Talk to me about looking after myself and wellbeing
- Sarah
- 1 day ago
- 7 min read
“Being compassionate to yourself now is investing in your ability to manage the future.”
That’s not a ‘famous quote’ but one my late father would always say, and as hard as it is to do – it’s important that we, as parents at very least give it our best shot.
Being a parent is hard, forget the ‘Insta-mummys’ with their seemingly perfect ‘all shades of beige’ houses with children tastefully clothed to match. Behind the camera there will be the chaos that we all live with. The images on social media are not a true reflection of the piles of washing waiting to be done, the nappies needing to be changed, the toys to be tidied up and the dishwasher to be stacked – yet again. All this is ‘out of shot’. It can be a standard we set ourselves against, whether we consciously realise this or not. That parent-guilt sits on our shoulders and refuses to budge.
Add to this the meeting bookings, email writing, phone call making, school pick up (early), organising, appointment chasing, explanation making, being better at research and investigation than a Detective Inspector, child whispering, child refereeing, and being able to negotiate like a senior UN official that all comes as the add-ons for a parent of a child or young person with SEND, and it’s no wonder we are exhausted!
When someone asks us “How are you?” we answer, “I’m fine” – because we know that we are expected to hold it all together. Never take your eye off the prize, keep juggling, never dropping the balls forever being passed over the top of our heads. Because “special children are born to special parents who will be able to care for them” – if I heard this once when my son was little, I heard it a hundred times. What was I supposed to do and say? If you told the truth, that you are exhausted, often at the end of all you think you can cope with, haven’t had a bath for days, let alone ever go “out” out, can’t sleep because of the constant worry, live on coffee and chocolate, and ‘yes darling, this is very important, it’s called wine’, you’d be worried that Social Services would be making a call.
This came to light most recently in two ways – I was talking to a parent about their draft check and she said “I can’t write anything down, sorry. I’ve had to lock myself in my ensuite loo, it’s the only place I’ll get any peace to talk to you”. This was a moment of great hilarity – but also a snapshot of just how we have to crowbar time into our days.
The other happens so regularly, but is so often spoken in such a way, that the parent feels guilty for saying and showing this. This is heartbreaking, because a) as a business we hear this every day, and b) we have all also felt this on an individual level.
So, what is the second one? This:
“I’m so sorry, I’m exhausted with it all, I just don’t know how much more I can do, how much fight I have left in me.”
We see and hear distraught parents: gender makes no difference, tears flooding faces, often silently. Broken, exhausted, and yet here they still are, trying their hardest, doing their very best. Day after day after day. The most selfless act of just asking that their children and young people have the support they need for the difficulties no one asked for, no one expected, and no one deserves. Education. Not a pay rise, not a new car, not a bigger house, just for their child to be able to go to school. And the words they say to us are ones that we cannot answer with any logical explanation.
“Why?”
“We don’t deserve this; our child doesn’t deserve this.”
“It shouldn’t be this hard.”
This is said and followed by a sigh of resignation. The light at the end of the tunnel appears to have been switched off, the exit closed to only those who have the magic word to enable it to open. The word that LAs continue to hold onto, until a Judge makes them relinquish it.
Self-care talk at this point could be seen to be flippant, unrealistic and coming from ‘the other side’. That ‘it’s alright for you, you’re not here, living my life’. This is true – and we have blogged about this before. As much as you shouldn’t be taking criticism from someone you wouldn’t go to for advice, don’t advise unless you’ve been asked.
Here comes the ‘howevers’.
The saying ‘you can’t pour from an empty cup’ (surely that should be a jug – but I digress!), is very true. Just how we keep our cup full is the million dollar question.
We know that this is not going to be easy, we know personally how hard it can be. Stopping the SEND/EHCP bus to get off, and then get back on again is as hard to contemplate as it is to do.
Sometimes, though this is just what we must do. The bus will still be there, taking its usual route and our ticket will still be valid. Give yourself an opportunity to regroup, to assess where you are and the next steps to take – going around and around on the bus, looking for the next stop to take can make this exceptionally hard to do.
