We waited a long time for a diagnosis, not for a label to help us get the support that we desperately needed as a family. We got the Asperger’s diagnosis, was handed the piece of paper from CAMHS and asked if we thought it would be useful to be put on the list for a course to understand the diagnosis. I agreed that would be really useful, after all, the main reason we wanted the diagnosis was to get help!
Every day we dealt with a very frustrated child, I was screaming for help, the teachers were not coping, looking at me blankly waiting for me to come up with the miracle answer or a reason why my child was behaving the way he was in the classroom. I would get comments such as “We have never seen this behaviour before, it came from nowhere ” or during a violent meltdown my child would be told to use “safe hands, we must not use angry hands” or “if you can’t behave nicely you won’t be able to attend Minecraft club”.
All these phrases and consequences, but nothing was changing, no one had a clue how to understand why my child was acting violently in the school.
The violent episodes in school were becoming worse and I knew that exclusions may be on the horizon (in fact they were a year later). After a challenging day at school home didn’t get any better, anxiety was still high. I felt a heavy burden of weight on my shoulders that it was possibly my parenting skills. We tried sticker charts, rewards and consequences – none worked. Even more no-one seemed to know the answer, not even the professionals. I was thrown strategies for a typical Aspergers child, these made things worse. Worn out, exhausted and desperate for help I had to search for the answers myself to reduce the anger that my child was holding inside him.
I joined a support group on Facebook – a local autism charity in my area. Here, I met a mother who told me that she understood exactly what I was going through and that she experienced very similar experiences with her son at that age. It was recommended I send a request to join Yvonne Newbold’s page where I found out that I was not the only person that was going through this, I was no longer a bad mother. I could stop questioning myself. I was also no longer the parent with the only child in the world that was experiencing violent episodes.
My first read was a useful guide in the basics of managing violent and challenging behaviour.
After reading this things became a lot clearer, things needed to change .. my child didn’t need to change but I had to tweak my parenting skills which meant staying very calm and very non-confrontational. It can be very difficult when you have just been hit in the face, or your living room may be trashed. But it works! I was intrigued to learn more, to speak to others that were going through the same as us so I joined Yvonne’s closed Facebook group.
The group is getting bigger but it just shows what a huge issue we have with no training or research.
Yvonne Newbold since has helped me and thousands of families to understand our children behaviors. Yvonne was the first person that actually seemed to make a lot of sense. The first thing that I learned was not to change my child but to change my parenting. Since then things have improved massively. I have learned a lot and still learning from this marvelous lady which brings me to the reason for writing this blog as I attended her workshop yesterday. Most workshops are down in London, but luckily the Jigsaw group teamed up with Yvonne to bring her to Leeds. There is talk that we may be lucky to have Yvonne back again in Leeds again. Keep posted on the Jigsaw website.
For a list of workshops that are running with Yvonne please click on the link below:
All this time we waited for that “label” to access the help, my letter came in the post for the course a year and a half later! The huge backlog of families crying out for help had resulted in extended waiting times for training. In the meantime I had done my homework, I had found Yvonne and was heading down the right path.
In this space of time, we explored our child’s sensory profile more in-depth, understood our child through his eyes and realised a different school setting was absolutely necessary. Things calmed a lot, we have a different little boy. It is early days, as parents, we are taking baby steps and taking each day as it comes. Anxiety creeps up now and again but I think we are on top of it, however, this doesn’t mean that I know everything about parenting. Learning all the time, listening to others, helping each other and developing our own army to spread the message that THIS IS NOT YOUR FAULT!
Yesterday was a special day for me, I attended the workshop that covered how to reduce violent meltdowns. I always get a little nervous attending events such as these, you wouldn’t think so when you meet me as my mouth takes over and the nerves seem to disappear. I guess I was worried that I was made to share my story with others, it can be emotional to share such personal information with others that you’ve never met, but just remember you’re all there for the same reason and are never judged.
