Sunday, 28 July 2024

Sunday

I wake up naturally and squirm and stretch away nightmares of work while savouring the realisation that today doesn't involve any.

Lazily moving downstairs to sounds of the dog yipping for my attention and his favourite garden bush, it's surprisingly clear that the day promises sunshine. I feed the cat who is clearly on the verge of total starvation and bring two cups of tea back upstairs. Plumping myself back in bed, I reach for the book I've nearly finished, and stayed up until midnight reading last night.

Blinds pulled up enough to let bright streams of summer in, we sip tea and chat while getting absorbed in our books by turns. Middle child brings the cat in purring, twice, who immediately runs away, twice. He will only cuddle on his own terms. He probably gets it from me. The dog has no shame or self-respect and is allowed to plant himself lengthways on our bed, his Sunday treat, for scraps of affection at any opportunity.  

Smallest and middle child come and go, citing Guinness World Book of Records facts and prodding the dog's ears until we chase them away to help themselves to breakfast, with the encouragement to consume food groups other than sugar.

I've finished my book and the sun is beaming at us now, beckoning us outside for our Sunday morning walk, so we acquiesce, unhurriedly. Sitting on the decking beforehand in the July warmth, contentment abounds. A Brazilian band are interviewed on Radio 6 by Cerys Matthews and suddenly I am overwhelmed by grief and nostalgia. I miss Brazil; I miss our family of four; I miss my grandparents. I feel like there are pieces of me in places I can't get to. 

But here I am home. 

We walk and talk, accompanied by our greyhound, up to the farm, where the chickens greet us territorially but politely. The dog and his nemesis, a particularly overbearing rooster, face off in the egg barn. We drop coins into the honesty box and select two full boxes of fresh eggs. Hidden away snugly between two hay bales are two feathery chickens, cuddling peacefully.

We take the dog for a run in the field nearby but he's more interested in trying to eat a stale slab of bread he's found than he is in taking any exercise. He probably gets it from me. We amble back home after picking up a couple of pints of milk at the village shop.

By the time we get home, the roast chicken in the oven smells divine and one of our children has clothes on. 

I think I'll make scones.


Monday, 21 November 2022

5 Reasons not to Despair for (Christian) (SEND) Parents

I decided to write this while I was sitting in my car crying, feeling that sense of despair that sometimes engulfs you when you have children with complex needs and are at the mercy of a merciless system. It felt like nothing would *ever* get better... on the back of two weeks of regressions and misery, we'd just had a disastrous afternoon with an Early Help worker from Children's Services - an intervention that we've fought hard to get - where our children were completing an "Anger Map" that just ended up making us all super angry with each other and left them frustrated, me drained and the Early Help worker looking slightly in need of her own intervention.

So while on the taxi shift waiting for our eldest to come out of Scouts, I sat and cried, and then I did what we should do so much more often and got on my metaphorical knees and prayed. God, HELP. I am out. Out of energy, out of myself. Please work a miracle. Lord, please just give us one good day, one good hour tomorrow. A bit of joy to stem the tide of relentless difficulty, tension, conflict, anger. I feel utter hopelessness at the future of our family, but I know I have to take each day at a time. You can do ANYTHING - please just give us one day of grace so we can regain our strength for the battle.

And it was then I decided that I would write this blog because sometimes it's incredibly frustrating when all the things you read about difficult times are written by people who have come out the other side. I'm still in this difficult time. We've come a long way from 18 months ago, but I'm by no means looking back on this years on with rose tinted glasses. 

Over the past couple of years these beautiful truths have been reasons not to despair. Some would say encouragements, but I know that for the SEND parent, God's word can often feel more like a lifeline that's pulling you back from the brink in the nick of time than anything else. So call them encouragements or reasons not to despair, depending on how near to the brink you are today.

1) Both us and our children have been given a solution to our biggest problem - and it's accessible and free

"Like the rest, we were by nature deserving of wrath. But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved." - Ephesians 2:3a-5

Our child's biggest need is not an EHCP, OT assessment, CAMHS appointment, sensory room or speech therapy*. Our children's - and our - biggest problem is that we are sinners whose only way to heaven is to live a life of perfect good works and we can't live it. And the solution to that problem is already a done deal. We are saved by a life of perfect good works, but it isn't ours - it's Jesus' life. He lived perfectly, died and was raised back to life and still lives today, cheering us on at God's right hand. Sin is our biggest issue, and we have access to a free salvation for which there is no waiting list and no private appointment fee. Thank God. 

*All of these are extremely important for our kids too. But ultimately only Jesus can save them.

