Saturday, November 23, 2013

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!





Tuesday, November 19, 2013

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!

Wednesday, October 23, 2013

The Sunshine Award

Hey everyone! Today, I'm doing something a little different with my blog. Tsara has found my lil 'ol blog entertaining enough to nominate me for the Sunshine Award! Woohoo! I have *A* reader! LOL! This is a pretty neat little deal because we get to learn about all of the bloggers who participate and follow along with this little game. There are stipulations to follow, however:

For the Sunshine Award, the blogger must:
  1. Acknowledge the nominating blogger (Thanks Tsara @Autism Answers with Tsara Shelton!!) 
  2. Share 11 random facts about yourself. 
  3. Answer 11 questions the nominating blogger has created for you. 
  4. List 11 bloggers. They should be bloggers you believe deserve some recognition and a little blogging love! 
  5. Post 11 questions for the bloggers you nominate to answer & let all the bloggers know they've been nominated. You cannot nominate the blogger who nominated you. 
So, now I guess I'll get to it!

11 Random Facts About Myself (NO LAUGHING!)

  1. I love to cook--especially for a crowd. 
  2. I am a music fanatic. I love everything from classic country to 80s hair bands...I've been told I have an extremely eclectic collection of music. Classic rock and Texas/Red Dirt Country are my faves! 
  3. I have a weird obsession with eyebrows. I CANNOT STAND for any hair in my eyebrows to be out of place!! 
  4. I'm a Scorpio, and I think that description fits me well. 
  5. I have one lonely tattoo...a puzzle piece on my left wrist for JB. But there is a cool story about that tattoo, because my hubby has a matching one, and so do our 2 friends Dana and Brandon (Aunt Dana and 'Hunkle' Brandon to my kiddos). They also all fit together to symbolize that we're all in this together to support JB. 
  6. I drive a very un-cool silver minivan that Butch refers to as the "cannon ball', I refer to it as the "grocery-getter", and my mother refers to it as the "vomitmobile". Now you can imagine on your own what that's like. One day, I WILL have a Suburban!! (If I keep repeating that to myself, maybe it will come true!)
  7. Since having the gastric sleeve surgery, I truly do miss beer more than I miss any food! (Is that bad, lol?)
  8. I only use Aquafresh toothpaste.
  9. I am the only person I know who has dislocated her jaw a bajillion times.
  10. I LOVE Duck Dynasty!!! Mostly because there is finally a reality show where people act my kind of normal! 
  11. My favorite Disney movie is The Little Mermaid

Deserving Bloggers
Well, now, this is a little awkward for me. I don't actually know 11 bloggers, or read 11 blogs!! I will, however, list some blogs that I like and follow.
  1. Betsy at Trials and Blessings--She is totally awesome! There is always an inspirational, pick-me-up message in her blog. And they're short and sweet! She is such an inspirational lady, and I always feel better after reading what she has to say. 
  2. Autism Daddy has a lot of great info in his blog. Its also humorous and down-to-Earth. 
  3. Mac at Homestyle Mama (with a Side of Autism) has an awesome blog!! She is so very easy to follow and always has great info. 
  4. The Homestead Survival has lots of great info on everything from gardening and canning to raising your own animals for meat! Awesome information on lots of need-to-know subjects for our lifestyle.  
  5. Message with a Bottle OK, so this dude is just hands-down freakin' hilarious! LOL! I mean his little tag line for his blog is "PARENTING. ONE WISEASS NOTE AT A TIME." What's not to like? 
  6. I'm not supposed to mention, or 'nominate', the blog that nominated me, but I don't know that many, so I'm gonna be a rule-breaker, baby! Tsara at Autism Answers has such an awesome outlook on life! She turns everything into an uplifting, teachable moment. 
Well, I know its not eleven, but that's really all the blogs that I read on a regular basis. I told ya, I'm a rule-breaker.


11 Questions for the Bloggers I Nominate to Answer

  1. What are you thinking about at this exact moment?
  2. What are 10 random songs you love?
  3. If you could meet one person, living or not, who has inspired you, who would that be and why?
  4. What kind of museums do you like to visit?
  5. What place would you most like to visit and why?
  6. Chocolate or vanilla??
  7. What charitable causes do you support--not necessarily monetarily, could just be with your actions or beliefs--and why do you think that cause is worthy?
  8. What is your favorite animal?
  9. What do you love most about each of your kids (if you don't have your own kids, pick one you know)?
  10. What totally freaks you out?
  11. What is one of your guilty pleasures?
"And now, the rest of the story"--my answers to the questions Tsara posted.

