Surviving Each Day On Running On Empty!

I sat in front of my friend ready to admit the worst thing I could possibly say.

"I am beginning to not enjoy my child."

I was ready for him to lay it into me. I was asking for it- Maybe begging for it in some ways. He is the type of friend to say it bluntly to your face unforgivingly without any hesitation, - The purest of friendship! Maybe I was looking for some kind of metaphorical slap around the face to get my act together. Instead he looked into my eyes, plainly and seriously and replied,

"Well I don't blame you. What is she now? nearly 7? How it's taken you this long to feel this way is remarkable"

That reply stopped my world in that moment. I just felt so broken. My raw thoughts laid bare and naked and vulnerable, out in the open. But also, over the top of that, I felt so relieved that someone else could see it. Solidarity. It wasn't just in my head.

In my head I had built up this looming great wall, circling around me, full of overpowering guilt and shame at failing motherhood: The one thing I had prized myself at in my life. The one thing I wanted to be known for in my life. "If all else fails, Anyone who knows me would say I am a good mother, That's all I ever want! Everything else is a bonus!"

I prized myself on my parenting of my two older children. Both mellow and calm, quick to learn and understand, you know, those 'model children'. Nothing ever prepared me for number 3... not even studying Childcare and working with children could prepare me for my whirlwind child.

She came into this world like a tornado and has shook life up for everyone around her, ever since. Some maybe would say aptly named, she is unlike any person I had ever met, and still too this day- have ever met.

Looking back at the years of her life, though so small still, and definitely in comparison to the years before she entered the family, life has changed so many times in these years, I have changed so many times to try keep up with what the situation needs. I try to think how to express all these years within a paragraph but it seems so impossible to achieve a meaningful summary, so its better left unsaid and with just the plain simple facts:

'Autism Spectrum Disorder. Global Development Delay. Sensory Processing Disorder. Dietary Restrictions. Special needs because of the above'

-That is what is written on her diagnosis.

You never believe you will have a child with complex needs. You never fully believe it at the beginning. It is a gradual process of acceptance. It is a gradual process of learning. It's a gradual process of realising that "this is not going to work" on the simplest of situations. Plan B's. Plan C's. It's a gradual process of grieving for the life you once had or the life you thought you were going to have. The things you were going to do. It's a continuous practice of feeling guilt and then releasing guilt and then doing it all over again.

You have had this mental image of some kind of parent manual you have obtained over the years... Just chuck it, throw it out of that fucking 'mental image' window in your mind, because all the rules and all your knowledge doesn't mean anything here. You are about to re-learn everyone from scratch. The hard way.

You learn to live on a constant state of high alert. All the time. It is relentless. Even those lovely, happy, calm days (Which do not come around enough) there is no relax or refreshing yourself because you are constantly waiting for the next incident. Walking on eggshells. Anticipating the next situation. You become battered and weathered down by the storm of your newfound life and parts of your essence can become eroded and remoulded.

You find yourself a different person to the person who had entered that delivery room to give birth.

I thought I knew about special needs. No-one ever knows. Not until you walk in those shoes yourself. Those shoes are uncomfortable at best. Un-worn but made poorly and 2 sizes too small! You will learn to patch them up as you go, along this dusty road of life you've found yourself on.

Managing life as a special needs parent is a delicate balancing act. It is in constant fluctuation of good days and really bad days. And I mean REALLY bad days. And ever so rarely often, you have this amazing day. Those kind of days provide an appreciation that is paramount! That appreciation shapes you in a way no other can. It humbles you to the core and makes you really see what is important in your life. Those days are the best teacher. Those days keep you from breaking apart.

I cry a lot. Most of the time I cry out of frustration. It's another thing you learn to live alongside with. Frustration. Your child is also feeling that presence in their life. They are frustrated also. They are overwhelmed. I just have the words to describe it. If it's not the child being frustrated, then it's the system. Everything suddenly seems to be a constant battle.

You quickly realise that this world is not designed for anyone who has any lifestyle which doesn't fit into the tightly moulded design of human society's box. Autistic children can't fit into that box, They barely want to stay put in that box, most of them want to jump on the box or off the box or even throw that box! (metaphorically ofcourse, at your head!)

