28/02/2025
š° Do you know that feeling, the knotted, churned up, dreaded anxiety when your child has an appointment that you just donāt think is going to go well?
The questions and thoughts whirling around your head ā Will they listen to me? Will I be believed? Is the tiny snippet they see any use at all? š¤Æ
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. Iād 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 ātry harder.ā No one cared, no one could help, or even wanted to help. š
Beyond exhausting.
In the appointment the consultant told me āWell I think your son is okay, I mean heās sitting here quietly and calmly so heās doing fine.ā
š” Ah yes, the old "he's fine here" comments!
In the past Iād 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, Iād have probably either lost it with him or been so upset that I couldnāt speak at all, walking out with regret at not being able to get my points across.
However, now, Iāve learned how to deal with those emotions in the room and was able to calmly but assertively explain to the āprofessionalā what masking is and why itās 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 wasnāt what I was hoping for, and despite feeling some anxiety and disappointment, it didnāt 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 donāt realise though is that we also experience trauma.
š Watching your child suffer due to broken systems is excruciatingly painful.
š¤ Being blamed for not being good enough as a parent leaves long lasting damage.
š Feeling like youāre 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 āgood momā and doing as youāre told by professionals.
Itās no wonder you feel anxious, exhausted, and defeated!
The effects of these experiences donāt 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 āprofessionalsā may not always listen, but I will, and Iāll help you make sure they do too!
If youād like to find out how to become confident in advocating for your child, send me a direct message.
