| Getting the news that your child has a disability |
 |
 |
 |
| Written by Avril |
| Sunday, 20 May 2012 |
|
Your world is never the same after you receive this news. Funny thing is Stephen is now 14 and I heard those words when he was just a few months old and I can remember it like it was yesterday. I can see the look in the doctor’s eyes and I can smell his after-shave. How news is delivered can have an affect many years later.
It is not an easy job for the doctors to have to meet families and give difficult news. Over the years, we have met many wonderful doctors/therapists/nurses etc who have given us practical information and communicated in a positive way. I would like to let you know that here in Ireland we now have national best practice guidelines for informing families of their child’s disability. Please see http://informingfamilies.ie/
There are many groups behind this initiative, but one of the key leaders is a wonderful lady called Katherine O’Leary who is a parent of two children with disabilities. They have produced a detailed set of guiding principles and recommendations, based on extensive research. I had the pleasure of hearing Katherine speak at our local university (she was doing a guest lecture to medical students) recently on this subject. She spoke about the importance of trust and solid information. She shared positive stories from families of receiving very difficult news but delivered to them is a very good way. Life does go on after you receive the news that your child has a disability. You still have a wonderful child who you love and who loves you. And yes there are challenges, but plenty of joys too. Surround yourself with positive people, limit those that bring negativity. Keep smiling (somedays through gritted teeth) and laughing, mind yourself, take one day at a time and enjoy the journey of life! Best wishes always,
|
|
|
|
Recent Blog Posts
|
|
I was talking to a friend earlier this week that had just been to visit a doctor with her little boy. The news she got from the doctor was not good. Her words brought me back to the day the consultant came to my husband and I to tell us that our son Stephen had a disability. Like with my friend this week, a very negative picture is painted ‘your child is handicapped, do not expect too much, he will be limited in what he can learn, may never walk or talk’ and lots of other lovely words.
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.
Inspiration, courage, support, kindness, relationships, positivity, hope, persistence – these are just some of the words ringing in my head after being part of the 
We all hear lots of nightmare stories about the HSE, but I want to share a good experience with you! Stephen, our 14 year old with autism/rare chromosomal disorder had a bad fall before Christmas. He does not have the...
My outrage and anger continues this week with the announcement by our government in their annual budget to cut the respite care grant for carers by 20%. As a carer of my son Stephen who has autism, I cannot accept...
Why is there no joined up thinking in our government policy when it comes to disability services? There have been countless reports, most recently 
Parenting is a tricky subject at the best of times, with constant ups and downs. The toddler and teenage years seem to be particular highlights for testing of parenting skills! Stephen (who has a rare chromosomal disorder and autism spectrum...