Living with a Violent Autistic Child

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. 

Busting 10 Autism Myths

There are an awful lot of Autism myths out there; most are ridiculous, some would actually be quite funny if they weren’t so harmful, but they do seem to somehow persist in the national consciousness. So, here’s my guide to the top ten Autism myths and how we can bust them:

  1. “We’re all ‘on the spectrum’ somewhere.”  Autism is a neurodiversity, a different way of the brain being wired. You are either Autistic, or not; so no, you can’t be “A little bit Autistic.”
  2. “Children can grow out of it.”  Autism is a difference hard wired into the brain. It is an integral part of who an Autistic person is and cannot be “grown out of” or “cured”. There are loads of ‘treatments’ and ‘therapies’ out there, but mostly they seem to be about trying to force an Autistic child to behave like a non-Autistic child; few are of any real value, and most are harmful.
  3. “Autism is just a ‘boy’ thing.” Girls can be Autistic too. Autistic girls are often better at masking their differences, as well as generally being better at copying or mimicking their non-Autistic peers. This, and the prevalent myth that Autism is a male neurodiversity, has meant that Autistic girls often go unnoticed and unsupported.
  4. “All Autistic people are like the film character ‘Rain Man’, right?” Wrong. Some Autistic people have extraordinary talents and abilities, however this isn’t typical. No two people are the same, and that goes for Autistic children and young people too.
  5. “Autistic people don’t experience emotions.” Also wrong. Autistic people experience all of the emotions that anyone else does, but may express or respond to them differently.
  6. “Vaccines are responsible for Autism.” We don’t fully understand all the reasons why some people are born Autistic and others aren’t, but we do know that it’s nothing to do with vaccines. As we’ve explored already, Autism is a neurodiversity that is hard wired into the brain from foetal development, so Autistic people are ‘born’ Autistic not ‘made’ Autistic.
  7. “Child ‘A’ has ‘severe Autism’ and Child ‘B’ has ‘mild Autism’.” Terms like ‘mild’ or ‘severe’, ‘high-functioning’ or ‘low-functioning’, are not helpful when describing an Autistic child or young person. Each child is different and may have a range of other factors affecting them, for example a disability or a long-term health condition.
  8. “Autistic children cannot show love to their family.” Utter nonsense. Every time my son beams at me, love shining from his eyes, he is communicating the depth of love he has for me. He can’t say “I love you” but he shows it with every fibre of his being.
  9. “Autism is a result of bad parenting.” (Sigh) This started decades ago with studies that tried to link Autism to parents that were judged to lack parental ‘warmth’. Long discredited and completely untrue. I am constantly in awe of the wonderful, loving, caring and passionate parenting of families of Autistic children. They are the very best.
  10. “There is an Autism epidemic.” Oh dear… The ‘evidence’ for this is the seemingly ‘rapid’ change in the statistics around Autism and children. It wasn’t that long ago that these suggested 1 in 100 children were Autistic, that changed to 1 in 68, a more recent study by the Department of Health in Northern Ireland suggests it may be nearer to 1 in 22 (4.5%). Is this an ‘epidemic’? No. Is it better Autism understanding, awareness, diagnosis etc? Absolutely.

So, let’s leave the myths and conspiracy theories to other topics, there are plenty of options out there to choose from, and let’s make sure we speak out and correct anyone who perpetuates these harmful views. If we don’t, who will?

10 Things I Want to let You Know About Christmas for Our Family

  • Guessing what your child wants for Christmas is hard

For those of us who have children who cannot talk or have difficulty communicating, the guesswork each Christmas is hard. We wish our children could let us know what they want and worry about letting them down. Can you imagine what it’s like having a child who is unable to tell you what they truly want? The pressure of getting it right is huge and heavy.

  • We won’t be offended if you buy our kids presents that are aimed at children much younger than them.

It goes without saying, all gifts are appreciated, but we would much rather that you bought a gift that our child could play with than something that might well be ‘age-appropriate, but they cannot use. If in doubt, just ask us.

  • We are tired.