  1. What do you enjoy most about writing? Writing is truly a therapy for me. I have found that if I'm stressed, sitting down to write about it helps to calm my nerves. That's how my blog was 'born', after all. 
  2. Who are some of your biggest influences? I would have to say that some of the influences in my life are other autism parents. Its phenomenal to see parents come together for the good of their children. Autism parents band together--after all, no one knows you better than someone who walks in your shoes every day. BUT--I do have to say that my parents are the biggest influences in my life. I had awesome parents growing up. I had the parents that you could go to when you needed to talk about anything under the sun. I had the parents who didn't let what everyone else is doing interfere with their parenting. I had the parents who knew everything I did before I got home from a night out with my friends ;). My parents both had jobs working their tails off to provide for us, and yet Wade (lil bro) and I still made it to every band practice, sports practice, games, boy/girl scouts, 4-H, FFA, etc. event that we ever had. AND my mom managed to keep a super-clean house and home-made dinners on the table. I don't know about some of you other parents, but I'm still trying to figure all of this out. I sure as hell will never be SuperMom, but if I can be at least half as good as my parents were, that's something! 
  3. Are you a shower or bath person? Well, I'm mostly a shower person, but never underestimate the rejuvenating super-power of a hot bubble bath with a good book and a glass of wine within reach! 
  4. When someone asks,"What do you do?", what is your answer? "I'm a mom!" 
  5. What is one fear you've gotten over in your life? I think the biggest fear I have (mostly) overcome would have to be my fear of failure as a mother. It does still sneak up on me every now and then, but for the most part, I have stomped on it and swept it to the side. I was so afraid of failing at being JB's mom. So afraid of having to fight this autism battle. So afraid of making the wrong decisions when it came to anything for JB, from ARD/IEP meetings to therapy decisions--they had me frozen and scared. All I really wanted to do was curl up in a ball and cry. BUT then, I stood up and had a Twisted Sister moment, 
  6. and realized that all I could do was do my best. And so far, my best has been pretty darn good, if I do say so myself. Fear stomped out.
  7. What is your favorite movie genre? I really like all kinds of movies. Sometimes I'm in the mood for an action, kill-'em-all type movie, and other times I want to snuggle on the couch with a box of Kleenex for a chic-flick. With a pillow though, because the Butcher is totally out on the chic-flicks. But I must say, my favorite de-stressor movies would have to be stoner comedies. You know, the ones where you feel like you've lost IQ points after watching them. Yeah, dude, those rock! 25 Best Stoner Comedies of All Time
  8. How do you usually react to stress? I think most people that know me would say I panic about stuff. But I will say I kick stress in the teeth (mostly because it sounds cool, because I totally panic.)
  9. Do you laugh often? I LOVE TO LAUGH and I do it as often as possible! 
  10. When people describe you, what word do you think is most often used? What word would you use? Well, I would hope that most people would think 'happy'. I try to be positive and laugh as much as possible. Now, a word I would use...well, that's harder. I would say 'honest'. I want people to trust me. I want people to see an honest, down-to-earth, and happy person when they look at me. 
  11. What's a favorite comfort food? Chicken fried backstrap (venison) with cream gravy, mashed potatoes, green peas, and home-made biscuits.
  12. Do you prefer to read fact or fiction? While I do read a ton of factual books (autism=lots of reading), I would much rather read a good novel.
Thanks for reading all these random things about me!! I hope you are inspired to play along in the comment section! If you post questions for me, I will try to answer them. Go on and play along with your friends, its a great way to get to know your buddies! 

Sunday, September 22, 2013

Celebrating Potty Training!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Why are there a large amount of exclamation points in the title of this blog post? BECAUSE I'M FREAKIN' EXCITED TO REPORT THAT THE BOY IS FINALLY **COMPLETELY** TOILET TRAINED!!!!!!!! I wish I could put a MILLION !s after that sentence!! It is sooooo wonderful to not have to worry about accidents. So wonderful to not have to carry around poop-y clothes after an accident. AND it is especially wonderful not to get those stares from the dumbfounded people who couldn't understand why my almost-eight-year-old was not potty trained. It had been going on for so long that I had grown a thick skin about those little sideways glances and crazy comments from people. But if you know me, you know that wasn't always the case. But that gives me a subject for a whole other post--you'll have to wait to hear about those shenanigans. This one is about celebrating my boy!

