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A Different Journey: The journey of a mum of a child with Additional Needs
The next story in our Journey to Parenthood series comes from Michelle, a mum of a child with additional needs. Her daughter got diagnosed with a rare genetic mutation of the Med13L gene. From the initial elation of hearing she was pregnant to the news following her 12 week scan, she shares her very moving and different journey to motherhood with us. It’s a story that will inspire you to see the many obstacles in life in a different light.
Throughout our series, we are exploring various paths to parenthood and the journey of parenthood itself. Showing different perspectives of how there is never a straight-forward route and going through tough times, especially as a Mum, can be completely overwhelming.
Rather than turn my story into a novel (which it could well be!), I’ll let you know where we are now.
Although she finally received a genetic diagnosis 3 years ago (a rare genetic mutation of the Med13L gene), we still don’t really know how her brain is wired, or how it will be in years to come – but we do know that the dream of her being able to live independently is pretty unrealistic.
She doesn’t approach life or the world around her in the same way that the rest of us do. And because she’s locked in a very silent world, trying to make sense of her world can be really, really tough. It’s not just that she can’t talk, or wears nappies, or that she has autism, or that she has a significant learning disability but the sensory input she gets from visual, auditory, tactile, vestibular (where her body is in space), proprioceptive (what her body feels from the world around her), is different to what we feel, and take for granted. Her brain doesn’t process sensory input in the same way that ours does. It affects how she interacts with people, approaches the environment – in fact everything that she can hear, see, touch, feel.
Up until around 2 years ago, I was pretty much her full-time mum, carer and therapist. My husband was the one going out to work every day so my whole world revolved around her (and her brother) as I felt it was purely my responsibility to care for her, teach her how to grow and develop. She went to a mainstream school with full-time 1-1 assistance – but even with that, I was on top of the staff all the time, checking how she was, what she was doing, telling them to do this/not to do that etc. Yep, I was one of ‘those mums’!
I graduated from the course in September 2018, set up my business Embrace Social Media, then was approached by first client in the October. It’s been pretty non-stop since then and is going from strength to strength as I’m also now learning the complicated art of Facebook and Instagram Advertising Strategy to add to my list of services.
If you can relate to this story and would like to connect with other parents in your situation, our Dribble Facebook Community is full of advice, support, chat, events and much more to meet other Scottish families. We also try to take the online offline too by arranging some Dribble events, including our monthly Breastfeeding Meet-up.
Remember you’re not alone.
Click here to join us for a bit of natter!
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