Admittedly, not helped by the dark and colder days, but we are tired. The change of routine and our children being off school coupled with trying to navigate Christmas so that all members of the family are happy is quite frankly, exhausting. You are probably tired too but SEND parents just so happen to take it to another level.

  • Our children might be older, but please bear in mind that they might still *believe*

The big, white-bearded man in the red suit might be a regular visitor to our home for years to come. He’s quite possibly a forever thing.

  • We make our own Christmas traditions and that’s okay.

Our Christmas might look different to yours as we’ve learned along the way that we need to make our own traditions and you know what? That’s okay. We recommend that everyone does the same.

  • We eat what we want.

Speaking of traditions, maybe a turkey doesn’t feature at our table. Maybe everyone has a completely different meal. Maybe foods that feature ordinarily still feature on our Christmas day. It’s no big deal, we just eat what we want.

  • Our friend the ‘iPad’ may well be a big part of our day

Whether it’s for entertainment, distraction, communication or comfort, our child might be using their tablet or iPad a lot during the festive period, and we don’t mind, so you shouldn’t either.

  • Our child might not open their presents straight-away

Some children become overwhelmed with presents or simply aren’t as interested as other children in receiving them. Please don’t take this the wrong way. We appreciate your kindness, and the present will be opened in good time, at our own pace.

  • We really appreciate the family and friends who stick with us and support us

To those of you who stick around, understand and support us, particularly during the holidays, we might not say it often enough but thank you. We love and appreciate you more than you could ever know.

  • We have to do ‘whatever works’ – it’s our motto and it’s a must – please don’t take it personally.

Our child’s needs and happiness are paramount, and this means we live by the motto ‘whatever works’ 24/7, 365 days a year – including Christmas day. Sorry if this means we can’t have Christmas dinner at your house or go to a festive event with you, but please understand that we need to do what works for our family.

That’s all I Know So Far…

“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.

How to Make an Autumn Fidget Box

Make An Autumn Natural Fiddles/Fidget Box!

Autumn is a fabulous time of the year, with so many changes in the natural world and so many treasures to look for and find! We’ve been making a natural fiddles/fidget box, maybe you would like to make one too?

There are loads of wonderful, sensory things that you can add to a natural fiddles/fidget box. I’ll show you what we’ve put in ours so far, but we’re looking forward to adding some beautiful leaves when they fall soon too. Here are the other things we’ve found and added, as well as some ‘extras’ that we’ve included in our fiddles/fidget box too!

Pine cones – We live near some pine woods so we’ve gathered these lovely cones for our fiddles/fidget box

Wooden batons – These lovely, tactile wooden batons were cut from fallen branches in the woods near our home

Conkers – We had to walk a bit to where there is an avenue of horse chestnut trees, but it was worth it to get these smooth conkers (be careful if you use these that you supervise their use as they could be a choking hazard)

Feathers – Where we live borders the countryside, so there are plenty of pheasant feathers. There are lots of other lovely feathers that you can find though, just remember to wash them first so that they are nice and clean.

Shells – We also live near the sea (We know, we’re very lucky), so we could go and pick up some nice seashells to add to the fiddles/fidget box. Again, remember to wash them first

There are other natural things that we’re going to add to the fiddles/fidget box; I’ve mentioned autumn leaves, but we’re going to find some nice smooth pebbles too. We’ve also added a few ‘bought’ items but have tried to make them in keeping with the natural approach as much as possible, which for example means no plastic. Here’s some of them…

A colouring book and pencils

A natural linen scarf

Painted wooden dominoes

Painted wooden maracas       

Painted wooden twist-lock block

Wooden box – Finally, you’ll need a nice wooden box to put everything in. We’ve found one that we can paint or decorate to make it look special.

So, how about creating your own natural autumn fiddles/fidget box! It will be lots of fun exploring and collecting together, and you’ll enjoy using the fiddles/fidget box throughout the winter… maybe you could then make a spring one!

Get collecting!


