Before I was a mother of an autistic child, I had certain presumptions about the services a family like mine would be entitled to. I thought mothers who had to quit their jobs to look after their high needs children full-time would get a benefit that would cover basic expenses, similar to what you might get from an unemployment benefit. I was wrong. I thought schooling support would be automatic and cover the child’s basic needs. I was wrong. I was wrong about a lot of things, and yet somehow it still manages to surprise me when I encounter major short-falls in a system that is supposedly in existence to help the neediest members of society. This post though is not about that short-fall in itself, it is about the damage that gets done to those who have to access and navigate the system, in order to squeeze out inadequate support and services. It is about how different I have become over the past eight years, and how I feel a fair chunk of that personal change is thanks to the way the system is (poorly) run.
I am not OK. I am stressed, often depressed. I am sleep-deprived. I have high anxiety. I am fragile. I feel broken. As hard as it has been being a mother of the children I have, that job has been made so very much harder by the government’s systems.
From the first day you reach out for help with your child, it’s like a highly judgmental never-sleeping set of eyes enter your life. They first assess whether the child’s problems are all your fault as a faulty parent, and when they decide the problems are real and exist independently, you have to maintain perfect parenting as therapists and social workers and educationalists and bureaucrats breeze in and out of your life; taking notes, comparing you to “the average,” measuring your actions and words and emotions.
I learned that if I showed them my anger and frustration about the lack of services, I would be stone-walled and put to the back of the queue until I could behave myself; if I showed them sadness and despair then the services for my son would be placed further down in priority and attention would shift away from him to me no matter how much I insisted my sadness was because I needed his services in place, again putting his services on hold; if I showed relaxed calm or happiness I would receive comments along the lines that my family seems to be doing fine and maybe we don’t require the level of services we’ve been receiving anymore; if I showed a stone-face of little emotion then there must be something wrong with my emotional connection with my child and again the focus would shift unhelpfully and incorrectly to me.
Over the years I have been forced to tightly control my emotional, facial, and body-language interactions with the government employees to keep them focused on what matters and why they are in my life – to get my son what he needs. I have learned to smile a little and appear confident, but not cocky or too sure of myself, I control every aspect of who I am when I have to deal with these people, and it is mentally exhausting.
That exhaustion can become overwhelming. If I have a visit due from the local Needs Assessment Services Coordinator, or an IEP, or any other government-funded visit or assessment or phone call, I find myself completely wiped out for the rest of that day. So much rides on saying the right things, in the right way, and making myself appear right to them. If I screw it up then my precious sons face the consequences of my failure, and I can’t be OK with that. I have to get it right – make it look right – even if it ruins me.
I have become so used to the exact precision required in filling out forms and applications to first get and then to retain government services and support, that it has enhanced my already unhealthy inclination towards being overly detailed-obsessed and a perfectionist. The time and cost involved in getting it wrong, can be of such significance that it makes sense to obsess. That plus the feeling of always having the government watching and judging, plus the need to tightly control my emotions and appearance when interacting with these people, and none of this is healthy for me.
I have been shaped into what they want me to appear to be: In control and calm. I feel like I have to be the background noise of my son’s life just to keep their focus on him and not me, I have to play my role as defined by them to make sure they play their role. Through it all, after years of this, I am feeling utterly shattered, but I am extremely good at putting on my mask and getting through my day. My son is doing so much better now in his life, he is doing fantastically and I have so much hope for his future. But me? I don’t have so much hope for me or my future, and I’m not even sure who I am anymore. I know I shouldn’t talk openly about how broken I am in the autism community either, because every time one of my many autism mum friends speaks out they get loudly attacked by other members of the autism community who consider their honesty and emotions to be irrelevant or inappropriate when all the focus should be on the child. It just reinforces for me that my own experiences and emotions aren’t important.
Say the right things, look the right way, smile at the right times. The child always comes first, the mother is a back-drop.
So yeah, I’m damaged. My son’s autism wore me down, then the government came to help and hurt me worse in the process. I want to say “it was worth all the heartache and headaches to get my son where he is today,” but I just don’t think it had to be done that way. There must be a better way to run the system, that doesn’t crush the people it’s meant to help. This shouldn’t be OK. This isn’t OK. I’m not OK.