Having boldly declared ‘the blog is back’ I have struggled to maintain my energy, inspiration and creative mojo! Smiling flower has had a dreadful virus which pinned her to the sofa for 10 days – she literally wouldn’t stand up or walk. It was a worrying time. This week, having managed two days back at school, a day with the ENT team and another day being floppy and sick, I felt some pressure to get one more morning of school in before the weekend and half term…
Before school we had an orthotics appointment to collect her new ‘piedro boots’ at the hospital. They are like mini doc martins and help her balance. It is always a big deal because Smiling Flower doesn’t like new shoes or strange people touching her feet. However, she handled the whole interaction very well, seemed genuinely delighted with her new shiny shoes and only cried once.
Because of the appointment we arrived at school late and couldn’t go in the normal entrance. So everything about the drop off routine was different. New shoes combined with strange routine resulted in complete meltdown. Of course, to some extent, I do believe that Smiling Flower just has to get on with it. Although routine is immensely helpful in negotiating life when you have multisensory impairment, it can’t always be kept to. However, I still felt awful as I witnessed a full thrashing tantrum, before the teacher somehow managed to sweep her away, cheerfully declaring they were doing dance with flashing lights and ‘she would love it’. Normally she would, but this week I doubted whether her eyes or her energy levels would take it. I asked the teacher to call me if she didn’t calm down…
A friend of mine in Exeter has a little boy with CHARGE. They, like us, are going through the statementing process for school. She obtained this quote from a leading specialist in CHARGE and it somehow put my morning into context:
CHARGE syndrome can fool you. Because children with CHARGE often exceed all expectations for what they ‘should’ be able to accomplish, the extent of their disabilities can be overlooked. Persons with CHARGE are multisensory impaired. The debilitating effects of this are staggering and hard to even imagine. We take our senses for granted. It is possible to understand that being deaf or being visually impaired would be difficult, but when the combination occurs alongside vestibular, proprioceptive and olfactory deficits, often accompanied by tactile defensiveness, it is hard to imagine how they make sense out of the world. Then throw in things like heart defects, swallowing and breathing difficulties, chronic ear and sinus infections, gastrointestinal pain and on and on and suddenly what children with CHARGE accomplish becomes heroic. But far too often their achievements are taken for granted, and people are suddenly shocked when the child is unable to accomplish something, particularly an emotional or behavioural challenge. Even with the wide variability in ability and disability in children with CHARGE it is important to understand that they are dealing with staggering obstacles, and deserve to be given as much allowance and understanding as possible.
When I picked Smiling Flower up she looked exhausted and the teacher signed she had being crying a lot and asking for me. I felt gutted. I had been in town having a very rare coffee by myself. Me time. I had been compulsively checking my phone but no-one had called. Having read this quote again I feel I need to learn to stand up for our amazing girl who is so brave and strong each day. I need the courage to stop busy teachers in their tracks and sit them down for 5 minutes to explain how much she has struggled, how little she has slept, how nervous she has become visually, how she loves school and if she’s not happy it’s because something isn’t right with her that day and they need to figure it out or call us, how it is all a bit of a jumble but the thing we know is that she needs routine and time and reassurance, and then a bit more of all three, before the people who most ‘get’ this little hero take her home again….
And yes, then I probably need to take time to have another coffee by myself and reflect on how wonderful school is and how it prevents me from being an overprotective mummy!