Sometimes I get so caught up in PanKwake’s wonderful, delightful, and awe-inspiring #AutisticSuperPowers that I forget…
ALL gifts come at a cost!
The brighter the star…the hotter it burns!
This summer even in the quieter, more serene environ of Swansea, Wales PanKwake has been almost housebound due to sensory issues. We have done the local leisure center ONCE. We used to do it almost weekly. We have gone to her beloved Tater Man once. Also a weekly pilgrimage.
She did manage to do Oakwood with her brother before he went back to America. But it was costly…financially and emotionally. But well worth both for the fun and adventure she had.
Last night though was a reminder of another darker side. It was the worst meltdown in a year. The kind where it takes us both to keep her safe. The type where we fear the voice next door are the neighbors calling the police or social services.
And in that moment…I realize how powerless I am. How fragile all that I have done with her to build her up, give her a good self-image, and protect her from bullying really is.
All because society and especially governmental bodies like police, social services, and education are still working on #AutismMyths and believing lies of a popular therapy that is more damaging to the pysche of the #ActuallyAutistic by forcing them to ‘act normal’.
I think it is ironic that I who believe above all others in the rights of the child…especially #neurodivergent ones could have courts and others use ‘in the best interest of the child’ to undo all of the positives.
But the nasty truth that stared me in the face at 4 A.M. is the fact that my beloved child could be medicated, forced into a school where she was bullied, and worse…all because we do not conform to ‘accepted’ methods.
I am tired and may not being saying all this just right. I am tired from lack of sleep…sure. But I am exhausted from rowing against the stream to give my child a brighter future than previous generations of #ActuallyAutistic had. And I feel vulnerable…and yes…Scared.
She and I may both boast about her role being to change the world…and I still believe that to the bottom of my heart…but sometimes that cost is so high.
In these moments, I remember the words of my beloved Scarlett…
3 thoughts on “Don’t Ever Get Comfortable!”
Oh gosh yes it is SO exhausting constantly rowing upstream simply to do what is right for your child. And being SO scared of the possibility that that right could be taken away from you by people who seriously should no better, but as yet don’t. Life as a parent of an autistic child, who believes in the rights of the child, is such a scary place to be at times. Hugs. 😦
Thank you for your words of encouragement. Goddess bless to a fellow warrior for justice and fairness.
I meant ‘know’, not ‘no’! lol