My daughter is changing. It’s a change that has been creeping up behind me but I’ve naively ignored it and instead focused on my merry stroll forward – too scared to turn around and face up to the scary reality that my little girl is growing up.
Tilly no longer looks like the teeny tot I still see her as. She is stretching, she is filling out, her shoulders are becoming broader, her legs longer and more muscular. Her posture is changing, her hair is growing and her face is more defined. And puberty is on it’s way.
My small, petite, poorly child is growing into a healthy, strong big girl. It’s wonderful. If the anxious and scared mum of Tilly, aged 1 (a baby girl who refused to eat food or drink high calorie prescription formula) had an insight into this vision I see before me now, she would have relaxed, trusted her daughter’s feeding development path and enjoyed her baby girl a whole lot more.
Sadly, inside this strong 8-year old’s body, is the brain of a much, much younger child. I don’t like to put a number to it – probably because it would be too frightening to say it out loud (even though, deep down, I know roughly how low that number would be). She has always been delayed, in fact significantly so. But when she was smaller, it was easier to dismiss the delay. Her peer group were ahead of her, but they were each at different stages of development so there wasn’t a ‘norm’, and because she was so much smaller than them all, we could hide behind the delays a little.
But these growth spurts are highlighting how affected she really is. We have moved on from using the term ‘Global Development Delay’ – a term that implied that she would catch up – to ‘Learning Disability’, a term that I now know will never go away. And to add to her labels, she also has an autistic spectrum diagnosis – another label that won’t ever go away.
Whilst her peers are proficient at reading and writing, becoming more independent and able to look after themselves in many ways, Tilly is still unaware of her toileting needs and is in nappies day and night; she doesn’t have the motor planning skills to figure out how to get herself undressed or dressed; or the fine motor skills to spoon feed herself. The list goes on.
She has progressed so much in the last couple of years and I see such a difference in her in so many positive ways. But these last few weeks have highlighted how life with Tilly is changing and bringing with it a whole new set of challenges.
When she refuses to walk from one room to another in our house, I used to swiftly pick her up and take her there. She’s too heavy now, and even though I consider myself as being in reasonable physical shape, my back suffers badly if I attempt to pick her up now.
Her giggling episodes are more frequent and more bewildering the older she is becoming, and I struggle to calm her down. When once I would pick her up, and cuddle her tightly to give her the proprioceptive input she needed, I can no longer do that.
Her giggling fits are often accompanied by her refusal to stand up which makes changing a dirty nappy almost a mission impossible (her giggling episodes are definitely associated with digestive issues – but there’s nobody out there who has taken this seriously enough to help).
Then there’s impending puberty – which she is already showing signs of starting. I don’t even want to think about how to manage any hormonal issues that affect her behaviour, or the prospect of her wearing a bra, or her starting periods. We’ve (hopefully) got a few years until that hits but it’s a scary reality of what is to come.
So, once again, it’s time to get my research head on and find out all I can about dealing with this next stage of our journey because that special educational needs parenting manual doesn’t exist. My hope is that the (much!) older version of myself will be writing a blog in years to come about how easy this part of Tilly’s life was and that I shouldn’t have worried.
In the meantime, if you are reading this and have any insight, experience or information into what’s to come and how to help us, please get in touch. I’d love to hear from you.