Disability Awareness & Advocacy, Music, Uncategorized

I Will Never Surrender

Foo Fighters – The Pretender

This is one of my “fight” songs.

I have many.

Feel the music.

Fight for the people you love.

I’m posting this to remind myself and others – that speaking out on behalf of people in need, I know, is never easy. Sometimes it’s even dangerous – but when hate seems to be everywhere, we can’t rest.

We must be brave. We have to stand up, draw a line in the sand, and take exception to that hate.

We must tell the misguided, ignorant, confused, mean, cruel and evil to back the fuck up.

In anyway that we can, we must protect those who are less-fortunate and those who are considered “less than”, because I believe that THEY are the “most” of all of us. They decide who we really are as human beings. Let that sink in for a moment.

Before I begin to get deep, dark and dirty, know that at the heart of ALL that I do (say and write), is not just for my child’s sake alone – but for all of those who are struggling in a world of hurt.

I have found that in the quiet of the night, when my mind is not at rest, ideas come to me – and I accept that these thoughts come into existence almost like an outside force and as a way towards making the world a better place – in spite of those who build walls to keep people in and to also keep people out.

No matter how awful or sad it gets, we can’t ever give up. We’ve heard it said, It’s always darkest before the dawn. And so from time to time, as we wage what seems to be an all-consuming battle against the darkness, we must remain vigilant that we don’t lose ourselves as we make our way to the light of a new day.

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Disability Awareness & Advocacy, Uncategorized

Teenage Boy Looks After His Elderly Neighbors

When I see or read something relative to compassion, empathy, love… I’m gonna make sure that everyone gets a dose of kindness and inspiration! Here’s such an example.

Published by Farah R. | Positive Outlooks on September 17, 2019

While all mothers and fathers need love and attention from their children, we all know that those who need it most are elderly parents. It is during the golden years of their lives that they need our companionship the most, and it is also the best time for us to show our gratitude and repay them for all that they have done for us. As good sons and daughters, we want to be by their side 24/7 to make sure that we are at their aid whenever they need us. But due to our personal commitments – work, own families – we just can’t do so. That’s why it’s always good to have someone that we know we can rely on – a neighbor, friend, or relative – to care for our elderly parents when we aren’t around. Lucky for Tiki Joyner Edwards, she found that someone whom she could trust in the person of a teenage boy – one who wasn’t even related to them.

This young man’s name is Romemylion Mitchell. Despite having no blood relation to the family, the teen has made it his mission to check on Tiki’s parents, Trent and Cianne Joyner, every single day to check if they needed anything. A few months ago, Tiki shared the story of Romemylion’s act of kindness on Facebook, and it immediately gained a lot of attention online for all the right reasons.“I just want to take a moment and recognize this sweet fella that lives across the street from my parents. He checks on them every day and has grown to love and care for them deeply,” Tiki wrote. According to Tiki, the 15-year-old rides with his dad to the store helps him shop and assists in bringing the groceries in.

He also cuts the grass and does for them whatever Tiki’s elderly parents may need.“Not many 15 yr olds would take the time to care and be there for elderly neighbors,” she continued. That is true. Romemylion might have other things on his plate – school work, hanging out with his pals, and other responsibilities – but all of these things didn’t keep him from taking care of his neighbors. The couple didn’t need to pay the teen to do all those things – he just does – and that’s what makes this story even more beautiful. Here, we see a selfless boy dedicating a part of his day to helping other people, and he doesn’t ask for anything in return.

Over the years, the boy had developed a special bond with the whole family. When Tiki’s mom was admitted to the hospital months ago, Romemylion immediately visited her to see how she was doing.“When he saw Mom today he busted out crying and just held her tight.. what a blessing and just wanted to pass on something heartwarming instead of the sad news we see and hear every day,” Tiki wrote. It warms our hearts to see this teen willingly helping other people without expecting any reward. He is a real asset to the community and we’re sure that his own family feels very proud of him!

