I changed when I became label-less with my eldest child. Pulled from pillar to post by my own emotions, feelings and actions. By his emotions, feelings and actions.
I always knew he was ‘different.’
I loved his differences, and I still do. But when he started school it slowly became apparent that those things I loved about him were in fact a ‘problem.’
He wasn’t at the same level as his peers, and as the years have passed he has become further and further behind. Not just academically, but socially and emotionally too.
I started a blog because I struggled. But whilst struggling I still saw the humour in life, and after a particularly hard day of parenting, I knew that the things that had caused me stress, when said aloud were actually thigh slappingly hilarious. They still are.
Except for the times they’re not.
My son doesn’t tick all the boxes needed for a diagnosis. Because of this he is expected to conform and adapt to things within life around him that he is uncomfortable with.
It wasn’t until I accepted the fact that he needed help, and in order to acquire this help he needed a label, that I began to realise that whether I liked it or not, they were useful and necessary.
It wasn’t until he was rejected by services who told me he didn’t quite tick all the boxes required that I began *needing that label.
My son doesn’t meet expectations for a typical child his age, and he doesn’t meet expectations for a child with special needs.
So where does he fit? Where do we fit?
We’re stuck in the middle.
I don’t need that label to define my son. But it appears I need it to define me as a parent.
I yearn for a day when I don’t go through the vicious guilt cycle. It’s my fault. I worked too much, I didn’t force him to sit down and listen to me read to him. I didn’t count enough, talk enough, socialise enough, try enough, push enough.
I need that label so that when we sit down for a meal and he refuses to eat things on his plate that have touched eachother or are the wrong colour, I don’t one day find the funny side, the next day move what’s on his plate that’s offending him, and the day after that feel like grabbing the plate and smashing it up the wall.
I need that label when I lie in bed next to him after a long day, waiting for him to go to sleep as he jerks around, sings, refuses to shut his eyes and taps his foot relentlessly. All things that I know he can’t help.
But who says he can’t help it?
I need that label so I can understand why he melts down, screams, hits me, and can’t hold down a friendship because of his sensitivity and need for control.
I need that label so I can be a better parent. One that fights with him, not against him.
At the minute we’re outsiders. We don’t belong anywhere.
We can’t always do things that other ‘normal’ families do because of a fear that it will end in meltdowns, upset and damage to confidence. But we can’t attend any special needs events either, because I’ll feel like a fraud.
People assume that when your child is given that diagnosis, that label, that ascertains they are different, a parent is lost, bewildered and afraid.
But sometimes the real fear, anxiety and bewilderment comes in the waiting. That limbo where you know they need help, YOU need help, but no one is helping. Where you ache for that sense of relief where you will be told exactly what you’re working with and you can then take the steps to understand, adapt, and have their back. You can say goodbye to the self doubt. It isn’t your imagination. It isn’t because you were a bad parent. You’re not just making excuses for them. This is who they are, and this is how we deal with things.
I don’t need to tell the person who rolled their eyes at me in a restaurant today, as my son sang the same line of a song over and over again as he climbed all over the seats, that he has a label that explains what that’s all about. But I need it for my own mind that is torn in two, one side knowing that he can’t help what he is doing, and the other side that is screaming at me to make him stop because people are judging us. Judging me.
I really hope that one day that time will come. Where my mind will be at peace. Where I don’t have to justify behaviours and feel the bitterness of doubt coming from the person who I’m talking to.
I never thought I’d be this person. A person who aches for a label. And all the while feeling selfish for not always being the parent that I know I need to be.
But meanwhile we’ll hover.