Starry Starry Night

In recent years one of the biggest influences in John’s life was my late partner Peter who came in to John’s life when he was about thirteen or fourteen, John that is not Peter.

Up until the day they met, Peter knew nothing about autism or the profound effects it can have on a family unit. I agonised over the decision to introduce them and wondered if I was making a huge mistake by trying to include a new father figure into John’s world. After all John already had a devoted dad who loved him and whom John adored. I would never forgive myself if I caused John any further anxiety at a time when he was already struggling trying to make sense of his life.

I need not have worried; Peter was incredibly intuitive and seemed to ‘get’ John from the start. As for John it was love at first sight. John doesn’t fall in love easily but when he does it can be man, woman, chicken or goat; whatever floats his boat.

John called him Peehee and followed him everywhere. Peter had endless patience and soon John only needed his Chickee pictures and his beloved Peehee and his world was complete. Just when John thought it couldn’t get any better Peter played his ace, and gave John two ‘brothers’ who he was and still is, completely potty about.

And so it was that Peter, James and Adam joined team John.

The boys were fantastic with him and like their dad they too knew instinctively how Johns life works. He would kidnap Adam to play on the playstation and give James massive bear hugs until James gave in and agreed to take him for a drive in his van….for bear hugs read headlocks….they are all the same to John.

One day not long after they had all been introduced, John’s school phoned up for ‘A chat’. I thought ‘OMG what’s he been up to now?’ The last time they phoned it was because during break time, John had formulated a plan to help his very small classmate escape. John was the tallest in the class and so, standing on a chair, could reach the door handles situated at the top of the class room door. John let the boy out of the class, then shut the door quietly and carried on helping himself to the extra juice and biscuits. Houdini was eventually found on the sports field with another group of children.

It wouldn’t have been so bad but it seems this wasn’t the first time John had aided and abetted his little friend. It had been happening for a while and the teacher had had to hide in the store room to find out how Houdini was escaping.

I laughed so much the teacher threatened to give me detention!

Anyway as it turned out this kid had been hitting John, and John being a good lad, would never hit back. Instead he decided the best way to stop the agro was to get rid of the problem all together, so it was bye bye Houdini.

Right back to this phone call….Apparently John’s class were having a lesson about ‘Family’ and after having put ‘Mum & Dad on the board John started shouting Peehee so the classroom ssistant took him to the toilet. John didn’t need to go, couldn’t understand why he was taken but as it was a chance to skive he went along with it. This happened twice more, each time John was taken back to class he shouted Peehee and he was escorted off to the toilets again. ‘This isn’t much of a game’ thought John after the third time and so managed to tell the teacher by way of various signs, words and gestures that he also had a Peehee. The teacher, eager to move on with the lesson decided the best thing to do would be to phone me and find out if Peehee was a hamster or rabbit maybe and therefore should be put under the heading of Pets and not Family. She was obviously getting a bit frazzled, what with all the to-ing and fro-ing to the toilet and all.

I explained that Peehee was Peter, that we were an item, and although we didn’t live together at that time, John adored him and the feeling was mutual. Therefore Peehee claimed his rightful place on the board, under Family and not Pets.

The teacher sounded relieved, sighing heavily she hung up.

A few minutes later the phone rang again. I picked it up,  it was the teacher who by now was clearly not amused. ‘John has been shouting Bugger, it’s distracting the children and we are STILL on Family’ she said tightly. ‘Ah…erm…are you sure he said Bugger?’ I asked her tentatively, as she was clearly on the edge. ‘He doesn’t have a massive vocabulary so why do you think he was saying that word?’ And I waited for a proverbial rap on the knuckles with a ruler.

‘Well it sounds like ‘bugger’ and I thought you might know. I am keen to get on Mrs Ellsmoor but Johns out bursts are disturbing my lesson’

‘I don’t think he is saying Bugger because he wouldn’t have heard the word at home’ I lied unconvincingly, in the hope of not being given extra homework.

The teacher asked me to wait and she returned with John who was shouting ‘no wee, no wee’ thinking she was starting to play the boring toilet game again.

‘I am going to put John on the phone and ask him to tell you the word’ she said firmly and handed John the phone hissing ‘tell Mum the word John’

‘Hoola Hoops’ obliged John followed by screams of laughter, followed by further hissing ‘Just tell mum the word you want to put on the board’

‘Kites! Bridges! Cake!’ yelled John who was loving this new game, so much more fun than the toilet one.

‘John’ I said trying not to laugh…Did you say ‘Bugger’

‘Yes! Bugher’ said John followed by ‘Jaym! Adm! Bughers’.
I realised that John was saying he wanted James and Adam under ‘Family’ on the board because they were his ‘Brothers.’ I had no idea that John knew what a brother was. It was all in the pronunciation although I have to admit to the untrained ear it did sound like ‘Bugger’

John and I were saved by the bell and the teacher finally finished her lesson.

