Thursday, 16 February 2017
I recently took part in a parents evening for families who are going through the process of making the decision as to whether to send their child to mainstream school or special school.
I was there to tell our story and highlight the factors which led us to choose special school for Mojo. It felt strange to be asked to do it because it made me recognise that Mojo and her friends are not the babies anymore. We have successfully navigated this hurdle and emerged with a story which shifts us to expert status. It was an opportunity to help those about to begin the inescapably arduous task of securing an EHCP with the right support package for their child, in the way that other families helped us when we were starting out (although two years ago literally nobody knew what the hell to do with an EHCP form but that's another story).The parents I spoke to after the presentation were mostly full of confusion, stress and conflicting emotions. All very familiar things from our own journey. I could completely understand why they were feeling so torn given that I, being completely confident that Mojo is in the best possible school for her needs and is progressing beautifully, came away with concerns that I'm not doing enough to ensure she spends time with non-disabled children of her own age and what she might be missing out on by being 'in a bubble'.
In the end I came back to my Dad's advice, which as a teenager I used to think was depressingly glass-half-empty but the older I get the more I see the truth in it. He always says that nothing in life, nothing at all, is ever completely good or completely bad. We just make choices based on what we think is the best thing to do at any one time.Parenting a child with disabilities involves so many decisions regarding care, health, support therapies and communication. I find advocating for my daughter in a world where I frequently feel out of my depth and feel like the least qualified person in the room is daunting. Trying to make the right choices for her. Desperate to get the answer right. Desperate for there to be a right answer.
Often there simply isn't a right decision. There are just decisions. Some feel like a small step in the right direction and others feel like a giant leap of faith but each one shapes what comes next and each one builds (or tarnishes) your confidence in trusting yourself to make these decisions.While we can feel relief that we have, so far, made choices which have turned out to be absolutely right for Mojo regarding schools and education, I still find the medical decisions the hardest to come by. The sleepless nights come from worrying about not doing enough to ease Mojo's health struggles.
We recently made the choice for Mojo to have more surgery. A simple, hopefully uncomplicated adenoidectomy and grommet insertion. Why is it that the simple surgeries are the ones which trouble me the most. It's like I'm poised for something to go wrong during an avoidable procedure, one we've chosen to have to improve her quality of life, rather than a medically necessary operation. The weight of advocacy when it comes to putting her at any risk can feel a bit suffocating if you over think it. Over thinking? Me?It may well be that it is her frustration with my decision making which has motivated Mojo's recent developments with communication. Our essentially non-verbal girl has started to become a bit of a chatterbox. The noises and squeals which have always been part of her vernacular are become more formed, more intentional. There have been times lately when I hear a word, a whole recognisable word and it's come from Mojo. She shouts for Daddy when he gets home. She answered the question the nurse asked her with the word 'sticker' clear as a bell. She has even learnt to say her BFF's name. As if that wasn't exciting enough, her fine motor skills seem to be keeping up with her vocalisation and her Makaton signing is shifting from Mojo-approximations of words and letters to sharper more obvious signs which are far more easily recognised by other Makaton users. These developments are very exciting for us. Mojo has raised a bar which I had taken my eye off, I'd been looking at the communication book while she decided she'd not given up on verbalising just yet.
In the end the choices we make only go so far and the real decision making is done, instinctively, by Mojo herself. I might think I'm in charge but ultimately it's always in her hands.