When the very little safety I have left is invaded.
When my limits of coping not only mentally and emotionally, but also physically and practically are so stretched that I see no end of it and no hope.
When more aeroplanes arrive to my airport, while it’s in the middle of dealing with deadlocks of delayed passengers.
My son, who has just come out of his low mood, is quickly climbing to the high, intense, anxious, agitated, hyper, manic state that requires my full attention. His carer is also in need of my attention in order for me to support her better and help her through this time. Being severely autistic, my son challenges everyone with his complexity.
We have lost many carers in the past as it was too difficult for them. I cannot afford to lose one a week before the summer holidays.
I am in a mess refurbishing my home to make more space. My son hasn’t had his own room for 4 years and he is an autistic teen going through puberty. So I am squeezing my office and living room into my bedroom, turning the living room into the workshop, so that my son can finally have his room ready for the summer holidays. A place for him to be safe and private. I am investing in it so that caring for him over the next 6 weeks of summer is possible.
It’s interesting how little privacy he has. He needs to be overlooked all the time. I want to teach him to ask to be left alone, as it is a crucial skill for a vulnerable person to help them in the future.
My knee makes that symbolic cracking sound again and the injury I have rested for past 6 months so that I am ready for the holidays, is back in the picture, or rather dominates the picture and completely dictates what I can and cannot do.
The letters that come through the door carry bad news and more work for me to do at a deadline that wasn’t expected. Councils have the power to assume that we all sit on our backsides all day. I miss my breakfast and now my appetite for lunch is off. I am trying not to get ahead of myself thinking the worst, but it’s hard not to imagine what these letters represent.
In one letter, I am accused of misusing my blue badge which I desperately need for the summer holidays. The thought of losing this very life changing possibility is so frightening my chest is tight.
The other, for the sixth year in a row, is telling me that ‘you have been randomly selected to be investigated’. I no longer trust the definition of randomness.
Couldn’t they just say that I don’t fit the norm?
I am a single parent of a disabled child and I am working. That doesn’t add up in the system. I am asked to produce years of documents.
Haven’t they seen my admin deadlock?
I look around the place where I am lying down with my leg elevated and covered with ice packs, and the mess is looking back at me.
I am alone. There is no one else who can pick up where I left off. Any help I get is the help I pay for. That has its limits but I have no limits of motivation to pick up and keep on going - because I have to.
The only thing is the price I am paying for it is huge and life threatening.
If you have ever experienced a toddler in a busy supermarket airport, waiting with mum at the checkout, you can imagine what it’s like when my son comes home from school into a house that’s is covered in boxes, every space taken by an object or furniture that needs rearranging. I will be chasing him all over the place dragging my knee behind me.
Or not! As I move to the kitchen to cook his dinner, the reminder that I haven’t called an engineer to fix my oven is looking back at me. I can’t make his dinner. He only eats hot food, if he eats at all, and I don’t have supplies to make anything that wasn’t planned for the oven.
Changes around meal time can offset my son’s difficulty with eating. We have only just come out of a life threatening episode that costed me greatly. I cannot afford this.
I have to think fast to solve this and as always I push myself and do it, because I have no choice.
I navigate the busy supermarket with care and difficulties and everyone around me seem to be on a mission, unaware, on speed dial, oblivious to my struggle. I am stressed to my limits just from a visit to the shop to get something for dinner.
My son has his dinner and I creep around with my knee after him from room to room, keeping him busy and away from everything that’s not safe until late in the night, so that we can free up his room and make it ready to sleep in.
He is agitated, overexcited and unable to regulate and calm down on his own. Pumped with adrenaline all day, like a toddler at the supermarket checkout for 6 hours, his body and mind is overstimulated, overwhelmed and restless.
I won’t even mention how my body feels.
Putting him to sleep is mission impossible and I pass out many times in the process. The attempts continue till 5 am. My day is now 20 hours long and extremely eventful.
There is no room for looking back as the A&E like shift starts all over again. I don’t know what will pop up unexpectedly, if I will have the capacity to cope, how long will the shift last or if I even get a break. Yet I am ready for action like a soldier and willing to do everything I can to survive this. I am trying not to look back too much at the mission that has been going on for 13 years and I am not thinking too far ahead ether. I have many more years to go.
The look on my son’s doctors faces says it all. Admiration, sympathy, empathy, amazement at my ability to think outside the box and help her understand the issues my son is facing and work together to support him. The sadness on her face when she reaches her limits at which she wishes she could assist. People who know mine and my son’s situation are like a true mirror for me that I don’t often look into.
The only hope of some independence and freedom that I have is the belief in the success of my company and my project.
This is what is giving me the light at the end of the tunnel. The possibility of some humble financial independence where I can recruit and help myself without the fear that the next government will cut the social services budget, which will make my ‘A&E shifts’ ‘break-less’
That I can rest my injury till I am better without having to push my body through hell without a choice.
That I will have some sort of human rights as a single mum and carer. Right to eat, sleep, shower, to be sick in a human way, dignity, privacy, choice, leisure, friendship, love, family and most of all the right to choose.
The hope that my son, who will be 16 very soon, will have a some sort of future and activities with #teamnono. The hope that he will have a purpose, a place to be, which isn’t what I see available for young people at the moment.
The hope that I won’t need anything from the council so I no longer am treated as a file, out of norm, as if there is not a box to tick off for me.
✔️ Single parent with chronic health condition, with disable child with complex needs, running a company and supporting young people with autism into employment.