Written for Firefly Friends We took Isla to an Educational Psychologist to try and get a better picture of where she is at. She has made so much progress in recent times. In particular her verbal language and comprehension have improved but I suspected large gaps remain. I hoped to get some ideas on how to tackle herContinue reading “Reality check with the Educational Psychologist”
Written For Firefly Friends I am a parent who identifies more with the term “special needs” than the more inclusive “disability or disease”. Special seems like the perfect word to sum Isla up. As long as its not used in a derogatory way I have no problem with it. Personally I have always associated “disability” withContinue reading “Special Needs is okay by me”
Written for Firefly Friends In this modern world it is relatively normal for people to share a lot about their lives on the internet. Writing and sharing about our journey raising a child with special needs is no different. I have always enjoyed writing. It wasn’t until our daughter was diagnosed with a rare syndrome and autismContinue reading “The Unexpected Joy of Writing”
Written for Firefly Friends Blog https://www.fireflyfriends.com/us/blog/what-to-do-after-getting-a-diagnosis/ I regularly try to think back before we had our 9 year old daughter Isla, and try to recall how I viewed children and adults with disabilities. I think I avoided them to be honest. I think they made me feel uncomfortable as I didn’t know how to relate toContinue reading “What to do after getting a diagnosis”
Our third and final part of the “Meet our Kids” series. We hope you have enjoyed seeing our beautiful children who live with 2q23.1 MDS/MAND and reading what their parents love about them. Meet our Kids – Part 3
7 years ago we were given the life changing news that Isla had a rare chromosome disorder. I remember taking the phone call from the Paeditrician on a sunny Friday afternoon. I remember writing down a bunch of numbers and letters on a piece of paper and only taking in some of what he wasContinue reading “A support group – a lifeline to the newly diagnosed parent”
Part 2 of our “Meet our Kids” series. Parents around the world share what they love about their unique children living with 2q23.1 MDS/MAND.
Our children living with 2q23.1 MDS/MAND are pretty amazing!!! Part 1 of our “Meet our Kids” series where parents share what they love about their unique children.
Isla was born after a normal pregnancy and is the 3rd child in our family. She progressed normally reaching all her milestones normally. We sought help early as she wasn’t babbling or talking. Firstly she was referred to ENT and had a tongue tie release and adenoidectomy in October 2010 and grommets inserted. When the surgeon toldContinue reading “A diagnosis and a little background”