JB is now 8 (September 12 was his birthday), and he has just recently--end of this summer--became fully potty trained. Just for comparison purposes, both of my younger girls--Jenna is 6 (will be 7 next week), and Ressie is 4--were potty trained fairly early. We started for the first time with JB when he was around 2--ya know, the 'normal' time to start. Well, we discovered he was TERRIFIED of the toilet. And completely not interested in going on the toilet. He seemed to not care if he was sitting in a soggy or dirty diaper. That went on for a while. Then he became a little too-fascinated with the toilet and he began to start playing in it. Not like gross pee water and poop smearing play (a lot of other kids on the spectrum seem to do that though), but he was putting his toys in there and seeing if they would float. So one day he thought he's see in Thomas the Train like to swim. And well, he didn't. He sank. And got flushed. And then got stuck. A 'very useful engine' my ass! We had to take the whole toilet out and when we tried to pull it out, we completely broke the toilet! Grrr!!!
 + =



So we got through that phase, and eventually he started to pee in the toilet. That took A LOT of work at both school and home. When we talked to the therapists about his potty training problem, they told us that because JB has such a high pain tolerance, he more than likely couldn't feel that urge to go. So then we approached it as a timing issue. We took him at regular intervals and he learned to pee in the toilet. That whole pooping thing wasn't happening though! He would not sit down on the toilet. Another bump in the road. BUT FINALLY, after years of poop-y underwear and trying to 'get the timing right', it happened. That magical day when I looked up and saw him sneak into the bathroom (he won't go if he knows you're watching). I snuck up to the doorway and peeked around and witnessed a miracle!!  Praise Jesus!--HE WENT IN THE TOILET!!! Have you ever had a moment when you think you hear a majestical choir sing the 'Hallelujah Chorus' in your head?? Well--that was it for this momma!! I am so proud of my lil man! He is happy little boy!

JB and Jenna on the first day of school this year



Wednesday, August 7, 2013

A Soapbox Rant From Me

It was a night like any other recent night...

The kiddos had long since gone to bed. Butch was already in bed. And here I sat, at the computer, checking up on my little corner of Facebook, checking emails, and playing Candy Crush--all at the same time, LOL. And then I saw it...this pic was posted by a friend of mine:


And so it got me thinking. And I had a little discussion with a friend. And then I was thinking some more. WOW...this pretty much says it like it is. Blue lights are all well and good, but do people really know WHY we put out all those blue lights? WHY parents work their asses off and bug their friends and family about changing their light bulbs to blue bulbs in April?? Do they know the real reason we do this? Yes, most people can now tell you its for Autism awareness. But can they tell you more than that? Like WHY we need Autism awareness?? WHY we NEED people to actually BE AWARE of Autism?? Can they tell you that the newest numbers--and scariest numbers-- from some of these studies are saying that 1 in 50 kiddos will be diagnosed with Autism by the time they are 8 years old? (*Note that this is not the current 'official CDC diagnosis' number, but a number from a parent survey done by the CDC). Can they tell you what that's going to mean in 10, 15, even 20 years from now when these kids are grown and should be on their own? Let's face it y'all, a lot of these kids aren't going to be able to be on their own when they hit adulthood. What's going to happen to society, to the workforce, when 1 in 50 people (well, it will probably be more than that with the way these numbers are accelerating) have some form of autism?

I'll tell ya how I feel--it scares the hell out of me. It scares me because JB is on the more severe end of the spectrum. He's 7, and has just now been fully potty trained this summer. He can't speak. Yes, he will say words, but not on his own, he has to be prompted. He is so far in his own little world that he can't walk around our local grocery store without being beside me. He's only interested in running laps around the inside perimeter of the store. He can read well, and he's pretty good at the math for his age. He loves school and loves to learn. But I'm scared because I'm not sure that he could make a PB&J sandwich for himself if he had to. I'm scared because he can't cross the street safely by himself if he had to. Will he still be at this stage at 18? At 20? Who knows? I don't. And it scares the hell out of me. 

Yes, we need people to be aware. Yes, it makes me feel good to see all the blue lights in April, because to me, it shows that people acknowledge that there is an issue. But does it truly help? Not unless the people who put out the blue lights take the time to learn the "WHY" of it all. We need compassionate doctors who actually want to help recover kids, not just look at them and say "here's a list of things that might help, have a good day!". Where are the doctors who will actually talk to the scared-to-death parents and try to figure out the best plan of action together and not just rush them out of the office? Where are the support services that we need? That these people actually NEED?! They're being given to people who are cheating the system (for the most part, I know there are people getting services who do actually need them, and that's a wonderful thing). Why can insurance companies tell you that your child isn't covered under your policy because he has Autism? So...you cover other kids with other disabilities? Why is Autism different? Why will you not cover my son's speech therapy that he needs because he's never spoken and cover another kid's therapy because they lost their speech because of an accident? Do these companies think that my kid speaking is not as important at the other kid speaking? GRRRRRRR!!! It makes me want to scream, what these companies get away with.

