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

Can You Turn on the Water Please?

Ok, normally the whole "turn the water on" line comes with the general thought of someone going "tee-tee" and needing the water on to go right? Nope. Not for us. I'll admit that all things autism have taken a backseat on my roller coaster the last two weeks. First, my grandmother passed away on Thursday, February 7th. She was 98 and god love her, she had one long and awesome life. Exactly a week later on Thursday, February 14th her sister passed away. (Happy Valentine's Day, huh?) Check please! That's enough of the family passing away for a while if you ask me. Speaking of Valentine's day, I hope everyone had an enjoyable Valentine's day this year. I'll post my cute idea that I made for teachers gifts this year when I get to it. (I need to add that to my to-do list or it will be Christmas before I post it, ha) What did we do for Valentine's Day? Absolutely NOTHING! We literally went to bed and slept and that was perfectly O.K. for this exhausted Momma. And there you have it... the recap of my last two weeks in about 6 sentences.  

Back to the point of this post. I have been a little M.I.A from the blog world the last few weeks, but cut me some slack, it's been hectic! I kind of feel like things are getting back to normal though. John's out of town for work until Friday (weird that's what I consider normal isn't it?) and the kids and I are back to my drill sergeant ways of having things on a list and checking them off so we can survive til' the weekend. Sooooo I got back to researching autism and looking for new reading material and resources, not to mention making my lists for the city schools application for therapies they offer to private school children with disabilities (who knew right?) but that's another post (dang make that two things to add to the to-do list). Tonight I was researching autism and sleep- or lack thereof. Jackson often times has a hard time falling asleep and will sometimes lay in bed awake for hours, yes hours before he finally conks out. 

He then wakes up the next day with bags under his eyes and super lethargic to get moving in the morning. Sure doesn't speed up the process in getting ready for school either. So I wanted to see if there was anything out there to help with the whole "sleeplessness" that he seems to struggle with besides a dose of melatonin every night. Meds are not my first choice in helping him so I am always looking for other ways to achieve the same thing the meds do, well.....minus the meds. 

I came across several home remedies, do this, tried that's of things parents, doctors and anyone remotely internet savvy has posted about on the subject of autism and sleep and the reality is well, kids with autism just have a hard time sleeping sometimes! From weighted blankets to back rubs to black-out curtains, there were lots of suggested aids. I did find that some people recommend noise machines, sounds, etc. So I thought, what the heck. I got on my spotify account and started searching "nature" for any noise-making-theraputic-nature-sounding-ish (that's the technical term there :) uhhh music that I could find. And I found this waterfall earth track that's about 4 minutes so I added to a playlist for Jackson, put that sucker on repeat and told him to lay there in his bed and just listen to the water. 

Once he is asleep, he sleeps like a ROCK (no idea who he gets that from - Dad), but until he falls asleep he hears every creak and crack and gets distracted by even the heat cutting on in the house. It really sounded like a huge faucet on full blast with the volume so loud. But he seemed to lay there and listen and so I left him in his room with faux Niagara Falls, HA! I came back 10 minutes later to find... A SLEEPING BOY! Whoo hoo! Wish I had thought of this about 3 years ago to help him get to sleep faster! Who knew the simplest thing would work for him. 

I am hoping this will be one of those little victories we can check off the list of "things that help with autism" for Jackson, so we'll see if it has the same affect tomorrow or if he gets bored with the whole pretend waterfall. Since I've recently been surrounded by all things "life" that are sad and hard to deal with lately, I thought I'd post on a small victory of a happiness. A sleeping boy and a happy Mommy.  

Fingers crossed for continued running water and a sleeping boy. 

~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