Updated: Apr 7, 2019
You are setting off on a new voyage with your child and you may feel frightened, lost and alone. I want you to know that you are not alone, that there are many of us that are treading a similar path and we understand how you are feeling.
If you are anything like me, you won’t have a clue what you’ll need to take along with you. So I have made a list of things that I’d love to send you, just in case. Don’t worry, as it is all virtual stuff, it will all shrink to fit neatly into your bag.
The first and most important thing I will send you is a thick skin. I call mine my rhino skin. On a good day it can protect you against the thoughtless and judgemental but do remember that on a bad day it can slip, leaving you exposed. Glue it on if you can or surround yourself with people that will hoist it back up onto your body if you need them to. (see ‘velcro’ below). If you can make space in your bag for a glazed expression, do. This is the ability to walk through a crowd making absolutely no eye-contact with anybody, whilst clearly being present. It may make you look a little infirm but believe me, this will protect you from the looks/stares/sympathetic whimperings of those whose intervention you could well do without. This expression will improve over time - practise practise practise.
As far as friends go, I send you both velcro and vegetable oil in equal measure. Some will be happy to stick by you and I can guarantee that you will find new friends who step out of the shadows to help and support you. Velcro these ones to you. Others may be less useful. Pour oil on the ground to ease them away and wish them well - you won’t have time for flaky friends. They will try to blame you for ‘changing’. Remember that it is not you, it is them.
Next, I send you the gift of clairvoyance. From the moment your child receives a diagnosis you will be expected by those around you to know not only everything about it but also what the future will look like for your child. Most of these people will have no intention of doing their own research and will see it as your job to inform them. Pack this somewhere near the top. (Also, see ‘vegetable oil’ above)
A basic guide to laws surrounding Special Educational Needs and Disability will be handy. Grab the SEN Code of Practice and a jargon buster/dictionary of nonsense local authority terminology and you should be all set. If your sleep is affected, reading any and all of the above can act as a useful sedative.
You’ll need a decent satnav as appointments will invariably be far from home and some may also expect both parents to be present, necessitating judicious use of the rhino skin when, funnily enough, parent number two cannot take a fourth Wednesday in a row off work, despite the desire and subsequent disapproval of the practitioners. You will get better at standing your ground, I promise.
Crampons will be handy as there will be mountains to climb. Also pack a dose of super-human strength as you will need to carry your children up the slopes with you. When you reach the top of one, and you will, make certain that you look around for long enough to appreciate the view and be proud of yourself for reaching the summit. Dig out your collapsible sun-lounger and bask in the rays. Take a photograph to add to your scrap book of victories and then, when you are ready, set off towards the next mountain.
There will be days when you are absolutely on your knees. I send you a comfy cushion for those days. Stop. Rest. Heal. Swear loudly. Hold your friends close to you and start again another day.
Most importantly of all, I send you faith in yourself. You are the greatest advocate for your child and will remain so until they can advocate for themselves. Believe in yourself. Everything you do will be with love. You will make mistakes, goodness knows I’ve lost count of the number of times I have screwed up, but do please understand how important you are. If and when the responsibility becomes too much, dig your velcro out again and pull your trusted tribe towards you to prop you up. Look after yourself - you matter.
Finally I send you love, from one parent scaling a mountain to another. Find some fellow climbers to laugh with and one day you might be able to hold out your hand to steady someone following on behind you.
Martha Smith Parent Advocate is a supportive blog focusing on the challenges and wins of parenting children with additional needs. Based in Hampshire Martha runs workshops for schools and other education providers in Surrey, London & Hampshire on how to improve empathy between teachers, practitioners and parents.