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
Why Special Needs Moms are Exhausted All the Time, But Will Never Ask for Help| Life Over C’s
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
The Importance of Visual Schedules for Non-Verbal Autistic Children | Kori at Home
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
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All of the frustrations come to a head for me when the rest of the family is being affected. It is so hard to attend to the needs of one child when they are in direct opposite of the needs of the others. SO I feel your pain and I am immensely impressed and in awe of parents how can live with that kind of frustration in a cheerful, hopeful way. I hope that I can continue to share your positive attitude. x
PS – Well done to both kids on their achievements this year. We have one about to start high school next year too and one who is also doing her Grey Wolf, so I know what a big deal their successes are. x
That must be really difficult to find any kind of balance in. Hopefully it becomes less severe at some point for all of you.
So many things I’ve never really thought about Kirsty, I love how you’re sharing your truths about autism and special needs parenting, I am learning so much from you.
Wondeful article! It’s interesting to read how it affects each family differently we are all so unique in our own little ways!
Fabulous and enlightening read Kirsty. It is so important that we encourage our little aspies to try new things and put them in situations that challenge them. But to what cost? So tricky for the rest of the family as you mentioned. I have challenged and encouraged many of my asd students over the years and had some great and amazing successes! I think Temple Grandin said too that if it wasn’t for her mother constantly pushing her and challenging her even though it caused her distress, that she would never have been as successful as she has become. Keep on keeping on mama xx you are doing an amazing job xx
We had a last minute invite to attend an event as a family last evening. It meant the five of us, all in varying stats of grunge needed to be ready and out the door in under 20 minutes. We may it to the event with a minute to spare, kind of looking presentable. It was a great night out but I kind of take for granted how easy I’ve got it with my girls. I easy I’ve always had it, even when they were three under three and the youngest was ten weeks’ premmie needing express feeds every few hours.
This would certainly be hard! I have a 2 and a ha;f year old with Down syndrome. I am also a single mum. My biggest challenge at the moment is her head banging when she is overwhelmed. She also does not like (older) men i.e. both of her grandfathers. Even if she hears them talk she will smash her head on the ground or table … :/
Thank you for giving us an insight to your life with autism. My only experience with it has been some of my students over the years. It certainly poses it’s challenges to daily life.
Thanks so much for sharing. Autism isn’t in my family, so this was a good learning experience for me.
This does sounds really hard to deal with. Hopefully it will become easier for him in time. 🙂 And I want to say that I admire your ability to always find the positives! 🙂
I love your attitude and yay for those awesome achievements. You should be so proud! I think you are doing an amazing job despite the challenges you face every single day.
I am also an Autism Mom and my so. Is 3 completely non verbal and sometimes and in stead of tell you he’s thirsty of hungry he will just kick hit or bite me. He’s not neat and orderly like your so.n But he definitely has his things that if it changes up He will have a complete melt down he is obsessed with numbers and lines everything up in a row and I’m pretty sure there is not a wall I. My home that he haven’t drawn on he will leave the house but refuses to get out of the car on most occasions he refuses to eat and gets mad at you for eating so he has a complete meltdown of you we’re to try to take a bite of your food wants nothing to do with Potty training he will only sleep in bed with me and has to sleep with one right up next to me if I have to get up to go pee I pray he stays asleep but normally realizes I’m not there and it’s a night mare to get him to go back to bed this is just the tip of the iceberg I can not keep a baby sitter and most preschools in this area will not take him but can’t afford to not work I feel your pain