Zen and the art of special needs equipment

By Natalie Roberts-Mazzeo, Writer, speaker and founder of Miracle Mama

You become many things the moment your beautiful child receives a diagnosis; an advocate, a medical researcher, an investigator, a carer, an administration executive, a taxi driver, a nurse, a doctor, an entertainer, a mind reader and everything else that pertains to being a parent.

Yet there’s probably something else you become, which is something like a mechanic or engineer.

If you have a warrior of a child with physical disabilities, you will most likely have an array of adaptive equipment; for the home, the car, the school and more.

Equipment was introduced to our family very early on, almost a month or two after diagnosis. We had an early intervention team who were able to see what lay ahead of us in terms of our daughter’s needs. To be honest, we had no idea – it was impossible to imagine our little angel grow without the use of her legs, let alone into the need for a wheelchair.

Our equipment path is not the usual one that most parents follow where it’s bassinets to cots, or high-chairs to child seating. For us it’s wildly different, with each piece of equipment needing extensive trials and input required from specialists such as an occupational therapist or physiotherapist.

It’s also vastly different in that most parents would find a piece of equipment for their child, trial it in store and then buy it. Done. For us special needs parents however, it’s not that simple. Sometimes it’s smooth sailing, but at other times it can get a little complex. Like this:

• Early Intervention meeting to decipher the specific equipment need.
• Phone calls and emails to co-ordinate sales rep, O.T and physio.
• Meeting with everyone which can take hours.
• Hoping that your child will stay calm through the trial process.
• Sales rep filling your house with many pieces of adaptive equipment.
• You watch on but your head is spinning and you kind of want to cry because it all feels a little too confronting.
• You’re also thinking about how you could knock down a few walls to create space for all this equipment in the home, think warehouse style!
• You watch on as your child is placed in and out of various pieces of equipment that all needs settings adjusted to fit their body’s size and shape.
• You still feel like you want to cry but also confused as you know you both need this equipment in order to access the world.
• Then comes the application process for funding because, hello, the price tags have lots of extra zeroes on the end of them!
• Then there’s the medical team who have to provide letters to support the need for the specific item.
• Then you start crying again because you have just read a very clinical medical letter about your child and their abilities, or lack thereof, and it sounds devastating.
• Then you also need a letter from the specialists, ie the OT or physiotherapist so you need funding for that too.
• Then you wait.
• Then you wait some more.
• Then you make some phone calls because it’s been a month.
• Then you call some more.
• Then you start to cry again because it’s stressful trying to manage your child’s body in current equipment that is not suitable or adaptive.
• Then they cry because they are not comfortable. Maybe it’s their tone, maybe they need more lateral supports, maybe they want to be held.
• Then you call and learn to advocate through tears.
• Then you finally receive a letter (sometimes months later, sometimes sooner!) that the application has been approved.
• Then you get confused because you think the approval equates to delivery of said item.
• Meanwhile, your child gets more and more unsettled and it gets more and more difficult to manage them.
• Everyone in the house feels stressed.
• Then you call again to find that the request has been moved from SWEP to NDIA for someone else to approve.
• Then you try not to cry, and you breathe and practice your calming down tactics so you don’t stress more than you already have.
• Then your body starts to get sore because you’ve been lifting and holding more than usual because you don’t have the right equipment.. yet.
• Then you make a few more calls, write a few more emails.
• Then finally, somewhere along the line you get a call that your equipment has been approved. Even though you were previously advised that it was already approved (go figure?!)
• Then you call the sales rep, the OT, the physio to say YAY it’s been approved.
• Then they advise that the NDIS needs to pay the provider of the equipment.
• Then you call the NDIS and hold, and wait, and explain and repeat.
• Then you lift, carry, move, hold, feed and provide extraordinary care for your little one while all this goes on. *Picture mum holding phone, holding child, holding feeding tools and so on.
• Picture the house in a kind of chaos because you haven’t been able to clean – because you’ve been on hold on the phone for way too long. You also haven’t been able to leave the house, because you literally reply on adaptive equipment to do so.
• Then you find out that the equipment has been paid for, but sometimes it may be sitting in a warehouse somewhere waiting for some golden fairy to magically deliver it.
• So you make a few more calls.
• Finally, the day comes when the equipment arrives.
• But before that you need to coordinate a date that the OT or physio is available to set up the equipment to manage the specific needs of your child.
• You smile but you kind of still want to cry because this wasn’t what you expected for your parenting journey.
• Then after all the settings have been adjusted you trial your child in the equipment, holding your breathe, because well, it’s been months since the trial and who knows if they will still manage it?
• You let a deep sigh out, because yay, you see your child smile.
• Everyone is happy.
• Mum gets all insta happy and wants to share with the world one photo that to many looks like a beautiful happy girl in a new piece of equipment: ie: standing frame, bike, wheelchair.
• People comment, ‘wow she looks so happy’.
• Mum smiles because if only they knew!
• Then, a few weeks later some part of the equipment has moved and needs adjusting.
• Mum and Dad get the instruction manual out.
• Mum and Dad may also let out a few superlatives.
• You child is crying and then almost screaming, and now the equipment is not so much fun.
• You need to learn how to fix, move, adjust, lever, lift, spin something on this heavy bit of adaptive equipment.
• You need to engineer props and things to make it work!
• You are not so mechanically minded because you haven’t slept properly in years.
• You look at the equipment with contempt but you know it’s needed.
• You understand that gratitude is everything, but you are still human.
• You look back at the instruction manual and spare tool kit and wonder why you have extra screws and bolts once you thought you fixed it.
• You finally get out of the house; mum and dad are happy, the whole family is happy.
• Mum gets all Instagram happy and shares with the world again.
• People comment, ‘wow Chiara looks so relaxed and happy’.
• Mum smiles and feels like her family have just made it to the summit of Mount Everest.
• Mum smiles again knowing that a photo literally does tell – a thousand words!