2) Jesus is gloriously inclusive

"There some people brought to [Jesus] a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly." - Mark 7:31-35

The most obvious act of love and compassion here is the miracle that heals this man, but in a recent sermon I was also moved by the other subtle but powerful description of Jesus' intimate knowledge and love of his fellow humans. "After he took him aside, away from the crowd..." This man would have found it very hard in a crowd to communicate, being deaf, and Jesus just knows his need and responds to it without even being asked. 

I think it's especially moving as children with additional needs and disabilities often too find large groups of people difficult or impossible to be in. Sometimes the world just expects them to get on with it and adapt, but Jesus doesn't. He sees the need and meets it without a word. He knows each and every one of our children and he gets it. So when you fight for reasonable adjustments for your kids, know that you're learning from the best. Jesus' inclusivity goes far further than this, too: through him it is possible for us all to have every spiritual blessing possible, beautifully curated for each individual, meeting the needs in their lives, eternally.



3) Your fight for your child is a mere shadow of God's fight for us

This is Jesus in John 17 praying for his disciples:

"Holy Father, protect them by the power of your name, the name you gave me, so that they may be one as we are one. While I was with them, I protected them and kept them safe by that name you gave me."

Any parent has a strong instinct to protect their children, and as an SEND parent that's multiplied a thousand-fold. But all our passion, our conviction, our anger and determination on behalf of our children is nothing compared to the Almighty power of God to protect us. Jesus fought temptation, despair, the desire for the cup of God's wrath to be taken from him, and submitted to death - for us. He did this so we are completely shielded from the power of sin and death, forever. And God is our children's protector too. Not only does he offer them salvation, by his grace he is capable of answering our prayers for our children more than we could ever imagine. That feeling you feel when your Mama Bear instinct rears up inside you - that's nothing compared to God's zealous love for His people and His power and desire to bless us.

4) Your value doesn't come from the quality of your parenting OR the judgement of other people

‘Do not be afraid; you will not be put to shame.

    Do not fear disgrace; you will not be humiliated.

You will forget the shame of your youth

    and remember no more the reproach of your widowhood.

"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the Lord, who has compassion on you." - Isaiah 54:4-10

We have such high standards for ourselves as parents, and obviously in many ways that's good. But it's easy for us to slip into the trap of equating a healthy desire to be a good and effective parent with our ability to achieve that indicating our value as human beings. You are a valuable human being no matter how well or how badly you parent. You are worthy of dignity because you are an image-bearer of the living Almighty God. You are loved, deeply, intimately, more than you can imagine. On the days when you flop into bed feeling like a failure, know this and trust in it. 

This passage from Isaiah is particularly relevant because God is using a picture here of a woman who is despised by society for being barren and being a widow - both marks of shame in that culture. It's often mothers - and fathers - who are despised and shamed for their children's behaviour when they have additional needs. It's easy to take the judgement and criticism of others to heart and either despair because of it, or let that fear of people drive you to desperately stamp out certain behaviours in your children instead of listening to them and parenting them more holistically. 

God has always chosen to make the shamed of society his mighty instruments. David, a weak and small young boy, dwarfed by his macho brothers. Rahab, a disgraced prostitute. Mary, a young poor girl who faced the humiliation of pregnancy out of marriage. His power is made perfect through those who lack power. However ashamed others try and make you feel, know that God values you and is glorified through you and that he has chosen you to be his child and a unique and precious part of his amazing kingdom.

5) He tells us not to! 

"So do not fear, for I am with you;

    do not be dismayed, for I am your God.

I will strengthen you and help you;

    I will uphold you with my righteous right hand." - Isaiah 41:10

"But you, O LORD, are a shield about me, my glory, and the lifter of my head. I call out to the Lord,

    and he answers me from his holy mountain." - Psalm 3:3

The Bible is populated with people who are in despair. Elijah, David, Habbakuk, to name a few. And they have good reason to feel like this. But after every desperate call to the Lord to hear them, there is always an answer, and always a newfound conviction to trust, to rejoice, to wait in hope on the Lord. God tells us not to despair because he's predestined how it turns out - and because he planned and executed how it turned out on the cross and on Easter morning. One day he will wipe every tear from our faces. Before then, we live in this broken world, waiting in hope and crying out for the grace to live each day for Him, to take hold of the gospel for ourselves and our children, and to pray bold, expectant prayers in the power of the Holy Spirit. 

After my prayers in the car on Wednesday night, God did what he so often does, regardless of whether we ask Him to, and gave us some miraculous encouragements over the next few days. He is very very good. But even if those encouragements hadn't come then, even if we'd had another weekend of relentless difficulty, we'd still have plenty of reasons not to despair. 

God is our refuge and strength,

    an ever-present help in trouble.

Therefore we will not fear, though the earth give way

    and the mountains fall into the heart of the sea.

Psalm 46:1-2

Thursday, 8 September 2022

The Bible says far more about justice for the poor than about gay wedding cakes

"When you harvest your grain, always leave some of it standing around the edges of your fields and don't pick up what falls on the ground. Leave it for the poor and for those foreigners who live among you."