Yvonne Newbold … how would I describe this lady, inspirational, kind, caring and makes a ton of sense! I could have gone on longer I have so much respect for this lady. A mother herself to three wonderful children who have been through it all! Looking after her son Toby who was experiencing years of violent meltdowns with no support. Yvonne sadly was diagnosed with breast cancer in May 2012, which is now incurable, she spoke about her bucket list which is simply to help others, to raise awareness, and yes I did shed a tear, it took me back how truly caring this lady is. Yvonne has been doing her workshops now for 2 years up and down the country.
Yvonne entered the room after a busy day yesterday at the University of Northumbria who are working with her on all the academic research she has been collecting to produce her second book which will hopefully reach the hands of many professionals who work with our children, so that training on VCB (Violent and Challenging Behaviour) can be accessed. I wish her all the luck with this and can’t wait for it to be published!
Yvonne started the workshop with some figures that shocked me, 56% of children with an autism diagnosis will have a child with VCB. 25% of children with a learning disability will have VCB. Why couldn’t the professionals tell me this? Why were so many asking why my child was behaving this way? Why was I made to think it must be our parenting? Why are so many parents told to go on parenting courses? The answer is because there has been no research. With Yvonne’s hard work I am hoping that this is underway. So you can sit back and tell yourself again THIS IS NOT YOUR FAULT.
I learned the causes of VCB:
- Feeling threatened
- Flight or fight
I have been using the strategy of remaining calm throughout for a while now. I am a big believer with any child in the heat of the moment that remaining calm will see a positive response.
Yvonne talks about the tone of voice we use in meltdown with our child. Our child has a massive unique sensory profile. I may be talking a little stern and he would see this as me shouting. Even a demand I may be accused of shouting. I am going to try to sing, yes you may think I have gone bonkers but the tone is then shown that it is no longer a tone that my child may hear different.
- Stay calm
- Only one voice in the room
- Short sentences of 5-8 words
- 8 second quiet
- Then repeat
Masking was briefly mentioned, I’ve recently been in touch with another family who is going through the EHCP process and trying to help them on the right path, the little girl is a masker .. but why is she the masker, school will tell the family that she is fine at school we have no problems, mum, on the other hand, is getting a very explosive child at home. They are trying to work with the school to solve the problem but the school is having none of it and mum and dad are told it’s their parenting to blame. If a child is masking at school the anxiety in the setting is extremely high. Why can’t our professionals listen instead of thinking the parent has gone crazy.
In our case our child was the opposite in the classroom for so many reasons, it wasn’t just his autism – there were underlying issues a lot deeper than they ever knew.
Many children with processing disorders report feeling scattered or disjointed which may be related to a faulty proprioceptive sense. Children who are clumsy, uncoordinated, and sensory seeking are often experiencing proprioceptive dysfunction. The following are common signs of proprioceptive dysfunction:
- Sensory Seeking (pushes, writes too hard, plays rough, bangs or shakes feet while sitting, chews, bites, and likes tight clothes)
- Poor Motor Planning/Control & Body Awareness (difficulty going up and down stairs, bumps into people and objects frequently, difficulty riding a bike)
- Poor Postural Control (slumps, unable to stand on one foot, needs to rest head on the desk while working.
This is just the tip of the iceberg. No child can learn when anxiety is this high.
We must focus on changing ourselves not our children.
“Be your child’s meltdown partner” – I loved this phrase in the workshop.
“Be with them .. You can’t change your child but you can change you”. You can change the way you think about your child, the way you respond to your child, the way you behave around your child.
I believe in listening to my child more – being on his team worked wonders. I remember the days collecting my child from the playground classroom the teacher looked exhausted and pretty relieved to hand him over to me. The notes passed to me with the “reward” charts of red (unhappy) faces. I smiled at the teacher and thanked her. I remember my little boy looking up at me in worry – knowing that he hasn’t had a good day.
I greet him with a huge hug, hold his hand tight and walk out of the school grounds telling him it is all ok, he looks up at me confused, he looks exhausted from a challenging day. Luckily we got him out of that situation and we now see a completely different little boy.
- A boy that wants to learn again
- A boy that no longer hurts others
- A boy that believes he can do
- A boy that is thankful
If you would like to learn more about Yvonne and her story you can buy her book from her website or attend one of Yvonne’s workshop where you can also buy a copy and even get it signed!
I’m thoroughly enjoying reading it!