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My Autistic son and how we are going to reach him

Adam Crockett
I work at ForgeRock as Staff UI Engineer, I play with all sorts really. Lately WASM is my toy of interest.
・3 min read

Three point five years ago, Logan was born prematurely, he scared me out of my whits! I remember racing to the hospital doing a speed > the speed limit. I don't remember arriving at the car park, only the birthing suite, I burst in to the entrance... The lady said. "Mother and baby haven't been very well, I will take you through in a moment".

I remember the feeling, then thinking, oh god I have lost them, We walked into the hospital together laughing and I will be leaving on my own...

She's taking me in, down some small corridor that felt 10 miles long, I'm crying now as I write this, as I always do... thinking about this moment, I heard something, it grew louder, we want through the double doors. Like a freight train just plowed through my chest, I heard it again, it sounded like a duck! 🦆 it was my son! Me being late as usual, I had missed the birth - shouldn't have taken that shower before I left!

I spent 2 weeks in hospital visiting every day- my girlfriend the hero of this story was suffering, she's not aloud to see him for a few days! I'm his sole carer for the time being, what the hell am I doing, this baby is now in a glass House, I have to step up!
I drive home late, living off junk, energy drinks and Costa coffee.

Finally the day comes, I show my girlfriend what I have learned, how we feed him through a tube up his nose, change him and bath him. Her parents come... Mine, well its personal but I don't have any, not a typical childhood, it's me, I learn to be a dad from this day forward.

Logan was Two when I started to look forward to having conversations, little questions to answer and hearing his voice, then one day he said "doggie", our dog Lizzie the jack, she brought out his first word 👏👏

But then, nothing

Other children, friends of ours, Thier kids all now walking and talking, Logan finally decided to start cruising, one a 2 months later, he walks! It took a while and this is expected, the impact of prematurity is bigger than I had ever understood or anticipated.

He doesn't speak again for at-least six months, he knows maybe 10 words now, we read every night, 3 books a night. It's hard not to compare, we are desperately worried now, he can't or won't talk, our friends kids, full sentences and back chat!

COVID hits, everyone in doors, we spend a long time indoors, he is regressing again, we need to do something fast, we learn British sign language from books from Amazon, everything comes from Amazon now, welcome to the desert that is our house.

He's three now, and we have a few words he finally starts answering questions with no, not grunts... Although I'm now fluent in grunts, we sign around the house, even talk to eachother like this, it's easier for us. A very useful fascinating langue system you should absolutely learn by the way!

The point

Today we try PECS it's a system of communication similar to a Jira board.
3 columns, now, next and later
You stick your pictograms describing an activity to the column, he sees pictures and understands the plan. We think he has autism but it's a really long process in the UK to find out.. We know he hates change.

So to help us all out, we have purchased a pecs board 🤘
It sucks... It works but it sucks because we need more columns sometimes, less sometimes, different pictures. And when he's screaming the house down, we need favourite pictures quick sharp. Lastly like all things of this nature, it's badly drawn, as a UI guy this triggers me... We need an app, there is an app for everything right?
Wrong, I think I need to write one, maybe it will help parents all over the place?

So that's the plan, like many of my plans they never finish. I need a way to make this quick, get it out the door and onto an app store, I know web tech, what should I choose?

Discussion (8)

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inhuofficial profile image
InHuOfficial • Edited

Proloquo2go is the gold standard - but at £250 it is bloody ridiculous!

A free one if your son understands graphics is google.com/amp/s/technologyforgood... that I have heard good things about but it is only Android (or was, not sure if that had changed as it has been nearly a year since I was working on that part of my product research)

However if your son does not understand graphical representations (cannot make associations between abstract images, iconography etc. and real world situations and objects) you may have to do some research for one where you can upload photos yourself.

For people who cannot associate we can take a lead from “easy read documentation”. They recommend images that are isolated on a white background. You can buy a cheap canvas light box for £50 off amazon and take pictures yourself or for really big items just get a roll of white paper and pin it to the wall with a curve between the wall and floor and a couple of stand lights (useful for pictures of bigger items such as bicycles etc).

Or you can buy a load of stock images from photosymbols.com/ - my license ran out otherwise I would just have let you access mine on the quiet! I think it was about £150 a year.

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adam_cyclones profile image
Adam Crockett Author

😳 wow! This is such an insightful comment, lots of fantastic information to process here!

I will ask him about some PECS cards in the morning and see if he can match them to real world things / activities, that will be interesting.

I am honestly lost for words, thank you

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Ricardo Sueiras

Thanks for sharing your story. My son was born at 28 weeks, and has grown to an adult (turn 18 recently) but it has been with its challenges too. He is on the spectrum, and does not really "fit in" to society, which has been super hard as a parent so your post really resonated with me. It has certainly softened me as a human and made me more aware that we need to build a kinder, more inclusive society.

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Adam Crockett Author

I understand the softening completely, for years I built a wall around myself and now, well they say children change you and that's absolutely true.
I can't imagine the complexity of having a teenager just yet (I don't want to 😳) but I can understand that challenge, especially now, at home. Thank you Ricardo, an all around great guy by the way

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Ben Halpern

Thanks for sharing Adam

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adam_cyclones profile image
Adam Crockett Author

I hope to meet other devs with stories like this one day. Dev is a great place to share, thank you to the Forum team!

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reergymerej profile image
ᴙɘɘᴙgYmɘᴙɘj • Edited

Today is our son's birthday. He's high-functioning, but a far cry from easy. Every situation is different and some of them are horribly difficult. As they say, if you know one person with Autism, you know one person with Autism.

For what it's worth from a random internet stranger, I applaud you. Good luck and keep us posted on what you come up with.

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adam_cyclones profile image
Adam Crockett Author

Congratulations (yesterday) 🥳, in theory this app should be FOSS forever and would welcome PRs, but also I will #showdev as soon as I have something 👍thanks for the words of kindness