How my smartphone helps me care for my child with additional needs

Studies are all saying put down our smartphones and hang out with the kids more, stop being so attached to our phones and devices, and overall I agree. There’s a whole world out there and it needs to be seen, experienced and lived. Life, and indeed, success, isn’t measured in how many ‘likes’ a post receives or how many people follow you. Of this I’m pretty sure.

Although I agree that my smartphone has a time and a place to be used, it is more than an entertainment device or standard communication tool. I have so many uses for it that I would be lost (ok maybe not lost but really slowed down), without it. My smartphone has morphed in recent years into a vital tool in dealing with and managing my son’s diagnosis of Duchenne muscular dystrophy.

Just recently, for example, I took my son for an orthotics appointment for shoe insoles. My son was feeling fatigued and sore that morning and although the clinic wasn’t far from the car he had requested his wheelchair as he didn’t feel up to walking inside. When we were called in the clinician asked my son if he could walk to the far side of the room and back so she could see how he carried himself when he walked. My son just did not feel up to it and with the discomfort he was in while walking he was not in the mood to be convinced otherwise.

At that instant I had an ‘a-ha’ moment. Not in the 80’s rock band “Take on Me” sense either. I recalled that I had used my phone to film him walking just a week ago. I whipped out my phone and the clinician was quite impressed with me. I was impressed with me too! I admitted I didn’t know quite what had prompted me that day to film him but it sure was a help to the clinician to understand just how my son’s stride was affected by his turned out foot. Result!

I must confess, I email myself a lot too. When I see an article or blog and I don’t have the opportunity to absorb the content there and then and know it will be hard to find later I email myself the link to read when I have more time. My inbox is filled with these kind of ‘read later’ pieces.

I have apps on my phone that hold medical details about my son that I can access easily. Healthcare card number, Medicare card number, diagnosis letter, phone number of the local hospital pharmacy to be able to order repeat prescriptions, etc. I have learnt over time that all this information is useful to have at hand as I’m asked to quote it more than I this is information handy to have access to as I’m asked to quote it more than I had imagined.

I research and screenshot products or services so I can attach them in emails if if helps clarify or support something I am referring to in an email or text. I’ve even had to resort to sending a photo of my son’s bruised face after a particularly bad fall to spell out to the occupational therapist that I still really wanted her to go to my son’s after-school facility to help them look after my son and that they were still keen to have her there, in fact even more so now! 

I take lots of photos and videos in general. Often, I snap a photo or take a video to try to capture a special moment or feeling. This is probably a contributing factor as to why the memory on my phone is almost full. Looking today at my photo app I can see that I have 4667 photos and videos held on it. Memo to self – have a clean up.

This leads on to using my photos on social media. There are so many free photo apps out there now that take my everyday photos and raise them to another level. I’ve received compliments on their quality. I am able to create so many gorgeous photos and memes to help raise awareness of Duchenne muscular dystrophy around the world.

Raising awareness is one of the few powers I have you see.

My son’s condition doesn’t have a cure, yet. Duchenne is a muscle wasting condition, so in time his body will fail on him and he will lose strength. If raising awareness of his condition helps put a spotlight on it, then it may bring a cure a little bit closer.

And I will have my son for longer.

So, I know the professionals all tell us to put down our phones and play with our kids. As I said, I agree; but while I’m playing or racing around with my kids I may have a phone in my hand because I will be capturing  memories or supporting my son’s healthcare.

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