Raising an Autism Red Flag

Let me just start with this. We are so lucky and fortunate and blessed to have an ARMY of people at our school, friends, family and physicians that support us 100% through autism. They help us give Jackson the best chance to be successful at everything he does and never tell him he cannot be a part of anything he wants to do and for that I'll be forever grateful. With that said...

Controversy. Drama. If it's not one it's the other. No matter what you do in life, there is always going to be some kind of controversy. Whether it's the latest hollywood gossip about some celebrity and their trashy habit that sets a bad example for your kids or a friend of a friend of a friend that made your other friend mad blah blah blah blah blah. 

So fine. Let's go there. 

The controversy of diagnosing autism. In recent years in the autism world there has been a lot of back and forth about the DSM 5 Concept of Autism and how it would affect future diagnosis' and those who are already diagnosed. In English, the criteria for diagnosing autism will change and the new classification system eliminates otherwise separated subcategories on the spectrum. Meaning children diagnosed with Asperger syndrome, PDD-NOS, childhood disintegrative disorder and autistic disorder will be placed under a big broad umbrella of simply autism spectrum disorder (ASD). And from that poses the frequently asked question is "will my child lose his diagnosis?" And the response? Straight from AutismSpeaks' page:  

In other words, if you have a diagnosis for ASD, you have a diagnosis of ASD for your life and should be entitled to appropriate interventions for the rest of your life. Need for individualized services may change, and you or your child may need different levels of support or different interventions as you or your child age.  

Excuse me, but what the hell? 

I challenge someone who is qualified in the autism industry to give me a real answer. I'll take the risk of someone seeing this in the media or some medical person or what not tearing me up as a parent that's mis-informed, not qualified or uneducated or however they want to spin it.

#1 - WHY on Earth stick all of these kids and diagnosed people under this giant umbrella together? I think every parent out there of an autistic child will agree with me that every child with autism is different, which they ARE, does that really do anyone any good? Way to take the one-size-fits-all approach. Read between the lines - that's a cop out. 

#2 - You "brilliant" people focus on the wrong "C" word. You steer parents to the COPE for life when you should be looking for a CURE for life! It's been said there is no cure for autism, which I completely disagree with. You say there are treatments, great I love treatment. You say there are things that make it a easier for these individuals, I agree and am extremely grateful for everything we have that helps make our days easier. But where are the answers for helping people with autism no longer have autism? Kinda like sweeping the dust under the rug don't ya think? You can't see the dust, you treated it with the broom, but the dust is still there. 

#3 - It's a mentality of pushing aside controversy no one wants to deal with. Because it's often easier to medicate these kids and just send them on their way and we'll see ya in 6 months to write another scrip. Wash, rinse, repeat much? 

#4 - We don't all want to keep our "label". We get to keep our diagnosis for life? Gee thanks, how will we ever repay you? If it's needed, then so be it. Maybe everyone cannot overcome their autism, I get that. And while my son NEEDS his "label" for a million reasons right NOW, I have the hope that one day he won't need it anymore because he beats autism. And he's come a LONG way, so why can't he go all the way? What's wrong with wanting to beat autism? 

#5 - Sure, you can win for now. I admit we cope everyday, we have a long journey ahead of us, just like all families that are living with autism do. We fight for our son everyday and we love him unconditionally, but I cannot mentally accept just coping and dealing with autism forever and thinking this will always be something we just have to "live" with. Or at least I'm going down swinging. My hope is that we overcome autism and leave it in the dust one day. Will it ever happen? Is it even possible? I guess that's to be seen, but the mentality of our society just accepting that these kids are different and never looking for a way to beat autism is complete crap. Of course they are "different", we are all uniquely different you idiots.

I can't speak for all parents of autistic children, adolescents or even autistic adults. I speak for myself and my son only, but the thought of someone saying to me: "Your son CAN overcome all the adversity and no longer have autism" would be like winning the lottery to me and I am guessing I'm not alone. Does it mean that I'm not grateful for all the therapies, teachers, doctors and yes even medicine to help him sleep that we currently have in our everyday life? Of course I am grateful. We need all of that right now and I have accepted our diagnosis for a long time. I was even happy for the diagnosis because I know we needed it for Jackson to get the services he needs to succeed. But do I plan on him needing that forever? I sure as hell hope not and I'm going to do everything I can to see that we win this fight. 