((DEEP BREATH....in....out..........ahhhhh, OK, calmer now...))



The bottom line is this: we need to reach out to educate people whenever we have the opportunity. With numbers like these, eventually almost everyone will be affected by autism in some way.



(*steps down off soap box*)


Hugs to all of my autism friends...we CAN do this y'all!! Love and encouragement to all!!

Saturday, August 3, 2013

HOLY MONKEY BATMAN...she *finally* wrote a new blog post!

Well y'all, I'm finally back at it! Yep, after a huge absence, here I go again.

JB started summer school this week, and we have had one happy boy! Only one big fit this week, and that was on Monday after he came home from school. He came home upset and proceeded to get worse because he knew he wasn't supposed to be home from school that early. Poor baby--summer school is only from 8:30-11:30am, but JB wants his full day dammit!! LOL! Well, his fit escalated into full-blown melt-down mode, so I banished him to his room to throw his fit. I went in there and sat with him to make sure he didn't hurt himself (or throw anything through the window, which is A LOT more likely), and I finally got him to sit in his comfy beanbag chair and start to calm down. Well that lasted for all of about 5 seconds, so I bribed him with Veggie Tales and off we go to the living room to watch TV (Mom of the Year award to me, I know, but hey, it kinda worked). So I put on the Veggie Tales that I have thankfully DVR'ed, and even though he's still crying a little bit, he sits with me and lets me rub his back. And after an hours worth of Veggie Tales, I have a happy kiddo!

Mommy, on the other hand, needed a glass of wine! But HOLY COW BATMAN---she can't have any alcohol!! Why? Because I failed to mention that I was recovering from surgery last week, and of course JB would have a melt-down on my first day home alone with the kids. So here's the story on my surgery:

I had bariatric (weight-loss) surgery. I chose to do the procedure that's known as the gastric sleeve. Before y'all ask, no its not like the Lap-Band. In this surgery, they went in and took out the pouch part of my stomach, and that part that's left looks like a banana, or a 'sleeve' (get it?). By taking out that portion of the stomach, its supposed to remove the hormone that causes you to crave food even when you're not hungry. (Bet it doesn't work for wine, cause I still want that, LOL!) Hey Batman--that's just what I needed!!

So here I am, close to two weeks after my surgery, and I'm doing great! Pretty much the only issue I've had that's been hard for me to handle at the moment was the big melt-down on Monday, so I've had it pretty easy. The hubby has been awesome at helping me out! He's done dishes and fed the kids and even done the laundry (even though that makes me cringe, he didn't ruin anything this time, LOL)! The one complaint I have is that on the night he made homemade burgers, he wouldn't let me lick the patty! I'm on a liquid diet, give me a break here! The 'juice' coming off that burger is a liquid--give it up! Nah, I'm playing, I should NOT be licking burger patties! Thanks for saving me Butch!

So all is well here in 'hillbilly land' where we live. Right now, Butch and a buddy of his are outside cuttin' down dead trees. Luckily, this time Butch and the chainsaw have not had a disagreement, so I have seen no chainsaws flying across the yard. Another plus--Butch is not doing his famous lumberjack move of swinging an ax once, stopping for a swig of beer, then taking another swing with the ax, all the while sitting on a bucket. The day has not gone downhill yet! Woohoo!! That'll do it for now y'all, I'm off to make sure no trees fall on the house!


Wednesday, January 30, 2013

How We Do What We Do--Mealtimes

I get a lot of questions from people interested in how we got JB to actually sit down at the table and eat with the family during mealtimes. As opposed to a lot of other ASD/ADHD kiddos who seem to only want to 'graze' when eating or come take a bite or two and get up and run a lap or two around the table and eat another bite, etc., on and on. Our usual 'quick-answer' to this may sound pretty harsh to some, but here it goes: we simply don't allow it. It is a behavior that we have worked EXTREMELY hard on to stop. And we finally have achieved success with this, as well as achieving success with some of his food tolerance issues. Let me give you a little look into what mealtimes used to be like with JB:

