Angels

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.

 

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Thy Meetings Come

Today I had a twitter exchange with a couple of tweeters I have come to respect for their passion and contribution to Early Years Education. They told me that they were valued by the schools they support and that their provision was good and I have no reason to doubt that from what I have witnessed them discuss.

But the discussion brought back memories of my experience of Early Years Education. The mismatch between what these posters believe they are delivering and what I felt my son received was stark. In short, I felt we received a generic patronising service from the services that purported to deliver essential ‘early intervention’.

8 months after my son was diagnosed with ASD and at 3 and a half yrs of age, (after an extremely tough battled for a statement of SEN), we had weekly SALT, weekly Autism Advisory Service, an EP assessment, and 80% of 1:1 in preschool. I have since learned that this kind of provision is but a dream for many, and yet in what I can only recall as the darkest of days of a true understanding of what ‘support’ actually entailed, I wrote this:

‘Our LA, the Armageddon,
Shallow be thy name
Thy meetings come, nowt will be done
Except CPD on expenses in Devon
Give us this day our daily dread
And forgive us our PECSesses, as we forgive those who laminate against us
Lead us not into visual timetables
And deliver us from unmeasurable targets
For thine is the budget, the power, and you’ll surely
Fail my child again and again.’

To read this back made me cry. It’s not that I didn’t want to be grateful in those early years. It’s that I just couldn’t be. You see, nobody could explain to me one single outcome that resulted from their involvement and I asked, at the first and last ‘Team Around the Child’ Meeting.

The professionals metaphorically held hands, and despite having the question 3 weeks in advance, announced that they had agreed amongst themselves that outcomes were a joint effort. But sadly, no-one could give me even a joint-effort outcome either, at least not a measurable one, or even a vague one I could agree I had witnessed.

The question I put to them is no doubt a question of a ‘nightmare’ parent. But even so, should not the professionals (paid for at quite considerable expense to the tax-payer) be able to answer it?

Not being able to answer this, offered us absolutely no hope for our child’s future, or for the ability of services to meet his needs.