I’m just loading the washing machine and putting in the detergent when the phone rings. I already know before I answer who it will be and I dread the call that’s becoming all too familiar lately. 

My child has had another outburst at school.  As we talk through, once again, potential triggers, behaviour expectations and policies and how we progress from yet another incident I sit down and wipe a silent tear from my cheek. This isn’t an isolated incident either at school or at home. 

Raising a violent volatile autistic child is taboo. You feel shame and embarrassment and guilt and all too often parents like myself are left alone to deal with it. It’s isolating, exhausting and emotionally stressful.

We all know it’s not the child to blame but that doesn’t make it any easier. That doesn’t pay for damaged items, heal the scarring or ease the fear. That doesn’t calm your child, keep others safe or tidy up after another meltdown. 

So what does help if like me you are living with a child whose high needs and difficulties mean that they can become physical and violent at home, school or in public? 

Firstly, don’t struggle alone. 

You might feel alone but you most definitely aren’t. Often in the frantic scramble to get support and help for your child, you forget about seeking support yourself. Raising a child who has emotional or physical outbursts is extremely stressful and impacts greatly on your physical and mental health. Don’t be ashamed or embarrassed to reach out for help and support. Having a non-judgemental listening ear to confide in, a friend who understands, a support network who are there for you as a parent, can make the difference between you coping and falling apart. 

Secondly, accept that you might need to do things differently. Fighting with your child all the time doesn’t help anyone. Does it really matter where your child eats? Or what do they wear? Giving some control over your child isn’t admitting defeat or ‘giving in’, it’s about understanding their needs and accommodating those needs just as you would with any other disability. Stepping back and being able to admit that some things you do as a parent need to be reassessed is humbling and hard but children are not a one size fits all and all challenging behaviour is a form of communication that things aren’t working and changes need to be made. Being brave enough to see and accept that can bring peace and forgiveness where there wasn’t any before. 

Thirdly, treat the root cause of anxiety. All too often we get caught up in the trap of ‘behaviour happens, the child is punished, the child gets angrier, more behaviour happens’ and the circle continues on. In the heat of the moment when things are being smashed, people are being physically hurt and words are being shouted in anger stepping back, staying calm and seeing anxiety can feel impossible. Yet the reality is that your child is scared, confused, misunderstood and anxious and these emotions have become too much to deal with. Often an autistic child lacks the communication skills to talk through and share what is affecting them and triggers can happen quickly and easily. 

Stop and think:

What leads up to this incident?

What words were said?

Was there a routine change they didn’t expect?

Have there been too many demands placed on them?

Was the environment overwhelming?

Something as simple as the phone ringing unexpectedly, a teacher is off sick, not understanding a request, clothes that fit and we’re comfortable before now being too small, food tasting or looking different to how they expected, or sudden loud noise can all cause such extreme anxiety and lead to incidents quickly. It’s about understanding, being willing to help and putting things in place to reassure and comfort. 

There’s no magic wand. I can’t promise the calls from school will stop or the staring and judgement will disappear but remember to look after yourself, don’t be afraid to parent how your child needs, even if this goes against the norm, and work with your child to ease anxiety as much as possible. 

It’s hard but it will get better. 

“You look pale, how are you really?”

15 days before I’d had major abdominal surgery and was discharged from hospital a little over 24 hours later back home where my oldest three kids were eagerly waiting for me with the newest addition to our family. At this point, I was still leaking from nearly every orifice in my body, as you are would do after having a baby, and I was still pretty jacked up on painkillers to allow me to function outside of my bed. I was also hosting an assessment with a sleep system rep, the physiotherapist and the occupational therapist for my 5-year old son.

My husband had gone back to work after his paternity leave the day before, and I had only been discharged from my midwife that morning. A week previously I was in so much pain from surgical complications I hadn’t been able to get out of bed. But when you have a child with complex needs you don’t get maternity leave. Nobody picks up the mantel for you, nobody follows up on all the things you’ve been chasing for weeks, no one challenges the duff decisions that were made in your absence. It’s still all on you.

So that’s how you find yourself nursing your newborn in one hand while firing off emails with the other, and when the physio gently asks if you’re really OK you might find yourself leaking quite profusely from your eyes. Because the world is already tough for new mums, and it’s even tougher on new mums who are also parent carers. So what have I learned from my experience?