Saturday, 3 September 2022

Even the best deaths are terrible

My grandad recently died what was a really good death, on paper. At the age of 86, surrounded by loved ones who had been constantly by his side for his final weeks and days, he passed peacefully from this earth. He had a steadfast faith in God and after years of cancer treatment was eager and ready to leave this life and meet Jesus. He had lived a full life, being a dad to four children and several grandchildren and great-grandchildren, enjoyed many hobbies and had stayed fit and active right up until the last few weeks of his life. Everyone who loved him had had the chance to say goodbye and tell him all the things that you want to say when someone is near the end. He did not die in pain. 

Theoretically, death doesn't often get better than this. The contrast to a phone call in the early hours with news of a car crash, or a sudden heart attack, or a suicide, is overwhelmingly different. No surprise, a good innings, and peace. 

Yet for those of us who had to say goodbye to grandad, it still feels all wrong. As my great uncle said, "Death is so bad!" It is. No matter how much we dress it up with thanksgiving services instead of funerals and clothes in a favourite colour instead of black, death is awful. It feels unnatural because it is; the grief of that relationship being over and missing that person is a corruption of humanity's history. Watching my grandad's body edge closer to death was very upsetting. His strength draining from him, weight falling off him, his ability to eat, speak, move and eventually losing consciousness, was complete anathema to the tall, strong man who had made his great-grandchildren scream with delight by rocking them on his knees. And still, the nature of his death is the best that we can hope for in this broken world.




There's a reason it feels so bad. Our bodies were not originally designed to die. Our souls and bodies were created to be united. We were created to live in perfect unity with the world, with God, and with each other. 

One look at the news and it's pretty obvious that didn't work out. So now we have to deal with the terrible, terrible reality that our lives come to an end. Our souls and bodies are wrenched from each other at the moment of death.

My great uncle didn't stop there. He said, "Death is so bad! Good thing it's been sorted!"

What does that mean? Because from where the rest of us are it can look like NOTHING is sorted right now. And whoever becomes our new Prime Minister on Monday will have a hard job sorting people's energy bills this winter, let alone the problem of death and decay.

The Bible says that death has lost its sting (1 Corinthians 15:54-55). What is the sting of death? The eternal separation of body and soul, the eternal suffering without God's presence and without human connection, traditionally known as "hell" (minus the cartoon pitchfork devil, because he'll be destroyed then too).

That sting is gone, if we believe in Jesus. He took on the rot and stench of physical death, and dealt with the consequences of all of our mess and sin and guilt on the cross. And, crucially, death could not hold him. He came back to life because he is God incarnate and by the Holy Spirit's power, he took the sting out of death. While our earthly bodies may die, our souls can go to be with Jesus, until he comes back again to transform our world into the new creation where we will be united with our renewed, imperishable bodies, and experience no more mourning, or sin, or sickness, or death. 

It doesn't ultimately help to try and take away the sting of death by sanitising it with white feathers and trite wall hangings and memes that rhyme, any more than I can bring grandad back to life by putting a plaster on him. But there is a real cure for it. And while death still hurts us, it doesn't have the victory any more - praise God.

The last time I saw my grandad, we stood around his bed singing his funeral hymns to him. Eyes filled with tears, he raised his fists in the air triumphantly at the lines, "When the Lord in glory comes... his voice when he appears, will be music to my ears." He lived well, he died well, and he's now in glory with God. He would have been the first to say he was a flawed man, who'd made many mistakes - he was by no means perfect. He would be the first to tell you that Jesus' death is for you, for everyone, no matter how messy, especially the messiest of us. 

"Christ... was not abandoned to the grave, nor did his body see decay. God has raised this Jesus to life... Therefore let all Israel be assured of this: God has made this Jesus, whom you crucified, both Lord and Christ.

Repent and be baptised, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit. The promise is for you and your children and for all who are far off - for all whom the Lord our God will call." - Acts 2:31-39

Wednesday, 5 January 2022

5 Easy (and Not so Easy) Ways to Support SEND Families You Know

If you are reading this blog, the chances are you know a family who lives with special additional needs or disabilities - this could be autism, ADHD, Tourette's, Sensory Processing Disorder, Down's Syndrome, Cerebral Palsy or anything and everything in between! Maybe you are that family, and you clicked on this link because you feel like you're drowning and you'd love to have an effective support network.

