Organization Is Key For Special Needs Parents

I consider myself a B-type personality.  Easygoing, laid back, flexible, and creative.  I didn’t stress too much and just went with the flow.  Starting in 2003 when our oldest son was born with disabilities, that began to change.  Why?  Because I learned that organization is key for special needs parents.

Nowadays, I call myself a reluctant A-type personality.  I am organized, on time, have lists for everything, and manage my family and caregivers like a general preparing for battle.

Calendars

My first battles with organization occurred when I was no longer able to keep our family’s appointments in my head.  There were just too many of them!  My mom gave me one of those 2-year pocket calendars you can get at the dollar store.  They worked okay, but not great. I still hated having to run my life according to a calendar.

Online calendars

Once the smartphone age hit, I started putting all our appointments into the phone and setting reminders. That worked much better for me.  My husband is doing the same thing now and we share our calendars. This comes in handy as sometimes we have to fight over the wheelchair van!

But even though we are using our phones, I still need and want a physical planner. I have one that I use as my master planner.  It has our personal appointments, my work schedule, and my to-do list for the week.

I hung a whiteboard near the front door where I write down my work schedule and weekly appointments. This way, everyone could see what we have going on.

I have used this system for the past 3-4 years and it has been working well for us.

Supplies

C-Bear’s supplies have always been an issue.  Every month he gets cases of medical-grade formula and everything else that goes along with having a g-tube and using a feeding pump.

And then there are the incontinence supplies – cases of diapers and wipes that I have to store somewhere.

I thought all those supplies were hard to organize but when C-Bear got a tracheostomy and went on a ventilator and oxygen in 2021, oh boy!

Before we brought him home the first time after the trach in 2021, we had to completely gut his room.  We had to get rid of his bed to make room for a hospital bed, not to mention the HUGE oxygen backup tank and 7 smaller tanks, the oxygen generator, suction machine, ventilator, humidifier, air purifier, and all the supplies that are needed when someone has a trach.

Storage cubbies

We had 2 – 6 cubby shelves in his room and bought 1 more plus 2 – 9 cubby shelves from Amazon and the baskets to fit the cubbies.

I purchased 2 nightstands from Amazon, and my husband mounted a board between them to make a place big enough to hold the ventilator, cool air compressor, suction machine, humidifier, and nebulizer.

All his toys that he didn’t play with are currently regulated to the shed while the rest are in a laundry basket under his bed along with the trach supply overflow.

Another whiteboard

C-Bear has his own whiteboard in his room.  I have one section to write down his appointments so his caregivers know when they are, what time we need to leave, and what city we are going to.  I also have a section where I write down any medication changes or PRN meds that he is on with the start and stop dates and dosage and times.  

We have a section where we note when certain tasks have been done such as g-tube changes, tubing changes, etc.  I also tape a copy of C-Bear’s current med list to the board so everyone can reference it as needed.

C-Bear’s room organization

We have a dresser and closet for clothes, and a two-shelf unit for blankets, sheets, bed pads, and pillowcases. We use laundry baskets under his bed to store toys and of course for his laundry!

C-Bear loves movies and music and has more of a collection than I realized. This DVD/CD organizer from Amazon allows me to store all the disks (without their cases) to free up more room on his shelves.

(see this article for more information on storage in C-Bear’s room)

Note:

For reference, I am not an Amazon affiliate and receive no compensation from them, monetary or otherwise, if you purchase through any of the links in this post.  These are just my honest opinions about items that I have purchased for my family through the years.

Modifications and additions

For carrying supplies when we are out and about, C-Bear’s wheelchair was modified to hold an oxygen tank and ventilator.  The suction machine came with a bag that we hang over the wheelchair handles and carry his diapers, wipes, and changing pad in another backpack.  

His room is still filled to bursting with everything that is in it and is very much a work in progress. I am always looking for new organization hacks I can use for him!

In January of 2021, C-Bear got approved for Make-a-Wish and got a small shed that is supposed to be his therapy room so his bedroom can just be a bedroom.

But will all the changes that he went through last year with getting the trach, his therapy room is more of an overflow room at the moment.  I really want to finish painting the inside and getting the floor installed so that he can finally use it.  I just need to figure out what I am going to do with all the stuff that we put in there…

A work in process

This is just a snapshot of what we currently have in place to help with our organization.  I am always perusing Pinterest to find new ideas and hacks that we can use.  If you have tips and hacks that worked for you, speak up and share them!

Other posts:
Preparing for a public emergency
School for a special needs child

Family Organizations:
Practical Perfection – great organization tips on all kinds of topics!!
The Homes I Have Made – I love her tips on organizing!