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