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As we celebrate incredible mums across the UK this Mother’s Day, we would like to introduce you to Katie, a parent of neurodivergent children. Katie shares her honest and heartfelt journey with us.
I have three of the most beautiful, kind and caring children you could ever wish to meet and I am insanely proud to be their Mumma. I’m also aware that perspective is important and that my experiences do not speak for all parents of autistic children.
Being a Mummy to my babies was all I’d ever really dreamed of, and thirteen years down the line it still feels that way now (for the most part). However, our journey has had its bumps in the road. It has been tough and I hope to be honest with you about how that can affect our daily lives.
The Road to Diagnosis
My eldest two children have both been diagnosed with autism at Caudwell Children. Fred received his autism assessment when he was seven, and I’d say that the road to his diagnosis was one of the most challenging times in my life.
When Fred was invited to all the milestone appointments with the Health Visitors, I was recalled to every single one – he was never where he was ‘expected’ to be. Although they say you should never compare your children, you naturally do and he was so far behind where Eva had been that I did worry.
Once you start to express your concerns, everyone jumps in with nurturing reassurance, which is so lovely, but it can make you feel like an overthinking, young mum. I used to think- if I hear ONE MORE TIME, that “he’s a boy and they’re just lazy”, or “his big sister is speaking for him”, I’m going to scream.
It wasn’t until Fred’s nursery manager asked to see me about his inability to answer basic yes-or-no questions and his struggle to make eye contact that I finally felt taken seriously. Family continued to reassure us that he would catch up and that it was just a phase.
Challenges in School and Everyday Life
School was, and still is a real struggle for Fred. A mainstream school environment is not designed to accommodate children like mine. The battles both Fred and I have faced are deeply upsetting.
Life as an Autism Mum is actually really challenging and it has taken me a while to be okay with admitting that. I don’t for one second wish my children were different, I wouldn’t change a thing about them. But the expectations placed upon them by others? I would change that in a heartbeat.
Finding Support Through Caudwell Children
The fight for our diagnosis was long. When we first heard about Caudwell Children, we had no idea what a lifeline they would be. Receiving Fred’s diagnosis was emotionally overwhelming — I felt a HUGE relief that I wasn’t just imagining his struggles. But I also felt a deep sadness that it had taken until Fred was almost eight to be recognised by people who knew.
Every Autistic Child is Unique
No two autistic people are the same. This is something I get frustrated with, as my two diagnosed children are perfect example of this. They are complete opposites, chalk and cheese, their needs are so far apart.
Fred needs constant prompting and reminding, he has trouble with dressing, he can’t figure out the ratio of cordial to water for his drinks, he doesn’t have receptors to tell him when he’s hungry- he also now appears to struggle to know when he’s full. Fred struggles with any multi-step instructions, which means I have to break down tasks for him and I try not to overwhelm or complicate things, but in around your daily life as a Mum this can be hard to factor in.
My Biggest Worry
The thing that keeps me awake more than anything is Fred’s vulnerability. As his peers grow older, his developmental differences become more apparent. He struggles to understand what is safe and what isn’t, taking people at their word and trusts people too freely. His soul is so pure, but this opens him up to so much – and I feel like when I’m not there to protect him from potential situations, that can be extremely stressful. As he grows in age, he is becoming more aware and self-conscious of his differences. We’ve always called his autism the reason for his “Rockstar Brain,” but at almost eleven years old, that explanation doesn’t wash as well anymore. I just hope I have filled him with enough self-love to carry him through life, reminding him that there is no such thing as “normal,” no matter how often we’re told otherwise.
A Wish for a More Inclusive World
These beautiful children of mine are such an asset to the world, I just wish they were thriving in environments that made them feel that way too.
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