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.

Now You See Me, Now You Don't

In the last blog, I looked at Hagar and how she was seen by God. I read a blog post a couple of years ago, called Nobody Saw You. It's about being a mum, and how a lot of what mums do isn't seen....the nose and bum wiping, the repeated story reads, the sleepless nights, the tantrum training, the losing it and apologising, the vomit clearing, the nursery rhyming, the bag holding, the gospel truthing, the tired crying etc 
(**The F word appears in it once, just a little warning). 

I remember crying as I read the blog post, because I resonated with it. I had a one year old, and a three year old, as well as the boy ones, and I was touched by it. Mummying can leave you a bit isolated, and feeling a bit invisible. You kind of want someone to see all the little bits that you have done, and give you a 'well done'. But a lot of those little bits aren't seen, and sometimes the house can look exactly how it looked at the start of the day, and the child can sound exactly how they sounded at the start of the day, and you can feel exactly how you felt at the beginning of the day. 

So much actually goes on, in the life of a mum, whether it's noticeable or not. 
The blog post, says at one point,

"Nobody sees you sometimes
but you are building something
that will never be torn down
a love that cannot be removed".

It speaks of a mother's love for her child, the building and training of that little person; a powerful thing indeed. 

"Train up a child in the way he should go; 

even when he is old he will not depart from it". Proverbs 22v6

The blog is written for a friend of the blogger, but I think it resonates with any mum. Like I said, it touched me personally. But also it gave me the challenge to make sure mums felt seen. So I bought some little bars of chocolate, some little bottles of wine, and some name tags. I simply wrote, "You are seen".  And I asked a few other mums to do it too. 

I stopped the car, and got out to give a mum of twins, a toddler and a dog my little goodies, and she was touched. I wanted her to know she was seen. I left a bottle of Gin outside a friend's house, who was and still is in a battle, letting her know she was seen. One of the mums I asked to help me, gave her little treat to a school mum whose son had been quite ill. She put a link to my blog, the above blog and their church details on the label. The mum burst out crying, and accepted a hug and the encouragement. And someone left a mini bottle of Prosecco out for me, which even though I had planted the idea, it actually really blessed me. 

So my challenge to all you mums is to bless another mum this week; a mum you know and maybe one you don't know. Could be a little bar of chocolate, could be a voucher, could be just a card, but let her know she is seen. Maybe you're a mum who longs to be seen, and known. Well this is the week to receive by giving.  Let her know she is seen by another mum, who understands. But more than that, she's seen by God, and loved dearly by Him. I'd love to know how it goes for you! 

"Therefore encourage one another and build each other up, 

just as in fact you are doing". 1 Thessalonians 5v11

Now You See Me

Currently reading through the Old Testament, and I come across a character I was meant to blog about quite a while ago, but somehow she got overlooked...again. Dear old Hagar; a character that shouldn't really even be known to us, an Egyptian servant to Sarai, Abram's wife.

Now Sarai did what we all do, (in principal rather than in practise!). Sarai took things into her own hands. She trusted herself rather than God. She was self-sufficient, self-reliant, self-obsessed maybe. She was impatient and waiting for God's promise to come to light was taking too long, so she improvised. She took the steering wheel and made things happen.

What did this look like in Sarai's case? Well, even though God had promised her husband "as many offspring as there were stars", she decided to give her servant to her husband for him to marry and sleep with in order for him to have the offspring promised to him! Now that's quite an intervention, and there's a whole load of bad choices in this one action, and that's why I said earlier that we all do what Sarai did in principle, not in practise. 

Not surprisingly, this situation doesn't pan out so well. Hagar does indeed become pregnant by Abram. Hagar then arrogantly snubs her mistress Sarai. Sarai then blames Abram and asks him to deal with Hagar. Abram says its nothing to do with him!! And tells Sarai to do what she thinks is best. Sarai then mistreats her servant Hagar. Hagar runs away! Wow, Hollywood could use that storyline.

I could end the blog post here, with a good basis on why we shouldn't take things into our own hands, instead we should trust God for His provision and let Him fulfil what He has said is going to be. But I want to pick up on what happens next with Hagar...

While she's fleeing into the wilderness, the angel of the Lord comes to her. Let me stop you right there. When I'm fleeing into the wilderness; the wilderness of the snack drawer or my phone, I'd be pretty scared if the angel of the Lord appeared to me and asked me what I was doing, and where I thought I was going?! I reckon I'd feel pretty challenged there and then, with an answer of, "mmm I was thinking of eating this chocolate to bring me the comfort I seek". Or, "mmm I was thinking I'd scroll through my phone to escape the issues in my life". But Hagar is honest. She tells the angel of the Lord that she is indeed fleeing from her mistress. I just love Hagar's honesty. She doesn't play it down, or change it slightly, or make it seem better, or justify her actions or lie about it. She says it as it is. Yes Hagar, I have so much to learn from you!

Then the angel of the Lord, just tells her to go back to her life. He knows running away wont help her. She'd be running back to a life of Egyptian idols, pregnant and alone. It is better for her to go back to Sarai and even submit to her. It is better for me to come away from the snack drawer, the glass of wine, the phone, Social Media and back to real life, in submission to God's best for me.

Hagar calls God, 'You are the God who sees me'. The well that she is by is named, 'Beer Lahai Roi' as a reminder that Hagar was indeed seen by God. I love that God saw her. She had been used, treated badly, sinned against, and she had herself sinned, and then legged it, and God saw all of that. He saw her, He knew her, and He was with her all along. That is so reassuring. God sees me when I'm hurt, when I'm sinned against, when I'm sinning, when I'm raiding the snack drawer, and when I'm escaping on my phone. 

He sees me. I am seen by Him.