Once you have made the EHC NA application it can be a ‘hurry up, and wait’ situation. We must keep to the deadlines – the LA can do their own thing. We’re like Indiana Jones in those tunnels – if the rocks don’t get us, the unexpected crevasses beneath our feet will, or the knives that are out to get us, that are hidden in the walls. There can feel like there’s no escape.
We have been running on that adrenalin for so long, as both the aforementioned SEND parent and now up against bureaucracy and individuals who really DGAF about us, or it would seem, our children.
Keeping on with keeping on is something we know we must do; but we must also pace ourselves.
This isn’t about ‘taking some time out for a nice hot bath, filled with rose petals, lighting a scented candle, and ‘finding inner peace’ – chance of five minutes peace would be good – hence the phone call whilst locked in the loo!
This is about looking for where and when getting off that bus will do you some good, and not make things harder in the future.
You’ve had a Refusal to Assess. What was the reason? If you have a lack of evidence, you can appeal, and push on through, or stop, look at where you are. Get that evidence, and reapply with a stronger case. Do you feel ready to take on the next step, or would this time be better spent empowering yourself with more knowledge of the process and having the best hand of cards to play?
Once at Refusal to Issue, you are so close, you can almost touch the EHCP, only to have it ripped away and locked in a box. At this point we would recommend you keep pushing for the key to open the box. This is not the time to stop (sorry).
You receive a draft EHCP: that longed for moment, the Holy Grail, or is it? It may be less than the Holy Grail and more like a Poisoned Chalice – full of unenforceable twaddle. BUT – you HAVE an EHCP. This is an achievement to celebrate. Taking the EHCP away will be exceptionally hard – and you have the right of appeal. An appeal (for once in your favour, if there are rumblings of it no longer being required) that will take the best part of 2 years to come to a conclusion.
Now is your time.
You will see and hear us say ‘appeal’ – because that is the solution for a poor EHCP. The only solution.
This is where parents often say that they just cannot face any more. Who can blame them?
Not us. We have been there, and we have the scars to prove it. Parents feel that they must keep going, keep fighting whilst running on empty.
Staying on that bus and going headlong into the appeal process whilst you are ‘in the zone’ may be for you.
However:
This is where you can get off that bus, and take some time. Opt to take what you have, and see how it goes. Your child will have more than before – and even if this is not even half as much as it should be, you have an EHCP and you can rectify this at Annual Review. You get this opportunity every year. This EHCP will be with your child until they are 25 (as long as they are still engaging and benefiting from the provision and not at Uni).
Taking a six month (you can call an AR early) or yearly sabbatical may make the world of difference to you – and gives your child time to get used to whatever support is being provided. It also gives you time to evidence that the additional support you stated initially, is indeed required. This may just be acknowledged at Annual Review without an appeal.
If you still need to appeal, you will have had time to:
Have some time.
Time to step back and reassess the hows, the whys and the musts.
Be empowered with more knowledge – we called our business Empowering Families for a reason. Knowledge is powerful, being an empowered parent gives you the strength to step once more unto the breach.
Taking some time off to give yourself a break, is a worthwhile investment, and is often exactly what you need.
This isn’t ‘time off’ being a parent, we’re not AWOL, we are regrouping, consolidating before picking up and heading back into the fight.
Our blogs, YouTube, Webinars and our free two weekly “drop in” events will give you lots of opportunities to be informed and Empowered. Our Facebook community is the very best group of SEND families to be found – never judgemental, and always supportive.
Come and dip your toes in whenever you need a friendly word of support.
Look too at the support available for respite care and any financial support you may be entitled to:
We can and will always be here to help you. Helping you when you’re on and off that bus. As they say, ‘it’s as much about the journey as the destination’. My darling dad was right, and I may have struggled to do as he advised, but being compassionate to ourselves is as important as the care we give to others. We can but only give it our very best shot, we have nothing to lose and everything to gain.
So, if you feel that you just cannot do any more, for now, don’t judge yourself or allow anyone else to. Take some time, and tell them ‘Sarah’s dad told me to’.
Empowering Families of Children with SEND – Always Stronger Together.
It is often the small steps, not the giant leaps, that bring about the most lasting change’. Queen Elizabeth II
Success is not final; failure is not fatal: it is the courage to continue that counts – Winston Churchill
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us – E M Forster
wellbeing
