Light through frosted glass

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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D-Day – on getting a diagnosis

Firstly, it’s only fair that I tell you that this is old news. Old news to me at least. Not massively old, say a few weeks at most but not something I learnt about today or yesterday. There is a reason for this delay which will become very obvious as this post goes on.

Our very own D Day arrived on a sunny Friday afternoon, at around 3pm, just as I was doing some final cleaning before my in-laws arrived for a long weekend. The phone rang and I was annoyed as I had to stop what I was doing when I didn’t have enough time as it was. However, insignificant worries such as whether the place would be clean enough for my Mother-in-law (who is lovely just much MUCH better at keeping house than I will ever be) soon went out the window. It was a call from Jacob’s paediatrician. Some 5 weeks previously Jacob had extensive tests done under a general anaesthetic; an MRI brain scan, lumbar puncture (needle into spinal canal to remove spinal fluid), blood and urine taken for testing; all done at the request of his neurologist in an attempt to find a diagnosis. This call was the one we’d been waiting for,  it was the results.

I have to admit Jacob’s paediatrician was very skilled at this point, she told me so quickly what they had found that I didn’t have time to worry or panic about what she was telling me. His brain scan had shown a a definite diagnosis, a conclusive reason for his problems. Jacob had brain damage, in particular he had periventricular leukomalacia (PVL) – damage to the white matter around the ventricles in his brain. If you’re interested you can read more about it on the Scope website here.

She quickly told me that nothing we had done had caused this damage, that it had most likely happened between 20 weeks of pregnancy and when he was born. As a result of this finding, she said, they would now be giving Jacob a diagnosis of cerebral palsy. She explained that this finding was not what they expected as in many ways Jacob didn’t immediately stand out as a child who has cerebral palsy and he didn’t have many of the typical history of a child with PVL either not being low birth weight or premature. She pointed me in the direction of where to find detailed and reliable information on the internet (knows me too well!) and said we’d discuss it further at his next appointment.

It was after this phone call that my in-laws arrived, which was probably a good thing as it stopped me going into immediate negative thought free fall and largely because I didn’t have this alone, panic time I think I have dealt with the diagnosis better than I might otherwise have done. Serendipity if you like.

Over the next couple of weeks what I wasn’t expecting was for old upsetting thoughts and feelings to come rushing back. Thoughts and feelings that I thought I had dealt with and moved on from. The feelings of grief for the child and family life we might have had, thoughts of why me/us/Jacob. Negative, pointless and angry thoughts that I hadn’t had in several years. Whilst my husband, very sensibly, felt that this didn’t change anything and we should be grateful that at least it wasn’t a degenerative condition or one that Harry would need to worry about should he want children in his future; my head agreed with all these points but I had felt a cloud had come back over me and I couldn’t yet see through it. I had always had concerns about Jacob’s birth which was long (not unusual), where my waters had broken more than 24 hours before I was finally induced, where Jacob’s head was not engaged until later in labour (q unusual in a first pregnancy), where I had a 10 minute contraction at one point and had to have the syntocinon drug flushed out with saline, when Jacob was born with forceps with the cord around his neck. Very early on when Jacob was a newborn, I was worried that because he has unequal pupils it meant that something had happened to him. The diagnosis almost felt like a justification of my early worries, that I had been right all along in thinking my darkest thoughts about his birth.

It’s for these reasons, that I haven’t written this post until now. I needed head space to think through what I felt, to explain it all and frame what getting a diagnosis for Jacob felt like. Also, to move away from feeling upset and angry towards a more positive attitude that focusses upon dealing with the hand I’ve been played. I still have questions, and I feel we’re now at the beginning of a new journey of finding out and learning. I haven’t entirely reconciled myself to his traumatic birth and the part it might have played in all this, but as yet I’m also unsure if I want to go down the path of opening that particularly tricky can of worms.

Hopefully a diagnosis will be a way of helping Jacob to get more targeted support, may be it will make it easier to define his needs or for others to understand his difficulties. It’s too early to say.

We always wanted a diagnosis for Jacob; tiny bits of us didn’t in case we found out something really devastating, but mostly we wanted to know. Forewarned is forearmed and all of that. We’ve now had our D-day, and do you know what? It is just IS. That’s just Jacob, that’s how he is. I don’t even feel that he should or might have been different, even though maybe somewhere in a parallel universe, shitty horrible luck didn’t happen and his brain didn’t get damaged. Of course, I wonder what our life would be like in his parallel world, what MY life would be like, but who knows? It might have been worse. He is, after all, a gorgeous, beautiful, cuddly, affectionate boy and I am grateful for him every day.

A beautiful boy