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:
- You are doing a great job – you can do it.
- Take one day at a time.
- Break milestones into mini-milestones, celebrate all achievements.
- Everyday find something you are grateful for, some days it will be the blue of the sky or the green of the grass.
- Take timeout, take care of yourself – this is a marathon, not a sprint.
- Surround yourself with people who give you positive energy and limit contact with those with negative
- Connect with others in the same position.
- Connect with others who are outside the ‘disability’ world.
- 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).
- Take time with your partner.
- Take time with your other children.
- Take time with yourself.
- Celebrate difference.
- Laugh, live and love!
