We all have a scale by which we judge the experiences we have had, both good and bad in our lives so far. The best or worst day we ever had, the best or worst date we ever went on, the happiest or saddest moment and so on. This is a story of two of mine that will forever be intertwined.Its another long one so put the kettle on!
I hope that by sharing this with you, it will serve to help others who may be experiencing similar difficulties with family members who live with autism.
By far and away the most difficult decision I have ever had to make was to place John into residential care with Wirral Autistic Society. The worst day of my life so far was 3rd of March 2008, the day he finally moved out of our home and out of my full time care forever. I doubt that anything that happens in however many years that are left in my life will ever come close.
John had been a loving gentle giant for most of his life, but something inexplicable happened when he was sixteen that caused him to be overwhelmed by his anxieties and he was unable to cope with his life as we knew it. Overnight he became tense, anxious, and volatile. Without warning he would lash out at me, push or shove me or throw things. He didn’t do this to anyone else unless they were trying to protect me by getting in between the two of us, then they too would feel the full force of a very troubled John.
And so began a very dark and devastating four years during which my lovely happy boy would be engulfed by the terrors of his autism.
John wasn’t being naughty in the true sense of the word, this was the only way he had of communicating his problems to me. He couldn’t tell me verbally what was troubling him so by hitting me he was saying ‘Mum I really don’t like this….’ Or ‘I am scared of this…’ or ‘Just leave me alone!’
Most teenagers swear and slam doors to let off steam when they are angry, John however couldn’t do this so he tried in his own way, through his behaviour to say ‘Things are so bad mum that I will hit you until you make it stop’. However I didn’t know what it was that was distressing him so I couldn’t make it stop. My heart was breaking for my lovely but troubled boy.
He started refusing to go to school and would be very aggressive while I was washing and dressing him. It would be almost impossible to get him to onto the mini bus each morning and as soon as he came home he would hit me again because I had made him go. I lived every day in fear of his outbursts and in sadness that I couldn’t help him.
John would be very upset after each incident and would sit by me, head on my shoulder with big silent tears rolling down his cheeks. John never ever cries so his heart must have been breaking too. I had no doubts that he loved me and that he hated himself for what he was doing but I knew that he couldn’t stop it either.
I would sit and rub his cheek, something he loves me to do when he is unwell, and he would touch his heart and sign ‘I love you’ and I would say ‘I love you too John, more than anything’.
I would ask him if he knew what he was doing was wrong and he would nod and say ‘Yes’ I would then say ‘You are not going to hit mummy again are you John?’ and again he would say ‘Yes’ because he can’t tell lies and he knew that at some point he would become anxious again and have to hit me. He looked haunted and I felt I was letting him down by not being able to make everything right for him. After all it’s my job as his mum isn’t it?
He seemed to feel a kind of release once he had hit me and this would help to make his mood subside. He also either smashed or threw his most favourite toys and belongings, almost as if he was creating more anxiety for himself to feed his rages.
We asked the school if they had problems but they said that he was fine and loved all the school activities. His teacher mentioned that there had been an incident on the school mini bus with a child becoming anxious and this had frightened John, he was now reluctant to go out with the class. That was the only thing that they could think of which might have troubled him. Eventually it did come to light that a couple of the smaller children had been seen hitting him from time to time, although he would never hit them back. I can only imagine how confused he must have felt at being hit by his classmates, but am so proud that he didn’t retaliate. I will never know if these incidents triggered something off in John.
Over the next two years the school were very supportive, they did everything they could to help John and our family cope with his aggressive behaviour. However nothing worked, John was still very unhappy and his extreme anxiety continued to manifest itself in his outbursts. It was decided that John would leave school a year earlier than planned and transfer as a day client to Wirral Autistic Society. I had put his name down some years earlier. Some children naturally grow out of school and maybe the transition to WAS would help him cope better with life.
For two weeks it seemed to have done the trick, John loved his new life and seemed happy and relaxed, but it was short lived. All the old anxieties came back to haunt him and Johns behaviour grew even more difficult, over the next 12 months he was difficult to control.
He hit out at his dad, his grandparents, his support workers and even Peter who was ill by this time; and always without warning. I was now taking some really big hits, my body was bruised and battered and my nerves were constantly shattered. I had even been knocked out during one outburst, I had stumbled and I hit my head on the radiator. When I came round, dazed and giddy, John was standing by me saying ‘Juice pease mum!’ and patting my shoulder as if to say ‘There there you will be ok’
He became so unpredictable that I never felt safe alone with him. Mentally I was on the edge but did not want to admit defeat.
A lot of the time we still had fun and plenty of laughs but after a particularly dangerous incident in the car when he attacked me whilst I was driving, I knew I could no longer take him anywhere on my own. Our world was shrinking; John only wanted to be at home with me, didn’t want to go to WAS and would do anything to prevent it. Together we were slowly sinking into a dark pit of despair.
