Parents Blog

THE SYSTEM NEEDS TO CHANGE!

Parents Blog

A LIFE I NEVER IMAGINED
Having a child with a mental illness, at times, can be like silent drowning. You can’t scream for help, you can’t splash, you can barely breath. You are just there struggling to keep your head from going under and hoping someone will see you on time. When people look at you things seem calm and quiet. They don’t see the magnitude of the struggle going on beneath the surface. 
You get really good at pretending things are ok. Most people don’t see through the fake smile and the ambiguous “I’m fine”. They don’t see you are deflecting conversation about typical kid things because your kid is anything but typical. You learn to be quiet with most people. They cant see and can’t understand the weight you carry, nor do they want to. We carry enormous amounts of guilt, shame, anxiety, loneliness, and only God knows the worry we feel.
Not only do we take on our own feelings, we carry our child’s as well. We take on all the emotions they can’t express and deal with in the form of their extreme melt downs, suicidal and homicidal talk and actions, dangerous impulses and verbal and physical abuse. 
We see our children’s darkest places and we are right there to reach in and fight like hell to pull them out.
Every. Single. Day. Each time we come out with a new battle scar. We are blamed and judged for their behaviors and for the very steps we take to correct that. I can only imagine the anguish my beautiful boy goes through. I know he doesn’t want this. I see it in his words to me. He looks to me and asks why no one can help him. I see it when my back is against his bedroom door and he quietly cries over and over “I can’t do this” or “why?” I see it as he’s standing there screaming with a knife in his hand poking it to his chest threatening his existence. I see it on the way to the hospital as tears stream down his face while he verbally and physically attacks me and yet begs me “Please don’t do this to me”.
I see it in his screams every time l let the officers take him from me.I see it in the panic on his face as he realizes his arms and legs are bound to a stretcher. I see it In the blisters on his feet from trying to wriggle out of the restraints. I see it in his hand as he reaches and pleads silently for me to take him instead of letting him go into the ambulance. I see it as his body shakes while he cries alone in a corner. I see it in the shame on his face as his chin quivers and he can’t say a single word to me because he feels he doesn’t deserve love.
I see it when he wraps his arms around my neck and I hold him close and we cry together. This child is my heart beating outside my chest. 
Let these words I wrote sink in. As uncomfortable as it is to read, this is our reality. He is the face of mental health. He is eight years old. Eight. He did not ask for this. We grieve a life we thought we would have. Yet we move forward. We will make something beautiful out of the life we were given. I will keep fighting for my son. A friend once told me you can take a situation and either let it define and destroy you or you can choose to learn from it and move forward. This disability will not define or destroy us. We have endured to much and have worked to hard for that. Better days will come. Until then I choose to keep moving us forward even when the current is trying to push back and take us under.
By: Rebecca Griffith  (Thank you for sharing your story by doing this it encourages other parents to share theirs.

THE SYSTEM NEEDS TO CHANGE!
Tom is a 7 year old boy. He was born with a rare genetic mutation called DNM1.
Here i will talk about Tom who is a 7 year old wonderful boy born with a rare mutation called DNM1. This means that the protective protein for his synapsis is not produced.
These children have behavioral abnormalities, intellectual disabilities, encephalopathy, aggressive behaviors, focal seizures
which are incredibly difficult to control with medications, self injurious behavior, global brain atrophy, hyperactivity, developmental regression, lack of speech, poor or absent visual fixation, inability or difficulty walking (Tom is currently the only known child who has the ability to walk up stairs) as well as a range of other issues.
I have been told off more than one time for saying things like autism isn’t a disability the societies inability to change makes it one.
As an advocate I get people’s small mindedness.
Tom’s IQ was tested under 45 because he cannot complete any current testing options. More than likely it falls in the range between 10 and 20.
Tom’s mother has MS fairly advanced. She also has a 10 year old and 3 year old.
Tom’s testing has reduced from 50% delay at 3 to 97% delay at 7 showing extensive brain atrophy.
Because Tom needs nursing he has never received therapy outside of school. The wait time of 7 years for a spot on the innovations waiver which would allow him to have both nursing and therapy means he would most likely be unable to even use therapy because his brain atrophy will be so extensive by the time he gets on it.
Tom’s behaviors include throwing metal trucks in the crib with the toddler and breaking out windows to chase trucks down the highway. Mom currently has a fractured nose from trying to chase him in one of these instances.
It has been suggested he be put in a home. The training for most of these places is first aid and a high school degree which of course is not adequate care for this child.
As such Tom receives inadequate nursing and no therapy to help stave off death from brain damage. No government agencies will work together for his care and he is currently doomed to sit on a wait list for a spot that when he gets he will be too damaged to use.
The system needs to be put on show for children that do not fit the brackets of their care.
The waiting times kill children!
The children with this disorder end up having epileptic fits for hours until their brain is so damaged they don’t wake up. The only way to buy time is therapy.
But because he needs nursing he cant access any.
the system to change. When I found this kiddo he was in a normal class sitting in the back with blocks in a soiled diaper.
I have cried almost daily since because he cannot access help.
I’m an Australian originally and this would never happen back home. When medical is for profit the ones who need it the most pay the price.
I cried many times, i just want the system to change. When I found this kid he was in a normal class sitting in the back with blocks in a soiled diaper.
I have cried almost daily since because he cannot access help.
By: an anonymous mental health advocate/carer based in US.
(Thank you for sharing your story by doing this it helps raise awareness and letting the public know that something desperately and urgently need to change in the health system for more robust care and support. Especially when dealing with vulnerable people such as children and elderly and disabled, mentally or physically. 
Note* Fictional name have been used.
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