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. 

Happy Mother's Day

What is a Mother?

I hear you ask...

Someone cheering on footie,

Maybe with a flask.

Someone working late,

Making a Book Day Mask.

Someone knowing what’s needed,

Before it’s asked.

Someone starting and occasionally finishing, 

A million tasks.

What is a Mother?

I hear you say…

Someone who attempts to keep

The monsters away.

Someone who wishes there were 

More hours in a day.

Someone who worries about you

So sits down to pray.

Someone who seeks God’s path;

Following the narrow way.

What is a Mother?

I hear you question…

Someone made in God’s image,

A beautiful creation.

Someone with burdens to carry,

Without a mention.

Someone with love to give

And peace to bring during tension.

Someone who knows what’s happening,

Without her full attention.

What is a Mother?

I hear you proclaim…

Someone who is called ‘mum’, 

More than her own name.

Someone who has seen many accidents,

But yet to make a claim.

Someone who needs grace,

Where she’s taken the blame.

Someone who lives to glorify

Jesus’ name.

What is a Mother?

I hear you request…

Someone who is simply

Doing her best.

Someone who puts others first;

That’s her quest!

Someone who is hoping for 

Just a little more rest.

Someone who still mothers

Even with an empty nest.

A mother is usually the one

Who holds your heart

Who puts it back together

When it falls apart

Not all mothers

Are even mums.

We appreciate you all

Each and every one.

Because You're Worth It

Mother's Day is a funny ol' day... Love the handmade cards and nice words, and the forced kisses from teenagers. I'm always going to appreciate new earrings, or a necklace. This year, my son bought me a fish! He told me he wanted to get me a fish, so we had 1:1 time together, popped to the garden centre and he chose a fish for me. (1:1 in itself is a lovely thing, which I should probably aim to do more of. It's nice to spend time with one of the six. You get a chance to see them for who they are, not as a brother or a sister, but just as your son or daughter. Note to self; diary in intentional 1:1 time). 

I had bought a leg of lamb, and apple strudel because I just knew that's what I wanted to eat. I set my alarm for 2am so I could put it in the slow cooker; rather pleased with myself, was I. A friend came for lunch and asked what else I needed, I simply told him wine and chocolate. I was quite sure what I wanted today! I wonder with motherhood, if you get so used to just putting other people's needs, wants and desires before your own, that you forget to have any actual needs, wants and desires of your own...

Proverbs 31 is an interesting chapter of the Bible isn't it?! (Check out my adapted version here.) Maybe we think of reading through this chapter on Mother's Day, and seeing if we measure up to her. Actually I'm not sure many women would do that, (but there is a lot of good in reading it). What us mothers might do however, or women in general, and maybe even men...is to compare ourselves with another. Am I doing a better job than her? Is she doing a better job than me? Are her kids happier than mine? Does she enjoy motherhood more than me? And that is generally an unhelpful mindset; whether we think we're the one bossing it in comparison, or whether we think we're failing in comparison. 

The verses I'm drawn to today, are the ones where she looks after herself. There's plenty about her looking after her household; her husband and her family. Then there's the verses about her looking after her community, and the poor. All wonderful things, and true of a mother; catering for all those needs. But verse 25 says;

"She is clothed with strength and dignity; she can laugh at the days to come."

'Clothed' says to me, that she wears it, she puts it on. She wears strength and dignity. She puts strength and dignity on. She doesn't muster it up. She steps into it. I want to stop and dwell on what that looks like for me. What brings me strength and dignity in who I am? What strengthens me? What helps my self-esteem, my self-respect? What brings honour specifically to me, to who God made me to be? I think there are things which are universal, like standing in the truth of God's word, what He thinks about me. But there are also things which bring us strength, things which are unique just to us. 

This Mother's Day, I'd like to encourage us mums to think about our own needs, wants and desires. I don't mean to the detriment of caring for our children. In fact, the opposite. We will ultimately serve our children better, if we've looked after ourselves. Do we need to diary in some 'me time'? Do we need a hair cut? Do we need a walk in the fresh air? Do we need to start a class of some kind? Do we need to find a creative outlet? Do we need a coffee out, which doesn't go cold? Do we need some time with friends? Do we need someone to encourage us? Do we need some help with the house? Do we need an early night? Or all of the above?!

And that wonderful next bit; she laughs at the days to come. How secure she is in the future, even the unknown, or the upcoming hard bits... Because she knows where her identity comes from. She knows she is loved by her father in Heaven. She is secure in Him. He's got her. He's for her. He adores her. He cherishes her. She not only knows it, she lives in it.

A Cup of Milk

Bedtimes can just be so full on!!

For the mum, it's like the finishing line; the thing they've been working towards all day. The epic finale to the show with it's various characters; people exiting and entering the main stage, with costume changes and intervals, and a script which seems so familiar, with huge amounts of comedic ad-libbing, forgotten lines and sheer dramatic performances. 

As the little people are ushered up to their beds, the mum starts to see the curtain tassles untie for the final close. She hopefully expects to hear rapturous applause, maybe flowers thrown on the stage; an appreciation of the performance she has given today. She was after all, the stage manager, the understudy, the main character, the background chorus, the prop handler, the care-taker all in one. She gave a great performance today, her children will probably call her blessed as they thank her for her parenting, laying their heads upon their pillow....

