When you have a child with special needs the hardest part is not the diagnosis. Getting to the point where you realise your child needs a diagnosis is hard and the process of diagnosis is of course hard. But by this point you already love your child. You’ve loved them since you knew they existed and you know that a label won’t change who they are, your life has already gone down a different path to the one you expected.
Seeing the diagnosis in black and white, reading your childs differences and needs is hard (but not the hardest thing). Honestly, it hit me like a punch in the gut, my heart broke a thousand times when I read through the diagnosis. You ricochet through a whole spectrum of emotions, anger, injustice, guilt, fear, you grieve for the life your child won’t have, but you adapt, you chart a new course. Because love outweighs everything else.
The ignorance you encounter is not the hardest thing. People look, and stare, and judge. People who don’t know and don’t understand give you unsolicited advice.
“He doesn’t look autistic”, “It’s bad parenting”, “I have an aunt who had a neighbour who knew a girl with that and they got better”.
You tire of explaining and justifying things, you tire of the looks but you grow a thick skin because, of course, you know your child.
The hardest thing is not your child’s behaviour. It is hard, meltdowns can be frightening and exhausting, I’ve lost count of how many times I’ve been black and blue. A meltdown in a public place brings a whole new level to it, you try to help your child through it while all the time carrying out a risk assessment of all the possible dangers. I’ve had to lie on top of my child at the kerbside, because my legs were sore from being kicked and my arms numb from the punches, to keep him from running into a road during a meltdown, more times than I care to remember. But the meltdowns are not your child’s fault and you do everything you can to help them through it while keeping them safe. It’s not easy but you don’t even think twice about doing it and you’d do it again in a heartbeat.
Functioning on ridiculously little amounts of sleep is not the hardest thing. I don’t know when I last had a good nights sleep, but I don’t begrudge the sleepless nights. I’d sit up for a thousand nights, and then a thousand more without question.
I’ve read that autism parents have similar stress levels to soldiers and I can well believe that, because you become hyper vigilant, constantly monitoring and assessing every situation to prevent your child from becoming distressed or disregulated, but none of the things I’ve mentioned are the hardest thing.
The hardest and most utterly soul destroying thing is the endless fight for your child’s needs.
In theory there is a system, CAMHS for diagnosis, an EHCP (education, health and care plan) and an SEN caseworker from the local authority. After your child is diagnosed an EHCP is drawn up, which outlines your child’s special needs and · what reasonable adjustments schools or colleges need to make· what extra support or therapy your child is entitled to· what kind of school or college can meet their needs.
This is all supposed to make it easier to ensure that your child’s needs are met, and their rights are protected, but while it’s all very well having these things, they only work if the people involved all put the work in.
I have spent years fighting for my sons rights, particularly his education and the stress has taken a huge emotional and physical toll. Every time a battle is won there’s a new one. I’m not asking for anything special, just what my son is entitled to and yet it’s uphill all the way, chasing things up, acting as a go-between for departments that don’t know their arses from their elbows, (metaphorically) beating down doors, although I’ve felt like actually beating down a good few doors. And it’s just not good enough.
My child deserves better, I deserve better, all children and parents deserve better than this broken, run down system.
We don’t have the time or the energy to fight for every single thing because we are putting everything we have into parenting our children, helping them to reach for the stars, because we know that our children can achieve, and yet we must fight. We fight until we are exhausted. Until we feel we can’t fight anymore, and then we pick ourselves up and we fight on. There’s no end to it, as an adult my son will still have needs, will still need support and I know from experience with my older autistic son that it’s even more difficult to access any support when they are older.
The hardest thing is becoming just another cog in the system that seems to go round and round without ever getting anywhere.
I wouldn’t change my boy, if I had a hundred more lifetimes I’d choose him again every time, and then a hundred times more, but I’d change the system to one that actually works for the children it’s there for and works with the parents rather than against them.