The fact is that hundreds of thousands of parents and carers in the UK are living in ongoing extreme conditions as they nurture their children with additional needs. Many of us will be traumatised, diagnosed with PTSD, anxiety, depression, burnout and other mental health issues. Most of us are on some kind of antidepressants. Many of us will suffer physical injuries because of our children's struggles, ending up with broken arms, bruises, cuts and scratches. We will see our other children suffer similar despite our best efforts to shield them. And we will all weep, sometimes on a daily basis, for our children who are battling through a world that is overwhelmingly non-inclusive, uncompassionate and cruel, because if we're struggling, it's guaranteed that they're struggling even more.

These situations make us feel extremely isolated, which is then exacerbated by the fact we don't feel we can really tell anyone what's going on at home. We want to protect our children's privacy and dignity, we know their behaviour is not their fault, and we know many people completely misunderstand their needs and our goals as parents. Child to parent violence is a huge taboo for many reasons. This means that often families in our situations are left in a constant state of exhaustion, struggling to keep our heads above water, and often taking it in turns to plunge into crisis.

So, we really need you, our friends and family. We really need support networks that believe us, know our needs, and are ready to mobilise. We need people who understand what would help without us having to spell it out when we can barely draw breath. 



We are very grateful to a plethora of people in our lives who have prayed, hugged, talked, sat with us, Whatsapped us day and night, dropped off meals, never ceased to say encouraging things, and sometimes just let our tears fall on their shoulders. We couldn't have made it through the last year without them, and I certainly wouldn't be well enough to be writing this blog, neither would our children be well enough to have returned happy from a great day at school, played together without any incidents all afternoon, and then gone to bed with no problems, falling quickly sound asleep. (And yes, we have melatonin to thank for that too, we aren't wizards...)

So here are 5 easy and not so easy ways to support your friends who face a parenting slog:


1) Believe us.

This may sound really obvious, but most SEND families spend our lives fighting to be believed, and coming up against far too many individuals and systems who just don't. Whether it's DLA claims that are fruitless, a SENCO who tells you they're fine at school, or an EHCP assessment application that's rejected again and again, we live our lives with the fear and constant experience of being disbelieved. When you're living with something so real it means your children live their lives in misery, you can't go to the toilet for hours, can't leave your children unsupervised for even a few seconds, and can't have anything made of glass in the vicinity, it's pretty demoralising not to be believed. What's more, we live with a constant inner voice questioning our sanity and telling us that maybe we are actually terrible parents and if we only got our act together our family would be Insta-worthy, so it's really difficult when external voices actually echo that lie.

Whatever your friends tell you, whether it's in passing, directly, on Facebook, or by any other method, accept what they're saying. Acknowledge it and empathise, ask questions if appropriate based on what they are telling you. Phrases like, "that must be really hard..." are more helpful than you even realise, because they are such a stark contrast to silence, or to denial. I have personally found it really lovely when family and friends have gone and looked up websites I've posted or told them about and read them, and then mentioned this to me and asked which bits were the same as our experience. This means so much! 


2) If you pray, pray for us.

If you are a person who prays, then please do pray for us. We made it to 2022, having learnt so much in 2021 and come so far, by riding on a wave of prayer from literally hundreds of people we knew. It scooped us up from rock-bottom and set us back on track countless times, pointing us back towards God and the strength of Jesus and the Holy Spirit. Sometimes we were too broken even to be able to pray ourselves beyond just groaning to God. But having people pray with us in person or on Zoom, tell us they'd prayed for us, write down prayers and send little texts and cards saying they were praying, truly kept us going, because God heard their prayers and he answered them, little by little, sometimes imperceptibly but always, always keeping us going through the next day. 


3) Say positive things, to us and to our children (and don't run away if we cry).

A hand on our shoulder, a whisper of encouragement that we're doing a good job - these are the little things that yield so much more than you would ever know. Every week at church, one of our friends told us we were doing an amazing job. Another good friend regularly tells me that she loves our kids and finds their creativity so inspiring, and that she really enjoys talking to them. Sometimes she's said this even when we've had an absolutely horrendous morning and everyone can see it. It means so much that people say kind things when we want the earth to open and swallow us. I'm well known for bursting into tears when people say nice things, but that's fine. I don't often cry at home because I have to keep it all in, and that's really unhealthy, so just lean into it and maybe come equipped with tissues and/or a cup of tea if you're planning on being nice. ;) If you want to say something to our children, don't be offended if they don't reply or even seem rude. Children like ours often find praise very difficult as they can have very low self-esteem, as well as often having social communication and interaction difficulties.


4) Observe who our children are, and connect with them in small ways.

We have many friends who gave little gifts to the girls during lockdown. Craft sets, sticker books, soft toys, chocolates and sweets, pens, the list is endless. Not only did this mean a lot to us, it was a lovely way of showing them they were loved, that didn't demand anything back.

