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!