For the child however, this is the encore. They've got a whole other scene prepared. They're ready to bring out the fire eating act, and delve into the character of Verruca Salt. They have no idea you were even part of the show. This is their moment, and they're going to give it all they've got.

These two approaches to the final curtain call, can really cause some instability to the whole performance. I personally get all jittery, winding down to 'me time'. I don't want the kids to steal my time. And they love me sooooo much, that they want to squeeze out every last minute of time with me, which is nice!! It's funny because we don't do fair in this house, but it's just so unfair when they still have pillow demands of me....a cup of milk, the Bible, a kiss, a wee, a cup of milk, a philosophical question, a funny story, a lost dog, a cup of milk, something that happened at school, a cup of milk, a missing Lego man, a few tears, some water, a reenactment of a fairy tale, a stolen pillow, a form to be signed, etc.

Tonight, just getting the first two down was an emotional roller coaster, and I was spent. I had nothing else to give. My littlest asked for the Bible, while she drank her cup of milk. I took a deep breath, or was it a sigh, and I read the next story in her Bible; a story that she probably didn't understand, but it hit home to me. The story was about a man called Elijah who met a very poor widow. She only had enough flour and oil to make one loaf of bread, and then her and her son would die. Always a nice cheery story to read a two year old before she sleeps, but I read it in a cheery Mr Tumble voice, and skipped the death bit. Elijah asked the widow to make him a loaf of bread first, and then make her own bread, and God would see to it that her flour and oil didn't run out.

I was so stirred, that at this widow's hungriest and emptiest moment, she gave to someone else first. What a wonderful picture of motherhood; giving when we've nothing left to give, when we're spent, when we're done in. God provided for that widow in such a miraculous way; providing her with enough flour and oil, to ensure she didn't go hungry. He gives to me too. I'm probably not going to make my own bread anytime soon, although with oil and flour, and maybe a cup of milk, I could attempt some pancakes. But my Heavenly Father does give me grace, strength, energy, rest, and another tomorrow, to go again. He's never spent or done in. There was a moment when Jesus gave His life for me, when He gave His all in my place, when He lovingly went out of His way for me, so I never have to go without again. 

"For God so loved the world that he gave his one and only Son,

 that whoever believes in him shall not perish 

but have eternal life". John 3v16

Just Do It

So my first post of the year; New Year, New You, saw me claiming the word "Intentional" as my own, for the whole year! And it's been rather interesting so far. For starters, you can pretty much do anything and just add the word intentional to it, and it makes you feel better haha. Love an easy win.

I've had quite a few people message me encouragement from my Instagram stories, saying they've appreciated how I see the word intentional. I think I used to see it as 'do more', or at least, 'just do it' (Whatever it actually is) 'be better', 'try harder', and ultimately 'try to be someone I'm not', which can be really demoralising, tiring, and not honouring to God. He made me to be be, not someone else. 

However, He does want me to be the best me I can be (in His strength, not my own).

I had a bit of a blow out with one of my boys. It was one who I don't have many blow outs with; our personalities don't clash, and his temperament  is pretty chilled. He over reacted, and then I over reacted, then he was very frustrated and I equally so, resulting in tears and huffs from us both. He went off to read, and I went off to the kitchen.
The kitchen; my weird haven. It was close to his bedtime so I knew I could just get him into bed, and then have some time to blog, and intentionally encourage a mum or two and just breathe a bit.

I wondered what 'being intentional with my parenting' meant in that moment, and I found myself seizing the moment. I sat next to him on the floor, said what I was sorry for, asked what he was sorry for. We hugged, we prayed, we forgave, and I asked him if there was a film we could watch together. He reminded me that it was his bedtime, which is his way of asking, 'are we watching the whole thing, or are you going to make me stop half way'? (Something he doesn't like too much). And I said the most important thing for me right now was to 'lean in and love him'. So we watched a half decent movie about Earthquakes. I didn't blog, or encourage a mum. But I intentionally loved my son, and it was just so worth it.

There was another moment this week, where the kitchen was an absolute state. It had got on top of me, as it does. I had made a meal for a new born mum and her family, and then was stressing at having to make my own kids a meal, and clear the table so we could all eat together as a family... I knew it would be through gritted teeth. So instead I set up a little camp for the girls, which means 'drape the curtain over the sofa, and give them pillows', and I didn't ask the boys to come away from 'Ultimate Ninja' or whatever they were watching, and I just made a heap load of sausages which they ate in front of their screens. I don't know whether this was intentional parenting, or intentional breathing space. But I know it served us all better than if I had stressed to do the other stuff.

I think the word 'intentional' for me, has relieved some of the Mummy Guilt. Ah man, that 'I'm not good enough' feeling mums seem to get the moment a child is handed to them. What is that? And where does it come from? Eating sausages in front of screens could easily be seen as a fail, a 'not good enough', a 'can't be bothered', with just a load of mum guilt thrown in, especially when family meal times are really important to us. But for some reason, making an intentional decision to do this for me, for my sanity, for my capacity, lessened all of that. And of course, the kids think it was the best so it was a win win.

Whatever you do, work heartily, as for the Lord and not for men,

 knowing that from the Lord you will receive the inheritance as your reward. 

You are serving the Lord Christ. Colossians 3v23-25