Finding Hope: A Parent’s Journey

By Zoe, mum to Jack, 8.

There were good days and bad days, but during those six weeks of school holidays last year, the bad days seemed endless. Jack’s behaviour was completely off the charts – I couldn’t control any aspect of his life, including his very restricted, unbalanced diet. He’d also got it into his head that he could leave the house whenever he wanted, at the age of seven, which meant I had to lock all the windows and doors and hide the keys. I was genuinely scared about where he might go next. One morning, our neighbour found him in the local shop and had to bring him home.

Shopping trips became a nightmare. If we went to any shop, Jack would pick up everything in sight. The tantrums that followed were awful, with everyone staring at us. I felt judged, exhausted, and completely out of my depth.

Then Joanna from First Steps ED came into our lives like a guardian angel. She saved my life. Jack had just received his autism diagnosis and had just been discharged from hospital care. I didn’t know what to do next – I was just given a list of books to read and no other guidance.  I felt completely lost.

Then Joanna phoned and reassured me that Jack needed additional help. I remember being in the middle of a food shop, almost in tears, with Jack picking up everything again. Joanna told me she was there to help. Those words meant everything.

The one-to-one sessions began – 12 sessions in total, every week initially, then monthly. Our last session was in mid-January. Some changes happened quickly. Jack used to refuse everything I asked him to do and would call me names, but if someone else asked him the same thing, he’d do it without question. Joanna used this to her advantage, asking him to do the things that were needed. Every week brought a new task, focussed on introducing new foods gradually.

We’ve now cut gluten out of his diet completely. Before Joanna, Jack lived on sandwiches and chicken nuggets. He’d eat more when we were out, but nothing I cooked at home. Now, he’ll eat anything – he’s actually excited to try new foods. He would only eat familiar foods before, but he trusted Joanna. She was so calm and patient with him.

Jack genuinely enjoyed the sessions. He’s very clever with numbers and flags, and Joanna would do a test at the end of each session to wind him down. He couldn’t wait for those tests. He doesn’t like sitting and listening normally, but by the end of our programme, he would sit through the entire session.

Jack is still recovering, but he’s happier and healthier now, and food has become exciting for him. Joanna taught us to make it fun – smiley faces on plates, cutting pizza into dinosaur shapes. It wasn’t just about food either; she helped with his mood swings too. I got support as well as Jack, and she gave me the tools to deal with his behaviour in general.

Everyone noticed a difference in Jack within just a month. Even his headteacher was so impressed that he referred another parent at school for the same support.

My advice to anyone in a similar situation is: don’t struggle alone – it’s such a lonely place to be. Take the help that’s available. I’ve always thought I should deal with problems myself, but that nearly broke me.

Looking back now at the run-up to meeting Joanna, we were in such a bad place. Joanna changed our whole lives, and I’ll be forever grateful for that guardian angel who appeared when we needed her most.