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Autism Awareness: Today, I’m Just Mad

Here we are the day before tax day and the midpoint of Autism Awareness month, and I find myself over here just feeling incredibly mad.

There have been some fascinating news items and blogosphere controversies surrounding autism this month.  Some excellent dialogue has taken place and I believe much has been accomplished in the arena of Autism Awareness.

Yet today, I am just angry, pissed off and flat-out livid toward this exhausting developmental challenge called Autism.

I am sad that a mother in my child’s school promised a playdate within actual earshot of my child and then just never called back or returned my phone call.  She doesn’t have to listen to the endless questions about why she never called and why that boy must not want to play with my child.

She doesn’t realize that this was the VERY FIRST playdate that he has been invited on since we moved to this town in August of 2009.  This mother used to work in an autism clinic!  I’m just mad and I sure don’t want to see her in the school halls anytime soon.

I am world weary of fighting with my insurance company to somehow coerce them to pay for at least a fraction of my son’s treatments.  I am almost driven insane by the cost of summer camps that cater to children on the autism spectrum.  As if we haven’t paid enough out of pocket throughout the year for supplements and non-covered treatments, now summer comes and we have miraculously find more cash.

Yes, I am sure there are some perfectly grand camps out there sponsored by Easter Seals and the like, but my child needs intense social skills work and let me just tell you that anything associated with social skills is ridiculously expensive.

I am so sick and tired of friends and relatives who hint, or actually come out and say, that my son’s autism was caused by something I did or didn’t do during pregnancy.  Or that his difficulties stem from me not loving him enough during infancy.  Or that perhaps he has a completely different disorder that they have vaguely heard about on the news but has absolutely nothing to do with his challenges!  Google it people!  Don’t throw disorder names around when you have absolutely NO IDEA what you are talking about!

I’m relatively pissed off at my child’s teacher who pulled me aside after Edward’s solo to tell me that she was extremely proud of how far he had come this year, but then looked deep into my eyes, grabbed my arm and reminded, “But you know he still has a long way to go.”  No sh** woman!  You think I don’t know that?  But thanks for the reminder.  Made my day.

I usually try to end my posts with an uplifting, hopeful comment or message.  Today, however, I can’t see the light at the end of the tunnel or the pot at the end of the rainbow or the promise of my child garnering a great engineering or programming job at the end of an Asperger’s diagnosis.

Today, I’m just mad.

Posted on 14 April '10 by , under Autism Spectrum/Sensory Processing.

13 Comments to “Autism Awareness: Today, I’m Just Mad”

#1 Posted by Niksmom (14.04.10 at 10:37 )

You are not alone today! I’d be fuming at the teacher especially! WTH? Does she think you go through life with rainbows and rose colored glasses? (Sorry, spare me from well-intentioned teachers!)

Anyway, I won’t rant here about why I’m mad today, but I wanted you to know you’re not alone in the feelings. Sending good thoughts your way. 🙂
.-= Niksmom´s last blog ..DNS Editing Deployed =-.

#2 Posted by Patty (14.04.10 at 11:45 )

Oh, boy, I can so relate. I am so sick of all of it. And I would be mad at that mom too! I don’t really have anything to say that would make things better, unfortunately, just that I am mad, too. So mad that my kid has to go through all this. Mad that other people can’t seem to understand.

Though my family is pretty understanding, they still just don’t get it sometimes. And I hate other people (who know NOTHING about kids or their development )who diagnose my kid. Makes me want to scream!

And that teacher? She sucks!
.-= Patty´s last blog ..note to my neighbors =-.

#3 Posted by Jen (14.04.10 at 12:27 )

This is the thing with our children, we face constant battles to get them what they need. Location does not change that, we face the exact same problems you do so I completely understand. The first part of the teachers comment was lovely, she should have left it there and let you enjoy the moment. I am so sorry to hear you are feeling like this right now, I hope writing about it has helped. Big hug of moral support for you:) Jen.
.-= Jen´s last blog ..Go on, say ‘WOW’. =-.

#4 Posted by JoyMama (14.04.10 at 13:40 )

So many barriers, so much cluelessness on the part of so many people! Big hugs.

I’m thinkin’ that the non-playdate-mom and the teacher in particular should know better. Grr. Friends and family, that’s a whole nother can of worms and an ongoing education process — we don’t tend to hear much blame-game ourselves but keep having to talk inlaws down out of their enthusiasm for various miracle cures they’ve read about or seen on TV. Bah.

I’m mighty proud of Edward for his solo, from afar!
.-= JoyMama´s last blog ..Many =-.

#5 Posted by hellokittiemama/MT (14.04.10 at 14:42 )

Mad is often an understatement in how I feel. Yes, I can so relate. Hang in there!!!!

.-= hellokittiemama/MT´s last blog ..Simply Organic Banana Bread – Gluten Free Review =-.

#6 Posted by Tess (14.04.10 at 15:25 )

I would be mad too. Sometimes teachers just dont get it. I love summer because I dont have to deal with teachers who think they know what’s best for your child.

#7 Posted by Elle (14.04.10 at 21:29 )

So many people just don’t get it. They think they are being helpful but they aren’t and the woman that promised a playdate is just clueless. I wouldn’t want to be her the next time you meet.

J-Man has food allergies and sensory issues and there are certain family members that just want him to try eggs or peanut butter and push him until he’s uncomfortable.
.-= Elle´s last blog ..What The Hell Wednesday~27 =-.

#8 Posted by Carla (14.04.10 at 22:52 )

so wish we were closer.
.-= Carla´s last blog ..Title needed…. =-.

#9 Posted by Chaseblogger (15.04.10 at 11:21 )

Oh man, I can’t think of how I DON’T relate to this. I’ve encountered a variation of one of these things many times and my son isn’t even in elementary school yet. My aunt stopped by unannounced once last summer – which through my son for a loop. She kept making side comments about how he sure doesn’t seem to listen to me very well. . . then, my son wanted to ride in her truck and she blew it off by saying, “how about next time, honey? ok?”

A couple months later she came by unannounced again. He was ready for his ride. She forgot and told him no again. And left me to deal with the explosion.

I was so pissed at her unwillingness to even try to understand him or what I go through everyday. Then I called her and told her to never stop by unannounced again.
.-= Chaseblogger´s last blog ..Autism and marriage Day 2 – Date Night! =-.

#10 Posted by Adoption of Jane (15.04.10 at 11:40 )

Be mad. I am too. I’ve been trying to get mothers in my sons class to commit to something, anything, jeez… hello.. we are all going through the same things? Isn’t this just as important to you and your family??? And don’t get me started on the costs of Autism. Freakin’ ridiculous!

So today we can be mad together!

Looking for a better tomorrow!

Much Love, J.

#11 Posted by kim (15.04.10 at 19:58 )

I agree with all the comments and the truth is the mom that has yet to make a playdate with Edward is missing out b/c he is an AWESOME kid
and you are one great mom
Their loss for sure!
Miss you
Much love
.-= kim´s last blog ..Spring Break randomness =-.

#12 Posted by mrsbear (16.04.10 at 15:19 )

Sending hugs, my friend. The play-date mom sounds like she should’ve known better. And the teacher could probably use some sensitivity training. There’s greatness in Edward, he’ll get there.
.-= mrsbear´s last blog ..Are You Saying Words? Spin Cycle =-.

#13 Posted by Just Writing (21.04.10 at 01:29 )

Mad, sad, tired (sighs), what else did I miss? Forget the end of the tunnel, just get me through the day.
.-= Just Writing´s last blog ..A Boy And His Shoes =-.