Rebecca Smith is a blogger and recipe developer (GLUTARAMA), social media editor and virtual assistant. More importantly, she is mum to two amazing kids with Autism, Coeliac Disease and Type 1 Diabetes.
Having a child with a health condition, especially a long-term health condition is a drain on both the child and the parent or carer, this I’m sure everyone will agree with. Add the child being neurodivergent into the mix and the odds can be stacked against you.
I am the parent to two autistic teens. One teenager, my daughter is also Type 1 Diabetic and has Coeliac Disease and undiagnosed ADHD. Bethany was born autistic of course but the diabetes diagnosis came when she was 3 years old and the Coeliac followed two years later. My son thankfully has no health conditions but was under CAMHS for years for his anxiety and medicated accordingly.
No, it hasn’t been easy, and no Beth isn’t lucky she got diagnosed early on. How many times have I heard the toxic positivity comment ‘at least she knows, no different having grown up with it’. Not helpful at all thank you very much!
That said, I had expected things to get easier as she grew up, that I would be able to pass the baton over to her to enable her to manage her own conditions as she prepares for adulthood.
I was naïve and I accept fully that I was comparing her to neurotypical families.
You see with Bethany’s Autism and ADHD there are limits to what she can deal with. Some days she can function better than others. Best case scenario she goes through a day eating well, at sensible times and remembers to manage her diabetes with her insulin pump and blood sugar monitoring.
Bad days she displays low mood symptoms, eats poorly or not at all, sleeps most the day or hyper fixates on one things then becomes overwhelmed and totally shuts down. The times I have gone into her room to check on her and she has been locked in a seated position on her bed staring at the wall.
The million-dollar question. How do you support your neurodivergent child to manage their health condition?
With time, experience and flexible care.
There is no manual on how to this because every child is different. I wish they came with a washing label, but they don’t. The good news is that if you are reading this, and you are embarking on a new health-related journey with an neurodivergent child, you are going to be the expert and your child will be your guide.
Be open to what they are telling you, both verbally and non-verbally. Learn what works and what doesn’t. be prepared to get it wrong in order to get it right. And most important of all, praise yourself as often as you can for just-being-there. Berating yourself is lying to yourself and the fact you even thought about it in the first place makes you a good parent for even caring.
My son and daughter are ying and yang in many ways when it comes to their autism. With my son I know that distraction tactics work to calm him in high anxiety situations. Meanwhile, my daughter prefers to wear her headphones and shut out the world around her. I used to think that by not telling them about appointments I was doing them a favour, reducing the build up of stress, but I was doing the exact opposite. Instead, being clear about where we were going, what time and how long I expected us to be was a far better plan of action.
Having a positive thing to look forward to after any stressful encounters Being prepared to make a hasty retreat was a necessary tool in my arsenal. If there was a clock in the room and we had gone one minute over my estimated time, that was it, appointment over and my son would walk out!
A recent appointment that I attended with Bethany ran for 40minutes it was to train us in a new diabetes loop system. Beth was able to focus for 30 minutes but the last 10 minutes she zoned out and started to count things around the room. Her diabetes nurse has known us for years so we know to just carry on talking among ourselves and let Bethany drift off.
I could write a book on this but one last golden nugget of knowledge I was gifted by my children was never make assumptions. Don’t assume they understand what is going on just because they were there to hear it. Let any new information sink in, it will, and revisit it at a later time to discuss. Summarising your thoughts on an appointment or diagnosis or medical intervention can open up a dialogue with your child and never, never interrupt them when they start to speak. Even when there’s a long pause, 9 times out of 10 there’s an eye-opening revelation about what your child has been thinking just waiting to pop out of their mouths.
For more support on navigating the mental health impacts of managing a chronic physical health condition, download Smile App for free now on Google Play Store or Apple App Store.