18/10/2025
All the feels for this
I had a thought just yesterday and I wanted to share.
Right now I am sensitive and exhausted.
I am grieving again for the life we lost when Angelman Syndrome came into our lives.
We’ve had a rough time over the last few weeks with seizures. Three hospital admissions. Hundreds of phone calls, ongoing advocacy and stuck in a world of uncertainty. No breaks, 150% focus constantly. It’s a lot.
Usually I can handle the stares from children we don’t know looking at Ted. This week however it was very off putting. Uncomfortable and so so sad.
Has anyone stared at you before? How does it make you feel?
Have you ever had a traumatic event and then walked out into the world? Where everyone is oblivious to the fact that for some people their whole world has been sent into turmoil.
It’s a very strange feeling.
When you coordinate the two together, feeling so far removed from “normal” and standing out so much it makes people stare. It exponentially affects the level of grief and distress.
While in hospital and isolated from home and family I longed for normaility to be returned. Discharging from hospital there is this expectation of normal to return once you leave the hospital bed.
The experience of our normal vs everyone else’s normal is so very different. The stares hit hard. Way harder than any other time.
Not necessarily the fault of anyone. Curious kids and adults who offer smiles just because they see the wheelchair despite our unseen trauma are not malicious.
The realisation for me however that they are staring because of the wheelchair. One symptom only of Angelman, Ted cannot walk independently.
Only one symptom bings on a stare.
It’s not the only one and it’s not the most brutal.
I know that with mobility comes a massive amount of stress to supervise and keep safe. So it’s not something I necessarily put at the top of the list of things I would take away from Ted.
What about the other symptoms!?
ALL the other symptoms.
The ones i try to remember as most important while sometimes forgetting the part about Ted being non-verbal.
Imagine that….
Forgetting to mention that your son cannot talk!?
Again….. profound.
But not the only thing going on here. Certainly again not the one symptom I would take away from him after the last few weeks.
Gut wrenching to realise.
In fact i remember the day Teds speech pathologist first mentioned sign language. It was another diagnosis day. Cemented into the description of Ted.
It was like just finding out; by the way, he isnt going to speak the same language.
Finding out i would have to learn a new language….. his sister, only a toddler at the time would need to master it to have any sort of relationship with him. His Dad. How would i ever get him to learn a new language!? And everyone he knows…..
It felt like suddenly i lived on a completely different planet. Overwhelming gut wrenching grief.
For me I feel grief so much more in times like this.
When the realisation of our experience vs a typical family’s experience hits like a Mack truck.
When im exhausted, overwhelmed and worried and have just “got back to normal”, to be faced with a child staring at Ted.
Usually I can break the awkwardness with cheerful playfulness and I just say hi to kids for Ted. Generally it’s well accepted and I use it as a chance to show other kids how to engage with a hi5 or fist pump. And kids are receptive…. Their parents are still akward as heck. Despite normalising and adjusting the mode of communication and including their children it’s almost as though Ted is a mascot of some sort and they move on politely.
I can’t do it in times like this. I can’t make the small talk for Ted and make the stares more comfortable for him.
What that must feel like emotionally for him…. Just breaks my heart even more.
This week I couldn’t wait to get back to our little town with all of Ted’s friends. He is just one of them, they see the child not the disability and greet him the same as any other child. The response from Ted is polar opposite to the response he gives those who stare. He feels it all. He engages and delights in friendship. It’s easy for me when they are there. The hard work was years ago now and his friends have their own relationship with him that doesn’t require so much of my effort. So it’s becoming more prominent when strangers come into contact and i can tell it makes Ted very uncomfortable to be stared at.
He can’t exactly say “are you lookin at me, punk!?”
And i cant exactly say it for him either, regardless of how we feel.
One of the highlights this year was at soccer when Ted’s friends all approached him while we were watching his big sister play. I adjusted the handles of the wheelchair, gave his friends a quick tutorial on how to drive and let them take him.
They thought it was great! They loved the independence of having Ted to themselves and engaging and playing with him the way they chose to. They were being little boys together, whatever they were up to they took Ted and he was right in it. Thats not anything i can ever personally offer to Ted. That is though one of the reasons Ted is enrolled in a mainstream school.
The children in Teds life, close to him all have to put in effort to engage with him and they know it. They know he cant talk but they also know what makes him tick. They understand the complexity even if they do ask questions about him. They know he is unable to hold a pen without assistance. They know he needs help to eat and that he is messy. They know he loves music and swimming and they know how good he is at both.
There is so much comfort in these kids. They take an enormous amount of pressure off myself and Ted’s siblings. They are responsible for some of the best parts of Ted’s life.
To be accepted, understood and to belong are all big ticket items that hurt when you receive a diagnosis like Angelman Syndrome for your son.
Walking and talking really doesn’t matter in the scheme of things.
To be loved is number one, followed by health.
The result is happiness.
Symptoms of a good life.
Teds campaign in honour of Huxley's Heroes to is still open if you would like to contribute: https://move-for-a-cure-huxleys-heroes.raiselysite.com/t/teds-angels
