One Pink Toothbrush

Welcome to One Pink Toothbrush, where I will be posting moments from my days as a mum and as a wife. Funny moments, messy moments, thoughtful moments, teary moments.... and hopefully using each moment to see what God might be saying.

Friday, 13 April 2018

Mothering Autism

Due to April being 'Autism Awareness Month', and to link in with the ongoing mothering series, I interviewed a mum who has two children with Autism. I'm very grateful for her honest answers...

A brief background…
We have two Autistic children. Our son is 9 and was diagnosed two years ago. Our daughter is 11 and was given a diagnosis in January 2018. Both our kids were initially referred at a young age (our son at 3 and our daughter at 5), but both of those assessments proved inconclusive, which means the process has taken a long time in both cases. Getting a diagnosis is just the beginning of a very long journey, but I feel like we’ve been in the ‘diagnostic’ stage for the past six years!

How does Autism show itself in your children?
They both have something called ‘social communication difficulties’ which means they don’t socialise in the same way non-autistic children do; they find it hard to understand social cues and all the ‘obvious/unsaid’ things that everyone else picks up on naturally. Our son also seems to have some cognitive processing delay (he can take a while to formulate sentences and answer questions) and his learning is quite delayed in some aspects. Our daughter is very high- functioning academically but struggles to understand implied meaning. Both of them are very rigid, literal thinkers, and show some form of ‘stimming’ behaviour (repetitive actions autistic people do to calm down or use as a thinking strategy). Our son paces/walks in circles when he’s thinking aloud. Our daughter at times does finger-flicking or rubs her knuckles together when she’s a bit stressed.

Both of them withdraw when overwhelmed and do a lot of self-talk, often repeating snippets of things they’ve read or heard (another calming strategy). A favourite movie can be repeated for days on end – I’m well and truly sick of Captain Underpants! Our daughter also has very poor organisational skills so she’s always losing things, doesn’t know what she’s meant to do between steps in a process and needs LOTS of reminders. You can see both our kids at times gazing at a fixed spot or standing still because they’ve zoned out or aren’t sure what to do next.

What’s the hardest/saddest thing about having a child with Autism?
I'm sure it changes, but at the moment it's the sense of missed opportunity, and how things might have been different. I'm still at the point where there's a growing sense of the battle ahead and as yet things being somewhat undefined. We’re now in the midst of applying for an EHCP (a Statement) for our youngest, and thinking about whether he can remain in mainstream education for secondary – a decision we can’t even begin to fathom. At the same time, we’re working out the transition process for our eldest from primary to secondary, trying to get to know a whole new Special Needs team in a completely different setting. I’ve joined parent groups/mailing lists/research projects and the paperwork is endless.

What’s the best thing?
The two of them. Who they are. It’s a common paradox that you wish they didn’t have the difficulties they have, but if they weren’t Autistic they wouldn’t be them. And they’re awesome kids.

Are there any funny moments?
All. The. Time. They’re odd kids. In a really good way.

How do you pray about Autism?
I don't. I pray for their needs. We pray that God will help them with the things they find hard, and encourage the kids to do that. My boy asks Jesus to help him with his learning like he helped Daniel, and he asks God to help him to stay calm when he doesn't understand what's happening. My girl struggles to pray at the moment, but I pray she will learn coping mechanisms to improve her focus and that God will deepen good friendships and help her relate to others. She's at a tricky point as she knows he brother is Autistic, and is beginning to recognise the things that make her 'different' from others. She mostly loves being 'weird and wonderful' but there are days when she really struggles with 'not getting it' and in her words, 'feeling like an alien'. It's heartbreaking.

Are there any verses/songs which help you carry Autism whilst having a relationship with God?
Funnily enough, the soundtrack to the movie The Greatest Showman. "This is Me" is a corker of an acceptance song, and "Tightrope" is a fabulous affirmation of a couple’s commitment to live a life on the edge, and walk it together. It helps me when I’m feeling wobbly! Our daughter’s big journey has been with disclosing her diagnosis to friends (she’s fully aware of what Autism is) and walking that line of accepting who she is as well as learning strategies to live and function amongst the rest of the world.
Lou & Nathan Fellingham recently wrote a song, adapted from the Hymn ''He Giveth More Grace" and Psalm 139 especially with the communication stuff; "before a word is on my tongue/you discern my thoughts from afar". God 'gets' my kids absolutely. Even when nobody else does. Even when they can't help anyone else understand them and can't articulate who they are. God gets them. They're not locked in by this thing. They're known deeply and loved deeply by Him. I don't know how my kids will fare through life with Autism. But I know that God knows, it's part of who He's made them to be, and He is their keeper, their provider and ultimately their rescuer.

Are you/have you been cross with God about it?
Heck yeah. And I'm sorry every time.

How does having a relationship with God help you as a mum?
It gives me an ultimate place of rest, even if it takes me a lot of scrabbling around in the dark to get there. It means there's reason in this. And a purpose beyond what I see and battle with in the day to day.

What is the best/worst thing people can say/do to help or make it worse?
Best is to just take us as we are if you can hack it. I think social isolation is one the worst. Our kids have very few close friends and social gatherings can be tricky, but the two of them long for connectedness and company, even if it takes a bit of supervision, and training for them. There are a few people who love us so well and pray for us and seek us out and seek our kids' company out. It's a balm to the soul because we (and they) don't get that on a day to day basis.
My pet hate, is when people say “I don’t know how you do it.” I understand where the sentiment comes from, and on a good day it IS encouraging to hear. On those days I can laugh and say “Neither do I!” The bottom line is, as with any form of adversity, we do it because there’s no other choice. We keep going because there’s nothing else to do. It’s not a compliment to say “I couldn’t do what you do” because actually if you had to do it, you would – end of.

Anything you want to add that I may have missed?
Most Autism parents are not experts. They, like all parents, learn on the job, constantly have to readjust, rethink, start over every day and do the best they can in the circumstances. They're not superheroes. Or intrepid pioneers carving out some new path. They're just people, by God's grace, doing the job at hand to the best of their ability. And they need to know they and their kids are accepted and loved as they are. That they don't need to make excuses. Or huge statements. That they don't have to exemplify some neat picture of 'walking with God' through Autism.

It's just life as it comes and some days we cope, and some days we don't. I look around at so many people with varying challenges and think, everyone has tough things they have to cope with. The challenge with something like Autism is that it's a constant thing. It's not a one-off moment of adversity. So even when it's "mild" (as might be my kids' case relatively speaking) there's no let-up. There are better and worse days, but it's an inherent part of life. And I'm sure I'll have lots of wisdom to impart once my kids reach adulthood. But this is it for now.

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