Thursday, 29 December 2011

How to get a diagnosis

I knew there was something different about my son from when he was about 6 months old. He didn't cry, smile, babble or move. It's ironic because the medical profession, who worried me sick when Bobby was a baby with scares of jaundice, too tall, not gaining enough weight, were completely panic free when there actually was something the matter.

Every new parent is given THE RED BOOK. This book is to be brought to every appointment and weigh in, filled in regularly and kept in a fire proof, damp proof, lockable safe chained to the wall and guarded by laser beams. It's that important. No new parent, however brave, would dare forget to take THE RED BOOK to an appointment with any health professional.

One of the pages in THE RED BOOK charts the growth of baby. It is marked as a percentage, or 'centiles' and there are lines between which the 'normal' baby should fall. By the time Peter was 2 his height and weight were well under 'normal' on the 7th and 9th centile respectively, and his enormous head was off the scale. As Bobby had often bordered the 'normal' line I was expecting some kind of reaction to this, however the doctor who saw Peter wrote in his report that this was nothing to worry about as "Mother was short with a big head." Humph.

When Peter was 4, a different doctor asked if Peter was showing any signs of toilet training or awareness of 'movements'. I told the doctor that Peter, who had very little speech, would sometimes indicate that he had soiled his nappy by saying "Stinky bum" or, in Peter speak, "Gik gik m-uh." This was translated by the doctor in his report as, "When Peter has soiled his nappy he will ask his mother to change him by saying 'Kinky Mum'." I ask you. It's a wonder I wasn't put straight on some kind of register.

Any parent who has a child with 'additional needs' (I think that is the latest Politically Correct term...) will know that it is not the moment the doctors give the diagnosis that is the hard part, it is getting the doctors to listen to you in the first place. I eventually got a diagnostic appointment for Peter by changing his routine (guaranteed to make him scream blue murder), sitting in the GP's office and refusing to leave until I had an appointment. By the time Peter had trashed the place, I had an appointment for the following week. Peter was diagnosed with hypotonia and autism, at which point the medical profession and support groups could not do enough for me.

To those parents who are going through this, I would say that tantrums in the over 18s work. Keep throwing them and people will listen. Unorthodox advice, but it works. To those who work with these children I would say be patient with us parents; there's a reason we're a nightmare breed.

Today: Embrace the difference
I call Peter my Little Weirdo. He is proud of his title. I tell him all the time that ordinary people grow up to stack shelves or work in offices; it's the extraordinary people who change the world. I'm expecting great things from my Little Weirdo. Watch out world!

Mama Jax

Sunday, 4 December 2011

How to make the most of Santa

It's that time of year again when excited little faces begin to look eagerly to the sky and count down the sleeps 'til Santa. It's also the easiest time of year to keep your small ones in check. If you are having trouble disciplining your child, may I suggest that now is the best time to crank things up a notch.

Lots of children, when they are small, are frightened of Santa. This is a healthy fear which should be encouraged for as long they believe. Santa is not a jolly fat man who brings goodies to all and sundry. Santa plays it fair. Good children get presents, naughty children don't.

I start threatening my kids with Santa from about August. Phyllis firmly believes that I have Santa on speed dial:

"Hello, is that Santa? I have Phyllis here, she'd like a quick word with you. She doesn't think it's fair that she has to put away her toys. Oh no, wait, she's changed her mind."

I have a friend who rings the kids in early November, as Santa, just to check up on them and make sure they are behaving. The Brightest Star in the Sky is Santa's special fairy, who checks in on them every so often, and the little security sensors in the corners of many public places are really Santa-cam. These are just to start you off. One of my friends was inspired enough to tell her kids that I knew their names because I worked for Naughty List Intelligence. Oh, if only that were a real job! We parents must stick together, and anything we can use that makes our lives easier is a Good Thing.

By the time December comes round, my small folk are so terrified that they will have nothing in their stockings that they are paragons of saintly virtue, leaving me free to eat chocolate and drink mulled wine in peace. So Santa, much as I curse you for making me do your Christmas shopping, I have to say you are alright really.

Today: My Christmas wish list

Dear Santa,

I have been a good girl this year. Please may I have:

1. An extra pair of hands

2. These shoes:

3. Johnny Depp

I humbly thank thee Santa, and promise faithfully that if you can deliver me these things I will be very naughty with them, so you won't have to buy me a present next year.

