Love and Special Needs by Josie Dye

It's incredible to think about what you can do to protect your child.  This episode is about four families that came together to start their own school.   They hired a teacher, set up some ground rules and then crossed their fingers and hoped for the best.   So far, it's been the best thing we have ever done.  My child is  immunocompromised and also has a small fear of school.  If it was up to him, he would stay home and connect online, but it's not.  Both his doctors told me to keep him safe while also keeping him interacting with other children.  This was our experiment and honestly I would recommend it to anyone.  

What is it like to be a sibling of a child with special needs?  How do you teach empathy to a kid who consistantly seeks out the laugh from his classmates? Empathy is not somthing that is taught in one class and forgotten about. Empathy is something every parent needs to teach daily.  Today I take a look at my youngest son and some of the sacrifices he has made growing up with a brother who has special needs.    

My guest this week is Liz Trinnear, a TV host known to millions across Canada.  She is gorgeous, confident and talented and yet she has been suffering from a rare skin codition called Epidermolysis bullosa (EB).  Liz talks about growing up with the condition, the diagnosis and finding a cure.   We discuss bullying, oversharing and how she has found confidence through telling her story. 

Living in the NICU with a child who has pneumonia, reflux, heart issues such as bradycardia, and other stresses can feel impossible.  I talk about my experience with my son Cole who has sotos syndrome.  I also interview a baby cuddler who saved me from insanity and we speak to the moms who have  premature babies.   This is an incredibly emotional episode.

In this weeks episode we talk to one family who is on a mission to find a cure for their boy Michael.  He was diagnosed a hereditary spastic paraplegia type 50, otherwise known as SPG50. Children afflicted with this genetic disorder present with a variety of symptoms, including global developmental delay, microcephaly, seizures, malformation of the brain, and hypotonia. What would it take to find a cure for your child's rare disease?  I talk to Terry, Michaels father and we speak about the process for raising money, hiring a team and what this entails.  Would you give up a good chunk of your life, your money, and even your career to find a cure for your child?  What if the cure never comes?   

Today I speak about my son’s experience with Gerd. Reflux almost tore my family apart.  Today I bring on Dr. Jeffrey Phillips to speak about reflux and the medicine needed to combat this horrible time in a babies life.   I also have Laura Heller Bennett who is a mom who also suffered through gerd with an infant.  She eneded up starting her own facebook group called Infant Reflux: Support For Gerdlings.  

I'm a parent who has a child with Sotos Syndrome and I'm finding ways to help him through his anxiety.  In this episode we talk about ADHD, Sotos Syndrome, Sensory Issues, Speech delay, teeth issues and anxiety attacks.  I tell you what has helped and what has not.   

I recorded this first podcast back in 2018 when my first born was only four years old. Back then I was too nervous to post it online.  Today I'm proud of my boy, I'm proud of what my family has accomplished and I feel so grateful to have this outlet.