Looking after our Special Child’s emotional well being is our responsibility, and many of us rise to this challenge every single day!
Yet, as Carers and Parents of Special children, how many of us can honestly say that we take the time to look after our own emotional health? This blog post today is about us the Carers and Parents , and how we can learn to cope mentally, with the everyday stress and challenges of Autism. All my readers know how amazing we know Jay to be, and how much we love and respect him, but if Autism was easy then it would not be a special Need, and so to talk openly of the various challenges we face is to be real here, because I never promised just to discuss the brilliant side of Autism. We know Jay to be clever and intellectual, and incredibly special in his gifts. We acknowledge this every day and his loving nature makes him a joy to be around. Putting all this aside, the other side of Autism is where the stress can come. Early on in our journey, before we received the diagnosis and then the support, we were completely stressed all the time. Constant Meltdowns and Anxiety and Sensory Processing issues and Phobias were all present in Jay in our everyday life and to add to that, no sleep for us all before Melatonin appeared. Alongside this we were working Parents too. My point is, is that four years of constant stress and pressure started to show in us, and in me particularly, as the main Carer, and eventually the scars began to show. I stopped sleeping, and had constant dreams about being chased by a T rex and at the time, I assumed the T rex was the Autism. I had always been fit and well, and suddenly I was feeling drained all the time, and because I did not have the support network I now have, I was left alone to deal with my issues of all I had to worry about, on top of a stressful job. Sometimes I felt so isolated and I could not even go in to my town, as Jay was constantly in a Sensory Overload Meltdown there.
I am sharing this early memory, simply because it has a lot of relevance to this post. Because, you see, after four years of what I now know was chronic stress, I began to feel ill. I did not know what was wrong, or why I was always in pain and utterly exhausted, and why I kept forgetting the Children’s names at work, or why I suddenly could not walk up a hill. All the while I was caring for Jay who was 6 at this time, and at this point we had some support in place in terms of Occupational Therapy and Psychologist support, but I just knew that something was not right in me. I knew I had suffered a lot of years of worry and stress and also lack of sleep, yet I could not put my finger on what was wrong. Then the truth came out. In August of 2016 I was diagnosed with Fibromyalgia -another Autoimmune condition that causes chronic fatigue chronic pain and stiffness and it took some of my mobility. I could not walk far and was in chronic pain, and had chronic fatigue. I became aware that what I thought was the aftermath of Jay’s diagnosis years and his younger years when he could not speak and would just scream all the time, was actually a real health condition and a debilitating one at that! I did my homework and it is well known now that Fibro can develop after an episode of extreme mental or physical stress on the body, and the immune system can respond to long term stress and also lack of sleep and cause this condition.
Now of course I am not blaming Jay at all. I could never blame him, it is not his fault he has Autism. I am simply saying , that the effect on me could have triggered the condition to come on, and as I have had Autoimmune conditions before I am prone to them. The stress certainly would not have helped and I realised that I had to make changes. I left my job and took a part time admin job. I referred us as a family to Special Needs Social Care team for some extra support, and the referral was the best thing I ever did. We went through the process and were referred on the Disabled Children’s team and were granted money for Respite care year round. We now get respite support every two Saturdays, every Thursday, and all through the holidays. I need help to care for Jay, as my condition is seriously debilitating and the mobility side means I do need crutches at my worse flare ups and so I cannot hold Jay, so a worker will help me to take him out at my worst Flare times. I have lovely workers who support our family and it also is so important for Jay as he needs to be away from his constant Anxiety and OCD rituals he has within the home. Going out with the charity we pay to help us, means Jay is able to have experiences away from us with other children with SEN whom he often knows from his SEN School, and that I can rest up and be ready to go again in to my caring role when Jay returns.
So, we now have support in place and a constant steady routine that Jay loves and is happy with. He loves being with Mummy and he also has close bonds with his three workers too. I do believe that my Fibro was caused by that period of stress in my life plus my own immune system responding badly to stress, and so a period of reflection was needed. I had learned Tai Chi a few years earlier to having Jay and so I went back to the principles of this ancient art. Our bodies require breath to survive. We need to breathe. But many of us do not take the time to stop, stay still and be present in the feeling of breathing. Tai Chi teaches us to be grounded like a tree. Our breath is the life force running through us and keeping us well and healthy. When this balance is upset by events and emotions and of course, stress, the rhythm is broken, and we forget to stop and just breathe. I went back to taking time each day to sit in meditation, and to just simply breathe in and out steadily. Proper Meditation creates an amazing feeling of calm, where the whole body relaxes and the moment you stir from this you feel obviously calmer. I have shared before that I love all things natural, and Jay responds to this too. I only have to watch a beautiful sunset or a starry night to feel calm and relaxed and happy. I go Bird watching and Nature watching and this is a lovely calm thing to do. Like Jay I see beauty in the natural world and I do feel blessed to be able to pass that on to my children, so that they may also use it when times gets hard. I believe that to be close to nature, heals us and I needed to be healed. Even if it never heals my condition, it gives me the tools in which to cope with it and to help me care for Jay.
