An important start to this blogging adventure, is introducing the family. So, my partner (Natalie) and myself (Adam) live with our two children Jack (12) and Lily (8). Its been over 10 years since Jack first got his Autism diagnosis. At the time we didn’t fully understand what that meant. But it was the start of a roller coaster ride that I could never had imagined.
We have been told he will lead a completely normal life, and he will never be able to live independently, and just about everything in between over the years.
Jack has a list of diagnosis that seems to grow every year. It currently includes ASD and ADHD. Both Sensory Modulation Disorder and Sensory Processing Disorder. Generalised Anxiety Disorder, Learning Disabilty and Sleep Disturbance. Global Development Delay and Echolalia. We are currently waiting on tests for something called Fragile X syndrome.
Lily has an Autism diagnosis, which we only got within the last year, along with a diagnosis of Chromosome micro deletion. Natalie has also since been diagnosed with the micro deletion. Lily also has diagnosis for Learning Disabilty and Sleep Disturbance.
What life is like
We have had massive behavioural problems with Jack, which became more dangerous as he got bigger. He is 12 years old, the last time he was measured. He was just at 6 foot, and weighed in at 83 kilos.
Thankfully after a really bad 2019, which threw up many difficult challenges. Jack being at a new school after being excluded from his previous school. The passing away of Natalie’s sister. Which hit the whole family hard. The year finished on a more positive note, with everything more settled.
Jack is settled into a specialist school for autism, and the change in him has been dramatic. There are still bumps in the road, but he is doing so well now.
Things are a bit more difficult with Lily. She is currently in a mainstream school, and is finding it very difficult. Her school are working with us, but as anyone who’s ever been in our position knows. Getting an EHCP and a placement in the SEN school your child needs is no easy task. But we will carry on fighting to get every thing Jack and Lily need. That’s our job, and the most important job in the world. That’s all for now regarding me introducing the family, you’ll find out much more as we go along this blogging journey.