Society revolves around churning out humans for productivity. It is always about the results. Look at any mainstream schools. They rely on the academical results. It isn't about the individual character of the student but the collective outcome on productivity that student provides for creating results for the school. Children quickly become a statistic on the national statistic charts. Education ends up being what you get out of the child, instead of what the child gets out of education. Special needs children just cannot adhere to this.

So to value the rights of the child, and the human rights, SEN children have things implemented to give them the right to learn in the way they are designed to learn. But these things are more costly to the governments and the councils than herding large groups of children into one box that "one size fits all"

This implemented plans for your child, designed and tailored for your child, is a fight to win, and a long one at that. It never seems to be ever ending either. There is always something new to "start the process for" (That is my SEN's teacher way of saying 'We will start the fight for it')

Obviously it is not an literal fight, but I am using it as an analogy. Sometimes however I have been in situations where I have 'fought my case' for my child to get the resources she needs. So though these fights are not done with weapons or fists, they are done with using the right language and tone and knowing your rights when it comes to the law. So reading back over this paragraph I wont apologise for using this analogy for describing what it is like when trying to get everything you need and what you are entitled to for your child. It is in your rights as a parent but it is not given to you so freely. It is like a battle in some drawn out social and political war. They will try to prevent you in requiring what you need for your child on the grounds of saving money at every corner you cross. You end up feeling like a pawn in some big game of chess that is out of your control.

After every small victory you have, you don't feel like you've won. You still have to live with the lifetime of difficulties of having a child who struggles every day. And you, yourself are most likely already onto the next task at hand, preparing the next battle.

At some point last year I told another of my friends, "It can't get worse than this!"

Note to the world: Don't ever say that - because it fucking can! It can always get worse!

This past year has been such a low point for us all. I realise now I had spread myself too thin over these years. Stretched and pulled at all corners. I was burnt out! - There was nothing more I could obtain from inside of me. There was nothing left inside to give. I was running on empty.

Taken from helpguide.org:

"The difference between stress and burnout

Burnout may be the result of unrelenting stress, but it isn’t the same as too much stress. Stress, by and large, involves too much: too many pressures that demand too much of you physically and mentally. However, stressed people can still imagine that if they can just get everything under control, they’ll feel better.

Burnout, on the other hand, is about not enough. Being burned out means feeling empty and mentally exhausted, devoid of motivation, and beyond caring. People experiencing burnout often don’t see any hope of positive change in their situations. If excessive stress feels like you’re drowning in responsibilities, burnout is a sense of being all dried up. And while you’re usually aware of being under a lot of stress, you don’t always notice burnout when it happens."

I had started to feel detached from everything around me. All the things that once brought me happiness before became so mediocre. I just felt numb to my environment. Everyday felt so irrelevant. so very long. I was lying flat down at the bottom in the pit of despair, not even bothering to try and claw myself back up anymore, just lying there looking up out to the real world, wondering if it was even worth having another go at 'making an escape'. I considered if it was even worth being here anymore.

I stayed in bed a lot. Sometimes sleeping. Mostly not. I stopped laughing. I even stopped crying.

I can't remember an exact turning point in my health but I remember one huge pinnacle was the email to her tutor my eldest daughter had written where she referred to me as "her idol". Reading those words brought a huge flame of burning inspiration and aspiration and motivation back into my world. My saving grace - in the form of my daughter. I had led myself to believe everything I had done had become irrelevant and actually in the eyes of my own child, I couldn't have been more wrong. I was important. She saw me as a good mother. The one thing I wanted to be.

Now I am finding myself starting to try to recover. I have reached out to people around me for help. I have started to laugh again. I have started to look for changes in my life. Changes which need to be big and life changing to make some impact to me. I'm finally asking for the support I need to heal. Life isn't about going through this alone and I know I definitely can't. I have a feeling this burnout will be with me for a time to come still and I will be recovering for a long time, but I am now willing to put myself first in helping my recovery and looking to the people around me to help in my recovery. Everything feels tilted on the edge of a balancing board, everything feels like it could turn in either direction, but at least I am feeling again. That brings me hope. That I am once again clawing my way back up from that metaphorical pit.