Parenting autistic kids while coping with my own health issues: My not-quite-what-I-expected life | #parenting


"One 20-minute appointment delivered a life-changing diagnosis. Not life-limiting, yet 'not quite' bad enough to feel OK grieving about it." (File photo)
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“One 20-minute appointment delivered a life-changing diagnosis. Not life-limiting, yet ‘not quite’ bad enough to feel OK grieving about it.” (File photo)

OPINION: Look closer. Look at the people around you. Walking the same footpaths as you, driving the same roads. In your schools, shops and neighbourhoods.

What you perhaps don’t see in their faces is that they are “not quite” living how they thought they would. The not-quite things can be beautiful, hard, messy. Mostly they are not noticed by anyone else.

To those who are flying under the radar, who fear that the hard things in their lives don’t need to be talked about, I see you. In some ways we are the same. We live as the “not quites”.

I want to say upfront that being a “not quite” is not a terrible thing. Certainly not the most terrible thing. There are bigger and more desperate situations. The problem is that life is lived in the small moments too.

READ MORE:
* The Breeze’s Breakfast host Kath Bier is not letting epilepsy slow her down
* Keeping a sense of humour after being diagnosed with epilepsy
* Why I was glad to be diagnosed with high-functioning autism
* Epilepsy support groups will help to remove social stigma

Author Madeleine L’Engle is quoted as saying “…comparison is odious.” Perhaps we don’t have to compare the big and small moments that unexpected challenges bring. We can hold both without fear of getting their importance wrong, of offending those whose stories hold a heavier weight right now.

In that spirit, here are the “not quite” what I expected parts of my own story.

My life looks like attempting to function with depression and anxiety, of spending years hiding just how hard it was to not worry about every. Single. Thing.

Trying to manage panic attacks and anxious looping thoughts while attempting to parent healthily and consistently. It looks like speaking openly about mental health with my kids, and hopefully teaching them compassion and empathy.

It also looks like learning how to manage a diagnosis of epilepsy in my 30s, a diagnosis that ended a potential midwifery career. One 20-minute appointment delivered a life-changing diagnosis. Not life-limiting, yet “not quite” bad enough to feel OK grieving about it.

Epilepsy has meant adjusting to medications that make me very tired and head-achy. It has meant living with a hole in my tongue for months because of night seizures, and having days when my memory and speech are affected. For a year it also equalled no driving.

Two of my four children also live with high-functioning autism. This is a mixture of great and bloody hard. It means constantly being aware of possible triggers for them, and dealing with meltdowns when those triggers become too much.

I’m always trying to learn things about the world they experience, a world that can be very different to my own. With this comes the experience of trying to convince strangers that I’m actually not a terrible parent with hideously behaved offspring.

There are days when I push through the exhaustion of parenting atypical kiddos (and my medical problems) with “patience”. Other times I hide in the toilet and pray.

Walking can help, as can trying to get a good sleep, talking to my husband, friends and those who have similar diagnoses, and disappearing into a good book.

RNZ

People with epilepsy say their lives are being turned upside down by seizures after Pharmac pulled funding for their medicines. (First published September 2019)

With my mental health and epilepsy, medication is essential. I don’t feel shame about this, and I am so glad that slowly the stigma of using them is reducing.

What helps the most though? Other people noticing and taking the time to ask how our family is, with real intent to hear and understand.

This isn’t unique to me and my family. If I sat at your table and spent time listening, I know I would get to hear so many stories of courage and joy and strength.

When we take time to look closer and listen a little harder it helps everyone to see our wonderful, ordinary, not quite what we expected lives. And they are beautiful.

To share your “not quite” expected experiences, email the author here. She also blogs about the more humorous moments in her life here. 

 



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