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Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part One

It’s been many years of constant love and trying to do the right thing; always struggling with the powers that be … and thinking that others who were supposed to be in place to help, were also on that same page. Sometimes (okay rarely) I was right – but more times, very wrong

The unfortunate truth, in being the parent or guardian or advocate for a child/adult (or for an individual with a disability), is that this has always been basically a flip of the coin. My real-life experiences have been long and many.

I have learned that laws, regulations, policies and guidelines sometimes mean something and sometimes mean nothing at all. It all depends on the commitment of others. It depends on who the doctor or specialist is and “their staff”. Sometimes their staff drop the ball, are rude don’t follow through or just don’t get it – and it doesn’t matter because they get paid anyway.

It depends on the special education system, whether teachers, therapists (Physical, Occupational Therapists and Speech Language Pathologists). And then there is the supervisors and administrators. You can have the best teachers and school therapists and if administration doesn’t support them to support your child, well…. much is lost if not entirely.

And we have next those at the county-level, namely community mental health, under the state auspices of control (control of funding and budgets), who are mostly social workers with a bachelor’s degree who come out of college not knowing anything on a moral or practical level. Forget any need to hone your craft or go beyond what they “learned in college”. I term them as “the gatekeepers”, who say “no” on a regular basis… because they choose to remain disengaged, ignorant or lazy.

They’re more involved in appeasing “the state” when it comes to how the money is spent…. or not spent.

I think that when these young and inexperienced social workers, when they start to work on behalf of others “less fortunate”, are too often taught (assimilated into a kind of “collective”) that it’s all about the money … as in don’t spend the money. So no wonder that there is a desensitization-process and a disconnection between what they should do and could do on behalf of people with disabilities – and then it’s a given, that those who are hurt the most are the most-vulnerable. That minority are those who are severely-multiply disabled.

I’ve heard just about every reason for “no”. They like to say they have a “lack of resources”; “We don’t have resources for that….”. We don’t have to “provide that support or service” because it’s “not written in a policy manual”. Or they outright ignore repeated attempts by parents, guardians, individuals to change the system, who are trying their best to get it to work for their person.

Why yes, “they” (those who are disabled) are PEOPLE. People are human beings. (I felt the need to clarify that one!)

First there were the medical issues and meeting those needs in keeping Max alive. He was a preemie, like many, many other babies before and after him. He was tiny and precious and okay, oh-so-cute – and my child with a precarious and unknown future.

I was actually afraid to love him in the beginning! I had been told by a neonatologist that an infant born as early as Max, was certainly at the highest risk of developing some huge problem with some major organ or system in his tiny body. Isn’t that the saddest thing ever? Being afraid to love your child? To become attached? Awful!

What to do? What should I know? I had never had a child with severe, multiple disabilities as his. I decided I would be brave and I knew that I loved him no matter what, and I knew that I would do whatever I had to, to protect him – against all odds. It’s been that way ever since.

This little guy came home on an apnea monitor, medication around-the-clock to keep his heart rate up. He was on oxygen. Very scary times. Absolute anxiety and this desperate feeling churned inside of me. What was this awful emotion? It was stress rolled up into a ball of fight or flight. I remember bathing him for the first time in the NICU, knowing as family members watched, that I had to look confident so that they wouldn’t be scared. I had to be brave for Max’s sake.

He couldn’t come home until everyone in the family learned how to do infant CPR. And then there was the throwing up and every little ounce of formula that he’d drink was mostly coming back up. It was a huge struggle….

His life, his quality of life, has always been a struggle and very frustrating when people have not cared to do their jobs. I mean, why go into jobs (or fields related to the human condition) that require you to be resourceful, kind, patient, persistent and strong? These types of jobs aren’t careers, also in my opinion, but should be termed as a “calling”.

So I jump forward, many years into the future and he’s grown up into a handsome young man with a brilliant smile; with eyes that (must) express his both funny and serious soul. And what is life like now?

END OF PART ONE

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