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!

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.