CHICKEN NUGGETS, GOLDFISH CRACKERS/CHIPS or FRENCH FRIES, and FRUIT (at least we got some fruit in him!). PERIOD--that is all! Well, throw in the occasional PB & J sandwich and maybe a cookie or two. JB absolutely refused ANY vegetable, no matter how it was 'disguised'. He also refused anything soft or runny. I bought several cookbooks about how to disguise veggies or cook kids' favorites in healthier ways...it was all for nothing back then. He wasn't having it, not matter how much chocolate was in those brownies, he knew that deep down in there, there was also zucchini. And 'normal' kid favorites like mac & cheese or mashed potatoes were a total no-no. He wouldn't even touch ice cream or pudding or popsicles!! And as much as he loved fruit, he wouldn't touch a banana that was the slightest bit over-ripe. OMG...I wouldn't be the woman I am today without all of those childhood goodies! Well, as it turns out, we learned from our therapists that food aversions (especially having to do with textures) are very common for our ASD kiddos. Their approach to helping him? Let him play in his food! LOL! Sounds silly, but it really did help with his texture issues. He wouldn't even tolerate those textures on his hands in the beginning, but eventually, he loved playing in the food. They would put a big blop of pudding on the table and he was supposed to just smear it everywhere and draw in it or write letters in it, or whatever he wanted to do. He liked to drive cars through it! But eventually, all that playing in his food led to him voluntarily putting his hand--covered in pudding!-- in his mouth, and viola! He ate pudding!!! YAY!! Now this isn't a miracle or overnight 'cure'...this took a long time and a lot more than just playing in the pudding. It also took more than just doing those things at therapy. We had to bring those practices home and do them here with JB also. You can't just drop a kid off at therapy and say "here, you fix him" and then take him home an do nothing. You have to get in that therapy room and learn what they're doing and apply that knowledge to things you can do at home to supplement therapy. Its like doing homework...and if you skip the homework, you're probably not going to pass the class. 

So now we've got him trying A FEW new foods...soft things, still ABSOLUTELY NO VEGGIES. But what about behavior. How did we fix his constant grazing and constant need to move, even while sitting at the dinner table? Well, that wasn't exactly a walk in the park either. It was really hard, especially for Mommy, because I hate to have to punish the kids in any way (don't get me wrong I WILL do it though, I'm not a pushover), and that's pretty much what we had to do. I had to get over everyone telling me that because JB has Autism he doesn't understand punishment. Let me tell you now, that's a bunch of baloney when it comes to JB. My kid knows when he's doing something wrong, and now he also understands punishment. It just took longer to teach him about consequences that it did to teach the girls. But it is definitely do-able. (So all of you struggeling with discipline, please don't give up!! If you do you're giving up on your kid if you do! Your kid CAN learn right from wrong!) Yes, now there are times when I can say "that's the autism and he can't help it" or "that's just a behavior issue and it can be stopped", because now I know the difference. 

So now that I've gotten a few thoughts on discipline out there, lets talk about discipline as it relates to family supper time. JB is held to the same standards as my two girls are, and here are our rules: 1.) you will wait to start eating until after we bless the food, 2.) you must use your 'lady' or 'gentleman' manners, 3.) you must try everything on your plate at least two times before saying you don't like it, 4.) no toys, books, etc at the table, 5.) no TV, 6.) you must eat all of your veggies and most of everything else to get dessert, and 7.) you will clean away your own place setting. These days JB doesn't usually have a problem with our supper rules. In fact, I think we have to remind the girls about the rules more than we do JB, LOL! But this was not always the case. JB used to be a grazer, all day and at supper. At supper time, he would come sit in his chair, eat a bite or two, then get up and run a lap or two around the table, and then start the cycle again. This was not fun for us, and was definitely not fun (or socially acceptable) in a public setting or at a friend/relative's house. So while it may have started out as "that's just his autism, and he can't help it", we figured out a way to turn it into "that's just a behavior issue and it can be stopped". We figured out that it was going to be a two-step process: the first step was to stop the grazing; then we would work on the running. What we did first was to lock up all of the food that was accessible to JB though out the day. We converted a large gun cabinet with locking doors (that we didn't need anymore because we 'inherited' the world's biggest gun safe when we bought my parents' house) into a pantry cabinet. All we did was pull out the gun racks, add shelves, and move it to the kitchen. We lock up all of JB's favorite munchies, including the fruit, in this cabinet. We also bought a bicycle chain to lock the refrigerator. The only thing he can now get without supervision is a drink of water. Locking all this up also had a hidden advantage that we didn't count on--it helped with his speech! He now has to come and request something from us before he gets anything to snack on, whereas before he just did it himself with no interaction at all. BONUS! After "the lock-down", we had to set a definite snack schedule. On school days, they are only home to get one snack a day, in the afternoon, about 3:30-4:00. n 
That is the only time a snack is offered. On weekends, they get a snack around 9:30-10:00, plus the afternoon snack. And of course there is breakfast, lunch, and supper. There is no option given for food any other time. So that cut out the grazing behavior. Well, at least as long as lil man doesn't get his hands on the key for a pantry-raid, which does happen, 'cause hey, even we're not perfect!! 

