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

Mom! Don’t Bring Luke!

A few weeks ago, on a particularly warm summer day, Ryan and I announced to our crew –

Kids! You’ve been so helpful lately and did your chores without complaining so we’re going to have a family fun day at a water park!

Kids responded with glee and excitement and Yays! all around and asked –

Who’s going to watch Luke?

We’re going to bring him, we replied.

He’ll enjoy getting out of the house. 

Mom!!!!! NO!!!! bellowed the sounds of despair. We’ll have to leave early if Luke comes!

This is a constant dilemma we face.

We brought him.
He did make it very difficult and tiring.

We did have to leave early because Ryan and I were absolutely beat after a few hours of fun.

We arrived around 11:00 a.m. because this particular event had free food (major bonus with our crew!). We loaded all eight plates full of grub, and then Ryan retreated to the furthest corner of the park, in the shade, to feed Luke so that the stimulation of all of the people didn’t overwhelm either of them and so he wouldn’t try to grab the food off others plates (Luke not Ryan). I picked a table near the food because I knew my tribe was going to take full advantage of the free factor.

Mya took charge of Annabelle as she skitted about, and the rest were free to roam independently. Ryan and I took 20 minute intervals engaging with Luke. A word here – Luke is no longer content to sit. EVER. He has declared a mutiny on his stroller and wants nothing to do with it, but he needs constant supervision and assistance for his and others safety. We took turns introducing him to the parks plethora of activities – 5 slides, numerous water features, an accessible swing, acres of land to explore, lots and lots of hot dogs because he wouldn’t eat the chips or watermelon or popsicles.

About 3 hours later Ryan and I looked at each other and we knew – we were done. Physically, mentally and emotionally, and we also knew our kids wouldn’t be happy about it.

Let’s give them the 30 minute warning

My wise husband suggested.

We did.

The moans of disappointed began –

Luke always makes us leave early! Why can’t we find a babysitter for him? Why can’t you and dad drive separately? (Which maybe we should have but the park was about 45 minutes from our house)

WHY DO WE HAVE TO BRING LUKE? They wailed

And we responded, frustrated as well and exhausted, questioning the excuse we offered-

Because he’s part of our family, and we need to include him occasionally. 

We currently do not have a solution for this problem.

It is what it is.

We do feel the need to include Luke – even at the expense of his siblings happiness, but we understand their frustration as well.

This post is simply to bring awareness; the little things that special needs families struggle with such as decisions that sometimes cause pain for other family members. I do believe that our children will be better human beings in the long run for having Luke in their life as they have patience, flexibility, and independence that other kids may lack. They have also learned compassion and acceptance towards those who might not be just like them – those who might cause a bit of a disruption to their happiness – those like Luke.

 

Just keep livin.

Manna for the Moment

Luke has been back in school for about a week now.

Experts claim that special needs caretakers often experience PTSD, and I particularly notice this tendency when I don’t have him on my radar for an extended period of time.

Every 30 minutes or so, I ignore the sounds around me – the whir of the washing machine, the chattering of my four year old, the constant buzz of lawnmowers outside – I ignore the background noise and selectively pinpoint my hearing to the basement – listening intently for Luke – listening for either a scream of “ALL DONE!” or, lately “WIGGLES!” which really just means I don’t like what I’m doing or watching so please offer 500 additional options, and then I’ll agree to one of them by telling you – “BYE! BYE!” Or I wander aimlessly to my bedroom where I check the 24/7 surveillance monitor, but there are no screams and the image on the screen is empty.

And every couple of hours I find myself in the basement, lost, having forgotten what I came for, but my body can’t forget the summer routine, and I breathe deeply – quickly checking for any indication that there may be a diaper to change but there isn’t. There are only the remains of Luke’s favorites: his iPad – in need of charging before he arrives home and numerous sippy cups scattered about that need cleaning – the only cups he will drink from.

And like clock work, morning, noon, and night I ask myself “What am I going to feed Luke today, and do we have those ingredients?” Due to sensory issues, I often prepare his meals separately, and due to my desire for him to eat healthy food, I will go the extra mile to hide the zucchini and green beans.

This is the process of PTSD for caretakers – always being on, always having our senses at high alert; always being at the beckon call of another. It is a refining process like no other; a constant laying down of our life and our desires for someone who is unable to care for themselves. It is a holy calling; it is an exhaustive undertaking. It takes patience and self care and sometimes righteous anger and unrelenting faith – faith in meaning beyond ourselves for that’s why we do it, right? Why we rise to the calling and fulfill the mundane and monotonous tasks day in and day out.