Lots of children who are autistic or have ADHD will have some special interests they are really into. Our daughter knows every kind of cat and dog breed you could think of along with their characteristics. Anything involving cats connects with her, whether it's a picture on your phone of your cat, a calendar with cat photos, a cat soft toy or just an anecdote about a cat. She may not look or seem responsive, look you in the eye or reply at all, but it makes an impact. When she was in total crisis it was best for people to go via us so anything came from her most trusted people, but in being so kind, people have built up trust with her more and more and now she quite often interacts with our family and friends. For us it has made a big difference that even through the worst times, people still showered our children with kindness, without expecting anything back. This does have a long term impact, even if the short term result seems non-existent, and beyond that it means a lot to us as parents.

5) Be proactively practical.

As an SEND family, the usual support is often not applicable to us. Babysitting can often not be undertaken at all. You're too exhausted to go out anyway. For months neither of us could leave the house in the evening as we physically needed two of us to attempt bedtime. Children can't be taken out by others as their needs can be so specific.

As well as this, when you're completely burnt out emotionally and physically, it seems impossible to even think of what others could do to help, let alone ask. You feel like you're climbing your own personal mountain that no one else can see properly and you're so far up you're beyond any ropes being thrown to you.

This is where support networks carefully observing, checking and then proactively helping can be amazing. Everyone will be different in what their needs are, but here are some examples of what has helped and would help us:

  • People have ironed our clothes, done our washing up, come and dug up the lawn for us to put a trampoline in, and a variety of other practical things. It means we can invest our energy in looking after the children but then not still be faced with piles of housework at the end of the day.
  • We paid for a cleaner for ourselves for a while, but I'm very aware a lot of people won't be able to do this. If it's appropriate, offering to pay for a cleaner, gardener, laundry service or other practical things can be a godsend.
  • Take our other children out for a nice time, or come and be back up for one parent so the other can take them. For siblings these situations can be extremely challenging and it can be a lifeline for them to access "normal" settings where they can choose their own activities, be free and have some fun. Giving lifts for siblings to activities is also really helpful, as children with SEND often really struggle with transitions and car journeys.
  • Food is a huge huge issue for many families like us. Sensory issues mean it can be literally impossible to provide food for your family that anyone or everyone will eat. Cooking and eating becomes super-stressful and a really anxious time for everyone. One idea is to find out the exact brand and type of food your friend's children like (seriously get them to Whatsapp you pictures as it has to be the exact same!), and then drop off a few bags full for the freezer. Another thing we really appreciated was people dropping off nice meals for Aidan and I; even just ready meals were so lovely to have as it meant we could eat something we actually enjoyed, that I hadn't been drained by preparing, and *bonus* -  I didn't have to make 3 meals that night! Money can also be extremely tight as SEND families are far more likely to be single-parent families, and often one or more parents has to give up work in order to look after their children, and buying the exact right cereal/chicken nuggets/seamless socks can really add up.
  • Free us up to be our child's PA. So so so so soooo much time as a SEND parent is spent filling in forms, making phone calls, attending appointments, and the rest. And it's tiring and really sad. The autism assessment form is 19 pages long and has to be hand written. The DLA form is 48 pages long of you describing just how hard things are for your child. Having a friend in the house to make you cups of tea and look after your physical needs while you can crack on with these awful but necessary tasks, is a huge support. My mum helped print out, cut out and stick out all the DLA answers that I'd typed on the computer as I just couldn't face it. If we have to attend appointments, having someone to stay with siblings if possible is amazing. Dragging loads of kids to medical appointments is a total nightmare.
I'm so aware having written all this that we are immeasurably blessed with the support that we have and our own pretty comfortable situation. Even so, we've reached rock bottom a few times ourselves. Put yourself in the shoes of a single mum who's looking after multiple disabled kids, living in a tiny flat with no garden in the middle of lockdown, and I hope you can see just why supporting each other is absolutely necessary. You could literally be changing - and saving - people's lives.

As parents, we are our children's most important resource (as the amazing Yvonne Newbold says), and we need to be on as good form as possible to meet their needs. You can be a really big part of that. 

Obviously everything I've written here is very much personal and what people need will differ completely from person to person. It's always best to gently observe and ask before wading in, as not everyone will want the things above, and every family's needs are different. But I also thought it would be silly not to include any practical examples, so hopefully this strikes a useful balance.

One day I hope I can give back to everyone so much more than they've given us. I can't wait!

Tuesday, 4 January 2022

3 Ways Our (SEND) Parenting Should be Inconsistent (or it should look that way, anyway)

It's said that consistency is the key to good parenting, something which most parents can remember wryly forgetting on purpose as they give in to a screeching demand for screen time while trapped on the motorway in a stationary car. But consistency for SAND (special additional needs and disabilities) families does not look anything like the consistency we associate with "traditional parenting". Traditional parenting relies on children to have developed, or be developing at a fast pace, the skills of emotional regulation, adjustment to change, managing frustration and processing sensory information, to name a few. This means that when you put an allistic or neurotypical child into a time out for example, they can handle the feelings involved in this and process the punishment rationally, resulting in them accepting it, albeit reluctantly, learning from it and changing the behaviour next time.