So step one was pretty easy to implement and went pretty smoothly. Step two wasn't that different. Step two was to "get the wiggles out" before supper time. When the kiddos get home from school, we send them straight outside (weather permitting) to run, bounce and get all their wiggles out however they want. They have been cooped up at school all day, with only a little bit of a chance to run and jump and play. So when they get home, we let them run around like crazy little monkeys. When it starts getting dark, or they need to come do a few chores, we call them inside. We have a nice little fenced in backyard that I can watch through my kitchen windows while they play and I prep and cook supper or do laundry. I know, you're jealous that I can usually cook dinner without a kid wrapped around my leg...genius idea huh?! What about homework, you ask?? Homework is an after dinner or early morning thing for us. We figure it can wait, as long as it gets done. When JB first started school, we sat down and did homework, and then he had to go play in his room or watch TV while I cooked, so he wasn't "getting his wiggles out" doing that. This active time between after school time and supper time has really helped. And if its rainy or just too cold to go outside, Butch is in charge of the kids. And if Papa Bear is in charge, that means lots of wrestling and rough-housing, and time on the little indoor trampoline in JB's room. Butch is really good with this "job". 

Our little two step process was a success!! What do we do now?? How do I get a vegetable in this kid? Well, it took A LOT of hard work and dedication. I stopped making separate meals for the kids. Either they eat what I cook for supper, or they don't eat, period. After a few nights of leaving the table, they ALL started trying new things. Another BONUS! Ressie and Jenna were falling into the food rut too, and not eating and veggies. So the bonus was getting them to try new things too! And this was super hard, I promise. it really sucked that the only thing he would eat off of his plate was his serving of fruit. JB refused everything else in the beginning. So he would eat his little bit of fruit and go to bed hungry. I HATED it, but ya know, I think it took less than a week for him to try his first "new" thing. So it wasn't really that bad. ((side note before someone starts freaking out and hollering 'child abuse' on me for starving my kids...We only did this at supper time. Breakfast and lunch were very easy-going while we tried to make this huge change at supper time. And that's important--only work on changing one thing at a time.)) We slowly made progress trying one bite of this and one bite of that, and sometimes, we had to physically feed him like a baby, and occasionally we still have to do this. But because this is something we've stuck with, he's learned not to fight us anymore, and that we're not going to give up until he takes a bite of everything. 

If you take all of this and combine it, you now have a well-rounded young man. You have little boy who will sit and wait for a prayer to be said before eating. A little boy who will sit still through an entire meal without the need to run laps around the table. You have a little boy who will try a bite of everything on his plate. You have a little boy who can use his manners and say 'please' ("pleeee") and 'thanks you' ("dank u") and use his manners. And you even have a little boy who remembers that he has to clean up his place setting. All in all, you have JB, a very well-behaved young man who happens to have Autism. Do we still have our bad days? Of course, and you will too, but what's really going to matter are all of those good days you're gonna have in between the bad ones--and the bad ones will happen less.  

Well, I hope this helps give some of y'all s few ideas to try! Please feel free to ask me any questions you might have down in the comments section, and I will do my best to answer them.  

Friday, January 18, 2013

"Hey...Mom...I'm Goin' for a Walk, K?"

Well folks, it's a been a few days since I've written and for that I'm sorry. I've been sick and just haven't felt like dragging myself over to the computer to write. And on that same note, I have so much gunk sloshing around in my head that I can't really think of anything new and interesting to write about, so I'm gonna tell y'all a little story about the scariest-- and at the same time, one of  the funniest (now its funny, then it wasn't...you gotta laugh about these things, ya know, or you'll go nuts)--days of our lives.

"Hey...Mom...I'm goin' for a walk, k?" That would have been awesome to hear before JB, then age 5, took off out the door. Instead, I heard nothing. And I mean not one...little...noise. (I secretly think the boy is a ninja--he's so freakin' sneaky!!) Of course, that could have been because I was on the phone taking care of some actual business--*gasp*, not gossiping-- (one day I will have my revenge on those bill collectors!), and not paying attention to my boy. He always picks those time to do things like this. JB watches you and waits for that perfect moment when your attention so focused on something else and then...BAM!! He's done something he's not supposed to do. Like stuff Thomas the train down the toilet, or slap one of his sisters, or grab a biscuit, a cookie, or a huge block of cheese and eat it when he's not supposed to!! Or in this case, sneak out the front door.

