Hello everyone, I am sorry I haven’t written for so long. Sometimes life gets in the way of the things we really want/need to do and work is the biggest culprit. This is not a usual post either. I’ll begin by saying that Jamie has been fine – the usual cycle of a day of 3 – 4 full on seizures, then about 10 days – 2 weeks of our beautiful Jamie back where he enjoys life and copes with everything brilliantly. Then we bewgin the downward spiral to the next lot of seizures. Jamie obviously feels worse and worse, he may have headaches (I’ve seen him rubbing his head), but his behaviour becomes more and more erratic intil the next bout of seizures blow his mind clear. It is an awful cycle, we treasure the good days and work through the bad, but feel so bad for him when things are hard.
But generally, he has been more settled, relaxed and happy – well it’s summer time and he loves the sun and being able to sit outside and shred grass and leaves – its his idea of heaven 🙂
Most of this post is going to be taken up with a letter I wrote. This letter was addressed to staff at Jamie’s school. I wrote it sometime after he had suffered awful abuse at the hands of a team of support workers who shoulkd have known better than to pick on a vulnerable and totally defenceless boy. It still breaks my heart that I couldn’t protect my boy, he did not deserve this and the damage it has done to him long term doesn’t bear thinking about. I hope it never happens again, Andy and I do all we can to protect Jamie, the guilt will never leave us.
Here is the letter:
Abuse: A family perspective: An open letter written to support staff at Jamie’s residential school.
Well, it was Monday again – a perfectly normal Monday, I was busy working – a mix of working from home and going out for meetings. I was busy, absorbed in Monday things that needed doing. The animals were fed, dog walked, house tidied (sort of). Husband was off to work and then I started. I worked through lunch, forgot the time – and was just about to think about my rumbling tummy and what I could give it to stop the noises when the phone rang. I nearly didn’t answer, but something made me think this wasn’t a cold call, or someone wanting me to buy something that I didn’t want or need.
So I picked the phone up. I still think about that call, those feelings come flooding back. The shock and pain that I felt when I was told that my child had been exposed to verbal and physical abuse. That he had suffered because of the actions of some people whose job was to care for him and support him. But more than that, these were people who I trusted with my beloved child, who I loved so much and thought about every day. They had made his fragile hold on a world that made little sense to him even more precarious. He can’t tell us how he feels, can’t tell us if he is hurting, or sad, or has been hurt by someone. He is vulnerable and defenceless and we, all of us who know him, had let him down.
But above the hurt and pain, the tears and sadness, there was an overriding feeling of anger – deep, deep anger that made me feel quite violent. Now I am so not a violent person, I would always turn the other cheek. But not now – my son had been violated, he was hurting and someone had done that to him. I felt so, so angry, almost out of control. I’m glad that I wasn’t, but I still feel angry with the people who treated my son the way they did, will those feelings ever leave me, I doubt it.
The first few minutes after the phone call were awful. I felt desperate, a physical pain wrapping around my heart. I felt as if my heart was breaking. I was in shock. I rang my husband in flood of tears, what could he say, he was in shock too. We spent days feeling just dreadful. Sometimes I was able to blank out the feelings and get on with everyday life. But sometimes they would come flooding in unchecked, as vivid as if it was happening all over again. I dreamt of my boy, being spoken to in language he didn’t understand but knew was bad, being ignored when he was dirty, treated as if he was a nuisance. During the day my imagination was running riot, all the problems we had encountered recently – the bruises, the seizures, the way he looked so poorly but we didn’t know why, were they all because of this? He is so sensitive and life is difficult enough for him – why did this have to happen?
As the days went on, I was able to think a bit more clearly through the pain. After that Monday phone call, I just wanted to rush to my son and take him away from that place. I wanted to bring him home and keep him safe, protected and with me always. But he would hate that – to change his routine without preparation or warning would be so hard for him to cope with, I couldn’t do that. And lets face it, if I could cope with him at home 24/7 do you think I would not have him here with me? So we tried to carry on as normal, visiting for his special day just as we always did. Taking him to the familiar places that he loves and where he feels safe. We tried not to show him how desperate we felt, we tried to reassure him that he was safe and that he was loved and we would care for him and protect him. But we knew in our hearts that we couldn’t, there was no more confidence that the people we had entrusted our precious son to would love him and treat him as he deserved to be treated.
My son can’t talk, oh he understands loads, but he can’t talk. During the time he was abused he would ‘speak’ to my husband, his step-dad who he loves and trusts beyond all others, when he got in the car to go out. It was in his own language, we couldn’t understand what he was saying, but he was definitely saying something. He doesn’t do it now, he didn’t really do it before – occasionally but not often. During ‘that’ time he did it every week, just when we were in the car and we had first picked him up. Looking back, I just wish I could understand him, I wish he could tell us. I kick myself for not seeing the signs in him, for not understanding what was different about him, for being complacent and never letting it cross my mind that some of the people who looked after him were doing the exact opposite. They were making his life a misery, I didn’t see it. I will never forgive myself.
The thing is, things have changed now. When we would pick up our son from his house after the allegations, I would look at the support workers on duty, and wonder, did you know this? Could you have stopped it? Could you have protected my boy and kept him safe? Many of you are my friends. I have always appreciated what has been done for my son, always recognised what a hard job it is – I know because I have also done it. It is a difficult, stressful job but also the most rewarding and fulfilling job you can possibly imagine. No you don’t get the recognition you deserve, but there is just no excuse for the behaviour of your colleagues. And I did lose my confidence in the organisation, why had they allowed this to happen? The trouble is, who do you ever trust, and how do you know? Would anywhere else be any better, or would I expose him to even more abuse and danger.
Looking back on the past months I can see that I had taken for granted that others would feel the same about my son as I do, that I was lulled into a false sense that he would be safe and happy and have the best care at his school and home. My biggest worry about him growing up was that something like this would happen – you hear such devastating stories of people in institutions from the past. Of people being chained to the toilet because they are incontinent. Well my son is incontinent – doubly. He can’t help it, it is not something he wants or has any control over. You can’t ‘teach him a lesson’ about soiling himself. There is absolutely nothing he can do about it. If there was he would be able to use the toilet because he is not stupid, far from it, he understands more than we will ever know. My feeling when I heard what had happened to him was, how dare they, how dare these people judge my child. They don’t know him, have never bothered to see him as a person. I know it is probably an over-reaction, but I am sure you can understand – wouldn’t you do anything for your own children. And my son is so vulnerable and defenceless.
I still feel devastated by the events that took place. I still have little confidence in ever feeling ‘right’ about my son being in a place like this. What will happen when I am older and can’t keep an eye on him? When I am dead, who will fight his corner then? Because when the chips are down, can you honestly say that you will protect him, preserve his dignity and keep him safe from harm of any kind to the best of your ability? I hope you answer yes to these questions. And I thank goodness that some of you have the courage to speak up and stand alone to protect the vulnerable young people in your care. I won’t forget what you did; my son could very well have died if someone had not spoken out for him. I feel so sorry this has happened, it is hard to move on – I wonder how my son can make any sense of the cruelty of some people, I can’t!
Until next time