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

Blessed Are the Meek

August is here – a month drenched in significance and redemption.

A month when Luke was born

And Jason died.

And three of my children said good bye to a mother.

Luke, who was declared terminal at 20 weeks in utero. Luke, who was never supposed to see the light of day & yet defied every odd when he came screaming into this world on August 12, 2004.

Jason, my late husband, a personal trainer and tennis pro- took his last breath on August 24, 2010 & entered the most beautiful light of day when he won his eternal race and accepted the crown of life.

Tate, Mya, and Jada – four days later, August 28, 2010, mourned the loss of their mother – a deep ache that no child should ever have to bear.

Three stories.

Each one intertwined to form a bigger story.

The eternal symbolism is never lost on me.

His strength is made perfect in our weakness.

A strong father who fought for three years – gone.

A young mother full of life and four months later – gone.

A little boy, the meekest of the meek, declared dead and 15 years later, living and thriving and spreading the message of hope with every step he takes.

His ways are never our ways.

“For I am God and you are not” thus sayeth the Lord of Hosts.

Blessed are the meek
And the weak
And the lonely
And those gasping for one more breath
And those with IV’s in their arms
And those swallowing big pills
For even bigger problems
And those seeped in depression
And those on food stamps
And those writhing in addiction
And those who aren’t sure they can make it one more day
Blessed are the single moms
And the dads too
And those crying out for relief
And those living in the shadows
Or those weeping beside a grave
Blessed are all of the Luke’s who came defiantly screaming into this world
With a gigantic F*#% YOU!
PG version –
Of course
And blessed are YOU
And you
And you
And you
The meek of this world
The lost
The forgotten
Blessed are YOU for you shall inherit the earth.

Just keep livin.

A Day in the Life of a Special Needs Caretaker – Questions Answered

A few weeks ago I posted a documentary called Life of Luke which detailed the day in the life of our son Lucas who has special needs or more specifically, it detailed a day in the life of a special need’s caretaker, yours truly.  This short video has received over 900 views on YouTube and has led to insightful discussions and questions in regard to what it’s like raising Luke.  I’ve mentioned before, I LOVE diving into this topic – especially when it’s done in a respectful and life-giving way.  There are difficulties and challenges associated with raising a child like Luke, as there are with any child and there always will be! – but if our challenges can lead to awareness and resources for families like mine, then I’ll continue to write and post about the realities of our life.

This documentary helped open the eyes of many individuals including a few who said, “Jess, I had no idea that you needed special equipment for your child.  It just never crossed my mind.” As these comments and questions poured in, I decided that it would be helpful to answer them on the blog.  Today’s post will address the different types of equipment we have for Luke and how we obtain it.

First, we have used a wonderful company called Independence on Wheels for the majority of our adaptive equipment needs here in Tennessee.  I love working with this company as they come to me, they fill out all of the paper work, and they make the referral calls – which as any parent of a special need’s child knows, is huge.  I think I’ve spent a third of my life filling out paperwork for Luke. No joke.

Our most recent piece of equipment obtained through this company is the car seat. This was a life changer.  When we lived in rural Tennessee, I would drive about 30 minutes to and from Luke’s school.  Luke didn’t enjoy this long car ride and would often scream.  One day, he was bored and figured out how to wiggle his way out of the seat belt and found his way to the front of the van while I was driving! This was disastrous and led to multiple detours of pulling over to the side of the road and trying to wrangle him into his seat belt once again in a way where he couldn’t escape. I called the company, they arrived within the week, and we ordered the car seat which took a couple of months to secure. He can not get out of this – praise Jesus.

We also utilize a stroller/wheelchair for Luke which was absolutely necessary when he was younger, but he’s not real interested in it anymore as his walking continues to improve. It is still a necessary convenience when he needs to be restrained because we can’t walk with him forever despite his insistence for it.

The Rifton activity chair which he doesn’t really associate with activities but more so with food.  We are currently looking for a chair (that doesn’t cost thousands of dollars) that he would keep him safe (so probably a restraint), allow for some independence, and one that he might learn to associate with activities rather than eating. The Rifton chair is manufactured in a similar way as a large high chair. There’s a strap to use if necessary but we haven’t had to utilize it as the tray keeps him in place and he’s happy as the food continues coming his way.

