Wednesday, July 30, 2014

Peeling back the onion. (And fun pics at the end, if you get that far!)

Approximately 90% of my brain has been used to figure Elijah out this summer. It's been worth it because this week I finally feel like I'm maybe sort-of kind-of beginning to understand the way he thinks and organizes his thoughts. The following paragraphs may or may not make sense, so please bear with me. I have a lot on my mind but I have not pre-organized any of it.

We have really buckled down with routine and schedules. Our routine has become even more strict (if that is even possible). I write very detailed schedules on the white board, including times that everything will be happening throughout each day. I have to remind Elijah to glance at it a couple times every day and he takes it in. I can tell it helps to make him feel secure. He needs the predictability. Now that I'm writing exact times down, I have to do my very best to stick to them! If I write down that dinner is at 5:00, I need to make sure that happens.

There are so many layers to the challenges we tackle daily, so I sometimes forget the really helpful little details that we've learned along the way. Like making sure Elijah is exposed to sunlight (or faux sunlight) in the late afternoons/evenings due to his sleep disorder. A few days last week when it was raining and we didn't go outside, he was getting up REALLY early the mornings that followed. I've been making sure he goes outside as much as possible after 3:00 when it's doable. On rainy days, we will be breaking out his light again like we did through the winter. It seems to help enough to continue with it.

I've been extra zoned into what works and what doesn't work with him lately. He relies on anything that involves details or facts. When he meets someone new he asks them, "What is your name? How old are you? Where do you live? When is your birthday?" Then he says, "My name is Elijah. I'm seven. I turned seven on February 20th. I'm going to be in second grade in September. My mom is 39. She turned 39 on July 23rd. That was a Wednesday." He engrosses himself in geography and history (facts). He now knows where every single country in the world is located on the globe, can you believe that?! He knows how many countries are in each continent, what their flags look like, etc. He constantly checks the weather (I haven't shared with him yet that forecasts aren't factual, but right now he thinks it's concrete information). He falls apart whenever my answer to one of his questions is, "I don't know." He cannot handle that uncertainty and has a meltdown. I'm still figuring out how to deal with this (ideas welcome!). The other day he dumped a bunch of markers onto the floor. I said, "Elijah, you are going to have to pick these up." He dropped to the floor and began flopping around and screaming, "I caaaaan't! I don't wannnnt to! I CAN'T DO IT!!!!!" So I said, "Please pick up the green, red and blue markers," and he instantly was by my side looking for the markers in that exact order. "Green, red and blue? Here you go!" I have been trying to be as specific as possible and also to be as factual as possible when interacting with him. Unless we are doing silly tickle-time. Then nothing is factual and everything is out-of-control and awesomely silly. :)

I have also used facts as a distraction when he seems to be on the verge of falling apart. I will ask something like, "Can you tell me who the 16th president of the United States was?" and he is all over that and will usually follow it up with another question. Music has been a great distraction for him lately, too, so I use that especially in the car when things are beginning to unravel. He has a few books about the U.S. and magnets that he likes to look at with all of the U.S. presidents, so directing him to things like that helps sometimes.

And as always, we've been putting him to bed consistently early at night. According to the fitbit, he is sleeping on average 9 hours/night, which is great!

We continue to work on potty issues and every couple of days I seem to have a new idea. The other morning I had the thought to draw pause buttons on paper and cut them out so he could put them in his pocket. I've been telling him all summer to "push the pause button" when his body needs to go potty. I figure having an actual "button" to push (or just hold) might help.

I've had a few ideas for the upcoming school year. It might be helpful to write out some short questions ("Do you need help?" "Do you need a break?" "Do you understand?") and taping them to his desk so his teacher can point to them if he appears lost/overwhelmed (as opposed to asking him in front of his peers). I would like for there to be a safe place for him to go when he feels overwhelmed, and hopefully before he begins acting out. We are constantly trying to make him more self-aware. This has been a big challenge. He has such a difficult time describing general feelings or events. He is really good at explaining details, but main ideas and generalizations are really tough for him to grasp or explain.

Heart camp has been going great! He is so much more excited about being there this year. He seems to be having a blast. Sammy misses him while he is gone and they devour each other once they are reunited. Yesterday was "costume day," so he wore his new crayon costume. I found the following photo on the camp's website today. He spruced up his outfit a bit, I see. That's our boy! :)

Dan was home today so we all ventured out after camp to get our first-ever pet! Or pets, I should say. The boys are now owners of two betta fish! Elijah named his fish "Bluey" and Sammy named his "Fishy-Wishy." We are all so happy to have new family members! I found both boys gazing into the tank many times throughout the afternoon.

Here is a funny pic I took this morning after I told the boys, "NO toys at the table!" As always, they were good at finding the loophole. :) (Notice Elijah is studying presidents on the placemat.)

I think that's all for tonight, whew! Hubby-snuggle time and bed is upon me. Thanks for peeking in!


dxeechick said...

i hope i'm able to find a local heart camp for stevie when he's older! i love that!!

Anonymous said...

Hi Megan!!

I have a suggestion could you possibly ask his teacher prior to school starting to send you a schedule, so that you could go over it with E? That might help with predictability. And if their are any schedule changes that she knows ahead of time, perhaps she could let you know so that you could share them with E... Especially if she plans on being out for something, of course illness is a different story and cannot be prevented.

Not sure if this is possible, but what if E had his own teacher's aide that was strictly devoted to him or maybe he and a small group of students to help with assignments, transitions, etc? I am not sure what all goes into getting one but I am sure his special education case manager could assist with that.

All the best,
Maggie J.

Lauren said...

Hi Megan,
Forgive me if this seems forward. I've commented here once before but you don't know me.
I woke up super early this morning and found myself frustrated at lying awake in bed, and ended up just getting up early... and then found myself thinking about Elijah. I remember you saying, when he was in the heart of his sleep issues, that he was content to lie awake in bed when he awoke super early in the morning, and I always thought that was kind of odd. I wonder if he got used to having all that time to himself early in the mornings - quiet time to think and be alone and process things - and so when he is on sleep medication or whatever, his behaviour gets worse because he doesn't have that time. Obviously not sleeping is a huge problem, but I wonder if maybe instituting a bit of alone time for him in the mornings even when he does sleep would help?
I could be totally wrong and/or coming out of left field. I don't want to assume things or overstep in any way. I just figured I'd throw the idea out there because it came to me out of the blue, and God often speaks in those kinds of things.
All the best to you and yours,
Lauren <3