Overthinking is when you think about something too much and too long. I believe it’s something that everyone does. But I find myself doing it every day. And it’s always about any and everything that my son could possibly do to cause danger to himself.

My son is fifteen years old. He has cerebral palsy, epilepsy and autism as well as a few other medical conditions. He is mobile and that’s where my overthinking comes in at. He is unaware of things that could possibly harm him. Therefore, I’m always thinking of what I need to do to make sure he’s safe at all times.

It’s very rare that I ever leave him in the care of anyone unless he’s at school. And even then I’m worried about whether or not he’s okay. I can’t even go to the grocery store without video chatting, texting or calling to make sure he’s okay. Sometimes I rush home because in my head something is wrong. When he’s too quiet I’ll get up and make sure he’s not doing anything that could cause him harm.

And I know it’s not okay to live like this. It’s just my duty as his mother to make sure he’s always safe especially when he’s not aware of what is and what isn’t safe.

He’s a true boy. He loves amusement park rides, fireworks, go-carts and anything loud. Everything he seems to love gives me anxiety. Except for his love for video games. He doesn’t play them but he does enjoy watching his dad play. He is very active and is always on the go. Sometimes he and his Dad go on car rides without us. And the entire time they’re gone I’m calling. And if they’re out too long I tell him to bring my baby back.

It’s just really hard for me not to think of all the what-ifs because I know my son. People look at his chair and judge him not knowing how much he’s really capable of doing. So it’s hard for others to see through their eyes why I am the way I am.

Marriage and Parenting

I’m always asked how my husband and I can find time for each other while parenting. We have two daughters and one son. Our son relies fully on us for his care.

I think for the most part we find time in-between time for the two of us. But most of our outings always consist of us with our kids. And to be honest it’s what we prefer. Being a parent of a child with special needs has some challenging times. It’s not as easy as some of us may make it look. We can’t just leave our kids in the hands of anyone especially our son Jaylen. His needs require lots of time and patience.

So, for the most part, was home. Being in his comfort zone where he’s able to crawl around is how we get to make time for each other. Sometimes we pick a movie to watch. Other times we sit outside and talk to one another. There have been times when we just walked the neighbourhood.

We usually don’t get to date outside of our home until the children are in school. Then we really take advantage of spending time together with just us. Rather it is cleaning the house together, shopping for the house together or for our kids. You just basically must find time in-between times as I stated at the beginning of this.

I think with us knowing our son require so much care we just don’t let that affect our relationship. Although there are times when we’re both frustrated, we still make the best of our marriage. We still tell each other that we love one another every day. Whenever I go in the store I’ll pick up some of his favourite snacks and we’ll eat them while watching tv.

Just random things at convenient times to keep the love alive. It doesn’t take a lot of work to make your marriage work if you are putting in the time.

Forever Nester

I’ve been asked how does it feel knowing I will never be an empty nester? And before I was asked this question, I never ever thought about it. I guess because I knew that Jaylen would have to be in our care for the rest of our lives. Every time we talked about our future it has always been that we would purchase an RV and travel the world with him.

I know that one day our girls will finish high school and go on to college. One day they will have their own little families. And although the thought of it has me an emotional wreck, we still have our son who won’t get to experience those things. Therefore, we must make the best life possible for him. And that’s what we are going to do.

Our son is the oldest of our three and our only boy. He has cerebral palsy, autism, epilepsy, and a few other medical conditions. He relies fully on us for his care. He can crawl, and he does a lot more than what was expected of him at birth. But unfortunately, it’s not enough for him to be able to live in this world alone. Which makes him our forever nester.

I must admit it does make me sad that he won’t ever get to experience college life or one day become a father. But I promised him that we will get out and see the world together. Although life gave him some limitations, I refuse to allow those limitations to limit him. And even though he won’t be able to do things that other people his age will be able to do. He will still live the best possible life that we can give him.

I never looked at it as me being a forever nester. I just knew we would always be together. And the thought of it never made me sad or look at it any other way. It’s just what I must do and what I absolutely love to do.

Silence like a Cancer Grows

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!