How great that they have a school bus. Indeed. Terrific. The difficulty came in putting her on it, with strangers, at age six. The lavender in my front garden very nearly had a dose of fertiliser that morning as the bile rose in my throat. Quite unfair for such a calming plant. Very exciting for a red-headed girl on her first day of school (albeit at 7am….yes, seven!). Terrif-ic for her mum, apparently, although I saw it more as terrif-ying. The juxtaposition of a parent of a child with complex needs. Being able to access support services is incredible but trusting others with your precious child is such a challenge.
Normal children, whoever they are, seem have a more gradual introduction to non-parental adults. The girl’s brother had his first sleepover at his grandparent’s house when he was about two, played with friends me alongside for quite some time before he was prepared to go solo and clung to his dad’s leg at his first kinder meet and greet. The girl had ladies from our local council looking after her and therapists poking about at early intervention before she was one. She stayed at a respite house by the time she turned four. Confession time. These experiences say a lot more about her courage and acceptance than mine. At Early Intervention I was in the same room. When the physiotherapist wanted to conduct a parent session in the adjoining room from the children I kept looking through the glass in the top of the door. The council ladies were nice enough though a little bossy. They suggested I go out during respite time (Oh is that what it’s for?). So I did. Outside to weed the garden. I do recall after about a month walking to the post box on the corner to post a letter….and rushing back. She did indeed stay at a respite house…so did her brother and I, in the family accommodation out the back. I find it hard, really hard to let her go.
A sensitive carer will embrace the delicate nature of gathering child, bag of goodies and list of instructions from an anxious parent and tutt away their concerns. When the list includes a seizure management plan, the bag contains a suction unit and the child is non-verbal and tube fed one tends to see the white of their eyes. From the blatant jaw dropping to the confident We’ll be fine there is always an element of fear. I use the term additional needs because all children have needs, all are precious….but some have a little more going on. The extra stuff means extra people. Therapists, respite workers, doctors, nurses, aides, case managers, coordinators. And it means there is an expectation of parents to allow these folk into our lives and homes (whether the loo is fresh or not) and trust them with our kids. It began really early, too soon. When I had to leave the hospital and she couldn’t. A tiny, very unwell two-week old had her first sleep over without mum. And she has had a smaller dose of separation anxiety than me ever since.
All the work we invest as parents is for one purpose. To grow our kids. The bonus is we grow ourselves. I grew a little over the weekend. No not literally…sigh. The little girl who has already been on camp twice (only one night each time…are you seeing a pattern yet?) but never been to a friend’s house to play without me, did just that. You see she has some new people in her life. Good, kind and generous people. The kind who know some of her favourite things to do and set out to share them with her. The sort of family who see a cheeky kid who happens to be in a wheelchair and look forward to what she can teach them. What she can teach them. Tears roll down my cheeks as that sinks in. They took her bag with all of its tricks and smiled. And that made it so much easier for me to let go…for a little while.