Mum of two Grace Filmer strongly suspected her eldest daughter had autism. She faced countless barriers trying to get Wynnie a diagnosis, something necessary in order to be able to access any kind of support. The strain started to take a toll on Grace, until she answered the door to Home-Start.

Grace shares her experience in her own words:

“I strongly believed my oldest had autism, but, until we could get a confirmed diagnosis we were not entitled to any additional help. 

"I’d been back and forth to the GPs to ask for a referral to a paediatrician, yet never managed to get on the waiting list. Since Wynnie was one, I’ve known there is something going on. There were so many signs.

“Wynnie will only sleep for three hours a night. According to my mum I was the same when I was younger. In fact, I was Wynnie’s age when I got an ADHD diagnosis, but I suspect I’m also autistic too".

Everyone would stare

“We’ve never been able to go to parties because Wynnie would have a meltdown. Everyone would then stare, and it would just be horrible for all of us. Although isolating, it’s easier to stay home.

"When Wynnie has a meltdown, she loses control. She gets very physical, kicking, punching, and literally pulling out clumps of hair. You can see she’s not able to stop it. All I can do is hold her to keep her still until she calms down.

“Another aspect that makes life difficult is Wynnie doesn’t see risks in anything. If something was on fire, she’d walk towards it. If there is a road, she’d run across it. If something is high, she’ll want to jump off it. Just a few months ago she broke her feet in three places jumping down some stairs".

Hospitalised for not eating

“Eating is another challenge. There are just five foods she will eat. When she was a baby, I was so excited about weaning. As a chef, I was looking forward to creating nice flavour combinations. It soon became apparent that she’d only eat beige food. If the food I offer is not from her list of five acceptable foods, then she won’t eat it. I’ve tried the ‘she’ll eat when she’s hungry’ approach. It didn’t work. She’s been hospitalised twice for not eating. Both times she ended up on a drip.

“Even playing at home is hard. There are specific toys she wants to play with. She has no interest in new toys. If you touch the toys she is playing with she’ll have a meltdown. It’s particularly hard with my two-year-old daughter River.

“Day-to-day life can be hard. I felt quite split between my two children because Wynnie does require extra support. My health visitor saw what a struggle life was and referred us to Home-Start Essex".

Home-Start group support

"Alison from Home-Start Essex visited us at home and suggested we went along to the weekly family group. Those groups very quickly became a lifeline to me. I can’t put into words how much they’ve helped. I remember going to the first group. I had no confidence. I had no spring in my step. I didn’t have the energy to fight for Wynnie, fight to get her referred and fight to get her the support she needs.

“Each week at the group my confidence and my energy returned. I’d really look forward to Wednesdays. It was the day of the week when I could recharge. Talking to the other mums and the volunteers I started to understand how capable I was. And also how everyone has their own struggles and that we can help each other through them. My confidence was building, and I felt lighter. More engaged with the children and basically just a happier person.

“Whenever I was struggling, I’d contact Alison and we’d talk things through. After every call, I felt better and had a plan of what to do next. At the group we did a behaviour course with Emma, a behaviour specialist. Emma taught me how to see things from a child’s viewpoint. This has made such a difference to my parenting. It helped me to help my children regulate and understand their own feelings.

“Being in public with a child who is autistic feels like walking a tightrope. If the slightest thing goes wrong and upsets Wynnie I know we will get comments and people staring at us. The course helped me to stop caring what strangers think and just focus on doing right by my child. The whole thing was such an eye opener. I learned how to advocate for my child. I learned about setting boundaries".

Home-Start made me feel powerful and capable as a parent

“Emma and Alison helped me to feel confident enough to advocate for my child. When I told them about Wynnie’s lack of sleep, Emma shared with me lots of information about melatonin to take to the GP. They helped me to prepare for the appointment. It made such a difference. Not only did the GP prescribe the melatonin but they also referred Winnie to the paediatrician. 

“Home-Start made me feel so powerful and so capable as a parent. I’m really hoping to start volunteering for Home-Start soon when the children are in nursery. It will give me a sense of purpose and it will be nice to help others.

"My family has benefited hugely from Home-Start support and I want to help do that for other families."

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