Mama Jax

Friday, 2 December 2011

How to give your kids ambitions

What do you want to be when you grow up? It's a question we often ask small children. I don't really know why we do it- if you are anything like me you still don't know the answer to that question, or when indeed the 'growing up' will happen.

When Bobby was 3 she wanted to be Prime Minister. She could see how much I struggled with parking, especially in multi storey car parks, so decided that, to make me happy, when she grew up she would be in charge of the country and flatten all 'squiggly wiggly' car parks.

From the ages of 5-12, after a brief spell of wanting to be a Jedi, she wanted to be a spy for the government. We endured 7 years of having traps set as we entered doorways, having listening devises set up through walls and having to decipher codes, before she eventually went off the idea.

She then went through a brief spell of wanting to be a doctor, although not liking blood, hospitals or medicine was a huge drawback.

Peter has always wanted to be an actor, however after his triumph as 'Understudy Lord 4' he has had a rethink as he doesn't think he could cope with the paparazzi. (Who knew 'Understudy Lord 4' would turn out to be such a popular character portrayal?) He has since wanted to be an animator as he can indulge his creativity but still retain a degree of anonymity. His animated series 'The Annoying Slug' gives a weird and wonderful glimpse into the autistic mind, particularly the episode where the Annoying Slug escapes from the Daleks in a model of a VW Camper Van.

The best answer to the question, "What do you want to be when you grow up?" came from one of my pupils, who answered,
"When I grow up I want to be Santa because I am jolly, I have a very loud 'Ho Ho Ho' and I have a belly that wobbles like a bowlful of jelly."
Me: "It's very seasonal work though. What are you going to do for the rest of the year?"
Child: "Well, there are the reindeer to feed, the elves to look after, toys to make..."
Me: "Yes but that still won't take you a whole year.
Child (thinks): "I'll be Santa for the winter, autumn and spring. In the summer I'll work at Butlins as a wrestler."

Can you imagine the excitement of kids on Christmas Eve when the catch sight of Santa, and then the slight, doubtful pause before they ask, "Wait a minute... Didn't I see you at Butlins?"

Today: Lead by example
My friend asked her daughter what she wanted to be when she grew up. Her daughter replied,
"When I grow up I want to be a mummy so I can shout at my kids and go to Tescos."
My friend was mortified. "Is that all I do Amy?"
Amy, after a 'thinking pause', "Um..Pretty much."

Mama Jax

Thursday, 1 December 2011

How to put your daughter (or son) on the stage Mrs Worthington: Part 2

Last year, Peter auditioned for the school production of 'Twelfth Night'. Although I prepared him for the fact that he probably wouldn't get a part as he was one of the youngest auditioning and was up against 6th formers, Peter threw caution to the wind and decided to audition for Orsino, the main part.

His audition was like theatre for the deaf. Peter, being very literal, had interpreted his audition piece in his own sweet, autistic way and had added an action for every line for clarity. His audition ran thus:

"If music (conduct orchestra) be the food (pretend to eat) of love (hug chest) play on (conduct orchestra); give me extheth (excess- Peter has a slight lisp) of it (gather in excessive love)"

Alas for Orsino; Peter was cast as the understudy of Lord 4, a non-speaking part made up by the school to give the voluminous cast something to do.

Peter had one performance to do, with the other understudies, where he had to provide background reaction in Orsino's court. The thing with Peter though, as I have already mentioned, is that he is very literal, so when the director told Peter and Understudy Lords 1, 2 and 3 to react that is exactly what Peter did, in a melodramatic style which would make a silent movie star proud.

By the time the performance came round, the director was at his wits end trying to tone
down Peter's reactions, and as a last resort had assigned two year 9 girls to stand one on either side of him and be 'Peter Monitors'. Every so often, Peter would attempt to (over)react and those members of the audience in the know would see the two girls gently but firmly hold his arms down by his sides.

Peter is playing a goblin in panto this year. Whilst the other goblins are 'Panto' scary, Peter creeps across the stage like Gollum from 'Lord of the Rings.' But this is fine; panto is one stage genre where overacting comes into its own.

Today: Is this the most awkward panto moment ever?
I took the kids to the panto one year when they were small and Buttons chose 4 children (not mine) to go on the stage.
Buttons: So, small boy, does mummy have any 'Uncles' who come round to visit when daddy isn't there? (Knowing sniggers from the adults in the audience)
Small Boy: Yes. Uncle Adrian. He comes round all the time when daddy goes to work.
Daddy did not look pleased...

Mama Jax