His bed – which in all honestly, looks a little bit like a jail but came highly recommended from the company Independence on Wheels.  This bed has been great as the double doors swing open wide enough for him to come and go as he pleases and can serve as a giant changing table for clothes, shoes, etc. We paid extra for the foam cushions that attached (past tense) all the way around the bed on the inside via Velcro strips – well, that was their original purpose; however, Luke managed to rip them off one morning, and we found him buried beneath the pile. We improvised and ran them along the outside of the bed for additional safety purposes. This bed offers a cozy, compact environment for Luke which he finds comfort in along with an easy clean mattress made out of vinyl.  Again, it is void of sheets, pillows, and extra blankets because Luke will have none of that nonsense.  He will rip them off and throw it out faster than you can put it in there.  I don’t claim to understand all the musings that occur in this child’s brain.

Finally, his braces. He is fitted for a new pair every year or two, and they have assisted greatly in his ability to walk.

That’s it. In the next few weeks I’ll give you a sneak peak into a surprise we’ve been planning and answer the question, “Does Luke Play?” or, maybe I’ll let Luke answer that question with a live demonstration.

Just Keep Livin!

Life of Luke – A Day in the Life of a Special Need’s Caretaker

Here it is. A day in the life of Luke or more specifically, a day in the life of a special need’s caretaker – yours truly.

Honestly, it’s kind of scary to put our life out there like this. It’s one thing to write the truth with the freedom of choosing words that paint the perception I want to offer, and it’s a whole other experience to actually show the truth – messy fingers, annoyance, and zero makeup. What if people don’t agree with how we’ve chosen to operate our lives with a special need’s child? What if they mock how we look? How I look?! Can I handle this? We shall see.

Most of what you will witness can speak for itself but some of the footage portrayed needs an additional explanation.

1. Luke’s official diagnosis is SXI – severe multiple impairments. Luke has a shunt because in theory he suffered a stroke in utero. Luke is extremely healthy. Luke continues to progress in every aspect of his life which is a blessing and a difficulty because he’s not very content most of the time.

2. You may notice a lack of sheets, pillows or blankets on his bed. This is a sensitivity issue for him. For some reason he only wants the big blue blanket.  If we put sheets or pillows or additional blankets in his bed, he will rip them off and get rid of them asap.  He usually wears a footie sleeper for warmth.

3. Luke’s wheelchair. Yes, Luke has a wheelchair.  No, he’s usually not super excited about sitting in it.  He won’t sit in it if we aren’t moving so putting him in his wheelchair to hang out with the family isn’t an option.  If we were to attempt this, Luke would begin violently thrashing his body back and forth – the chair moving as well – while offering a high pitched awful sounding scream.  This would continue until he either hurt himself or we removed him from the chair.

4. Luke rarely eats meals with us as you’ll notice in the video. His feeding chair doesn’t fit well in our smaller dining room and even if it did, we probably wouldn’t want Luke at the dinner table. Meal time is already intense with 8 kids. Luke was blessed with his mother’s long, thin, monkey arms. These arms are capable of reaching almost anything including all of the dinner plates and food. Luke also has a tendency to scream a lot – especially when hungry. So the grabbing and the screaming and the shuffling all of food out of the way, and the additional little voices lending to the grand cacophony of noise and chaos is just too much, and we made the decision, on behalf of our sanity, to feed Luke first followed by a bath, get him settled into his bed, and then eat dinner with the rest of the kids.

This documentary is just a mom with an Ipad portraying her child with profound special needs so obviously not a recipe for the most professional work of art you’ll ever see. I apologize for any sound issues, all the “ummmms”, and use of “ok and so” about 500 times. I apparently lack an extensive speaking vocabulary. FYI – I am very open to a professional invading our life if there’s a film maker who would like to tackle this project and give it a more polished (or brand new!) look. In the meantime YOU dear blog reader can help spread the word by liking, sharing, and commenting on this post. By engaging in some small way, you are helping special needs caretakers raise awareness which will in turn (eventually) lend to more support and resources for our families. You can also follow along on Luke’s journey by finding him on Instagram at Life of Luke or the whole family at jessplusthemess on Instagram and Facebook.

Finally, I am open to questions as long as they are respectful. The second anyone turns disrespectful towards me, my child, or anyone in my family, or come after me anonymously, I will cut you off. Period. I ain’t got no time for that. Enjoy and Just Keep Livin!