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


  1. hello mama jax... you are the first port of call of the LAB showcase - what an honour! and thank you for submitting a piece.
    you certainly got your gp to take notice of you - good on you! mummy's are always right in my opinion - and, shh as i whisper, i'm a gp... but even as a gp going to a fellow gp (and friend) i was cast into doubt... oh, she's just a bit behind, she'll walk, let'e leave her for a few more months... as it turns out, those months haven't made a difference because there is nothing that we can do for eilidh but the damage was done to my confidence - my mummy radar was thrown out of kilter.
    the moral of the story? always always always trust your mummy instincts and tantrum when you need to!

  2. ps... i can't believe the comments that were put into the red book - unbelievable!

  3. Also found you through love all blogs! You really made me smile ! No offence to ever hopeful mummy - I am sure not all ~GPs are evil! - but I think mine just thought I was a neurotic fuss pot We're well known there now - and not ina good way! :D Well done for getting them to listen to you eventually!

    And how mean were those comments! Hope you haven't got a complex about it, you big headed, shorty!

  4. Haha I didn't- but I do know lol!! Luckily I have good friends who helped me see the funny side!

  5. Also found you on LAB. You sound like the sort of mum I'd like to have a drink with, we certainly share the same approach to the medical professionals. I look forward to reading more