When Toby was around 12 months old when he started his autism story, Michelle, my daughter-in-law, began to voice some concerns about his development. Specifically, she was worried about his speech. I remember feeling a mix of emotions as I listened to her—part of me reassured her, saying that not all children develop at the same pace, but deep down, I think I was in denial. I had concerns of my own, but admitting them felt like a harder pill to swallow.

Looking back, I realise that moment was the start of our autism story—a journey filled with questions, emotions, and eventually, understanding. At the time, I didn’t fully grasp what lay ahead, but Michelle’s concerns planted a seed that would later grow into a deeper exploration of Toby’s needs.

Who Is Toby?

Toby is such a clever little boy, full of quirks and personality. He had a set of stacking cups, numbered from 1 to 10, and he would spend ages lining them up just right, making sure they were perfectly in place. His joy came from knocking them down and building them back up again. It was a simple, repetitive act, but it filled him with happiness. He also had a special love for cars. He would line them up meticulously, often in size order, and I couldn’t help but be amazed by how focused he was.

Even with all these impressive abilities, Toby didn’t seem to connect with others the way I thought he might. He didn’t make much eye contact and was content to play independently. Looking back, these were signs that I couldn’t ignore, but at the time, I brushed them aside. Toby’s language was limited to saying “Mummy” and “Daddy” and making car noises from time to time.

Tobys Diagnoises & How it hit me hard

When the professionals said they were pretty sure that Toby was autistic and non-verbal, it hit me hard. The initial feelings of sadness, fear, and anger were overwhelming. I wasn’t upset because I wanted a “perfect” grandson—Toby was perfect to me, just as he was. But the thought of him navigating a world that might not understand him, and without the ability to communicate, was terrifying. I couldn’t help but worry about how much harder life was going to be for him, for my son, and for Michelle.

The reality of how difficult their journey would be felt like a weight I didn’t know how to carry. I knew they were going to face challenges that many would never understand, and I feared for their struggles. But at the same time, I wanted to stay strong for them. They had enough on their plate already, and I didn’t want to burden them with my worries. I wanted to be a support, not an added weight.

Tobys Progress Over The Last 6 Months

Over the past six months, Toby has made progress in ways I never expected. He has started to say more words, even if they’re just singular ones. To some, this might seem like a small milestone, but to me, it feels monumental. Every word he says is a victory, and I couldn’t be prouder. Just recently, he took my hand, looked at me, and said “coat.” he wanted me to take it off something he has not said or done before. That simple moment filled my heart with so much joy. It might seem small, but for me, it was a breakthrough for his Autism Story. I find myself in awe of not only how much I am teaching him, but also how much he is teaching me.

One of the things that has become an integral part of Toby’s expression is his stimming. He goes through phases of different stims, but his main one is flapping his hands when he’s happy or excited, for me, it’s become something I cherish. Toby’s flapping is his way of showing the world how he’s feeling, and I think it’s a beautiful, unique form of communication. I love it, and I don’t care if people look. In fact, I often join in with him. I also think it gives me a great excuse to act a little silly—something we all need in life. Let’s face it, who doesn’t enjoy a moment of carefree fun? Toby’s stimming reminds me that sometimes, it’s okay to just be yourself, no matter what others might think. If flapping my hands along with Toby helps him feel supported and understood, then I’ll happily join in I’ll keep learning from him. I’ll celebrate the big moments and the small ones.

Being Beside Toby and Sharing His Autism Story

As a Nanny, I’m learning to embrace Toby’s unique journey and Autism Story. It’s not always easy, and I still have moments of fear for the future, but I know one thing for certain: I will be there for him, for Oli, and for Michelle—through every milestone, big or small. Toby is a beautiful soul, and his journey is his own, one that I’ll be proud to walk alongside, every step of the way.