Being a parent is hard at the best of times. You worry about doing it wrong because this shit doesn’t come with a manual and none of the parenting books you read seem to quite cover it. You worry about them eating enough, how they are sleeping, if they’ll make friends and wonder how they’re going to make it in the world in general
When your kid is different you worry more so. I don’t mean different like quirky and marching to the beat of their own drum. I’m talking when there are intellectual handicaps and things that require diagnosis, testing, that have levels, stages or require specialist medication and treatment.
You worry about specialists. Those bastards are expensive. You have to worry about which ones you can realistically afford and if there is any rebate. If you are eligible for any kind of funding or assistance if they’ll agree to cover your specialist of choice. You hope and pray the one you end up with is the right one because chopping and changing specialists isn’t easy and you will lose time in the process back tracking and filling the new one in.
You worry about school and any of you that know me outside this blog will attest we did this one the hard way. You have to make sure it’s the right school and even if it is they have the right teacher. If its not the right fit you have to hunt down the right one which may mean chasing people for letters and attending a bunch of meetings. Its sometimes means advocating for your child when people don’t understand and making sure their voices are heard. It sometimes means telling people with more power higher up the food chain than you on these things to fuck right off and behave like a decent person. This only goes one of two ways and when I did it, thank God it turned out alright.
You have to worry about the practical parts of every day. Does your child require routine and what does that look like as part of your every day. Does your child have sensory issues and loud noises wigs them out and do they want abnormal amounts of attention. There food issues and how does this work feeding a family. Do all your shoes require Velcro (hard to do as your kid gets older) because shoelaces aren’t even on your radar yet. Working out how to communicate with someone who desperately wants to talk to you but can’t get the ideas out properly or in a way they can be understood.
I worry about the future. I worry about our son growing up. I worry about if he’ll be victim to bullies in high school. I dread people may take advantage of his beautiful nature. I worry he wont be able to spot people who are less than honorable. I worry about him finding a future partner who will accept him for all his quirks. I wonder if he will still be making T-Rex noises at 40. I worry about if he will be able to function in the world and have a job. I worry he will get stressed and people will view it as threatening and behave accordingly.
A lot of this stuff is a long way off and a lot of people say ‘why worry about it if it hasn’t happened yet’. It’s always in the back of your mind like a tiny yellow post it note just quietly on the corner of a notice board. Having a kid that’s different like this does teach you things. Patience you never knew you had. Resilience to keep rolling because you know it gets better. Pride for when they come home from school and unpack their bag, change, do their homework and have a shower without so much as a peep. It also teaches you to appreciate the little things like having a great day at school, shoes going on the right feet, or a random ‘I love you Mum’. stuff other people are probably used to. That stuff right there is gold.