A year later things finally came to a head, during one of Johns early morning outburst to try and prevent me from dressing him I ended up with a broken wrist, hand and fingers. I was alone with him and had no way of defending myself. John was in bits, realising I was hurt and also realising he was the cause of it. He sobbed and sobbed saying ‘Mummy boken’ over and over until I thought both our hearts would break. Later in A&E I didn’t want to tell them how it had happened for fear of them judging John, I wept uncontrollably.
I was devastated as I knew that this couldn’t go on, but the alternative was unthinkable. I could never let him go, I loved him and no one would be able to look after him as well as I did, surely.
A week to the day that this latest incident happened, with my arm in a full cast and unable to fend him off, John attacked me again, Peter was at the hospital so I phoned my dad, when he arrived John attacked him too breaking his glasses and cutting his nose. I have never seen my dad look so bewildered and sad. John then pulled all the curtains off the windows, swiped everything off the hall table and threw a vase against the door frame narrowly missing my head. It looked like a bomb had gone off, which in a way was exactly what had had happened. An anxiety riddled bomb.
I finally admitted defeat knowing that John needed more help than I could give him. I would eventually have to make the call to WAS and request that John be put on the list for residential care. I discussed it with his dad, Peter and my parents, all of whom said at first that I shouldn’t do it, for different reasons; and all of them later admitting it was because they couldn’t bear the thought of him not living at home. I understood their concerns and worries for I felt them too.
However I also knew that if I ended up in A&E again, only with worse injuries, the decision could be taken out of my hands and I didn’t want that. I had already been placed on an ‘At Risk’ register by Social Services as my life was deemed in danger from Johns attacks. They tried to pressure me into putting him into care, anywhere, for my own safety but I would not listen.
I was determined that if John was to be cared for it would be with Wirral Autistic Society only and even then only as a last resort.
John was given medication to help calm him down but it didn’t seem to work in the doses prescribed. I didn’t want him on anything higher as he would have been like a zombie and that wasn’t fair to John, he was still a funny lively young man underneath all the anxiety.
Only I could make the final decision and I felt sick at the thought, however for both our sakes I knew I had to do it. A few days later I sat in the garden shaking, crying and staring at the phone until I eventually made the call that would change John’s life for ever. I felt numb for a long time afterwards but knew in my heart it was the right thing to do. John’s dad and Peter were very supportive of my decision; they just wanted the best for John. James and Adam were lovely, not saying much but always ready with a hug when needed, they are and always have been very protective of John and aware of his needs.
We met with the Residential team at WAS and it was all officially agreed. John would live in residential care Monday to Friday, coming home at weekends, one of which he would stay with his dad. In the short term it was agreed that someone from WAS would come out every morning to get John up, dressed and take him to day services. A young man called Kev arrived, immediately he and John clicked and John changed almost overnight. I have no idea what spell Kev weaved but John loved him and above all respected him. There were a few moans now and again from John but Magic Kev was able to distract John before things escalated. They became great friends and Magic Kev slowly and gently restored John’s confidence, eased his anxieties and helped him re discover his love for life.
I wish you could have seen him snuggled up in bed at night, his picture of his ‘Chickees’ and ‘Bridges’ on his pillow and his many moonbeams and mobiles all playing at once under the duvet. Just before he closed his eyes he would say “Kev mommo Mummy?” and I would nod and say “Yes John, Kev tomorrow”. All was then good in his world, he would fall asleep safe in the knowledge that his best friend would soon be back to guide him safely through another day.
Thanks to Magic Kev and the team at WAS we could all once again enjoy our time together while John still lived at home.
Life was wonderful ; so much so that I almost forgot that Johns name was on the residential list. Until that is one day in November 2007 when the phone rang and it was The Director of Residential Services, as he was called then, advising me that a suitable placement had been found for John and he would be able to move into his new home on 3rd march 2008.
‘But that was too soon, he wasn’t anxious anymore so his behaviour was fine, I can’t do it, I can’t. I can’t!’ I blubbed down the phone, until eventually running out of excuses I stopped.
It was all arranged and although I knew it was for the best, I felt as if I had betrayed my gorgeous boy in every way. The sensible me knew that this way Johns future was secure; if anything happened to his dad or I then he was already in a calm and loving environment rather than being taken into care without any preparation, in the meantime we would still have him home at weekends.
Magic Kev took John to visit the new house many times so that John was familiar with the layout, the staff and the other clients. He had tea there several times too and was perfectly happy to wander in and out of all the rooms; generally checking it out and blissfully unaware this was soon to be his new home.
The plan was that he would just go off to day services on the Monday morning with Magic Kev as usual but then instead of coming home he would go with Kev to his new home; Magic Kev would stay with him to settle him in over the next few days until he was sure John was ok.
The weekend before John was to move was horrible. Peter and I couldn’t look at each other for fear of crying. John was in fine fettle doing all his usual activities and probably wondering why he was getting more cake and sweets than normal. He also seemed a bit surprised that I kept kissing him at every opportunity but enjoyed all the extra hugs nonetheless. I lingered over everything on that Sunday, savouring every moment as if it would be our last. Life would never be quite the same again for any of us.
