My Response On Suzanne Wright's (of Autism Speaks) Comments

I am a little late getting to the party with this post. This has been going on for about a week now, so I apologize for not getting this posted sooner. Life happens y'all!

A few days ago, Suzanne Wright of Autism Speaks wrote Autism Speaks to Washington-A Call for Action (check the link and read it if you haven't, I'll wait *wink*).  Now that I've read it and have read some responses, I feel like I have some responses of my own that I should write.

My initial knee-jerk reaction was not so chipper. I felt like a lot of the responders, offended and sad that this is the way that Autism Speaks chose to speak about our kids, and jumping up and down and saying "that's not our autism!". My son is a happy boy who makes me smile everyday. Makes me laugh constantly. Makes me happy to travel down this road together on his journey with autism. BUT, then I had a light-bulb moment after reading a post by Autism Daddy (one of my favorite blogs). He had a different point of view.

So now, after reading some things and taking time to actually think on the matter, I actually agree with what Suzanne Wright said in her post. No eye-rolling, tomato throwing, or booing yet y'all, just hear me out for a minute.

This is not our autism now, but is certainly was our autism in the beginning.

We had a little boy we couldn't reach. We went through sleepless years. We were on waiting list after waiting list. We spent hours coping with meltdowns that we didn't understand the reason for. We went through a time where I was terrified of taking him out in public anywhere for fear that he would get away from me or fear of a major melt-down and screaming fit. We had to use a leash when we went out in public. We had to basically tie him into his car seat. We put huge heavy-duty locks on the doors and alarms on the doors because we went through an elopement episode that was scary as hell, and we made a locking pantry cabinet, and we locked the refrigerator with a bike chain. We cannot afford to go to a DAN doctor because it would be an out-of-pocket expense, not to mention the travel expenses to get there, and our insurance won't cover most of his therapy outside of school. And JB just mastered the potty this summer--at 7 years old! That means I went though a good 4 extra years of poop!

And lets not forget, that for a while there, I was all alone with this. Just me, JB, and baby (at the time) Jenna. I am also divorced. Happily re-married now (and damn lucky for it, I know), but divorced none the less. So yes, that is also something that Suzanne Wright mentioned in her post. Statistics on the divorce rate of parents with a child with autism are staggering. Its not pretty, but it is the truth.

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

And as I have mentioned before, the world in 10, 15, and 20 years from now scares the hell out of me because of all of our kids that currently have autism. What happens to a society where 1 out of 50 (it will be more by the with the way the numbers are going up) people can't function on their own in society? Can't cross the street safely by themselves, make a PB&J, or communicate their needs to others??

Yes, Suzanne Wright, this was our autism.

Fast-forward to now... Yes, we still have our days from hell. Yes, we still have the locks and alarms on the doors, and the locks on the food. JB is still not speaking. So yes, we still have days where that is our autism. But we have a child that we are starting to reach, who is engaging with us more and more every day. Who is generally a happy and healthy kid. And that gives me hope and it has brought me back to life and out of just existing.  BUT, Ms. Wright was trying to make a point to make lawmakers and others--to allow them to see the real and very often ugly side of autism. The despair and the hardships that are the truth for many families who feel like they don't have a voice because, for the most part, what people see in the media about autism is the feel-good stories. The stories of recovery, the stories of some awesome kiddos overcoming the odds of autism and succeeding. And we do need to see those stories. BUT, we don't see the other side in the media. This is a real side of autism that needs to be seen, because those who live with this kind of autism are those who need the most help and support.

Hugs to all of my fellow autism parents!

I Am Now One of *"THOSE"* Parents...

Before you even read this post, I will tell you there is some language...can't help it today, it's how I felt at the time and I want to tell the story how it really happened...soooo, yeah...it includes cursing. You have been warned! 

Wow...all I can say is...WOW! And shake my head as I sit here to write this. I always said that there was no way--as in no way in HELL!--that I would ever be one of *'THOSE'* parents. No way! Not me! Can't happen. Well folks, I'm here to tell ya...it CAN happen, and it can totally happen to you!! 'Cause it sure as hell happened to me. AND I am so hugely embarrassed to tell y'all about this, but I hope that by doing so I can help you not panic..and completely freak out...and have a total 3-year-old meltdown like I did. (And today, this has nothing to do with autism.) I so could have used one of these:

**FULL DISCLAIMER: What I am about to tell you was totally not funny at the time, but now that I have had time to process and live through it and everything, I actually find it a little funny. I have to look for the humor in these situations, because...well...honestly, if I don't laugh about it, I'm gonna cry about it. And crying about it leads to those little temper tantrums and a very unhappy mommy. And besides, isn't laughing a lot better than crying?? So, just thought I should put that out there for ya. If you don't like to laugh, my page probably isn't for you...just sayin'. Sooo...SMILE and be happy y'all!

