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!