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Saturday 24 Feb 2018
You are here: Home Blog Articles What my journey has taught me so far
What my journey has taught me so far PDF Print E-mail
Written by Avril   
Saturday, 16 June 2012

I was asked recently by a grandmother whose new grandchild was diagnosed with a chromosomal disorder, what advice I could give her and her family. She was asking me because my 14 year old Stephen has a rare chromosomal disorder. This got me thinking….as I look back now on my journey of being a parent of a child with a disability and if I could have talked to myself all those years ago, what would I have said?

Here is what came into my head:

  1. You are doing a great job – you can do it.
  2. Take one day at a time.
  3. Break milestones into mini-milestones, celebrate all achievements.
  4. Everyday find something you are grateful for, some days it will be the blue of the sky or the green of the grass.
  5. Take timeout, take care of yourself – this is a marathon, not a sprint.
  6. Surround yourself with people who give you positive energy and limit contact with those with negative
  7. Connect with others in the same position.
  8. Connect with others who are outside the ‘disability’ world.
  9. Allow yourself sit on the ‘pity pot’ (feeling sorry for yourself) occasionally but don’t forget to get off it ( I sometimes get stuck on it).
  10. Take time with your partner.
  11. Take time with your other children.
  12. Take time with yourself.
  13. Celebrate difference.
  14. Laugh, live and love!
Best wishes as always,

About Me

I’m Avril, married to Robert and I’m Mum to 3 kids, Stephen, Michael and Rachel. Stephen has special needs (he has a rare chromosomal disorder). We can see he has lots in common with children on the autistic spectrum and children with down syndrome. As well being a Mum, I’m an advocate/lobbyist for those with disabilities. I feel strongly about the importance of including Stephen is as many everyday activities and I have created the Off We Go! series of books to help Stephen and kids like him manage with everyday events.