when she spouts off her judgmental ignorance.  She doesn't take care of my son 24/7.  She doesn't even understand his needs.  If addressing his emotional outbursts with therapy and at home intervention is babying my child then so be it.  It's better than ignoring his emotional distress which is her solution to all of his problems.  During the meetings I've had with her she's clearly displayed her ignorance of Aspergers.  I've given her and the school extensive information on Aspergers and even highlighted areas (along with side notes) of the aspects of Aspergers that strongly apply to my child.  However, I am starting to doubt they have taken the time to read any of the information.  The irony!  Education specialists that refuse to educate themselves on one of their student's special needs. 

I'm also sick and tired of people that know nothing about Aspergers assuming that it only means my child is lacking in social skills.  It means a million and one things more.  It's multi-faceted.  I try so hard to educate others that interact with us but so few people get, and so few more really want to take the time to understand since it is something they don't deal with on a daily basis.  I'd rather someone not ask if they really do not care.

As you can tell, I'm in a foul mood.  This morning pushed me over the edge.  I'm still angry.  I hope tomorrow is a better day.  We shall see as it's another visit to a different medical specialist.  *sigh*

3 comments:

  1. Dealing with the public (schools, health care providers that believe there comes a day in your education when you know everything, etc.) is always hell when you've got a kid within the autistic spectrum. I feel your pain, after years of fighting with schools and running through medications (some which only made the problems worse) and being told my own borderline Aspie couldn't have Asperger's because he's "too happy" - in other words, he expresses over the top emotion, instead of being an emotionless robot, which some people seem to think is the hallmark of an Aspie (but like you say, it's multifaceted). Stay strong, hon. And know that you're not alone.

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  2. I know what you mean about people not "getting it." My daughter's teacher knows she has celiac, and yet they gave out candy that contained gluten as a "counting" medium, and when my daughter pointed out she could not touch it, the teacher told her to "turn it over without touching it." Um...you wouldn't give someone with a peanut allergy a bunch of peanuts would you? Geez.

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  3. Wow! I think the public school system needs to not only educated it's staff about different diseases and disabilities, but also they should set up a program to educate students about these issues so that the kids do not grow up to be ignorant like the majority of the population is now.

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