Over the years I have grown to understand that you do not always know best and you are not always right. I have learned to not hang off your every word as the absolute truth, but to take what you say, and then do my own research.
My mistrust for professionals has emerged due to experience. But...As a parent of a child with complex medical needs I rely on you to support me in raising the healthiest and happiest child I can. I reply on you to help my child live their best life.
Help me to trust you more, by valuing my knowledge of my child and using me as an ally and a resource.
Tips for Professionals whose patients are Children with Special Needs.
1)In the beginning, when our children are being diagnosed:
Tell us the truth BUT stick to the facts.
Give us examples of varying degrees of outcomes (best and worst case scenarios) BUT don't predict what the outcome for our child will be because you do not know for certain and in doing so you might take away the small amount of hope that is keeping us going.
You might have diagnosed this condition many times before, but for the parents sat in front of you this is probably their first time.
Signpost us to websites with further information.
Tell us about places or groups we can join to talk to other parents.
Send us away with all the big important words we've never heard of written down so we can learn about our child's diagnosis in our own time.
Treat us with empathy. Our World as we know it has just Ended!
2) As out children grow and we are managing their medication and condition on a daily basis.
Treat us as an Ally.
Treat us as an EXPERT. We are EXPERTs in everything to do with our children.
Talk to us as you would a colleague, but in terms we will understand, discuss what our children need, as we most probably have valuable insights that can help you diagnose and prescribe.
DO NOT treat us as someone who does not know our own child!
I know that I am not alone in feeling a lack of respect from some professionals. Please be the difference, please join the many professionals that are there doing their best and being amazing and setting parents up to succeed!
Thank you for reading.
Michelle
Are you a professional that has any other advice for colleagues on how to diagnose and then work with parents of children with special needs?
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