So I was on the phone arguing with some collection agency--pick one, any one, autism is expensive, OK--with my huge binder of bills and records spread out on the kitchen table. Everything is going well so far; the kids are actually playing quietly and not running in to interrupt me, and the baby, Ressie, is sleeping. Alright, I got this...I'm free to take care of business. But sometime while I was on this call, which was a long one, JB managed to walk right past me and out of the front door without me noticing. When I hung up the phone, I decided it was time to wake up Ressie from her nap or she would sleep forever and not sleep that night. (Ressie has always been an awesome sleeper). So I go and get her and change her diaper, and as I'm coming  back out into the living room, I notice that Jenna is by herself. OK, no biggie, JB goes to his room a lot by himself, so I go in there to check on him. Again, no JB. I even check the closet, which is his quiet spot/reading nook. NO JB. OK, well, he likes to snuggle up in my bed ans look at books or play games on my phone, so I go that way. I'm starting to panic just a little bit. Get to my room, NO JB. Panic level increasing, I grab the phone, dial my mom's number, and start at one end of the house and make my way to the other end, looking everywhere. STILL NO JB. FULL PANIC MODE!! "Mom, I can't find JB anywhere". Mom: "did you call 911?" Me, panicking still, I yell: "I CAN'T FIND JB, I'M GOING OUTSIDE!!". ((OK, so here is where any normal person would call 911, but I was so panicked, I couldn't really think of what I should do)). When this happened, my mom was still living next door to us, so she quickly ran up the hill to help. She also called 911, and then a few other family members to help us look.

My first thought about where he would go was just outside either the trampoline--NO JB--to the swing set--STILL NO JB. Its a huge one with a fort and a slide and everything, so after I looked all through there to make sure he wasn't hiding, my panic level was even higher. Next thought: "JB is fascinated with the pigs", so  go look there. Next immediate thought: "HOLY SHIT WHAT IF HE GOT IN THERE WITH SAMSON (the big aggressive boar we had at the time)?!!!" Scared the hell out of me because that pig was not at all friendly and he was huge! A big boar will tear a man up, so just imagine what he might do to a 5 year old!! So I get back to the pig pens, all the while carting Ressie and a phone--it was on, so not actually doing me any good, with the annoying 'would you like to make a call' recording going over and over, but I was so panicked that I didn't register that was going on. So I start stumbling back towards the house, bawling my eyes out, not doing anyone any good. ((If this ever happens to any of y'all, try to stay calm and think. I panicked and couldn't be any help at all to my boy.))  Meanwhile, Jenna is on the front porch, where I told her to stay--she's the good one, LOL--yelling "JJJJJJ BBBBBBBBBB" over and over, and my mom has, by this time, run up the driveway and out to the road. As she is walking down the road looking, she runs into a guy walking our way. He asks her in halting English if shes looking for a little boy. She says yes, and tells him what JB looks like. They man says he knows where he is, come with him. So she yells at me and I hear her. By this time, the sheriff's deputy has arrived, so they end up riding down the road and around the corner to this guy's house.

Apparently, 'what had happened was'--when you start a sentence with this phrase, it usually means what follows is a little crazy, so its fitting, I think--JB took off out the door, wearing only a T-shirt, undies, and tennis shoes with no socks, and went for a little stroll in the woods. He ended up at this family's house and just walked right on in their door, without knocking, helped himself to a banana off of the counter, kicked off his shoes, and sat down with their 2 kids to watch cartoons!! This poor couple had no clue what to do, and they started asking him questions, but they don't speak much English, and I'm pretty sure JB doesn't know Spanish, no matter how much he watches Dora and Diego. Add to that the fact that JB doesn't speak, and well, of course they didn't get any answers out of him. So the dad decides to start walking and looking for someone who is looking for a kid. So he finds my mom on the road and viola! JB IS FOUND SAFE!!

Let me just put in here how thankful I am that he walked in on a very nice family and not some crazy person. It could really have turned out a lot differently, and I am so thankful every time I think about it for how this event turned out. Thank you Lord that I can now laugh at this and share it with folks as a way to help them learn about how easily a child can slip away from you.

So after Butch made it home and I stopped shaking, we rode down the road to meet this family and thank them for "finding" JB. We exchanged 'thank-yous' and 'your-welcomes' as well as we could and even tried to offer them some money as a thank you, but they wouldn't take it. I was, however, able to provide them with a pocket information card--in Spanish even!!--about Autism. So I hope that helped them to understand why may child was wondering around with no parents only half-dressed.

Well, we ended up installing door alarms, but luckily JB has only tried to escape one other time after this incident, and because Papa Bear (Butch) was home at the time, he got caught. And I'll just tell ya that he made it as far as the detached garage before being made to turn around and head back inside. And I will tell you that after that run-in with one very upset Papa Bear, the boy has never tried to escape the house again. With Butch's help, I finally quit blaming myself and quit thinking about all of the horrible things that "could have" happened. Then I figured out that I could even laugh about what did happen and move on and share our story.



