A day in the life of a working mother with a neurodiverse child

Written by Natalie Venturini, Head of Marketing

I am a senior Marketing professional and a mother of two children. I have a nine-year-old daughter, and a seven-year-old son. My little boy has a severe learning disability and has been diagnosed with Autism Spectrum Disorder (ASD), Attention Deficit Disorder (ADHD), Sensory Processing Disorder and Sleep Disorder.

He is non-verbal and therefore unable to communicate through speech. He cannot perform any kind of self-care which includes toileting. He also suffers from crippling gastroenterological problems and anxiety.

These complex problems manifest in the pathological avoidance of the most basic things, like getting dressed, leaving the house, or getting into the car for school. Brushing teeth, having a wash, or going to bed are not possible without a huge amount of distress. ‘Normal’ things that you may take for granted like going into a shop, visiting a friend, having lunch in a restaurant, or having a family holiday are not possible.

When he becomes dysregulated by the external environment (which can come from any number of sights, sounds or frustrations that he sees, hears or feels) he will self-harm, harm others and destroy our house. These ‘meltdowns’ or episodes of intense distress, hyperactivity and destruction can last for hours. The bigger and stronger he gets, the more intense this behaviour becomes.

For Neurodiversity Celebration Week I thought I’d share with you what a typical working day in our family is like!I wake up with earplugs still in my ears, I managed to fall asleep at some point, it was Jon’s (my husband’s) turn last night. My boy didn’t get to bed until about 5am. I think the last time I heard him was about 3am banging on the walls and at one point he was definitely in the garden jumping on the trampoline! Every night we take it in turns to sleep in a bed next to our boy while the other gets a full night’s sleep on the top floor – although we can’t help but hear what is going on downstairs!

Our alarms go off at 6am and we get ready for work and get our daughter ready for school – although at the age of nine she is quite self-sufficient now! My mum comes over, waits for our little boy to wake (which is usually about 10am) and after a long struggle gets him dressed and into school. Often it isn’t physically possible for her to manage this.

Meanwhile, on his drive to work, Jon drops me at my mum’s house (when I am working from home) which is an utter sanctuary from the chaos of home.

We get on with our working days and we are in constant contact with my mum and our boy’s school. He often has challenging days at school which can mean early pickups and providing immediate assistance. Luckily, my mum’s house is a 5-minute drive from both my house and his school, so I am never too far away.

Jon picks me up on route home at about 6pm and we arrive back to the mad house! Our boy is usually naked at this point feeling the need to remove all of his clothing because of his heightened sensory interoceptive awareness. We need to give him a suppository to help him have any kind of bowel movement. Then while we wait for the expectant bowl movement we help our daughter with her homework, get dinner ready and/or take her to her Jujitsu classes.

As our boy doesn’t understand what is happening when he has a bowel movement, is scared of the bathroom and won’t tolerate clothes / nappies for very long, we end up changing and washing multiple bed sheets, floors and carpets every night. We have nailed every bit of furniture to the walls as the evenings are when he becomes most destructive and aggressive. We try to protect our daughter as much as possible from his bombardment of hitting and scratching (there’s a reason for those Jujitsu classes!). He will be up for most of the night again.

My narrative here doesn’t really scratch the surface, yet I am aware that this all sounds pretty terrible! And if it wasn’t for my mum and my parents-in-law – and the rock that my husband is – I don’t know how we might have gotten through the really dark times.

We are also incredibly lucky to both get wonderful fulfilment from our jobs, and I am thankful that Stanton House affords me complete flexibility to juggle work around my complex family life!

Although our pre-described notions and expectations as parents have significantly changed over the years, the joy our little boy brings us each day is immeasurable. He has a beaming smile and can be incredibly gentle, affectionate, and playful.

When he is unencumbered by external factors, the utter joy he finds in the simplest of things, the feel of a Christmas tree against his skin or the coldness of snow on his feet, is quite something to behold.
I have never seen such pure joy in anyone. And we see and feel this from him every day. He has provided us with so many life lessons and every small thing he achieves we feel so profoundly.

He has opened our eyes to so much in the world and has made Jon, I and his older sister more resilient, thoughtful and able to feel like we can take on anything!