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

It's Out There, Sorta...

For those of you who read my blog, it's out there, you know about Jackson. You read first hand my take on this experience. But there's another side of the story. A whole other side. Other parents. Other peers. Namely at Jackson's school. I'm not sure anyone there knows except his teachers and some staff. As for the rest of the gang in his class... not so much (I don't think). Is there a right time to tell? How do I tell? Do I even tell? Will it spawn whispers in the corner? No. That's not what I'm worried about. I'm not really worried at all actually. And I don't think anyone will judge him at all. But it's not like I can send home cute monogramed postcards to all the kids to deliver the message either. (Can you even imagine getting that message on a postcard???)

The golden questions still remains. How do I bring them in on the situation? I have mentioned before that we have every intention on Jackson staying at his school so long as he is accepted, progressing at a good pace for him and successful. I think he will be. But with that, part of his success depends on the people he is around, his peers. He spends just as much time with his school mates as he does with us, so it's important that everyone knows. Not because its a reason to treat him any differently, just more so they can understand him and be part of our support team, just as we support all the other kids the same way. I know other parents have to see his differences. But maybe they don't either. Just when I think someone might get a hint, I can't be sure. And taking a step back to put things in perspective (I do that a lot these days), if I were in their shoes and I noticed anything, I wouldn't know what to say or ask. Honestly, I probably wouldn't even want to ask for a fear of upsetting someone's feelings or sticking my nose where it doesn't belong. 

I have learned through this entire process that we all react differently to things that affect us both directly and indirectly. And that's ok. I used to be so quick to judge and think that people didn't understand or get what I was trying to tell them, which is hard to admit. The truth is, they didn't react the way I wanted them to. Cue the perspective... hello Ericka! It's not about how YOU want people to react. It's about allowing other people to take in information and process it for themselves and accept that people need time to be accepting on their own terms. Can we say Oprah Ah-ha moment!?! 

My mission now is to connect the dots. Connect Jackson's autism to the other parents and students at Jackson's school and understand that it's going to take time and a whole slew of "reactions" before everyone can fully understand. Of course I think we will be supported, of course I think they will still love my sweet Jackson just the same, but Jackson also affects the other students as well. It's not all just about Jackson. I have to think about that. I don't mean that in a negative way at all. He will teach them and they will teach him. But there will be times that he will not have the same reactions to his peers. There will be times he gets frustrated with his school work and may act out. There may be times he will be overwhelmed and need a sensory break. How do I know that? Because I we have been there, done that, got the t-shirt folks. 

Although I'm still not sure how it will all "come out" to everyone I'll just take it one step at a time. I'm going to talk to the school and maybe reach out to some support groups for advice and ask other parents who have been down the same road as us. I'm also open and all ears to anyone with advice on this. As my little monkey teaches me something new every day, he has definitely taught me to think outside the box of acceptance and comprehension. No one ever goes from A to B the same way, we take our own path and share our experiences with each other. That's how we learn, that's how we process, that's what makes us who we are.

~EM

The Mummy Test

Ahhhhhh... the MLK holiday. Yes, I was off work and yes I spent the entire day with my two little monkeys.  I don't get too many days at home with them (which may be good for my sanity to some degree, ha) but I often take then time with them when I can and love every minute of it. We stayed in our pajamas til noon, yep noon. Can't say I do that too often either, but trust me, I'm not complaining about having a few lazy hours.

Jackson had a birthday party to go to on Monday for his friend Peter, so at 2pm we headed out to Pump it Up to celebrate and exude some energy for a little bit. Jackson was having a good time for about the first 45 minutes, but a room full of wild boys, bouncing blow-up slides and pegging heads with bouncy balls and you can probably guess how that was bound to end.

Before we reached that point, it was time to leave and head to the doctor. (Phew! Crisis meltdown averted!) Jackson had a EEG (more on EEG here) test scheduled for 4pm. Don't think I got off that easy however. A full on meltdown over missing the cake at the party was the meltdown culprit all the way to the doctor. Ugh... some days I need a raising window in the car. You know like the ones in limos so people can block out the sound from the back to the front. I would have given my left arm for one of those windows during that car ride. We got to Dr. Eastmead's office in Midtown and in we went. Normally I don't like to take Hallie with me, but on Monday she was in tow since John was out of town for work. I was instructed not to give him any caffeine 24 hours before the test, no this, no that blah blah blah, but let's be serious. Jackson is like an operating caffeinated jack-rabbit without the caffeine. Do you really think I give him that stuff doctors??? Really!?!? Ok ok, back to the test. Just had to get that out there. We didn't wait but maybe 3 minutes before they called us back to get started. Lots of gooey gunk, a bazillion wires later and a full mummy headdress and we were ready to go. 

Not to my surprise, Miss Hallie felt the need to be right up in the middle of the action. She held Jackson's hand the whole time and told him, "You're doing reawllly good Jack". I was so proud of her. Only 3, but man she is well beyond her years. She amazes me everyday with how mature she is for her age. She never faltered the entire test. In a way I felt like she relieved me of some of my Mommy duties for this test. She was being the strong warrior for us both and honestly, I let her. It lasted about an hour-ish and Jackson ultimately fell asleep during the test, which he was suppose to do for the latter part of the test. 

As the technician warmed water in the microwave Hallie continued to ask questions and be involved. "What are you going to do with that?", she asked the technician. She told Hallie that was to help remove the sticky stuff from Jackson's hair. Even though that was the answer, she still stared a hole through the technician through the whole process. (ha, my little protective one) Even the technician mentioned how "aware" she seemed to be during the whole process. Normally I don't post pictures from any testing but I feel like this is all part of the journey, so.... head wrapped "mummy style" and another test we can check off the list, here's my little mummy during his EEG. 

Poor thing, he was NOT a happy camper by the end of this experience. I tried to explain that it was just some wrap and that it's ok, but huge shocker here... he didn't care (or even understand). All he knew was that he wanted off that gurney and he wanted that head wrap off! And fast! So fast, that he tried to "assist" in the removal process, which was all but a huge fail of frustration for him.  

On a lighter note, Jackson's latest trick of the trade is to name every female he meets "Woman". So as he was being set free from the mummy gear, he was yelling at the tech saying, "I don't like this you Woman!!!" (lol) Even though it's not funny, we were both laughing at the moment. It was cute, sweet, innocent and typical Jackson in every way. I am more than pooped this week and it's only Wednesday. The results from this EEG will be like most of the other testing, we'll be waiting for a bit to hear results. (big shocker there) Oh well. Glad to have this one out of the way and I think my little dude would second that.  

This will sound silly, but I'm glad Hallie was there on Monday, even if she is 3. I talk to her about Jackson a lot because believe or not, I think she gets it. My very own little pint-sized shrink ha! So thanks to my little peanut for being my rock on Monday. She's the best!

~EM