What it’s really like to parent with a disability
Aria-nominated pianist and composer Nat Bartsch and her musician husband Jeremy Hopkins have more in common than just their passion for music.
Both are neurodivergent, Nat with autism, and Jeremy with ADHD and autism.
So what happens when a couple dealing with the day-to-day challenges of their neurodivergence and demanding careers decide to have a family? What feelings and behaviours are triggered and what sort of lifestyle and environmental adjustments help make
the transition as seamless as possible?
Nat tells us more in the article below, and details more of her journey in our Grow Bold With Disability podcast here.
Although Nat was elated to find out she was expecting a baby, she feared the complexities of her disability would create problems.
Jeremy also started working for a major performing arts company around the time she fell pregnant, with lots of travel and long periods of time away.
Despite Nat’s concerns, the newborn experience induced unexpected feelings of stability and order.
“There’s a sense of routine that came from being a mum and also being pregnant getting ready for the birth. And both of those things are something that don’t come very often in the music industry”.
“All of a sudden there was this predictability to the day, particularly in that newborn phase where you feed them, change the nappy, play with them for a bit, put them down for a nap and then repeat, and I found it really stabilising.”
MANAGING SENSORY NEEDS
For Nat, although she was generally adapting well to motherhood, she still faced daily challenges and hardships unfamiliar to neurotypical parents.
Like a lot of autistic people, Nat and Jeremy both struggled to stop an activity and move on to another, particularly if the activity is a special interest. To make the changeover process easier, they made adjustments to reduce sensory overload.
Nat uses noise cancelling headphones while she’s cooking dinner, “so I don’t suddenly have all these noises in my periphery while I’m trying to transition out of making music.”
She also likes to wear compression garments under her clothes if she’s feeling particularly anxious or elevated, as “it’s sort of like someone giving me a big hug through the day, and that really helps me feel quite calm.”
Jeremy has also found activities to help shift his focus from music to other areas like paint by numbers, an effective way to engage and sooth people on the spectrum.
As a family, they have reshaped their idea of what dinner time should ‘look like’, and dispelled the traditional view of sitting around the table with no distractions.
“Jeremy might have some colouring or painting, Will might be holding a little matchbox car, and I might like a fidget spinner near me.
“We all have something that kind of keeps our hands busy and minds calm and able to enjoy spending time together more easily.”
BEING REALISTIC ABOUT THE DAY TO DAY
Another change which has helped significantly is re-evaluating what they can manage on a daily basis without becoming overwhelmed. If there is a combination of activities likely to lead to exhaustion and avoidable stress, they modify or tap out of those
“A few years ago, I might have done a really high-pressure concert and then the next day tried to resume my usual music work and keep burning the candle at both ends, whereas now I know that I just need to put Will in the car and I do a bush walk
amongst the trees.”
“It satisfies my sensory needs but also helps me to regulate,” says Nat, who to this day is continually learning how to navigate the interplay between parenting, neurodivergence and a hugely successful career.
“So it’s just all these tiny little adjustments, and then also getting support workers to help us with the more monumental challenges that we have day to day. All of those things have really changed the way we live our lives in a really beautiful
way. It’s great”.
Further to that, Nat also believes parenting with a disability may in fact provide neurodivergent families with more insight than other families.
“I wonder whether we’re able to observe our children on a really kind of detailed level (and assess) what their social communication is doing and what they might need.”
“That could be one of the beautiful things about it.”
Nat and Jeremy’s parenting journey is further unpacked in the book ‘We’ve Got This: Stories by Disabled Parents’ edited by author – and previous Grow Bold with Disability guest – Eliza Hull. You can find out more about it here.
You can also find Nat’s Growing Bold With Disability podcast by clicking here.