~EM

Are you Au-ware?

So today was a special day of celebration. Not the first day, but a first for us and for Jackson. The first year for us to be a part of the World Autism Awareness Day. I have done a lot of thinking today, a lot of reflecting and a lot of realizing. Realizing that we are not the only ones. We are not alone. And together we can make a difference in the world of autism. I wore my blue for my sweet Jacks and I have seen countless acts of support through social media, community events and national fundraising campaigns to support Autism Awareness. 

Considering that so often we get arguably caught up in keeping up with the Jones' in our day to day lives, we often forget to remember just how blessed we are. Sitting in mass this past weekend for Easter the song Living Feast was playing as Communion was given. I returned to my seat holding squeezing Hallie and I found myself reflecting through prayer over the last 8 months and realizing just how far we have come as a family. I prayed for Jackson, I prayed for other children with autism and I prayed for families that live with autism everyday. I prayed in thanks for everything I have, in thanks for all the sacrifices that Jesus made for us. I prayed for peace. Peace and love and thanks. I was borderline ready to just let my tears go right there in the pew. What a difference a small amount of time has made in my life, our family life and most importantly Jackson's life. 

Even though today was a national day of recognition, there are 364 days a year that aren't recognized for autism, but trust me autism doesn't disappear. It's present in my life everyday. It brings about new struggles  and new victories for us everyday. And while I have been so wrapped up in all the hairy scary details of autism there is something else that doesn't disappear. And that's God, who is also present everyday. I guess part of me has been taking that for granted lately. Not by choice, just by default as a human being. Just being wrapped up in my own thoughts and struggles that I've forgotten about how much God really loves us and has a true path for us in life. For the first time in a long time, I think I am on the path that God has for me. Maybe a path I don't understand sometimes and it's just taken me a while (eh 30 years) to get there, but none the less a path. It may be a path of mystery, but it's also a path of survival and a path to victory. (whew... did I just say all that in public?)  

Our path is a path to share and it's so much bigger than we are, just like todays celebration of autism awareness around the world. So thank you for everyone who supported Autism today, it means so much. And I have to say thank you God for reminding me that you are always Au-ware of just what I need. 

Leaving you with one little boy who will forever light up my life.

~EM

No Words

Hello fellow lovers. Today I can't find the words. Maybe because today has been one of the hardest days for me and John throughout this entire hellacious autism journey for Jackson. It will all come to me in time, but today I am/we are overwhelmed with emotions. Everyday is a fight, but today we were fighting with our hands tied behind our backs. In learning more everyday about autism, the quirks, the good, the bad and sometimes the really bad, today was a rough one  friends. I definitely have a lot of emotions running through my mind and as my mind races, I can barely put a sentence down. 

I guess some days you just don't have the words. 

Switching from my feelings to something bigger than me, Autism Awareness Month is fast approaching and April 2 has been declared as Autism Awareness Day in Memphis. If you live in here, you should be there for the Light it Up Blue Event!!! I can't say how important it is for everyone to become educated about autism and just how much it affects so many people around you or maybe even you directly. I think any parent that has a child with autism would second that. 

Until I find my words.....

~EM

Add this to the Autism list

Ok, so Jackson has his quirks, his tremors, his own unique and sometimes strange ideas about whatever the subject may be at the moment. I get it. Sorta. But none the less I still get it. I am patient (mostly), I am kind, I try to be loving and understanding, but there is one thing that I CANNOT stand!

WHY WHY WHY WHY WHY ON EARTH DOES MY CHILD LIKE TO LICK FEET?????

For the life of me I do not and cannot nor will I ever understand what is entertaining funny or appealing about licking someone's feet. I mean what! I just don't get it. It's gross, it's disgusting and yet he finds it hilarious. Why on earth anyone would want to lick, touch and really even look and study feet?

I guess it's just another mystery of what's really going through his mind. Having a child who is autistic is like the eighth wonder of the world. You don't know how it happens. It's just this mysterious thing that is just out in the open but no one can seem to give any one real explanation, only ideas and "medical" reasonings. You don't always understand why things are the way they are and I really don't understand his thought processing when it comes to all things autism. 