However, most SAND parents will have found that despite several years of imposing consequences consistently, sometimes to an ever more punitive level, their children's behaviour has become more and more extreme, with violent meltdowns and what appear to be "overreactions" and "random" violence occurring with more and more frequency. What these families are often told, either overtly or tacitly by well-meaning friends, family and society, is that "what that kid needs is a decent smack", or something along similar lines: essentially, this anti-social behaviour is deemed to be due to soft parenting. This in turn leads the parents or carers, out of shame, guilt and often sheer desperation, to continue to enforce ever more weighty sanctions only to find to their exhaustion, dismay and the detriment of their physical and mental health that this only leads to worse behaviour.

How do I know this? Because this is what we tried to do with our daughter for 9 years. And nearly 1 year ago, when she entered into complete crisis which presented as rock bottom self esteem along with suicidal thoughts and detailed suicidal plans, extreme violence inside and outside of the home towards objects and people and animals, a severe regression in life skills such as eating, sleeping and dressing herself and almost a complete shutdown in verbal communication, we had to accept that we'd reached the end of the road of traditional parenting. During this time she was finally diagnosed as autistic with high impulsivity.

That's when we changed everything and realised that we had to become completely inconsistent - or at least look like it. What I hope you'll see is that all of these inconsistent strategies are part of one overarching consistent rule: meet your child's needs, at all times. It's worked wonders for us and I hope it helps for you, too. 

1) Be inconsistent with your expectations

Some childhood experts have a saying, "once a child can do something on their own, never do it for them again". To this I say, a big fat nope. Depending on how a child is feeling, how many triggers they've faced that day, what kind of change they are dealing with and therefore how high their anxiety levels are will massively affect their executive function - that is, their ability to independently achieve life tasks such as dressing, eating and organising themselves. If your child is having a day of low anxiety and feeling calm and motivated by events they are looking forward to, they may successfully manage to choose their clothes, wash, dress and pack their bag, for example. Conversely, on a school day where they are overwhelmed with anxiety, they may not even be able to get out of bed or go to the toilet independently. 

The inconsistency comes in meeting your child where they are at, whether that's making them a list to pack their own bag, or physically dressing them and feeding them. The consistency lies in the fact you are relentlessly loving them and meeting their needs. This builds huge trust between them and you, which is the only way they will eventually be able to progress to more independence, if this is possible. Trust is fundamental to the confidence and calm to raise executive function ability. NB: Sometimes it is right to completely remove the demand, such as letting them stay home from school if there is a particular event happening they cannot cope with. We can't confuse meeting need with forcing them into traumatic situations with our help. 


2) Be inconsistent with your routines

This one sounds especially strange given that a lot of children with additional needs need strong, reliable routines. I'm not suggesting we throw these out the window! But occasionally, a child may feel completely unable to complete a part of their normal routine - or a child with ADHD or high impulsivity may feel overwhelmed by the need to change things up. Ask yourself, is this a dealbreaker? Will the world stop turning if they don't have a wash today? Are we doing anything today that means they actually can't wear pyjamas? Can they eat this meal in front of the telly, or can I make them something quick and less messy that means I can accommodate their needs to do so?

It's paramount to adjust at times when your child is feeling like this, if it is possible to do so.




3) Be inconsistent with your discipline

With children such as ours, it takes a long time to learn who they really are, and how to meet their needs - and they're always changing! With the best will in the world, sometimes we give a natural or unnatural consequence (incidentally, natural consequences are usually the only strategy that helps, but that's for another blog) and our child literally cannot cope. The ensuing storm is not defiance but the desperate attempt at communicating of a child who has had something they perceive as essential taken away. This can change on an hourly basis depending on the child's anxiety levels at the time. Some days a consequence that may be appropriate, such as the removal of a privilege, may be coped with and learnt from. On another day, it may cause such distress as to be utterly futile as an attempt to shape behaviour. We're never going to get this right every single time but what's important is that we adapt and are willing to retract or change a punishment if we think our child is actually being traumatised by it. This takes a lot of nuance and built trust over time, and different communication strategies with your child to figure out the difference between distress and wilful resistance, but it will come.

We basically already implement these strategies to our adult friends already. Taking mental health days off sick from work is now rightly a thing. Cancelling plans because you feel ill is socially acceptable. Not forcing someone to eat something they feel sick when presented with is basic humanity. Yet we so often make inhumane demands of the youngest members of society and then impose draconian measures when they cannot comply, leading to huge trauma, both for neurotypical and neurodiverse children.