And somehow, gloriously – miraculously really – as the sun appears, or maybe it doesn’t some days, we are greeted yet again with the gift of time which will bring fresh grace and new mercies served alongside lots of lukewarm coffee as we hurriedly offer a familiar prayer – “Give us this day, our daily bread” – like fresh manna from Heaven – manna for the moment – and that is enough. It has to be enough.

Just keep livin.

Dream Team Coloring Book – A Dream Come True for One Educator.

It all started when I was an 8th grade literature teacher. I remember pacing near the whiteboard, looking at my teacher’s manual, when I noticed a quote in the book I hadn’t seen before. I wish I knew the quote (and I’ve searched for it many times), but essentially it said this: “How do you know when a society values a person? When you see that person in their children’s literature.”  I remember at the time being so struck by this idea, and how this seemingly simple concept was quite a good litmus test.

Fast-forward six years and I was now a mom to my beautiful four-year-old daughter with profound special needs. My husband and I met Abiella when she was living in Ghana and finalized her adoption a few months before her second birthday. As soon as she turned three she began attending an inclusive preschool. In her classroom, fifty percent of the students had special needs, and fifty percent did not.

On one of her afternoons off from school, I found myself in a familiar scene: my daughter was relaxing on a quilt on our living room floor while I was searching through our baskets of books and toys to grab something she might find entertaining. As I pilfered through our dozens and dozens of options, all of a sudden I was back in my classroom, standing as a teacher in the front of the room, reading that quote. In that moment, it dawned on me that out of the massive number of children’s books, activity books, coloring books, and games in our house- not one had a single picture that represented her or her world. Was it possible that my daughter had never seen herself in a piece of literature?

I began thinking about her other friends at school. Had they seen themselves? What about the young child with a tracheostomy- had he seen himself? What about the young friend with a limb difference- had she seen herself?

I later found that yes, there are pieces of literature out there (thank goodness), that are very often created by other parents facing a similar gap. I decided there could always be more and that I wanted to add to that body of work.

With the help of an illustrator, I began the process of creating an inclusive coloring book. I modeled it off my daughter’s pre-school experience. Among the pages, there are many stories. There are children who use walkers, wheelchairs, braces, splints, and sensory headphones. There are also members of The Dream Team who do not have hair, have limb differences, or breathe with a tracheostomy. I also included a happy hospital scene, as many children with medical challenges often spend quite a bit of time in these environments.  Additionally, you will be introduced to amazing children who do not have a diagnosis or perhaps have a special need that is invisible. All of these children are a part of The Dream Team (Volume 1): A group of kids who love hanging out, living life together, and enjoying the awesome magic of inclusion.

While I certainly couldn’t fit every situation into a 20 page book, I do believe it’s a start. Illustrations range from simple to complex and my hope is that individuals with unique circumstances might see themselves portrayed in a happy, positive way. Lastly, I hope this book offers a place for curious minds to ask questions when they see something that feels unfamiliar. It is certainly a coloring book for everyone.

The Dream Team Coloring Book is a free resource, and since I hit publish two months ago, it has been downloaded nearly 700 times. Many individuals have told me they are also making copies for their classrooms, clinics, family and more. This is incredibly exciting and I absolutely love seeing pictures of young children putting their own touch on these awesome pictures.

The book can be found on my website at www.marysusanmcconnell.com/dreamteamcoloringbook . It can also be uploaded into various devices, allowing individuals (like my daughter) who color with assistive technology to have fun with the pages as well.

This coloring book was a joy to create and it has been an enormous thrill to see it out in the world being enjoyed by families across the globe. Thank you Jess for the opportunity to share the book on your incredible platform.

– Mary Susan

  • Mary Susan McConnell is the host of the popular Mama Bear Podcast, a space she created for fellow women raising children with special needs. As a former middle school teacher, she has her Master’s in Curriculum, Instruction, and Assessment and is currently working on her Doctorate in Special Education. She is also the creator of the inclusive Dream Team Coloring Book, a free resource she developed to provide an opportunity for children with a variety of unique circumstances to see themselves in literature. In her spare time, Mary Susan likes to make pottery in her at-home studio. She resides in Tennessee with her husband, 8 year old daughter, 16 year old dog, and 10 chickens.