The whole foot licking thing is just another one of those things I'm not sure I'll ever understand but I guess it's just another small thing in a big picture. I only wish I knew how he can be so focused and obsessive on some things (feet) and then other things I want him to be able to focus on-likes school work, he can't. Getting back on my trail of searching for tools, resources and help groups I'm full steam ahead again no matter how hard it is. On top of ADHD and focusing side of things, we're starting to talk school plans for next year, new therapies and more evaluations to include a neuro-psychological eval and behavioral therapy suggestions. The behavioral part comes in because as sweet and kind as my sweet little hugger is, he can also have a polar opposite side and when that rears its ugly head, Jackson can become quite aggressive sometimes. 

In an effort to protect him, our family and anyone he interacts with I feel like the behavior therapy is the next big thing on our list to get started. By no means do I think he really wants to hurt anyone intentionally, I just don't think he always fully understands there is a line you can't cross. He doesn't understand that just because someone calls you a name it's not a personal attack. It's just that the kid calling you a name is just that... a kid. Just a silly kid doing silly kid things. They don't really mean any harm of course, but Jackson's perception is that he is being attacked and so good or bad, he reacts. Try explaining that one or being in a public situation where people have no idea who Jackson or anything about him. Yet they judge and stare because of his actions. Sometimes, well a lot of times that is a hard thing to deal with friends. It's uncomfortable and it's hard to know if the choice you make in that moment was the right one or the wrong one. Not that I care what anyone thinks, because I don't. My concern is am I making the right decision for Jackson at that moment. Anyone have the answer to that million dollar question? 

Taking one things about an hour at a time, I'm continuing on and putting one foot in front of the other.

But for real if he licks my feet one more time.... 

~EM

Retain or Refrain? Today Autism... I hate you.

Woah. The entire month of February got by me and all I could squeak out was one measly blog post? Well, not that I owe anyone an apology, but honestly I wish I had written more. So I guess all I can say is I'll try to do better this month. Last month was not the best in the world in my book. I lost my grandmother, I have a few other personal things going on and I have been working a lot lately. But the work is a great thing! I really enjoy my job, love the people I work with and I am grateful for the opportunity to learn and retain so many new things along the way. 

Which brings me to that word.... retain. As we all learn things, we retain the things we learn right? Or at least we retain bits and pieces and maybe after a second run through we retain even more, well hopefully. The point is we learn. We learn when we are babies, we learn when we are kids and we learn as adults. Heck, we even learn when we are old. And all those things we learn give us the knowledge and empowerment to pass down all the information we have retained over the years to our kids, grandkids, friends and sometimes even strangers. 

Knowledge is power, but retaining knowledge is most often easier said than done. So easily are we distracted by the television, the text message on our phones, kids running rampant through the house, the dogs barking at nothing but their own shadow. Even in the most absolute silence, it can still be hard to learn new things. It takes focus, time and dedication to the task at hand. I'm not going to promise I was the best at any reading comprehension test in school and that even now I still have to read things two or three times before it really sinks in. (don't lie, you know you have to too) But at some point I do learn. I don't give up and I keep going until I feel that I have accomplished what I wanted to. That's easy for me to say. 

What's not easy for me to admit is that damn (excuse me, I'm a little angry tonight) word... that stupid scarlet letter "A" word is like a freaking curse on the retention meter. Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. (Yeah, this would be one of those pity party, feel sorry for myself posts so read on or don't - I have to get all this out) How dare you always rear your ugly head and make him struggle. 

Simple words that he should be able to somewhat easy for him retain by now. Words that come home every week. The same words with only one or two added each week. Shouldn't be too hard right? Well it is. It's painful. It's a struggle. It's an all out WAR just to get through that list some days. And you wanna know the crappy part? It's like the refrain of a song. See that's the part of the song that you always remember, the part you retain and why? Because it's repeated over and over and so you remembering the refrain is just easier. Sure you can fake it and mumble through the verse. But when the refrain comes on, it's like a full on concert and you know every word. That's how Jackson retains these words. They have repeated themselves so many times that of course he remembers. As long as they go the same way, every time. Just like the refrain. So really, is that learning? Nope. That's called the refrain. Memorizing the word list in the order that they come home in the same folder the same printed way, and that's how he knows them. But did he really retain them? Nope. Mix them up and mess up that "refrain" order and he barely makes it through the list with heavy coaching and a LOT of patience.

