We all have off-days. Or off weeks, months, years! Here’s a reminder to do the basics to look after yourself.
But I also remind myself when I feel exhausted that children with additional needs often feel that way all the time… it’s a good reminder of how they experience life and how we can help them.
A few years ago on a Friday afternoon, I received an email telling me that my child would not be going to the school that I had pinned all my hopes on.
[PSA: I am talking about school choices for children with additional needs and disabilities for whom choices are remarkably limited.]
The air was sucked out of my lungs. The ground fell away from me. Suddenly my vision narrowed to a pinprick in front of me. I couldn’t feel anything and at the same time my skin was alive with painful touch. The textbook description of a panic attack, I felt not only as if I were dying, but as if my child, husband, other children and extended family were dying.
Literally. By which I mean everything in my body was telling me that we had reached the end of life.
Many of you will read this and scoff, thinking what an overreaction I was having. The kinder among you will pity me and the extreme anxiety I was feeling – I must have an underlying anxiety disorder. Some will knowingly tut and explain that this is exactly why it’s important not to develop an “overprotective” parenting style.
The reason I bring this up today is that time has helped me see the bigger picture and I think it’s worth exploring, whether you are a professional supporting a family, a parent waiting for this kind of decision, or a parent in the midst of that gut-wrenching panic.
I’ve described to you in my opening paragraph the sensations in my body on reading that email. My feelings were not actually even engaged at this point. My lizard brain was in complete control. It had assessed the situation and concluded that we were dying. Quite rightly, it had then engaged any and all survival mechanisms (possibly too many at a time!!), which importantly disengages the owl brain (Owl usually wants time to think, by which time the tiger has eaten you). There are loads of videos on YouTube and other platforms that talk about this, but here’s one to get you started.
Eventually, my heart rate settled a little, and all of those fight/flight symptoms reduced just enough for my Dog brain to get a look in and turn the sensations and input into emotions, feelings. Let’s take a look at what my Dog brain was telling me:
Devastation: I felt as though the world had caved in. All my hard work had been ignored, all the building blocks I’d so carefully put together had been swept aside. I was back to square one, much like Sisyphus.
Sadness and isolation: I didn’t have a plan B. Not because I desperately wanted plan A, but because plan A had been the only one I’d found – and nobody had suggested another plan. I felt terribly alone and just wanted to cry.
Frustration: I felt completely unheard – my flawless, calm and quiet logic had been ignored.
Anger: How dare the system, the people not listen to my clear, considered arguments? How dare they suggest something that ignored all the evidence I had presented and the risks that came with their ideas?
Despair: Where next? And this was really where I landed. There’s little progress to be made from despair because despair is the land where Hope goes to die….
From Despair, I reached out to a wonderful friend, knowing she would understand. She had been in my shoes and she would know what to do next. I will be forever grateful for her response which, at the time, filled me with a sense of shock and betrayal.
“It’s not the end of the world!”, she said, “Just because it isn’t the path you have chosen doesn’t mean that it will be the wrong one.”
She had the luxury of not sitting in the toxic hormonal soup of panic, or in the painful moment of emotion. She had experienced similar situations and had survived… and her Owl brain was alive and well and could see far further than my extremely limited vision.
This amazing friend is Yvonne Newbold of Newbold Hope, who helps thousands of families understand and support their children… Go visit!
Eventually, panic subsides. It just does. We are not designed to live in a state of heightened panic and we find ways to normalise any situation that we sit in for a period of time. And when panic subsides, the emotions start to allow room for thinking.
My Owl brain loves this bit. It comes in, the conquering hero, almighty rescuer, knight on a white horse:
“I can fix this! No problem is too big for me! I will find the right name, email, person and I will correct this Gross Injustice!”
Of course, it then came to a screaming stop as it realised that nothing happens between a Friday afternoon and a Monday morning… As it happens, in this situation, I was able to find someone to speak to and eventually after much discussion, the local authority “conceded”. They agreed that my preferred school was the best option.
But. But. But. Before you allow your Dog brains free reign…
(The professionals among you will no doubt be feeling that here is another pushy parent who has got her way, where many parents don’t have the resources to push like that – how unfair!
The parents among you may be whooping, thoroughly vindicated in the knowledge that once again, the evil and stupid Local Authority has been shown its inadequacies!)
Because our SEND systems are truly bogged down, mired in bureaucracy, deadlines, poor resource and all manner of irksome nonsense, nobody had the time or knowledge to sit down with me and have a proper conversation.
We continued on the path that I had identified as most likely to help this young person. It was not a failure. Nor was it a success.
With the privilege and value of hindsight, I can now say with absolute certainty that the initial proposal would not have resulted in anybody’s death. I suspect it would have caused far more problems than the path we followed.
I am also quite sure that if we had worked together, we could have found a compromise.
I was left to figure out the Reality of my situation on my own. There was no advice to be had that could in any way be deemed impartial or indeed focussed on my child’s true best interests. Far too few people in this system have enough knowledge of the breadth of additional needs, or indeed the various educational settings or alternative pathways to advise those of us with complicated young people.
So we muddle our way through and find it increasingly difficult to lift ourselves out of our emotional muddle to be able to see the wood for the trees…
If you are a parent reading this, let me gently suggest a couple of things:
If you are a professional working with a family – closely or merely by email:
It can be very difficult, in the midst of a panic attack, to believe that life goes on. But it does! And our capacity to adapt never ceases to amaze me… everything passes and if you are feeling at your worst, I guarantee that you will feel better…
Being a parent is a full time job – we know this.
Being a parent carer is the same – on steroids!
Our children with additional needs also require additional time. Additional attention, additional affection, additional looking after.
So how do you find the essential time for yourself, your partner, your friends that will allow you to be the parent you want to be?
In a world of compromise I’ll offer a few ideas that helped me from time to time. Let me know in the comments of things that have worked for you!
It’s really important for any parent to try and hold on to a sense of identity. Many of us forget that, and it can be very painful to “wake up” one day and discover that we have invested our whole being into parenting. Because whatever the degree of need our children have, they will eventually be grown… and we can find ourselves lost, alone and very much on the verge of despair.
So here’s my challenge today: who do you want to be? What hobbies would you like to try? What was your passion before having children?
Tugboat SEND Navigation 