‘I felt so isolated and lonely and didn’t want anyone else to feel the same way’
A Derry mum has set up a blog on social media about her life with a child who has autism.
In just a couple of weeks, Sarah McGill’s blog ‘Autismmammy’ has been followed by more than a thousand people.
The mum of two said sharing her life has made her realise how many other families in Derry and the surrounding areas are ‘struggling’.
Sarah’s five-year-old daughter Niamh was showing signs of autism from a very young age, however did not receive a formal diagnosis until she was three.
”From she was really small, Niamh wasn’t meeting any of her milestones,” Sarah said. “I took her to all the mother and baby groups and she just wasn’t interacting. There was no eye contact and she was just overwhelmed, crying all the time.”
Sarah said Niamh’s autism was ‘plain to see’ and she shared her concerns with her daughter’s health visitor.
”She referred us to a paediatrician and while the doctor was unable to diagnose Niamh, she believed she did have autism. It took another 18 months before we were seen by the ASD team and Niamh got a formal diagnosis.”
Sarah said that process was ‘gruelling’.
”There is a parent interview where you share everything about your child, from conception to where they are at now, and then they assessed Niamh. “Niamh just cried the whole time. She just didn’t want the company of the people assessing her and didn’t want them in the room. As soon as they left the room she just completely calmed down. It was the whole social aspect that she didn’t like.”
Sarah said she felt very alone after receiving Niamh’s diagnosis while waiting to access further support from professionals.
“I found that I was on my own after diagnosis, no one really understood Niamh. She is non verbal and has repetitive behaviours.
“We have to be religious about our structures and routines, or she would get overwhelmed and confused and it causes her to lash out,” Sarah said.
“I had to learn how to communicate with her through makaton or PECKS. You have to be very quick on your feet to learn everything, otherwise your child is going to regress. It puts a lot of pressure on a parent.”
Sarah said that Niamh has no danger awareness, which means that the family are ‘constantly on high alert. Your mind doesn’t switch off.”
Her daughter is now in primary one at Ardnashee and she ‘loves it’.
“She has the most amazing support network there, her teacher and classroom assistants are just amazing. They have their structure down to a tee, she knows exactly how each day will go and there are no surprises there.”
Sarah, who is on the committee of Circle of Support, said that lockdown has been particularly difficult for her own and other families whose children have additional needs.
“The parent group at CoS really keeps me going, but the Covid pandemic took all that away,” Sarah said. “My mental health took a dip because I was completely overwhelmed. I found myself constantly fighting for Niamh and it left me totally exhausted.”
Sarah’s late aunt, Gina Kerr, had suggested that she set up a blog about her life with Niamh a number of years ago. However, at the time Sarah felt she didn’t have the ‘guts to open my world up like that’.
“During lockdown, I just felt so isolated and lonely I decided I was just going to do it. I didn’t want anyone else to feel the same way I did.
“I thought that if I share my journey people in the same situation as me might take some hope from it and realise they are not on their own.”
Sarah said the feedback so far has been ‘amazing’ and writing down her experience has helped her immensely.
“It has also made me aware of how many families in Derry and the surrounding area that are struggling just like ours, who are trying to get help and support but are having to constantly chase it.”
To follow the blog visit: https://www.facebook.com/autismmammy-105702884978190