Eight weeks ago today I received a phone call with news that would devastate most parents, the news that my son has cerebral palsy. But there was a group of people that I told who, like me, did not see this phone call as the worst one I could ever receive. They, like me, saw it as a chink of light shining through a door with frosted glass. A chink of light shining through onto Jacob.
The people (other than members of my family) who shared the moment of diagnosis with me were the parents on the SWANUK (a charity that supports families who have children without a diagnosis) Facebook support group. Over the past year I have relied upon the SWAN mums and dads for support and for advice. I’ve shared my highs and lows with them, they have helped me celebrate the tiny steps forward Jacob has made and they have helped me with understanding and wisdom when things have been tough. They are amazing. If you’re reading this, this means YOU! You are amazing.
It felt weird, to be honest. Very, very strange to suddenly be the one posting that we had received a diagnosis. It’s something many of us both long for and dread at the same time. It meant that my family had our “answer”, although we will never probably know what caused Jacob’s brain damage. The SWAN parents stepped forward with just the right mixture of concern and happiness for us. What struck me though was the fact that so many of them thought that this would immediately mean we got better access to support when I was a bit sceptical that this would be the case. This post, is a tribute to those SWAN parents and the fact that they were right, and that that this means that lacking a diagnosis can negatively impact upon the help you receive.
Of course, it shouldn’t be that they were right and it is truly awful that they were right. Support should be needs led and Jacob’s needs have not changed now that he has a label, BUT what has happened is that his needs and difficulties are easier for others to understand and to explain and therefore what can be done to help seems more apparent. That frosted glass got the tiniest bit less fuzzy looking.
Before his diagnosis, Jacob was on the verge of being discharged by a particular therapy team; now he is a “priority” because his diagnosis means it is known that there can be severe problems. Hey, he had severe problems before but no one wanted to know!
Before his diagnosis, Jacob was being seen infrequently by one therapy team who really had few suggestions of how to best help him. Now, he is a priority as his diagnosis means that he will need a lot of help to overcome his difficulties.
Before his diagnosis our family and Jacob were given very little state support, now he is entitled to a high amount of support because it is easier for someone to categorise his difficulties on a scoring chart.
The chink of light shining on Jacob means they can now see the help he needs, they can see how difficult it is for both him and for our family. Nothing has changed, except he is suddenly more visible. They no longer see him through the frosted glass.
This should NOT be the case, and I have little doubt that any professional involved with caring for children with disabilities would disagree. And yet our experience suggests that it is the case, and parents whose children do not have a diagnosis are dealing with this inequality of access to support every day.
It has only been with the passing of the last eight weeks that I’ve realised how, suddenly, good things are happening to us. Letters arrive with decisions that nearly make me faint because I can’t believe we are suddenly entitled to more help and support. It is great, for us, but I feel a kind of guilt because I know there are loads of other parents and families and children, just as deserving and just as in need of these things, some of whom are marginalised and excluded from them because of a lack of a label.
When I talk to them online, if I share our good news, I feel like I’m inadvertently rubbing it in and making them feel bad. No one has made me feel this way, I’ve just suddenly become concious that things have changed for us because of the diagnosis and this feels wrong. It’s a great shame because the one thing that I haven’t found is better after diagnosis is another support group. I haven’t found another natural place to belong and even though I’ve met some fantastic new people, the SWANUK families are so kind, open and welcoming that they’re going to be hard to top.
And so, for all my lovely friends, sitting behind the frosted glass with their beautiful children, you deserved to be seen by everyone. You might be undiagnosed, but you shouldn’t be invisible or even indistinct.
If this post has touched you in any tiny way, I hope you will please consider voting for SWANUK in finals of the National Lottery Awards. If SWANUK win, it will help them to support more families who may be isolated and struggling, their needs invisible because their child doesn’t have a label. Voting takes seconds, please click here:
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