My Day As A Parent Of A Disabled Child
For those of us who have kids with any kind of disability, one common comment that we hear over and over and OVER, is “I don’t know how you do it.” This post is for the people that make those comments. If you really want to know how I do it, here is my current schedule.
My day pretty much follows this schedule, day in and day out, unless there are doctor appointments in there somewhere. On this schedule, I work about 30 hours a week for my paid job and about 88 (unpaid) hours a week with C-Bear.
Welcome to my world!
Exhaustion is my middle name. On the wall above my computer, I have a copy of the meme that shows a frazzled parrot with a cup of coffee that says; “I am not an early bird or a night owl. I am some form of a permanently exhausted pigeon.” That is me in a nutshell. That is my day.
I am always hopeful that I will find more support workers. Ones who aren’t intimidated by C-Bear and his equipment, that want to work more than a month or two, and who are willing to stay awake for their whole shift. Until then, welcome to my day, welcome to my world.
Monday
2 am Night shift support worker leaves and my shift starts
6 am Day shift support worker arrives and I take a nap
9 am Wake up, take a shower, and eat breakfast
10 am Start my work-from-home job
1 pm Eat lunch
4 pm Day shift support worker leaves and my shift starts (ends at 6 am Tuesday)
5 pm My job ends for the day
7 pm Start C-Bear dinner and give nebulizer. Start homeschooling M-Bear
10 pm Give C-Bear evening meds
10:30 PM C-Bear dinner ends. Get him ready for bed
11 pm Start C-Bear nebulizer. Put him on the ventilator and put him to bed
Tuesday
3 am Change C-Bear
6 am Day shift support worker arrives and I take a nap
9 am Wake up, take a shower, and eat breakfast
10 am Start my work-from-home job
1 pm Eat lunch
4 pm Day shift support worker leaves and my shift starts (ends at 6 am Wednesday)
5 pm My job ends for the day
7 pm Start C-Bear dinner and give nebulizer. Start homeschooling M-Bear
10 pm Give C-Bear evening meds
10:30 PM C-Bear’s dinner ends. Get him ready for bed
11 pm Start C-Bear’s nebulizer. Put him in bed and start him on the ventilator
Wednesday
3 am Change C-Bear
6 am Day shift support worker arrives and I take a nap
9 am Wake up, take a shower, and eat breakfast
10 am Start my work-from-home job
1 pm Eat lunch
2 pm Night shift support worker arrives and the day shift support worker leaves
5 pm My job ends for the day and I can relax (or take a nap)
6 pm Eat dinner
7 pm Start homeschooling M-Bear
11 pm Go to bed
Thursday
2 am Night shift support worker leaves and my shift starts
6 am Day shift support worker arrives and I take a nap
9 am Wake up, take a shower, and eat breakfast
10 am Start my work-from-home job
1 pm Eat lunch
2 pm Night shift support worker arrives, Day shift support worker leaves
5 pm Work for my job ends and I can relax (or take a nap)
6 pm Eat dinner
7 pm Start homeschooling
11 pm Go to bed
Friday
2 am Night support worker leaves and my shift starts(no day shift on Fridays…)
7 am Change C-Bear, start nebulizer, start morning feeds, and give morning meds
10 am Work my job as I can
11 am Start nebulizer and change C-Bear
11:30 am Put C-Bear in a wheelchair, make his bed, and do laundry
1 pm Start C-Bear lunch, make up another 2 batches of formula, and eat my lunch
2 pm Night shift support worker arrives
5 pm Work for my job ends and I can relax (or take a nap)
6 pm Eat dinner
7 pm Start homeschooling
11 pm Go to bed
Saturday
2 am Night shift support worker leaves and my shift starts
7 am Change C-Bear, start nebulizer, start his breakfast, and give morning meds
8 am Eat my breakfast
11 am Start nebulizer, change C-Bear
11:30 am Put C-Bear in his wheelchair, make the bed, and do laundry
12 pm Eat my lunch
1 pm Start C-Bear lunch, make up another 2 batches of formula, give him his inhaler
2 pm Night Shift support worker arrives
2 pm Relax, do chores, catch up on homeschooling as needed, and maybe take a nap
6 pm Eat Dinner
11 pm Go to bed
Sunday
2 am Night shift support worker leaves and my shift starts
7 am change C-Bear, start nebulizer, start his breakfast, and give morning meds
8 am Eat my breakfast
11 am start nebulizer, change C-Bear
11:30 am put C-Bear in his wheelchair, make his bed and do laundry
12 pm Eat my lunch
1 pm start C-Bear lunch, give him his inhaler, and make up another 2 batches of formula
2:30 pm mid-day meds, put C-Bear in bed for a nap, and change him
5 pm Get C-Bear up, change him, and put him in his wheelchair
6 pm Eat dinner
7 pm Start C-Bear’s dinner
7:30 pm Night shift support worker arrives
I am Momma Bear, hear me roar!
After getting my day down on paper, I feel like Wonder Woman! No wonder I am always tired at the end of my day! I did not put my schedule on paper for pity or acclamations, but to share my truth. C-Bear is my son and I want to take care of him in our home for as long as possible; I wouldn’t change that for the world. To imply that I am going above and beyond what a ‘normal’ parent would do belittles me and discredits the speaker. Any parent would do the same for their children, neurotypical or not.
Is this schedule sustainable? No, of course not, but until I can get us back to full staff, this is what I have to do, and have done for the past two years. But until that day comes, this is my day for the foreseeable future.
How have you and your family handled tough schedules like this? What has helped you to get through it? Feel free to leave your best hacks and tips below.
~ Zilla Q
Other MBB posts:
How to become involved in advocacy
Organization is key
Other posts on different types of schedules & routines:
Routines and Schedules for Children with Special Needs
How to Use Visual Schedules
