There is nothing like having a child with SEN to acutely contrast lightness and darkness. I’m no Robbie Williams. I can’t write lyrics and I don’t have much talent for words. I tend to sell this as having a preference for plain English which usually lets me off the hook. But I have been struggling to express something for quite some time and I just don’t think plain English will cut it, so I’m going to challenge myself now and have a go.
In the UK, being a parent of a child with a disability means you are forced on a journey. This is not the journey of acceptance, which though tough, is shortened by the much bigger journey to ensure your child has the services and provision that will enable them to reach somewhere near the level of their potential. The journey is a long one and will change your life. It won’t necessarily make it better, or you a better person, and for many, it will last for the rest of their lives.
During the journey there is incredible despair and desperation. Just surviving it can cost you your savings, your home, your job, your pension, and though I have escaped this one so far, your marriage. You can be caught up in a web of systems that are not compatible with each other and though often created with good intentions had no oversight and no engineer. In addition, there will by mythical provisions you are believed to be accessing because they existed once, in a pilot study, 45 miles away, 5 years ago.
You will be expected to accept these ineffective good intentions and mythical provisions gratefully. Not doing so will put you in receipt of emotive communications that come with the expectation you will display guilt and cease all challenge or face a consequence. Money will move around in your child’s name that you will never see or even know about. You will face the devil.
But there are Angels too.
I often take some time out to go through them in my head, ones I know now and those of the past who have spurred us on. They can touch your life with a helpful piece of information, advice, unexpected praise or simply kindness. Some of them will take great risks themselves to aid you and those on your journey without expectation of pay-back and some will simply retweet or comment on a post that is important to you.
Many of them show you that they are willing to fight so that others behind you see much less of the devil, or so you may see less in the future. They shine a light on your words, listen to and believe your stories of darkness so they may be brighter still. I have seen them. I have met them. I know this to be true.
This week the light has shone particularly brightly for me. I have been lucky enough to have seen a number of Angels at work. Some with little recognition, some with great recognition. I believe that regardless of the darkness or the outcomes of their battles, whilst their work and their passion shine through, there will always be light.