I would like to ask y'all, after reading my story with a happy ending, to please say a little prayer for the families whose stories of wandering didn't end so happily. Almost every day, a child with Autism wanders away from family or caregivers, and those stories oftentimes do end tragically  We ask the Lord to please watch over those families and give them strength. 

Monday, January 7, 2013

An Easy-Going Day

Well y'all, its been a couple days since my last post, but that's because there hasn't been much of anything going on around here. And today, that's still the case. The only thing exciting was that it was JB and Jenna's first day back to school after the Christmas break ((wooohooo this momma is doing the 'happy dance'--no more fighting and arguing!!! Only one kid at home--wooohooo!!)).

Jenna was so excited this morning y'all! She woke up for the first time to her new alarm clock (a Disney Princess one of course, lol), and then she was so excited to get ready in one of her new outfits that she got for Christmas (thanks to Nana!). JB on the other hand, will take a couple of days to adjust to the routine again. Even though he spent most of the break waking up at pretty much the same time every day (between 6 and 7--grrrrr!!!), and doing his basic morning routine, he got out of the routine of going to school. So, it might take him a couple days to get back into the swing of things. He does love school though, he was just a little fussy this morning. And he also went to school in a new outfit and his new boots (again, thanks Nana!), but could really care less about his outfit--typical boy!

So, I've had a pretty boring day so far. Took the kids to school, then came home, picked up a new magazine (Mary Jane's Farm...I love it!), sat on the couch with Ressie to read and snuggle while she was watching Dora.  I think i made it  two lines into the first article and then I dozed; I did't sleep well last night. So i doed in and out for a little over an hour and then finally got my butt up Butch finally got my butt up off the couch to get started on the day's work. So I did the normal laundry and dishes routine, and rounded that out by cutting some gum out of Ressie's hair, *sigh*. At least it wasn't a huge chunk or anything, it soooo coulda been worse since she has so much hair and it's down to her butt. So now I flop down at the desk to get on the computer while eating my lovely lunch of chicken noodle soup (nope, not sick, just sounded good) while keeping one eye on the window next to the desk so I can make sure a tree doesn't fall on Butch's head. Oh yes...the Butcher with a chain saw...only the chainsaw wouldn't start, so he decided he was just gonna use the ax. Yep...on the biggest tree that needs to come down. I'm wondering if he has some pent-up frustration there that he's taking out on that poor dead tree. Annnnddddd....TIMBER! All's well...it didn't fall on his head...the Butcher will live to fight another day! Whew...glad that's over. Hopefully he's going to work on the chainsaw now instead of going at more trees with the ax. Please...I hope...

So all-in-all, its been a good day. A day in which--so far--Autism has not kicked my butt! But there's always the evening hours!! ((Insert evil villain laugh here))


Thursday, January 3, 2013

Trampolines, Temper Tantrums, and Gardens, OH MY!

GRRRRRRRR!!!!!

A lil frustrated fright now! We just got over a mini-meltdown over the trampoline of all things! JB loves the trampoline...so why the tantrum?? Because its cold outside and I made him keep his slippers on his feet to jump. And I guess he thought it WAS THE END OF THE WORLD! Because I'm usually yelling at them to take their shoes off while they're on the trampoline. Poor baby got confused...and then he absolutely freaked out because I made him put his slippers back on after he took them off. Of course I was a little perturbed because I had to chase down his bosom buddy Coco (our Chesapeake Bay retriever) for the damn slipper she was gnawing on...I'm sure my pissed-off-edness (like my word?? I do that...make up my own every now and then...) didn't help JB's mood, but still...GRRRR!

OK....now I'm just laughing at myself, for all of this frustration. ((Light bulb moment: maybe this blogging is actually good therapy for me...hmmm...who woulda thought??)) All is right in his little world now, after calming him down, giving him some lunch (and a little time to settle down), and telling him he can't go jump without his slippers to keep his feet warm. Now the lil man and the princesses and 2 of their friends are outside jumping and having a ball! All is right in the world. I love watching them play together!

IN OTHER NEWS...

Well y'all, I'm trying to plan the layout for my garden this year. I don't want to have a huge one, but I definitely need to get in some tomatoes, onions, bell peppers, and a few herbs if I can. Butch is worried about having enough time this year to do the garden because he is, once again, working his butt off. But who am I to complain...get that overtime baby! That just means that all of this gardening work will be mine...yuck. But he still has to find time to build a new chicken coop. I'm not tackling that one on my own with a munchkin attached to my leg!

The good news about all this gardening work...JB loves to dig! I just have to keep him digging in the correct places! Free child labor...woohoo! OK, so out comes the gardening book...I'll update y'all on how its going later on! Everyone have a lovely day!