“Different not less”.
Being a mum of an autistic girl is challenging, rewarding, devastating and an emotional rollercoaster. Their ability to mask, mimic and cope, holding it all in until they feel safe. It’s well documented but little understood. Unless you have experienced it , you can symphasise but not emphasise.
Continually self-defeated, trying, wanting, needing to get the right support yet constantly hitting a brick wall. This is the Phoenix Effect: the ability to rise again, stronger ready to battle, “I will be heard”.
As a parent of two children with additional and opposing needs, days are never the same. Getting the balance between the sensory seeker and the sensory avoider, finding my calm in the storm. Balancing the brook with the whirlwind swirling through, completely indifferent to the screams of “Be Quiet!, I’ve had enough!”. One of the hardest challenges is knowing how sensitive her hearing is, that noise causes actual pain and constantly trying to limit her squawking, seeking sibling. Calmly cuddling one after the other has physically lashed out again in complete sensory overload and frustration. Taking photos, memories of them rarely playing together nicely. Just being kids.
Remembering to say one child’s name before asking a question to avoid one answering before the other. Feeling the injustice when explaining again why he needs daily meds and she doesn’t. Answering her questions about social cues because of an incident at school that she can’t process, doesn’t understand.
“But she looks normal.”
Yes, she does. It doesn’t mean she’s not struggling, barely coping with the multiple noises, lights, crowds. Building to a volcanic explosion.
But what is normal? Not one of us is the same. Each different in our own ways.
“It’s ok to be you”
Five words that can mean so much.