These strategies are complex and may seem difficult to learn and put into practice. But as Ross Greene, author of the brilliant Explosive Child says, you'll feel a lot more in control when you figure them out, and your child will feel a lot more secure.

In the Bible, God is described as knowing us intimately. Psalm 139 says:

You know when I sit and when I rise;

    you perceive my thoughts from afar.

You discern my going out and my lying down;

    you are familiar with all my ways.

Before a word is on my tongue

    you, Lord, know it completely.

We can never attain such perfect knowledge of our children. But we can become the ultimate experts on them. We can know them so well we have an innate sense of their needs and adapt accordingly. It's a joy to feel like we are so in tune with our children, and as my daughter says, "it makes everything feel better for me". This is the greatest privilege of parenting, not to find the easy or conventional way, but to truly know and love our children and meet their needs, even when it takes every last bit of our energy. Don't let the world get you down: your inconsistency in loving them is the very consistency your child needs.



Sunday, 14 March 2021

Here is my nothing of sexual harassment

Here is my nothing of sexual harassment.

The incidents that are invisible, intangible and don't exist in any record apart from my mind and heart.

Every woman reading this will have a list like this too.

It starts early. 12-year-old boys rooting through our bags in breaktime classrooms, gleefully finding our stash of Always and pulling it out with a jeer. What were they laughing at? Our wombs? The very organs that gave them the breath in their lungs that they now use to embarrass us for having female bodies.

I was an awkward, gangly, bespectacled, train-track wearing girl, painfully aware of my utterly unbeautiful self. Male hands poking you. "What's that on your chest? Oh, nothing!" accompanied by guttural laughter and kudos.

Fast forward a while. I've learnt how to be pretty now and work as a waitress. It's a nice pub. A middle class pub. Still full of men who hate women.

I bring the pudding menus over, written in chalk on mini-blackboards (it's part of the mass-produced quirky charm). "Are you on it love?" The bellows of drunken laughter echo round the table. No man would ever say this on his own. They work in packs; it's all about the power play. I never tell them I've heard their hilarious joke several times before. I don't say anything. Ever. Especially not when they ask how big I like my steaks. I scuttle, embarrassed, around the table, not meeting their eyes as I clear their plates, trying to lean in beside them as little as possible, feeling eyes combing over me. 

I walk into the glass-wash and there's my boss, pressing himself up against another waitress again while his wife works in the kitchen, thinking he's funny, thinking it's a game. He hates racism because he's from a traveller background. Misogyny's working out well for him so far though.

None of us say anything. We congregate in angry whispers around the dumb waiter instead, by turns ranting quietly, by turns each making fun of the men who've abused us to cheer each other up (ask him if he wears his steak on his head). 

I like going out clubbing most weeks. I love dancing with my friends. The entry price of the inevitable groping hands on your bum and unwanted crotch grinding up against you is silently accepted by all of us.

After shoving once such hand away on a night out a few years later I angrily point to my engagement ring. (Now I'd call this capitulation; is the absence of a ring acquiescence to sexual assault?) I quickly find out I'm a FRIGID BITCH - should I let my husband-to-be know?

I walk around my university city crossing the road to avoid any scaffolding and the hi-vis jackets that are filled with cat-calling men. 

You can't avoid the vans though... you're fair game to them. Horns honk, words are shouted, sometimes inaudible but enough to let you know you're not worth anything. Walking down the street becomes a game of roulette. My heart pounds whenever I'm anywhere on my own.

Apparently I don't smile enough.

I edit the university newspaper and leave the office at almost midnight every Wednesday after sending it to press. Walking alone through the pitch black campus I speak to my boyfriend the whole way home, giving him minute by minute updates so he can call the police with my exact location if I'm assaulted. We were all given rape alarms on arrival at university. I wonder if the boys were given instructions not to rape anyone?

Second year brings an online, anonymous, ongoing campaign of harassment on my public blog. One of the most memorable messages I received read, "We want to see you raped by a gang of syphilitic sailors who cut your legs off so you hobble around on the bloody stumps." 

Everyone tells me to go to the police so I do. They take it seriously but there are no resources to police anything online then so it peters out.

I take the pile of printed out evidence to the University harassment office. The woman who's Head of the department has stepped out but her colleague flicks through the sheaf. "This is just what you have to expect if you're editor of the paper", he says. My stomach drops. 

The Head of the Department walks in and asks to see what's going on. She takes one look at the papers and tells me it's harassment pure and simple. I feel relieved and broken.

Nothing comes of it. They can't formally identify the students even though I'm pretty sure I know who it is. I'm told one option is for me to tackle it myself in a team meeting.

For a while I'm dazed, paranoid and highly anxious, not knowing when the next comment is going to drop, not knowing who's writing the stuff but knowing they're close to me, totally unable to relax in any situation. 



