28/02/2025
😰 Do you know that feeling, the knotted, churned up, dreaded anxiety when your child has an appointment that you just don’t think is going to go well?
The questions and thoughts whirling around your head – Will they listen to me? Will I be believed? Is the tiny snippet they see any use at all? 🤯
My son had a hospital appointment this week and I felt just like this. I had a feeling I knew how it would go, he would be discharged with no further support. And my suspicions were true!
In the past though, the anxiety and rage would have taken over. I’d have worked myself into a frenzy, spending the week before the appointment feeling at the end of my tether, thinking through all of the possible scenarios and outcomes.
Then after the appointment, sheer devastation that once again. Unheard, blamed, and left to “try harder.” No one cared, no one could help, or even wanted to help. 😭
Beyond exhausting.
In the appointment the consultant told me “Well I think your son is okay, I mean he’s sitting here quietly and calmly so he’s doing fine.”
😡 Ah yes, the old "he's fine here" comments!
In the past I’d have been so enraged by his comment having been in the room for less than 5 minutes, him making a judgment after seeing a snapshot of life, and an inaccurate one at that, with him failing to see the boy behind the mask, I’d have probably either lost it with him or been so upset that I couldn’t speak at all, walking out with regret at not being able to get my points across.
However, now, I’ve learned how to deal with those emotions in the room and was able to calmly but assertively explain to the “professional” what masking is and why it’s damaging to make assumptions within 5 minutes of seeing a young person without listening to them or their parent!
Although the outcome of the appointment this week wasn’t what I was hoping for, and despite feeling some anxiety and disappointment, it didn’t consume me like it has in the past.
I can still function, feeling optimistic and hopeful about the future.
As a mum of an autistic child, we often think about the trauma our child is experiencing, and so many of our kids do experience horrendous trauma.
What many people don’t realise though is that we also experience trauma.
💔 Watching your child suffer due to broken systems is excruciatingly painful.
😤 Being blamed for not being good enough as a parent leaves long lasting damage.
😭 Feeling like you’re being ripped in half, your instincts screaming at you, telling you that your child is not okay, but at the same time trying to be a “good mom” and doing as you’re told by professionals.
It’s no wonder you feel anxious, exhausted, and defeated!
The effects of these experiences don’t just go away. You carry them with you like a heavy bag weighing you down as you go through life.
Every appointment or meeting, the old anxiety rears its ugly head again, the awful experiences from the past poking out of the bag, causing your emotions to rise and take over, over boiling, overwhelming.
The “professionals” may not always listen, but I will, and I’ll help you make sure they do too!
If you’d like to find out how to become confident in advocating for your child, send me a direct message.
