Johnelmo today is your 28th birthday, happy birthday you gorgeous boy. My how time flies.
Twenty eight years ago I was in hospital with crippling stomach pains brought on, I thought, by eating a whole family size apple pie all to myself. I was convinced it was just wind, fortunately the midwife and your dad were a little more up to speed with the difference between wind and labour pains. You made your grand entrance at three minutes to midnight and it was love at first sight. Your dad and I were completely besotted, so much so that the doctor had to intervene as we wrestled with eachother for turns in cuddling you. I think he was a bit concerned when your dad said that as a rugby player he knew how to catch balls, rarely if ever dropped them and that babies were very similar in shape!
Your first twelve months threw many challenges your way and you never ceased to amaze us with your resilience. We were so proud of the way you coped with the many visits to hospital and the horrible intrusive tests you had to endure. The worst for me as your mum was the lumbar puncture when you were only 4 months old, the doctor looked about 18 and his hands were shaking so much I nearly took the needle off him. I couldn’t bear to hear your screams and my heart broke into tiny fragments. I was bundled out of the room by two burly nurses, only to fight my way back in to you. We didn’t know it then but a lumbar puncture would the least of your worries, you were to face a lot worse than that in the following two years..
Your first birthday was marked with a big party at home with grandparents, aunties, uncles, friends, lots of other babies and small children plus their parents. Well strictly speaking their mothers, most of the dads were playing rugby but would be coming on afterwards. We had vast quantities of party food which resulted in lots of hyperactive little friends, frazzled Grandparents and sloshed mothers. I had made sure that there was enough wine to get us all through the day, I think I found that tip in my ‘How To Be The Perfect Mother’ book although I couldn’t swear to it.
We had bought you a big Postman Pat cake, you had already proved to be a big fan of confectionary and you loved it. I was just glad that someone in the room had a bigger nose than me. (Have you seen Postman Pats nose readers? its huge! Even more alarming is that all the children in Greendale have the same nose, so what does that tell you about Pat eh! Its not just letters he’s been putting through Mrs Goggins’ letterbox……………. anyway I digress.)
You my bonny boy were having a fine old time, loving the presents and all the balloons. Presents and balloons would be a theme that would run throughout your next 28 years. Your little friends were just as happy and while the grandparents ate the vol au vent’s and the mummies drank more wine, no one noticed that the dads hadn’t turned up. They were still at the rugby club downing some dutch courage before attending what to them must have been the party from hell. Eventually it was time to light the candles on your cake, we all stood around and sang happy birthday while you screamed blue murder. That set all the little ones off again and before we knew it everyone’s children were howling like banshees. We sang louder, you screamed louder and the mummies reached for the wine. You hated that song for years and I still have no idea why, maybe it triggered a memory of your first party.
After about fifteen ear splitting minutes everyone had calmed down, two granddads were dozing in their chairs. Each was still wearing the dreadful party hats that your nana had made from old egg boxes and tinfoil; insisting that they wore them. Your granddad had apologised when he arrived at the door with his hat already on. He said his life wouldn’t be worth living if he didn’t wear it!
When I did a head count I found several of your little friends had gone missing, as I searched I heard a strange noise coming from the kitchen. I found that your nana and your great aunty Dot had helped themselves to an unopened bottle of wine, feeling somewhat refreshed they were singing a medley of World War two songs while attempting to wash up. I feared their voices would shatter my crystal. Your little friends, who up to that point had been unaccounted for, were sat on the floor soaking wet but having a wonderful time. Your nana and aunty dot were waving their soapy hands as they sang, slopping washing up bubbles all over the children, who in turn squealed in delight.
I found you playing happily under the dining table, you were eating the remains of some cocktail sausages that had been half squashed into the carpet. Who knew then, that sausages would play such a big part in your life. Being the cheeky boy that you are you squished a little sausage into my eye as I tried to coax you out from under the table, but you wouldn’t come and join the others so I crawled under and sat playing with you. You had found your safe place, away from everybody and you were quite happy playing by yourself, you pushed me gently away. You were already showing signs of autism but it would be a long time before I realised.
Sometime later when all the children had returned to their respectful mummies knees and the remaining elders of the family had dozed off, there was a disturbance outside. Loud gruff voices and manly giggles could only mean one thing, the dads were back, and in a party mood at last. They burst through the door, all black eyes and cauliflower ears each carrying enough booze to sink a ship.
Before I could stop them they all started singing Happy Birthday to you, very loudly. You, still under the table screamed and by the time I got to you your little hands were firmly clasped over your ears, your eyes wild with terror. The other children who had been snuggled on their mummy’s laps screamed in fright. Your senses were being overloaded but I didn’t know it then and I was confused as to why the song and the surrounding noises bothered you so much. I tried to make you join in by jiggling you up and down and then handing you to one of the dads who sang and danced around with you in his arms. All of the other children were by now delighted to join in, so there was lots of high pitch squealing and singing. Your nana and aunty Dot who had woken up when the dads arrived added their glass shattering voices to the din.
It was too much for you and you became inconsolable until eventually your dad took you off upstairs and out of the way of everything. Gradually the party people left and the house returned to normal. Or did it? To you John this was not your kind of normal, the noise, the crowds and the constant array of peoples faces so close to yours. Your first party had ended up being a nightmare for you, you had tried so hard but eventually the Happy Birthday Song had tipped you over the edge. I wonder if it was the tune or the words. We sang it again on your 2nd birthday but the flying birthday cake soon made us stop! In an attempt to shut us up you grabbed the board with the cake on and threw it. Your dad was right, he was a good catcher of rugby balls and of birthday cakes as it happens!
It took you until you were 18 before you could tolerate the Happy Birthday song, nowadays you are cool with it as long as you have one finger in your ear and a present under your arm.
These days John, just like the queen you have two birthdays. Your official one is always celebrated on 16th February wherever you are, either at home with us or at Nelsons Croft. The one thing for sure is that it is a birthday of a very different kind. This year as it falls on a Tuesday you are celebrating at Nelsons Croft. Your wonderful support staff always spoil you and you get a cake,presents and cards. More importantly you get exactly the kind of birthday you can cope with.There is always a party for your friends in the house to enjoy but you can just dip in and out as you see fit,usually only for second and third helpings of party food.
When you come home on Friday you will have another birthday celebration. You have already told me that you want your cake, balloons and presents on the Saturday and at three o’clock precisely. So all the special people in your life are invited to drop in and join in the bear hugs, cake and Christmas carols.
John, you have taught me many things about life in your 28 years, none more so than we are all different and as such should be respected for our differences not ridiculed or bullied. Through you I have learnt that what is pleasurable to one person may be painful to another and that we mustn’t try to make every one follow the same path or live by the same rules. You have shown me that with Autism there are no rules and when you have met one person with autism, you have done just that, met one person with autism. You are individual and unique, autism does not define who you are.
Johnelmo I love you more than life itself, I have had the most ridiculous fun with you over the past 28 years. I am looking forward to a special gooey cheek lick and a million bear hugs on Friday. Only 3 more sleeps!