Thank you for such encouraging words.
I recall times as a child wishing adults could "see" what was going on at our house, and/or "do" something about it. I had to wait until I was old enough to do something about it and vowed to break the cycle.
I know for my child, it is especially difficult when the disability, pain and suffering continues unrecognized, as though invisible, by adults and/or peers -- and yet, how often this can be the case for people with physiological disabilities as well. I was shocked to see my child suffering, at such a young age, so intensely, trapped, trying so hard to make sense, struggling with intense emotions as if on fire, silently screaming, wanting it to stop, wanting not to see anyone get hurt or suffer like her or from her, afraid of herself, endlessly trying to pin false guilt and shame on herself, reliving traumas through nightmares and flashbacks, losing her faith, her dreams, her hope, her strength. Her words were unmistakeable, unforgettable. I am grateful she could communicate and trusted me, and that I was able to hear and see what was happening.
At times I definitely felt alone -- like when school teachers could not acknowledge, recognize or respond appropriately to her challenges -- I know she cried out for help at school several times to no avail and in some cases was humiliated and reprimanded before her peers, where she should have been uplifted and supported for having the courage to show up again and again. She tried her best to mask it at school, sometimes successfully. Professional evaluators, nonetheless, ultimately identifed and validated our concerns. Finally, someone helped me describe it -- she was "imploding" -- rather than "exploding" as some do, punching holes in walls or displaying emotions with physical release. Instead, she turned pain inward and tried to hide it, until she couldn't hold it in anymore -- often erupting after school. She also suffered night terrors and frequently woke up throughout the night, which led to falling asleep in class and other complications.
We worked hard to explain her case for accommodations, permissions, and services at her school. OFSN and ORPTI and the legal help we got made a huge difference. This year, we finally managed to make progress towards getting her some of the services and accommodations. I do wish the systems were working better in our area, that school staff were less defensive, restrained and formal, in general -- I feel strongly that most of the accommodations requested were simple matters of common courtesy with little financial impact, if any -- like permission to go to the bathroom when she needed to, or permission to carry her cell phone on her body (in a pocket) with an agreement that it would not make any sounds, but she could look at one of the pictures on it -- which helped her calm down and feel safe enough to continue working in class (alternatively, a bracelet or pendant).
Little by little, if we all do something, we'll get somewhere better than we are today.
I am hoping for and working towards a better legacy for my grandkids.
May you and others find relief from isolation in the company of so many caring folks connected to this organization!
One more note on medication:
As hormonal changes continue, we've had to make some minor changes to the medication dosage(s), but I am glad to report that she's able to smile again, making great strides.