OK, so I know you're wondering what could be so bad. I'm stalling...I know. But the ONE thing in this world that I swore to myself I would never do...I did. Its terrible. I FORGOT MY KID. There I said it...*sigh*. Holy CRAP!! I ACTUALLY FORGOT MY KID!! Poor Ressie...I forgot her at her pre-school. *Shaking my head* I am so ashamed. I totally panicked. I called her school--and then I lied on top of everything else!! I lied and told them I had a flat so that I didn't have to actually admit that I FORGOT MY OWN CHILD! A cloud of shame will follow me 'Pig-Pen'-style for a while for this one. WOW! And so, here's the story:

I was having a great day! Went and did my first Zumba video this morning with the bestie. Now when I say 'did', I mean 'watched'. Because we are so terrible at working out, we had to actually sit and watch the how-to section at the beginning of the video to see how hard this was going to be. And we did so while we were happily lounging on the couch drinking coffee and laughing at the totally hot Zumba girls making everything look so damn easy! Really?! Gah!! Grr...anyways, that's a whole other topic. So we watched, and decided we could go on, and the next morning we had 'work-out time', we would actually get up and do the steps they were showing on the video (small steps, right?). So ok, work-out, check *wink*.

So then I go to meet up with another autism mom from Big T's Buddies and ride down the road a little ways to meet up with a mom who is new to our group. This was the first time I had met the new mom, and I was excited and so was my friend. We get there and everything is going great. We have lunch, talk, and learn about each others' kids, and hang out and talk some more. Then, we are all getting antsy about checking the time since we have to pick up our kiddos. So she asks me what time I have to pick up my kids, and I say 3:00. Which is true, for JB and Jenna, my big kids. But poor Ressie. I FORGOT HER RIGHT THERE! Ding, ding, ding!! Warning bells shoud have been going off right there!! I am supposed to pick Ressie up from her pre-school at 2:30! So me and friend and friend's kids load up and we're trucking along back to Fairfield. Drop off friend at her car. Check the time, and then I'm all like, "Self, you've got plenty of time before you pick up the kids, let's cruise through Sonic and get a drink". And I'm all, "great idea Self"! Cool...here we go. Get the tea, "mmm...good tea". Check the time...still good! Then while I'm sitting there enjoying my drink in the awesome quiet (while jamming to "Stranglehold"

--that's totally "quiet time" for me as there were no screaming kids in the car at the time), I decide to call Butch and tell him about my awesome day. So I do, and we're talking. So I put him on speaker, and pull on out of Sonic so that I can meander my way to the school. Then he has to go, so we say our good-byes, and hang up. Crank the music (good tunes must be listened to at the proper level to be appreciated, after all), and then I think to myself, out of the blue, "where's Ressie?". HOLY #?*$!!!! *BLEEEEEEEEEEEEEEEEP*!!!!!!! (I can't actually bring myself to type what I said, my Mamaw is probably gonna read this!)  HOLY #$@&!!!!  I FREAKIN' FORGOT MY KID!! OH SHIT OH SHIT OHSHITOHSHITOHSHITOHSHIT!! Literally....I went through all of that, and then into panic mode. HOLY CRAP I REALLY FORGOT RESSIE!! I'M A COMPLETE ASSHAT FAILURE OF A MOTHER!!! OHSHITOHSHITOHSHIT!!! So then I think, "OK, calm down...you gotta call the school before they call you". So I call, and out comes my lie..."Hey, this is Shannon, I'm soooooo SORRY!! I had a flat, but I'm on my way!" Cue the cloud of SHAME!! I lied to the teacher--at the CHURCH pre-school!--so that I didn't have to admit to anyone that I forgot my own child! So I get there and run in--ok, ok...walked...really fast--and when I get in there, she's just happy as can be, helping the teacher clean-up. Teacher says, "oh, she was fine, I'm always here until at least 3 anyways, its really ok". So I feel like more of an ass for lying! Great!

Well, me and little Miss Sunshine roll out of the church parking lot and head over to get in line at school to pick-up JB and Jenna. And cue the 3-year-old, bawling melt-down! Total over-load for me! Call Butch, no answer. Call Mom, no answer. Frantically call Mom again..."please freakin pick up! Why the F#$% do you not pick up?! HOLY CRAP JUST TELL ME YOU FORGOT ME JUST ONCE PLEASEPLEASEPLEASE PICK UP THE DAMN PHONE!!"...still, no answer. "DAMMIT!!!"

I eventually calmed down. After some texting to the bestie and--finally--a phone call from Butch, I was convinced that, while I may not win "mother of the year", I am NOT a terrible parent. It happens to the best of us, y'all. On the bright side of this whole thing, she was totally supervised the entire time and was in a safe place. I didn't leave her at the park, or in the parking lot at WalMart, or anything like that. And, I was less than 15 minutes late (like only 14). So it could have been way worse. I am so thankful for her little pre-school, they are truly good people there!

And so ends another eventful day in the Margraves household. Please, please, please, let tomorrow be uneventful!