Since I've been married and had kids the incidents have been far fewer and farther between. Save for a drunken man shoving himself up against me on a seat on a train and stroking my leg while singing to me, and a few cat calls, life is calmer now. 

But every time I get in the car I check the back seat.

Every time my car's idling and a man's walking past I flick the lock switch.

Every time I have to walk past a group of men my heart still pounds.

I don't walk anywhere at night on my own, save around my immediate neighbourhood where I know someone on every street.

If I hear footsteps behind me on brief walks when I have to walk in the dark, I pretty much have an anxiety attack.

A few weeks ago a man stared at me in town and said, "so pretty, Jesus Christ". I felt weak, violated, and panicked, and my first thought was "it's my fault for putting some nice makeup on today". 

That epitomises what it is to be female. To feel used and devalued and to blame ourselves, because of how society has been set up.

Throughout my teenage years and twenties, my peers and I just accepted that was how things were. You went out, you got groped. You walked down the street, you got yelled at. We never liked it but we never ever questioned it. It wasn't until the #metoo movement that I think a lot of us woke up to the fact that this was never ok, and for myself I not only felt anger at the men who had conducted this gross wrongdoing but anger and upset at myself for accepting it. 

The point is that none of this stuff is a statistic. None of it is a rape or a murder and I'm not coming close to suggesting it's anywhere on the same plane and carries anywhere near the level of trauma that has been inflicted on survivors of these things by male perpetrators.

The point is that it may be invisible but it's absolutely life-changing. 

Assault and abuse doesn't need to get to the stage of rape and murder before it traumatises someone because it IS violence and it traumatises and traps and makes women slaves to fear even at this level. If a man is happy to swear at you in broad daylight, how far would he go in a dark alleyway at night? We're enlightened enough now to understand, to the extent that the law recognises it, that abuse can occur with no physical scars. But when it comes to misogyny and sexual harassment, we as a society have for too long completely ignored and failed to recognise the impact that sustained, life-long abuse has on women's quality of life, even when it doesn't make it onto a police report. It leaves scars.

I believe that Jesus Christ, when he was on earth, was a radical when it came to women and is a radical now who invites women to come to him and be unconditionally loved. The gospels show him time and time again valuing women where society vilified them, welcoming women where powerful men spurned them, comforting women where others ignored them, and honouring women where others disparaged them.

It's no coincidence that women were the ones that God chose to first have the privilege and blessing of seeing the resurrected Jesus. A woman was the way God chose to bring his Son into the world. 

I wholeheartedly believe in fighting for societal change because I believe that God's pattern for humankind was not the mess of misogyny and inequality we have currently. 

But realistically we're going to be left with some degree of this mess until Jesus comes back. So ultimately it's God that my comfort comes from. I know that the most powerful Man in the universe sees me as a precious, loved and valued woman. He created me with this body and this mind and this soul and he never, ever makes me feel hurt or devalued or worthless. In fact, he gave his life for me and for anyone who trusts in Him. 

I woke up this morning feeling utterly exhausted. The news of Sarah Everard's senseless killing, allegedly by a male police officer, the subsequent outpouring of women's trauma, the sense of people refusing to listen and the sense of despair was last night capped off by the Met police violence in response to the peaceful vigil. It's left me and many others feeling again the weight of the problems we face and the brokenness of the world. 

God cares. He sees. He will have his way and he will right every wrong one day. In the meantime, we wait, we comfort one another and we do what we can to fight for what's right. While we work and grow weary, I found this song really helpful tonight. While I am a woman and I am tired and I am sad and I am tempted to despair I will lean hard in his everlasting arms. 

He lavishes grace as our burdens grow greater
He sends us more strength as our labours increase
To added afflictions He offers more mercy
To multiplied trials He multiplies peace
When we have exhausted our store of endurance
When our strength has failed and the day is half done
When we've reached the end of our earthly resources
Our Father's full giving is only begun
Our Father's full giving is only begun
So lean hard
Lean hard
Lean on the everlasting arms
Lean hard
Lean hard
Lean on the everlasting arms
Lean on the everlasting arms
His love has no limits, His grace has no measure
His power has no boundary that's known unto men
For out of His infinite riches in Jesus
He giveth and giveth and giveth again
He giveth and giveth and giveth again
So lean hard
Lean hard
Lean on the everlasting arms
Lean hard
Lean hard
Lean on the everlasting arms
Lean on the everlasting arms
You lead me beside still waters
Your goodness restores my soul
I know that you'll never leave me
I know that you won't let go
You lead me beside still waters
Your goodness restores my soul
I know that you'll never leave me
I know that you won't let go
So lean hard
Lean hard
Lean on the everlasting arms
Lean hard
Lean hard
Lean on the everlasting arms
Lean on the everlasting arms
Lean on the everlasting arms