As a mother to a child with disabilities and additional needs I often spend most of my time in “fight mode”. Either services are accusing me of doing something I shouldn’t, or of not doing something I should. Or, even worse in my opinion, the passive aggressive approach of not answering calls or emails and sending you an endless paper chase until you finally reach a dead end where a different professional (who has now replaced the original professional you began your mini quest with) tells you to fill out a form. The same form you filled out originally that got passed to the wrong person, was lost, was found again and was then returned for not having the correct information on, before you were passed to your new contact. And repeat.
This lifestyle is draining to say the least. I often feel that in order to protect myself I imagine that I’m surrounded by castle walls. As and when each professional service knocks me or slows me down, one of the four walls that surround me and protect me are damaged, or sometimes completely destroyed. I build them back up again, as quickly as I can. This is where self care comes in and boy is it essential. It keeps me fighting another day. It keeps me protected. But sometimes, when the world is a particularly cruel place, I get attacked from all four sides and all the walls come crashing down. And before I can even begin to consider building them back again with self care and kindness, the next huge blow hits me, and it takes me out. And this is where it all begins.
Anxiety takes hold.
It’s been a really tough week. My walls have been starting to crumble. We have been fighting some really ridiculous battles. We need letters writing, that’s been a big one, and for whatever reason you can fathom (money, staffing, disagreement, disorganisation, communication breakdown) they haven’t been written. Kiddo has been going through a regression with his eating, he isn’t sleeping and levels of social care support are less than desirable. Pressure has been flying at me from all angles.
I attended a meeting earlier in the week and as I went through the door I did not feel my usual confident self. I did not have my walls around me. I was vulnerable. The meeting found its way through the afternoon and mainly consisted of professionals asking me to list the problems and challenges that we as a family were facing. I obliged and began to tell several tales of woe of which, to be honest, I really hadn’t wanted to revisit. But I had to, because these things have to be put on record don’t you know. Throughout the afternoon hardly anyone offered advice, support or suggestions of how to move forward. I was met with mostly negative answers, except from one person. As the meeting wound to a close and the room emptied, I desired so much to be on my own. I was helpless. I was alone. I had been hit when I had no castle walls around me to protect my mental health. Man down.
That afternoon my mind was a racing tornado of a mess. Words, ideas, problems, anger, desperation, exhaustion, all flying through my brain at a speed worthy of being entered into the Guinness Book of Records. And I couldn’t calm it down. I kept going that afternoon, exhibiting a persona that would fool anyone but maybe one or two people. I could feel my heart racing and beads of sweat forming on my forehead and back. I couldn’t work out how to collect clothes from my tumble drier. It took multiple steps of collecting the clothes basket, unlocking the garage, collecting the clothes and so on. My brain couldn’t achieve the calm equilibrium it needed to perform such a mundane and simple task. After “helping” my husband do kiddo’s bath time he suggested I headed to bed and absorb myself in a magazine or book. For I was not fooling him one bit. I did try, but I felt so suffocated by life, as though my head was barely above water and every breath was a carefully considered deliberate act, as I know longer had the ability to breathe automatically.
Sleep did not come naturally that night. After taking medication it still didn’t come. I knew I was in trouble. The next day things did not improve. I was nervous, I was jumpy and my body did not feel confident in taking the next step forward. And I don’t mean metaphorically here, I struggled to actually walk. Why? Because it went against every natural urge I had to climb back into bed and wait until all my walls had been built back up again.
But I’m the mother of a child with multiple additional needs. And time is no longer a luxury I have. So through the day I went, brushing away the sweat from my brow, taking unnecessary trips to the bathroom in order to count to ten and give myself a pep talk. My aim today was to fool them all, not show my weakness to anyone. I think I managed it, who knows. But I made it home with no panic attack having surfaced while I was in the company of others.
Nowadays my recovery is a lengthy process. I may shut myself away for a while and try and recuperate. But I won’t always have that luxury. If you think I’m acting whilst in your company please don’t be offended. This is all part of training my brain to understand that these situations are ok and I am safe.
Life shouldn’t be this cruel to someone who spends their days fighting for their child, but having to spoken to many other parents I feel it is just part and parcel of the package. If only recovery time was as well.
Thanks for reading, and look after yourselves.