There are so many great articles giving advice about caring for a special needs child, but I know there is only so much we can take on board at a time.
It’s not earth-shattering, I just wanted to share one of the things that helped me.
One tip that brought me a little peace while caring for a special needs child:
A Go Bag
Not for my child (although I had that too), Matthew’s developed unconsciously overtime, most of the things contained in it he required every where he went.
Then there were the “just in case” things that got added. Then the regular things you might expect to find in the kinder bag of a little boy. A change of clothes for example.
But mine took far to long to even occur to me.
Take a moment to consider your needs
One memory of wishing I had such a thing as a go bag (hold on it might be TMI) was waking up in the emergency department.
We had been there all night. I slept on one of those fold down arm chairs.
As I sat up I knew something was amiss. Off to the toilet to find I had bled through my jeans – I didn’t even know I had my period.
It must have start while I was asleep in ED.
What was I going to do now?
Well, thank heaven I was in the Royal Children’s Hospital. They have an excellent family hub, so the second they opened I was there.
They provided me with spare leggings, a brand new packet of undies, toiletries and a towel to go off and shower.
Other times would be the moments I was trying to update the family, and my phone goes dead in my hand.
Or having come in by ambulance realising that all I can do is sit, watch and wait to see what happens with Matthew.
So I needed a distraction, or work to direct my thoughts for while.
What Else Could Happen While Caring for a Special Need Child?
Another classic moment is being at a friends party once with the family, at a cute little bar/restaurant, a room filled with our peers, and my friends close family.
Sitting chatting away & there is a sound from down under.
Yep coming from Matthew, I don’t remember clearly but expect everyone I was sitting with heard it.
Next thing he has overflowed his nappy with all the sounds effects and smell that you can possibly imagine.
Now as he was sitting on my lap, it not only got all over him, but all over my lap!
Poop covered my nice dress pants!
I cleaned Matthew up and he was not bothered in the slightest. Not have a change of clothes, I spent ages in the car park scrubbing my pants.
I eventually went back inside, but only long enough for my pants to start drying. Oh man…that’s when we made a tactical retreat, bummed to miss out on a pleasant evening.
It wasn’t the only moment where Matthew’s bowels ruined my outfit unfortunately.
Some suggestions for taking care of you
Over the years I developed a complete set of routines to keep everything ticking over while I juggled caring for a special needs child with being a wife, mother to two typical children, looking after the house and running a business (which I had even changed to something I could run on my phone.)
So here are the things that ended up in my Go Bag:
Depending on your hospital or situation that you need to be prepared just in case for; a power bank.
I never had an ipad before Matthew and I hardly use one now that I am no longer caring for a special needs child. But it was invaluable for Matthew.
Matthew learned to turn music on and off, with the switch connected to the ipad. He also listened to things like the wiggles on youtube.
On top of that, I also ran the business I started when he was two years old easily using the iPad for video conferencing.
& of course don’t forget the netflix potential!
You’ll also want to make sure you take along it’s charger.
Change of clothes
By change of clothes I mean everything, and make sure I had a jumper. It’s sucky to be stuck in the cold for hours without one. Especially overnight when there is no bedding left for parents.
I included multiple sets of underwear, as sometimes it would take a few days to get my head around organising more clothes for myself.
Something to sleep in
Not everyone is into sleeping in proper pjs while staying in the hospital, they’d prefer to not have their child’s specialists and random strangers see them that way.
One morning I was in my heart printed jammies from my 21st. I would normally get dressed in the morning before doctors & therapist started their rounds.
Except I realised my only pair of pants was still in the laundry.
I’d have to make that long walk through a busy hallway and definitely run into people I know in my pjs. Ha.
Some are totally fine with it, I definitely saw lots of mums rocking it. I’m a bit of both.
So I’d make sure I had comfy trackies & t-shirt to sleep in, safely packed in my go-bag.
I used this for both therapeutic brain dumping of stuff I had going. As someone who struggled with winding down at night it was very helpful.
Diarising events that had happened. Notes to remember to tell the doctors or other team members.
Pen – or pens!
Self-explanatory, and way better than trying to ask a nurse to borrow a pen.
My energy boost for the morning, my drops to help clear my head and my capsules to help me sleep!
I know when packing my bag I didn’t want to end up carrying around the kitchen sink. But the difference these made to me mean’t on times I ran out it was the first thing I asked hubby for!
Obviously, your daily basics & I included my skincare.
There is something very comforting about having those things from home, to take a moment for some normal routines.
I discovered how great a self-care moment it was to have good skin-care after a long night in hospital, especially when I knew the day would be just as long.