Non verbal, Non speaking, unable to advocate for yourself, it makes you extra vulnerable. There are so many layers to parenting a child with autism. Having a child who is non verbal and has substantial difficulties communicating adds another layer to navigate.
I don’t think many outside of our world can understand the constant battle, and how profoundly it affects every aspect of our life,and even more so our Child’s life.
The lack of understanding on how different this looks from one individual or another, puts us on a repetitive loop of explaining our child’s situation. It is frustrating as you can imagine. I am not referring to the older women at the park,or to the young mom
who had never encountered someone who is non verbal.
I am referring to the very institutions intended to help us. Case managers , doctors, insurance workers, the list is never ending.
It is a constant balance of advocating and accepting. It is such a big job when you are your child’s voice,It is exhausting. When everything falls on you, the decisions, the guilt,the energy to push,the sheer exhaustion from never getting it all down.
This life affects your mental health. It takes a hit. It affects your ability to stay on task, to remember to make the phone calls,the appointments ( and go to them),to keep
moving ahead no matter what.
It’s leads to feeling inadequate at times. You have this enormous responsibility to be your child’s voice, to fight, to advocate. Of course you love your child and would do anything to help them, it just feels at times that it is an uphill battle. It feels like a lot to take on with such little support and understanding.
It’s just such a complicated layer to navigate and to explain.
Alyssa ran out of her medication, partly due to me but partly a glitch with the insurance. A medicine used to treat seizures, that she had been on a long time. All happening on a Friday. I had to call so many people. I was literally on two phones at once. It took hours to navigate and lots of tears.
It would be dangerous for anyone to go off this medicine abruptly,but someone who can not communicate, or explain anything going on with their body is even more problematic. It put me in a panic just to think about it.
When I called masshealth to try expedite it,they informed me they could only speak to her. I told them she doesn’t speak and we are her guardians,she said it doesn’t matter she only talk to her. I was irate as I know this is not correct,but sometimes you hit a wall.
At this very moment I felt the weight of the world. The fear that comes along with being responsible for someone who can’t communicate and how truly vulnerable that makes her.
Of course I was not giving up,nor will I ever. Realizing that it was a three day weekend and that added an extra day without medicine put me into a tailspin.
TIme was ticking and I could almost hear it as the 4 O’clock hour was passing by and we all know how everything shuts down at five on a Friday. it was able to get it temporarily resolved at the last minute.
I will always fight for her as she deserves nothing less. #autism #advocate #nonverbal #nonspeaking