I am sat here thinking what on earth am I going to write about? I’ve been stuck in a bit of a writing funk I suppose. Not wanting to pick up the laptop to share with you what's been happening these last few months. But today I have decided to give it a go...
Back in September the dude was too anxious to return to his school after the long summer break. If I think about it had been coming for a long time but inevitably when things like this happen it turns everything upside down.
My life these last few months has completely focussed on him. He kind of went into what can only be described as an implosion. It was scary, and all those feelings flooded back to me where I felt out of control and short of breath, I was constantly nauseous and felt quite alone in all this.
You see we have been on this path before and it didn’t end well for me.
I ended up becoming ill, once he had recovered. I had held it together for months and then once I knew he was OK, well, I could hold on no longer.
But this time things have been different.
Last time I had to give up my job when it happened, this time I had no job to lose.
Last time I wasn’t looking after myself. I ate all the wrong foods and had nothing for me. This time I am in a much better place with my health, I’ve lost weight and I started running a few months ago. So now I can put my earphones on and leave all the crap behind as I shut the door and get out of breath and sweaty for half an hour. My brain switches off and just for a brief moment all that matters is the muddy puddles I am running through and my heart pounding through my chest as I try and regulate my breathing. I wobble and its not pretty, but I don't care anymore! I do it for me and no one else.
Last time I felt alone, and weak. But this time I have found some amazing professionals that are helping us to get through this. People who finally really get my son and are as passionate as me about getting him the support he deserves. I cannot tell you the difference it makes knowing that someone has got your back.
Last time he was unable to tell us what was wrong. I had to unpick his behaviour and be his voice. Sometimes being ignored and often feeling like his voice held no authority as it was coming from me. And after all I am just his mum!! But this time the dudes voice is being heard loud and clear. We are making sure of that. His voice is the most important at that table, even if he isn’t able to make it to the table, his voice still needs to be heard. And with the help of some amazing people I am certain that this will happen this time.
Last time I felt overwhelmed by the task at hand. This time I know that there is a light at the end of the tunnel. The path is bumpy and long, but I know if we have done it before, we can definitely do it again!
Last time I was willing to be walked all over. I was a newbie mum. Uncertain of how much of a battle it all would become. Unprepared for the judgements and poking around that would happen because of the people who were meant to be helping us not knowing what to do. So, I felt under the spotlight, confused about whether or not my gut instincts were wrong, and I was persuaded to do things that ended up having an adverse effect on my son. This time however I am stronger. I still find any confrontation challenging, it drains me emotionally and I am exhausted with it all some days. But I know the system better now. I understand what I need to do in order to get my son the support he needs. I am less willing to accept things at face value and recognise the strength in having a team on your side. I don’t need to do this all on my own this time.
Because my son deserves the best.
My son deserves to be happy.
My son deserves to be supported by people that truly understand the difficulties that face children like him.
My son deserves future in which he can live as independently as possible.
So right now all my energy is focussed on the goal of getting him better and finding a school that can meet his needs as he faces becoming a young adult with all the complications that brings.
This is where we are at now. This is my life...6 am emails, assessments, meetings, sleepless nights, medication and banging on doors to get answers.
And you guys all deserve to know that if you are going through something similar, you’re not alone and there is always a light at the end of the tunnel.
And I promise I will make more of an effort to start sharing my thoughts again with you.
This time around I will not give in, I will not take no for an answer and I will be his voice for as long as he needs me to!
Mrs M x