If you have the enormous privilege to call yourself someone’s parent you might look back with fondness at the crushing exhaustion of caring for a newborn who does not sleep. You might harbour a small amount of nostalgia for the endless nappy changes. Maybe you miss the days when simply leaving the house required the planning and precision of a military operation.
The reason you get to look back on these phases is precisely that. They were, typical developmental, phases.
If your child’s development is not typical these might not be phases. These might be forever. Your child’s developmental milestones like sleeping through the night, toileting independently, feeding themselves, walking and the rest might be delayed...sometimes indefinitely.
If the world of SEN is blissfully unfamiliar to you, do you feel tired yet?
Think about your toddler having a strop. A perfectly ordinary expression of frustration. Maybe they throw a toy at you. Maybe they hit or kick you. Maybe they bite you or pull your hair.
Now imagine your child is 13 years old or 15 years old or 20 years old and developmentally they are still here. Still doing this. They’re big. It hurts. Sometimes you don’t feel safe. And you feel bad. You love your child. Your child loves you.
Are you tired yet?
My personal experience of getting battered by a child who was big enough to hurt me was that during that lonnnnng period I never didn’t love them. But I did find it hard to like them. And I would notice myself tense waiting for the next kick off.
What if your child is never able to feed themselves independently? What if your child has a medical need that regularly requires an ambulance?
Are you tired yet?
When friends or family members tell you how hard your life is do not allow this to distract you from what you need to do, When they say, ‘I don’t know how you do it’ they’re actually saying, ‘I don’t know how I’d do it’. And it scares them. Now here’s the good bit. They don’t need to know how you do it because you are the one doing it. Not them.
I call this wonky empathy. It can feel back handed, empty, unhelpful. Personally, if you can’t imagine ‘how I do it’, it’s okay. I don’t mind.
If you want to be helpful, if you want to show you care make an SEN parent a coffee.
Do you remember when your child was tiny and it felt like you never got to drink a hot drink while it was still hot. Yes. That. That might be forever too.
Occasionally, you might see an SEN parent out in the wild, maybe in a supermarket or a park. If they look like they’re having a hard time try not to point or stare. Try not to roll your eyes or tut and try not to offer terrible - or any(!) advice or judgement about their parenting or about their kid.
No not speculate about their child’s diagnosis. It doesn’t matter. Just know that it’s hard.
Maybe just ask them if they’re okay. Ask them if there is anything you can do to help. Then, simply, respect their answer.
I am making the world of SEN sound joyless. It’s not. The world of SEN is awesome, joyful, hilarious, loving, compassionate, supportive.
But some days we are just so damn tired.
If you haven't already, look at the blog on Chronic Sorrow for a peep at the emotional world of the SEN parent.
***As ever, all views are my own. You are allowed to have a different view.