13 May 2013

Ichthyosis Awareness Month: My Dad's story ~ "It was never easy being the father of a girl with special needs."

I have been moved by every submission for the Ichthyosis Awareness Month project, but my Dad's moved me most - moved me to tears in fact. My Dad has written of the difficulties he had with parenting me. It saddened me to read that I had a hard time affectionately bonding with him. I don't remember that.

My earliest memories of time spent with my Dad are his Saturday morning storytelling (Tippy the Elf, Marmaduke and Joe with their lorry), moulding cheeses out of playdough, spending time in his shed building toys out of wood, and that day I was home from school sick and I needed to help him move the washing machine with a crow bar (I was not designed to be a handyman!). Dad has passed on his creativity to me, and taught me long division. We spent hours listening to great records - The Beatles, Fleetwood Mac, Simon and Garfunkle, Dire Straits, The Kinks, Manfred Man - Dad helped shape my music tastes. He helped me appreciate cheese and cider. He's made me do the dirty jobs - picking up dog poo and chopping up offal for the dogs. And he constantly reminds me to increase my superannuation contributions. Here's my Dad's story.

"I will never forget the day Carly was born. She was early but presented difficulties for many hours when she tried to get out feet first! I was in the room when she announced herself to the world and to the medical staff who had never seen the likes. Within an hour our local dermatologist was on the scene and made the correct diagnosis and re-assured us both that the condition would clear before too long.

This same man proceeded to administer strong cortisone creams without considering the dangers. It was only when we dumped him and engaged the best specialist treatment that the life-long condition was confirmed.

It was never easy being the father of a girl with special needs. Her mother did all of the mothering and Carly would scream if I attempted to hold her. She was a slippery creature with red skin and patches scale. Her scalp was particularly bad and we knew she must have been in pain and discomfort. She wore tiny mittens during the night to prevent scratching.

At an early stage I accepted that our lives would change forever. No outdoor activities, sport or swimming but plenty of trips to doctors and hospitals chasing the answers.

Being a tidy person, I found myself having to re-adjust as skin debris became part of my life.

I would wake up each morning feeling depressed and I believe my work suffered.

Eventually Carly accepted me and I was able to hold her.

I remember taking her to school the day she started and I worried all the time she was there.

She made it through Primary school and the next challenge was High school. Surprisingly it went quite well and, towards the end, Carly had the confidence to start a job at K Mart.

Even today I worry about her and how she’s coping but I can’t do much to help any more. She knows what to do and gets through life quite well."

If you are suffering from depression or anxiety and need to talk to someone, contact

Lifeline - phone 13 11 14

Beyond Blue - phone 1300 22 4636

Kids Helpline - phone 1800 55 1800

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.




  1. Carly, what a loving man you were lucky enough to choose for a dad. Wonderful post.

  2. Oh, Carly. There is so much written between thosed cherished lines. I've said it before but it's always worth repeating, "There's nothing in the world like a good daddy." Wallow in his love and worry for you, Carly. You'll never regret it.

  3. It must have been hard. Being a parent myself I cannot even begin to imagine. What champion parents you have Carly. :)

  4. The hardest and most rewarding job in the world is being a parent. The quote by Elizabeth Stone sums it up "Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body.".

    Having special needs children is so much harder AND MORE REWARDING. As a parent you blame yourself. You go through all the things you have done that could possibly have made this happen. Regardless of whether or not it is even possible that you were at fault. You dream of this perfect world for your child. You want the absolute best for them. It breaks your heart when their life doesn't go exactly according to plan and worry. You worry ALL THE TIME.

    You sound like you have a fantastic dad there. He sounds like he went through a lot of the same struggles my husband did when our second child was in the process of being diagnosed with Aspergers...and he is the best dad in the world.


  5. Oh dads. They are the best. The idea of him waiting for you to accept him made my chest all tight.

  6. Bloody hell. I've started to cry on the bus after reading this.

  7. You do have a fantastic Dad. Some Dads have found the stress of a special needs child too much and have moved on. Your Dad has been a rock!

    Much love to your Dad!

  8. Wonderful story.... in each and everyone of us there is some sort of 'special need' some find it hard to deal with and others take it in their stride.... Your Dad is beautiful and Honest... Carly we have very different issues in our house - our son grew up knowing he was adopted and black - we are white..... what I did find that people either just stare or stare and make very snide comments and the odd brave one or two would actually question me as to the origins of my son!! You are amazing Carly I love reading your posts and the work on awareness is awesome... Keep It Up x x

  9. Thank you Mr Findlay for you honest emotion. Thanks you for sharing with us Carly. DC x

  10. Thanks for sharing your Dad's perspective Carly. He sounds like a lovely and patient man.

  11. Thanks for sharing this moving story. Fairy wishes and butterfly kisses to you both

  12. Oh, bless you Roger! So brave to tell such a raw story.
    Carly is a tribute to you, every day.
    You say you can't do much to help her anymore, but you help her everyday, cos you are a tops Dad! Good for you!


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