Mum to three girls, aged 19, 18 and 3. At the moment, I’m caring full time with Elle, my youngest. Elle was born with Arthrogryposis and a Neuromuscular Disorder. Elle is physically unable to walk/stand/crawl and so relies on me for almost everything.
No one prepares you for the challenges of having a child, whether it’s the sleepless nights, the constant worrying that you’re failing, and the endless emotions you go through, and that’s with a neuro- typical child. Having a child with extra care needs is a whole different level of life.
A lot of the struggle in this new and wonderful world of SEND is that not everyone understands. Your family and friends support you as much as they can, but they never really do just get it and no matter how much you try to explain, sometimes you’re met with “she’ll get there!”
I often felt quite alone when Elle was a baby and not because of the absence of family and friends. A professional I confided with, pointed me in the direction of stay and play with Little Hiccups. Anxiety took over and it took me a good few months to finally turn up to an event! Boy, am I glad I did.
I’m now surrounded with an extra family who although aren’t with me daily, understand every tear I shed over a coffee (there has been plenty) or every time I say I’m tired, they understand that it’s not sleep I need. That when I have a big meeting or change in Elle’s care needs, I talk it through with people who just get it and listen, and offer advice because it’s almost certain someone else has been through it too!
And that’s why I’m so excited to volunteer and become part of a much larger and understanding family with Little Hiccups. A community that’s become family. Who wouldn’t want to be part of that.
- Equality and Diversity Course
- Communication Access Training