Luke’s Brain

I often struggle to understand or explain Luke’s thought process to others. Luke, my 15 year old primarily non-verbal son with profound special needs. Friends, bystanders or even specialists will inquire about where he is developmentally and that answer is difficult to identify. Luke’s brain doesn’t seem to process like typical brains – whatever a typical brain is – but there is a baseline that we all adhere to and he doesn’t land linearly on it – or near it at all. He tends to land here and there and everywhere. He understands more than he can comprehend & yet there is a process that is uniquely his. I believe at times it’s clear to Luke what he desires, but at other times it’s not, and so he’s not able to articulate exactly what he wants. For instance, when he says Mother Goose this does not mean he wants Mother Goose. It means I don’t like what I’m watching so please change it until I stop screaming which will then be your indication that I’ve made a decision. All he knows is that there is something in his sphere of existence that is causing frustration, and he reacts by screaming until that frustration is addressed.

We attempt to remedy his angst by offering different music, shows, activities, or remove him from the current surrounding, and it may help or it may not. Many times we’ve gotten him ready to go “Whee!” at the park, per his request, and we arrive and can’t get him out of the car. He absolutely refuses to leave the vehicle and engage at the park. So then we bring him back home and start the process all over again. One thing that does work about 100% of the time is feeding him cookies or cake or sweets of any kind (it’s pretty effective with all of our kids), & although this satisfies him for the moment, it’s not good for him to gorge on cookies all day and that’s when our higher reasoning skills as his caregivers must step in and say no. Luke often wants a lot of things that aren’t good for him – as any child would – playing on his iPad all day, not eating fruits and veggies, trying to walk into the road and so when individuals ask What does he want? it’s a relevant question but sometimes it’s not because Luke doesn’t necessarily know what he needs or wants or may want something that wouldn’t be good for him.

The other day around 7 p.m. Luke’s screaming was relentless. He had eaten a big dinner, taken a long soothing bath, had his juice, was jammied with his iPad in hand, and he just continued to scream. Nothing would make him happy. As you can see from the photo, he often hangs out in this sensory area we created, and his bedroom is inside the smaller door. In the background you’ll notice the safety bed which keeps him secure at night and provides a sense of calm, and you’ll also notice, his bedroom door and bed are wide open for him to access at any point.

This particular night we were finally fed up with trying to determine what was causing his frustration, and in a last ditch effort we gave him his chocolate milk with melatonin, (a ritual since 3 years old), turned on Pandora (which he falls asleep to) and put him to bed – an hour earlier than usual. He didn’t make a peep. All he wanted was to go to bed – with the ritualistic aspect involved – Dad putting him in bed, handing him his milk, turning on his fan, and tucking him in with his blankie – but he, in his limited knowledge and vocabulary, could not instigate this process for himself. He couldn’t and wouldn’t voluntarily lay in bed because that’s not how the process goes in his mind. Dad (or Mom) had to do it.

That’s Luke’s brain to the best of my limited comprehension – his wonderful, miraculous, and unique way of looking at the world. It’s joyful and frustrating and messy and damn near impossible at times, but it’s his reality and ours, and we honor it; accept it; and live with it.

Just keep livin

Introducing The New & Improved JESSPLUSTHEMESS!

This is a quick post – my kids are still home for summer break – to tell you all –

I HAVE A NEW WEBSITE!

This has been months (maybe even close to a year!) in the making. I officially went live yesterday, and I am so incredibly proud of how it all turned out. Lisa Delaney has been the epitome of patience as she has sought to bring my vision of rustic jessplusthemess charm to life, and she succeeded beautifully.

There are lots of changes you’ll initially notice as the blog is no longer the focal part of the website as I seek to expand my jessplusthemess brand to include: merchandise, speaking, favorites, and recipes to name a few.

So, go ahead – poke around a bit. The Favorites and Store tabs are still a work in progress but the store will soon offer super hip and inspirational “just keep livin” apparel and the favorites will be all of my favorite things in life.

Oh, and as you’ll also see, if you subscribe to receive emails from me – which honestly, will just be blog updates for awhile until I find time to create a newsletter, you will also receive the introduction and first chapter of Sunlight Burning at Midnight FOR FREE!

Thank you as always to all of you who continue to support me on this wild ride I get to call my life.

Just keep livin!

Launch Day For Sunlight Burning at Midnight

bookpic.jpgToday is Launch Day.  The official day where twelve years of hard work and desire come to fruition.  Desire to write through Luke’s diagnosis.  Desire to write through Jason’s cancer.  Desire to take all of those writings and turn it into a memoir of hope and call is Sunlight Burning at Midnight.  Today is the day it all happens and honestly?  It’s been a low key, quiet kind of day. There has been so much build up and hype – my heart and soul poured into this this whole process now for a really long time that today I took a step back and just was.  By that statement I mean I accomplished things unrelated to the book or social media or marketing or anything along those lines, and instead, I cleaned the kitchen.  I made homemade tortillas and coleslaw.  I slow cooked a chicken curry for hours, the delicious smell tempting me back into the kitchen time and time again to stir and to taste, of course.  I walked with my baby and met my other half for lunch. It was a good day. A day of doing for my family and not so much for me.

Launch Day is kind of interesting really.  Many of you have had copies in hand for weeks now due to the books that I’ve offered on this site and my Facebook page. To those of you who have received and read your pre-ordered copies, thank you for the kind words and encouragement. Thank you as well to those of you who have graciously shared those kind words in an Amazon review (those reviews really help new authors!). Thank you from the bottom of my being because it is oftentimes (like always!) a frightening thing to put your soul on paper for the whole world to read, and thank you for being gentle with my soul. 

The significance of Launch Day? Well, I suppose this means that the book is now available in most places (the ebook will be available this weekend). I suppose this also means that the book may start to reach people who might not be as gentle with my soul because they haven’t been along for the whole journey so maybe I need to brace for some of that (sorry, I have a bit of pessimism left in me).  I suppose it also means that my story might reach and touch and encourage a whole new audience – a whole new group of people might begin to turn their gaze to the Heavens for answers and Lord knows, we need people to turn their gaze in this direction more than ever before. 

Launch Day is really just a simple day for this mom of eight.  It’s been quite the ride getting here, and I think now that it’s finally here, I might rest a bit.  I’ve got babies to raise and students to teach and teenagers to help through their issues (and they have a few) and a husband to love.  I’ll put down my phone more often, close my laptop, and try to be just a little more present for my family until God pricks at my heart to pick up my pen once again – and I will – I just need to live it first.  

Just keep livin!

(P.S. I will continue to autograph books that are ordered on the website and the Facebook page).