I sat and watched my husband trying to help my son tonight. I sat and watched Jackson struggle, but John too. The fact that Jackson has ADHD doesn't help us on the focus meter either, but watching two people you love both struggle in two completely different and heartbreaking ways is seriously misery. I know that children with autism struggle. I know that being autistic presents it's challenges in so many environments and in so many ways. What I wouldn't give to see the world through Jackson's eyes just for one day. To know what it's like to see things the way he does. I can't even begin to wrap my head around that.  Then to see my husband. To see him struggle with frustration. To see it in his eyes that he too is heartbroken that it's so hard for Jackson and right now it feels like there is NOTHING we can do to change any of that in this moment. John would and will never give up on Jackson, but tonight he had to just walk away. And I know he walked away because it is frustrating. But I also know he didn't want to take that frustration out on Jackson. I don't blame him at all. I think he did the right thing actually. Sometimes its better to walk away and just let your other half take over, because as parents, we too can become overwhelmed. We are also not alone, so I could tell John was leaning on me to take over, so I did.

Yes, I am angry. Yes, I am frustrated. Yes, this is one of those days, that I can't take much more. I just want to punch something. I want to take all my anger and frustration out. Out on anything but Jackson. I just have to get all of this off my chest today. I never promised that all our days would smell like roses. In fact, today just stinks. In all my positive hopes and dreams for Jackson, there will come some struggle. Unfortunately this is one of the days that is not easy. I know things will get better and I do try to stay positive 99.9% of the time, but today I am taking the .01% to put out there that every single day is a fight. A fight for a better tomorrow. And though maybe today is getting the best of me, it's only today. Tomorrow will be a new day. But as I mentioned a long time ago when we started Jackson's journey with autism. I am putting it all out there. The good. The bad. The ugly. And I'm here to tell you people - learning with a normal mind is not easy. Learning with autism is an entirely different ballgame because you are down 10 points before you ever start. Retaining the little things that come so easily for the rest of us, is like scaling Mount Rushmore for Jackson when it comes to retaining anything he learns.

Singing my refrain today for sure....

Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. How dare you always rear your ugly head and make him struggle. 

~EM

Commander Mommy - Drill Sargent

Wash. Rinse. Repeat. Wash. Rinse. Repeat. Makes perfect sense right? As a adults that's what most of us do on a daily basis. We get into a routine. A routine that gets us from A to B, from Monday to Friday, from the beginning to the end of a long day. Even all things "routine" can get a bit too repetitive, a lot boring and quickly stale. Imagine the same 5 meals for dinner every week. Mystery meat Monday, taco Tuesday.... you get the picture. Eventually that gets old. Seriously old. Soooo we follow the so called schedule in terms of doing the same things in general everyday, but thank God macaroni and cheese isn't the side item every Thursday. Unless you live at my house...

Boring - maybe. Monotonous - definitely. Effective - Abso-freakin-lutely!

You've heard the line "creatures of habit"...well Jackson is definitely a creature of habit. He could literally do, eat, yes I said eat and play the same things the same way everyday and perfectly content with that. Great, easy enough! That makes it very easy right? Wrong. Not even close. I'll be the first to admit that we are on a schedule, a strict one at that and I try not to veer from it unless necessary, and that's not always easy! He's as stubborn as mule when it comes to changing the "routine". So we stick to whenever possible in every fashion. Especially when I'm a one woman show and John's traveling. The TV stays off, the kids are in bed at 8 on the dot and I'm marking off checklists like a soldier. It's kinda becoming the only way I know how to operate these days (at least if I want to keep my sanity). Jackson is very much a visual learner. I can tell him something 10 times but I might as well ask the door to do what I'm asking. But if I show him or give him something visual and colored to reference, he gets it. It's like "Jackson language". Which is cool. So in an effort to not have the nighttime routine be such a struggle, I made him a visual nighttime chart. Yep, you guessed it. Pictures that are color coded for every task. He can associate the color with each thing on the list and knowing that it's time to move on to the next color and picture really helps him. Come to think of it, doesn't that help us all??? (Even Hallie likes to be instructional on the color block he's on at the moment, ha!) And without further delay... our trusty chart! (sorry for the crappy quality, I am obviously photo challenged today but you get the idea here)

