I try to practise positivity and strive to see the good in everything. It’s part personality, part determination, I guess.
I honestly don’t see the point in dwelling on the negatives. I would much rather acknowledge that something is wrong and concentrate on improving the situation, rather than waste my time complaining about it.
Or, if that fails, laughing at my own expense is also a great way to get a grip and get over myself!
This is the way I’ve been able to find the positives in autism over the years, something which can be hard to do, considering all the challenges that come with an autism diagnosis.
In some ways, this year has been a great year for all of us. Our son, Gilbert, has done well in his final year of primary school and has been offered a place in a gifted and talented program at his local high school for next year. Our daughter, Matilda, has found her feet in Cub Scouts and has nearly completed her work for a Grey Wolf award.
These are both achievements I would never have imagined when I first received their autism diagnoses.
But amid these triumphs, the reality of daily life with autism still bites (hard) each and every day.
Autism is a funny beast. It’s big and small all at once. It can represent huge challenges at times, while at other moments, it can make all the little things hard.
The reality of autism makes its presence known in every part of everyday life – sleeping, eating, dressing, cleaning, talking, thinking, writing, listening and travelling. Nearly every part of my son’s life, in particular, is ruled by autism, as you can see by the example below:
- He can’t go to bed at night and settle down until we are in bed too (sleeping)
- He prefers crunchy food and will not go near healthy stuff (eating)
- He insists on having his clothes laid out the night before school and becomes distressed if this can’t be done (dressing)
- He melts down if he happens to get the smallest amount of food or drink on his clothing (cleaning)
- He is obsessed with swear words and inappropriate language at the moment and cannot control his outbursts (talking)
- He tends to overthink issues and works himself up into a frenzy of anxiety (thinking)
- His handwriting is nearly illegible so he relies on writing in his iPad journal each day to process his thoughts and feelings (writing)
- He tends to hear what he wants to hear, rather than hearing what is really being said (listening)
- He does not want to leave home for any reason – he would prefer to stay put and feel safe (travelling)
While my son is intelligent, inquisitive and witty, he is also highly anxious, dependent on routine and resistant to change. Daily life can therefore become a battleground, particularly when it comes to a change in routine or the need to go somewhere new.
As a autism family, our greatest challenge right now is encouraging Gilbert to see family outings as something positive, instead of the threat they pose to his need for control.
Each weekend and every single school holiday, we find ourselves fighting with him to leave the house – he just does not want to go anywhere.
For my boy, once he has finished his school commitments for the week or for the term, he just wants to seek sanctuary at home, where he can watch YouTube, read books and enjoy his own company. He needs to decompress, relax and block out the reality of the world around him after the rigours of school.
While we acknowledge this need and we do our best to give him the opportunity to have this time alone, there are times we want to go out as a family. However, as he cannot cope with any “threat” to his plan, he will become highly distressed and anxious if we insist on him leaving the confines of our house, for any reason at all.
Which means we, as a family, struggle at every turn to make plans or keep commitments that take us all out of the house at the same time. So, more often than not, we find ourselves split up, as one of us stays home with our son while the other takes our daughters to the proposed outing or activity.
It’s not an ideal way to live.
There are many other ways that autism touches on daily life, but for us right now, this is our biggest challenge. It’s the one that affects every single member of our family and the one that is causing all of us the most frustration and pain at the moment.
So while there are many positives to be thankful for (and we are so very thankful for those!), it’s impossible to ignore the very real impact that autism has on daily life. As much as we want to see the good and celebrate the wins, the reality of the everyday relentlessness of living with autism does bite.
Do you live with autism too? What does daily life look like for your family?
This post is part of a new Parenting a Child with Special Needs blog hop where myself and other special needs bloggers will share our thoughts on a set theme each month. This month’s theme is “daily life.” I’d love for you to check out all the other posts linked up for this month!
How to Homeschool your Child with Special Needs | Natural Beach Living
Day to Day Life Parenting a Child with Reactive Attachment Disorder | Every Star is Different
Life with Trauma ~ Living in the shadows | STEAM Powered Family
Reality Bites: Autism and Daily Life | My Home Truths
A Day in the Life of a Special Needs Mom| The Chaos and The Clutter
A Day in the Life: A Blogging Mom and Her Special Needs Kids | B-Inspired Mama
Failing My Son and the Routines He Can’t Explain | This Outnumbered Mama
Everyday Accommodations & Strategies for Kids with Hyperlexia | And Next Comes L
One Simple Trick to Connect with Your Child – Even on the Rough Days| Parenting Chaos
Navigating The Stream: The Trails of Daily Routine | 3 Dinosaurs
The Day I Learned a Lesson from Chocolate Milk & an Old Man | Carrots Are Orange