I spent ages with him in the morning rolling on the bed tickling and shrieking like the crazy woman I had become. His dad came to take him out as he always did on a Sunday; he looked traumatised with the stress of it all. All three of us joked with false bonhomie.
Peter was wonderful, understanding my need to do everything for John myself, just this one last time. Once tea was over I tried to put off the evening routine as long as I could as the pain was unbearable. Bath time was wonderfully wet; bubbles everywhere and John sang ‘Who ate all the pies’ at the top of his voice. This was a song his dad had taught him and one of Johns bath time favourites together with ‘The Twelve Days of Christmas’… I Know! It couldn’t be more different, but that’s John all over.
After much chasing and cuddling with Peter, John announced that he wanted ‘toast, juice and bed, please mummy’ so with a heavy heart I did all the usual things that John likes before settling him down. I then lay along side him wanting to feel his warmth and to inhale his lovely smell to sustain me in the three weeks I would not see him. I have never been away from him for that long and being a drama queen I wasn’t sure I would survive. John on the other hand didn’t want me slobbering all over him and pushed me off the bed by nudging me several times with his bum.
I kissed him one last time, told him I loved him and he told me ‘Bridges!’
I closed his door and burst into tears, no longer able to hold back the flood that had threatened all day to burst my banks. I sat on the landing late into the night leaning against his door listening to his breathing as he slept soundly, my heart threatening to cease beating with every hour that past.
I remember very little of the next morning, John and Magic Kev got up to their usual high jinx and then they left. Peter and I stood silently at the end of the drive until the car disappeared out of site before turning and walking back into a very quiet house. I don’t think I spoke for hours.
Adam and James and John’s dad then arrived and loaded up James’s van with everything out of John’s room so that when he arrived at his new home all his stuff, his Computer, TV, Video player, Playstation, CD player, toys, everything even his bed (he would feel better and more secure with all his familiar bed smells around him) would all be in situ and would make his transition easier to bear. I had printed off lots of photographs of all the family and our house plus all his favourite things and I laminated them so that he could keep them. Adam being a ‘techy wiz’ would set up John’s computer in his new home so it would all be perfect when he got back.
WAS provided us with a new bed so that when he came home at weekends he had somewhere to sleep.
When we arrived at the house although I felt sick to my stomach, I was amazed at how lovely and ‘John like’ his room was. The staff had made a fantastic effort to decorate his walls with all the things he loves. He had new clocks everywhere and kites hanging from the ceiling, pictures of him and us where his computer desk would be, in short nothing had been overlooked in an effort to ensure his comfort and well being. I couldn’t help but be impressed and I knew somewhere deep in my heart of hearts that he was going to be ok. As for the rest of us I wasn’t so sure. I for one couldn’t wait to get out of there, as nice as it was.
Outside when all had been done his dad and I hugged tightly, a rare moment of mutual understanding.
When Peter, the boys and I got home the house felt completely empty, I tried to be brave but failed miserably, James hugged me tight until the tears subsided. The two boys were choked with emotion yet were towers of strength to me; I will never forget what they did for John and I that day.
John surprised us all and settled well into his new surroundings. We spoke to the staff every day and they reassured us that all was well, infact he had amazed them all with how quick he had adapted.
Once the three weeks were up there were big celebrations as he came home for his first weekend. He was so excited to see us all, jumping around, clapping and slapping and demanding ‘cake, juice, toast, biscuits’ He looked so well and happy, I couldn’t stop smiling the whole weekend.
The best example I had of how well he settled was after two months when I was visiting the garden site and John was busy with the lawnmowers; a job he loves. The head of the gardens site, Sarah, was telling me how well he was doing and how he knows every mower inside out. Just then John appeared and I shouted at him and waved, excited to see him at work. He hooted, whooped and came running over, I opened my arms to give him a big hug and in true Hollywood style he ran straight past me to Sarah and gave her a huge hug and lots of kisses.
I could have been upset but I wasn’t, because this showed me unequivocally how happy he is, how much he is loved by the staff and how much he loves them back. He now has a much more varied life than I could ever give him, filled with new experiences and challenges. He now has friends he sees every day and his beloved animals to look after.
John proved that he was ready to be more independent, it was me that couldn’t or didn’t want to see it. It was always going to be difficult to come to terms with the fact that I was no longer the best person to look after my child, even under the most difficult of circumstances.
It would be wrong to pretend that John doesn’t get anxious from time to time because he does, that is the nature of autism. The difference is that now he has the expertise of his support staff around him to give him coping strategies for when he is struggling.
There are no words in this wonderful language of ours that even come close to describing the pride I feel in the way John has matured into the fine, confident young man he is today. He possesses a wicked sense of humour and a huge heart. Magic Kev and the fantastic team at Wirral Autistic Society were instrumental in this process; I can not thank them enough or appreciate them more. They gave my family a lifeline when we were overwhelmed with difficulties but most importantly they gave us our son back when we feared we may lose him altogether to the anxieties that threatened to engulf him.
So often we underestimate our children whatever their needs, I was wrong to think I was the only one who could look after him and make him happy. Well done John, my lovely boy, you are a star.
John with Magic Kev his best friend in the whole world.