That incident made me realise that John really did understand everything that was said so we made a concerted effort to minimise our profanity.

Sadly for James, Adam, John and me our bubble was to burst, our beloved Peehee became very poorly. John understood that we had to be gentle with him and his headlocks were definitely less forceful. John took to climbing into bed with us on Sunday mornings and believing that the best thing to ease the side effects of chemotherapy was to lick toes, happily slobbered over Peter’s feet in a bid to ease his suffering. Judging by Peters face it didn’t quite do the trick but he never once told John to stop.

There was an up side to Peter’s illness, in the final few months he needed a special chair to help him sit comfortably. One of those remote control electric thingy ones…you know the ones that can lay you flat, sit you upright and raise you up to a standing position all at the touch of a button. Well John thought all his Christmases had come at once. He had Peter at all different angles, shouting ‘up’ when he was pressing it to go down and ‘down’ when he was making it go up. The best bit was when Peter took his socks off so that John could lick his feet at the same time.This all added to the hilarity.

When John thought it was time to swap places he would patiently pull Peter off the chair and jump onto it himself shrieking ‘UP UP now Peehee please, yes, ok!’ Peter always obliged, even in his darkest hours.

This was John’s idea of heaven, which brings me to the question…how do you explain ‘death’ to an autistic person like John?

As Peters time drew nearer, I would tell John that Peter was very poorly and would soon be going to a special hospital, but we wouldn’t be able to visit and We wouldn’t be seeing him again. I asked him if he understood. ‘Ospity, Peehee’ confirmed John nodding his head. If we drove past the local hospital John would point and say ‘Ospity mum, Peehee’ I would say yes but that Peter would be in a very different kind of hospital up in the stars where there were no visitors.

I think he was getting the painful picture.

Neither Peter nor I could think of a way to actually tell him when the end finally came. Then Peter with his unerring sense of humour came up with this great plan. I was to say to John ‘I have some good news and some bad news’…’the bad news is that your Peehee has finally died, but the good news is that you can have the chair!!’

Ok so it needed more work!!

When Peter finally passed away in 2011, John’s dad explained to him that he had gone to the ‘Special ospity in the stars’, and that ‘his Peehee loved him very very much’ Apparently John opened his arms as wide as possible and said ‘JohnElmo loves Peehee this much’

John understood everything we had told him and now on a bright starry starry night he always looks up into the sky where he knows his Peehee is watching over him…and shouts at the top of his voice Peehee! Ospity Now!! OK!’

The chair by the way went to a new home where hopefully it will give someone else as much comfort and pleasure as it did to Peter and John.

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16 thoughts on “Starry Starry Night

  1. Ju, whilst I knew much of that, I stilled learned so much more. I now have tears streaming down my face, as I remember you telling me the chair story not long afterwards. Hope you are ok after telling that story. I’m not !!! Xx

  2. Could not hold the tears back on this occasion. 😦 yet one of my favourite posts because its simply beautiful….. It shows that whilst John’s vocabulary is limited, his heart and feelings know no bounds. Peter will be looking down p**sing himself laughing and thinking, I’m so very proud of Julie and John.

    • Thanks Barry I am so glad you enjoy reading it. I enjoy Baz too, you must keep blogging you write so eloquently and you let us see into the depths of your soul. Xx

      • Dear Julie
        This is for me the most revealing and informative posting .I had not realised just how much John understands -in fact most things it seems-but also how intuitive he is. You have the gift of getting important facts ‘across’ to others in a non-instructive way.
        I loved it -funny ,unbearably sad and a brilliant portrayal of the power of love.

    • Thank you Lorraine my intention was to highlight that John has a good level of understanding, and to give Peter some credit for John being the lovely boy that he is. Xxxx

    • Lovely reading,it made me laugh and also cry,and I related to it very much as I have an adopted Downs Syndrome son who fortunately keeps in good health at the moment,when my husband died I thought Edmond would never get over his death,but I discovered he understood better than I thought,and at times I felt he helped me through it ,he looks at the sky at night and talks to the moon saying that is where his dad is.
      I am sure your Blog will help people have a better understanding of Autism,you are great at writing wish I could do so well..
      Lots of luck and love to you and John.

      Annette

      • You too have a story to tell Annette, our children have so much to teach us providing we are open to their methods. Edmund sounds a wonderful son and a great comfort to you in your moments of sadness. I wish for you both an easy journey as you move forward.
        I hope my scribblings make you smile. Stay in touch xxx

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