I have spent many hours trying to figure out how to start this blog and why I even wanted to start a blog, when it started out as a book! I finally realised that, what we dealt with everyday and how we dealt with these things couldn't really fit into a book yet because how can you write a book about parenting a complex needs kiddo if you haven't finished being a parent to begin with?
Answer: you can't!
So I decided to start from the beginning, not the beginning in as much as when we first noticed anything was different but the beginning from when we first thought we were pregnant. I know, why? Well, its because as a parent to someone with complex needs, you spend a lot (and I mean A LOT) of time blaming yourself and what YOU did or didn't do to cause this to happen to your child or children.
I felt that I was to blame for R's issues because I had used jacuzzis whilst in the first few weeks before I knew I was pregnant, because I had a few drinks during the pregnancy and because he was born early due to MY body failing him.
All sounds ridiculous right? Yup, even writing it, it sounds silly! :-) But there isn't anything right or wrong about what we blame ourselves for as parents or even logical to be honest. It wasn't my fault I didn't know I was pregnant at only 2 weeks gestation, it wasn't my fault I ended up with pre eclampsia at 33 weeks gestation causing me to be induced at 35 weeks. The drinking - well I had 3 glasses of wine over the whole time, so not exactly a large amount and to be honest most of that was before I even knew I was pregnant!
He came out screaming, this tiny and skinny baby. when I first saw him I fell in love with another male, this one just hours old. This one was definitely more lazy than the first man I fell in love with, my husband, because he didn't want to poop and need up to neonatal for 2 weeks before he came home.
He seemed to progress fine if a little slowly, then at 10 months old cam a horror I wish no one ever has to experience EVER!!! My little boy had a fit - I didn't know that at the time as it didn't look how I had been told fit would look like or how I imagined it to be. After a week back in hospital, we were told it had been a Febrile Convulsion - yup sounds weird right?
Well its temperature related seizures or fits. These continued every 3-6 months until he was almost 3 years old. By this time we knew he was behind on speech and noticed other little things different between him and his peers. The consultants then stated he had A-typical Febrile Convulsions - meaning there weren't normal - so they put him on Sodium volporate, an epilepsy drug. For the first time since that first fit my little boy was fit free! As he grew the dose changed to cover break through fits, these due to his height and weight changes.
Now he's 7 years old with no fits, he's still on sodium volporate as his Febrile Convulsions turned into Temperature Related Epilepsy (this due to scars on his white matter, it is not typical for children with febrile convulsions!).
He has finally been diagnosed with several issues which cause him and us to struggle each and every day, which this blog is based on, but he is still a happy, full of beans, loving little boy. All he wants is to have fun, laugh and hug. His diagnoses are: ASD (Autistic Spectrum Disorder), SPD (Sensory Processing Disorder), SCD (Social Communication Disorder), partial 3rd nerve palsy, no 3D vision, Epilepsy, and Chromosome 14q deletion (although we are all unsure how this will affect R in the future).
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