I’m reading a book just now about a little girl called Iris Grace, who has autism. It’s a beautiful book – not only to read but also to look at. The photography, taken by the girl’s mum, is wonderful and there are pictures of Iris’s artwork scattered throughout the book. It’s a book that has really tapped into my creative side (there is one somewhere!).
But reading the book has taken me on an unexpected emotional roller coaster. Yep…another one. It has sparked a range of emotions and thoughts that I want to get down on paper.
Firstly, I should explain that although Tilly is non-verbal and has some autistic traits, she hasn’t been diagnosed with ASD (Autistic Spectrum Disorder). We haven’t actually put her through the assessment process because we (us and Tilly’s medical team) don’t think she meets all the criteria and that many of the traits she does show are as a result of how delayed she is cognitively, rather than of ASD. We’re already connected to all the services from the NHS she would be getting if there was an ASD diagnosis anyway – treating the symptoms is more important at this stage than getting a label.
So, back to the book.
Reading about this little girl and her family’s journey has resulted in me feeling a whole spectrum of emotions: relief, sadness, envy, gratitude, guilt, hopefullness, hopelessness, frustration, fear. The list could go on. To explain each of those emotions and why I feel them would take too long – and not be particularly interesting to read!
But I do want to explore one of them, namely guilt.
Guilt. A word so commonly used by us mums, and I’m pretty sure, even more so by us mums of children with special needs. It’s a word I try to escape from, an emotion I try hard not to feel but I do feel it, most days actually. I think I do a decent job of bringing my kids up – for a 4 year old, Elliot isn’t doing too badly and Tilly is mostly happy and content. Elliot is learning at a good pace, it’s all falling into place quite easily and quickly for him – he’s leading the way and we’re right behind him providing the encouragement, discipline and confidence when he needs it. So far, it’s going well.
As for Tilly…that’s a whole other matter. Her development path isn’t so straightforward, in fact I don’t actually know what the hell it looks like or what the destination is. It is certainly undulating, there are a lot of hidden bends, some pretty big ditches that are difficult to climb out of and absolutely no map to refer to. But in between all the difficult parts of the path, there have been glimpses of the most amazing sights we didn’t think we’d ever see. And because there was no guide, no map….no idea where the path would lead us, those wondrous sights felt all the more special. Some were milestones that other parents would understand, such as when Tilly took her first independent steps at age 2 years and 2 months, but many others were smaller and less significant (to most) that came out of nowhere. Like when she started to lead us to the kitchen to ask for food – or actually, when she started to eat food (that’s another story in itself!); or when she gave us a hula hoop to ask us to roll it for her to catch; or when she first grabbed the hands of everyone in the room and got us to form a circle so we would play ‘ring a ring a roses’. These were big milestones for us, she was trying to communicate and initiate play (concepts we didn’t think she understood at one point), they were signs that she was progressing, she was moving further along that development path.
But back to the guilt. There’s an internal fight always going on in my head when it comes to Tilly. And that’s the one where I question if I’m doing enough for her. The mother of Iris, the 6 year old girl in my book, is an inspirational woman. She didn’t stop searching for new therapies to try, she spent time watching Iris and learning about her and what made her tick. She changed the way they lived to fit around Iris and her needs, she even home-schooled her to ensure she was able to educate her in a setting Iris would be comfortable with and she knew she would thrive in. I wonder if I’m really doing enough….or have done enough. Without any specialist taking the lead and telling us what therapies might work for Tilly, we’re kind of on our own. I’m sure we’ve only scratched the surface of what’s out there – unfortunately, knowledge, time and money are all stumbling blocks for doing more. So that’s where the guilt comes from. Should I be doing more? Should I spend more time researching and investigating? I’m having to write my own book, create my own map for my daughter’s development – and I’m no expert. I’m scared I’m not doing it right, or I’m not asking the right people the right questions. Or that I’m missing a really important therapy that could help her even more than the others we’ve tried.
I won’t stop searching or trying new things but I have learnt a very important lesson from a time when she was a bit younger. We were doing daily therapy exercises from an excellent charity called Brainwave – but our mutual enjoyment started to turn into stress and anxiety because neither of us were getting as much from it as we did in the beginning. I was having to push her to do the exercises, she wasn’t responding as well to them and I was getting frustrated. I felt incredibly guilty when we didn’t do them – but I also felt guilty when we did. It suddenly hit me one day that I’d forgotten how to be her mummy. The line between my roles as mum and therapist was blurred, and I’d lost my way. I chose to take a step back from the therapist role for a while because I wanted to remember what it was like to enjoy her, to bond with her as daughter and mummy again. It was an empowering feeling.
So we’re now in a place where we’re trying a new therapy (Gemini), and are about to revisit Brainwave to get a new set of exercises – we’re all committed to working hard but I will be aware this time to balance my roles properly, to find that equilibrium, and not let the line between therapist and mum become so blurred.
Wish us luck!