A ROOM FULL OF PUPPIES

Dear Jack

You weighed only 826 grams at birth and were monitored in hospital for several months before being discharged with tubes and an oxygen tank. . At one point in hospital your body blew up like a football.  We were so distraught.

It is a long car ride from your home and back to the hospital where you were born. Where you fitted in the palm of a man’s hand. Where you looked like a little bird which had fallen out of a nest. Where the alarms used to constantly raise an alert over your oxygen levels. Where you had tubes sticking out of you for months, where you screamed upon your early birth – at 29 weeks in utero with the development of a 26 week old foetus. Yes you have come a long way since then Jack………you are a miracle child….

You made it into the daily papers…..You were that delicate, that special and so many people were involved with your survival.

Your mother sat tirelessly by your side next to your special crib, all day, every day as you just managed to grow in your artificial womb.

Many prayed for your survival – family, friends ,medical staff plus people in other countries.. And one day you were discharged with oxygen bottles supporting your breathing. Your mum and I took you to a nearby shopping centre several times, along with your oxygen bottles at the bottom of your pram. Many stared….little did they know what you had already been through.

 You are particular about food but better than you were which was frankly frightening –when you used to projectile vomit bottled milk and spit out most food, perhaps first sucking out a drop of goodness.

During your time as a very premature baby in hospital, the medical experts warned you might end up blind or with sight problems from so much oxygen, that your lungs might continue to be very weak and that you shouldn’t mix with too many other children because of infection risks. You were told that you might have to go to kindergarten with oxygen bottles.

But thankfully prayers were answered and none of this happened. However round the time you turned 2 years you were diagnosed as autistic. Your mother had had vague suspicions as your eye contact was low, you liked lining things up and you fixated on certain objects. Your first word was ‘ball’.

Remarkably early, at about the time of diagnosis, you recognised the shape of things. When handed a savoury biscuit you would notice the shape and say ‘triangle’.

You also screamed for hours with night terrors, didn’t give much eye contact, tiptoed a lot and dropped food wherever you stood. You were restless and hard to contain, and when happy ran around the room whooping . Your mother calls it doing your ‘Eees”.

You also spoke of rhombuses a year later, aged 3, and when I took you to the park you identified the play equipment by their shapes, even using the word ‘ellipse’. We are sometimes dazzled by your brightness.

Your great grandma who had had a severe stroke and was confined to a chair in a nursing home saw a solution in books. She ordered many children’s books for you. She was keen for you to escape into the world of books as she had been doing – often reading a novel a day. She ordered books for you with fervour, sometimes accidentally buying the same book sets twice. And you enjoyed   looking at books from early on.

You loved ceiling fans before you were even diagnosed. They seemed to interest you far more than human faces – except that of your mum. We sometimes joked that we would have to wear caps with whirring fans on our heads so that you would look at us.

You can manipulate any knob, button or trigger in a flash. You see the spaces and gaps we don’t see. A couple of years ago you fed a toy car into the flap and down our ducted vacuum system. You have put assorted small toys and food in our vases, you liked the hole in our plaster wall.

You were scared of the sea. Your grandpa and I took you there when you were about 18 months old with your mum and you didn’t seem to mind then, but when you were about 2.5 years you would see the sea and scream. You seemed so terrified we had to lift you off the sand and take you home. We didn’t know if the sea was too big for you, if you thought there were sharks in there, if you didn’t like being in an unfamiliar place or didn’t like the texture of the sand. You didn’t have the communication tools to explain.

When you were about 3, I took you to our local swimming pool, but one look through the glass and you said: “Home. Car”……..and so I had to relent – you were so afraid.

From early on you were able to say ‘cuddles’ and when you were afraid of the beach or the sea or whatever it was that terrified you, you were able to ask for ‘cuddles’. Even now you cuddle your teachers when you feel the urge. You are not a cold fish but you often don’t look at faces or sometimes not for very long.

Your great grandma survived her stroke for 21 years. She was remarkable in so many ways. Apart from ordering books for you, when we said that you didn’t usually look people in the eye or at their faces – she said so what – it is over -rated .

Although I am your grandma, you have always felt more comfortable calling me grandpa. It is your default position. Is it because of the TV series “Grandpa in My Pocket”?

At around 4 years, you started to go out with me regularly. You loved it and would sit behind your front door on a chair, loyally waiting for up to two hours. And you have always found sitting still very difficult.

You have a wonderful imagination which is apparently uncommon in autistic children. You can make up games of treasure hunts, pirates, submarines or dolphins. It all becomes real for you.

When I took you out you said very little and I always worried you might run away –not intentionally but through distraction. You would see a rotunda at a park, set up for someone’s birthday party and would go over and try and take a cake. You would pick up another child’s scooter in a park – others ownership doesn’t seem to mean anything to you. But you like lining up your own toys, according to theme, and don’t want anyone to mess them up.

Singing “Old MacDonald” seemed to calm and distract you during our outings.

Your hero was Mickey Mouse and at only a few months old you loved Mickey’s theme song. You loved the way Mickey called up solutions by saying “Oh Toodle” which showed the key to various problems. In fact “Oh Toodle” was one of your earliest expressions.