Staying calm is the single most important thing a Parent Carer can do for their child with Autism! The way in which we react is everything. I have never been anything but calm with Jay, as I learned very early on that any other reactions makes him so devastated. This is because children with Autism do not even know how to cope with their own emotions, so to ask them to try and work yours out is like asking them to fail! It can be very scary for a child with Autism to hear someone lose control and it is best avoided. Over the years I have gained a strong sense of self control. My husband and I do not ever raise our voices or show we are displeased if Jay is in meltdown or upset. We simply say to him “you are safe and you are okay. Everything is going to be alright. This is just a feeling, it will soon pass” This is what we say no matter what is happening. There is a saying that goes ‘ if you cannot change the situation then change the way you respond to it, this is where your true power is’ Learning to respond to difficult and stressful situations that constantly come at you as a Parent Carer of a child with Autism, in a calm efficient manner and in a non-emotional way, takes lots of practice. But if we truly put our minds to it, we can achieve this. It is a skill to learn and you have to want to learn it to achieve it.
Worrying is very hard to control for us, as there are so many worrying elements with Autism and in Jay’s case the Global delay, which means he will always need caring for. The future! Oh my, I do not even go there now in my mind. I pop the thought in a box in my mind as its far too overwhelming. I am an older mum you see in my 40’s. The other day we went to the Dentist with Jay, with the sole purpose of getting him a referral to a Specialist Dentist as he would never cope with a drill in his mouth and would need to be sleeping for them to do it. Jay did so well and let the Dentist look at his teeth. I told the Dentist our dilemma and she was understanding and said she would make a referral. But she said sometimes they have to need actual treatment for them to accept them, but that Jay’s condition may be enough. She then asked me to write the condition down on his health form, but afterwards because Jay wanted to go, I only wrote down briefly-low-functioning Autism and Global development delay. There is so much more to Jay’s condition that this and when I got home I began second guessing and thinking I had not said enough. Oh and what if he needed a filling and was in pain and I did not say enough? All these questions! I suddenly stopped and thought ‘no I said enough it will be fine’ But I constantly think with his Health, have I said enough or spoken out enough?
Going back to reacting to stressful times with Autism, let us return again to the most primitive of systems we have- our breath. It is life. Children with Autism have strong fright or fight reactions to many things and so they are constantly in high alert which is utterly exhausting for them If we can learn to train our minds to reset and re group and to still our turbulent emotional responses to stress, then in time so will the child learn these coping strategies. All along I have taught Jay to take deep calming breaths each time he is anxious or stressed or going in to Meltdown. I tell him to pretend my finger is a dandelion and he can take a deep breath to help the seeds to fly. This has worked for years for Jay and now I can say take a breath in Jay and out and he will respond and understand. It really does help to calm him down. This most basic and vitally important system we have is useful in also controlling not only our emotional responses, but also our reactions. If we react always in stress, and with highly emotional responses, then our immune systems will, for that moment, become repressed and that allows illness to get it. Be that a cough, cold or flu, or in my case and many others, a more profound condition like my Fibromyalgia. I really wish that I had known all this in the beginning of our Autism journey when we had no help understanding or support, and that I had not allowed myself to let stress in. But I guess when we go through hard times we are not really mindful of just how much it is affecting our over all wellbeing until we come through the other end and reflect and realise just how stressed we were.
It is so important not to blame the child or even feel resentful. Even negative emotions like these can bring down your immune system and cause ‘fright or fight responses. I believe the best thing we all can do, is to disconnect from that side of Autism and adopt a ‘can do’ positive attitude that we in Yorkshire call the ‘crack on’ attitude. Again, remember this- if you cannot control what is happening to you then control your response to it- that is where your true power lies. When times get hard with your Special child, no matter how you feel, stop and think, take a deep breath, and breathe it out, before you respond. The long term goal here is to re-train your mind to respond calmly. To master the art of remaining calm is an example of a truly strong mind. It gives you a coping tool to find real solutions to whatever Autism throws your way. It helps your child also learn to remain calm or to re set and calm down, and also means your mind and body will stay more healthy. This leads to a clarity of mind and re trains your thinking and results in a calmness of spirit that can get you through the bad times and give you hope. Then, when the good times happen you are able to truly appreciate them for what they are!
A healthy body starts with a healthy mind. Looking after our minds is just as important if not more important as physical health as the body will follow wherever the mind leads!