I am in the process of making these charts for everything we do! That's very good in a way, but also means Mom is WAY ACCOUNTABLE for hitting every item on the list! (no pressure there) Here's the other side of that. Yes, these charts are super duper helpful. Yes, they help Jackson. However, I don't want him to only live by those charts and have everything come crashing down heaven forbid we miss something (because let's be real, at some point that will happen). Sneaky Mommy, teacher, drill sargent, care-giver extraordinaire to  the rescue! (ok ok just plain ole Mom doing what she thinks is best for her monkey to the rescue is more like it)

In learning as we go along, I'm finding little things everyday that seem to help Jackson whether it be at home, school, public, self help, whatever. So he operates on a tight schedule, fantastic. Newsflash! Life is not a set schedule! If it was, we'd all have it wayyy to easy anyway. So life happens, you take it as it comes. It's called  change. What was that I said Jackson was no good at? Oh yeah, change! Here's where the "meet me in the middle" strategy comes in.

Have it your way Jackson.... we are going to continue on the visual schedule rigmarole, I can roll with that. What I can't roll with is him depending on those forever. My plan. We'll stick to these "tight, same everyday routine" deals for the next little bit. Then my plan is to start incorporating and teaching him things from these visually. Like... making choices. So our schedules may go from one color block to two color blocks side by side with two different activities and HE will have to decide what he wants to do next, which path to take. It will teach him visually, it will force him to learn to make decisions, it puts him in control and gives him some empowerment. It will force him to communicate his decisions and most of all, it will teach him that he can be a part of his "schedule" and that things don't have to be exactly the same every day. Seem like common sense? Well, it's not.

No blog, book, medical webpage or any other crap resource out there suggested that one. There is no help manual or book titled "Autism Just for Your Kid" out there. So I'm writing my own manual. And apparently, my chart making skills will be stellar by the end of this too. Yes, it's time consuming to make all these schedules and add visual pictures to them that he can actually understand, but if it helps him, it's worth it to me. I hope through doing this to eventually add steps on the schedule that are blank boxes. Meaning there is no schedule. There is no certain thing to do. I hope this will teach him how to cope with change and welcome it. I hope it will teach him to "go with the flow" and be flexible. I hope that it will teach him that he can make his own decisions and feel good about his decisions without a pretty colored box to tell him what to do. See where I'm going with this? I want him to learn how to deal with life, but learn in Jackson terms. I want him to feel like he has been empowered to learn these skills because forcing Jackson with anything has never produced a positive outcome. He is definitely beating to his own drum and that's perfectly okay. My so-called manual may not help any other kid, but it could help lots of kids I don't know. I just know I have said many times that I plan to give him every tool I can to be successful and I that is what I am going to do.

I know this will be a slow process and we will have to go at "Jackson pace" but hey slow and steady wins the race. I'm going to be working with the school too, to incorporate this subtly into his day too. It's not that I mind if the other kids notice, but normalcy at school is key for every kid, so the less noticeable the better for the moment I think. I'll be sure to post updates on how my drill sargent and scheduled ways succeed or fail. I'm not worried if they do fail though. It will just mean we need to take another path. Everything is worth a shot in hopes for a better tomorrow. I wish I had a pretty visual chart to help me sometimes! Ha! I guess in a way, this will be my pretty chart that helps me too.

I have had people ask me, why I am so strict and stubborn about Jackson's schedule. Here's my brutally honest, um polite response to that.... IF at ANY time you think you would like to take Jackson for a couple of days and just go with the flow, you are welcome to do it! I guarantee you will be SPRINTING to bring him back and begging for a schedule at that! Trust me when I say for my sanity (and yours, lol) it's in everyones best interest for Jackson to stay on a productive and clear schedule! And for now,  I'm commander in chief and that's the way it's gonna go!

~EM