There is a very lovely poem that ends with this verse “The cleaning and scrubbing can wait till tomorrow” but children grow up as I’ve learned to my sorrow. So quiet down cobwebs; Dust go to sleep! I’m rocking my baby and babies don’t keep.” Author: Ruth Hulburt Hamilton

Now granted, this is talking about housework, but the principle is the same. Our babies are only little once, and this precious time goes so fast, so whether we’re talking about your disabled child or a sibling, we need to prioritise our mothering over the admin that comes with being a parent carer.

It’s easy to get distracted by the admin, there are so many professionals, all vying for our attention, and lots are unwittingly giving the impression that their time is more valuable than ours. Sometimes I feel pressured into agreeing to appointments that aren’t convenient. And then there’s the mum guilt. The feeling that I must do everything I can to improve his outcome, and his quality of life. The anxiety that each bad decision or delay might have a tangible impact on his future.

But really, when I think about it, I don’t want to be too busy adminning to be his mother or mother to my other children. If I strip it down to basics, what are the most important things I can think of for him? For him to be loved, and to be happy.

When I strip it back to those two things I realise that all the things I think are so important to do right now often do not make him more loved, or happier. Often I can choose family time over that appointment, or chase that email. Not always, but often.

So right now, as we all adjust to a new baby in the house, I want to choose family. I want to choose watching boxsets on the sofa while the baby feeds and sleeps, I want to choose cuddling with my big boys as they struggle with feelings of love and jealously. I want to choose to figure out how to leave the house with four kids. I want to choose all of that and more right now because the rest can wait just a little longer while I’m on maternity.

If you asked my friends what I’d been occupied with for the last few weeks they’d probably tell you it’s my new baby. As cute as she is, she’s not the only thing keeping me up at night! You see we’re having a bit of a nightmare at the moment. It all started back in March, when Thomas’s carer took a lot of annual leave and then some sick leave, before handing in her notice in June.

I was 6 months pregnant, we were rapidly approaching the summer holidays, and we were already on our knees having been managing without her for several months. When you add in the backdrop of covid, and everything we’ve had to navigate in the last year or so, we just didn’t have any energy left to figure out what came next.

I felt trapped between a rock and a hard place. I was entering that stage of pregnancy where I wanted to burrow down and nest, not bring a stranger into our most intimate world. And we were exhausted, the idea of training someone new felt too much, but of course, it wouldn’t get any easier until we started training someone!

Very quickly I realised that finding a new carer would not be straightforward so I started planning ahead. Come September my husband was going to be expected back in the office and I would have two children starting school at the same time in buildings on separate sides of the town. Clearly, I was going to need help!

So I applied for school transport. By virtue of his disability, Thomas is eligible for free school transport. I was nervous though, I’d heard that suction trained escorts could be difficult to find, and Thomas needs one to keep him safe. I chased our application a few times, anxious to ensure things were in place.

I was going to continue to detail the back and forths we’ve had, but honestly, I could write a small novel on it. Suffice to say that this small issue has blown up enormously. We are now into November, we still have no transport, we’ve triggered a funding review which is threatening to cut our funding in half, we still have no carer, and no opportunity for respite. My husband has been unable to return to the office because I need him at home.

There appears to be a local issue with providing suction training for anyone not employed by the Local Authority which means Thomas cannot attend any service that isn’t run by them without one of us present. There is also a national shortage of carers.

It is a complete and utter red-tape nightmare. No one knows how to move the situation forward. I am literally pulling my hair out over it. But almost no one knows. I haven’t told any of my friends the full extent of the nightmare we are living. Why? Because it is boring as hell. And nothing ever changes or improves so all it is for me to say is to repeat the rant I had the first time I mentioned it. And each little thing on its own doesn’t sound like much, but the full history is huge and convoluted.

And the more I don’t talk about it, the harder it is to talk about. Sometimes I start writing messages in my WhatsApp groups and then delete them thinking they sound so random and pointless and that I just don’t have the energy to explain why it’s such a problem.

But it means I also don’t have the energy to explain why I’m not doing other things. Or the energy to hold space for other people’s difficulties. And eventually, I don’t even have the energy to contribute to the everyday chit chat.

So slowly I fade into the background. The small cracks that once lay between me and my friends have become gaping chasms that feel impossible to bridge. Made so much harder in this space and time where social connections are so torn and frayed as a result of the pandemic.

So I really need this issue resolved. Not only for the support and security it offers my family and Thomas, but because I need my energy back. I have some bridges that need building while I can still see the other side!